tag:blogger.com,1999:blog-30755835018090460532024-03-09T18:46:02.565-08:00CoffeeMommycaffeine-powered working mama & shiny object follower. runner. suburban environmentalist. cyclist. breast cancer ass-kicker & empowered patient advocate.
Find me on Twitter @coffeemommy
coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.comBlogger140125tag:blogger.com,1999:blog-3075583501809046053.post-73679486865730648372023-01-07T16:55:00.001-08:002023-01-07T18:32:22.317-08:00Day 5/6<p> </p><p class="MsoNormal">Intentions. <o:p></o:p></p>
<p class="MsoNormal">Writing everyday was an intention, not a promise, so I haven’t
failed. I just didn’t write yesterday. <o:p></o:p></p>
<p class="MsoNormal">Not to make excuses but life didn’t really allow it. On
January 5<sup>th</sup>, I woke up early to see if there might be a glimpse of
the sunrise before yet another storm moved in. While I did catch a bit of
light, there was no visible sunrise, and my lighthouse was being pummeled with
a storm surge that turned catastrophic for coastal homes and businesses as I mentioned in the last post. As the storm surge moved in, I moved out. </p>
<p class="MsoNormal">Late last month, I’d made plans with my son to bring some
things down to him at UCSB before the quarter started. Between “Pineapple
Expresses” and “Atmospheric Rivers”, driving four plus hours seemed like a decidedly
bad idea so I decided to take advantage of a brief rain break Thursday afternoon
to make the drive. <o:p></o:p></p>
<p class="MsoNormal">Years ago, I was always up for a road trip. Give me a bag of
FUNYUNS®, a package of Reese’s Pieces, and some caffeine and I was famous for getting
in the car with the Eagles Greatest Hits (cassette!) and ending up in a
different state – which is a considerable feat when you start in the middle of
Texas. <o:p></o:p></p>
<p class="MsoNormal">But long road trips haven’t held the same excitement for me
in the last couple of decades. And solo road trips pretty much ceased to exist
after I had children. <o:p></o:p></p>
<p class="MsoNormal">So, this trip was keeping a promise while consciously going
outside of my comfort zone a bit – something I feel like I should do more
often.</p>
<p class="MsoNormal">To say I was ‘white knuckled’ as I began my drive, would be
an accurate representation. Rainfall had slowed but coastal evacuations were
still in place and massive flooding was underway. With the daylight, and Google
Maps, I was mostly confident that I could avoid issues and the recent public
service mantra, “Turn around, don’t drown” was running through my head.<o:p></o:p></p>
<p class="MsoNormal">Once I finally made it to SB 101, I had a bit of confidence
that this was perhaps a hairbrained, but not completely insane, idea. The drive
was long, and I didn’t make any stops which speaks to my out-of-practiceness
when it comes to road tripping. But I was rewarded every hour or so with the
most amazing rainbows. No, really, THE most amazing rainbows with vibrant
colors and several that made full arches. I have no photos of those rainbows.
Pulling my phone out of nav and pointing it out the window while I was
traveling 75mph down the highway seemed like a bad idea. I wanted to get those
images. To record them so I could share that experience with others. But I didn’t.
<o:p></o:p></p>
<p class="MsoNormal">Felt like the universe’s reminder to me that starting something
in decidedly miserable conditions doesn’t portend for continued miserableness. Felt
like the universe reminding me that beauty appears suddenly and, if you blink, you
might miss it. And felt like the universe reminding me that, while we live in a
society where ‘it didn’t happen without photographic proof’ is the default, magic
that remains unrecorded in traditional means, is still magic and can always be
recorded in my heart and mind. <o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p><p class="MsoNormal"><o:p><i>(I did, however, take a few pics Santa Barbara. Spending some quality time with my son was pretty priceless and, while I don't NEED a photo to remember, these photos and the reminder of that time make me smile.)</i></o:p></p><p class="MsoNormal"></p><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWSaV34z4Rx5xyWtIZn6jdPw0RnLnRDs3LgIdJ2pTWZcQ0CqJYkyX1f2oxiyMOTYjgE4sdhzPxPjwPeQnWiWGM71hhtCHPSlAW5K_QHiBSvQGdUB7F2YDTUovOz3ma3TIWQoUaYWLvYCU2bGknUqNsX7FEHpvpsUc4BoXCcmCIb7uj9OYBfXbbMT6qhg/s4000/20230105_195754.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3000" data-original-width="4000" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWSaV34z4Rx5xyWtIZn6jdPw0RnLnRDs3LgIdJ2pTWZcQ0CqJYkyX1f2oxiyMOTYjgE4sdhzPxPjwPeQnWiWGM71hhtCHPSlAW5K_QHiBSvQGdUB7F2YDTUovOz3ma3TIWQoUaYWLvYCU2bGknUqNsX7FEHpvpsUc4BoXCcmCIb7uj9OYBfXbbMT6qhg/s320/20230105_195754.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKM16Y0WKTGk0_SE7maa1Pi7lQPAFh0-puLZ5KELBP-i-ijKpFcJuJYSN_Bgn1OXi4NBADpWwB-ud4cUugF-2p8-mMttEt7quOenTm_W0ezcyT4fghJbnKDLrMtpxQqX0M0T6VJLwbWu0aPkKvJ_7pZFVeUZOLgEwt8jWHYt1Q3LU1j20-_8u4nv9E3g/s4000/20230105_204626.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4000" data-original-width="3000" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKM16Y0WKTGk0_SE7maa1Pi7lQPAFh0-puLZ5KELBP-i-ijKpFcJuJYSN_Bgn1OXi4NBADpWwB-ud4cUugF-2p8-mMttEt7quOenTm_W0ezcyT4fghJbnKDLrMtpxQqX0M0T6VJLwbWu0aPkKvJ_7pZFVeUZOLgEwt8jWHYt1Q3LU1j20-_8u4nv9E3g/s320/20230105_204626.jpg" width="240" /></a></div><br /><o:p><br /></o:p><p></p>coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-38803024977524669972023-01-05T12:52:00.002-08:002023-01-07T16:49:16.788-08:00Day 4: Walking in the Rain<p> </p><p class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">The
second Pineapple Express/Bomb Cyclone/Winter Storm arrived yesterday late
afternoon and, by all accounts, it was less severe than expected. That said, I
spent the better part of my early morning wandering my favorite community walking
spots only to find most of them overcome with the ocean.<o:p></o:p></p><p class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">As I
explained to an out-of-state friend who was doing a status check,<o:p></o:p></p><p class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="color: #b6d7a8;"><i>“</i><i><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">We are fine. Super wet and awed
by the power of the ocean but high enough that we're not flooded and no big
trees too close by. I do have some epic pictures and videos of this week's
craziness and today at 11:30am our swell is supposed to peak. I'm obviously
impressed but have been shocked by the times I've heard lifetime Santa Cruzians
say, "Oh my gawd, I've never seen it like this before."</span></i></span><o:p></o:p></p><p class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">Instead
of my typical 40-minute lighthouse out and back, I spent over two hours hugging
the coast - high enough to be out of danger but close enough to be a little
nervous. As with the tsunami early last year, the neighborhoods were filled
with residents turned lookee-loos but storm swell watching feels markedly
different than rubbernecking a wreck. No one is injured and we are all just
checking on our community and simultaneously basking in the pure power of
nature. Seabright Beach, Main Beach were completely consumed by water. Enormous
trees, roots and all, were bouncing out the mouth of the San Lorenzo River. The
combination of high tide and a storm swell caused flooding in the harbor
parking lot. By we were all on solid land, sharing pictures and thoughts and experiences.
My walking path back through the harbor was closed and so I enjoyed taking
the long way home. As with most long walks, I met new friends, saw old ones,
and returned home with fabulous photos and clean lungs.<o:p></o:p></p><p class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">I
came back just in time for another deluge and to see others' online photos of
much more destruction than I'd seen. People will be sad. People will be angry.
I feel for them. Home is sacred. And should feel safe. <o:p></o:p></p><p class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">I
came back to a warm home. Transparently, our roof leaking a tiny bit in the
fixer-fixer upper, but our new windows are fantastic and I’m grateful to be
safe and dry. And now to figure out what part we can play to help those who
didn’t fare as well in the storm.<o:p></o:p></p><p class="MsoNormal">
</p><p class="MsoNormal"><o:p><i><span style="font-size: x-small;"> (pics may be unremarkable to those unfamiliar with the area but suffice it to say that there is usually a lot more sand in those views and I usually circle the Walton Lighthouse every day)</span></i></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBRPsgdl40ouYEpt-Ylx6zieVM_IFLFNmb-AJkoiIt3G9S_ih4JNw_shjyZg0M1o9yCF4jUC-L14L7AcbA_zQ-cgiHsSZ5wwW6GhA6HJ62ZWtM8khcNp8qj-r_lP7RGGw7TKLPyITT_W7YDTwDLWpzRCTS9L0LKBPQbjUCH9DDUqLYdyKe0SPHJxHUTA/s1600/20230105_070647.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBRPsgdl40ouYEpt-Ylx6zieVM_IFLFNmb-AJkoiIt3G9S_ih4JNw_shjyZg0M1o9yCF4jUC-L14L7AcbA_zQ-cgiHsSZ5wwW6GhA6HJ62ZWtM8khcNp8qj-r_lP7RGGw7TKLPyITT_W7YDTwDLWpzRCTS9L0LKBPQbjUCH9DDUqLYdyKe0SPHJxHUTA/s320/20230105_070647.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguaNppsSHPFjwCGouFV-Lo5cTUA3J-osKd4jPMP_v7nYYt5Bwz_S-4L_aIW97DLqJL_asqXrorw0inA-54LBtWYWtL4ZAAALh5iRNoUO8rDwVbnoXR_iDT6YHPEf6bwG2O8ZVrrsX0jbQ1qZiF6b9_GSD4ZXg70u0cnuljXDfTFwJb5yWhlINB0JoP8g/s1600/20230105_071424.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguaNppsSHPFjwCGouFV-Lo5cTUA3J-osKd4jPMP_v7nYYt5Bwz_S-4L_aIW97DLqJL_asqXrorw0inA-54LBtWYWtL4ZAAALh5iRNoUO8rDwVbnoXR_iDT6YHPEf6bwG2O8ZVrrsX0jbQ1qZiF6b9_GSD4ZXg70u0cnuljXDfTFwJb5yWhlINB0JoP8g/s320/20230105_071424.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW2IL8xgj_m9y53cJMLT58VLFfRoToE48Z7B8e-8vq6Av8mEhfDux5ZAGpACcsWWlYzLxOtNGxi9rgVR4vQyfEFQ-x7hFYZvTXSn8Z8AQVI0gnIBCec0CRdlUj71iuwWTB5igrm_ygiJ9gWRb3pfWcMxS-6z5LMbLUin6y2EANMtvP4H3-t5HdwOJVPg/s1600/20230105_073543.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW2IL8xgj_m9y53cJMLT58VLFfRoToE48Z7B8e-8vq6Av8mEhfDux5ZAGpACcsWWlYzLxOtNGxi9rgVR4vQyfEFQ-x7hFYZvTXSn8Z8AQVI0gnIBCec0CRdlUj71iuwWTB5igrm_ygiJ9gWRb3pfWcMxS-6z5LMbLUin6y2EANMtvP4H3-t5HdwOJVPg/s320/20230105_073543.jpg" width="240" /></a></div><br /><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p>coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-21564139115972698562023-01-04T15:05:00.000-08:002023-01-04T15:05:26.441-08:00Day 3: Digital Dread<p> </p><p class="MsoNormal">Upgrading technology fills me with dread.<o:p></o:p></p>
<p class="MsoNormal">The idea of getting a new laptop or phone triggers much more
anxiety than anticipation. Don’t get me wrong, I love access to more storage
and the improved camera technology that seems standard for my every two- or
three-year upgrade cycle. But inevitably, there seem to be challenges that come
along a new device. <o:p></o:p></p>
<p class="MsoNormal">Am I making the right product choice? <o:p></o:p></p>
<p class="MsoNormal">Am I paying the right price, or should I wait a week, a
month, a year? <o:p></o:p></p>
<p class="MsoNormal">But, above all else, I mostly fret about the data transfer. <o:p></o:p></p>
<p class="MsoNormal">The sad reality is that I do not remember most of my application
passwords and therefore must resign myself to a week-long transition between
old laptop/phone and new laptop/phone while I reset all my passwords. It’s
mostly a hassle but I worry that I may lose photos or contacts or something
else that I didn’t even realize I depended on. <o:p></o:p></p>
<p class="MsoNormal">This year I upgraded my phone. <o:p></o:p></p>
<p class="MsoNormal">The whole process was a bit of a fiasco, having ordered the phone
I wanted and then having that ordered cancelled by Samsung for reasons still
unknown to me and to my carrier. I went into a Verizon retailer to find out why
but there was no information. Since I wanted the expense to fall into 2022, and
Verizon couldn’t make that happen (they bill you when it comes in), I ended up
purchasing an unlocked phone through Best Buy on 12/30. <span style="mso-spacerun: yes;"> </span>Rather than attempt the dreaded transfer
myself, I brought it into a local Verizon store after the new year and patiently
waited in the post-holiday craziness for someone to help me initiate the
transfer. M was the same woman who had tried to help me before. Again, she was cheerful,
kind, helpful and got me started on a transfer - explaining that, once the data
transfer was complete, I could change the SIM card and I’d be good to go. After
nearly three hours, all 16K+ photos transferred, and my old phone and new phone
deemed the transfer ‘successful’. <o:p></o:p></p>
<p class="MsoNormal">With some level of eagerness, I collected my new phone,
changed the SIM card, and made my first call. It worked. Then I went to make my
first text…<o:p></o:p></p>
<p class="MsoNormal">And my breath caught in the center of my chest. <o:p></o:p></p>
<p class="MsoNormal">I had no texts. Not one. <o:p></o:p></p>
<p class="MsoNormal">My old texts didn’t transfer. <o:p></o:p></p>
<p class="MsoNormal">My texts. My years long message history with friends and
family. <o:p></o:p></p>
<p class="MsoNormal">My “Random Wednesday Love” and “Digital Deep Breath” exchanges
didn’t port over to my schmantzy new Samsung. My texts with my kids who are off
and away exploring their 20s and not available for a conventional quick hug
weren’t there. <o:p></o:p></p>
<p class="MsoNormal">And completely absent were my last exchanges with friends
who are no longer ‘on planet’. <o:p></o:p></p>
<p class="MsoNormal">I felt myself beginning to cry. <o:p></o:p></p>
<p class="MsoNormal">Okay, I did cry – it’s been an emotional damn week.<o:p></o:p></p>
<p class="MsoNormal">Then I looked at my old phone. Still there. I could still see
my last exchanges with Chino, with the Beths, with Ellen, with Angela, with the
Loris, with Sandi, with Silke and with so many, many others. While I was
grateful to know the messages had not disappeared into ether space, I was still
more than a little upset I would have to carry two phones if I wanted to carry
those messages with me. <o:p></o:p></p>
<p class="MsoNormal">And I DO want to carry those messages with me. I’m sure
there is some diagnosable condition for that level of connection to characters
on a tiny screen and, whatever it is, I’ve got it. <o:p></o:p></p>
<p class="MsoNormal">I downloaded a separate app that would ostensibly allow me
to transfer phone to phone items and managed to bring over my call logs but not
the texts so the next morning, I braved the elements (it has been rather
dramatic here weather wise) and went back to Verizon. M was there and I could
barely articulate my issue, getting stuck on the emotion as opposed to the
tactical need. She understood anyway, clicked a few things, and started another
transfer. As I left the store she said, “I don’t mean this in the rude way, but
I hope I don’t see you again.” I felt like hugging her. “Same,” I replied and
smiled pensively. <o:p></o:p></p>
<p class="MsoNormal">By the time I returned home, all my apps and messages were
on my new phone! This time the transfer was truly successful. I was on the
verge of tears again but these were tears of relief. <o:p></o:p></p>
<p class="MsoNormal">As expected, I can no longer log into over half of my mobile
apps (so expect some additional lags with Facebook, Instagram, Twitter, Strava,
etc.) but after the more gripping concerns over my text history, I’m more than comfortable
just knowing my digital hugs are back in my pocket – safe and sound. <span style="mso-spacerun: yes;"> </span><o:p></o:p></p><p class="MsoNormal"><span style="mso-spacerun: yes;"><br /></span></p><p class="MsoNormal"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9k_AhIks69QjJCpvaX2gGA_6R1X6P5av_r2nQunp8Ic6knCF7-3URTgJm2n2tTp7hvnmDvVpk0DikfbK6RwX8ZH7aSWt9T2gNGnfl78V4c-20VKFaYqC127sgsp0QGHVbO_U4TFuTxdxVYZDnompc9AdMgXEOQljFOcJG2qD5L_aWz3O85oWtswoFLw/s4032/20230104_145900.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9k_AhIks69QjJCpvaX2gGA_6R1X6P5av_r2nQunp8Ic6knCF7-3URTgJm2n2tTp7hvnmDvVpk0DikfbK6RwX8ZH7aSWt9T2gNGnfl78V4c-20VKFaYqC127sgsp0QGHVbO_U4TFuTxdxVYZDnompc9AdMgXEOQljFOcJG2qD5L_aWz3O85oWtswoFLw/w300-h400/20230104_145900.jpg" width="300" /></a></div><br /><span style="mso-spacerun: yes;"><br /></span><p></p>coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-52441763537626187822023-01-03T12:52:00.002-08:002023-01-03T12:52:26.841-08:00Day 2 on Day 3 of 2023: No Lessons Here, Just Observations<p> </p><p class="MsoNormal">Just now I tried to write directly into the blogosphere and
realized that typing into that medium fills me with digital stage fright. While
I know my plan is to post this missive, regardless of what comes out, I feel
much more comfortable blabbering on in a simple, empty, title less MS Word
document. <o:p></o:p></p>
<p class="MsoNormal">When I consider how odd that is, it feels like a little Jedi
mind trick that I play on myself. And it makes me curious as to how many other
mind tricks I play, consciously or unconsciously, on myself. Bubbling up in the
tricks department is my habit of boxing in my sadness or grief or anger by
reminding myself that life is actually amazing. And, while this is not untrue, because
life IS actually amazing, the ‘perspective shift’ game I play with myself likely
creates a false impression with others that I am an insanely always positive
person. <o:p></o:p></p>
<p class="MsoNormal">I am not. <o:p></o:p></p>
<p class="MsoNormal">I get sad. I get overwhelmed. I feel defeated. I feel despair.
<o:p></o:p></p>
<p class="MsoNormal">However, unless you are one of a handful of people in my
life that I trust implicitly, and feel is well suited to holding me as a burden
for a bit, you won’t see that part of me. Even if I trust you implicitly, you
may not see those emotions from me. <o:p></o:p></p>
<p class="MsoNormal">Honestly, I’m a total hypocrite in the emotions department.
I regularly tell people that they should allow themselves to ‘feel all the
feels’ but I tend to limit myself to the socially acceptable public feels. Perhaps
I need to work on this. Perhaps I don’t exactly know how. <o:p></o:p></p>
<p class="MsoNormal">Since it’s a new year, perhaps I could add that to my list
of intentions for 2023. <o:p></o:p></p>
<p class="MsoNormal">But I’m not going to hold myself to that level of personal
re-education on day 3 of the new year. Instead, I’m going to chalk it up as an observation and be kind of proud
of myself that I said it out loud. I own that behavior. Maybe if I own it, I can change it?<o:p></o:p></p>
<p class="MsoNormal">Perhaps, I’ll pressure test feeling all the feels a few
times and see what happens. Or perhaps I’ll just think a little bit about why I’m
so averse to giving myself that permission. <o:p></o:p></p>
<p class="MsoNormal">There is no lesson here. Not now anyway. But I’ve ‘written words’ two days in a row and I’m gonna allow myself to feel all kinds of proud of me
for that today.</p><p class="MsoNormal"><o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCuTrRifq4usrSbs22Qdo2Tb-8sW287B-m4riig96CIBT8L4awWPW4HICaVxjnjWf4Z9ZYT5yeYTmfJqQwt662TuQoNTt4Xj3rNeAzFJW7234ks22hJ31xYCkFuH3z9dplqTZe_PKbZuUrak4eCTkwOMB-H32dpLqMa3EHvBe31WR4KnUuKX3ePSsT_g/s4032/20230103_072641.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCuTrRifq4usrSbs22Qdo2Tb-8sW287B-m4riig96CIBT8L4awWPW4HICaVxjnjWf4Z9ZYT5yeYTmfJqQwt662TuQoNTt4Xj3rNeAzFJW7234ks22hJ31xYCkFuH3z9dplqTZe_PKbZuUrak4eCTkwOMB-H32dpLqMa3EHvBe31WR4KnUuKX3ePSsT_g/w300-h400/20230103_072641.jpg" width="300" /></a></div><br /><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p>coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-10228064855873637692023-01-02T08:54:00.000-08:002023-01-02T08:54:02.560-08:002023 Intentions - A day late<p> </p><p class="MsoNormal">2023.<o:p></o:p></p>
<p class="MsoNormal">In a couple of holiday conversations with family and friends,
the idea of new year resolutions came up. I’m not a big one for resolutions (mostly
because they feel more like pre-meditated failures) but I do enjoy the new year
as a fresh start and like to begin with intentions. My intention for 2023 is to
lean back into my writing. I committed to writing every day and am posting in
an effort to hold myself accountable. <o:p></o:p></p>
<p class="MsoNormal">Yep, I committed to writing every day in 2023. To process my
thoughts, my emotions, my concerns.<o:p></o:p></p>
<p class="MsoNormal">But it is the 2<sup>nd</sup> of January and I’ve already f*cked
it up.<o:p></o:p></p>
<p class="MsoNormal">So be it. I’m starting on the 2<sup>nd</sup>. <o:p></o:p></p>
<p class="MsoNormal">Writing has always been the best medium for me to think my
things. When I talk to people like a normal person, I get distracted and sometimes
stuck. When I talk about hard things, I worry about how other people will
interpret my tone of voice and whether or not I will start crying and woefully misrepresent
my point. When I am angry, I worry that I will be too sharp with my words and
inflict permanent damage on those that I care about. <o:p></o:p></p>
<p class="MsoNormal">But when I type, it all flows. Wandering as heck sometimes
but definitely flowy. <o:p></o:p></p>
<p class="MsoNormal">And when my emotions are stuck someplace uncomfortable, writing
about them helps to unstick me. Writing can help me take anxiety out of my body
in a choncky little blob so I can look at it, poke at it, unblobify it and then
move on. <o:p></o:p></p>
<p class="MsoNormal">I stopped blogging regularly when my kids entered high
school and a friend of my daughter’s announced she followed me on Twitter and
read my blog. Sharing publicly was always part of the process of being seen,
heard, and held but, I wasn’t ready for that level of sharing where my kids’
could potentially find out things about me, my health, my feelings, before I’d
had a face-to-face conversation with them.<o:p></o:p></p>
<p class="MsoNormal">So I pretty much refrained from using the blog for working
through deep thoughts, made a few general update posts after major events, and
then kind of stopped blogging. And then I stopped writing. And then COVID… and
empty nesting… and grad school… and a household move.<o:p></o:p></p>
<p class="MsoNormal">And no, I didn’t just transfer to a more private venue like
one of the 97 gazbillion journals that clutter my home. I stopped all together.
Essentially at a period in my life where I desperately needed my writing, I gave
it up. <span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal">Now I’m reclaiming what was always mine – my thoughts, my
emotions, my reality. <o:p></o:p></p>
<p class="MsoNormal">Trigger warning for those who may have stumbled across this
blog for cancer support or parenting camaraderie – beyond messing up frequently
while navigating a 20+ year marriage and serious trial and error efforts to
meet the evolving needs of newly adult children, my life intersects regularly
with things that society doesn’t talk often about including serious illness, dying,
and death. <o:p></o:p></p>
<p class="MsoNormal">I don’t know what I will write about but, at this point, I’m
choosing not to censor myself so please consider this a heads up. <o:p></o:p></p>
<p class="MsoNormal">And now… here’s to the best of 2023 intentions complete with a photo from my morning walk. <o:p></o:p></p><p class="MsoNormal">Sending love, light, and good energy into the universe. More tomorrow. </p><p class="MsoNormal"><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-eH7wqLuinzAcsQJeagObgC5DfowJPZl6LXGUPC9Yn3WqPARSyJjh4_tGkiTlkNM24K5DPajgfVE3f72rYzIh1By3ttembE8sn7CCNhB6YBfQdPdO3Ecr6tk0hRuoAPQ94c1NrZd_U4fsSWgzyn5QXPHY4JelU1UnkamO4z1H6u_l9xio3uYdRHiEmw/s4032/20230102_073335.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-eH7wqLuinzAcsQJeagObgC5DfowJPZl6LXGUPC9Yn3WqPARSyJjh4_tGkiTlkNM24K5DPajgfVE3f72rYzIh1By3ttembE8sn7CCNhB6YBfQdPdO3Ecr6tk0hRuoAPQ94c1NrZd_U4fsSWgzyn5QXPHY4JelU1UnkamO4z1H6u_l9xio3uYdRHiEmw/w300-h400/20230102_073335.jpg" width="300" /></a></div><br /><p class="MsoNormal"><br /></p>coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-86530505871846667262022-02-13T14:51:00.001-08:002022-02-13T15:12:17.232-08:00Relevancy, Muddling & Sleep Deprivation <p> </p>
<p class="MsoNormal">Honestly had to look back to figure out the last time I posted
a blog and to remember what the topic was – the pandemic has created a bizarre
timeline of history in my mind. Basically, when it comes to history, it was
either ‘before the pandemic’ or it was ‘last week’. There really is no in between.<o:p></o:p></p>
<p class="MsoNormal">As it turns out, it has been 18 months since I typed out my
thoughts, feelings, and bizarre ruminations and shared them with the world. And,
eighteen months ago, I was evidently struggling with relevancy. While sometimes
I can’t remember what I had for breakfast, I don’t need to re-read any of my
words to remember that struggle. Just the word ‘relevancy’ brings it all back.
Or rather re-surfaces many of those emotions along with many of those rhetorical
questions. <o:p></o:p></p>
<p class="MsoNormal">If I were to depend solely on the words in my post to remind
me of those feelings, I would think my existential questions and struggles revolved
solely around my place in the world as an advocate. <o:p></o:p></p>
<p class="MsoNormal">But to trust those words alone would be to lean into a half
truth. <o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiW7itgRWBcsRHHsUDOd3sBdPdSnftte3EwiQpE7QxSyDq9le9OidJCftfhInlPXUgIGOuaOBoWRzSyjaMO8glDPbsUNVPOmE7FOXMVxx9Tgs-eu15QSLEQ7bZGw8neScXaNIMsFijepwiPqMHNOo-Yw-gP5ct2wCOOmAtS1coVREewQ9fwWLnwL7AVMw=s4032" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEiW7itgRWBcsRHHsUDOd3sBdPdSnftte3EwiQpE7QxSyDq9le9OidJCftfhInlPXUgIGOuaOBoWRzSyjaMO8glDPbsUNVPOmE7FOXMVxx9Tgs-eu15QSLEQ7bZGw8neScXaNIMsFijepwiPqMHNOo-Yw-gP5ct2wCOOmAtS1coVREewQ9fwWLnwL7AVMw=s320" width="320" /></a></div><p class="MsoNormal"><br /></p>
<p class="MsoNormal">I am struggling through just about every aspect of life. <o:p></o:p></p>
<p class="MsoNormal">Struggling through advocacy, parenthood, marriage, friendships,
career, and generally just my place in the universe. I can’t remember if I
struggled pre-pandemic, in fact, somedays, I feel as if those days prior to
March 2020 are forever locked in a box right next to the box that holds all my ‘before
cancer’ days. <o:p></o:p></p>
<p class="MsoNormal">Candidly, these days it feels like a crapshoot on what I
should be fretting about and trying to fix. <o:p></o:p></p>
<p class="MsoNormal">So somedays I just cry. <o:p></o:p></p>
<p class="MsoNormal">I’d love to say that I cry, look up at the sky (or now out
at the ocean), find my inner She-Ra and persevere, like I so boldly stated 18
months ago but, lots of times, I just cry, get frustrated with myself, and then
cry some more. Am I depressed? Hell yes. Am I anxious? Hell yes. Do I feel alone?
Sometimes. <o:p></o:p></p>
<p class="MsoNormal">Am I paralyzed with fear about tomorrow and wanting to end it
all? Actually, no. Not even close. <o:p></o:p></p>
<p class="MsoNormal">COVID-19 took away my coping mechanisms. The pandemic has
taken away the gym, conference hug fests, concerts, and leisure travel. Reactions
to COVID-19 measures have created a wedge between me and some people that I
love. I’d really like to blame all my tears, and everything I see wrong in the
world, on the pandemic, in the same way I used to blame everything on
Tamoxifen. <o:p></o:p></p>
<p class="MsoNormal">But it’s not just COVID-19. <o:p></o:p></p>
<p class="MsoNormal">It’s racism, it’s poverty, it’s climate change, it’s
inequity, it’s suffering. <o:p></o:p></p>
<p class="MsoNormal">And it’s a societal norm that seems to pale in comparison to
the issues above but feels like a gut-punch on the daily. <o:p></o:p></p>
<p class="MsoNormal">Societal norms say that in my 40s I am supposed to be smart,
sassy, confident, ridiculously self-assured, and basically just nestle into my
womanly bad-assery. But I’m not feeling like a bad-ass. I’m feeling like a new empty-nester,
recent coastal transplant, and older graduate student who is struggling through
the pandemic and yet another effed up reality known as perimenopause. <o:p></o:p></p>
<p class="MsoNormal">Dude. <o:p></o:p></p>
<p class="MsoNormal">Like DOOOOOOOOOOOODE. <o:p></o:p></p>
<p class="MsoNormal">Pregnancy hormones were rough on me, and Tamoxifen was its
own clusterf*ck but this perimenopause thing is simply a whole ‘nother level up
of effed up chemical confusion. And… NO ONE TALKS ABOUT IT. Like no one. Well,
some of my girlfriends do when we’re hanging out together but… that’s right…
minimal hanging out in the past two years. <o:p></o:p></p>
<p class="MsoNormal">Instead, I’m reading about how my late 40s are supposed to
be filled with crazy confidence across all realms of life from bedroom to the
board room while I’m actually sitting on Zoom calls and crying midday because
who knows why. <o:p></o:p></p>
<p class="MsoNormal">The tears are likely due in part to sleep deprivation. I haven’t
had a full night’s sleep in over a week. And we are not talking about five
hours versus eight hours of sleep. We are talking about waking every 80 – 100
minutes like “I’m on fire” and flip flopping around in bed for an hour before
maybe getting another 80-100 minutes and starting the cycle again. I’ve switched
rooms, leveraged the couch, tried melatonin and herbal tea. Nothing is working.
The whole rigmarole feels a lot like the newborn breastfeeding night sweat era,
but I don’t have the benefit of an oxytocin-high and baby snuggling to
counteract my dead ass tired. <o:p></o:p></p>
<p class="MsoNormal">So… there you have it. <o:p></o:p></p>
<p class="MsoNormal">Still struggling 18 months later. <o:p></o:p></p>
<p class="MsoNormal">On my good days, it feels more like muddling and, for that,
I am grateful. <o:p></o:p></p>
<p class="MsoNormal">I’ve no asks and I certainly have no answers. Just putting
out a bit of reality to get it off my own chest. So thank you. <o:p></o:p></p>
<p class="MsoNormal">Thank you to the women who have commiserated with me and who
have offered me helpful hints on ‘getting through the change’. Like a gazbillion
other women who have had a hormone positive cancer, hormone replacement therapy
(HRT) is not an option. I’ll stick with diet, exercise, and routine with the
hope that eventually sleep will happen. If not, I’m totally going to dose
myself with Tylenol PM and hope for six straight hours. <o:p></o:p></p>
<p class="MsoNormal">When I’m feeling generally good (which is NOT today) I remind
myself that getting old is the gift that I hoped for after my diagnosis but, most
days, I just lob questions to people who’ve been down this road before, shed
some tears, and b*tch and complain about things. If I’ve learned anything in my
life it is that you cannot use logic to address an emotional issue. Well, you
can but you do so at your own peril. <o:p></o:p></p>
<p class="MsoNormal">Today, I’m imbibing no logic, just making myself feel relevant
by hanging all my reality on the outside because I know, I am absolutely
positive, that there is some other woman out there, feeling alone, a little sad
and a lot frustrated in her perimenopausal, pandemic-complicated life. <o:p></o:p></p>coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-44048517479366368692020-10-22T08:25:00.007-07:002020-10-22T12:58:52.853-07:00Relevancy.<p> </p><p>
</p><p class="MsoNormal">Today I’m struggling with relevancy. The relevancy of what I
do as well as the relevancy of who I am. <o:p></o:p></p>
<p class="MsoNormal">Beyond the emotional and logistical rollercoaster that is
launching children in the middle of a global pandemic with missed milestones
and unmet expectations; and beyond the likely normal “who am I after nearly two
decades of mothering two humans that are now outgrowing me?” the struggle around
what I do for a living has me flailing a little. A lot. <o:p></o:p></p>
<p class="MsoNormal">I am an advocate. A patient advocate. A community advocate. A
research advocate. A policy advocate. Sometimes I’m an independent advocate;
sometimes I’m attached to a non-profit organization; sometimes I’m employed by
a company that I feel shares the ethos of truly making a difference, not just
making a dollar. <o:p></o:p></p>
<p class="MsoNormal">Sometimes I have a fancy title; sometimes I’m just ‘patient advocate’.
Sometimes I get paid for the value I bring; sometimes it’s a volunteer effort.
Regardless, I’m always me and bringing my whole self to the table. I try and use
my voice to share information that can become knowledge and to build bridges
between people, resources and opportunities. And I help others find their
voices and build the confidence to use them. I connect people to people because
I believe that we can always learn from each other and are fundamentally stronger
in every way, shape and form, together. <o:p></o:p></p>
<p class="MsoNormal">I am perpetually grateful that my family and my situation affords
me the luxury of doing what I love to do and yet… <o:p></o:p></p>
<p class="MsoNormal">I am effing struggling. <o:p></o:p></p>
<p class="MsoNormal">How am I changing the narrative? I left my career after my
diagnosis because there was a gap (an actual abyss!) in cancer care. The world
was talking about Personalized Medicine but had forgotten to include the ‘person’
in the conversation. Over 1.5M people were being diagnosed annually with
cancer, in the US alone, and we weren’t learning what we could from their
experiences because data was being siloed and stories of real people and real
experiences were getting lost in the shuffle. <o:p></o:p></p>
<p class="MsoNormal">I wanted to change that. <o:p></o:p></p>
<p class="MsoNormal">I wanted to make a difference. <o:p></o:p></p>
<p class="MsoNormal">And, while I realize making a difference comes in all forms,
I don’t feel I’ve changed the narrative. Now we have over 1.7M people being
diagnosed annually with a cancer in the US. People are still dying. The
disparities in cancer care and outcomes remain stark. People are still calling during
that ‘oh shit’ moment after diagnosis; people are still experiencing financial
toxicity; people are still suffering through treatments that target cancer but
don’t consider the impact to the person’s whole self.<o:p></o:p></p>
<p class="MsoNormal">It’s ALL the things. <o:p></o:p></p>
<p class="MsoNormal">But mostly it’s the premature death. And mostly it’s the
fact that despite the efforts of myself, hundreds of advocates and thousands of
scientists, people are still suffering from cancers that we cannot control, never
mind prevent. <o:p></o:p></p>
<p class="MsoNormal">And, maybe after that, it is the narrative that cancer is
something to be ‘beaten’ when, in reality, cancer continues to fester and grow
inside most all of the 17M survivors, either literally with metastases and
progression or figuratively through the physical and emotional after “effucks”
of diagnosis and treatment.<o:p></o:p></p>
<p class="MsoNormal">That’s it. That’s the punchline. I am struggling. <o:p></o:p></p>
<p class="MsoNormal">I don’t need hugs or love or affirmation. I need to find my
place. I need to document my goals and objectives so that when I have these
crises of faith in what I’m doing, I can show progress. I’m sure it’s there. I
just can’t see it right now. <o:p></o:p></p>
<p class="MsoNormal">It may be the pandemic. It may be #Pinktober. It may be what
feels like a rash of new diagnoses among my previously non-cancer friends. It may
be compounded by kids in a launch phase. It may be the bizarre extended family drama. It may be the even more bizarre support group drama. It may be the beyond the pale bizarre political drama. </p><p class="MsoNormal">It may just be a really bad day. </p><p class="MsoNormal">But
it’s here. If I’m honest, it’s been here for months and I’m finally remembering
(AGAIN) that a bit of putting down my thoughts helps me get it out.<o:p></o:p></p>
<p class="MsoNormal">Once it’s out I can name it, look at it and begin to address
it. <o:p></o:p></p>
<p class="MsoNormal">As I’ve word vomited this post, Lisa B Adams has popped into
my head. She was the first individual I knew who was living while dying with metastatic
breast cancer. I found her posts a stark picture of the reality I wanted to
help change and yet I found her perspective on the world uplifting and
comforting. <o:p></o:p></p>
<p class="MsoNormal">Today I’ll choose to focus on her words. She shared them
frequently and they became a mantra for many of us in the advocacy community:<o:p></o:p></p>
<p class="MsoNormal"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUVW4yURFpexOw3Zi0rx1kcWQjd9MEoZKZ8sWBoX1M0QOmTlSCSEuhilUpE0bqC5xgmh0q86uN8JTqc69irV4YWY5ETH6XzBIhGa9N-GrYx_Fa09_hY8PjYVjJ6GsZp1zh1abu7Ot_J1Sl/s1200/Lisa_Adams.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="537" data-original-width="1200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUVW4yURFpexOw3Zi0rx1kcWQjd9MEoZKZ8sWBoX1M0QOmTlSCSEuhilUpE0bqC5xgmh0q86uN8JTqc69irV4YWY5ETH6XzBIhGa9N-GrYx_Fa09_hY8PjYVjJ6GsZp1zh1abu7Ot_J1Sl/s320/Lisa_Adams.png" width="320" /></a></div><p class="MsoNormal"><br /></p>Not sure of my place in the world today but I do know there is much beauty here. And I will find it. Or create it. And then I will share it. I will persevere. <p></p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p><br /><p></p>coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com9tag:blogger.com,1999:blog-3075583501809046053.post-56148724131459160582020-06-01T09:44:00.002-07:002020-06-01T11:36:59.415-07:00When a Hug Just Can't Fix It<br />
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 10pt;">I've
watched people die before.</span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">I've
held their hands, I've said goodbye.</span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">If
an end must come, and it must for all of us, then making that end beautiful and
peaceful feels the way to go.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">And
yet I have also railed mightily against death for my friends killed by cancer. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">My
friends taken before they had the benefit of seeing their kids graduate from
high school or in some cases, even kindergarten. And, in many cases, before those
amazing humans were able to have kids at all.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">But
I have never seen a man murdered, until I watched an officer of the law break
the law and take the life of George Floyd. In full transparency, I couldn’t
watch the entire thing. You can judge me for this but my pleading to the video “get
off of him, get off of him” was not helping him or me and I knew how it was
going to end.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">I've
been told before that I can't save the world and I remind myself that focusing
my advocacy<span style="mso-spacerun: yes;"> </span>in the cancer community
doesn't mean other issues aren't important to me - it just means I can't do it
all effectively.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">But
right now, I can't NOT advocate my fellow humans.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">I
fight tooth and nail for personalized treatments, accelerated research and
protective policies for individuals with cancer. But all the best treatments in
the world mean nothing if you cannot access them. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">And
access to the best treatments in the world mean nothing if you are truly afraid
of being murdered in broad daylight by an individual who has sworn to protect
and to serve. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">And
this is about so much more than police brutality. Racism doesn’t exist in a bubble.
Our “justice” system also unfairly targets people of color. Our health care
system is plagued by implicit bias as well as explicit racism. We have
significant wage gaps by race.<sup><a href="https://nwlc.org/issue/race-gender-wage-gaps/">1</a></sup> <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">The
civil rights movement happened well before I was born but racial inequity
persists in every single facet of our society.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">I’ll
stay “in my lane” for a moment and share that, health disparities are rampant in
the cancer community.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">Over
twenty years after a groundbreaking breast cancer drug was approved, black
women with breast cancer are still sometimes not offered the treatment. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">In
fact, “after adjusting for tumor characteristics, poverty and patients’ other
medical problems, black women were 25 percent less likely to get trastuzumab
than white women.”<sup><a href="https://www.reuters.com/article/us-health-breastcancer-race-disparity/many-older-black-women-miss-out-on-targeted-breast-cancer-drug-idUSKCN0XC2TM">2</a></sup> <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">This
is the treatment (also known as Herceptin) that not only changed the game on
HER2+ breast cancer but is the documented standard of care. Yet, if you are a
black woman, you may receive sub-standard of care. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">Not
only are black women frequently diagnosed with breast cancer at a more
advanced (worse) stage than white women,<sup><a href="https://www.cdc.gov/cancer/dcpc/research/articles/breast_cancer_rates_women.htm">3</a> </sup>African Americans have the
highest mortality rate of any racial and ethnic group for all cancers combined
and for most major cancers.<sup><a href="https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlid=16">4 </a><o:p></o:p></sup></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">To
spell that out for everyone, being black means you are more likely to die from cancer.
<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">The
National Cancer Institute has a plan <sup><a href="https://www.cancer.gov/about-nci/organization/crchd">5</a></sup> to address these cancer health
disparities but these issues don’t magically pop up when someone is diagnosed
with cancer and then go away after treatment. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">This
is our society. This is what we’ve created. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">And
it’s not okay.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">While
studies have not gone so far as to label stress a carcinogen (cancer causing),
stress has been implicated in the acceleration of cancer metastases <sup><a href="https://www.nature.com/articles/ncomms10634">6</a></sup>
(spread) and in this meta-analysis, work stress was called out as having a role
in the increased incidence of cancer.<sup><a href="https://pubmed.ncbi.nlm.nih.gov/30484859/">7</a></sup> <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">What
could possibly be more stressful than waking up every day knowing that you, while
living in a country that claims, “all men are created equal,” face a persistent
threat to your very survival based on the color of your skin?<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">When
the 2016 election didn’t pan out as I’d imagined, and our country elected an
individual renowned for misogyny among so many other things I do not support, I told my daughter, “The sun will still rise
tomorrow morning.”<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">And
the next morning, I shared this with my community:</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><br /></span></div>
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<i><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">So
the sun did indeed rise this morning.<o:p></o:p></span></i></div>
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<i><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">K
stayed up as the results were finalized. Ri's first question was, "Who
won?" Both kids have been actively involved in this election and now have
similar concerns about what the next four years might bring.<o:p></o:p></span></i></div>
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<i><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">And
while our breakfast conversation addressed concerns and fears, we instead
focused on the reality that we, as individuals, have as much influence as we
had yesterday. As always, we need to use our influence for good, not evil. And,
we need to ensure that in our immediate sadness, frustration and fear we do not
turn into individuals who denigrate other individuals. Instead, we need to love
more vocally, stand up for what we believe in more overtly, use our voices to
reinforce what we feel is right and speak out against what we feel is wrong.<o:p></o:p></span></i></div>
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<i><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">This
is how we put one foot in front of the other with respect for ourselves and
respect for others.<o:p></o:p></span></i></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVimuNRjDgeN5JMA8WOI64zBFfV8R0OL-Vjyozf1yvHePSJ09lRcTghlo-Sr1cZTrnodICXUsOPNrugZM8q2TGNkOCuKb3fke_4AmMfCs0c6fPYz4fn0GWLtF-Q7WkLSA77ptx6Hb9xst6/s1600/11_9_2016.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="659" data-original-width="999" height="211" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVimuNRjDgeN5JMA8WOI64zBFfV8R0OL-Vjyozf1yvHePSJ09lRcTghlo-Sr1cZTrnodICXUsOPNrugZM8q2TGNkOCuKb3fke_4AmMfCs0c6fPYz4fn0GWLtF-Q7WkLSA77ptx6Hb9xst6/s320/11_9_2016.png" width="320" /></a></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">We
now find ourselves in the middle of Santa Clara, under both a Shelter-in-Place
order triggered by a microscopic and deadly coronavirus enemy, and under a
7-day curfew that was ultimately triggered by the murder of a human being after years, decades and centuries of inequity in our society.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">I
have confidence in science that we will be able to address the first threat of
COVID19 but the biggest threat to our society and, ultimately our humanity, is
the way we treat our fellow humans. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10pt;">Fundamentally I believe that hugs are magical and are frequently the remedy to what ails us. </span><span style="font-family: "arial" , sans-serif; font-size: 10pt;">And,
as much as I love a good hug, hugs alone will not fix this. It takes voices and actions. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">I
have raised my children not to tolerate the intolerable and the racism in our
country is not, and has never been, tolerable. From the education system to the
health care system to the very obvious police and justice system – we are NOT a
united nation. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;">There are over 300 MILLION people in this country. We don’t have
to agree on everything and we don’t have to look the same to become united, but
we cannot look away and we must speak up. </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10pt;"><b>Black Lives Matter.</b></span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.3333px;"><i>And, if you are going to be an advocate, you may want to consider something else that I've learned in my last seven years as an advocate in the cancer community - advocating is not just about speaking up once or twice. </i></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.3333px;"><i><br /></i></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.3333px;"><i>True advocacy takes consistency, persistence, an open heart and a thick skin. </i></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><b><br /></b></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgavqeqaUJ2rwc5WQkJ8mh2D22vglM2mHjN5VSOerRZinfL2JrE1Pxl1HYWRQZpvi0IhyphenhyphendO_GLiPj-JTRkwRO7o24gTPFZ0VWW5XWbq0cFqpohsaYE0Lq7nMoHSccjwzRfJfFbR5ObWleas/s1600/hands.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="194" data-original-width="259" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgavqeqaUJ2rwc5WQkJ8mh2D22vglM2mHjN5VSOerRZinfL2JrE1Pxl1HYWRQZpvi0IhyphenhyphendO_GLiPj-JTRkwRO7o24gTPFZ0VWW5XWbq0cFqpohsaYE0Lq7nMoHSccjwzRfJfFbR5ObWleas/s1600/hands.jpg" /></a></div>
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<span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><b><br /></b></span></div>
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</div>
<ol>
<li><span style="font-family: "arial" , sans-serif;"><span style="font-size: x-small;"><a href="https://nwlc.org/issue/race-gender-wage-gaps/">https://nwlc.org/issue/race-gender-wage-gaps/</a></span></span></li>
<li><span style="font-family: "arial" , sans-serif;"><a href="https://www.reuters.com/article/us-health-breastcancer-race-disparity/many-older-black-women-miss-out-on-targeted-breast-cancer-drug-idUSKCN0XC2TM)"><span style="font-size: x-small;">https://www.reuters.com/article/us-health-breastcancer-race-disparity/many-older-black-women-miss-out-on-targeted-breast-cancer-drug-idUSKCN0XC2TM</span></a></span></li>
<li><span style="font-family: "arial" , sans-serif;"><a href="https://www.cdc.gov/cancer/dcpc/research/articles/breast_cancer_rates_women.htm"><span style="font-size: x-small;">https://www.cdc.gov/cancer/dcpc/research/articles/breast_cancer_rates_women.htm</span></a></span></li>
<li><span style="font-family: "arial" , sans-serif;"><a href="https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlid=16"><span style="font-size: x-small;">https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlid=16</span></a></span></li>
<li><span style="font-family: "arial" , sans-serif;"><a href="https://www.cancer.gov/about-nci/organization/crchd"><span style="font-size: x-small;">https://www.cancer.gov/about-nci/organization/crchd</span></a></span></li>
<li><span style="font-family: "arial" , sans-serif;"><a href="https://www.nature.com/articles/ncomms10634"><span style="font-size: x-small;">https://www.nature.com/articles/ncomms10634</span></a></span></li>
<li><span style="font-family: "arial" , sans-serif;"><a href="https://pubmed.ncbi.nlm.nih.gov/30484859/"><span style="font-size: x-small;">https://pubmed.ncbi.nlm.nih.gov/30484859/</span></a></span></li>
</ol>
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<br />coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-79376565854846057902020-01-12T11:45:00.001-08:002020-01-13T07:26:07.368-08:00But it’s a Cat Bite, not Cancer<br />
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">What started out as a challenging emotional time in our first week
of 2020 morphed pretty quickly into a challenging health care time. I’ll preface
it all with, I am now fine and, the short story is, I have an infection that I needed
some help combating.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">If you’re interested in the longer version of the story, complete
with healthcare frustrations, wins and ridonkulousness please feel free to read
on. But please know, it’s a cat bite, not cancer. <o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">As many of you know, our 12 yo family cat,
Polymer Fishbone died on January 4<sup>th</sup>, right after we returned from a
family vacation to Colorado. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJq78wiDW3Bw9b3-rEYPET1e5Bm5naR7VFnwTo7vvMQbRUKqUky67FyjfOTrkv1ZRwPp70u0So2GwqlzV3SuIafgJXTvoSJ-hXR90SAXYiJ6oCXlQ1dKnpJ2InpC7fEqNDBtgUFR7RHShn/s1600/polymer.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="492" data-original-width="512" height="307" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJq78wiDW3Bw9b3-rEYPET1e5Bm5naR7VFnwTo7vvMQbRUKqUky67FyjfOTrkv1ZRwPp70u0So2GwqlzV3SuIafgJXTvoSJ-hXR90SAXYiJ6oCXlQ1dKnpJ2InpC7fEqNDBtgUFR7RHShn/s320/polymer.jpg" width="320" /></a></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Even that is a much longer story but, when we landed at SJC, a
friend picked me up from the airport to take me directly to the vet. My hope
was that we were picking up our family cat who had become dehydrated in our
absence. Unfortunately, things were much worse than dehydration and the
prognosis was grim. Brandon and the kids met me at the vet and we decided to
take him home for one more night. He was not very lucid and we placed him in
our bed that night where he's slept for the past 12 years. At 3am he
suddenly woke and was highly agitated. He began to move wildly and, as I cradled
his head to move him to a more comfortable position, he bit me on my left index
finger. <o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I didn't think too much of it, rinsed it, wrapped it and went back
to caring for the cat. </span><span style="font-family: "calibri" , sans-serif; font-size: 10pt;">He died in my arms as we entered the vet clinic the next morning.</span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">As you might imagine, our house was, and continues to be, quite
sad over this loss. <o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Saturday afternoon, my finger started to throb and I took a quick
look under the Bandaid. Eww. Worse than I thought. My husband and daughter
said, “Hmmm… when are you going to the doctor for that?” I explained that it
was fine and I was going to my oncologist on Tuesday for a six month check-in,
so she could let me know if I needed to see someone. <o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">On Saturday night, I tried to go to bed early since the evening
before had been so fitful, but the pain in my finger was then unbearable. Truly
unbearable even when compared to the myriad of other surgeries, procedures and
recoveries I have experienced. <o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I recognized this wasn’t a great sign.<o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">At 11pm, after my husband was in bed, I took myself to the
emergency room. To the friends who have heard this part of the story and suggested,
“You should have called me,” I offer my sincere thanks. My husband would have
taken me too. <o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I didn’t ask. <o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">In all honesty, I was embarrassed going into the ER for something
as simple as a cat bite and knew my family needed some rest. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">As embarrassed as I was going in for “just a cat bite,” I became even
more embarrassed when I was triaged, immediately given a room in front of all
those sick people and told that I should have come in right away. Since I am
allergic to penicillin, I was given two broad spectrum antibiotics Doxycycline
and Clindamycin and told to come back to the ER if anything worsened. <o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">A truly efficient and, dare I say, delightful ER experience which
feels like a rarity these days.<o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I was home before midnight and took my first dose of both medicines.<o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">In the morning, I again happily took my dual meds thinking all
would soon be well – my only concern the gut issues that would soon follow a
rigorous course of antibiotics.<o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Sunday was a very slow day and I assumed much of my slowness was
due to sadness and lack of sleep but, late Sunday night my hand began to look
worse. I combined Advil and Tylenol and tried to make an appointment for Monday
morning, wanting to avoid the sicky waiting room of the ER. <o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">When I tried to make an appointment online, I was told the first
available was a Wednesday 1/8 morning time. Even after I opted to see “any provider”
the first appointment the system offered me was on Wednesday. I assumed it must
just be a glitch with the portal, so I chose to call first thing on Monday. <o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I drove into work and called as soon as the office opened and
requested a same day appointment. I was told the earliest I could be seen was Wednesday.
After I explained the situation, the scheduler said she’d speak with my primary
care physician and call me back. Three hours later, she called me back and let
me know I could come in at 2pm to the Internal Medicine Clinic. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Honestly, I’m not sure what I expected but I definitely didn’t
expect what went down next. As I explained the happenings of the past three
days, the physician looked at me, looked at the wound, called the hand surgeon
and said she was giving me “an e-consult to the ER.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“The ER?!?” I was not a fan.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“You need to have intravenous antibiotics and you have to be in a
bed to get them,” she said.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“Can’t I just come back later, when there’s room somewhere?” I
pleaded.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“No, this is the way we have to do it. I’m sorry. But you’ll have
an e-consult so they’ll be expecting you.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">They were expecting me alright but I was NOT expecting a
completely full emergency department. And I was NOT expecting the level of
illness I was going to be sitting with while I waited to be triaged.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">This was the last full day of my son’s winter break and my
daughter was home for a few more days before heading back to college – this was
NOT AT ALL the way I wanted to spend my time. I asked whether I could just come
back, “when it is less busy.” <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">The otherwise nice woman laughed, “Unfortunately no, let me get
your vitals.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“I just had my vitals done 50 minutes ago. Can we just use those?”
I asked eager to get into the queue at least.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“No, we have to do them again. We have to do everything again. If
you had an EKG upstairs, we’d have to do another down here,” she explained. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“That’s ridiculous,” I pause, remembering I needed to make nice with
the people who get things done down here. Like prison rules, or so I imagine,
but different. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“So, if I can’t leave and come back when you’re ready for me,
could you give me an estimate of the wait so I can tell my family? We didn’t
expect I’d be staying.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“Well?” she looked up a bit, squinched her face and said, “people
have been waiting for a couple of hours.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Thinking that most, if not all, of the patients she sees are at
least as impatient as I am and likely much sicker, I gave her an empathetic
smile and deep sigh, “It must be really hard to work here some days.” <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">No response.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Temp, blood pressure and check-in complete, I was sent to the big
room where 30+ people were sitting/lying in various states of concerned
illness. They ALL looked sicker than I felt. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I chose a place in the corner of the room where there were few people
and as far away from the individual who sounded like he was simply waiting to
be diagnosed with tuberculosis. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I need to pause here to say, as a general public service
announcement, <b>“Cover Your Damn Mouth When You Cough”</b> because guess what?
There are some grown arse adults, who are most definitely very ill, who do not
cover their mouths when they cough.<o:p></o:p></span></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">To pass the time and find validation, I took to Twitter sharing
that, after all the talk of how misuse of emergency department resources is a
huge issue (i.e. people going to the ER when they should make an appointment
with their primary care doc), I had played by the rules and the ED was about to
be misused anyway. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEzcFPP6eZEe5Gg5wbyUwfn7hbXKPvZvGaiou8_odTE71JwulypFvO9pmBuNdF1Huf02FpYwEBjQ-NVNJsqgldwyWGjO5QmiJqk0TwdTcsNSf6FL2NkdjLLN7Q6JNtnMJlypnElatOjTSm/s1600/ER+tweets.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1277" data-original-width="1079" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEzcFPP6eZEe5Gg5wbyUwfn7hbXKPvZvGaiou8_odTE71JwulypFvO9pmBuNdF1Huf02FpYwEBjQ-NVNJsqgldwyWGjO5QmiJqk0TwdTcsNSf6FL2NkdjLLN7Q6JNtnMJlypnElatOjTSm/s320/ER+tweets.png" width="270" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">After one hour of waiting, and immediately after the <i>newest</i>
vomiting patient puked, I began composing a letter to the leadership of the hospital,
sharing my frustrations at this operational nightmare. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I sent it off at the two-hour wait mark.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Within 20 minutes, two things happened. I was called into the
screening room and I received a message from one of the individuals I’d emailed.
She was sorry to hear about my cat; sorry about the health care inefficiencies and
that another member of the leadership team was checking with the ED director. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">It felt good to be heard. You shouldn’t have to know someone to
get quality timely care but, in the end, I’m glad I know some people.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Screening was screening - blood draws mostly since all the details
were in the e-consult. The nurse working with me was a visiting nurse and had only
been working there one week because the caseload was overwhelming the regular
staff. He was going to put my IV in since we knew I was going to receive IV
antibiotics but some discussion behind the curtain made it clear I would be
sent back out to the waiting room until a room was ready. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Queue my <i>not happy</i> face.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">He took culture vials and then I heard another backroom conversation
– I was being taken to a room and would <b><i>not</i></b> be sent back to the <s>room
of unfettered contagion</s> waiting room. I think my email was making the
rounds. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I was taken to room 31. It had a door, something I would soon
learn is an absolute gift in the ER. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">It was 5:35pm. Four hours had passed since I’d entered the
hospital parking lot that afternoon. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="line-height: 12.0pt; vertical-align: top;">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Right
about that time, my husband finally read the text I’d sent hours earlier, <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 12.0pt; vertical-align: top;">
<br /></div>
<div class="MsoNormal" style="line-height: 12.0pt; vertical-align: top;">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“Went to the doc. They've sent me back to the ER... I hate
healthcare ridiculousness like this”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">His response, “Oh my! I just saw this.
Where are you now?</span>”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I don’t know about you, but I can’t just text, “I’m in the ER dammit,”
without adding more context so I was getting ready to call him when the doctor
came in to explain what would happen in the next several hours. First and foremost,
I’d be spending the night – likely in this very room since there was no room <s>at
the inn</s> upstairs on the ward. I would be given a couple broad spectrum IV
antibiotics, as yet to be determined, since cultures wouldn’t be back for days.
And he was going to lance the ‘felon’ in my finger. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Yep, it’s actually called a ‘felon.’ <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">And this was really beginning to feel even more prison like. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I called Brandon as soon as the doc left, “Hey where are you?” he
asked innocently.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“I’m in the ER dammit,” I choked out and started to cry.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Whether it was fear or frustration or just finally having someone
to lean on that did it, I’ll never know but letting some of that out felt good.
We talked briefly, I caught him up and he asked what he could bring me since I
was having a sleepover in the sicky house. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="line-height: 12.0pt;">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I ended our call when the nurse
walked in to start my IV. As I’m getting my mainline installed, my daughter,
who had been out with a friend all day, texted, “Yall
dead?”<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 12.0pt; margin-bottom: 4.5pt;">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I had been texting with my son letting him know I was still at the
hospital so he didn’t worry and until I had something concrete to share but I
hadn’t talked to my daughter all day. She’d just come home to an empty home<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“No one’s dead. I just had a little {healthcare
facility} speed bump and Dad's bringing me some food.”<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 12.0pt;">
<br /></div>
<div class="MsoNormal" style="line-height: 12.0pt;">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Then the phone rang. I asked the
nurse to hold off a sec, picked up my daughter’s call and explained everything quickly.
She asked if she could come by and told her to wait 15 minutes or so before
heading over because they were going to “lance my felon.” My children (and
husband) aren’t nearly as into the surgical/blood/procedure thing as I am.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 12.0pt;">
<br /></div>
<div class="MsoNormal" style="line-height: 12.0pt; margin-bottom: 8.0pt;">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">IV
was inserted and the nurse came back in with a bag of antibotics to get the
show on the road. I was hopeful I could be out before dawn. But, when she
scanned my wristband and the bag, antibiotic #1 was a non-starter – they’d
already changed my prescription. One wasted bag of IV antibiotics. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 12.0pt; margin-bottom: 8.0pt;">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaNzsboUyQxY1u0aeyK21UCVtYq1j58QcyYavLUHWt6X-YILHjJz_raPQzzf9Olkr5t-tgUUP289-QlWUtFiIhRUVmIzJjGjc9uS5T8GvQWLX4D-Kcp_4rLuU2IsBVpMLYLsi4so-ec5AR/s1600/erborading.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaNzsboUyQxY1u0aeyK21UCVtYq1j58QcyYavLUHWt6X-YILHjJz_raPQzzf9Olkr5t-tgUUP289-QlWUtFiIhRUVmIzJjGjc9uS5T8GvQWLX4D-Kcp_4rLuU2IsBVpMLYLsi4so-ec5AR/s320/erborading.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNormal" style="line-height: 12.0pt; margin-bottom: 8.0pt;">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My husband and son arrived with food at the same time the doc was injecting
my finger with some lidocaine in order to go after my finger felon so I
suggested they wait in the hall before we started dinner. My daughter arrived
shortly after, as I was being bandaged up. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">As the bloody detritus of that little procedure was removed from
the procedure tray, we converted it to a mini table of sorts. Dinner was served.
A few spoonfuls of Tom Yum soup was all I could really handle but oddly had a
moment of gratitude having my whole family together despite the circumstances. Neither
of my children enjoy, or even can really tolerate, the hospital so it meant a
lot that they had come. My son, none worse for the wear, or so it seemed, ate voraciously
but my daughter declared “I do not eat in ERs.” Wise young woman. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My 7pm – 7am nurse arrived, introduced himself and brought me my
first dose of cefepime. The IV pump was low on batteries, and he couldn’t find
another, so we let it free pour. One dose down in ~20 minutes.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">When I mentioned the “unbearable” pain I’d experienced Saturday
night that drove me to the ER, I hadn’t actually experienced a “felon lancing.”
A double shot of lidocaine took some of the edge off as he was digging around
and “opening the pocket” but it was short lived. As in, we didn’t make the
hour. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My good humor started to wane and Brandon found the nurse.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“I’m pretty uncomfortable,” I explained. Cheerfully he said, “I’ve
got morphine, Tylenol and Ibuprofen.” <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I said, “I’m pretty uncomfortable, but I don’t think I need morphine.”
<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">He went through the standard rigmarole about “getting on top of
the pain” and being wary of “breakthrough pain.” I relented and he said he
would be giving me 4mg of morphine via my IV.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“Wait. Wait. WAIT!” I said, “I’ve never had morphine before, can I
have a half dose instead?”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">A lot of blah, blah, blah as he re-explained getting on top of
pain but he agreed to give me 2mg and then I could “have the rest” if that didn’t
work.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I hate the sensation of pain meds via IV – it comes on fast and I
always feel like my heart is going to stop with the injection. And then it
spreads out. Morphine is no different in this way.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Fifteen minutes later I ask for Tylenol. “I’m still uncomfortable,”
I explained. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I watch my husband leave the room and explain to the nurse that,
in my vocabulary, the word ‘uncomfortable’ means I’m in pain. The nurse walks
back in to ask for my pain number 1 – 10. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">When I cannot answer right away, my son points to the handy dandy
facial expressions on the rubric. “Mom, your face is all scrunched up like that…”
<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“Okay, I’m a seven,” I say.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“I’ll bring you the other 2mg.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“But the first two didn’t really fix the pain, they just made me
feel drunk,” I said.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“Morphine changes the way your body thinks about pain,” he
responded.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">To my narco-ed out brain, this statement was pretty profound. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I will not go into detail about the conversations I had with my
family on the full 4mg of morphine but they all sure thought it was amusing. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My family left to let me try and get some sleep and I was soon
attached to my first dose of Vancomycin, another broad-spectrum antibiotic. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My time recall is likely a little off on this one, blame the
morphine. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">But I do know that within minutes after the drip started, I
shifted in my little gurney bed to take a little snooze but soon realized I was
scratching my head and the back of my neck. I remember thinking, “Weird. Did I
get lice from the ER?”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">It took me a few minutes to register what was going on and to
press the call button, “Can I help you?” said the voice in the wall.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“Um… I’m crazy itchy.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“Someone will be right there.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My nurse came in immediately, “You’re having a reaction to the
Vancomycin,” he said calmly as he stopped the IV drip. “Where do you feel it?”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“Just my head and neck,” I replied, actively scratching. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“I’m going to give you a dose of Benadryl.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">When he walked back in with a syringe, I was surprised and made
some dumb comment about everything going through IV in the ER.<o:p></o:p></span><br />
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Dude. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My most profound learning? No one needs morphine if they have a
dose of IV Benadryl. Lights were going out quickly but I grabbed my phone and
texted my husband at 8:42pm: <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="line-height: 12.0pt; vertical-align: top;">
<span class="tl8wme"><i>Allergic reaction tonVancomy in. Hella itchy. Now
have benadryl. Feels stronger than moorpjine</i></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Lights OUT.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">When I woke a bit later, I got to thinking about my reaction and a
conversation I had years ago with a friend being treated for metastatic breast
cancer. She found that some of her side effects went away when she was infused
at a slower rate. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">When my nurse came back I asked if he thought that my reaction was
because of the ‘free pour’ and he said he’d talk with the doctor. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">At 10:10 we restarted the Vancomycin at a very slow rate, which I shared with my husband in case things went sideways: </span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0eUk3uoQxUeas6VB6DoL0MoOMC8A60lp0uu1FQexKjTpyZR4nTeZPgvRd2eLI7WNJfUNOboLLkF1VL9Mb4EGnoowNwnm-FR1uPW5PyWjLQiI-jSdIplj8hJ_f6Oe8F72ODtsN6sdsfHTm/s1600/Benydryl+text.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="532" data-original-width="526" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0eUk3uoQxUeas6VB6DoL0MoOMC8A60lp0uu1FQexKjTpyZR4nTeZPgvRd2eLI7WNJfUNOboLLkF1VL9Mb4EGnoowNwnm-FR1uPW5PyWjLQiI-jSdIplj8hJ_f6Oe8F72ODtsN6sdsfHTm/s320/Benydryl+text.png" width="316" /></a></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">No
issues and I went to sleep.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">At 11:30 I was woken up by a sweet young woman, “Ms. Tinianov, I’m
here to take you for your cat scan.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">It took me a minute but I responded, “You have the wrong patient.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">If you know me, if you’ve seen me in a healthcare setting, you
know that I am an “ask-everything-all-the-questions-and-what’s-our-plan” kind
of girl. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">We’d had a changing of the rounding doc guard and the new
physician had come to introduce herself but there was no mention of a cat scan.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My would-be radiology escort left and could be heard in the hall
saying to the charge nurse, “31 says she’s not supposed to have a cat scan.” <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">The response voice said something about x-ray and the woman
returned to my room, “Ms. Tinianov, I’m here to take you for your x-ray.” No
mention or explanation of the earlier error, just a let’s-start-fresh kind of
attitude.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Again, none of the docs I’d seen upstairs or down had mentioned an
x-ray so again I balked.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My nurse came in and asked whether there was an issue and I explained.
He looked in my chart and said, “Oh yes, looks like {new doctor} ordered an x-ray.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“Okay”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">When my escort returned, I followed her but, as we wound our way
around the department toward radiology, I stopped. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“I still don’t understand. Why am I having an x-ray? Nothing is
broken. I had full mobility until the swelling got really bad.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“So, do you want to talk to the doctor?” she asked perhaps a bit
incredulously.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“I do.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“So do you want me to take you back to your room?”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“Yes please.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">At 1:05am {new doctor} walks in and asks why I don’t want an
x-ray.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“I just don’t understand. I’ve seen four docs today and no one
mentioned an x-ray,” I explained.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“Well {old doctor} thought you should have one to check and make
sure nothing was left in there, like a tooth,” she said boldly.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">We could blame it on morphine but that was likely long gone after 6
hours but I instantly didn’t trust this woman. Not as in a fear for my life
kind of distrust but, to be clear {old doc} had been incredibly communicative
about what was happening, why it was happening and asking if I had any
additional questions. He had not ordered an x-ray and not told me. I am sure of
this. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I deferred. And if, in a few weeks, a tooth pops out of my finger,
well… that’s on me.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">More sleep in my tiny sleeping space which, by the way, didn’t
have bars. Had I enjoyed morphine, this could have been a problem. Just sayin. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkK5A1is_ZRyBUxNx58bKgalWXnZnLY61e-g6S8ZeFxeAAJTO2JOnfYAnSO1zhcpHHk0cN7_Hg89JSLZhiZDYJrTqeEMk4DV-Ewk6NC66Cek2dMVaI5VBjZ52zmb6Fqv65KprgTS0wDaSv/s1600/20200107_011023.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkK5A1is_ZRyBUxNx58bKgalWXnZnLY61e-g6S8ZeFxeAAJTO2JOnfYAnSO1zhcpHHk0cN7_Hg89JSLZhiZDYJrTqeEMk4DV-Ewk6NC66Cek2dMVaI5VBjZ52zmb6Fqv65KprgTS0wDaSv/s320/20200107_011023.jpg" width="320" /></a></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">At 3:15am I woke. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My hand hurt but really it was the cacophony in the next room that
wrestled me from slumber. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">The cast of characters, beyond the ones hacking up lungs, included
an very irritated individual who thought they had swallowed fishbone; an individual
who kept getting out of bed seemingly just so they could push their call button
and have someone help them back in; an individual who had had a severe fall
likely due to her continuous state of inebriation. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">At 3:40am we started round 2 of cefepime and I took Ibuprofen and
Tylenol. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Not much to report after this, blood work for kidney functions
required another stick. I was overtly fascinated that everything in the ER came in its own single use, plastic wrapped package. Sterile, fast and a ton of
waste. Not complaining, just observing. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">7am brought a new nurse and a new doc and a woman cleaning parts
of my teeny room. During her quick sweep, she found the culture vial from the
day before – no one had taken it anywhere. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“Please don’t throw that away,” I said. “Can you give it to the nurse,
that’s my culture?!?”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">No words. </span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Everybody was waiting to see what was growing in my wound
so we could treat it effectively and it almost ended up in the biohazard bin.
Absolutely no words. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I was all out of good humor by this point and just waiting on the hand
surgeon from yesterday so asked the new nurse, “What’s the plan and when can I
go home?”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">When the hand surgeon arrived, she explained that I would need to
pack my wound three times a day because we needed it to “keep it open and heal
from the inside out.” When I explained I didn’t know how to pack a wound she
said, “The nurse will show you.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">If it hadn’t been my body parts that we were talking about, the next conversation that happened
outside of my room would have been amusing.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Hand Surgeon to my nurse: “31 needs her finger cleaned out and packed.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My nurse: “okay.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My nurse to another nurse: “Can you take 31? She needs her wound
cleaned and packed.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">New nurse: “I’ve never done that before. Can you show me?”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My nurse: “It’s easy. Just use the quarter inch packing strip.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Me (in my head): Oh $hit.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">When the new nurse came in and said, “I’m going to pack your wound.”
I could not help but respond, “So… we’re going to learn together?”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">When we started soaking it, I noticed that the other puncture
looked worse and wasn’t draining into the “big pocket” so I asked for her to
have the doc look at it. There was much consternation at the nurses station
since the hand surgeon had already left. I explained I didn’t care who looked
at it but I wanted that second pocket lanced and drained before I went home
responsible for keeping a wound open when it was very obviously closed. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Another long story shortened, ER doc #3 was a rockstar. I asked,
he delivered. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Efficient, effective and with good humor. He also explained that, after several conversations with infectious disease, we were going to put me on
oral Moxifloxacin, a Fluoroquinolone because, with my drug allergies, this
looked like the best bet. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I balked, “But I had a reaction to Ciprofloxacin, it’s the same
drug class.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">“I know,” he said. “But we believe that it is the best drug for
you since you cannot take penicillin drugs. And based on your previous
reaction, we think you’ll be okay. If you start to have a reaction, take Benedryl<o:p></o:p></span><span style="font-family: "calibri" , sans-serif; font-size: 13.3333px;">.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">My previous reaction (over 20 years ago) had been soft tissue swelling that affected
the palms of my hand, the bottoms of my feet and edema in my knees and elbows.
I was not a fan of trying this out but, based on my allergy history and typical pathogens in a cat
bite, my choices were to be on this slightly scary oral or to have a PICC line
for IV antibiotics at home.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span></div>
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">So
after the doxycycline, clindamycin and the IV cefepime and vancomycin, I'm now
on oral moxifloxacin.<o:p></o:p></span><br />
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span>
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Thankfully,
the misplaced and almost trashed culture vial must have ended up at the lab
eventually because cultures came back positive for Pasteurella multocida Wednesday
morning confirming I am on an antibiotic actually effective against this bacteria. The past five days have been filled mostly with naps and wound cleaning. Shout out to my daughter for being a fabulous discomfort distraction and streaming old episodes of <b><i>Nailed It</i></b> and <i><b>The Voice</b></i> as a great distraction during the yuckier parts of this week. Sorry that her last week home wasn’t filled with more fun but grateful for the love. <o:p></o:p></span><br />
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span>
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">In short, the
new year has not unfolded in any way I would have expected or imagined that I
could have enjoyed but I</span><span style="font-family: "calibri" , sans-serif; font-size: 13.3333px;">’m on the mend and </span><span style="font-family: "calibri" , sans-serif; font-size: 10pt;">have learned a lot:</span><br />
<br />
<ul>
<li><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I’ve
learned that a simple cat bite is no joke.</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 10pt;">I’ve
learned that ED/ER misuse/resource drain is sometimes not at all misuse from
the patient side.</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 10pt;">I’ve learned a new meaning for the word felon and made the appropriate link between prison and the ER.</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 10pt;">I’ve learned I hate morphine but Benadryl is awesome.</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13.3333px;">I’ve RE-learned that self-advocating is hard, especially at 3am when you’re wearing a hospital gown.</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I’ve learned that I'm the kind of badass that can pack her own wound without vomiting.
</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">I’ve learned that “massage” in the wound care clinic is NOT a comfortable
thing.</span> </li>
</ul>
<br />
<span style="font-family: "calibri" , sans-serif;"><span style="font-size: 10pt;">And, I've learned that I'm grateful for healthcare, and the people who work in healthcare, regardless of the </span><span style="font-size: 13.3333px;">imperfections</span><span style="font-size: 10pt;">. </span></span><br />
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><br /></span>
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">As I’ve told several people, I am winning at life and planning a do over of the
first couple weeks of 2020. <br style="mso-special-character: line-break;" />
<!--[if !supportLineBreakNewLine]--><br style="mso-special-character: line-break;" />
<!--[endif]--><o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;"><b>SIDE NOTE:</b> </span><span style="font-family: "calibri" , sans-serif; font-size: 13.3333px;">I’m the type of person that has to park in the same spot everyday or she forgets where she parks but, </span><span style="font-family: "calibri" , sans-serif; font-size: 10pt;">I shared my teeny tiny gurney bed with my computer bag and
purse (as evidenced in the pic above). At every interesting and semi-conscious moment, I grabbed
my phone and typed little notes into a draft email. </span><span style="font-family: "calibri" , sans-serif; font-size: 10pt;">Part of me wanted to just post that draft email itself since it is
VERY clear, and pretty amusing, as to when I was being affected by morphine and
Benadryl but there are way too many names and identity reveals so I’m just
using that as notes. </span><span style="font-family: "calibri" , sans-serif; font-size: 10pt;">That said, here are a couple that I pulled because I thought they
were amusing and innocuous:</span></div>
<div class="MsoNormal">
</div>
<ul>
<li><i><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Cat scan for a cat bite? nono bo.</span></i></li>
<li><i><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">{name redacted} best nurs sEVAH</span></i></li>
<li><i><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Another stick at 4:10am to check kidney functions. Iv only working
one way flow.</span></i></li>
<li><i><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">5:55 97/61 & no fever because tylenol and ibuprofen </span></i></li>
<li><i><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">7:15. New doc. Old doc didn't say goodbye.</span></i></li>
<li><i><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">7:20 cleaned my room and she found culture from yesterday
evening </span></i></li>
<li><i><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">740 hand doc came by. </span></i><i><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Soak and pack s</span></i><i><span style="font-family: "calibri" , sans-serif; font-size: 10pt;">oak and pack</span></i></li>
<li><i><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Nurse from the other room " I've never done that before. Can
you show me how?"</span></i></li>
<li><i><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt;">Consult with unfe to us disease</span></i></li>
</ul>
<br />
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<br /></div>
<div class="MsoNormal">
<br /></div>
<br />coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-73849763136569137742019-11-01T08:14:00.002-07:002019-11-01T09:53:21.015-07:00October is Over<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
October is over.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
*long exhale*<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
October is a hard month filled not only filled with breast
cancer reminders and pink ribbons but also with dissonance and discord across
the cancer community. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Besides cheap candy, October is filled with grief, frustration, anger and sadness for me. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While I spend eleven months of every year pushing, pulling,
prodding and pleading for acceleration of research and access to quality care
for all cancer patients, I always seem to take a step back in October. Never
intentionally, it just unfolds that way. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Every August, I create elaborate plans to share personal
stories of fellow breast cancer advocates and friends in the breast cancer community.
Every September I think through how I might explain the difference between
patient, research and policy advocacy to those who otherwise don’t make a
distinction. And every October 1<sup>st</sup>, I find myself overwhelmed by the
noise that has become, for many of us #Pinktober.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Calls to “Save the Ta Tas” mixed with “Think Before You Pink”
drowned out by the knowledge that, despite every advocate’s best efforts, over
100 people die EVERY DAY from breast cancer. After six years in the community,
many of these people are not just statistics, they are my friends. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then there is the dissonance & discord between the patient/survivor/thriver
community which tears me apart every time. People diagnosed with early stage disease, desperately
trying to get through their day-to-day treatments and trauma who find themselves verbally facing
off with people diagnosed with metastatic disease who are doing the EXACT same
thing but with a reality that says they will never, EVER be done with this disease
unless they die of something else first. This disconnect is real. And it breaks my heart. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And so I am quiet. Unnaturally so. For 31 days. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ll call out the start of the month; I’ll call out October
13<sup>th</sup>, the single day “dedicated” to metastatic breast cancer. And
then I’ll just put my head down and try to support and amplify the good messaging, the
collaborative messaging that is out there. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Oh, I’ll still call people out on the misnomer of “prevention,”
but I’m pretty quiet overall. And, for those who know me, that silence is uncharacteristic.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By the time we get to Halloween, I’m emotionally spent
having vacillated between anxiety over the discord, guilt for not using my
outside voice and pure, unbridled anger at the corporations and institutions that
have profited off of a hideous disease under the guise of support. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So today is November. Today is a deep breath. Today is
self-absolution for my month of quiet. Today is vocal appreciation for everyone
who worked their asses off trying to move the needle last month. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today is
gratitude for everyone who checked on me and understands, without judgement, my
need to take a step back. Today is the day I apologize to those who don’t understand - I'm sorry you feel let down. Today is the day I have (another) ugly cry for all those
that we’ve lost and all those we will lose. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today is the day I pick myself up
from the puddle of grief, dry myself off, and move forward with the urgency and earnestness that
our community deserves every single day.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9CAD_wOzpxsqAEoqDn4HneXjFz4UfFje3Qu3CAieh2bee_s3rJxQizyyYIzNB-PeJzYt2bl5beC9mqddT6lXrwm8U3r8HOHmw-cLm5mg0L_9OxA-G6Jk_GtjHw4UjvwBFAvnVy-r5QHIq/s1600/Advocacy+Friends.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9CAD_wOzpxsqAEoqDn4HneXjFz4UfFje3Qu3CAieh2bee_s3rJxQizyyYIzNB-PeJzYt2bl5beC9mqddT6lXrwm8U3r8HOHmw-cLm5mg0L_9OxA-G6Jk_GtjHw4UjvwBFAvnVy-r5QHIq/s320/Advocacy+Friends.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just a few of those who have inspired, taught, motivated and advocated with me.<br />
Thank you. I love you.</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<br />coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com1tag:blogger.com,1999:blog-3075583501809046053.post-86590155906112704632019-07-01T19:44:00.000-07:002019-07-01T19:44:07.651-07:00Being Hit by a Car is Weird<br />
<br />
<div class="MsoNormal">
Being hit by a car is weird.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Surreal. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A day later, I remember everything, and the following nanoseconds
are likely permanently etched in my memory.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We were going west down Homestead. Straight. In our bike lane.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As the eastbound car began to turn into us, I was mostly incredulous.
“What’s he doing?” I said with urgency and some irritation.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Brandon, my tandem captain, husband of nearly 20 years and lifetime
cyclist, was already on it, waving his left hand and screaming “STOP. STOP. STOOOPPPP”
from the front of our tandem bicycle. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As the car kept coming, making his left hand turn directly
into us, it became clear that the impact was inevitable. On the back of a
tandem, I have no control. No brakes, no steering, no gears. Nothing. I am
fully dependent – a place I rarely find myself and even more rarely put myself. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As the driver kept turning his SUV toward us, everything slowed down. </div>
<div class="MsoNormal">
Oddly enough, even my
heart rate seemed to slow. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A calm came over me. I remember my brain saying, “Okay, Stace. You are about to
be hit by a car now,” in much the same way you would prepare a young child for
an immunization shot. Quiet. Calm. Simple. Matter of fact. “This is going to
happen now so, just know that.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My ears and brain registered the sound of the crash at
exactly the moment my face saw the black hood of the Lexus SUV. The little bits
of bird poop. My head was so close to the hood that I expected to hit it, to
feel the black shiny metal on my face – to land on it. I knew I would dent it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Instead my body turned midair and was facing the sky. “So
blue,” I thought. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In the midst of my slo-mo, a quick moving object caught my
attention – our tandem flying through the air and landing 27 feet away from the
point of impact. Everything felt like a slow motion video except the bike flying
through the air. I marveled at its speed.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then the landing. My landing. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Hard. No bounce. And no real skid. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was suspended in the air and then I was just down. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And I stayed down. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I panicked for a brief moment concerned that the car would
keep rolling and smash my head, then I heard Brandon before I saw him. He was yelling at the
driver, “STOP. STOPPPPP.” Evidently the driver continued to roll well after impact. </div>
<div class="MsoNormal">
And then my husband screamed, “Why
did you hit us? WHY DID YOU HIT US?” as he ran over to me.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
“I’m okay. It’s okay. I’m okay. We’re okay,” I said from my prone
position on the ground. Left side. Afraid to move. Thought about my legs, tried
to move them. “I can move them. I’m okay. It’s okay,” I said aloud. At that point I think
I was talking to myself.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I tried to roll further onto my left side and push myself
up. No Bueno.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“You’re okay, I’m okay. It’s okay,” these words were my
mantra as I focused on feeling out the parts of my body for injury. “Stay down.
Just take a minute,” I thought.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Ironically, as I was prone in the street, Brandon draped
over me, the Lexus driver says, “Are you okay?”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I stopped thinking, stopped mumbling and likely made a, “Are
you effing serious?” face.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Closed my eyes, released my breath, “Please call 911,” I
said.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The driver brought out his phone, as I focused on checking myself
for movement, but he took so long, Brandon ended up calling. <o:p></o:p>“It’s okay, I’m okay. It’s okay,” I continued to remind myself.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then there were the usual suspects: Nice neighbors, Police, Firetrucks, EMTs.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By the time the backboard came out I said, “I think I’m
okay. I just hurt.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Onto the backboard and into the ambulance I went anyway.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I could write an entire separate post about the ER
experience – not Kaiser’s best day – but this post is just about the randomness of
an unexpected trauma. That slo-mo thing. It was fascinating. In those nanoseconds I was able to say
and think in full sentences. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was fully engaged – living in that moment, if you
will.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our tandem is totaled but Brandon and I are fine. Both of us. He is bruised and sore but made of incredibly bombproof stock. My pelvic and lower spinal x-rays indicate nothing is fractured. Just some deep
bruising and soft tissue damage that will take some time to heal. For those
familiar with deep tissue bruising, we are now at the "galaxy stage" – blues and
purples on my hips, buttocks and back. In a few days the blues and purples will
be joined by yellows and greens. Then they will begin to “drip down my legs.” And,
in a few weeks, they will be mostly gone.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But that moment. That moment will never vanish. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Being hit by a car is weird. And I absolutely don’t recommend it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That said, if it had to happen, I’m grateful that we are both okay and that I have the memory and ability both physical and mental to share the story. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7NSGpWuHqVTHLhourxKz2j9famGtmHgl67qKHJiHFzvpztYjbtZU8QOalTnVuINyrmuz-nyNFlbUWqmFz6GfwVmGzyD9yVIvL7RfP-O76ZzQbmdQgRGs-Suzv36k2KZM7s36irmRnfdLR/s1600/galaxybig.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="661" data-original-width="1000" height="211" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7NSGpWuHqVTHLhourxKz2j9famGtmHgl67qKHJiHFzvpztYjbtZU8QOalTnVuINyrmuz-nyNFlbUWqmFz6GfwVmGzyD9yVIvL7RfP-O76ZzQbmdQgRGs-Suzv36k2KZM7s36irmRnfdLR/s320/galaxybig.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Add a bit more brightness and this would be the current color of my legs, butt and back. </td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<br />coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-80126536106601712032019-05-16T16:56:00.002-07:002019-05-16T17:04:34.393-07:00Navigating Hope Drive<br />
<div class="MsoNormal">
“In 1.6 miles, take a right on Hope Drive,” my navigation
system instructed.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“Eff. You. We’ve been on that road before, Google. We have
been on that #$&%^* road before,” I replied aloud.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmT4CY8LcyHXbjXLDaGX2ncPdL-vP1Zbdy70CbEFU2Tvaoc_V_LxHArPcC9aHsYcJ8ejhNpzPCrwmsak9DHJFh0USBC88OQQ6MitZ9HVp0n6xk9pRjTgT4ZOT0UpUDJ5Qqf6SsYQLcLqwo/s1600/hopeDrive.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1011" data-original-width="1600" height="202" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmT4CY8LcyHXbjXLDaGX2ncPdL-vP1Zbdy70CbEFU2Tvaoc_V_LxHArPcC9aHsYcJ8ejhNpzPCrwmsak9DHJFh0USBC88OQQ6MitZ9HVp0n6xk9pRjTgT4ZOT0UpUDJ5Qqf6SsYQLcLqwo/s320/hopeDrive.jpg" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Google maps was giving me literal directions but, at that
moment, the irony was overwhelming.<o:p></o:p></div>
<div class="MsoNormal">
I made a right onto Hope Drive, parked my car on the street
and walked another block to visit my dying friend.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Occasionally I will run across feel good stories about
cancer being a gift in someone’s life. But cancer is no gift. Cancer is a
thief. Cancer stole my breasts, my peace of mind, my sense of security that
leading a ‘healthy lifestyle’ would ensure a long life and cancer stole so much
of my children’s childhood innocence.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And cancer stealing my friends. One by one. Month by month
and sometimes week by week.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
More devastating is how it steals them piece by piece, bit
by bit.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our visit was brief. Her husband explained the night before
had been a rough one and her dosages of pain meds and sedatives had been upped.
She didn’t recognize me. I told her I loved her. I smiled at her. I asked if I could
give her a gentle hug and she agreed. <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
I distributed my hugs to the whole family and left with a
smile of my face and gratitude in my heart for the gift of being able to say
goodbye.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And I left absolutely devastated. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I sat in my car for 15 minutes bawling and swearing. H was dying.
She wouldn’t make it to Mother’s Day in a month. She wouldn’t even make it to
her son’s 9<sup>th</sup> birthday only 2 ½ weeks away.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
All the words that are socially unacceptable to say in public,
I yelled in my car. And I let the tears fall. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then, I made a very conscious decision to get back onto Hope
Drive and return to work. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Two days later, I visited again. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This time, H announced, “Stacey!” as I brought flowers from
my garden into her room.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Physically she remained ravaged, but the eye twinkle was back.
She asked about my children, fully engaged in the conversation, minutes later
her eyes were tired and her speech faded. She looked at me in earnest and said,
“The thing I don’t like is that you cannot go to the toilet by yourself. You
have to poop in a diaper.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“And, I cannot eat when I want to eat.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“What do you want to eat?” I asked.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After contemplating for so long that I was convinced she had
lost the thread of the conversation and the question, she responded
thoughtfully and quietly, “I want to cook.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A simple ask. A task, in fact, that some of us bristle at –
cooking. To many, the daily responsibility of meal making feels like a chore.
To a dying woman, cooking would feel like a gift. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
H can no longer hear well. She cannot process long
sentences. She cannot handle visitors and conversation for long periods of
time.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Her belly is bloated and her limbs are wasted. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Her face is skeletal and her eyes are jaundiced.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Cancer stole her mobility, her dignity and her future.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My friend is 38 and she will not make 39. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Cancer will steal my friend. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But I refuse to let cancer steal my hope. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After this second visit, I left H’s house with that
familiar dichotomy of emotions that I have only been able to describe as
“Grateful and Gutted” – grateful to have had a connection, gutted to bear
witness to another friend suffering the indignities and finality of terminal
cancer.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I wiped away the tears I’d refused to shed earlier, and
typically refuse to shed in public, found my car and, once again, made a
conscious effort to continue back on Hope Drive. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One week later, with hope in my heart, I was back on the literal
Hope Drive.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This time, I thought with some sense of warmth, it’s not a
trick. I’ve had multiple ‘final visits’ with a friend I didn’t think would live
to see the end of a week.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One more visit after one more visit. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Her son turned nine. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On the eve of Mother’s Day, my sense of urgency was
triggered. Whether it was time in the garden or the reality of the next day, I
texted her husband and asked if I could visit. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I walked in the room, I knew this was our final visit.
Gone was the twinkle. Gone was the recognition. Gone was my friend. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She wasn’t lucid but I spent time telling her that I loved
her. That I was proud of her. That I was sure her boys had inherited her strength
and perseverance. That she was a good mom and that she was a wonderful friend.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then I spent an hour downstairs visiting with her husband
and his friend. They shared amusing stories from their past. We laughed. H
would have been happy about this part. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
H died yesterday afternoon. While her body was ravaged, her
indomitable spirit managed to ensure she not only made her son’s 9<sup>th</sup>
birthday but she also lived through a final Mother’s Day. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today, as I drove to work, she was on my mind. I thought
about the sheer force of will it must have taken to make it through those key
days. And then I thought about hope. It must have taken a fair amount of hope
as well. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And, as pulled into the parking lot at work this morning, I was greeted
by a rainbow. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIzG8pisTOU-XFrtTDfnPzAwgM2g0VPKV_duYtceuQMRQC8hTyRZ1231xwRcUhF6MQlAlHIeB4CgMJAuLygHj1OnPUX8zOhWAEnlbopFO53ktFa3Nq-5QWPX_ikMqJo_pPVnw-gCa0qQAe/s1600/IMG_20190516_072822_281.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1059" data-original-width="1059" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIzG8pisTOU-XFrtTDfnPzAwgM2g0VPKV_duYtceuQMRQC8hTyRZ1231xwRcUhF6MQlAlHIeB4CgMJAuLygHj1OnPUX8zOhWAEnlbopFO53ktFa3Nq-5QWPX_ikMqJo_pPVnw-gCa0qQAe/s320/IMG_20190516_072822_281.jpg" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“Thank you, H.” I said aloud. “Thank you.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While I’m giving myself full permission pull off on the side
of any road for a good cry, a primal yell and perhaps some
inappropriate swearing, by and large I plan to continue to travel along Hope Drive. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com2tag:blogger.com,1999:blog-3075583501809046053.post-12777037486052546452019-02-15T08:56:00.000-08:002019-02-15T08:56:39.598-08:00In Between Exhales<br />
<br />
<div class="MsoNormal">
In times of uncertainty I hold my breath. Figuratively of
course, otherwise I would have passed out long ago. And for the past three days
I found myself in between exhales.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
I started figuratively holding my breath a few weeks ago
when my period came and went with minimal fanfare. Heavier than usual but still
in the relatively predictable range. And then the spotting started. Random.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Perhaps if this hadn’t been preceded by heavier and heavier
periods, I would have ignored it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Perhaps if I hadn’t spent four years, one month and nine
days taking Tamoxifen, I would have ignored it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Perhaps, and mostly likely, if I erased the last several
years from my knowledge base, I would have thought this in-between bleeding was
annoying at most. A precursor to an early menopause perhaps. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But I cannot erase the last six years. The last six years
was about cancer. My mom’s cancer. My own cancer. My friends’ cancers. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Living it and learning about it. Losing friends to it.
Trying to change the way we treat it and Learning about the drugs that keep
cancer away and simultaneously elevate one’s risk of endometrial cancer. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And so, denial by the wayside, I penned an electronic
missive to my doc with all the details.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I expected a response to the effect of, “Welcome to your
forties, this is totally normal.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Instead I received, “I recommend we do an endometrial
biopsy.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And the breath holding began in earnest.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaCey8K8e61g5KHnIrwiWF-S4j6qD0O2o76NTwqJT67XW6Db8ViYPhuFU3-ppFi2z_VFM1h2dIUfZHdpWGszM3qVX09sqTu2jYyzbxdy97aA7hisQp-qCj827ZwkQ6HUVPut6KUjMAozWP/s1600/20190215_083613.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1119" data-original-width="1600" height="223" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaCey8K8e61g5KHnIrwiWF-S4j6qD0O2o76NTwqJT67XW6Db8ViYPhuFU3-ppFi2z_VFM1h2dIUfZHdpWGszM3qVX09sqTu2jYyzbxdy97aA7hisQp-qCj827ZwkQ6HUVPut6KUjMAozWP/s320/20190215_083613.jpg" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thankfully when I finally decide to address an issue*, I do
it as swiftly as possible so the appointment was a mere 24 hours after my note
to my doc. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In the morning when my husband asked me what was on my
agenda, I came clean. In steps.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“I have a doctor’s appointment.”<o:p></o:p></div>
<div class="MsoNormal">
{pause}<o:p></o:p></div>
<div class="MsoNormal">
“My annual. Well, sort of my annual.”<o:p></o:p></div>
<div class="MsoNormal">
{pause}<o:p></o:p></div>
<div class="MsoNormal">
“Well an endometrial biopsy.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then the rest came tumbling out. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I hadn’t planned on hiding the appointment but I hadn’t
exactly planned on sharing it either. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Two years ago I had some random pain. My oncologist
recommended an ultrasound and we found some cysts. Complex cysts. We waited a
few months and scanned again. That waiting was one enormous breath holding
activity. And no fun for anyone. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Just last week my daughter brought up that period of time.
And the fact that we were all holding our breaths. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, two years later, when faced with a similar scenario, I
made an executive decision to keep my concerns and my neuroses to myself.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Unfortunately my children are old enough to be online so
putting out a blog post without sharing the reality first is a definite no-no. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is the no-no that I <b><i>would</i></b> have been committing had I posted
this days ago when I actually wrote it! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After a series of random texts to a dear friend, I picked up the phone and called her. We chatted for two hours about life and work and kids
and then, less than an hour before my appointment I was left to my own devices
sans distractions.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
I sent a quick email to my BAYS community with little detail
but with a humble request to direct some good juju my way if they could spare
the energy. By the time I checked into the appointment, my inbox was filled
with good momo, virtual embraces and love. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For those of you who are reading this post looking for the
411 on an endometrial biopsy, you will be disappointed. Procedures are
different for each person so I’ve no interest in either scaring someone or alternately
underselling the experience. Bottomline? I showed up. (I did <a href="https://coffeemommy-at-work.blogspot.com/2019/02/ruminations-sitting-alone-in-paper-sheet.html">rate my visit</a> tho...)<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And was able to exhale with, “At least I’m addressing it.
Whatever ‘it’ is.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My doc was clear that results could take ‘up to a week’ so I
was preparing myself and my shallow breathing for the next week until I get the
“everything looks normal but it’s great you came in” email.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
Essentially, I was “in between exhales.” A phrase that I feel sums up much of cancer survivorship.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And just about five minutes ago, I received notification of an
electronic message. The notification actually felt like the precursor to good news because I know he would have called
if something had been amiss.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b><i>“Your recent endometrial biopsy on 2/12/2019 did not reveal
any worrisome abnormality.”<o:p></o:p></i></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And, despite the fact weird things are going on, I’ve now had a full body
exhale. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Because, whatever it is, it’s not cancer. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p><br /></o:p></div>
<div class="MsoNormal">
<o:p><br /></o:p></div>
<div class="MsoNormal">
<o:p><br /></o:p></div>
<div class="MsoNormal">
<o:p><i>*And sometimes I don't decide to address and issue so quickly. Denial and avoidance are totally solid coping mechanisms in my opinion.</i></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<br />coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com2tag:blogger.com,1999:blog-3075583501809046053.post-31019436556023055392019-02-13T10:06:00.002-08:002019-02-13T10:26:16.310-08:00Ruminations: Sitting Alone in a Paper Sheet<br />
<br />
<div class="MsoNormal">
I found myself all alone in a paper sheet yesterday.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
Yep, no hospital gown, just a blue "paper" sheet in the
exam room.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p>Longer story that may come out in the end but right now,
while it’s fresh, I wanted to give some very specific feedback to health
systems in general based on my experience. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A few days ago, I sent my gynecologist a note via my health
portal. Something was amiss and I knew I should make an appointment. I didn’t want
my 15 minutes of appointment fame to be filled with initial explanations and level
two questions so I emailed the nitty gritty plus a few potentially relevant (or
potentially extraneous) details to my doc. And, despite the fact he has full
access to my medical record, I reminded him of my health history.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
His response was rapid, his recommendation was for a biopsy.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My fears aside, I was glad that we had established everything
we could via email, in advance of my appointment so the office/procedure time
could be as effective and efficient as possible.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I checked in 19 minutes prior to my scheduled appointment time,
filled out the requisite health history form (on paper) and was called back within
6 minutes. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The MA introduced herself, asked me about my day, and took
my vitals after confirming my name and birthdate. She showed me back to an exam
room (lucky number 16!) and asked me the reason for my visit. Part of me was glad
she was verifying but part of me wished she would have just confirmed the
reason for my visit based on what was in my record. I mentioned I hadn’t had
time to give a urine sample and she verbally directed me to the restroom. I asked
what the urine sample was for and she said, “pregnancy test.” I explained that I
was definitely NOT pregnant and she said, “It’s just protocol before a biopsy.” </div>
<div class="MsoNormal">
I peed in the cup and considered the fact that it cost me $10 (lab fee) to prove
that I was not pregnant and who knows what it cost the institution in
materials. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Two minutes later, she had given me the instructions to undress
from the waist down and given me a blue paper sheet to cover up with. On her
way out, she mentioned that Dr. C was, “running a bit late, so it might be a
few minutes.” The door closed behind her at 2:25pm. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I sat half naked in the absolutely soulless exam room for 21
minutes. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was nervous. When I’m nervous I get cold. I looked around
the office, but no blankets were readily available. I considered asking for a
blanket, but I was wearing a blue paper sheet. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I remained nervous. When I’m nervous I have to pee. I
considered going to the restroom about 30 feet away, but I was wearing a blue
paper sheet. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I could hear discussion in the next room (yep… totally!) and
the individual was being referred to oncology. My heart ached for her and my
nerves ramped up one more level. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When Dr. C came in, he greeted me warmly and we chatted for
a bit. He expressed his surprise at the concise set of symptoms and health
history I had sent him the day before, and I mentioned that I wanted our visit
to be as effective and efficient as possible. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dr. C thoroughly explained the endometrial biopsy procedure
to me, even though I’d had one before, and asked if I had any questions. He
called the MA back in the room and all the “fun” stuff began. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The procedure is what the procedure is, but I was appreciative
for his gentle demeanor and he took my lead by talking as a good distraction
from my discomfort. Just before we began, the MA suggested I use the heating
pack proactively during the procedure and helped situate me.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After the biopsy, I remained in the blue paper sheet while
Dr. C explained what we were looking for, and what my options were, depending
on what we found. He said, “Results will take a week. Well, I SAY a week, but
we will likely have them sooner. I just want to set expectations appropriately.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
All of my questions were answered, and I left the office. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While there exists another blog post talking about the emotional
and psychological aspects of everything involved in this visit and now waiting for
results, I actually thought I’d use this experience to give a bit of a report
card for my visit.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p><br /></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz3cTXnV7GqqFIcQUj3joMm-WVm-fABOrRYvxkp_XBPg795HrYqw69V4Fz-Ipw7Un4kKaiEf6fCRvztxswwzYIbdRcKtltOYSxyXFHV0HPI_S3ciNL55gOe-PFm8kGplHGz2Gy2kmWK3M8/s1600/feedback.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="450" data-original-width="900" height="160" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz3cTXnV7GqqFIcQUj3joMm-WVm-fABOrRYvxkp_XBPg795HrYqw69V4Fz-Ipw7Un4kKaiEf6fCRvztxswwzYIbdRcKtltOYSxyXFHV0HPI_S3ciNL55gOe-PFm8kGplHGz2Gy2kmWK3M8/s320/feedback.png" width="320" /></a></div>
<div class="MsoNormal">
<o:p><br /></o:p></div>
<div class="MsoNormal">
<o:p><br /></o:p></div>
<div class="MsoNormal">
<b>THE GOOD:<o:p></o:p></b></div>
<div class="MsoNormal">
</div>
<ul>
<li>Rapid and detailed response to my initial email helped ensure
the appointment was directed in the right way (biopsy as opposed to
conversation that necessitated an additional appointment). </li>
<li>I was taken to an exam room within 5 minutes of my appointment
time. Especially in cold and flu season, I appreciated being in my own space. </li>
<li>Disposition and demeanor of my gynecologist: eye contact, thorough
explanation of procedure; thoughtful responses to my questions</li>
<li>MAs suggestion to proactively use the heating pack and her
help with getting it situated made me feel cared for. </li>
</ul>
<o:p></o:p><br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>THE LESS GOOD:<o:p></o:p></b></div>
<div class="MsoNormal">
</div>
<ul>
<li>21 minutes of half-naked solitude</li>
<li>Financial and material waste of a pregnancy test</li>
<li>Ability to overhear parts of the conversation in the next
exam room</li>
<li>Paper health history forms (especially since I've been seen there for the last eight years)</li>
</ul>
<o:p></o:p><br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>WAYS TO IMPROVE:<o:p></o:p></b></div>
<div class="MsoNormal">
</div>
<ul>
<li>Warm blankets! For me, a warm blanket is a physical and emotional salve. </li>
<li>Provide more specific “running late” information</li>
<li>Decorations (or just some wall colors!) in the exam room</li>
<li>Music in the exam room (for my wait and for the procedure)</li>
<li>A more thoughtful protocol around pregnancy testing</li>
<li>Health history update form sent electronically prior to my appointment</li>
</ul>
<o:p></o:p><br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<br />coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-5362590596023958402018-05-31T11:53:00.000-07:002018-06-25T08:51:16.186-07:00Go Commando!<br />
<div class="MsoNormal">
I’m going commando today.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last week, on the five-year anniversary of my excisional
biopsy, I announced I’d lost my Big Girl Panties and was on the verge of an
ugly cry. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today marks the five-year cancerversary of my diagnosis.
I’ve already had one cry. It wasn’t ugly. It was actually kind of beautiful.
I’m happy, I’m sad. I’m hopeful, I’m anxious. I’m mostly all of these things on
a regular basis but <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So how do you recover after you announce to the world that you
lost your big girl panties?<o:p></o:p></div>
<div class="MsoNormal">
You have that big ugly cry.<o:p></o:p></div>
<div class="MsoNormal">
You compartmentalize the day to day from the big picture.<o:p></o:p></div>
<div class="MsoNormal">
You take some time to center yourself.<o:p></o:p></div>
<div class="MsoNormal">
You read the messages of support and love, many from people
you’ve never even met but who have experienced similar “lost panties” moments.<o:p></o:p></div>
<div class="MsoNormal">
And then you announce to the world that “Going Commando” is
the BEST. ADVICE. EVER.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Actually, I don’t know how YOU recover, but that’s how I’m
getting back in the game.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am now on my way to the world’s largest
oncology conference feeling a complete sense of gratitude, empowerment and
excitement. Basically I am feeling the EXACT opposite of how I felt just over a
week ago.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My actual “diagnosis cancerversary” involved some tears.
Some quiet acknowledgement. A LOT of outside walks. And, perhaps the most
healing, speaking with those who are smack dab in the middle of their own
$hitty cancer experience. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I mentioned before that the best advice I’d gotten when I
exposed all my vulnerabilities was to go without the constraint of feeling like
you had to have it all put together.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While that was certainly the most humorous and the phrase
I’ve repeated to myself multiple times a day for a giggle and a reminder, the
truly best advice was from a woman I’ve never met, “Treat yourself as you would
one of us.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And yep, I’m on the verge of tears as I type those words.
(It’s gonna be a long month evidently)<o:p></o:p></div>
<div class="MsoNormal">
The truth is I walk around explaining that we all just want
to be seen, heard and held. I just forget sometime that it’s okay to just let others hold you. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The best gift I received? Acceptance. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Most days?<br />
Onward and Upward. <o:p></o:p></div>
<div class="MsoNormal">
To Infinity and Beyond.<o:p></o:p></div>
<div class="MsoNormal">
<br />
But some days? <o:p></o:p><br />
Go Commando.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
Just Get To Tomorrow. <o:p></o:p></div>
<div class="MsoNormal">
<br />
And everyday “Treat yourself as you would one of us.”<o:p></o:p></div>
<br />
<br />coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com2tag:blogger.com,1999:blog-3075583501809046053.post-87588875622730612052018-05-23T09:13:00.000-07:002018-05-23T09:17:25.245-07:00Big Girl Panties and an Ugly Cry<br />
<div class="MsoNormal">
I lost my big girl panties and I’m on the verge of an ugly
cry.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For whatever reason, I am struggling and have been struggling
for the past few weeks. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT9gUZ4bQWtZo4jAtPWYsVnmhOp4uGezIfQ4NajfHetzrVEAVOoaAVhyphenhyphen8T2fRiBz1abKLb5u73QDggJZ8VA0V5BTajlEeQzJKeHo1nSOLQVNMHcTwwjHLCY-PTJlfebziePWvUsJhUar1f/s1600/20180407_123302.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT9gUZ4bQWtZo4jAtPWYsVnmhOp4uGezIfQ4NajfHetzrVEAVOoaAVhyphenhyphen8T2fRiBz1abKLb5u73QDggJZ8VA0V5BTajlEeQzJKeHo1nSOLQVNMHcTwwjHLCY-PTJlfebziePWvUsJhUar1f/s320/20180407_123302.jpg" width="240" /></a></div>
<div class="MsoNormal">
<br />
May is the start of my “cancerversary” season. <o:p></o:p></div>
<div class="MsoNormal">
<br />
In other words, the “For whatever reason” is really “Because
of effing cancer.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And I have a hard time saying this out loud. Because this season
marks five years and popular opinion is that this should be a veritable
celebration of achieving ‘good statistic status’. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But, let’s be honest, cancer is as much a mindf%#k as well
as a physiological disease. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today marks five years since my first excisional biopsy. A big
thing that became a small thing that is now part of a huge thing that I’m still
trying to integrate into my life. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today is one of the first of many babysteps that will land
me square in the FIVE-YEAR CANCER SURVIVOR club. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I thought I’d processed the handling of this milestone
already. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I thought I was ready to take my deep breath; acknowledge my
fear and pain; acknowledge the forever guilt in dragging my family into the
world of cancer; acknowledge my attempts of turning a crap diagnosis into a
meaningful path forward.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I really thought I was ready to nod my head at this series
of days and weeks and then proceed in a way that celebrates the beauty of each
day and also respects that every day in good health is a gift not afforded to
all people. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am so NOT ready for that today. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m pent up and nervous about my own future health. I’m
riddled with guilt over not being able to keep my neuroses to myself. I’m sick
in my gut watching the suffering and premature demise of others not so fortunate
as myself. And I’m angry with myself for not making the absolute most of every
day.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don’t need anyone to fix this for me. I don’t need anyone
to blow perfume up my arse. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
I think I just need to acknowledge that, despite my current
good health, remembering this date five years ago makes me sad and scared and angry. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Typing relaxes all my muscles and now that ugly cry is spilling out onto my keyboard. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I’ve wiped everything down I’ll start looking for those
big girl panties. </div>
<div class="MsoNormal">
Or, maybe, I just won’t wear any today. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-47580457646890885022018-05-07T13:56:00.001-07:002018-05-07T13:56:26.472-07:00A Little "Just to Be Sure" Scanxiety<br />
<br />
<div class="MsoNormal">
There have been so many times in the past few months that I’ve
composed blogs in my head and thought – I should really write that down. And each
one of those times I’ve <s>been too busy to write</s> prioritized other things ahead
of writing out whatever was in my head.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
Today I’ve not much of an excuse. I just returned from a
follow-up oncology visit and have just under two hours before I’m back at the
medical building for a breast ultrasound. We’re taking a better look at what is
likely a lymph node on the side of my right foob. It’s 99% a lymph node but
doesn’t have the “fleshy” feel of my other lymph nodes so Dr. L wants a better
look.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In a few hours we’ll have confirmed it’s just a healthy lymph
node and I’ll get on with the day-to-day but, at this very moment, I’m feeling
that familiar scanxiety. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Amusingly enough I was actually completely laissez-faire about
the whole affair during the discussion with Dr. L and the scheduling with the
imaging department. I was also fairly meh about things for about two hours
afterwards. But now, at home, waiting to return for my appointment and trying
to get some work done, I’m a little unnerved.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thankfully I now know better than to waste time and energy
rationalizing my emotions and I’ve learned the most valuable thing I can do for
myself is write it all out. This is reality. This is reality even after almost five
years with no evidence of disease. I’m not a worrier or a hypochondriac. I’m
just a woman whose body once betrayed her by growing a mass of rouge cells
that, if left unchecked, have the potential to bring down the house.</div>
<div class="MsoNormal">
I’m just a
woman who felt like she was following all the health rules and still found
herself at the short end of a cancer screening. </div>
<div class="MsoNormal">
I’m just a woman who is
grateful to be alive and grateful to have her health. </div>
<div class="MsoNormal">
I’m just a woman who is,
on a daily basis, cognizant that others my age and with my disease origin, are
being devastated physically, emotionally and financially. I’m just a woman who
says goodbye to friends at an inordinately rapid rate because of cancer.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I guess that’s what scanxiety is for me these days – going through
the “oh shit” and the “what if” all the way to 114 a day die from metastatic
breast cancer. Going all the way to Diane and Beth and Beth and Angela and Lori
and Janet and so many others. And, most recently April, Dianne and Vicki. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, when a routine oncology follow-up turns into a “let’s
just make SURE it’s nothing ultrasound appointment” there are a lot more things
for me to unpack. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thanks for letting me unpack them in front of you and thank
you for letting me react to my reality without judgment. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am just scanxious and that’s okay. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<br />coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-28131316741668689182018-02-08T05:49:00.000-08:002018-02-08T08:54:40.953-08:00Sometimes It’s Just Sadness<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My grandfather died yesterday morning. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Bumpy was 92. Almost 92 ½. He lived a “good life.” He was
loved by many. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He was loved by me.<o:p></o:p><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGqLwI84U7RpGWY24HjNVer72gPA8Axo9pdUNGCU1gqLp_VS7J9mZJclGJosXBDK0SmjCNxm0MaAXLBAZYNY_rGxl6gjPjh4NHYikP7CoHl259LRNSB3wycxuUzWXw7v1ou_xNPp7fbWV8/s1600/bumpy2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1166" data-original-width="1345" height="277" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGqLwI84U7RpGWY24HjNVer72gPA8Axo9pdUNGCU1gqLp_VS7J9mZJclGJosXBDK0SmjCNxm0MaAXLBAZYNY_rGxl6gjPjh4NHYikP7CoHl259LRNSB3wycxuUzWXw7v1ou_xNPp7fbWV8/s320/bumpy2.jpg" width="320" /></a></div>
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m used to raging against the premature death of friends from
the monster that is cancer but now I sit here simultaneously sad and yet
acutely aware of, and incredibly grateful for, the fact my grandfather had the
opportunity many are never afforded – time. </div>
<div class="MsoNormal">
I am grateful he had 92 years on
this planet. <o:p></o:p></div>
<div class="MsoNormal">
He had TIME to find a life partner. He had TIME to have children.
He had TIME to see his grandchildren grow and even TIME to see his great-grandchildren
grow. He had TIME for adventure. He had TIME for travel. He had TIME for
hobbies. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And, at the end, he felt he had too much time. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He was ready
to go. He had more time than Grammy. He had more time than his friends. He had
more time than either his body or his mind could manage. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
With advancing dementia and retreating physical ability, he
was frustrated and, at times, sad.<o:p></o:p></div>
<div class="MsoNormal">
Having visited with him in December, I am aware that he had absolutely
no desire to reach 93. <o:p></o:p></div>
<div class="MsoNormal">
In other words, I know that Bumpy lived a long life and died
a peaceful, natural death but I am still feeling a loss. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And a sadness. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This may seem like a no-brainer to many people, “Duh, your
grandfather just died. Of COURSE you feel sad.” But my brain is telling me I
need to stay in the “grateful for a long life space”. My brain is reminding me
that everything and everyone dies. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My brain is actually kicking me under the table
hissing, “You are being selfish; his quality of life was poor and he was
suffering.” Granted, the brain talk is having some effect since my sadness is
not the devastation I feel when a young mother dies of cancer or the devastation
I feel when cancer kills another friend before she can celebrate her 40<sup>th</sup>
birthday, but it remains a pervasive sadness nonetheless.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Normally, when a friend dies, I just mull through my emotions until they channel me toward action. I would process my
grief by typing, exercising, intellectualizing and allowing myself a maximum of
15 minutes of crying the shower. I would think about the support I need/want/deserve but I would refrain from reaching out to avoid burdening others with my sorrow until I was strong enough to hold theirs. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In this case, I began to belittle my own grief by reminding
myself “this isn’t about you, Stace” and reminding myself to be grateful for the nine
plus decades of time he had on this planet.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
And then I did something wildly different.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I actually told people that my grandfather died.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I told people that I was sad. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I reached out to a handful of people that I knew wouldn’t
freak out with niceties or try and blow perfume up my arse but instead would
offer just the head nod, the warm embrace, the validation and the grounding that I felt I needed. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
(My gratitude to you circle of peeps is immense. Truly.)<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This time I shared my grief by reaching out. Instead of worrying about the
burden my tears placed on other people, I allowed myself to be vulnerable, even
needy. This new approach meant hours of fielding phone calls and sharing
grief and gratitude with friends and family. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Sometime around noon I realized I was actually navigating my grief
rather than pretending it’s not on my roadmap. And I’m crowdsourcing my
support. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And yet. Something was stuck. Something felt amiss.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At the end of the afternoon, I was grateful but still sad.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And confused. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I felt I had already recognized my emotions but still
felt that stuck feeling. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I felt at a loss for what to do next.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then while sharing some of my fonder New England
memories with a sage co-worker, I felt that flood of emotion again, “I just
feel sad,” I said. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
His reply was soft
and his eyes were filled with compassion. “Well then just sit with that,” he
suggested. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I crooked my mouth (and probably my eyes and head) thinking, “Hey,
that’s what I say to other people. How are you using my own words on me? And, oh by the way, I HAVE been sitting with it. For like eight hours.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Instead I said, in all honesty, “But I’m used to this sadness
triggering something else. Triggering something for me to do. I’m not used to staying in the sadness emotion. I'm used to channeling
my sadness into action.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Instantly I recognized that the premature death of friends has
been a driving force in what I choose to do day-to-day with my advocacy work. Advocacy work wrecks me and fuels me - mostly at the same time. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But Bumpy’s death? The loss of my last living grandparent?
The loss of a man who regularly had a smile on his face, a witty comment on his
tongue and could make just about anything with a jigsaw, hammer and nails? The loss of a man who for many years, I thought was the tallest man on Earth? The loss of a man whose mantra (with a wife and four daughters) was “Yes Dear.”? The peaceful timely death of my grandfather who, by his
own admission, had enough TIME on the planet? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Bumpy’s death leaves an enormous gap,
feels like a tremendous loss and catalyzes an enormous wave of memories but
there no rage. No anger. No motivation. </div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
“There are no stages!” I thought to myself. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Typically I feel myself going through all the seven stages
of grief. Quite frankly, on an average day, I feel like I’m living in
all seven stages simultaneously. And then I move onto the action part of my personal grief roadmap.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
But for me, when a good man dies a good death at an advanced
age, there is really no room for shock or denial. When your 92 year old
grandfather has a DNR in place and his quality of life is being reduced by the
limitations of his body and dementia, there is simply no need for bargaining or anger when he peacefully takes his last breath. There is only room for fond memories, tremendous gratitude and sadness that seems to want to hang around for awhile.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
...</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My grandfather died yesterday morning. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Bumpy was 92. Almost 92 ½. He lived a “good life.” He was
loved by many. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He was loved by me.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am grateful. But I’m still sad.<br />
<br />
And now I’m gonna sit
with that for a bit.<o:p></o:p></div>
<br />
<br />
<div>
<br /></div>
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coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-89555056202803058922018-01-16T17:12:00.001-08:002018-01-16T17:12:13.722-08:00Full Circle in Five Years<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was gluing green ‘fish scales’ onto a long black felt singlet
when the phone rang on January 16, 2013.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
A cell phone call from my mom, at nearly 9pm was unlikely to
be good news but I made no real assumptions.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“I have breast cancer,” she said.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There were no auditory tears and there was no catch in her
voice. She was matter-of-fact in her sharing of this information. But it hit me
like a ton of bricks.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Within a week I would request a leave of absence from my job
in Silicon Valley. Over the next few weeks, I would investigate breast cancer
diagnoses, treatments and prognoses online. I would find #bcsm and #lcsm on
Twitter. I would learn about TDM staging and the difference between a
lumpectomy and a mastectomy. I would read about BRCA mutations and check out
books written by previvors. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Not even a month after my mom’s diagnosis, I would fly to
Texas to visit with her surgeon at the lumpectomy post-op appointment and learn
first hand about the devastation in hearing the words, “We didn’t get clean
margins.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then her chemo began, and I made another trip to Texas for
the obligatory shave the head event (and dye my hair with a pink streak).<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Mere weeks later I would receive my own cancer diagnosis.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The trajectory from that date five years ago to today has
been dizzying and surreal. I knew from the very first day after my own diagnosis
that something good had to come out of the shitstorm that is a mother-daughter
diagnosis. And yet I don’t really believe things “happen for a reason.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Instead I believe “things happening creates a reason.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I never returned to my job. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Instead I accidently created a new one.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I began consulting quite by accident when someone, after a
lengthy conversation regarding gaps in the healthcare system morphed into my
ideas around building scalable, repeatable models of patient engagement. And
then he asked me what my hourly rate was.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In the years since, I have become a vocal voice for health education,
true shared decision making and patient engagement across the cancer continuum.
I have elbowed my way into medical conferences to learn the latest in research,
treatments and outcomes. I’ve brought the reality of survivorship to those in
digital health and diagnostic testing. I’ve advocated for a transformation to a
proactive, wellness-based healthcare system from our reactive, illness-based
system. I have shared my experiences far and wide - sometimes as the token
patient on a stage filled with providers and sometimes as a voice representing
a whole community. I’ve spent time on Capitol Hill advocating for policies that
support the short and long term needs unique to people with a cancer diagnosis.
I’ve connected people to knowledge and people to organizations and amazing people
to amazing people. And, most importantly, I’ve met some of the most amazing,
brilliant and driven advocates that I’m now proud to call my friends.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And today, exactly five years to the day after I received that phone
call, I am joining a mission-based start-up company intent on changing the dynamic
for cancer patients and their community of caregivers via a combination of
empathy and expertise.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I suppose it’s not accurate to say that “I’ve come full
circle” since, in all honesty, the circle I’d become accustomed to legitimately
blew apart on that day five years ago.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But I do feel circle-like today. A single devastating phone
call was not the end but rather the beginning. Today I feel whole. I feel
complete. And, most of all, I feel deeply grateful.<o:p></o:p></div>
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coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-16761288481017323902017-10-30T09:19:00.001-07:002017-10-30T12:26:02.762-07:00Please Don’t Look Away for Goodbye<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While birth and death are two things that unite every single being on this planet, our society tends to celebrate one and fear the other regardless of its inevitability.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My friend Ellen died on October 4<sup>th</sup>. Metastatic ovarian cancer killed her. Unlike many of my other “cancer friends” she is someone I was friends with BEFORE cancer was diagnosed in either of us.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She called me when she found out in 2015.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We shared all the appropriate swear words. I answered as many of her questions as I could and connected her with individuals and organizations that could help us find answers for the rest. I gave her head covers and peppered her with details about the clinical trials she was interested in learning more about. I met her oncologist to help ask some of the questions she was concerned she wouldn’t remember and I sat with her during one particularly frustrating chemo treatment. But I didn’t even begin to imagine the most valuable gift I would give her, and she would give me, would be our final goodbye.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She rocked surgery and chemo but knew something was off about four months after her treatment ended. A scan six months later revealed a recurrence. And that recurrence was soon metastases. And then we began searching for trials in earnest.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We saw each other only occasionally but we texted each other often.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She was a force to be reckoned with on so many fronts and her approach to putting cancer in its place was no different.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As treatment after treatment failed, we started to talk about her hopes, her fears and how to get the people she loved most to address those with her. She didn’t want to die but she sure as heck had ideas about how she wanted to go.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After some particularly debilitating side effects, she looked forward to finding the ever elusive next potential treatment after October 1<sup>st</sup> when she had recovered from a cancer-related surgical procedure. But cancer is a wily beast and a number of complications put her in the hospital and on a ventilator just days before that appointment could happen.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While I expected she would not respond, I wanted her to know she was on my mind so I continued to text her in the ICU. And one day, she responded.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAy5_k19vuczd_AhuDoyHsXgkmSB2hibwAmi7GE4RMf09Dm7Z4tNRsFPHOQz-x3YDkv944frl2SxD6rA8xqZihLux0tp0f6uPIn6notAH9w9QL9GKF2Z6UG05Rxs3zgtOTZDnxgH54V-D4/s1600/ellen_1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1441" data-original-width="1077" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAy5_k19vuczd_AhuDoyHsXgkmSB2hibwAmi7GE4RMf09Dm7Z4tNRsFPHOQz-x3YDkv944frl2SxD6rA8xqZihLux0tp0f6uPIn6notAH9w9QL9GKF2Z6UG05Rxs3zgtOTZDnxgH54V-D4/s320/ellen_1.png" width="239" /></a></div>
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<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I cackled aloud receiving her text, imagining her slyly
sneaking her phone and trying to text around the ventilator I knew she was still
not happy about being attached to, and I responded that I'd love to see her if she had the energy. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
I am always cautious about inserting myself into situations
where I may be more hurtful than helpful. When someone’s time on planet is so
limited, I want to respect there is a priority order to energy and time spent
with others.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But, after a few days and a message from her husband that she was
moved off the ventilator and breathing on her own, I stormed the hospital. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I found her in the courtyard with family. She was unable to
speak (not aphasic, just throat irritation from being intubated) and visually aged.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But she was lucid. And she smiled. I’ll never know whether the
tears were happy or sad but I imagine they were a little bit of both – much as
my sobs were on the way home.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was able to tell her I loved her. I was able to tell her I
was proud of her. I was able to tell her a short story about how my children
were absolutely ready to look out for her son. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And I was able to tell her goodbye.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There were no illusions; that 90 minute visit would be the
last time I would see her. She was afraid I would leave and so I stayed until we had shared our words and hand signs and her eyes began to close. That is a powerful moment - the extent to which I am
unable to convey in words. Minutes of no words, just eye contact. Just facial expressions. Just being with someone and assuring them you remember all the things from all the conversations. Promising that you will continue to advocate on their behalf. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Just seeing, feeling, holding space for and with an amazing
energy and touching a soul for the final time.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I walked away with tears but so full of gratitude for the
opportunity to say ‘all the things’.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I texted her the next day, well aware she would likely never
see the text. <o:p></o:p></div>
<div class="MsoNormal">
But she did. And she sent me one in return. <o:p></o:p></div>
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<br />
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An advocate until the absolute end.*</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She died fewer than four hours later.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am grateful beyond words to have been there until the end. So
grateful for the chance to say goodbye.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So please, never turn away. Bear witness to life. While that shell of a
body may not be the body you remember, that person you love is inside. Be with
them until the end and that time will be a gift for you both. <o:p></o:p></div>
<div class="MsoNormal">
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<i>*I have convinced myself, and no one can convince me otherwise, her words are “You get it.” And with those words and that image, she’s reminding me to continue to speak the realities of ovarian cancer to catalyze more efforts around improved screening and treatments.</i></div>
<br />
<div class="MsoNormal">
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coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-35821181208874578682017-09-28T18:14:00.001-07:002017-09-28T18:17:24.694-07:00Even Superwoman Needs to Feel all the Feels<br />
<div class="MsoNormal">
Today actress Julia Louis-Dreyfus announced that she has
been diagnosed with breast cancer.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As a woman just over four years out from my own diagnosis
day, I am filled with only empathy, love and light for Ms. Louis-Dreyfus. I don’t
know her or her work (yes, I am one of perhaps four people on the planet that
has not seen an episode of Seinfeld) but I know she has just joined a community
that she never wanted to join and therefore only partially understands and may
not even know exists. She is likely in that whirlwind time where everyone is
trying to figure out up from down. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Cancer is sneaky bastard and all-consuming in that way. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I respect and applaud her openness with going public with
her diagnosis. With one tweet she educated thousands, if not more on a single
stark reality of breast cancer – it affects one in every eight women. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<blockquote class="twitter-tweet" data-lang="en">
<div dir="ltr" lang="en">
Just when you thought... <a href="https://t.co/SbtYChwiEj">pic.twitter.com/SbtYChwiEj</a></div>
—
Julia Louis-Dreyfus (@OfficialJLD) <a href="https://twitter.com/OfficialJLD/status/913452227104202752?ref_src=twsrc%5Etfw">September
28, 2017</a></blockquote>
<o:p></o:p></div>
<div class="MsoNormal">
<script async="" charset="utf-8" src="//platform.twitter.com/widgets.js"></script><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Sharing your story to educate others is a powerful too and being
vulnerable to the world with your private reality is well… a vulnerable kinda
place. I’ll leave my gratitude here for her and for all of those that lend
their voices in an attempt change the cancer narrative.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As one would expect, messages of hope & strength
permeated the tweets aimed at or in support of Ms. Louis-Dreyfus (what is WITH my formality today?!?! Julia, I’m calling her Julia) but one tweet caught me in particular. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<blockquote class="twitter-tweet" data-conversation="none" data-lang="en">
<div dir="ltr" lang="en">
She's going to be fine.
She's superwoman.</div>
— Molly Knight (@molly_knight)
<a href="https://twitter.com/molly_knight/status/913457165012131840?ref_src=twsrc%5Etfw">September
28, 2017</a></blockquote>
<o:p></o:p></div>
<div class="MsoNormal">
<script async="" charset="utf-8" src="//platform.twitter.com/widgets.js"></script><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And so my fingers typed what was in my heart and mind.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<blockquote class="twitter-tweet" data-lang="en">
<div dir="ltr" lang="en">
But there will be times, no doubt when she won't
FEEL like superwoman. It can be a lot of pressure. Please let her feel all the
feels & just be ready with the love, the light & the hugs. And
of course to join us all in a round of "Eff Cancer" ~someone
who knows... <a href="https://twitter.com/hashtag/bcsm?src=hash&ref_src=twsrc%5Etfw">#bcsm</a>
<a href="https://twitter.com/hashtag/bccww?src=hash&ref_src=twsrc%5Etfw">#bccww</a></div>
—
Stacey Tinianov (@coffeemommy) <a href="https://twitter.com/coffeemommy/status/913477607940689920?ref_src=twsrc%5Etfw">September
28, 2017</a></blockquote>
<o:p></o:p></div>
<div class="MsoNormal">
<script async="" charset="utf-8" src="//platform.twitter.com/widgets.js"></script></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Cancer sucks. We all have choices
on how we walk, run, dance, roll through the days of diagnostic testing to
determine and begin a treatment plan. There is no “right way” to do cancer. And
any way is hardwork. As someone who grabbed onto the cancer arse-kicker personality,
I also know that maintaining that front can be challenging. Dealing with your
own fear, managing the fear of others around you and trying desperately to ‘win’
is exhausting. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Balancing work, family, friends and personal sanity through life
in general is hard. Really hard. Balancing all that in addition to facing your
own mortality can, some days, feel like an exercise in existential Tiddlywinks.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Four years ago I fed off of positivity. And yet I had, and
still have, <i>those days.</i> On those days, especially after all of the well-meaning
but pressure-filled “You’ve got this girl” messages, it is hard to show and
share your fear. And some days those messages feel impossible to live up to. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
To put it bluntly, cancer is a mindf*!k. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Some days you feel like a cancer patient, other days you
feel like a rock star. Some days you do feel like you’ve ‘got this’ and other
days ‘this’ absolutely and unequivocally has you. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In my opinion, the absolute, without-a-doubt best ever support you can
provide anyone going through a serious illness is to allow them to feel all the
feels. Allow them to share their desperation with you. It can be hard to listen
to. It can be hard not to try and make <b><i>yourself</i></b> feel better by blowing verbal perfume
up their ass.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But you don’t have to have the words. You just have to have
the space. You, as a supporter, need to sit with your own uncomfortability
sometimes. Just listen. And then, when the time comes tell me what you know I
need to hear - that you heard me, that you listened.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Tell me you’re proud of me. Ask me what I hope for. Ask me
what I’m afraid of. Ask me what I think I need – and be fully prepared for me
to have no flipping idea. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Love, light and glittery unicorn flatulence is awesome. But
all of us need those souls in our lives that can suspend their own fears and
anxiety to just listen, to just sit, to just validate fears, anger, confusion
and fatigue. Can you be that person
to someone else?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
I sure hope so because even Superwomen wants <i>and needs</i> to be seen, heard and held.<o:p></o:p></div>
coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-12623280525077830202017-08-27T11:29:00.000-07:002017-08-27T12:30:51.766-07:00I Quit.<br />
<div class="MsoNormal">
For the past few months, my inside voice has been saying, “I
can’t even.” The decline and death of handfuls of friends to cancer and the sad
and infuriating realities of current events in our country and beyond have made
me want to (in the words of my children) “rage quit.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But I don’t quit things. </div>
<div class="MsoNormal">
Quitting is for, well, quitters. </div>
<div class="MsoNormal">
And I’m not a quitter. </div>
<div class="MsoNormal">
Quitting is bad. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Except when it’s the very best thing to do. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yesterday my husband and I took the tandem out for what was
to be another <i>stupid human trick. </i>Together and separately, we’ve been
engaging in athletic stupid human tricks for decades. Our recent flavor of fun
is the double century circuit on our tandem. We rode our first two years ago
and I became hooked. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The course of the Carmel Valley Double Century was intended
to leave out of Carmel, ride down the picturesque coast to Big Sur, cut in up
the famed Naciemento Road (which we’ve descended and ascended before in fine
yard sale style) and then ride back into Carmel via the windy and hot Central Valley.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last year the inaugural ride course was rerouted due to
active fires and our views of the ocean were severely limited. This year, due
to excessive and epic winter rainfall, a collection of mudslides and
ultimately the destruction of the bridge at Big Sur, required another reroute. Instead
of seeing the ocean, we were to leave Carmel Valley, ride through King City,
ride up to <a href="http://hesperiahall.org/">Hesperia Hall</a> and then turn around an come home. Not
picturesque. Not even pretty. But the organizers are such fabulously fun and
supportive people, we wanted to support the ride.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On the way south Friday evening, Brandon said, “We can do
whatever you want this weekend. We don’t have to do this ride.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Some people may have heard, “Hey hon, I know you’ve been
fighting a cold and have had an incredibly challenging few days with me
traveling and about to leave on another trip so, if you want to bag this and
have some fun instead of digging through a hot double, I’m totally game.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What I heard:<o:p></o:p></div>
<div class="MsoNormal">
</div>
<ul>
<li>“I know you have a cold, so you probably can’t hang.”</li>
<li>“It’s going to be really hot, so you probably can’t hang.”</li>
<li>“We haven’t spent enough time on the bike, so you probably
can’t hang.”</li>
</ul>
<o:p></o:p><br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
Evidently, I am a 44 year old woman with the enormous yet fragile
ego of a teenage boy. And, when I feel challenged, I do the obvious, I double
down. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We rolled out of the hotel at 4am, rode to the start off of
Carmel Valley road and began our journey. Beginning in the dark is always a
little disconcerting but the coolness in comparison to the 100+ degree
temperatures we were anticipating was welcome. Pedaling in the dark with a sky
full of stars and packs of coyotes was awesome, if slightly ominous at one
point. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP0k8yk6cJQ7I8Uq2KF2seG6zC0rH2uPTB_VAlkSQdXFQMJaPq6zbF4Clyg3P5u1JYKbI43scBdwIOrw317p7YUsqT_oOYvPIh9c5_fqGHjxMTctL6mvbr_ncR7HkCYPdUtN5lwtgosRQF/s1600/CVD_double+start+2017.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="512" data-original-width="512" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP0k8yk6cJQ7I8Uq2KF2seG6zC0rH2uPTB_VAlkSQdXFQMJaPq6zbF4Clyg3P5u1JYKbI43scBdwIOrw317p7YUsqT_oOYvPIh9c5_fqGHjxMTctL6mvbr_ncR7HkCYPdUtN5lwtgosRQF/s320/CVD_double+start+2017.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: 12.8px;">Rolling out at 4:10am - enjoying a chilly start</span></td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCRg78tCqqgbaHZC5glqjjzTiKCvU_LWk6UyuxjQI8Z-0FJCGvcvMrwJgm51quZs3g7miuIhsAGkbETP755A0BYTR3U7xJW8iqLHxpsQxPoVGAQ21KmkHh58nUn4SJDA0yicvUinHcWdPT/s1600/CVD_hill2017.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="384" data-original-width="512" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCRg78tCqqgbaHZC5glqjjzTiKCvU_LWk6UyuxjQI8Z-0FJCGvcvMrwJgm51quZs3g7miuIhsAGkbETP755A0BYTR3U7xJW8iqLHxpsQxPoVGAQ21KmkHh58nUn4SJDA0yicvUinHcWdPT/s320/CVD_hill2017.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">A new day has dawned!</span></td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our first fifty miles went off without a hitch, seventy was easy but I
was definitely suffering some anxiety around Brandon’s constant reminder regarding
temperatures exceeding 110 degrees and I had no positivity with which to combat
his concerns. I tossed a couple of “At least we’re together” comments out but
his response was, “We could have been together somewhere else.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
True.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Somewhere after King City we entered the warm, exposed area
that would have us climb to Hesperia Hall. Road temps rose quickly from a
comfortable 75 to a less comfortable 90. At the Lockwood stop at mile 90, I
opted to break into the ice socks for the big climb. At one point, his Garmin showed a 105
road temp and we took a shade break before we summited. Even with the break, we
made great time and pulled into lunch at Hesperia Hall before the food had
arrived. Our goal was to ‘cool down’ so we spent awhile sitting before
realizing that if the ambient temperature was 100 degrees, cooling off was
likely not going to happen.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaN6x2edqdVQhPNTHstz0edaLxQxLNLSa0pcrr-MvVhNHtMmqI79SGGhWDiz0iMUXjVmBF2fAcHxEBcN7YzEW-UoLqZxpHvq4H82d6x47VJgN5OuavRuHMBcoFwtJkfXuUWArjU8cC-bbs/s1600/CVD_ice.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="512" data-original-width="384" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaN6x2edqdVQhPNTHstz0edaLxQxLNLSa0pcrr-MvVhNHtMmqI79SGGhWDiz0iMUXjVmBF2fAcHxEBcN7YzEW-UoLqZxpHvq4H82d6x47VJgN5OuavRuHMBcoFwtJkfXuUWArjU8cC-bbs/s320/CVD_ice.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ice Socks!</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
So we headed back down the hill with fully loaded ice socks.
We’d stopped speaking with each other, just pedaling and going to our separate
mind spaces.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We pulled into the King City rest stop at mile 134. We’d
made it through the heat but neither one of us was having fun. The obvious
thing about the tandem: it takes two. Usually this works to our advantage. My
biggest struggle tends to be early in the ride (mile 60) when the 200 goal feels
so far away. Brandon is incredibly strong here both mentally and physically. He
wanes somewhere between 80 and 120 and I’m all too happy and capable of picking
up the “This is Fun and We Can Totally Do It” torch. At mile 180 I am all about
“getting off the effing bike” and he says amusing things like, “Just sit in
honey, I’ve got this.” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But on this day, at mile 134, no one was happy. And I
didn’t have the inner fortitude to do a damn thing about it. Brandon made noise
about how he wanted to throw in the towel at the first rest stop when he heard
the revised 118 degree forecast. And so I imagined that was it, we were giving
up. We sat for ½ hour but we got back on the bike because it’s rather challenging
to SAG out a tandem. No one was thinking straight and no one was happy so we
headed out pedaling together but feeling totally separate into the headwind. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At mile 140, we pulled off into a broccoli field for a
stretch and I said, “This sucks.” For hours it was apparent that Brandon was
not interested in being on the bike. On top of the regular, rolled down a hill
feeling I’d normally have at mile 140, I felt guilty for making him endure
something neither one of us was really into.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And so back to that car ride. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When Brandon said, “We can do whatever you want this
weekend. We don’t have to do this ride.”<o:p></o:p></div>
<div class="MsoNormal">
He MEANT, “I don’t really want to do this ride. Neither one
of us likes heat and the course doesn’t seem very pretty. Why don’t we ride
down the coast instead.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yep, married for almost 18 years and sometimes we still need
a translator because we don't always say what we mean.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When the tears came, they surprised me. This was not the
hardest thing that I’ve done by a long shot. Only after a few minutes did I
realize the source of my sadness. <a href="https://coffeemommy-at-work.blogspot.com/2015/08/dancing-thru-mountains.html">I said a couple of years ago I felt that together Brandon and I could do anything</a>. I said it in connection
with the tandem but meant it as an allegory for life. And now, this ride was an
‘anything’ and we were not doing it together. We were on the same bike but not
together. And it was apparent that headwinds, hill climbs and residual Central
Valley heat was not going to bring us together. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I know my role when he’s on the bike and I’m the SAG. I validate
his fears and miserableness, gauge whether or not permanent damage is possible,
and then talk his ass back on the bike. It’s different when you’re both on the
bike. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I didn’t desperately want to finish, I desperately wanted to
feel part of a team. Our team.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“Honey, we do doubles for fun. This isn’t fun,” he said. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And, just like that, we turned around, now with the wind at
our backs and headed back to the King City stop. A few miles later, before we
reached the stop, we found a SAG vehicle on the side of the road and asked if
his truck could cart our tandem. Ironically he wasn’t course support, but
supporting his wife who was finishing her 50<sup>th</sup> double. And, more
than ironically, he actually had a tandem rack.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
These things felt like the universe letting me know that the
decision to bail was the right decision.<o:p></o:p></div>
<div class="MsoNormal">
Jim West took us to mile 173 and dropped us off near the top
of the hill. We rode into the final rest stop, explained that we’d gotten a 30
mile lift and would ride the remaining 30 miles back to the start/finish.
Again, no looks of condemnation. No “oh I’m so sorry” from this husband wife
crew. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Apparently $hit happens and no one is judging except my own little
juvenille psyche.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We rode strong, in the top 20 all the way until we bailed.
Could we have finished? Um, yes. Of course we could have. But on a tandem it
takes two and riding across a finish line isn’t the same as finishing together.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
All in, we rode 175 miles yesterday and, if lives had depended
on it, or if it had been critically important to either one of us to finish, we
could have finished 203. The reality, in the dawn of a new day, is we didn’t
want to finish – we wanted to be done. And, most importantly, we weren’t riding
together. So we quit. And then we rode another 30 miles, waved to the finish
line and continued riding to the hotel. We racked the bike and headed to
dinner. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
I still believe together we can do anything but, for me,
this thought is idealistic beyond the bike. It encompasses the hard times of
life, not just the world of double centuries. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So we quit yesterday – but we quit
together.<o:p></o:p></div>
coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-4726349836251391652017-07-25T17:19:00.001-07:002017-07-25T17:22:47.966-07:00 Radiology & Patient-Centricity<br />
Patient-centricity in healthcare has become a buzz word. But
what does it really mean?<br />
<br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
Patients, caregivers, advocates, health practitioners and
providers alike seem to agree that the term references designing a system or
service around the needs of the patient. Specifics of what makes something “patient-centric”
may vary by service or system but all models and flavors of patient centricity
seem to favor stronger communication around patient goals and needs.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, what happens when patient and practitioner never meet?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At the end of May, I was prescribed a chest MRI to check the
status of my now 3-year old breast reconstruction silicone implants. Evidently
this is protocol (FDA recommendation) to check for silent rupture, so I made my
scan appointment, showed up on time and had my scan. My summer travel schedule
was intense and, because I had no immediate concerns about my implants, I
assumed results would flow in whenever they were available. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Four weeks later I was still waiting for results. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In my patient portal, I could see that my provider was on
vacation so an email seemed like wasted effort. I called the radiology office
(not on the campus of my other providers) and no one seemed to know who had my
results. I had no ability to contact my radiologist via my portal or even
determine who “my” radiologist was. Eight weeks later, I finally emailed my
plastic surgeon explaining that I was frustrated and that all I was looking for
was a YAY or NAY on my scan. He responded very apologetically with something to
the effect of “I thought you’d get an automated message through the system.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Fair enough, he thought I would be informed by someone else
or some other process. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So let’s just assume for a moment that had happened. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I would have received an email with something akin to “Congratulations,
your MRI was negative.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But what exactly DOES a “negative” result mean? In this
case, it meant no evidence of rupture. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But what if I had questions? <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As it so happened, I did have questions. “What is the status
of and size of the seroma in the pocket of my left implant?” I asked via email
to my plastic surgeon. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dr. H is a fabulous guy but, as he succinctly stated in his
response back to me, imaging is not his forte. “A seroma was not mentioned in
the report by the radiologist. Do you feel that the seroma is still there?”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
*sigh* <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Through this experience, I am realizing the numerous
additional challenges radiology has in designing with patient needs in mind and
wondering how we might improve the overall patient experience by making
stronger connections.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Please join <a href="https://twitter.com/coffeemommy">me</a> and fellow patient advocate <a href="https://twitter.com/findlungcancer">Andrea Borondy-Kitts</a> on Twitter to discuss “What does patient-centered
medicine in radiology mean to you?” during the <a href="http://www.tchat.io/rooms/jacr">#JACR tweetchat</a> Thursday, July 27<sup>th </sup>at 9amPT/12noonET.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO77U-H9UrGOjz_kvKkwM2T5r99yC8S2yKpj5sw_4GKHvSdsJWanYHO4lwy_7VgkMxDfKDG11NyYna75iIsN_MVyouGd62FONzOyp_SH8uIQO9fijO38FuxL4rvV06prYt-W0EfeFRhucX/s1600/JACR.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="253" data-original-width="504" height="160" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO77U-H9UrGOjz_kvKkwM2T5r99yC8S2yKpj5sw_4GKHvSdsJWanYHO4lwy_7VgkMxDfKDG11NyYna75iIsN_MVyouGd62FONzOyp_SH8uIQO9fijO38FuxL4rvV06prYt-W0EfeFRhucX/s320/JACR.jpg" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
For additional background on this topic, please read Andrea's June 2017 JACR blog post <a href="http://jacrblog.org/patient-engagement-one-radiologist-at-a-time">Patient Engagement One Radiologist at a Time</a>.</div>
coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-9968121431936897832017-07-17T18:53:00.001-07:002017-07-18T08:31:19.120-07:00“What Are You Really Doing?”<br />
<div class="MsoNormal">
After four years in the social media cancer community, I
finally felt the sting of an antagonistic, non-productive comment. But, as with
most things social, it certainly got me thinking. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last week, along with 40 other breast cancer advocates, I attended
a training in San Diego to learn about cell biology; mechanisms of metastases;
immunology and immunotherapy; systematic review and meta-analysis; policy advocacy
and much, much more. We now make up the ProjectLEAD Class of 2017 and will each
take our learnings back to our respective communities to further enhance and
accelerate our advocacy work. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I posted a photo of this incredible group, a friend, a
staunch advocate for metastatic research and an incredible human being asked me
publicly via Facebook comments to make sure the needs of the metastatic
community are added to the conversation. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I expected this request. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Metastatic breast cancer continues to kill ~110 women each
day and yet receives minimal funding from key sources. I assured her that, “My goal every single day
is to find a way to stop premature death from all cancers and to preserve the
highest quality of life along the way.” <o:p></o:p></div>
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What I did not expect was a comment to my reply from another
individual, “How! What are you really doing?” This and a couple other comments
(that have since been deleted by the commenter) had me feeling a bit defensive. <o:p></o:p></div>
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Okay, REALLY defensive.<o:p></o:p></div>
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But it did get me thinking. What in the heck DO I actually do?
<o:p></o:p></div>
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I realized the question was likely rhetorical but felt that
I should still be able to answer the nuts and bolts of my day to day.<o:p></o:p></div>
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So I did what I typically do in times of mental and
emotional turmoil, I brewed and extra pot of coffee, gave it some thought and
then went to the gym to shed the frustration and find my words. <o:p></o:p></div>
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Rather than list out the research projects I’m collaborating
with and how they play a role in either improving quality of life or improving
therapies; or share the roles I play in defining and evolving patient services;
or even explain the new realm of health policy advocacy I’ve been lending my
voice to; I thought I’d share the basics.<o:p></o:p></div>
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So THIS is what I have been doing for the past few years and
this is what I do EVERY. SINGLE. DAY.:<o:p></o:p></div>
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<b>I share. </b>I share my story to help demystify the realities of
receiving, understanding and dealing with a cancer diagnosis. Some shares are
more challenging that others but I share the clinical and emotional details of my
treatment and survivorship in the hopes that, as knowledge breeds understanding
and empathy, we can collectively transform the system to meet the unmet or
unspoken clinical and holistic needs of the over 15M cancer survivors in the
United States. And then I freely share my knowledge, my resources and my
connections. <o:p></o:p></div>
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<b>I listen.</b> I listen to other patients, caregivers, family
members, healthcare providers, healthcare innovators and health policy makers.
I listen to learn. I listen so others might feel seen, heard and held. I listen
to understand the care abouts of each audience so that I can help find our
common threads and stitch together bridges that can help us cross our divides. <o:p></o:p></div>
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<b>I speak up.</b> As I learned from an incredible advocate at the
2015 PCORI Annual Meeting, I am fortunate to have keys. I have a house key –
which means I have shelter. I have a car key – which means I have
transportation. I have an office key – which means I have gainful employment. I
speak up for myself and I speak up for those who have no keys. I mentioned
recently to a friend that there comes a time in everyone’s life where they need
to use their voice. I am simply grateful I’ve had so much support in finding
mine.<o:p></o:p></div>
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These three things, in every particular combination, define
my advocacy work, define my consulting work and define my person.<o:p></o:p></div>
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Four years ago on this very day, I ingested my first
Tamoxifen pill and felt I transitioned from cancer patient to cancer survivor.
Today my personal life and my advocacy life are very much intertwined. I am
gutted with every loss in our community and I am buoyed by every NED or stable
scan. I am skeptical regarding news of “breakthrough” science but am an eager collaborator
with those individuals and organizations taking a person-centric approach with
their research. I spend hours holding space for those who are scared, angry,
confused or relieved and then I spend hours on clinicaltrials.gov searching for
potential treatment options for those who have exhausted the options provided
by their physicians. I am grateful to have clarity of purpose (if a slightly
overbooked calendar) and an incredibly supportive, brilliant medical, research
and advocacy community to work with me. <o:p></o:p></div>
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That is what I am really doing.</div>
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And my goal <b>EVERY. SINGLE. DAY.</b> is to find a way to stop
premature death from all cancers and to preserve the highest quality of life
along the way.<o:p></o:p></div>
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coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0tag:blogger.com,1999:blog-3075583501809046053.post-42285513004603608792017-06-04T17:22:00.000-07:002017-06-04T17:22:20.354-07:00National Cancer Survivors Day 2017 - Celebrating the Mundane<br />
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Today is <a href="http://www.ncsd.org/">National Cancer Survivors Day</a>.<o:p></o:p></div>
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<br /></div>
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There are over <a href="https://cancercontrol.cancer.gov/ocs/statistics/statistics.html">15 million of us in the United States</a>
and well over twice that many in the world.<o:p></o:p></div>
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Events have taken place all over the country but, on this
particular national cancer survivors day, I am celebrating quietly. <o:p></o:p></div>
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There are no scenic hikes, epic bike rides or long runs in
my plans for today. There are no dinner celebrations and there will be no cake.
I am celebrating being alive with a decidedly mundane day. Coffee and a good
book, apricot picking, apricot dehydrating, refrigerator cleaning out and
crossword puzzles. The day is warm and gorgeous and I could be Out Living It
with other cancer survivors and supporters but not today. Not for me. Today I’m
sitting with my own no evidence of disease, relishing the fact that I am here
and alive enough and healthy enough to be unabashedly boring. <o:p></o:p></div>
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Facing my own mortality in such an abrupt manner at the age
of 40, triggered an almost manic response to life. Most days I feel compelled
to make the most out of every single moment. While living out loud has certain je
ne sais quoi, it can be, and has been, absolutely exhausting. Today I need a
break. And today I feel entitled to take that break. <o:p></o:p></div>
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No one in my family has recognized the day and, honestly,
that feels like somewhat of a relief. Four years ago, the diagnosis was so fresh
and the fear was so overwhelming that I couldn’t imagine a time of normalcy
ever settling on our home again. Basically,
the fact no one besides myself recognizes this day makes me feel finally out of
that needy inner circle and grateful that, in at least a few ways, my children
and my husband have moved on from cancer.<o:p></o:p></div>
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I say in a few ways because we will never outrun cancer, the
collateral damage it foisted on each one of us or the resentment of the fear it
still holds on our household.<o:p></o:p></div>
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Today may be boring but I am celebrating. I am celebrating
my life and the lives of others.<o:p></o:p></div>
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We have been called survivors, warriors, thrivors,
metavivors and many other intended-to-be-complementary monikers. <o:p></o:p></div>
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<br /></div>
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But we are just people. <o:p></o:p></div>
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And, like most people, we are brave when we need to be; afraid when fear dominates; angry when
cancer steals from us, our families and our friends; anxious when facing the
unknown; thrilled when we achieve milestones of NED and stability. We are all pushing
forward, many of us hand-in-hand. We are there to celebrate each others’ cancerversaries,
catch each other when we stumble, kvetch about the less-often discussed aspects
of cancer and absolutely there to comfort each other when the world comes
crashing down. <o:p></o:p></div>
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In Cancerville, so much needs to be addressed, so much needs
to be corrected. More communication, more collaboration, more research, more
support. But that is not what today is about.<br />
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Today is a celebration for over 15 million people, their
families and their friends. Today is a celebration of life with all its
imperfections. I am celebrating quietly (and deferentially with those unable to celebrate heavy on my mind) but I am celebrating.<o:p></o:p></div>
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A little bit of boring goes a long way, and enjoying my own
breath will amuse me for only so long.<br />
<br />
Tomorrow definitely requires a more
overt celebration... and perhaps some flourless chocolate cake. <o:p></o:p></div>
<br />
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coffeemommyhttp://www.blogger.com/profile/09544791942463716219noreply@blogger.com0