First off I want to say that with out medical advancements I would be dead so I respect what they can do. When they work it can mean miracles. But what about when they don't work and what they can do to people and what they don't tell you.
To understand my thoughts you have to know my story, it all started Christmas 6 years ago I was 44 years old.Christmas has always been a special time for me and I always decorate in a big way. I had been noticing that it was harder for me to go up and down the stairs, I was getting winded and going to the grocery store was exhausting. I thought that I was just out of shape and had decided that after the holidays I was going to get serious. I needed to get my Jane Fonda tapes out, she used to be my nemesis and it was time to take her on again. However, on this day as I added the final touches to my decorations I knelt down to put the skirt on my tree. When I did this a horrendous pain shot through my body stemming from my knees. I had never experienced a pain like this before it locked me in my spot I could not move. I don't remember screaming but I guess I did because as I pushed myself over on my side my husband came running in from another part of the house. I could not get up, when I tried the pain took over again. In these situations others really can't help you, I had to figure out how to get up myself. I went to the Doctor and was told there was nothing wrong with me, it was all imaginary. Resigned that this was just part of getting old I started to use pillows to kneel on when I had to get down to do anything on the floor. I was feeling pretty tired all the time and even with repeated trips to the Doctor, their diagnosis was the same so I decided not to go back. By New Years I could not get out of bed and I told my husband I was dying, I needed to find someone that believed me. We went to a local free clinic, the only other choice in town to see a General Practitioner, but with free clinics often there is one doctor and many Nurse Practitioners or Physician Assistants this is how it was with this place. I went resigned that I probably would not get the help I needed. By this time I was getting worse daily but as I said I didn't expect much when I saw a young P.A. named Kelly, she listened to me, drew some blood and asked me to come back the next day. I left with heavy heart knowing that this was all that she would do. The next day she did the same thing. By the third day my left side of my body was not working, it was agony to get out of bed and to get to the office, then they left me in the lobby for more then 3 hours. Finally I told a young man at the counter that if they were not going to see me to let me go home and die because I could not do this anymore and there was no doubt in my mind that I would not make it through the night. Sometimes you just know.
They had to get me a wheel chair because as I sat waiting in the lobby I became unable to get up and walk. When Kelly came in that time she said she had me come back each day to check the white cell count in my blood and that it had been dropping drastically each day, she said that is why I was so tired. I had been anemic for years but she didn't think that had anything to do with this, she thought I had lupus and that it wasn't life threatening. Sometimes God puts angels in our lives when we need them most and that is how I see Kelly. She told me she had sat up all night researching my symptoms and she wanted me to go to Omaha to a particular hospital. That they were waiting for me and not to go home to pack a bag because I was only going to be there overnight this was only for tests. As we drove the two hours to get there, we had no idea what lay ahead or that I would not see our home again for two months.
The P.A. and these doctors saved my life.When I arrived they ran some tests including another blood test, a bone marrow test (this is when they make a small cut on your hip and remove a small part of your bone to the marrow to see what was going on) and they did a spinal (with a spinal they inserted a needle into my spine to get some of the fluids) both of these tests are terribly painful and with a body already wracked with pain they were excruciating. The results, I had Leukemia...cancer oh my dear God. The big C word. I had a little better then 25% chance of survival that first day of treatment but they were going to treat me aggressively. Thus began the odyssey of my lifetime. Two months in the hospital accrued a bill exceeding 700 thousand dollars and that was only for the hospital this did not include all the specialists, doctors, technicians involved in my stay. One shot I received cost over 15 thousand dollars for less then 2 mm of fluid and I had to have it daily. I am not sure anymore what that shot did but it was cutting edge in fighting cancer.
My immune system was nil so if I caught a cold it could kill me. I could not shave my legs, take a shower, nor brush my teeth in case of cutting myself and introducing germs to my system, I was one huge mess. I had to go through many rounds of chemotherapy, there were blood transfusions, platelet transfusions, shots, blood draws,bone marrow and spinal tests. Often these treatments were daily. The first round ruined my liver and I was jaundiced, I lost my hair so here I was a great big lemon colored bald lady even my eyes were yellow. Plus I could not get out of a chair if I sat down. I was stuck in a clean room cut off from society. I could not eat, nor was I hungry. All I wanted to do was watch old movies listen to my music and sleep.
The drugs they give you are carcinogens they are designed to kill the cancer cells but in the process they take the patient very close to death. Ultimately they saved my life, so I am not complaining...exactly.
My issue is that doctors don't tell you what is going to happen to you or what the drugs are and what they do and if you are not savvy enough to know the right questions they won't offer information. My doctors all asked if I had questions but I never knew what to ask. When I had side effects and asked about them they would tell me that they had never heard of it before.That it must be me... this is my complaint, they try to explain everything away with blaming you making you feel and sometimes saying that you are making it all up. I began to not trust my doctors, I personally despise doctors well, most of them anyway but this distaste goes way back to pre-cancer so it is really embedded.
When they started me on steroids as part of the therapy not only would they not tell me why I had to take them, they denied my rapid weight gain as a side effect of them. As I threw up everything I ate, I gained upwards of 25 pounds a month. I also developed what I call monkey muscles on my arms and legs. Pain has been my daily companion since that December day six years ago, again they said there was no reason for this and it must be me. Then when I had an episode so horrible I went to the Emergency room, I was told there was nothing wrong with me, but the pain was excruciating. The entire right side of my body hurt it was like they cut me in half and set the right side on fire, but this was all in my head. They gave me morphine and sent me home with instructions to call my doctors tomorrow. The morphine did not even make a dent in the pain, my cancer doctors were not interested and told me I needed to see a G.P. on Monday, by the following day~ Saturday fine painful itchy rash like sores covered the right side of my body from my hip down and the pain was incredibly worse. How could I make it to Monday? I demanded someone help me so the Oncologist on call sent me back to the E.R. I had shingles. Shingles? wasn't that an old person ailment? How in the world did I get this? When I went in this time covered in sores they treated me, they gave me more morphine, a fentanyl patch, oxycodone and lyrica then they sent me home. I was pretty sedated and did not have anymore pain, but I was also pretty much comatose. Again I was not given information on these medications nor was I warned about possible side effects but three days into this regiment I looked at my husband and calmly saw myself hacking him to pieces, the vision I saw was pretty vivid. I also saw myself doing the same thing to my children, it was a like a gory movie playing in my brain. I wanted to do this, it was surreal, I calmly told my husband that I thought we needed to call the doctor because I wanted to kill everyone in the family. He did not react he just got the phone and I called, they told me to stop taking all of the medications immediately. Again they did not warn me of the effects of stopping these lethal medications cold turkey, but when I told my husband he knew. Richard told me that I was going to get pretty sick and have withdrawals but it was going to be okay because he was going to be there with me. He would not leave my side then I then went into one of the hardest weeks of my life. I had no clue that you could become so physically dependent on a medication so quickly. I had hallucinations, cold sweats, vomiting and the shakes for a week. A week of this for only 3 days on them, wow. They never explained what did it or why I had those thoughts and I was wrong when I thought it was the combination. I also came to the realization that they knew what was going to happen to me when I stopped taking these drugs. It also explained something that happened to me during my hospital stay. You see one night they came and gave me a horse sized pill for "anxiety" but I wasn't anxious. They demanded I take it, my nurse was a pretty black lady with long flowing braids that had beads in them. She had a musical voice with a Jamaican accent. That night I saw her face floating over me going in circles as her voice said things I didn't understand. I was convinced she was a Voo Doo Queen and she was putting hexes on me. I refused to let her near me after that. I then was considered a difficult patient. But had they told me that what they were doing was removing me from the pain killers and this would cause me to withdrawal I would have been okay because I would have known it was all a part of it. When the same thing happen to me the second time it became very clear to me and I sort of feel bad about my treatment to this nurse,I wish I could say sorry to the Voo Doo Queen but what good would it do now?
I spent a year as a shut in, laying in bed only managing to make it to the bathroom with very few trips down the stairs. I could not negotiate them with out help. So After finishing my chemo I settled into my now pain ridden life and started to deal with it. I could not drive, could not walk, I wasn't enjoying my life at all not even a fraction of what I did before could be done. I found myself on Facebook in the land of make believe and playing all those social games because it was the only social interaction I could handle. This went on for some time. Then last year again at Christmas I told my husband something was wrong and I was dying, I told him that I wanted to have an extra nice Christmas because it would be my last with the family, I knew I was not going to make it to my birthday in April. My husband went searching for someone to help me and his name is Doctor Robert Adams of Norfolk Nebraska , he is a neurologist and another of those angels I spoke of.
While my story here is condensed because I can not possibly tell you of every incident in this illness and life.
I told you all this for this next part.
When I went to see Dr. Adams, he listened to me, he ran some tests and then he said something remarkable to me. I was in the condition I was in due to the chemo, cancer and drugs I had been given. That often these things have effects that last for years. He just contradicted every single doctor I had seen since contracting Leukemia. He also made me feel for the first time in a long time that it was not my fault and it was not in my head. I told him I did not trust doctors and he said it was okay he was going to fix me. He said that even though I was in pretty bad shape he wanted me to decide and plan what I was going to be doing in 10 years because I was going to be here to enjoy it. How in the world did he know I thought I was dying?
He explained that the withdrawals was due to the morphine and fentanyl also that the thoughts of killing my family was the lyrica and not the combination of the drugs. He assured me that my weight gain which is a story in itself was indeed due to the steroids but he was going to help me and he has. In the year since first seeing Dr. Adams, I have dropped 65 pounds, I can, walk, drive, go grocery shopping and I am planning on a vegetable garden for the first time in years. Instead of playing social games I have started my blog with the hopes that one day I can go back to school and get back to my life.
I am telling you all this because when you are taking medications it is important to know what you are taking, why you are taking it and what the side effects are. If you have a doctor that won't tell you then find one that will. They are hard to find but they are out there. I thank Dr. Adams from the bottom of my heart. He has given me hope and given me wings to fly.