October 2024

Hurray, my hair is finally starting to grow in!

So here I am in month three after my stem cell treatment.  I can honestly say that I am not overly happy with the medical system.  I am grateful that I live in Canada and I have free medical care, however, the quality of care is questionable.  My oncology doctor is still being elusive with regards to my blood work results.  When I ask him for a copy of my blood work, he says he will have to have his secretary mail it to me, then I have to follow up with her to make sure that is going to happen.  He is still pestering me to consent to taking the low dose lenalidomide treatment as a maintenance program.  I told him that I want to know exactly where my cancer stands before I make a decision.

Back in April, my oncologist from Kingston Hospital told me that my monoclonal proteins (which indicate multiple myeloma) has decreased from 48.1 g/L in January to 17.9 g/L in March 2024.  I said that to my knowledge this test has not been updated.  He said, “Oh, yes, it was done in August”, and he quickly went out of the room and came back in with a copy of the report.  I showed that monoclonal proteins had dropped from 60.0 g/L in February to 4.0 g/L in August.  He indicated that these tests will be done every three months.  So I told him that we were obviously due for a new test.  He said, yes, yes, I will put in a requisition.  I asked, so can it be done today while I am at the hospital since I live far away.  He hummed and hawed and then said that yes, he would take care of that.  I asked him to make sure he sent me a copy of the report as I know not to ask him for a copy when I am in the room with him.  He assured me this would happen.  Two weeks later and I still do not have a copy.  I am having to call up his office and remind his secretary once again.  Then he comes back to the lenalidomide issues and again, I told him that I wanted to wait and see exactly where my cancer is.

As for month three in general, it has again been a difficult month.  The neuropathy in my legs is still the same.  I am now having numbness in my right thumb and stiffness in the joints on this hand as well as I am experiencing excruciating hot pain during the night.  I don’t think this is carpal tunnel syndrome as one doctor suspected.  My left hand is also showing signs of numbness and stiffness.  My daughter suspects arthritis due to my age.  I am not ruling out that there might be additional damage to my spinal cord that is causing this.  I finally have an appointment with the spinal cord injury doctor from Providence Health Care Hospital in Kingston mid-November.  I can’t wait, as I will have a lot of questions for her.

The other thing that I am experiencing is increased incontinence.  Is this from the chemotherapy or is this a result of something that is going on in my spine, such as a compressed disk or active lesions?  My back has been sore and is slightly painful come night-time.  Makes me concerned as to what is going on.

My new family doctor stopped by my house to drop off some paperwork.  Amazing that she is willing and wanting to make house calls, especially since she know that I am isolated, in a wheelchair and without someone to drive me to appointments unless it is convenient for them.

She did explain to me about the belly-bloat that I experienced with the onset of the tumor/cancer/spinal cord injury.  She said that when a spinal cord injury such as mine occurs in the upper thoracic are of the spine, it cuts off the signal from the brain to the organs below that point of injury.  Okay, how come I see some people with a bloated belly and others without.  She only commented that everyone is different.  I am doing my exercises faithfully every day and working on my abdominals.  The belly is tightening, but still distended.

I had full continence after my surgery up until July when I went into the hospital for my stem cell treatment.  Everything has gone to pot since then (literally).  I can’t think that this increased incontinence is not a result of the chemotherapy.  The more and more I think about things, the more and more my mind is made up not to take the lenalidomide.

Kathryn