Hi All:
Since I last updated the situations, the protruding tumors
out of my ostomy site have continued to grow, making it a struggle to contain
them and the intestinal output the colostomy and ileostomy contribute to the
bag. We have looked into various options, they make larger bags, but they
don’t have fasteners on them as the ones I presently use have loops that I can
attach a belt to and thus encourage sticking to my skin. The larger bags
are made for patients who are pretty much bedridden for the time, so we are
still looking into options.
One thought I had was to consider radiation therapy,
somewhat risky for intestinal tumors as the intestines, bladder and lungs are
especially sensitive to the radiation, while the tumors may not be. I
thought I would contact Dr. Bartlett at University of Pittsburgh Medical
Center, as he has done over 1000 of these surgeries and likely had some
experience to comment on. I called his nurse, the recording mentioned to
push various buttons for a number of different surgeons, but no Bartlett.
Searching on the internet showed that, after 19 years at University of
Pittsburgh, Dr. Bartlett had been enticed by the other powerhouse in the
Pittsburgh medical realm, Allegheny General Hospital System, a promotion to
head up all their cancer research and work 3 months ago. The internet
stated that he would be busy with administrative duties for several months and
then restart clinical practice and research. The donkey decided that my
chances for getting through to him in a new, unfamiliar system would be unlikely.
Dr. De Cook thought that radiation might help shrink the growths sticking out
of my abdomen and give us some relief in the way of controlling the
output. I made an appt with a radiation oncologist and saw him last
Thursday. He was very nice (I knew him a bit from surgical residency, he
is 75 but loves his work and thus still doing it), examined me well, but
finally felt that he figured he would do more harm than good.
With this news, Rachel decided the donkey gave up too easily
and contacted Allegheny General and was able to connect with Dr. Bartlett’s new
nurse navigator. The nurse promised that she would have Dr. Bartlett call
me this week when he returned from vacation. I was skeptical, but was
amazed when he called me at 9 am this morning and we discussed options for a
bit. He wants a repeat CT scan sent to him, he will get my records from
UPMC and consider the case. One option he presented was to repeat the
surgery he has done 3 times on me already, an extensive, 15 hr marathon with a
lot of risk, needless to say. It carries a greater than 5% mortality, as
hours under anesthesia, lots of scar tissue, etc, make this a land mine
infested territory to travel through. However, I am not sure what
reasonable options remain, other than just watching the tumors grow, leaking
bags to try to control the outgoing intestinal contents and always smelling a
bit off due to the situation.
Dr. William called last weekend, he hopes to be done by
August 31, though still has to write and defend his thesis by the end of the
year. Dr. Luke Channer has been helping him with getting access to
information via the internet, as I am out of my element in that area.
Thus, I am excited about arriving at the end of this long struggle to be able
to provide 24/7 surgical coverage for the hospital, our dream for the last 17
years. He already has done an evangelistic campaign during the summer
with a pastor and they have a group of about 60 new believers who are meeting
under a borrowed tent until they can arrange for a bit more permanent
accommodation. I am excited that he and Dr. Moise do this in the summers
and a new church is being formed in the area. It will also be good to
have him back home with his 5 active sons, undoubtedly a relief for his poor
wife after all these years. Pray for a good adjustment as he reintegrates
back to the hospital. Overall, the hospital seems to be functioning well,
Covid doesn’t seem to have hit Haiti anywhere nearly as hard as it has been
reported to strike the US and other countries, how to interpret that is
unclear. I have not been able to contact Dr. Moise since we talked on
Saturday, so not sure how they survived the hurricane on Sunday
yet.
So, would appreciate prayer for wisdom for the Donkey as he
considers the alternatives before us. The huge repeat surgery would be
risky and difficult, but I must admit I don’t enjoy much having the tumors on
my belly either. So, will get the repeat CT scan and see what Dr.
Bartlett suggests and go from there. As always, thanks so much for
praying for us, supporting us in that way and so many other
encouragements. Will update you as we get more information.
In HIs Service,
Bill, Dan, Duane, James, Jenn and Rachel