Monday, December 15, 2014

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?

Saturday, November 22, 2014

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.

  • 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!

Friday, October 3, 2014

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.

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!

Monday, August 18, 2014

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.