This is my story about living with Multiple Myeloma. It is a story I have been needing to put down for quite some time now, but was not ready yet as I have been so overwhelmed with it all. I have read many blogs on the diagnosis and treatment for MM, yet what I have not really seen is the emotional impact it has made on the people diagnosed with this difficult and painful cancer. After 6 months of living with MM and still not knowing where the future will lead, I have found that the emotional toll is heavier than many of the other symptoms, and maybe by sharing my journey I will be able to help others on theirs. Here is a little overview of how I found out I had MM.
In May of 2012 I moved to Tempe AZ from Texas to start esthetics's school (skin care, facials, etc).
I have had back problems for years. As a massage therapist I have attributed my problems to my job. I have friends who I exchange treatments with and so I received plenty of massages, acupuncture and chiropractic adjustments. However, by the time I started school the pain in my back had become so severe that it was really interfering with my life. Big suitcases had to be carried to school every day, and I was unable to do so. With the help of friends and fellow students I was able to continue school, but it became increasingly more difficult. I went to see several doctors and ended up in the ER a couple of times, but other than diagnosing me with severe anemia they could not find anything wrong. At my first ER visit I was told by the doctor that he would only do an x-ray, since cat scans were so expensive and insurance agencies frowned at their "overuse". As I found out later, the tumors they found on my spine were only able to be detected by cat scans, something that could have allowed my treatment to have started months earlier, never mind avoiding months of agony. I ended up with a bad lung infection that would not go away, but x-rays showed my lungs were clear, so I was sent home again.
At the beginning of November, on a Saturday morning, I decided enough was enough. Somehow I had made it through school. The only thing left to do were my clinical hours, and I was in no shape anymore to be with clients. Sometimes my instructors found me on the massage table, hardly able to move and completely exhausted. Because of MM I had severe anemia and I was completely worn out. I could hardly climb a flight of stairs anymore. On that Saturday morning I dropped my daughter off with friends and went to the Emergency Room. I decided I was not leaving until they had given me an answer. They took cat scans of my chest and drew more blood. My friend and I were sitting around, I had been given a nice dose of morphine, so was finally mostly out of pain, something that had not been the case for many months. When the doctor came in after about an hour he looked at me and before he even sat down told me I was anemic and had cancer. I looked at him and asked him if he was kidding. Surely a doctor does not come in like that and announce a cancer diagnosis. Unfortunately that was the only way this doctor knew how to do it. He looked at me and said in a serious tone that he would not joke about something like that. He told me I needed to be admitted immediately, that I had 3 tumors on my spine and that one of them was so large it had gone into my spinal cord and might have me paralyzed at any moment. I later found out that I was a ticking time bomb and that I was very lucky not to have been paralyzed.
Things after that became quite blurry. Needless to say I completely fell apart. Here I was, a 44 year old woman, mother of a 7 year old girl, wife of a husband who lived in another state. I told the doctor I could not go to the hospital as I had nobody to take care of my daughter. I needed to call my husband and he had to fly in to take care of us. Making that phone call was the hardest one I have made in my life. My husband was enjoying a trip in the hill country with some friends, mountain biking, and I had to tell him to come home to take care of his wife who just found out she had cancer. I have seen movies like this, I have read about it, yet surely that was never going to be me. I was a very health conscious person. I had tried to do all the right things. I was not overweight, I did not eat fast food, I exercised, I had even been vegetarian for 7 years. How could this happen to me.
The doctor reluctantly send me home, after having me sign all kinds of paperwork stating if I chose to leave I did so at my own risk and could risk paralysis or even death. I promised to go to my doctor first thing on Monday and check into the hospital. This is what we did when my husband arrived. We went to the hospital and for the next 5 day every possible test was done on me. Several different Cat scans, with different dyes pumped into my veins, a two and a half hour MRI with sound so loud that I could not have gone through it without the significant amount of drugs they gave me. I received a blood transfusion and was on morphine around the clock. I can’t really remember much of that time, only that I was happy to have my husband there with me and friends visiting and caring about me.
People’s good thoughts and prayers became very important to me. My friend kept people updated through face book and I felt lots of love coming my way. Reality of what was going on hit more when I got home and we were beginning to talk treatment. Because of where the tumor was at, they were afraid to operate out of fear of paralyzing me, so radiation was the immediate solution. The diagnosis of my cancer, Multiple Myeloma, is a blood cancer that affects platelets. Looking back it is amazing that no doctor had come up with this diagnosis based on my symptoms. Symptoms of MM include: bone Pain, often in the spine and ribs, both of which I suffered from the most, anemia, weight loss, fatigue, broken bones, infections (hence my lung infection that would not go away). I don’t know why it took doctors so long to come up with the diagnosis. It certainly could have prevented a lot of pain and discomfort, and allowed the MM to be kept from spreading as much as it had. One thing I learned is to be more assertive with doctors. If a person feels something is not quite right go and insist on tests to get it checked. Three years prior I had told my gynecologist that I felt my bones were weak and I wanted it checked. He simply laughed it off, told me I was too young. Had he known that bone pain and anemia (which I already had) were part of MM, he might have saved me this very tough road I find myself on today.
One thing I need to state here that, though I knew I was going to need conventional treatment due to the progression of my condition, I was scared to death of Chemotherapy. That in itself felt like a death sentence. For years I had read and studied everything that stated that chemotherapy was not good for the body and that the results were severely lacking. I had gone to a naturopathic school and my whole believe was of healing the body through herbs, diet, and rightful thinking, as well as strengthening the immune system. Chemotherapy seemed to be doing the precise opposite. I had often stated that if I ever had cancer, I would never take the route of chemotherapy or radiation. A very dear friend of mine was a naturopath and he suggested I take the conventional route because my cancer was so far advanced. I did not have the energy to try the natural route. I was taking many medications for my pain and my anxiety and simply did not feel strong enough. I knew I had to change my mind about the chemotherapy in order for it to work for me, but my education and even my childhood very much got in the way of that.
I had been raised by a Christian Science mother who very much believed that disease did not exist and was simply the result of wrong thinking. That influence on me, made me believe that if we were sick it was something we created through our “wrong” thinking, and so it was 100 percent our responsibility to turn it around. With my condition and physical weakness this was a lot to take on. Needless to say that my first two rounds of chemotherapy went horrible. I lost a lot of weight, was nauseous all the time and battling fevers on a daily basis. My body seemed to be rejection the medicine completely and there were plenty of times I did not want to be on this earth any more. The journey simply seemed to be more than I could handle. Though prayer was coming from all over the place, my own mind was mostly filled with Fear and Anxiety. After my first two cycles the doctor said I probably had a reaction to Revlimid and put me on something else. By this time I had also decided to change my way of thinking about chemo, in order for it to be able to help me. My numbers were coming down very slow and the side effects were certainly affecting my quality of life. Since the doctor changed my regimen I feel much better and my numbers have been steadily coming down. Not as fast as my doctor would like to see, but at least it is going into the right direction. I have read many people who only need about 4 cycles, so far it looks like I will have to do at least 8. Well, this is a short overview of where I find myself today 6 months after finding out I have cancer. Next time I would like to talk more about what this has been doing to me emotionally, the ups and downs and how I try to deal with them. Living with cancer is a challenge to say the least, but I do believe it is possible to still enjoy life. This might mean changing your perspective, taking medicine, talking to someone or writing down your feelings. What ever it is you need to do to keep your Peace it is worth doing. I am still very much in the midst of trying to figure out what works for me, as many of my days and nights are filled with anxiety. I would Love and Appreciate any responses to help me get past the fear part and into the healing and living part of this disease.
Thank you for taking the time to read my story. Sharing this feels healing to me, so it must be right....