Flashbacks

This year, in a few more months, I'll mark 10 years since my original diagnosis.  Since then my cancer has sometimes been the gift that keeps on giving.  Some existential anguish of the "why am I still here" variety caused a stress-induced autoimmune disease that took a year for any of the many medical professionals I see to take seriously.  Thank you to the observant and thoughtful nurse who encouraged me to say something at a routine appointment in early 2020; within a couple of weeks, Graves' Disease was confirmed.  I'm happy to say that I'm in remission, having ceased medication over a year ago now, .  Around the same time I could say I'm truly done with Graves', I had another bone density scan, the results of which indicated I could no longer put off more serious treatment of the osteoporosis in my spine.  Thank you to the cancer treatment that has kept disease from coming back.  Also, eff you, treatment, for requiring more and more treatment.  Anyway.  After scheduling an infusion of Reclast for early this year, and then rescheduling and then rescheduling again, because health insurance in America is about profits and not people, I finally had the infusion last Thursday.  First flashback: I'm getting an infusion.  I will be steeped in chemicals.  Second flashback: I hate IVs (only a mild vasovagal response, rejoice).  Third flashback: this chair is lovely and comfortable and all the loveliest art on the walls and the friendliest and most compassionate medical staff cannot hide the fact that I'm here because something is wrong with me.  Fourth flashback: side effects are a bitch.  My knee is still, three days later, the size of a cantaloupe, its excess fluid showing no signs of being resorbed by my body.  Fifth flashback: I cannot do the simplest things on my own, because I am betrayed by my physical self, let alone help anyone else with the things I could normally help with.

Other than that, though, things are quite fine, and I woke up this morning, in almost no pain.  This is a gift.  I do not take it for granted.  The past few days were not fun and I expect the next few will not be either.  After that I'm sure all will be well.  I haven't been on this blog for a couple of years.  All it takes is a couple of very lousy days.  Writing is therapy.  Pity party now over.

Everything is so fragile.  It takes almost nothing to tip the scales.  We know because, shit, look around.  If you woke up in America this morning too you probably know what I mean.

Well, at the very least -- here's to waking up.  

SIgn of the Times

 An artistic collaboration with Connor Thomas 💙

Another year, another marathon!

Once again, I've registered for the Boston Marathon Jimmy Fund Walk.  This year we get to go back to the actual Boston Marathon course - EXCITING - I cannot wait to see my cancer-fighting companions on the course, and give the honorary tap to all the Walk Heros along the way.

I don't write here so much anymore, but that doesn't mean nothing is happening.  Luckily truly nothing is happening on the cancer front - I am still cancer-free.  This year my next colonoscopy is due; no problem, just give me that sweet, sweet IV (that I hate) and let me sleep through it.  

Not-as-luckily, I've had a couple more diagnoses that I attribute directly to my cancer experience.  In early 2021 I was diagnosed with Graves' Disease, an autoimmune disease caused by hyperthyroidism.  I lost a ton of weight the year before and noticed my heart was beating hard and fast a lot.  An attentive nurse at one of my routine doctor visits suggested I mention these symptoms to the doctor, and many tests later, lo and behold, hyperthyroidism.  This condition can be triggered by stress.  I've had so many medical appointments, I have a lot of historical data on my weight and heart rate, and I can tie this diagnosis back to some particularly stressful work events, that were stressful in large part to cancer-survival-realizations.  I'm on medication and it has helped tremendously.  Trying very hard to live the stress-free life.

Last summer I also finally had a scan to establish a baseline for bone density.  Given my medically-induced early menopause and radiation treatment, osteoporosis was always something I'd have to think about.  Graves can also exacerbate bone loss.  Anyway, I have osteoporosis, too.  I am not taking any medication yet because too many potential side effects that I just can't deal with right now - I am seriously over-quota for medical nonsense.  Instead, I'm hyper-aware of my calcium intake and doing a lot more weight-bearing exercise.  

Cancer is the gift that just keeps on giving no matter what you do, better or worse.  But I'm still here and I'll walk another marathon and fight this good fight for as long as I can.

Onward and upward.

Cutting the Cord

After 4 surgeries, 12 rounds of chemo, 28 days of radiation, more than a dozen CT scans, and a couple colonoscopies...  two days ago I achieved the 5-year post-treatment milestone and there remains No Evidence of Disease.

It is a happy milestone, one that sadly too few people see.  I am beyond grateful.  I am awestruck at the miracle of modern medicine, and the pictures we can take of our insides.  I still greatly dislike IVs and medical diagnoses of any kind.  I am still here.

At this point I no longer have to return to DFCI for regular scans or blood work.  Time to cut the cord.  To ease the separation, I can return annually for labs to check my tumor marker.  This is for peace of mind and I will take it.  In fact, at my checkup this past week, that marker had ticked up a little bit, for no apparent reason.  I'll have it checked again in 3 months and then, sans the return of any symptoms, I'll be simply an annual visitor, passing through the lab. This is the happiest of outcomes, and it makes me so nervous.  

I have a memory from the hospital.  There was a day after The Big Surgery - I cannot recall now which one exactly - and I was returning to my hospital bed from the chair.  I think maybe I had just gone for the day's walk, or it might have been the day the nerve blocks came loose... whatever it was, I was in the chair, and I was so tired.  I remember it was the afternoon and the sun was slanting in through the window.  The nurse was changing the sheets of my bed, these white sheets, and it was like she was glowing in this afternoon light, soft yellow halos around everything.  She helped me to the bed and I sunk into these fresh clean sheets, and the bed was in the exact right position, legs up just a bit, knees bent just right, torso relaxed, all the pain meds working perfectly.  I remember feeling so comfortable.  In my mind, in my recollection, it is the most comfortable I have ever been.  Imagine - 2 or 3 days out of major emergency surgery, treatment looming, all the unknowns - and yet so completely relaxed and calm, and peaceful.

I meditate on that memory, on that feeling of comfort and peace.  It is the feeling I try to get back to.  Graduating from survivorship maintenance is a relief and it is scary.  Here's hoping we all find the comfort and peace we are looking for. 

C is for Cure

Yesterday I had an appointment with my oncologist to review my most recent test results.  The CT scan I had a few days ago marked 4 years NED (no evidence of disease).  Results were good - nothing on the scan, tumor marker fine - though a liver enzyme was slightly high.  I'll repeat blood work in a couple weeks and hope it reports normally.

So, one more year.  Then I'll have the same risk as anyone else to get cancer.  I'll come off survivorship maintenance.  Well, still a happy colonoscopy every 3 years, but I think the other routine blood work and scans will stop.  I hope they stop.  I'm still a needlephobe and that contrast stuff feels weird.

In other news, I've started training early for my next Jimmy Fund Walk.  This year is "your way" thanks to COVID-19 and I am still figuring out a marathon-length route.  I revisited my alphabet and realized I had never walked a letter C.  So I walked one.  And then I found the great big C that I did in fact walk last summer but did not tell most of y'all about.  Here are 2 letter C's.  C is for Cure.  Just 8 more letters in my alphabet!

We Are All Cancer Survivors Now

During these last few unprecedented weeks, a familiar feeling has been nagging at me. 

I am reminded of my treatment year, when we were so very careful to keep germs away from me, and me away from germs.  I was immunocompromised then, so much so that I had that super-expensive injection to keep my white blood cell count up.  On the days I went to work, I used the bottle of hand sanitizer on my desk as soon as I got in; that same bottle is still on my desk, nearly empty, and all alone in my empty office.

I am reminded of the days in between my every-six-months scan and the followup appointment with my oncologist when scanxiety runs rampant. 

I am reminded how in the years since treatment and my last surgeries, no matter how long it has been or how good the current prognosis, even the tiniest new twinge or strange sensation in my belly convinces me that It Is Back.

And now, I can welcome you all to this state of mind.  Now that we are all (hopefully) staying at home most of the time, and riding out these very strange days, you may have an inkling of what it feels like to be a cancer survivor, as you over-analyze every cough and ache and pain and wonder, do I have It?  Will I end up in the hospital?  Will I survive?

Welcome to my world.  It's nice to see you.

Number of the day is 5 (and letter is W)

I've just registered for Jimmy Fund Walk number 5!  I remember the first time I walked, in 2016 - about 5 months post-treatment, sporting ostomy #2, for a half-marathon distance.  Since then I have walked 3 marathons, each one a little easier than the last.  I'm excited to participate again to celebrate winning my fight and to support everyone else who has had to face the challenge that is cancer.

I welcome your support, financial or otherwise.  Thank you!
http://danafarber.jimmyfund.org/goto/eemthomas