When I was about 24 years something happened that changed the course of my health. I developed gangrene in my gallbladder. I’ve never really thought about the why and how until recently and the information is very eye opening. I’m not going to get caught up in that right now, we may talk about that later. My body dealt with the gallbladder pain and surgery by developing fibromyalgia, which can be brought on by severe trauma to the body. But my doctor didn’t realize my body was going through that he took my symptoms (exhaustion upon waking, pain, etc. – and blood test results – to mean something hematological or oncological. It was that doctor’s visit where I learned there is multiple myeloma in my bone marrow.
I try to avoid saying “I have” something. I much prefer to say “I’m fighting” or something similar.
I spent about six months taking daily oral chemotherapy and giving myself injections while I was finishing up my degree, working (18 credits per semester and two jobs) and raising my daughter Amber who was almost 4 years old. The treatment was successful, but over the years and through further testing it was discovered that the myeloma was still hanging around in there. My physician’s assistant says it’s smoldering and most of you are probably thinking remission.
While in remission I’m being closely watched, but there are other symptoms that are showing themselves including extremely dry eyes and mouth. With someone like me, who is dealing with another autoimmune disorder: multiple myeloma, the diagnose doesn’t require too much further testing. Both are autoimmune related. With sjogren’s my white cells attack and fight the natural processes of saliva and tear production. It sounds simple, but can be an extremely painful disorder to deal with especially within the mouth. Out of the chronic pain the mouth pain is what’s most unbearable for me so I’ve developed a system to keep that under control.
Most recently, I’ve been feeling a worse, which tends to happen with fibro and sjogren’s. I call it attacks. It’s when every pain and symptom are increased, which causes me to be relatively incapacitated. That can go on for an entire day to more than a week. This time, I didn’t really think too much about it, but made sure to let my doc know. It turns out that it’s way more than a fibro flare. The multiple myeloma has reared its ugly head and I’ll be beginning chemotherapy again very soon. (Decision is made based on blood work, bone scans, bone marrow extraction and 24-hour urine test.)
Each week for a 28-day cycle I’ll take at least three additional pills per day (right now, I take about 16 each day including allergy meds) and will go to the hospital once a week for injections that will be administered in my tummy. At the end of 28 days everything will be retested. My doc recommends a bone marrow transplant, but I’ll just cross that bridge when I get to it. (It’s possible to do another 28-day cycle or a regimen of drugs.)
The myeloma cells are fighting all of my good plasma cells and I’ll be fighting them back. I beat them once…