I’m not sure when I was moved to rehab, and I’m not sure how long I was there until my memory started to return, but it seems like the last two weeks I have memory of most of what happened.
I know I was not a good patient and I apologize to those I offended, but I felt like a prisoner.
I was not allowed out of bed without someone to put a belt on me and escort me wherever I needed to go, even with a walker.
I could not leave the room for any reason without a “guard.” Even with the precautions, I fell at least two times while in rehab. During the last fall, I cracked my head pretty good and they brought the rehab doctor to see me. Good thing I didn’t have a hematoma.
The only thing I could do without being chastised was count the tiles on the ceiling. Don’t know how many times I counted them, but after I arrived at the total I couldn’t remember the number, and, so, I had to start over.
The food at the big house is not the best in the world, but it’s tolerable. The only item on the menu I really ate was tomato soup and the fruit cup. I did try to eat other things, but chemo pretty much killed my appetite and taste buds. I continued to lose weight despite daily lectures from my wife and daughter to eat more.
Physical therapy was a pain.
I needed physical therapy! I needed to walk again. My left leg did not want to work properly and that needed urgent rehab. I did not need to put pegs in holes or find little doodads in a bowl of rice or throw bean bags in a box. I needed to walk! Sometimes I snuck in extra PT of my own. Like standing for extended periods by the bed after I learned how to silence the escape alarm; going to the bathroom without telling anyone.
And, then there was the weekend therapist. He was great, a Jordanian immigrant who with his brother has a used car lot in Franklin. He understood the need for me to walk and that is all we did on his watch. He is a super person!
Toward the end of May, I was becoming almost paranoid about being a prisoner. I was interviewed twice by a psychiatrist and am sure that was ordered by the staff.
I was not a happy camper. I wanted to go home!
On May 24, I kind of threw a fit in PT and so the next day, Thursday, a meeting was called by social services.
Linda and I were there along with 2 FUMC employees. After a while, they agreed I would be better off at home and they would do the paperwork the following Monday. At this point the old Allison manager came out and I may have intimated them a bit. I told them if you worked for me and I wanted something done today and you told me I can’t it will be next week. I would replace you instantly and replace you with someone who could do what I wanted. I went home the next morning.
Of the cancer treatment I received, the chemo infusions totally disrupted my body and how it is supposed to work. The radiation causes burns. My right ear was burned so bad it did not heal until mid-July. About the second week of May it became obvious I was stone deaf. If you didn’t talk very loudly into my left ear I had no idea of what you said. An appointment was made at Advanced Audiology just up the street from the big house. Dr. Ashley Watkins gave me a hearing test that confirmed I was stone deaf, but it was just volume related and with a hearing aid I would be able to hear. Because my right ear was still healing from the burns we just bought one hearing aid. $2,200 a week later I could hear, not perfect but I could hear. If you have hearing aids you know to take them out at bed time and I think most people put them on the night stand at bed side. I do that and was doing that at the rehab but on the morning of my release it, the hearing aid, was gone, $2,200 gone. We searched the room at least three times and it could not be found.
The response from the rehab folks was that they were not responsible for the loss. That was my responsibility. So I come home stone deaf and started my recovery.
I’m not sure who started the St. Frances Home Care folks but they were everywhere and they were great! Occupational Therapist, Physical Therapist, home Nurses, and home care. Most came twice a week and were absolutely great getting me started on my recovery. After 2 weeks the OT guy, Jeff, said he was not needed any more. Just keep doing the 5 exercises twice a day. The nurses and there was more than one, came every week to check my vitals and to make sure I was making progress. The home care lady came twice a week to help me take a shower. And then there was Miranda, the PT girl whose 1st question was, “what do you want from me.” My reply was simply, I want to walk and Miranda said, “I can do that.” So for twice a week for 6 weeks Miranda and I walked and did exercise to help me walk. She did a great job and I am now walking with a cane and carrying my oxygen tank. I work every day to increase my endurance and under doctors orders I go without oxygen for a good bit of the day and evenings.
It has been a long journey that is still not over. I feel better and stronger every day. I have I guess, reached a plateau on my weight, I now weigh166# an increase of 25# from when I left the big house. Linda is a great care giver. I will see Dr. Ikhlaque in about 6 weeks for another scan to see what the dormant cancer is doing. Hopefully it is still asleep.
As I wind down telling my story Linda and I talked about the past year. I remarked that I occasionally have a remembrance flash, remembering something from the period of no memory. We talked about when it all really started. She shared that some of my issues started at the time I discovered there was something wrong with my nose so I waited three weeks to get in to see Dr. Hollenkamp, ENT and he said those polyps are pretty bad and need to come out. Surgery was done on 3/3/16 and my nose was stuffed full so I can’t breathe through my nose 27 days until the follow-up appointment. On 3/30/16 early morning the packing was removed and I could breathe through my nose. We left soon after and drove to Just west of St. Louis, MO. to the Purina Farms where I was scheduled to judge Miniature Schnauzers the next day something I had wanted to do for a long time. I managed to do the judging assignment but my COPD was getting worse by the minute. We drove home that afternoon and that evening I was admitted to the hospital. Five days later and feeling better I go home. Oct. 10th I am back in the hospital with pneumonia. They know that because of the x-rays taken. Every time I’m in the hospital they take x-rays and so over the past few years there have been at least 10 x-rays and nothing showed up about my cancer. I’ve already said that in Dec. they took a CT scan and again failed to see the cancer. We all must trust our Drs. to make the best decisions but in my case I think they just failed.
All during the summer Linda says I started to change. She says I became emotional, depressed, forgetful, and complained about not being able to concentrate. Looking back I understand what she saw in me. I was on the downhill slide that I attribute to the cancer in my brain among other places.
My cancer is now after all the treatments dormant. According to Dr. Ikhlaque It will never go away so every three months I guess we will have a scan to make sure it is still dormant. I am not fully recovered and may never be but I feel like I am getting better every day. I am finally back among the living!