I was a nursing staff employee at a nursing home in Maryland. I was not feeling well, and I went to the doctor, explaining that I was having pain in my chest and back. I was given ibuprofen 800 mg and sent home, back to work, lifting and working a heavy job. I was in a lot of pain, not knowing I was fracturing my bones as I was working. I do not know how I made it through so many days. I went to the ER and the doctor. I believe because I kept saying I was in pain, they thought I wanted drugs. It's very bad that these medical offices think that pain isn't real, and it is humiliating to catch that look when you are in extreme pain.
One night, the last Friday in September, after work, I was ready to drop. I went to the ER, telling this young doctor what was going on, she said, "Let's take a look at everything, doing my bloodwork and X-rays. In conclusion, she tells me, "I am admitting you, your kidneys are shutting down." So, I was hurried into a room, and an IV was administered promptly. The following day, the tests were started. These doctors had an idea I had cancer and ordered a biopsy, which came back 95 percent cancer in my marrow. I had stage 3 multiple myeloma (MM) with eight fractures. I was in big trouble.
A few weeks later, I started radiation therapy for pain, and the radiation actually stopped the progression of the blood cancer in my spine. I had vertebrae that fractured. I had many cancer lesions in my skull, neck, and shoulders. I had a fractured sternum from just standing up, most of my upper body had cancer, including my femur. I had to ask for bone treatment so I would stop the fracturing. I was put on Revlomid chemo and steroids. That was my full treatment. Less than great care. I had no idea I had lost three inches of height due to the vertebrae fracturing, and the doctor did not send me for cement to fill the damaged, dropped vertebrae. It was a nightmare. I was hospitalized for two 10-day inpatient stays. I left the hospital with a walker to go home to a house with 15 stairs to go up to the bathroom, and two dogs that needed walking. I practically crawled up the stairs to use the bathroom. Showering was about impossible. I could hardly lift my arms, and you need a break after the shower, you are exhausted and can hardly move. That time in the illness was very hard, just fighting to get up from lying down. It took a good three years to become more flexible and able to do more. I was pretty home-bound, just going out for treatments and blood tests. But by the grace of God, I started going into remission by numbers, which means the cancer is becoming more manageable.
I had been to church, and the Deacon prayed over me. The radiation doctor told me to call hospice before then. My primary care doctor wanted me to change oncologists, so I did. He changed my maintenance meds doses and a few things. In August, I was going in deep remission, no cancer spike in sight. The thing is, usually you need a stem cell transplant to achieve that deep remission, but I think the man upstairs had other plans. The cancer is still in deep remission, but my bones, although healed, are not healed straight, and I suffer chronic pain and have weight limits I am able to lift. My teeth are cracking off; either the meds or the bone treatment causes this. Cancer can be humiliating with the aftereffects. I was used to being busy; I worked in the dementia unit at a nursing home. I literally was at a loss for what to do to stop the depression of being homebound. I started getting involved with animal rescue. I foster small dogs and go to the adoption events, help interview potential adopters, and so on. The dogs kept me going.
I recently lost the weight I put on from meds and steroids, and that helps with self-esteem. They found skin cancer on my cheek, and it was removed. I am still trying to figure out what my purpose is after this illness. Some doctors say it always comes back because it has no cure. Others said my chances were slim of it coming back. I am a mother of an adult son with Asperger's, so I need it not to come back. A mother's worst nightmare is leaving a disabled son behind. So, day by day, I still tire easily, and things are not always easy to do. I do not claim that cancer; it was never mine. It was a bug that passed through, and to me, it is gone. A stepping stone of life, nothing more. I am on a chemo break because I have not had a spike after being at church, so my doctor felt my body needed a break. Sometimes I say, "Why me?" Didn't I have enough on my shoulders with my son and working a very difficult job full of sadness, watching people lose their memory? Then I think, well, I weathered the storm, someone else may not have, or I think how many would change lives with me even with that cancer if they were worse off. If you're reading this, pray for us, all the people going through this ugly disease, pray that we can be strong enough to ring that bell even with no cure but for a remission.
MaryAnn
multiple myeloma (MM)
