Friday, September 19, 2014

A Package of Self-Confidence Arrived in the Mail

A package of self-confidence arrived in today’s mail.

The medium sized, non-descript, padded envelope could have contained just about anything.

But it contained these…

One of my more difficult adjustments to reconstruction after mastectomy is my lack of nipples. There are nipple sparing mastectomy techniques but some are not eligible based on the location and nature of their breast cancer. Sure, nipples can be built, tattooed or otherwise added, but not until symmetry has been achieved.

I mentioned in an earlier post that Breast Reconstruction is not for Sissies.

Indeed. Breast reconstruction surgery is rarely one and done. Adjustments are to be expected, complications not as rare as you might think.

My reconstruction was supposed to be complete after going under the knife on March 24th.

Dr. H was removing my Temporary Expanders and replacing them with silicone gummi bear implants underneath the pectoral muscle.

This surgery was a mere 2 ½ months after the expanders were placed because my left expander sprung a leak.
In other words, the circumstances of my exchange surgery were not ideal.

As if to help my head resonate some universal balance, it turns out the results of my exchange surgery were not ideal either.

My left side developed a seroma immediately, which has left the implant pocket more spacious that desired. My right side developed capsular contracture, which has left the right implant pocket far less spacious than desired.

In clothing, there is no easy distinction, my breasts look normal, you cannot tell the difference. Yet, if you recall, in clothing, you couldn’t tell I was lopsided when I had a prosthetic breast on my left side either.

But I could tell. And that is why I made the decision I made to have reconstruction in the first place.

“Expectations are pre-meditated disappointments.”

I’m not sure where I first heard that saying but, in this case, the phrase resonates with me. I EXPECTED to be symmetrical. I EXPECTED to be finished with surgeries. My reality does not meet my expectations.

But I am not physically or emotionally ready for another surgery.

The scheduling department has kept me on the list and dutifully promises to call month after month to check my readiness. My body just wants to feel stronger. And my mind just wants to enjoy the heck out of my stronger body.

So. No surgery. Yet. 
Which means nipple reconstruction/tattoos/whatever I choose, also needs to wait.

And thus the mail order self-confidence in the form of temporary nipple tattoos.

I have pooh poohed the idea of temporary tattoos using cost, awkwardness and I-don’t-know-what-color-to-get as excuses but, after a weekend at the SF Zen Center with some incredible people, I finally made a commitment to try them out. And, in a fit of self-love when I ordered them last week, I ordered two variety packs so I can try out areola shades at my leisure.

In the privacy of my own home, I decided to put them on right away!

What I learned:
  • Measure, Measure, Measure: Eyeballing the nipple zone doesn’t lean toward symmetry, especially when the targets aren’t exactly symmetrical. Enough said.
  • What’s Beneath Really Does Matter: For years women have been purchasing lingerie to feel more confident. Turns out temporary nipple tattoos have the same effect.
  • Laughter is the Best Medicine: My breasts still don’t look even or close to normal. They don’t. The left still has a diagonal scar that runs from my lower sternum to under my armpit. The right side scar matches but is slightly smaller. Stepping back and noting that I am putting on temporary nipple tattoos to help make the above look normal made me laugh.
  • Happiness Can’t be Bought: But self-confidence can! I was happy with my health yesterday. This afternoon, I’m feeling a little more secure in my body. I think it has little to do with the actual result of the tattoos and everything to do with the fact that I took action. 

As I type this and prepare to push "PUBLISH", I think back to a phrase from MedX tweets: “The opposite of privacy is vulnerability.” At the time I responded that I agreed but it was the openness that led to building of a supportive and authentic community. And I still believe that.

I cannot be any more vulnerable. I am talking about my nipple tattoos publicly in a forum that doesn't ever go away. But I’m not talking to hear myself talk and I'm not talking to make anyone feel uncomfortable (unfortunately some, no doubt, will). I’m talking to all those women out there who are like me. And I'm talking to all those women who one day will be in a similar situation.  I am reminding them that they too have the power to help make themselves feel whole and self-confident again, even if they don’t look it.

Know you have options and please know you’re not alone.

Thursday, September 11, 2014

Tamoxifen Toe and other Wonky Side Effects

On Sunday evening, while playing a card game with my 11-year old on the floor of our family room, I noticed an odd bulge on the big toe nail of my right foot. In between playing my losing cards, I felt the bulge and then tried to scrape at it with my finger.


My toenail was covered in several layers of polish and, at first, I assumed that perhaps that was the culprit. When I moved my fingernail under the bulge, the toenail lifted up. Completely detached from the left side of my nailbed.

No trauma. No fungus. My toenail just popped off.

I’ve never just touched the bottom of my toenail and had it pop off. Ever.

I run. Sometimes I run long distances and I’ve definitely had toenails turn purple after marathons. I lost a fingernail once after slamming my own hand (accidentally!) in the front door. Again, this involved discoloration and what I would term as big arse trauma.

After announcing to the household that my toenail had just popped off the nailbed and simultaneously losing the card game, I turned to the only Dr. I can call on at 8:30pm on a Sunday: Dr. Google.

A search for “Detached Toenail Tamoxifen” brought me only more questions.

However, a search for “Tamoxifen Nail Issues” brought me here

The following treatments for breast cancer can cause nail changes:
·         chemotherapy:
·         tamoxifen, a hormonal therapy

Tamoxifen causes nail changes? Really?!? This was not in my prescription’s “Black Box Warning.” This was nowhere in the conversations I had with my oncologist when she placed me on the drug and then saw me every three months for check-ups.

Finding the above information brought a sigh of relief just as it brought a bit of despair.
  • Sigh of Relief: At least I knew what was going on.
  • Bit of Despair: Nine more years of Tamoxifen. Nine more years of the side effects I’ve already experienced and nine more years of discovering new ones. On my own.

One husband hug, a big "that sucks" and a tear and a half later, I’d resolved myself to “Well, this is the deal and at least it’s not cancer.” (Yes, everything now gets triaged in this way.)

I thanked Dr. Google and emailed my own new-to-me* oncologist with the latest goings on. Just under 24 hours later I received this response:

Dear Stacey, 

It was very nice meeting you the other day. Totally normal to feel the way you do about changing oncologist. 

Now, the nail problem you are having is not so common with Tamoxifen. I see it all the time with chemotherapy but not so with Tamoxifen. I think the same advise goes for chemotherapy or non-chemotherapy induced nail changes. 
Make sure you keep the cuticles moist and clean. Trim the nail short. Also, of note, tamoxifen in premenopausal may cause osteoporosis instead of helping it, so calcium/and vitamin D supplementation may help. 
I recommend 1500mg of calcium and 2000 units of vitamin D daily. 

Hope this helps. 

{My New Oncologist}

Hearing that my Tamoxifen Toe was “not so common” alarmed me a bit. I don’t necessarily want to be an outlier in the side effect space.

On Wednesday morning, I met a friend for coffee. She  was diagnosed with breast cancer just months before I was. I told her about my ‘new side effect’ and she gasped, “You are NOT serious?!?”

I laughed and said, “Yep. Totally.” I assumed her gasp was of concern and maybe a little grossed-out-ed-ness but when tears welled up in her eyes, I knew something else was afoot.

“I lost one three months ago. And I’m losing another,” she said. After much discussion she announced, “I just thought I was getting old.” This woman is in her 40s and it made me sad to think she had chalked it up to old age and not told anyone.

Wednesday evening I brought my Girl Scouts to a leader meeting to share their hard work over the previous year and met up with another mom who was diagnosed three and a half months after I was. Since she is on Tamoxifen, I told her about Tamoxifen Toe. Again, a gasp.

And again, a gasp because she has lost one too.

In the scheme of things, losing a toenail is party cake compared to losing a breast, losing some lymph nodes and especially to losing your peace of mind. But, in the scheme of things, knowing about possible side effects before they happen is pretty darn important.

I’m not angry with my oncologist. She didn’t put me off and I believe that she gave me sound advice when she heard what was going on. But I am frustrated about the lack of communication on the issue.

Patient advocacy is a two way street. As patients, as the ones experiencing the side effects (or what may be side effects!) we need to share. With our doctors, with our fellow patients, with our caregivers who advocate for us in so many ways.

Speaking of fellow advocates:  I posted last night the fact I had met a third person with Tamoxifen Toe. In my short 140 character tweet, I mentioned, “She lost one too.” Only after Liza (@itsthebunk) and Suzanne (@AskDrSuzanne) immediately responded did I realize that, if you hadn’t followed the saga since Sunday, I appeared to imply we were losing toes. Not so. Toenails. My sincere apologies for the drama and my undying gratitude for the support!**

So here it is: Have you lost a toenail while on Tamoxifen? PLEASE let me know in the comments section***. I’d like to bring this information to my oncologist and others – let’s give them at least some anecdotal data – so they can share. A longer term benefit would be figuring out WHY toenails fall off and what we can do to reduce our risk. A much longer term benefit would be to supply this information back to the field of research and see if we might be able to engineer some changes!

Anger drains my energy. There is absolutely no point in my being angry about the side effects but there is definitely a point in helping other patients know what may happen with their bodies BEFORE it happens.

* Dr. J, my oncologist left earlier this year to have her second child and move her practice closer to her home. I chose my new oncologist based on Dr. J’s recommendation and the recommendation of several women in my support group.
** Also HUGE thanks to @leahleahleah @luluchange14 @bccww who gave me tips and tricks which have also been passed along!
***Please let other Tamoxifen users know. And PLEASE let your doctors know.

Monday, September 8, 2014

Mini MedX: Tweetup meets Traditional MeetUp

Some of my biggest supporters and some of the most brilliant minds in healthcare leadership were in Palo Alto over the weekend participating in the MedicineX conference on Stanford campus. They are not physicians or researchers and they are not far flung family and friends. They are fellow empowered and activated patients who have collectively provided me and others with 24/7 access to emotional support, answers to a variety of questions no one seems to ever talk about and inspirational guidance by example.

MedX has for several years now, flipped the traditional healthcare conference model on its head by not only inviting patients to attend but making them the focus of the event. While I applied for ePatient status and scholarship through MedX, I was not accepted and, while I would have more than loved an opportunity to participate fully in the conference, I believe I was honestly more dismayed that I would miss an opportunity to meet a handful of these incredibly special individuals.

You see, I am a scant 20 miles away from the Stanford campus and I travel there frequently. In the middle of Silicon Valley, 20 miles should not be a barrier. Ever. I can walk that far. And, if I didn’t want to walk, I could take a train.

Fortunately (for me) I own a car.

So I seriously considered driving up to the Stanford campus, stalking out the conference and hoisting a sign that said, “Anyone have an extra ticket?”

Suffice it to say, I was not dissuaded from such activity. In fact, I was encouraged by the same group of brilliant rabble rousers I was so eager to meet in person.

Our family had a full calendar of weekend commitments but, determined to make something happen, I began the process of direct messaging those headed to Palo Alto. My plan was to head up Sunday afternoon (at the end of the conference) and see who I could see before they scattered.

Janet Freeman was first on my list. I have been desperate to meet @JFreemanDaily for awhile – if only to give her a long overdue hug. Through her tweets, a few emails exchanges and some blog entries, Janet has inspired me to look deeper and try even harder to bring empathy to the world. She has shared my blog, supported me in a Tweetstorm and basically epitomizes why I am so passionate about cross cancer support and de-stigmatization.

Unfortunately, after a few exchanges, it looked like Janet and I were destined to miss each other again (We had a failed face to face in Seattle earlier in the year). I wasn’t available on Friday or Saturday, she was unavailable on Sunday. We will both be in Denver late in the year and I was somewhat resigned to the fact that I would have to make do with that.

But it was a Friday afternoon Direct Message from @anetto that made everything possible. Annette had an extra band for the Saturday evening cocktail party and asked if I would be interested in attending. Interested absolutely. Logistically possible? Well… good thing I’m a fast driver.

Our family left the house at 7:15am on Saturday morning to head to Orangevale, California for a bar mitzvah. Three hundred and eight miles, and over 10 ½ hours, later I pulled into a PERMIT ONLY parking spot outside the Li Ka Shing Center for Learning and Knowledge on the Stanford University Campus. I did some mental math on the going rate for parking tickets these days and decided the price for my un-permitted parking would be absolutely worth it.

As I walked toward the balloons and streamers, I felt more and more like a party crasher. Perhaps the most striking reality was I knew very few real names and, unless the Twitter profile picture is a good representation, I had absolutely no idea what most of these individuals looked like. 

So, like any good party crasher, I decided to wing it!

Annette saw me before I saw her and we greeted each other with a hug. Then Janet appeared and I was able to share a hug with her as well. Almost instantly I felt I went from party-crasher to part of the party.

@coffeemommy @anetto @jfreemandaily
Photo by @abrewski3010

If you don’t have an online support system, it may be difficult to understand just how important these relationships are to me and how truly excited I was to meet these individuals in person.

@JBBC: I think I heard Marie Ennis-O’Connor before I saw her. She talks like she tweets: assertive, compassionate and lovely.  Marie lives in Ireland. Yet, as I explained to nearby MedXers, Marie was one who, “supported me when my expander exploded.” She not only personally buoyed me via Twitter and the blogosphere; she put the call out to other women who came out of the woodwork to share their experiences with me.

@itsthebunk: Liza Bernstein was next. I’ve seen Liza on a couple of #MedX hangouts so spotting her was easy. Liza was all the encouragement I needed to apply to the MedX ePatient program. She is the best mix of sass, sarcasm and sincerity and an individual I know I will spend more time with.  

Although I felt ironically comfortable, there were a few awkward meetings. Take my meeting Gonzalo Bacigalupe @bacigalupe for instance. He was absolutely recognizable to me yet I knew him only by his Twitter handle which is evidently his surname. Surprised as I was, I checked his badge to confirm my suspicions and my first words were “I didn’t even know you had a first name!”


I said that. 


(If he was offended, he didn’t show it and ended up taking a couple of photos for me. Unfortunately for me, I didn't get him on the other side of the camera!)

@coffeemommy @JBBC @anetto @womenofteal
Photo by @bacigalupe

After the first 10 minutes, I realized I couldn’t talk and take selfies all night so I chose the conversation path. And so began over an hour and a half of energetic, let's-DO-this back and forth!

In the MedX melee, I also briefly met @nickdawson @iam_Spartacus and @HurtBlogger. I met @givoly/@medivizor and a half dozen people I didn't even know via social media before I showed up on campus. Some knew me, some did not, some were no doubt overwhelmed and exhausted after a couple of days of conference. After the event, Annette and I had a spirited conversation with @justagoodlife and @abrewski3010 around the hotel pool. Again, more spirited conversation between people that don't just want to see the change, they want to BE the change.

I traveled home exhausted and grateful for the several hours I was surrounded by people who knew me and understood me before they ever saw my face. Many of these individuals know some of the most intimate details of my life and have been nothing but supportive. 

On Sunday morning, I participated in the #MedX Twitter feed while waiting for Janet to present via the live stream. In the actual conference room, there was evidently mention of the opposite of personal privacy being vulnerability related to the sharing of conditions. 

I thought about the comment and then I had an opinion: 

Then I spent a moment being grateful for that support. 

As a part-time, virtual participant I did not get the full MedX infusion.
But I got enough to make me smile on the inside and the outside and to inspire me to continue to push for and BE the change I want to see. 

There are people I am very sad to have missed in person but that only means one thing, I will be back there next year – officially or unofficially!