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