blesseington's Journey with Multiple Myeloma

The 1st diagnosis was blunt and insensitive. Then the doctor said she was wrong and that I did not have multiple myeloma. When I got into see a different doctor, he asked me if I had been referred to a hemotologist. I was in complete denial by then and it took my oncologist quite a while to convince me I had multilple myeloma.

The transplant took place right after I went into remission, so I didn't have much time to experience feeling well. The transplanf totally wipes you out and you loose your hair and just feel awful. Lots of diarrhea in the hospital and nausea and no appetite. They tell you that they are going to give you a "massive" dose of chemo and then rescue you the next day. Lovely visual. Of course before the transplant you have to gather stem cells. This procdure is intense by itself. It causes bone pain and fever. I was lucky enough to get all the stem cells needed on the first attempt. I was also lucky to be able to use my own stem cells. For a while thy thought I would need a donor and my family was tested. My brother is my perfect match if ever needed.

The first chemo drug was oral and supported with steroids. The drugs did not work. The steroids made me rage and I was working. Never could sleep and had foggy brain. The second drug was IV and a port was placed. I was told the port placement was standard procedure and not a big deal. The doctor said this is "our bread and butter", we do them all the time and it is simple. NOT true. I was so sick afterward, I could not get out of bed for three days due to nausea and dizziness and pain. The doc said there was a bleed so the port wasn't even usable for a month. The good new is the new chemo worked and quickly. As soon as the MM went into remission they did the bone marrow transplant.

The side effect from all of the interventions are many. The recovery time for the transplant is predicted to be one year. It just wipes you out. My side effects were minimal compared to many. Never had to be re-hospitalized due to infection or low blood count. However, I was very impared in my lifestyle. I couldn't do what I use to do and felt I would never have any quality of life that I could enjoy again. Part of the exhaustion was due to the fact that I had to go back to work as soon as possible, which was about 4 months post transplant. It took two years until I felt truly well and alive again. The work ended just about one year post transplant. Exercise has been of great benefit to me. I had been fairly active when young but the transplant left me so affected that exercise caused too much exhaustion and bone pain. That did go away thank God!

Of course the first celebration is when the chemo worked and I started to feel better. Never knew how sick I was until I started to feel well again. Now, I am grateful for everyday. I see life differently. I live in the moment and have a bucket list! And I work on the list continuously. Some days I feel off but overall I am happy and grateful.

The only true decision I had to make was if I wanted to continue to live. When I say live, I mean to meaninfully continue to participate in life. If I didn't make that decision, I don't think things would have gotten to this point. I still have to do chemo but the doctor works with me to give me breaks so I can have no side effects for a period of time. And the exercise has dramatically improved my health. It just took longer that expected to be able to exercise again at a level where I am gaining strength and muscle tone. Adjusting to life as retired and with chronic illness is major. Everything is soo.. not what I expected my life to be. But I can truly say that I am happy and grateful for all that has happened. There is a shift in values and perspective that cancer gives you. It is a gift if you choose to see it that way.