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Question: Feeling any pain?
Answer: Physical pain? Very, very little. I feel better physically than I have in years, though the chemotherapy leaves me very fatigued. My pain medications came down 25% from what they were last fall. That's the good part. Emotional pain is different, and I am struggling. The case is this: I know what I am taking my family and church through is difficult and painful for them. I wish I had a way to keep them away from emotional suffering that occurs when someone you love is dieing. Sue & Michael know the full story, and they are functioning well. They will mourn, but also recover with time, I feel certain. My younger son Matthew doesn't know about the proximity of death for his father. Right now, there is no immediate need to inform him. With Michael, he asked some questions and required some honest answers. Thank God this happened when he & I were at home together alone for several hours. We had a good cry, I shared a lot of the humor, and I can see him take on more responsibility and treat me a touch differently. I am praying that when the similar questions spring from Matthew that I will be able to tell him. This one I am trusting God with. The church adults know the issue and they are mostly handling things well, and for a few it has been a growing experience.
Question: Taking any drugs?
Answer: A lot less than you might expect. The one covering MS symptoms is a single capsule three times daily. There's also an anti-flu medication used for some people with MS and I take that twice daily as well. For the cancer I take a standard anti-nausea capsule every twelve hours and the oral chemotherapy drugs. Daily vitamins pretty much round it out. Nothing illegal, nothing experimental (yet.)
Q: How do you get to the hospital? How long do you stay?
A: I go Monday - Friday, leaving the house about 8:30 or so, most days returning by 11:00 am but occasionally staying all day. Men from my church drive me their in their cars. I get a radiation treatment (preceded by a scan) each weekday. On Tuesdays and Wednesdays I get time with a doctor. Tuesdays is with the chemotherapy doctor, and Wednesday is with the radiation doctor. Tuesdays also requires a trip to the pharmacy to get more of the chemotherapy drugs. If any specialist on the team requires it, I also have to stop in and be seen. Last week I had my follow-up with the surgeon who took the cancer out. As I write this, the coming week has no additional appointments, but following weeks will bring more. I am a full project between the Department of Defense and the National Institute of Health.
Q: What is this about the National Institute of Health? Why are they tracking you or providing healthcare?
A: The NIH does a lot of medical research. There are many medicare areas that cost our a lot of government money. NIH finds these and works on finding ways to treat them better. Many seriously ill US citizens get a large amount of money from the government through programs like VA benefits, Social Security, Medicaid, Medicare, state-funded programs that includes a large Federal contribution, etc. In this instance, the Federal guys aren't providing anything but medical supervision of my care by an outside distinguished researcher. He checks all the work, and where he has suggestions, he shares them. If there is a new medical success or trial, and I am a good candidate, I may be offered opportunities that aren't available to the public to try, including new drugs and new techniques. Nothing is obligatory. The ten-year survival rate record for MS plus brain cancer has been set by a person who went through this process and is still being monitored by the NIH (and by my doctor.)
Q: Any special successes so far in your medical case?
A: Yes, and my bride Sue deserves credit. The initial plan for me following surgery was 4-6 weeks in a convalescent hospital so I could relearn to walk and talk. Sue started her own recovery plan and had me walking and talking (more slowly but with much control) within three days. That's a big one. A second success was both permission to take appropriate medications when pain became a problem, and avoid the anti-pain medications where I felt functional. By being able to control it myself, I was able to shift out of the pain-killers in about two weeks, having taken only about half the standard set. The radiation therapy seems pretty good, too. It is removing the cancerous tissue quite well thus far.
Q: Any gripes?
Anytime I come up with one, I am reminded how far behind I am in remembering I am being treated beside our nation's Purple Heart earners. I see these kids, 17-22 or so most of them, learning to walk with prosthetic legs or arms or learning the life of a wheelchair-bound veteran. I have no business griping beside these kids. Parking at the hospital has gotten better since I've been going each day (I know where to look for a handicapped space!) I pay no insurance, no co-pays, no drug expenses, and I don't need any at home care beyond Sue and the boys. Gripes? No, I don't think I have any gripes.