Body Parts

Jeff was doing well enough to drive to the city, I thought.  He is alert and clear-headed, lasts longer before requiring a nap, and is stronger.  When I suggested he drive himself to his in-person appointment with Dr. Porter, he was surprised. 

Some of what it takes

“Do you think I can?” 

“Yes, don’t you?”

“I guess I can!”

He was like a teenager being granted car privileges for the first time, excited and a little apprehensive.  

In Dr. Porter’s office, Jeff called and put me on speakerphone.  Dr. Porter is very happy with Jeff’s blood counts.  Platelets and white blood cells are in the normal range and hemoglobin is inching towards normal, in the 11s now.  Jeff reported that he is still getting winded when climbing stairs but Dr. Porter says he can no longer blame it on the hemoglobin.  Time to get in shape! 

I referred to my list of questions and asked if Jeff could enjoy a beer once in a while.  Dr. Porter said while watching for GVHD he would prefer Jeff avoid alcohol which can give confusing results on blood tests.  They will need to watch his liver closely in this window of 1-3 months post-DLI.

“A half a beer on occasion would be okay,” Dr. Porter conceded.

Not a problem.  Jeff isn’t much of a drinker but would enjoy a beer – or half of one – now and again.

Jeff also reported some weird issues with various body parts that he might have mentioned a month or two ago but didn’t.  He had something on the roof of his mouth for months until one night while eating tortilla chips, it disappeared.  Dr. Porter looked at the area and referred him to his dentist.  A semi-annual visit with the dentist was already scheduled for later that day.

The dentist took an x-ray, diagnosed an abscess, prescribed an antibiotic and said Jeff needed to have the molar extracted in the next couple of weeks.  There is bone loss in the area and it is quite infected. 

The first oral surgeon we called wanted to know if Jeff needed hyperbaric treatment prior to the surgery, how many rads he received during his full-body irradiation in 2011.  We checked with Dr. Porter who deferred to the oral surgeon.  We were left wondering, “Is hyperbaric treatment really necessary?”

After consulting with my sister Judy (a retired hygienist) and, through her, a dentist whose opinion she values (a former boss), we decided that it was better to get the molar out sooner rather than waiting for a series of hyperbaric treatments.  We called another oral surgeon who could accommodate Jeff right away.  Jeff was asked which of their two surgeons he would like.  Jeff, not familiar with either one of them, quipped, “The good one.” 

The surgeon did not want to be too hasty.  Jeff assured him that Dr. Porter had cleared him for surgery – better not to have an infection!  I presented the lab results on my phone and, finally, he was satisfied.  The man was thorough and, although he lacked bedside manner, we appreciated the care he took. 

The tooth was easy to extract as Judy said it would be, given the bone loss in the area.  It came out in one piece and yet Jeff thought there were a lot of tooth bits flying around.  He has had relatively little pain in the area since.

Another weird body part issue he might have mentioned but didn’t:  sore breasts.  Nurse Heather joked, “Are you ovulating?”  Jeff thinks that’s a sign that your medical professionals know you really well, when they can joke about anything.  Dr. Porter says we will have to pay attention, wait and watch.

Yet another weird issue: facial rash.  We’d thought it was mask-ne (acne in the mask area) and Dr. Porter agrees.  Nurse Heather, however, remembered reading a report from the dermatologist that said he had “quiet” rosacea.  Well, it isn’t quiet anymore.  The right cheek has splotches that can be subtlety pink or flaring red, pimply or hive-like, slightly raised or quite swollen.  Sometimes his eyelid, nose or forehead is also affected.  The changes occur rapidly and often throughout the day. 

“I’m like a mood ring,” Jeff says.

Jeff and I have both gotten our first COVID-19 vaccines.  It is embarrassing for me to admit that I have gotten my vaccine - not old enough, not sick, maybe not my turn.  Jeff, of course, is Phase 1 and eligible for a vaccine.  Our family is relieved Jeff finally got vaccinated before the potential for GVHD, thanks to a tip on available appointments from Niece Melissa.  Family members believed I should be Phase 1, as caregiver to an immunocompromised person.  However, that does not qualify me in Pennsylvania.  Son Kerry insists I qualify in Phase 1 because of my BMI.  I rationalized; maybe that is a valid qualification for me.  I have been concerned about my fitness at a time when we are supposed to stay healthy to fight COVID should we contract it.   I had not been exercising as usual because Jeff is often eager for company after my at-home work day.  If we exercised at all, it was at his level and speed.  So, I decided to Own My Obesity and schedule an appointment. Kerry grabbed an appointment for me one week after Jeff’s.  Because Jeff got the Moderna vaccine (2^nd dose at 4 weeks) and I got Pfizer (2^nd dose at 3 weeks) one week after Jeff’s, our second doses are on the same day!

Through our friend Michael, I was put in touch with BMT Infonet, a post-transplant group out of Chicago.  They invited me to facilitate a writing workshop at their annual symposium in April.  I’ve had my training for the virtual event and look forward to hosting probably three sessions, probably caregiver groups, to spend time exploring and practicing writing techniques that are useful for healing.  There is a waiting list of 150 people for these sessions.  Obviously, there is a need.  What a gift to be able to spend time with other people connected to bone marrow transplantation and who are interested in writing.  Visit BMTInfonet.org.

First Towpath Hike of 2021

Jeff and I take increasingly longer walks around our neighborhood.  Today we resumed our Delaware Canal Towpath hikes with a 5-mile trek.  Jeff was proud he could keep up and last that long.  He was a little stiff at the end but wants to get out there again very soon!

Thank you for caring about Jeff and me.  We are grateful every day for the people we have supporting us, near and far.