Ok. It's been two weeks since my last post, so here's an update to what's been going on.
The most important development is the confirmation that my blood tests show NO TRACEABLE CANCEROUS PLASMA CELLS remaining in my blood stream. There actually haven't been any found since Mid-November. I think it's amazing that modern medicine can target things so well and command the body to destroy and filter out the cancer so quickly. I'm so blessed to live when I do. If I had been born 100 years earlier, I would likely have not had any idea about the cancer and would have died at age 40 from pneumonia or some other ailment that became too severe for my body to handle because of a sorely deficient immune system. What a blessing to live now! Anyway, my blood being cancer-free should not be confused with being cured, as I am not. My DNA is still "broken," and without continued chemo and my planned stem-cell transplants, there will be no cure for me.
Last week Monday, the 17th, I began experiencing some pain in my hamstrings and the back of my knees. over the next few days the pain moved lower and lower through my legs until it reached my feet and stayed there. Now, my hands and the soles of my feet are frequently (if not, regularly) in pain unless I take Ibuprofen, Oxycodone, or a combination of the two. When I was at the BMT clinic this Wednesday, Dr. Mitchell said it's probably Stage 1 Peripheral Neuropathy. Nothing to be too worried about right now, but we need to keep tabs on it. The neuropathy is brought on by cumulative damage to my nervous system caused by Velcade, one of my chemo drugs. If the problem continues to get worse, they can modify my dosage, as stage 1 and stage 2 neuopathies can be reversed, but stages 3 and 4 are rarely reversible.
Last Thursday afternoon and evening, I began to show signs of a heavy cold and chesty cough. It failed to go away or even subside, and Sunday night I began to run a fever. Over the next few days including Christmas (Tuesday), my temperature fluctuated between 99.0 and 101.7 degrees, my cough became more persistent, and I began to hear and feel fluid in my chest...yes, even without a stethascope. On Wednesday, I was scheduled to go into the cancer clinic at Intermountain Med Center for bloodwork in the morning, then LDSH's BMT clinic in the afternoon for Day 1 of my final chemo cycle before my first transplant. I called the BMT clinic, and told them about the cough and fever, and they told me to come in that morning. When I left the clinic at about 2pm, I had been diagnosed with my second case of pneumonia since my cancer diagnosis and had my chemo cycle suspended by at least one week. I'm now on 750mg/day of Levaquin (an antibiotic) and am currently sitting in the BMT clinic as I write this for an IVIG infusion. IVIG is Intravenous Immunoglobulin, an almost-clear blood product that contains the combined immunities of over 1,000 people. As you might imagine, it's given to bolster my immune system not just for the pneumonia, but for whatever else it may have to fight, as its effects can last anywhere from a couple weeks to a couple months. They've suspended my chemo because, by nature, chemotherapy meds wipe out my system's infection-fighting ability with the destruction of my white blood cells.
One of my favorite nurses, a gal named Samantha, or Sam for short, is moving away and today is her last day here at LDSH. She became a favorite nurse a couple weeks ago when I was in the clinic for chemo and had to wait a while for the pharmacy to get it upstairs. She went on break and told Tony she was going to get some ice cream. When she asked him if he wanted some, I joked that I could really use some to help with my dry mouth and throat. I didn't think she'd take me seriously, but she went and got me a big scoop of vanilla ice cream. Here's a picture of Sam and Tony...
...And the ice cream Sam brought me. =0)
That's about all I can write right now, as they gave me some Benadryl before starting the IVIG. That just adds drowsiness to drowsiness, as I took an Oxycodone for the pain in my hands and feet before I came in this morning. I think I need to take a little nap now.
I was diagnosed with Plasma Cell Leukemia (PCL), an aggressive blood cancer, in October 2012. After 4 months of chemo, 2 stem cell (bone marrow) transplants, 72 days in the hospital, over 100 clinic visits and 5 years of post-transplant recovery, I WAS DECLARED CURED IN MAY 2018. Now I work hard to live my life with meaning. This blog served as my journal, chronicling my thoughts, feelings and experiences as I lived in spite of the PCL. Comment on or share this blog with others, if you’d like.
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So sorry you have pneumonia, John. Praying you get over it quickly and can get on with treatment. Glad your counts are better. I live with some residual neuropathy in my feet mostly, but it's liveable and I'm thankful it's not worse! Take care and stay strong.
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