Skin, Eyes, Lungs, Bones, Marrow and +1 Pill, -1 Pill

My sister noticed that our blog entries were more sporadic these days and she took that as a good sign.  It’s true that Jeff is doing well and there is no need for frequent updates. This was a busy month, though, so there is a good bit to report.

  

Last week Jeff went to the dermatologist at Penn.  The doctor who had been seeing Jeff evidently was a fellow; her term is up and so she is gone already.  Dr. Samini took the reins and, after examining Jeff, left the room and returned with three other doctors.  Each of them looked closely, touched his face and said, “Hmmm.”  They left the room to “discuss.”  I was not with Jeff at this visit so he took advantage of the time he was alone to text, “Getting other dr to look at my face.”  Later Jeff texted, “Not gvhd it is rosacea.”  The doctors told him that it did not present as typical GVHD or typical rosacea.  The cause is a combination of his medications and the sun.  The agreed- upon treatment is anti-bacterial gel twice a day and Jeff is to call if there is any change either way.  To me that means, “We’re not really sure, so keep us posted.”

On the return train trip Jeff texted me again, “All 4 Dr loved my hat thank your wife.”  He’d told the docs that if I loved him, I would wear a goofy hat to show support.  They insisted his hat wasn’t goofy.  He argued, “You walk down the streets of Philadelphia and nobody else is wearing a goofy hat like this!”  Poor guy.  I think it is an awesome hat because it is protecting my honey. 

The next day Jeff saw an ophthalmologist in Langhorne.  After receiving the good news that he does not have cataracts, he was turned over to the optometrist.  He doesn’t need to change his reading glasses but he needs distance glasses for the first time ever!  He only needs to wear them for driving and watching TV which became evident today when we went out.  Jeff forgot his sunglasses so he wore his new glasses with clip-on sunglasses.  That worked fine in the car but as soon as he tried to walk, he put his hands out as if to catch his balance or feel for obstacles like a blind person.  He tripped several times until he got the lay of the land – and walked more carefully.  I think it must be worse to only need glasses with slight correction because he needs three pairs of glasses, plus the clip-ons (reading glasses, distance glasses with clip-on sunglasses, and regular sunglasses).

At Penn yesterday we saw Dr. Rager first.  We reported on the dermatology and ophthalmology visits.  We also got the results of Jeff’s pulmonary function test (good) and Dexascan.  The Dexascan showed some thinning of the bone, called osteopenia, so Dr. Rager prescribed Calcium/Vitamin D.  Jeff moaned about an additional pill.  We also passed on the observation that my niece, audiologist Dr. Lauren, made - Uncle Jeff seemed to have some hearing loss since her last visit back east.  Lauren had told us that hearing loss is very common among cancer patients who have had chemo.  Dr. Rager said that Jeff didn’t need to worry about it yet, unless it was something that was bothering him.  Hmph!  I joked about people with hearing loss never thinking they have a problem.  We’ll keep watching that…

We also got the results of Jeff’s bone marrow biopsy.  Super!  His bone marrow is 99% donor marrow – that is excellent!  The biopsy report said “mildly hypocellular marrow (40%).”  When Dr. Rager saw me studying the report she said, “There is a number there that might look bad but it isn’t.”  She explained that 40% hypocellular marrow is age-appropriate and good.  The report noted “1 Blast” in his marrow.  That, too, is normal.  “We all have some,” Dr. Rager assured Jeff.  Jeff remembered when he had 18% blasts on diagnosis and 23% blasts after four months of Vidazzling.  He was relieved to hear the word “normal” in reference to his marrow. 

Dr. Rager probed a little for any complaints.  Jeff said, “Well, an infected cuticle (or “ugli-cle” or “ouch-icle”), numb feet, excessive sweating.”  She nodded and said, “I know you are doing better, though, because your complaints are fewer and less forceful.”  We agreed a lot of the side effects have diminished.  He no longer rocks when he walks because his back hasn’t bothered him in awhile.

When Dr. Porter joined us, he said, “You are in remission by every definition of the word.”  I think we need to keep hearing that because we’d been stuck on, “There is no true remission with MDS.”  I think he is referring to the AML but I don’t know how to separate the two.  With each repetition of “You are in remission,” we allow ourselves another degree of acceptance and hope, a little relief from the sense that we have to be on full-alert, watching for problems, side effects, GVHD, etc. 

Dr. Porter saw that Jeff’s face still was red and bumpy, and with a cavalier wave of his hand, told Dr. Rager, “Let’s take him off VFend.”  VFend is an anti-fungal and one of his medications that cause extreme sensitivity to the sun.  So now Jeff is up a pill, down a pill, a zero net effect!  And there is a possible benefit to his face!  That is good news to me but Jeff doesn’t care much about that.  He told me recently that his skin problems don’t bother him but the extreme sweating does bother him a lot.

I suggested that Jeff tell Dr. Porter about being on his friend’s roof this week in 3-digit temperatures.  Dr. Porter said that probably wasn’t a good idea.  I thanked him for reinforcing my opinion and, with a chuckle, told him that Jeff doesn’t always “make good choices.”  Dr. Porter said we couldn’t blame them for that and then backtracked, citing the effects of “chemo-brain.”   Maybe it is their fault! 

Jeff was surprised at how much blood they drew at this visit.  Dr. Rager explained that another chromosome study would be done.  It takes a long time so we won’t hear about that for awhile.  When we left the office we did not yet have the results of his liver function tests.  Dr. Rager did not anticipate a problem.  The steroid taper can continue!

We went across the hallway for Jeff’s immunizations:  Hib, TD, Pneumoccocal.  Jeff was told the tetanus shot would hurt and maybe cause a fever for a day or so.  It was, in fact, a little bothersome, pretty sore.  That afternoon Jeff had one of his “kaleidoscope” migraines, a stress migraine that causes “kaleidoscope” vision.  It only lasts a short time.

Jeff has had periods where he seems quiet, contemplative.  I briefly worried that he was becoming depressed with his altered body.  The NMDP literature warned us that this could happen at around one year post-transplant.  Jeff is so good-natured and strong that it didn’t take long for me to see that he was handling it all pretty well, better than most would, I think.  He did confess to me that it really bothered him that he had to rest frequently while on the roof in the heat (go figure!).  There was no reason for him to do that project this week except, I think, he was bent on proving that he could do anything he used to be able to do.  He may have had a breakthrough in realizing that he can’t - and that is o.k.  He can’t run up steps either.  Oh, well.  His need for naps… “Naps are fun!”   Well, none of those things will alter his life all that much.

In addition to all of Jeff’s tests and doctor visits this month, our family had other things going on.  We learned that Keith had been injured in a martial arts training exercise at boot camp and was relocated to the Medical Rehab Platoon.  He has an Acromioclavicular separation which will take time to heal.  When he returns to regular training, he will be put into a platoon that is on or around the same training day as he was on at the time of his injury.

Also this month, my father’s health took a sharp decline and after a week in the hospital and about a week in a nursing home, he passed away on July 17^th.  When Jeff was diagnosed with MDS, Pop said that he wished he could take Jeff’s disease from him.  Pop was ready to go and is now pain-free and at peace.

The night my sister and her daughters flew east from her home in Aurora, Colorado, for our father’s memorial service, her husband was called to area hospitals to minister to his parishioners who’d been shot at the local movie theatre.  Five of their young people were in the theatre and two of the young men were shot when they threw themselves over their dates (chivalry is not dead!).  One of the young women got shrapnel in her head.  It was hard for Tracy to be here when her husband and their friends were dealing with all of that.  Her daughter, Lissa, agreed to spend a day in Aurora before flying home to California.  She and daughter Lauren were able to support their dad and report on his well-being and the victims' conditions while Tracy stayed here an extra week. 

It was really nice to be able to spend a lot of time with family this week, remembering Pop and supporting Mother.  Prayers would be in order for the victims of the Aurora shooting, those who love and support them, my mother and my family as we mourn my father, and cancer patients everywhere.  Wow.  That’s a pretty heavy load.  Thanks for your help.