August 2024

First Month after Stem Cell Replacement

Being in the hospital for a whole month on my back, not able to even get up to go to the toilet, bathing, eating and just having a sense of being alive was the most terrible experience of my lifetime.  The nausea was overwhelming.  I could not put food to my mouth, let alone swallow.

The stem cell replacement treatment was not what I expected.  I cannot get my head wrapped around the process and the heavy dose of chemotherapy that was delivered into my body and then my reasonably healthy stem cells were re-introduced into that toxic environment.  The effects of the chemotherapy on my body were devastating.  The most devastating was the loss of my hair and the incredible fatigue.

Throughout the month of July when I was hospitalized, I followed my daily bloodwork levels, my neutrophils and other key elements as they all went down to 0.0 and then started to come back up.  When I was released from the hospital, my levels were still below the ideal markers.  Not one single one of my many doctors came to see me in the hospital.  The group of nurses that orchestrated the stem cell process did not check in on me. 

I was looked after by the nurses, PSA’s and the doctor on call for the floor.  Asking questions got me nothing but blank stares.  There were a few of the nurses that gave me my blood numbers and neutrophils, but little explanation about what anything meant.  They really wanted me out of there, home, and threatened that if I did not start eating solid foods they would start tube feeding me.  They tried, but that did not work.  I finally ate some solid foods and the next day I was discharged.

The first thing that I did upon coming home was to purchase a Kangen alkaline water machine.  I have been doing a lot of research on how alkalizing the body through food, water and diet can have a lot to do with battling cancer, building up and balancing the immune system.  Refer to some of my book reviews.

The other thing that I am doing to help with my battle against multiple myeloma is to spend 20 to 40 minutes, twice a day, on a PEMF machine that a very good friend has loaned me until I can purchase one for myself.  At first I didn’t notice anything, but after using it faithfully for one month, I can sense that it is doing something with my body.  The neuropathy that I experience in my feet, legs and abdomen seems to calm down.  I like to use the machine after dinner before going to bed.

The neuropathy in my feet, legs and abdomen is very painful during the night but is quite tolerable during the day.  As soon as the dark comes on at night, I can feel my body stiffen and then the pain and discomfort increases.  It is very concerning during the night if I have to get up to go to the toilet as my legs are weaker and transferring from my bed to the wheelchair to the toilet has to be very carefully executed.  As daylight comes through my bedroom window at daybreak, all this neuropathy dissipates.

The first two weeks of being home after my stem cell replacement treatment were very difficult.  I lost all muscle tone throughout my body.  My legs were useless and my upper body strength was gone.  I had to depend on my daughter and my son to help me in and out of bed, my wheelchair and to the toilet.  I slept most of the time during these first few weeks as the fatigue, like in the hospital, was overwhelming.  Thank goodness for being home and being able to eat healthy food that we grow on our farm instead of hospital food.

Moving into week three of being home, my legs are starting to get stronger.  I am starting back into my daily bed exercise routine, which are mostly stretching and gentle muscle exercises.  My body is calling for movement.  Movement seems to help with the neuropathy.  I am spending more time in my wheelchair and getting outside for fresh air.

I had my first appointment with my oncologist/hematologist doctor at the 3 week mark.  He did bloodwork, but did not discuss it with me.  He went straight to further chemotherapy treatments and going on Lenalidomide as a maintenance program, which is a pill that I would be taking daily for an indefinite period of time.  I am going to have to research and sit with this decision.  I told him that I was never going to do another stem cell replacement.  It was just to much!

Kathryn