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

Mood

I was thinking today that I’ve been through a lot.  Not just the cancer and the treatment and the surgeries, and this ongoing survivorship maintenance reminding me that at any moment it might come back.  That seems like enough.  But there was a lot before that, too, equally awful.  And I have not given up, or despaired, or played the cancer card, or any of the other cards I could play. Everyone goes through hard things, difficult things.

So I feel it’s important to say to myself, to whomever, that it’s good to recognize the shit you’ve been through, that it was shitty and difficult and you’ve been through it and you survived.  And you are tired, because surviving is all on its own just exhausting.  And you survived for a reason - you’ve got better things to do, better experiences to find and to live through, better things to build, people to be with, art to make, changes to make.

I’m thinking, then - I went through all those things, am going through these things, and you are too, so I think we owe it to ourselves to do and be things that make us happy and not do or be things that don’t.  I feel like I’ve put up and put up with all these appearances, and now I’m putting the world on notice. I’m not playing any more of your reindeer games.  I did not survive for that.

Cheers to doing and being better, to some rigorous personal honesty.