Health Literate and Patient-Empowered Youth: How do we support the next generation?

When I received the “Your Test Results are Now Available” email, my piqued curiosity soon turned to unbridled frustration. Complying with the email’s simple instructions, I clicked on the link to view my 13-year old daughter’s recent lab results but was met with the following message, “You do not have access to view this information.”

As is it turns out, while I am still able to schedule appointments and pay copays for my young teen, my daughter must actually provide her explicit permission for me to view her health records and test results.

In a crisis situation, this brick wall of confidentiality would have been mind-numbingly irritating. However, in this case, after an initial frustration subsided, the roadblock gave me pause.

Since her toddler years we’ve been discussing healthy habits.

Whether it was a visit for a well-child check-up or for an injury or illness, I have always encouraged both of my children to answer physicians’ questions directly (rather than my answering for them).  

And, at the end of every visit, I always prompt, “Do YOU have any more questions for the doctor?”

But I’d always heard those questions and I’d always heard those answers.

Now my daughter was of an age where she could and should be able to question medical professionals on her own. 

And I understand that, while my husband and I have raised our children with open communication on tough issues, there will no doubt be conversations she would rather have with her physician and not her mother. Realizing that she would one day need to navigate the healthcare system solo, I began to question whether or not I had raised her to be a health-literate and empowered patient?

As parents and as educators, we can obviously lead by example on the health responsibility front but some honest to goodness conversation never hurts.
Please join me on Twitter on December 18, 2014 at 9 a.m. PST for #KareoChat where we will discuss the nuances of how to raise our next generation to be knowledgeable and empowered healthcare consumers and generally health literate.

•  At what age/situation(s) should children be involved in conversations regarding their care? Checkups? Flu shots? Immunizations?
•  How can we involve children in decisions regarding their health and medical care at an age appropriate level?
• Does technology play a part in educating today’s youth to be empowered patients & healthcare consumers? How?
• What else can parents do to raise educated and empowered healthcare consumers and patients?

Gratitude is in the Perspective

Although counterintuitive to some, I find expressions of gratitude flow much more easily in the difficult times. When everything else is falling apart, the one or two positive outliers shine like beacons begging me to hold tight in gratitude. My mind gravitates toward focusing on and absorbing this recessive positivity and allows the ugly reality of whatever else is going on, to fade into the background. At a very basic level, I believe this is the epitome of mind over matter and, honestly, how I’ve gotten through many uncomfortable times.

The beacon in a long race is the image of the finish line and the sense of accomplishment I know I will have when I finish the run. The beacon at the bottom of a steep hill is the view at the top I am sure to relish.

If there is no available beacon, I will employ a challenge to act as a beacon. The challenge the day after a mastectomy was a 10K walk one week post-op. The challenge hatched for after my second mastectomy and bilateral reconstruction was a very slow half-marathon.

Indeed there are a variety of tactics I employ to focus my thoughts in times of crisis and most of them involve a mind over matter bent. But earlier this week, I participated in an exercise with my fellow cancer coaches that demonstrated just how uplifting focusing on the good can be even when the baseline is pretty groovy already.

I feel the need to share.

Tools:

• A timer
• A buddy

Time: less than 5 minutes

How to: You have exactly two minutes to, in stream of consciousness form, articulate what you are grateful for. Your buddy will stop you (mid-sentence even!) at the end of those two minutes. And you will share the word that best describes your state of emotional being at that time.

And then you switch.

I was fortunate to ‘play’ this game with three other phenomenal people and just listening to their gratitude was uplifting. What each of us takes for granted on a daily basis is somewhat mind-numbing. Hearing their gratitude was a gentle, non-accusatory reminder for me that simple the act of being able to enjoy a meal is a gift. 

A comfortable home. Financial stability. Truly these things are realities we often assume into the fabric of our day to day. I am not ungrateful for them but I am not regularly or overtly appreciative. 

Parents who are living and of sound mind. Good friends and the promise of camping for Thanksgiving. The steady rainfall. Again, my realities that, once spoken seemed to take on a bigger life and space of their own. 

The love and support of a spouse and the laughter and joy of healthy children is a total and utter bonus.

In the weeks before this exercise, my health was good and my personal and professional life enriching. Yet I had fallen somewhat into the doldrums and was seeking the new-new thing. A race? A vacation? A new adventure? 

In two minutes, without changing a thing, I found new perspective.

My word, at the end of the exercise, was Uplifted. 

If I had used several words one surely would have been “eye-opened” too.

I won’t stay here. I know I’ll get absorbed back into the go-go-go and do-do-do. But I have a tool to leverage any time I need a boost. And now you do too!

If you do try this activity with your friends, spouse, children, co-workers, please let me know how it works for you!

Moving from Breast Cancer Awareness to Action

October is Breast Cancer Awareness Month.

Many of us could not be more aware.

And what we need is research for better treatments, a cure and, someday soon, prevention. Usually this is followed by a request for gobs of money. But I'm not asking for money. I'm not asking you to purchase anything pink. And I am not asking you to bare your breasts or participate in any other pink-power-themed activities.

If you would like to help move an entire society from awareness to action without spending a dime, please consider taking a few minutes to sign up for the Army of Women and consider participating in a study. Most of the AoW studies are completely non-invasive and strive to gather information on both healthy women and women who have been diagnosed with breast cancer. We are looking for patterns, triggers, some way to get ahead of the disease.

Men, while you too are susceptible to breast cancer, the Army of Women is currently only taking females in her ranks at this time. Instead, please continue to support the females in your life and encourage them to join.

Together let's move from breast cancer awareness to breast cancer ACTION!

Thank you in advance.

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 24^th.

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.

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.

Nothing.

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:

o    Adriamycin (chemical name: doxorubicin)

o    daunorubicin (brand names: Cerubidine, DaunoXome)

o    Doxil (chemical name: doxorubicin)

o    Ixempra (chemical name: ixabepilone)

o    mitoxantrone (brand name: Novantrone)

o    Taxotere (chemical name: docetaxel)

·         tamoxifen, a hormonal therapy

[From http://www.breastcancer.org/treatment/side_effects/nail_changes]

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.

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!”

Yep. 

I said that. 

Brilliant. 

(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: 

This = Truth! But vulnerability allows for community support! MT @StanfordMedX Comment "Opposite of privacy is really vulnerability" #MedX
— Stacey Tinianov (@coffeemommy) September 7, 2014

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!

The “Magic” of Camp Kesem

Camp Kesem is a network of camps for children affected by a parent’s cancer.  

And, let’s be honest, every child is affected by a parent’s cancer.

The camp is 100% funded through donations, grants and all-scale fundraisers making it free of cost to participants. Kesem means ‘magic’ in Hebrew and, now that my children have attended and returned from camp, I can only nod wildly in agreement with the idea that this camp is indeed magical. Camp Kesem is not designed as a cancer camp. The camp is actually focused on typical summer camp adventure, fun and frolic yet brings together a unique peer group and provides the opportunity for deep connections. After five days, both my children returned healthy, happy and transformed in some very specific ways.

Prior to camp, I thought my children were all cancer-talked out.

We have talked openly with the children about cancer since a friend’s shocking Stage IV lung cancer diagnosis in May 2012. We continued to speak frankly after my mother was diagnosed with Stage IIB breast cancer in January 2013 and my uncle diagnosed with Stage IV lung cancer in April 2013.

When I was diagnosed with breast cancer in May 2013, there was no possibility that we would hide anything from the kids.

After my diagnosis and an honest conversation about fears, we made one family rule, Brandon and I would share everything with the kids but I needed to make sure I had come to terms with it first. We have operated pretty successfully in this manner for the past 15 months.

When I registered the kids for camp eight months ago, I was mentally preparing for yet another surgery. Most of our family dynamic still involved daily conversation about my breasts or my doctor appointments. Or Grammy’s chemo. Or Cheryl’s death. By the time this summer rolled around, I thought my children were all cancer-talked out but I still wanted them to experience the freedom to discuss and process cancer and the effects of the last year on their own terms, with support.

So off they went to Camp Kesem.

Regardless of how open and honest we are with our children - we aren’t kids. Children don’t have the same world perspective, the same fears or even the ability to process emotions based on decades of life experience. And the moment I was diagnosed, both children stepped into a role of trying to protect me from their own fears and feelings. I didn’t know if they’d share anything at camp, but I wanted them to have the option and the opportunity.

The intimate details of Camp Kesem SCU’s inaugural year is not my story to tell. I wasn’t there – THAT is part of the magic!

Yet I have listened intently to their retelling of “amazing” food, fencing adventures, card tricks, silly skits, uphill-both-ways-hiking, teeny rock walls and swimming pool extravaganzas. Evidently both children took leadership roles, learned new skills and made new friends. I was told that my son "Bacon" filed a formal petition to change the name of "Karl the Caterpillar" to Dave. And I was told my daughter "Jelly" formally requested that Administration “extend camp another four days.” They were obviously feeling comfortable and having fun! 

And I have also listened intently to the description of late night cabin chats that took decidedly different turns for both my son and my daughter. Our son came home and proceeded to regale us with new jokes and a handful of magic tricks learned from a fellow camper during the before bed conversations. Our daughter returned home with pages full of email addresses, journal notes and a visibly relaxed demeanor, which looks fabulous on her uber-mature personality.

Our kids were not steeped in cancer talk for five days; they were steeped in support. Over the past week, they each found the strength and courage to ask for what they needed and give back what they could.

They forged unique relationships with new friends and strengthened friendships that actually existed long before cancer or Camp Kesem came into their young lives.

Before camp, our children processed their anger toward cancer and their fear and frustration together. And yet they dealt with their feelings very differently. Our daughter put on a brave face; she soothed all of us and outwardly focused on the positive. Our son asked a lot of questions and processed on what felt like a very intellectual and very unemotional level.

Camp Kesem cabin chats became a catalyst for them to explore valid emotions they’d hidden from me and possibly themselves. And, for them, the Empowerment Ceremony became an opportunity for them to not only feel, but to share (and in some cases let go of) those emotions.

My daughter: “I was angry. No, I was pissed.”

My son: “I cried. Oh, I cried.”

In the few days since their return, they’ve mentioned going back next year more than a dozen times.

Last summer we were deep in CancerLand. This summer is so very different. Camp was fun, camp was restorative and camp was all about them.

When I arrived to pick them up, all of the kids and counselors were just getting into a circle. They all locked arms and sang “Stand By Me” while swaying together:

When the night has come
And the land is dark
And the moon is the only light we see
No I won't be afraid
No I won't be afraid
Just as long as you stand, stand by me

There are days I do not want to be known as a cancer ANYTHING: caregiver, patient or survivor. And then there are days that I need to talk ad nauseum with others who understand cancer’s realistic toll and lingering emotional and physical effects. Thankfully, I have a strong support system that enables both sides of that coin.

And now my children do too.

Thank you Camp Kesem SCU for this little bit of magic.

Cancer Puberty - Growing Back into Health

Today I realized that almost two months have passed without a blog post.

No wonder I feel a bit wonky.

Since adolescence, writing has always been a processing mechanism for me. A poem in a moment of passion; a never-to-be-sent letter in a moment of weakness; a diary entry documented in a moment of confusion; a smattering of song lyrics in a moment of overwhelming joy.

And blog post, after post, after post during cancer treatment.

Whatever the product, writing has always been the process that brings relief from, comfort to and validity for some of my larger-than-life emotions.

Walking today with Becky, a new friend who has just begun chemotherapy for breast cancer, I revealed my recent desire to not identify myself as a cancer patient. I had only just revealed the same sentiment to my husband so I was a bit shocked when the words tumbled out of my mouth this morning.

I struggled to clarify my sentiments this morning. 

I am happy to talk about my 'journey', I just don't want cancer to be one of the first three things people learn about me. I am delighted to share my story to support others but am tired of being surrounded by pink ribbons. I am immensely grateful for the unwavering support of family, friends and total strangers but I have started to bristle at any looks or words of sympathy. 

Since Day One of my original diagnosis, I have been open and honest about my decisions, fears and successes. I have shared surgical hiccups, emotional ebb tides and grandiose recovery plans. My openness educated others, demystified breast cancer and created a comfortable environment for my children, husband and friends to openly share their concerns and frustrations. My openness allowed me to shed light on my fears, making them a little less scary. And my openness unearthed a peer group that is absolutely unparalleled in understanding and emotional support.

I have no regrets.

Yet, especially in the last few months, part of me has wanted to forget and erase the cancer part of my life. I want to pretend it never happened. I don’t want to know some of the things I know and I don’t want my family and friends to have to know them too. I know they cannot forget. I know I cannot forget. 

Sometimes I just wish though. 

Nothing is wrong. Depending on your choice of description, you may describe my condition as in remission, cured* or no evidence of disease (NED). 

Nothing is wrong. My cancer was completely removed. I avoided chemotherapy. I’ve had successful reconstruction and, although I will require another surgery to correct a seroma and a slight contracture if I want to really be symmetrical, my prognosis is excellent.

Nothing is wrong. I left the high tech industry and have taken my skills into the realm of patient education and health advocacy. I have built relationships and expertise in the health care arena. I am delighted to be using my knowledge and my energies to help other newly diagnosed women process their emotions and navigate their treatment.

Nothing is wrong.

Yet something seems not quite right.

Perhaps I am still pissed off that I cannot do a push-up. I try every day and I am getting closer but almost four and a half months since my last surgery, I’m relegated to a handful of ‘girl pushups’ and a plank.

Glass half-full Stacey can focus on the improvement. Itchy, not-quite-centered Stacey is impatient.

Perhaps I'm a bit fatigued by individuals insisting one day soon I'll wake up and view cancer as a 'gift'. I have the utmost respect for positivity yet, despite their passion regarding the evolution of feelings, I do not and cannot conceive of considering cancer a gift. 

Perhaps I’m still a bit self-conscious about my new body that clothed looks just like the old body. More likely I’m actually irritated that I’m allowing body-image to play a role at all.

Becky asked me if perhaps this itchiness was a product of my ‘moving into survivorship’ and beyond the patient perspective.

Perhaps. There really isn’t a map. I don’t know where I am on the path of survivorship. Furthermore, I don’t think it’s going to be a straight line.

I have blamed much of the ‘off’ feelings on Tamoxifen but I have to say, the vague irritation, the misplaced frustration the nothing-is-wrong-but-something-is-not-quite-right emotion feels oddly, and yet remotely, familiar.

I feel pubescent.

Remember those awkward middle school moments when you’re trying to figure out which peer group you really align with? Remember feeling on-top-of-the-world one day and bitchy at the world the next? Remember writing out your emotional randomness in your journal and hoping someone would read it so they’d understand you better? (Oh, wait! Was that just me?!?)

I believe I’ve figured it out. 

Tamoxifen may be responsible for some of the mood fluctuations and memory issues, but the puberty analogy resonates. Queue the wildly random and mildly illogical thoughts and feelings - I am in the midst of survivorship puberty. I’m growing up and looking for my survivor peer group. I believe that means I’m growing out of cancer-ville and back into health.

Any others out there in the midst of 'survivorship puberty'? 

Anyone grown-up survivors have tips, tricks or suggestions? 

* Cured is actually a misnomer on several different levels but I’ll save that argument for another day.

Remembering a Long, Beautifully Imperfect Life

Nine months shy of 90 years old, my paternal grandmother died this afternoon.

In a seven month period marked by cancer death after cancer death, her death marks the only one that ‘makes sense’ to me.

In fact, of the almost two handfuls of people we have said goodbye to in the recent past, she is the only one who, in my opinion, really died. The rest were killed. Mostly by cancer.

My grandmother had 10 children. She was raised in a big Italian Catholic family and she and my grandfather created their own big Italian Catholic family. She and my grandfather (who died just over 20 years ago) were not perfect parents but they did the best they could to feed, clothe and educate all ten. Every one of her children has gone on to create their own familial units and she has quite the gaggle of grandchildren and great grandchildren.

My brother and I were the most remote geographically so my interactions with her were mostly limited to summer vacations and a few trips I took as a young adult. And letters. We wrote real, live, paper letters to one another. When we did gather together, it was usually for a wedding. As the oldest child of the oldest child, I attended many of them and have fond memories of ‘boogieing’ with my grandmother on the dance floor until the reception closed down.

She was a fabulous dancer.

She was also a beautician. She had her own salon in the basement of her Ohio home. The cousins and I would play in the swivel chairs and old school hair drying chairs. Sometimes she would paint our nails. Once she gave my poker straight hair a perm. I bore a shocking resemblance to a brunette poodle for the next six months.

She was a keeper of memories.

Lots of things found their way into cigar boxes and, as I reached adolescence, my grandmother would take me into her bedroom and show me old photos, the ones that meant the most to her. She would tell me stories of those long gone but not forgotten. She never let the dead be forgotten. At the time, I didn’t realize how important it was to keep those memories alive. I was a bit concerned by what I felt was a macabre focus on the dead. Now I understand as I strive to do the same with those who have so recently gone. The memories keep them close. Sharing those memories feels good.

The last time I saw my grandmother was nearly 10 years ago at a family reunion. She met and held my children and, for the first time, I could imagine how incredibly difficult it must have been for her to try and raise ten children while my grandfather worked two and sometimes three jobs to put food on the table. I felt an empathy for her I’d never felt before and a strong desire to learn from her mistakes. And her successes.

And then dementia began. (While my memory is sometimes spotty, the dementia was hers, not mine.)

Alzheimer’s took much of my grandmother’s vim and vigor nearly a decade ago, and so, in the scheme of things, I felt as if I had already said my goodbyes. She was no longer the vibrant woman I remembered as a young child. She no longer remembered me although my father swears she had moments of clarity for her ‘favorite grandchild’. I’ll take that. I hope that when she remembered, she thought of our long walks across the train tracks. I hope she knew that she was the only adult I would hold hands with long after I’d deemed myself ‘too big to hold hands’. I hope she knew that I learned things from her and that I have fond memories of our time together.

One week ago, I was told she was put under hospice care. On any other day, this may have upset me but just one day prior, I was told a young friend of my daughter had been killed in an auto accident. Killed. Taken away too early. Just like cancer. Another senseless death to explain to my children. Another death that made me angry and sad and scared.

So while today, and for the coming weeks, my family mourns the death of a woman who is directly responsible for so many of us being on this planet, I feel very much at peace. My grandmother lived her life. A full life. A beautifully imperfect life. She touched us all and there was goodness there. We shared dances and butterfly jewelry and photos of long gone, but always remembered, loved ones.

Tonight, I will dig up my own pictures of the past and honor my grandmother as she honored those that went before her. And, after a few tears, I choose to share the good memories with my children and hope that I am so lucky as to live a long, beautifully imperfect life.

Family Reunion 2004

An e-Ticket to my Happy Place

Evidently my happy place is an almost ripe blackberry.

In the center of my upper chest, just beneath my collarbone. When I breathe in, the imaginary fruit expands giving off the aroma of freesia-roses.  And, if I were to taste this internal creation, I would be rewarded with the flavor of warm vanilla.

This is not a dream, this is the mental manifestation and metaphor for the well-being space I am in right now.

I have just finished a one-hour cancer coaching session with Shariann Tom of The Cancer Journey.

After my cancerversary experiences in the previous week, I found myself in a brilliant space on a scale of Physical, Emotional, Spiritual, Hope and Trust and somewhat reluctant to engage in a coaching session on such a glorious day. After all, coaching is supposed to elicit improvement and I was sure there was no improving on this day.

After ten minutes of easy phone conversation around what external and internal events put me in such a fantastic space, I revealed that my only immediate concern was how to maintain and/or reclaim this space as the ‘wholeness’ started to ebb.

And thus began the great blackberry adventure.

Shariann asked me to envision the space where the strong emotions I was experiencing were kept.

I immediately sensed this wholeness was carried in my chest.

Shariann then asked me to envision the shape of this wholeness.

Perhaps because I was in my backyard at the time, and picking blackberries just prior to the exercise, the first shape that popped into my head was that of an enormous, pulsating blackberry. With my eyes closed, the image was vivid. A giant blackberry centered in my chest, just below the collarbone and expanding and contracting with every inhale and exhale. The colors of the blackberry varied just as a not-quite-ripe real berry might, and to me, signified the ripeness of my thoughts and emotions.

After spending a few minutes with this image, I was asked to attribute other qualities including taste, smell and sound to the wholeness.

For long moments at a time, I was in a state of just being. Just feeling.

If we’ve ever met formally, you know that I am always more of a ‘human doing’ than a ‘human being’. Spending even just a few minutes basking in an ethereal flow tends to make me anxious to get up and ‘be productive’. 

But not this time.

With images of the blackberry in my chest, I was able to lean into the moment. I was able to let go. I was able to relax.

Following the exercise, I realized I was even more relaxed and emotionally comfortable than I had been before. I was also relieved. Relieved that, as this feeling of centeredness begins to erode with exposure to daily life, I have a multi-point and multi-sensory method to reclaim it.

For every physical impact cancer has on an individual, there is at least one complementary emotional impact. In my experience, doctors, nurses and surgeons focus primarily on overcoming the physical obstacles and healing the physical wounds. Their goals are to overcome a crisis situation and put patients back on the path of life. In the cancer world, NED is victory.

Yet, in fact, anecdotal conversation has demonstrated mental and emotional health can often plummet when treatment is complete, even if the patient has no evidence of disease. With no more appointments to attend and no more ‘battle’ for which to rally, survivors are left to move on. During that quiet period, we are blindsided with the ‘what-ifs’, the tangible losses, and the insidious fear of recurrence and/or metastasis.

We experience extreme gratitude towards those who diagnosed, treated, rebuilt or otherwise supported us. And we also experience extreme guilt for being anything less than manically thrilled at the prospect of another day of life when others don’t always get that opportunity.

Whether you find continuity of support through formal cancer coaching, a local support group, an online support community, or simply through the network of family and friends who have been there, mental and emotional release and fortification are critical.

Personally, as a more-is-often-more personality, I consistently access multiple modalities for support. While this suits me well, learning a method for achieving mental wholeness on my own is both soothing and exhilarating.

An hour of cancer coaching doesn't replace the strong network of friends, family and survivors I have around me but one hour of cancer coaching certainly earned me a perpetually valid e-ticket to my very own happy place.

Adversity Happens - Happy Cancerversary

On the one-year anniversary of my breast cancer diagnosis I spent the weekend with my husband in the Mojave Desert.

The trip was not a celebration of the road traveled nor was it a luxury spa weekend. My husband was a participant in the Trona 308, a 308-mile bike race from Santa Clarita, CA to Trona, CA and back.

For twenty years, my husband and I have been supporting each other in events that are best classified as ‘stupid human tricks’ but this was the first ever ultra, ultra stupid event we’d ever attempted.

The plan was for him to ride and for me to crew (drive the car the entirety of the course, leapfrogging him to provide water, ice, food, common sense advice in the wee hours of the morning and hugs).

The drive down to southern California on May 30^th was filled with conversation not strictly about the ride itself but about the day. My cancerversary. Brandon had offered more than once to skip the race and commemorate the day in whatever fashion felt most restorative to me.  At my six-month anniversary we hosted a Gratitude Party  for friends and family who’d lent so much support in those early weeks and months.

A party didn’t feel right this time. Honestly, a party felt like tempting fate.

I wasn’t in a celebratory mood. I was pensive.

Dates have always been important to me. I celebrate half birthdays of those I love; I remember and commemorate dates of first times and last experiences and I often inject and interpret meaning where other people find none. The months of May & June were full of anniversary minefields but the big ones were my first mammogram and ten days later when I was given my biopsy results.

Talking helped. Talking through the meaning I’d placed on those dates and talking through the memories that were invoked reminded me that I have the power to give meaning to anything. I could view May 30^th as the day the world came crashing down, or conversely, I could choose remember it as the day I started my own version of an ultra-endurance event. I could also choose to celebrate that one year later, I am cancer free and physically and mentally strong.

The more we talked I realized that, one year later, I feel a bit as I imagine Dorothy may have felt wandering along the yellow brick road.

Remember the super scary forest with the mean apple trees? That was the cancer part of last year. After four surgeries and four recoveries, I’m still on that road but I’ve moved beyond the mean trees.  I can see a bit of the larger forest. Taken to injecting meaning and finding parallels where others see nothing, I then equated my sequential recovery fatigues to the sleepy field of poppies. Sleep, sleep, sleep.

Coming out of the scary forest, waking from the poppy field fugue, I am glimpsing that the bigger picture is that my life is so much bigger, broader and funner (yep, I said funner!) than just cancer and survivorship.

By the time we arrived in Santa Clarita to check in as Sanguine Octopus*, I felt celebratory.

Adversity happens. It’s what you do in the face of it and the aftermath that creates your life.

At check in, I re-met George “Red-Eyed Vireo” Vargas. George and I met a year and a half ago at the Death Valley Century ride. He had had a hellacious year and I was setting out to complete my first century ride in nearly 15 years. As it so happened, I had read George’s blog the day before we headed to Death Valley for the ride. I read about his difficult year and I was suddenly inspired by all that he had, and was continuing to, overcome. Meeting him at the finish, I told him how his posts had given me the confidence boost I needed to just put myself out there after so many years. And then we lost touch.

To see him sitting there was again, an inspiration on my cancerversary. A reminder of all that we are capable of completing. I reintroduced myself and he asked where I’d been, since obviously I’d NOT been on the ultra-cycling scene. I gave him the short version of the last year, leaving out the part where my mother was diagnosed but including mine. In the time since we last spoke, George had started a cycling team and ironically, REV Endurance Cycling’s official charity is the Breast Cancer Research Fund. Also a bit ironically, George had broken his hip in January and was, once again overcoming adversity to ride the Trona as part of a 2-person team. He said it with the same nonchalance one would discuss the weather yet he was sitting there fewer than five months later as a competitor.

Indeed another slap-on-the-back-and-kick-in-the-shins reminder that adversity happens and that it’s what you do in the face of it and the aftermath that creates your life.

The next morning, as if to prove the point just one more time, the universe let the Trona 308 unfold.

This is no ordinary 300+ mile event. The course winds from Santa Clarita, through the Angeles Forest and then pushes the envelope of heat and wind through the Mojave Desert. Arriving 154 miles later at Trona in the Searles Valley, we’d managed to overcome quite a few obstacles but turning around, into the wind, to ride back is when adversity really amped up.

If you want to read a play by play of the ride, check out any of the Adventure Corps #trona308 riders, they all have stories to tell, but a few of the pics below give you a bit of an idea of the heat, wind and mental obstacles these riders needed to move through.

At eleven in the evening, Mark (Viszla) came into stop 6. Mark was a randonneur (unsupported rider) and I had offered him and other rando riders unsolicited support on many occasions throughout the day. While a few took me up on water and food, Viszla always smiled and said he was fine. In the final hours of the evening, with over 70 miles left to go, Vizsla looked markedly less than fine. He looked fried. He looked bummed. He had taken a wrong turn, gone several miles out of his way and was just damn tired. While I waited for my husband to arrive at the check stop, we chatted.

We chatted about this event being his first ever event. We chatted about his near death experience and how he overcame with not only a very evident personal chutzpah but also the support of loving friends. Matt’s story is not mine to tell but it is a beautiful, incredible, amazing story. I cannot tell you that sitting down and having him relive a difficult piece of his past gave him the energy to refocus and keep going (no, that was absolutely the CocaCola I gave him – ask him, he’ll tell you!) but it sure as hell inspired me.

We all left California City and dove into the wind tunnel. Eighteen miles of howling wind on Oak Creek Road took hours. Brandon was riding. I was driving, sitting, thinking. Then he’d stop. I’d feed him, hug him and send him on his way. Then I’d return to sitting and thinking.

For hours after my chat with Vizsla, during the times I sat lonely in the post-midnight desolation, I continued to look up in wonder at the vastness of the very small part of the universe I can see. I thought of all those who have come before me and will come after me. I thought of friends that have died and friends who have thus far eluded death. I thought of the scary moments of the last year and then put them into perspective with the triumphs.

At 4:00am, I met Brandon one final time at the corner of Johnson and Elizabeth Lake roads. At this point, he was riding by rote and in a zone of fatigue that left him pretty much unable to remember directions. I had met him at every turn for the last 100 miles and this was essentially the final one.

With 20 miles left, he assured me he was ‘good to go’ and asked me to please go back to the start/finish to wait. After a quick mental calculation about his ability to finish the ride, and my ability to let him ride the rest unsupported, we made a deal. I would wait fifteen minutes after he set out, leapfrog him one more time and, if all was good, wait for him at the finish line.

Just over an hour later, as the sky began to brighten in predawn Santa Clarita, I saw his headlight coming down the main street.

He pulled into the finish at 5:15am on June 1^st.

We didn’t finish the ride together. 

But together we finished the ride.

Ironically, or not, June 1^st was also National Cancer Survivor’s Day.

There were times in those 22 hours and 45 minutes that I would have gladly traded places with Brandon on the bike to ease his suffering, but that was not an option. And I know over the past 12 months, there are times that Brandon would have traded places with me in the doctor’s office, but that was not an option either.

There were times when, by the very nature of the challenge, Brandon had to ride alone. And there are times my path has had only room for one.

Perhaps there are no coincidences.

I spent my first cancerversary surrounded by amazing men and women who not only understand suffering but understand how to transcend it and allow the experience to make them stronger.

Adversity happened. And it will happen again and again. It’s what I do in the face of it and in the aftermath that creates the value of my life.

*Riders of the Trona 308 and Silver State 508 are not given race numbers. Instead they choose identifying totems.