Seymour the Seagull

Last week the entire family went to Boston for three days so that I could have my annual check-up at Boston Medical Center, and so that I could visit Dr. Laubach at Dana Farber.  I barely remember going to Boston Medical Center last year because I was consumed with the prospect of  myeloma.  My check-up this year was good –both my amyloidosis and my myeloma stay in remission.

But let me backup a bit and catch you up to speed.  I had been taking carfilzomib (Krypolis), lenalidomide (Revlimid) and dexamethasone.  During these months of treatment, I occasionally felt slightly short-winded.  Sometimes I had to stop at the top of the stairs to catch my breath.  These episodes never lasted long, and they seemed quite mild.  My oxygen level was always perfect.  Simple shortness of breath can be a side effect of carfilzomib, so we were just keeping an eye on these episodes.

Then one day at the end of a chemotherapy infusion, I had chest pain along with the shortness of breath.  Had I not been at chemotherapy at the time, I may not have gotten attention for these symptoms.  It’s possible I would have ignored them.  You know, the plumber’s sink is clogged, and the dentist’s teeth have tartar all over them.  Anyway, the Cancer Care doctor sent me to the ER (my own ER!), and I had a full work up, including two troponins and normal d-dimer and a bunch of other stuff.  Yes, that’s right, a normal d-dimer (for the medical types out there).

As part of the follow-up for the ER visit, I had an echocardiogram of my heart.  I was not at all worried about it ahead of time, and had no anxiety about what the result would be.  I was sure it would be fine.  But it was not fine.  I had diastolic dysfunction with left sided remodeling, and pulmonary hypertension with right sided remodeling.  I had heart damage!  What?! This was the last thing I was expecting! The previous echo did not have these problems and Dr. Laubach is quite sure they are from the carfilzomib. Many chemotherapy agents can cause heart and lung damage, and carfilzomib is one of them.  Awesome.  Just awesome.

Have you ever had a treadmill stress echocardiogram?  I did, and now I understand why it’s called a “stress” test.  I managed to get my heartrate up to 155, even though I had taken my beta blocker that morning.  I kept my heartrate above 150 for 20 seconds,and then Dr. Gelwix asked me if I wanted to keep going.  Are you freaking kidding?  Holy cow! But the good news is that my exercise tolerance is actually above predicted for age, and I have no ischemia (blocked heart vessels).  Another echo since then indicates that the heart damage is already getting better, and it will probably go away completely with time. Whew!

So, on to the next chemo regimen – my third in a year.  I seem to be using up my options awfully quickly! Now I’m on cyclophosphamide (Cytoxan), pomalidomide (Pomalyst) and dexamethasone.  I’ve completed one cycle already.  Cytoxan is an old school chemo drug, used in about 20 different cancers. It calls to my mind a gaunt, bald, puking person.  But weirdly, I feel great!  I mean great!  I feel better than I’ve felt all year. Isn’t that strange?  It makes me realize how awful I had been feeling.  I had gotten used to feeling piss poor, and now that weight has been lifted off my shoulders.  Whee!  James and I are trying not to look too closely at this, in case it runs away like a frightened animal.

Partly as a result of the extended chemo vacation while these changes were being made, we’ve had a spectacular summer with lots of great experiences both near and far.  James and I went to Quebec City, which is only 5 and a half hours of driving from here.  Everyone speaks French and the city is really old with narrow, winding streets, so it felt as if we were on a different continent, but we didn’t have to buy plane tickets. Perfect! James and I have also done some wonderful hiking.  In another universe, I am a forest ranger instead of a doctor.  It turns out my heart still works for me pretty darn well, because those were some tall hills we hiked!  We all went camping on Grand Manan Island, Canada, in the Bay of Fundy, where we stayed at an ocean-front campsite at the edge of a cliff.  Little kids are not permitted at the cliff-edge sites. Porpoises, minke whales, seals and bald eagles could be seen from our camp chairs.  Tess adopted a particular seagull that loitered around our campsite, and its name was Seymour.  Seymour tried to steal potato chips off our picnic table.

I continue to have no match for an allogeneic transplant.  I’ve entered a different realm of co-existence with this fact.  Namely, I’m ignoring the option of allo transplant altogether.  Waiting, day after day, is much too painful.  I may never get a match, and then I would have wasted an awful lot of time waiting. So I’m not thinking about it at all. Rather, I’m getting off my duff and getting on with it.  “What is IT?” you might ask.  IT is traveling, hiking, camping, gardening, reading, knitting, taking care of my kids and hopefully doing a little doctor work

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