My trip down cancer Highway Part I

I started having a pain in my back in in mid to late Oct. 2013 it was under my right shoulder blade and felt about the size of a quarter the pain would come and go. I thought it was from helping my sister move furniture and it would go away. During November it seemed to get worse and last longer, by Thanksgiving it was a constant pain. I tried putting cold and heat on it; I also massaged the spot and tried taking Advil and or Ibuprofen all to no avail. On Thanksgiving day I tried Aleve that also did not help, I also tried smoking pot and that did relieve the pain but got me all messed in the head so it may have been that it just got my mind off it for the day.

In early Dec the pain began to spread all across my shoulders, around the 15th of Dec I went to a chiropractor thinking it was a pinched nerve .He popped my back and neck and that at first seem to ease some of the pain, however a few days later the pain was again constant and very severe and nothing helped. Around Dec 18th I couldn't get out bed as when I tried to pull myself up my arms felt like they were ripping from the shoulder sockets. I lay in bed for 2 days then on Dec 21 I forced myself up because I started vomiting and diarrhea. Over the next 3 days I laid on the couch and messed myself several time as I was in severe pain across my shoulder and my chest and back ( at some point during all this I started night sweats from my waist up ,my leg would be cold but my upper body and head sweating)
On the night of Dec 24th it was so bad I prayed as hard as I could and asked god to ease the pain so I could shower and clean up and I would go to the hospital. (I was not the type to go to Drs. or the hospital as I had an experience at around age 5 where I was tied to a crib and told to just wet the bed this was at Chelsea naval hospital. I ended up wetting the bed till age 14 and on occasion after that till about age 18) about 4 in the morning the pain went away. Over the next 3 hrs. I was able to muster the strength to shower, shave, get dressed, having done that I sat down for about 15 minutes and the pain came back. I got on my motor scooter and drove to west Jefferson hospital about a mile and a half away.

Upon my arrival they immediately did an EKG and started a glisten IV they also did a blood test. About an hour later the ER Dr. told me my blood work was a mess and he thought it was leukemia but was going to admit me and order a bone marrow test to confirm it. I was admitted and given 2 blood transfusions the next day I was given a 3rd blood transfusion and a bag of platelets and a bag of potassium. I was then sent for a bone marrow test. Over the next 2 days while awaiting the test results I was drugged with dilator and slept most of the time. on sat Dec 28th the oncologist Dr. told me the results were that I had bone marrow cancer called CML( Chronic Myeloid leukemia) The Dr. explained that I was in a late stage and had to be put on a drug called Gleevec immediately or I would not live to March of 2014, when I would be eligible for Medicare. He further told me that Gleevec even at this late stage would control or cure this leukemia but the cost for the medicine was about $8000.00 a month.

I had no insurance so I was stabiled and discharged on Dec. 31 with a letter of instruction to go to LSU university hospital for free care. The discharged letter and paperwork explained my records were already sent to university Hospital and I was expected, I should go there on Jan 2nd.

I went to university hospital on Jan 2nd letter in hand and discovered that the free care clinic had closed down 2mts prior it was now an outpatient clinic. I spoke with a nurse and showed her the letter she told me to go to the emergency room and they would help me. Letter in hand I went to the ER and was seen by a Dr. whom while angry at reading the letter said she would help me. after several hours she told me I would be accepted into their free care program gave me a 14 day prescription for Gleevec and a script for Percocet's, told me to start the Gleevec and scheduled me to see a Dr.in the oncology dept. for Jan 7th.

I went to Wal-Mart to fill the script and the cost was $3600.00 for 28 pills. I called the Dr. whom gave me the script and she told me go to the university pharmacy the next day and they would fill it .I did that and the pharmacy refused me because I did not have a Louisiana state Id or Driver license as well as a free care card. They did put me in touch with a social worker in the oncology dept. whom handles all Gleevec patients. The social worker told me they would give me the Gleevec at my appointment on the 7th.

I met with Dr. Ruiz of the LSU oncology dept. on Jan 7th his first words to me after reviewing the records from west Jefferson hospital were there was something wrong in the diagnoses. He ordered blood test and told me go home for now and he would call me after he received my blood test results. 2 hrs. Later Dr. Ruiz called and told me after reviewing my blood test he wanted me hospitalized immediately and that I should go to the to the ER as soon as possible.

On Jan 8th Dr. Ruiz came to my hospital room and did another bone marrow test explaining to me that the 1st test did not show that I had a Philadelphia chromosome and therefore I could not have CML so this time they were going to do further testing of my bone marrow. (He showed me the bone marrow he had extracted from my hip, smiling and quite proud of the size of the piece he had gotten out) I was discharge from the Hospital on Jan 11th and given a Jan 14th appointment with Dr. Ruiz. During the full period of time from Jan second to Jan 14 I was in moderate to severe pain in my shoulders arm and sternum taking Percocet as needed.

On Jan 14th I met with Dr. Ruiz and the head of the oncology dept. a Dr. BOGART. (I had heard stories about Dr. Bogart in the waiting room both on the 7th and 14th. stories were he was a cold hearted straight talking bastard known to scream at patients in the waiting room and the ER). Dr. Bogart explained that I had MDS (myloidsplastic syndrome) not CML. He explained I had a year to live at the outside possibly less depending on my cryogenic results, that I could receive comfort care, which was blood transfusions and pain medicine as needed or I could try 6 months of chemo which only helped 1 out of 4 patients .Dr. Bogart further explained that my body was producing baby or immature red blood cell at such a fast pace it was crowding out the mature RBC. That at my age I should have about 30 % bone marrow but my bones were packed solid. He told me to think about what I wanted to do for a few days before deciding. He then just walked out of the room. My head was spinning I couldn't think I turned to Dr. Ruiz and asked what do I do he said go home I'll call you next week. I left his office stunned to the core. The elevators are less than 50 feet from Dr. Ruiz office door as I was walking to toward them I heard Dr. Ruiz call for the next patient I turned and we locked eyes, he turned away. At that moment I never felt so alone in my life it was as if I was just a piece of meat tossed to the dogs.

Over the next 3 days I talked with my brothers and sister about what I should do. All of them thought I should try the chemo. On Friday the 17th I talked with my only biological son it was a very emotional conversation we both struggled to keep composed .he wanted me to try the chemo too. (I have 5 children 4 boys and a girl, 2 of my sons have died one as an infant and one at age 29 from ARD's, my other 2 children a daughter and a son I raised from the ages of 4 and 5 when I married their mother, I adopted them at ages 11 and 12. My daughter has had MS since age 28. When I got divorced from their mother after 27 years of marriage they turned their back on me and we haven¡¯t spoken but a few time in 12 years. This just proves blood is thicker than water. I have 2 grandchildren from my adopted son that I have only seen twice since the divorce; it¡¯s all so sad and hurts greatly. I take responsibility for not trying harder to have a relationship with them after the divorce.)

After speaking with my son I called Dr. Ruiz and told him I would like to try the chemo. He said he would set it up and the Chemo infusion unit would contact me Monday Jan 20th... I did not hear from the chemo unit. As the days past my pain got worst it felt like my arms were being ripped from the sockets and my back pain was from the top to the bottom I was getting shortness of breath and was very tired all the time on Friday I called Dr. Ruiz he told me they were trying to get a loan of the type of chemo I needed (Dacogen) from another hospital. He also had me come in and get more Percocet's. 20 minutes after I talked to him the chemo unit called and set an appointment for Feb 3rd.
Over the next 8 days I was taking so many Percocet's for the pain I became constipated and believe me I learn the hard way what shitting a brick really felt like. By the time Feb. 3rd came I was in such severe pain and so fatigued I had to rest after walking about 50 feet. When I arrived at the chemo unit that Monday morning for my first treatment I barely made it. My blood was tested and I received chemo, I left there in the same shape I arrived. Later that evening the pain started to ease. On Tuesday morning I arrived for my second treatment still with shortness of breath and fatigued but not in as much pain .by Wednesday treatment my pain was gone and I was breathing better but still quite tired. For Thursday treatment I had no pain and was breathing petty good fatigue was just an overall tiredness. On arrival for Fridays treatment I felt good had the treatment and went home. I was happy that the chemo seemed to help me so much. On Friday while talking to a nurse another patient overheard us and he said to me take it one day at a time guy and enjoy the good days .I would soon know exactly what he meant.
On Sat I expected to be vomiting and shitting from the chemo but instead the server pain returned with a vengeance. I was eating Percocet's and they didn't help at all, my arms shoulder ribs back and hips felt like my bones were being crushed. Sunday I started smoking Marijuana with the Percocet¡¯s while it made me high as a kite it helped with the pain. sometime Sunday night stoned out of my mind I fell asleep and when I woke Monday morning the pain was bearable as I attempted to get up I was totally exhausted and ended up just lying in bed most of the day, the pain went away sometime in the afternoon. On Tuesday 9th of Feb. I was able to get out of bed but had shortness of breath and felt very tired over the next 15 days the tiredness turned to extreme fatigue and my breathing got so bad I could not walk more than 10 or 15 feet without resting, my stools had also turned black so I knew that meant internal bleeding. Around the 21st I stopped eating as it was too exhausting to try. On Monday the 24th I needed to do something or I wasn't going to make it. I called Dr. Ruiz cell phone and it went to his voice mail which was full. I tried calling over and over but he never answered. Not knowing what else to do I called the appointment desk at the oncology clinic after explaining to the nurse about Dr. Ruiz phone and my condition she said she would try to reach his office. An hour later Dr. Ruiz office called me and I explained my condition they said they would try to reach the doctor but I should get to the ER right away.

I called a cab and went to university hospital ER the cab driver helped me inside. The waiting room nurse saw me and got me a wheel chair I explained what was happening and she took me right away for an EKG she said I was extremely pale. After the EKG they drew blood when they got the results they put a mask on me and moved me to a private room and put me on reverse Isolation my blood count was 5/ crits19 they attempted 6 time with 6 different DR¡¯s and nurse to start an IV but my veins would collapse .They then explained that they had to get blood in me so they were going to put a large IV in my nexk as we were reaching a critical situation. A Dr. put in the IV and they started a transfusion, at the same time they put a second IV into my inner thigh to reach my main artery and they injected me with dilator. (Later I would see this IV needle was over a foot long)

I was then taken for x rays and a cat scan before being admitted and moved to a private room where I was given 2 more blood transfusions and 2 infusions of platelets. The next day they scoped my stomach and colon to try and locate the source of the bleeding. Turned out the bleeding was in my stomach were the veins come together known as AVN. they were not able to cauterize the veins as my platelets were and are still too low. I was released from the hospital on Friday Feb 28th and I start my second round of 5 days of chemo on March 3rd. This time the Dr. told me they will monitor my blood more closely.