10-Year Survival, Remission and the Impatient Patient

“I’m tired of being sick,” Jeff told me in a rare admission of frustration.

“I bet you are,” I told him.  “I don’t think I would be as patient a patient as you have been.”

It’s odd to have had this conversation when we’d heard some very, very good news this week.  We’d waited very patiently (really and truly) for the results of the last bone marrow biopsy.  We believe this was the 13th or 14th biopsy since diagnosis in 2010.  We didn’t expect bad news.

The results came in dribs and drabs over the last couple of weeks.  As each of the many tests performed on his marrow were completed, we’d get an email saying that a new test result had been posted on Penn’s portal.  One test showed 1% blasts (immature cells in the marrow) which Jeff feared was bad.  I thought we all probably have blasts.  Dr. Porter confirmed that under 5% blasts in the marrow is normal.  In fact, Dr. Porter was so pleased with the results that he said Jeff should consider himself in remission!

Dr. Porter noted that there was still one test result that wasn’t in yet – the chimerism test which shows how much of Jeff’s marrow are Nicole’s cells.  By the end of the week we received the “New Test Result” email.  I checked the portal to find a welcome number, >99% Donor Cells!

Why, then, isn’t Jeff happier?  Last week’s blood work showed only a marginal improvement on one of his liver counts and no improvement on another.  Dr. Porter was comfortable reducing Prednisone by 10 mg to 50 mg and will reevaluate after this week’s labs.  More of Jeff’s issues are steroid-related rather than caused by the disease the steroids are supposed to treat.  GVHD is causing: abnormal liver function, blurred vision (tear ducts are scheduled to be blocked to help this), some skin issues and brittle nails.  Side effects of Prednisone include:  irritability, large muscle weakness, sleep disturbance, irritability, profuse perspiration, dehydration (resulting in leg and hand cramps), irritability, high glucose levels, low platelets, easy bruising, weak voice, dizzy spells, Moon Face and irritability.  And constant hunger.

Jeff has always had a healthy appetite but now prepares large meals which he manages to consume, often leaving no leftovers.  He scrounges for snacks (avoiding sugar) and gets hangry.  I keep hard-boiled eggs on hand for when he is suddenly ravenous but he adds them to our large meals as if they’re a side dish.  I tried a new recipe for healthy banana bread that uses a little bit of honey and chocolate chips.  To avoid him eating the whole loaf in a couple of sittings, I froze some of it.  He eats a chocolate chia pudding I made with coconut milk, a “treat” he would eschew under normal circumstances.  Nuts, removed from his diet by the kidney specialist a few years ago, are now back on his plate.  We bought Gatorade and a bag of avocados for replacing potassium and other nutrients depleted by profuse sweating.  

Over the last few days I noticed Jeff was frequently slurping saliva, a quick phlooping action.  When I asked him about it he sassed, “Oh, it’s just something I do to annoy you!”

I waited a moment to respond to Steroid-Jeff, “I thought it might be a new side effect that you may want to mention to Heather.”

Later, when Real-Jeff returned, we discussed what might be causing excessive saliva in his mouth.  I Googled the issue and learned some medications cause it – none of the many Jeff is taking, however.  It could be a muscle issue, I learned.  Except he can swallow without difficulty.  We puzzled over it and put it on the list to ask Nurse Heather.

Jeff pondered some more and came up with a theory:  Steroid-induced “Moon Face” puffs his cheeks away from his gums and teeth creating a cavernous area that somehow prevents drool from being absorbed in a normal way.  I think he might be onto something.  And what, pray tell, will be the solution for this? 

A blood test was run to find out whether Jeff developed any COVID antibodies since his vaccination; he was “stuck” in March – squeezed precariously between his last treatment in February and the start of immunosuppression (Prednisone) in April.  Evidently, he had a “weakened immune response” and developed only the IgG antibodies and not the IgA antibodies.  Not enough is known about this response but Dr. Porter feels that Jeff likely has some protection against the virus.  We will continue to be careful.

Since our last post we celebrated May birthdays including Jeff’s 10-year Transplant Anniversary.  I made a chain out of the hospital bracelets that Jeff saved.  We shared a cake with our kids and grandkids to celebrate Jeff’s and Kim’s shared anniversary/birthday.  That was the extent of the celebration.  If the pandemic were in the rear-view mirror we would have had a big party.  Maybe next year…

Our canal towpath hikes continue although at some cost to Jeff.  After a hike we push Gatorade, water and potassium-rich foods to replenish nutrients lost through copious sweating and not sufficiently managed by drinking water en route.  We continue this treatment (plus Epsom salt foot baths) until his legs and hands stop cramping.  When I suggest we cut a hike short or propose not doing it at all Jeff says “We have to.”  Our goal is to finish the last 11 miles (X2 because we do up-and-back hikes) to reach Easton.  A few more trips should do it.  Tramp on.