April has been a busy month for our cancer-fighting activities. We participated in spring events for Be the Match, Gilda’s Club and the MDS Foundation in addition to the Gift of Life swab station at the fencing tournament.
We were members of Team Penn for the Be the
Match 5K Walk/Run (we walked) at the Philadelphia Navy Yard. Dr. Porter, Nurse Heather and other Penn staff
members walked/ran with their families and it was fun to see them outside of
the office for once. Jeff’s skin cancer
treatment had finished a week prior and his “chemical peel” left him looking
very young and healthy. I snapped a
picture of Nurse Heather with “Baby Face.”
It reminds me of the 18-year-old Jeff I fell in love with (be still my
heart!).
Our Gilda's Club blood networking
group, usually attended by 6 people, had a whopping 15 people this month
(including two nurses on their oncology rotation). I tell our new members,
"Welcome to the Club. I'm sorry you're a member." Jeff teased
our fill-in facilitator, Beth, to take credit for the group’s popularity and to
warn Marianne, our regular facilitator, not to let the group go to pot when she
returns to us.
As usual there was a fair amount of
laughter but it was difficult to see the newbies’ – as Member Monique puts it – “deer in
headlights” reaction to finding themselves members of this exclusive club. One new member is a fan of homeopathic medicine
and is crushed that she needs toxic treatments to survive. I hope we were reassuring and hopeful but also
truthful about the sucky parts. For
example, Steve, cancer-free at two months post CART19 treatment, relapsed (NHL)
at six months. He participated in the clinical trial phase which was
intended to determine appropriate dosages and, evidently, several participants
relapsed. So, not enough maybe. Also, Michael shared the sad news that he’d
lost a friend last week to Multiple Myeloma, the same disease that he is
managing.
We attended a luncheon for MDS families in
Philadelphia where we met a couple, Maureen and Phil, who expressed their
attitudes about Phil’s MDS diagnosis similarly to the way Jeff and I did
initially – Maureen carries the burden of the anxiety and Phil shrugs it
off. Maureen arrived at the luncheon with
stress lines on her face and left looking relieved and feeling grateful to have
met a survivor like Jeff. She repeatedly
remarked, “Just look at him!” By now
Jeff’s skin is looking baby-soft and smooth so that he makes an excellent
poster boy for bone marrow transplantation and survivorship.
When Jeff was about half way through his
Fluorouracil topical chemotherapy, Dr. Samimi had him schedule Mohs surgery for
the spot she’d biopsied and found Squamous Cell Carcinoma. The surgery was scheduled for today. Nurse Katey took pictures and explained the
procedure. She told us a lot of patients
do not follow the instructions for the topical chemo and do not get good
results but she could see that Jeff had obviously done a good job. Dr. Sobanko agreed that the area was not
remarkable. “I see only the biopsy scar,” he said.
We’d prepared for a long day of scrape and scan/wait
for the lab, scrape and scan/wait.
Instead, another biopsy was performed and we waited for the lab to
process the sample. Eventually, the lab confirmed
that the topical treatment had taken care of the cancer! The area – in fact, all of his skin - will
have to be monitored and Jeff happily agreed to make and keep his dermatology
appointments every six months (or sooner if Jeff notices a change). Penn’s dermatology department is part of the
bone marrow transplant team. They dedicate
one day each month solely to bone marrow transplant patients. It is a relief to know they see lots of patients
like Jeff and can catch these things early.
Of course, part of the credit goes to Baby Face himself who did as he
was told!
No comments:
Post a Comment