It has been about a year since I have posted on the blog. I have been sick and I have tried to put down that experience. It’s a bit long so I have divided the story into 5 chapters. I will publish a chapter a week. So here goes.
It has been a long time since I have written on my blog. I think that my memory has recovered enough that I can put together the past year. Where I cannot remember some of the specifics I will rely on my care giving team, without whom I would not have survived, Linda, my loving and caring wife, my two kids, J.R. and Christina. They were there for me almost every day even though I was not aware of their presences. I will not name all the folks involved because we all make mistakes and because no one can remember who they were, especially me.
I have had COPD for several years and it started getting worse about 5 years ago when I was hospitalized for the 1st time. From that point on every time I went to my Doctors or to the ER I was told, “You have COPD and chronic bronchitis take this antibiotic.” I would go home and would be better for 3 or 4 weeks then it would start again. I can’t breathe enough air even with Oxygen. Every time on follow up visits to my doctors. I would tell them ‘”you give me antibiotics and I get better but you don’ make me well’” This went on for over a year. Each time I went to the ER x-rays were taken yet nothing amiss was found other than COPD. I continued to get worse and on Thanksgiving Day 2016 getting ready for the family feast while trying to move the dining room table so we could all eat together, I broke a leg off the table. The next 2 hours took its toll on me trying to find a table. Off to Walmart to buy a table that after getting it set up only to find that it is too long and much damaged.
Called my son, JR, for help, I need a folding table 4-6 feet long. Any ideas and he said, “I think I have one in the barn.” I then drove 5 miles to his house and returned with a table perfect for the occasion.
By the time the family arrived I was totally wore out and was not a very good host. After dinner I was spent and if I remember correctly I went to bed for a while. Sorry kids but I couldn’t help it.
Over the next few days I did not get better and on the evening of 11/28/16 Linda took me to the ER and was admitted to the hospital. On the third day I was beginning to feel better but that night I crashed and was moved to ICU and they called Linda telling her she needed to be there now. I am told that if it hadn’t been for Linda and Chris holding me in bed I would have been strapped there. I guess that day I was given a CAT scan that showed nothing amiss with my heart and also the COPD. The heart doctors at the hospital said I almost died twice from Cardiac Arrest. The bottom line was that I had sepsis and that was causing all the problems with my heart. I can only guess that the sepsis was caused by the cancer I would soon be diagnosed having. Through all this my back was hurting so bad I could hardly walk by myself. The hospitalist (these are doctors or nurse practitioners who see you every day but rarely two days in arrow) along with the heart doctors decided I was well enough to leave but they thought I should go to a rehab facility for a few days.
I was taken to the rehab at the Franklin United Methodist Community. (FUMC) Now what I learned that night and subsequent days later (April/May) I don’t ever want to go back there again! They had none of my prescription meds and Linda had to go home and return with pain medicine that they gave me and that was the last I saw the nurse. The only aid I saw after that was when at 3:00 am I asked for a cup of coffee. I could not lie down on the bed because of extreme pain but I could set in a chair without pain. So, I spent all night setting up and playing a game on F/B until morning when they brought breakfast that I couldn’t eat. I have never in my life eaten biscuits and gravy. I can say with certainty that from 9:00 pm until 7:00 am except for when I asked for coffee no one came to check on me!
I started, “pardon my French,” raising hell” about leaving and lack of care and meds. I saw the FUMC DR. and told him that I was not being taken care of and could not lie down without severe pain and I needed to get to my own bed NOW! I was released within 2 hours. I guess my 25 years as an Allison supervisor paid off. No one said no. When I got home I ate a bit and went to bed. No pain and I must have stayed awake at least 5 minutes.
Shortly after the early Dec. hospital stay I noticed a swelling on my breast bone where the collar bones connect. Over the next few days the swelling increased and it began to hurt and on Christmas day it hurt so bad that after dinner with my mother at the “Big House” I had the house nurse to take a look and she sent us to the ER. They took x-rays and sent me home saying they had no idea of what was wrong. Put on this pain patch and take these antibiotics.
During the next 2 weeks I had follow-up appointment with my Cardiologist, Pulmonologist and family Doctor. The only good to come out of these appointments was referral to Dr. Robert Daley who ordered a PET scan at St Frances on 12/29/16 and a follow-up on 1/10/17. Dr. Daley showed us the cancer and it was in a lot of places. Dr. Daley ordered a biopsy to determine which of three types of lung cancer I had.
The biopsy was at St. Frances on 1/19/17 with a follow-up with Dr. Daley on 1/23/17. Going to Dr. Daley’s I knew I was just about gone. I hurt even with the Hydrocodone and had no energy and could just barely walk. Dr. Daley explained that I had small cell carcinoma and it was stage 4. I knew right then that without a miracle I would be gone, dead. My miracle happened in the next hour! Dr. Daley said there is hope and he looked at Linda and said, “go get in your car, drive out of the parking lot and turn right onto County line Rd. And go to Emerson Ave. and turn left and go to ST. Frances hospital Cancer Center. Do not stop for any reason until you get to the office of Dr. Nadeem Ikhlaque. He is the best oncologist for small cell carcinoma. Dr. Ikhlaque explained the treatment schedule and what I remember was the results of that treatment were 80% survival at 8 years.
Within ½ an hour I was admitted to Dr. Ikhlaque’s Cancer treatment floor at St. Frances. And after reliving my whole life time medical history and a bite to eat the fun began. I think it was about 10:00 pm that I was taken down to Radiology for them to locate and map the cancer areas; my brain, breast bone, Lung, and 5th lumbar vertebra. The pain from lying on the scan device was so intense I could not lay still. I was yelled at for not laying still and I was in tears because it hurt so badly but I wanted the pain to go away. Finally I was back in my room and got some sleep.
It was early on January, 24, 2017 that the treatment plan was explained. The radiation treatments would begin that morning and continue Monday – Friday for 20 days and the chemo therapy would start that afternoon
And it would be three days of treatment then an injection for immunity then 2 ½ weeks off and then 3 more days of treatment, until six treatments were completed. On March 6 had an appointment with Dr. R. Daley who had an x-ray taken and said the tumors were shrinking; chemo and radiation was working.
For those of you who are blessed with never taking Chemo you have no idea how fortunate you are. For me it was, with everything else going on with me, devastating. I had no energy, no appetite, everything I did eat tasted like s—t and I do know what that taste like but that is another story. When I finally recovered from my last chemo treatment I weighed 140 #. The weight loss had begun in the late and early summer when I weighed 180+.
The chemo treatment was hard on me but Linda was the one being hammered the most along with my daughter and son. So, my son volunteered to baby set me if Linda could get away for a couple of days. Linda put together a plan to stay with her sister Carmen for 3 days. So JR and I started our great adventure which was going well the first day and a half and then thru no fault of his turned bad, but probably saved my life.
The week before the great adventure my left elbow swelled up with a big knot and then the left arm from the elbow to the first knuckles began swelling until it was almost 2 times the normal size. It was 3/20/17 and I fell which scared my son because he didn’t know what to do but he helped me up and into bed. After a few minutes I asked him to call an ambulance to take me to St. Frances. The ambulance attendants and the Franklin Firemen were really great. I think they took pity on this old and dying man. When we got there the hospital was full and I got one of the last ER rooms.
The ER surgeon came and examined my arm and told Linda he needed to lance the elbow and that he would be back. A half hour later he arrived with his instruments and numbed the elbow and proceeded to open and drain the elbow. He wouldn’t let me watch but Linda said he got lots of: “stuff” to drain from the elbow.
I was in the emergency room for almost 18 hours before getting a room. The room assigned was in the bone marrow transplant unit, the only vacant room at St. Francis. Dr. Ikhlaque came to see me and said that as soon as he had a room available on his floor he would have me moved. This move happened the next day but for the next 36 hours whether coming or going from my room my family or any visitor was required to wear masks and gloves when not in my room. They were very happy when they moved me to the cancer floor.
After being move to the cancer floor the stream of doctors started. They were looking at my left arm and elbow and they also trying to figure out why I was falling “a lot”. Finally it was decided to operate on my arm and also try to determine what antibiotic was needed to kill the bacteria causing the infection. They opened up my arm from the elbow and drained considerable infection from the arm, so I was told, and packed the incision so it would heal from the inside out. The next day the laboratory said that the antibiotic to stop the infection was CIPRO. The lab determined that my infection was MRSA.
Then started twice a day IV’s of Bactrim and vancomycin for a week. It worked and I was sent home 3/27/17 with CIPRO pills that I took for another week. Now starts a part of my life I do not remember and the information I relate is mostly from Linda with assistance from daughter Christina and son JR.