It has been a while since I last updated, quite a few changes have occurred, some planned, some not so much. However, we keep plodding along, mostly in the right direction, I think. On Wednesday, the 25th of September, I had my 4th CT Scan of the year, don’t know the results yet as trying to be sure it gets read by a good reader (have had some CT scans read that are a bit questionable of late, so wanted to see if the tech could assign me a good reader, even if it means waiting a few days to send out the scan to the assigned reader for the day). This is an option when one has to pay cash for the scans anyway at a private CT machine, they are more accommodating than the hospital situations, thankfully, plus you can bargain for a lower cash price with the promise of future scans done there. Will see if the questionable areas have resolved somewhat. I did recheck my 3 tumor markers the same week and they are back to normal for the first time since checking them before surgery.
The chemotherapy seems to build up with more severe side effects with time and also having less desirable troubles, it also seems. The neuropathy seems the worst, the anemia and the GI effects are more tolerable in my case as least. My hands and fingers were supersensitive for 2 days after the 2nd treatment, lengthening each time by another day or so, to the point that I cannot take cold eggs out of the refrigerator to make my breakfast as the cold stimulation causes severe burning sensation in my fingers and I cannot hold them long enough to crack them into the pan. The same seems to be happening in my throat, so that anything reasonably cold makes the throat go into a spasm. Dr. Pawl, my oncologist, is concerned that the damage may become permanent, so he has stretched out the treatment cycles to 4 weeks instead of 3, to give my body more of a chance to recuperate. Will see if this works out, although I do need to see if can do the last treatment (the 9th and last scheduled treatment at this time at least) of the year and this treatment cycle a week early, as it is scheduled for Christmas day and don’t want to move later as the year’s deductible has been met (at a cost of about $600,000 in medical expenses for this year, we went well beyond the deductible, of course) and don’t want to pay extra for that last cycle. At present, each 3 week cycle costs about $3000 for our cost, so don’t want to add to that. I had my 6th IV infusion 2 days ago, on the 2nd of October, that went well, but eating and drinking is becoming a major chore afterwards due to the nausea and GI upset. Plus, the energy level seems to be more reduced, especially after the steroid burst they give to reduce allergies with each IV infusion wears off.
The good thing about the changes are that our next planned trip to Haiti will be October 18, originally scheduled so that it would be my week off chemotherapy, so that I would be the most productive there, plus flying has never been a fun thing, with chemo induced nausea, likely even less so. The bump caused by the missed chemo in August moved the 7th treatment to the 16th of October, 2 days before I will be taking a team from Zeeland, from Lamar Construction to work on the hospital chapel. However, with the latest changes, I had the chemo on the 2nd and will have it again on the 30th of October, so will not have it 2 days before departure, increasingly a good idea as each treatment seems to last longer and hit harder, so thankful for that change, seemingly for the better. The Lamar team will have their hands full trying to get the job done, although they assured us they would be able to do the work in 2 days, so what would they do the rest of the week? Not sure they understand that things take considerably longer in Haiti, no cranes to hoist up the beams, etc and getting a dozen extra Haitians work in synch with you with the language barrier, etc, can be a bit of a challenge. Will see how it goes.
Duane and Ruth arrived at the hospital yesterday, to prepare for the team and sort out the 2 x 40 foot containers of supplies shipped in the last few weeks and put wherever a spot could be found, a bit frustrating to the very organized Duane, I fear. The truck driver we always use is amazingly good at backing the truck into tight spaces, but he was waylaid along the route and the roadside bandits who are always plentiful in Haiti, relieved him of all his cash (he has to take a bunch for fuel, etc) and ID, etc, so he was rather rattled when he arrived at the hospital and the unloading didn’t go at all as planned. At least we have a special permit to take the customs sealed container to the hospital for unloading, so the contents were untouched, as even the robbers are reluctant to take on the government customs agents. Duane had explicit plans for placing the contents in proper position, I think that went by the proverbial wind when it finally arrived 2 days later, on a busy clinic Monday instead of the planned Saturday. The second container arrived without problems, but where those contents are will be a surprise for Duane.
I seem to have a considerable amount of administrative things to juggle and sort out, the bad thing about missing trips to Haiti due to my medical condition, and need prayer to have God’s wisdom to do things properly. The latest government rule is that they want us to use Electronic Medical Records at the hospital. The government, undoubtedly with encouragement from US sources, who are probably paying for the computers and the people taught to teach us to use the system, is going to donate 4 computers and want us to convert all our records to electronic. These systems are still rather bulky and ungainly in our usage in the US, witness the 20 pages of notes we get each time one of my patients goes to the ER now, instead of 1 or 2 concise pages in the past years, and trying to find useful information there I find at times impossible, so foisting that on the Haitian system is nigh unto ridiculous, I think. Surely there are some epidemiologists (or however you spell that word) at our fine institutions of higher learning, like John’s Hopkins, who would profit from all that data they could then spout on ad nauseum about medical situations in the 3rd world, but this certainly would be a totally unuseful and unmanageable concept to use out there. Many times, a patient recounts to me (we don’t have the system yet in our office, cringing about the thought) that they went to see a specialist and the computers were down, so no one could access the information stored there, so had to wing it for the day, yikes. Of course, the larger systems, like Spectrum, have more backups, but even there, we have heard some horror stories about miscommunication between less than compatible systems and people, etc. Since we don’t even have reliable electricity, plus no where near the staff, to do this safely, it is a laughable concept, but again, USAID provides funding for this project and people are eager to have a job, even if it is essentially useless. The financial reports continue to be a bit baffling, hope that they will make more sense when I can talk directly to the accountant in a few weeks. Plus, there are a number of staff conflicts/misunderstandings that have accumulated in my absence and seem to need attention to hopefully resolve them.
Will send this out as many of you have been very faithful in praying for us and my medical progress specifically, something we greatly appreciate and wanted to update you before we leave for Haiti again. Thanks very much for your concern and intervention on our behalf before the Great Physician, who we want to serve faithfully with whatever days, months or years He gives us.
Bill, Karen and the rest of the crew