How do you make God laugh?
Tell him your plans.
I have been diagnosed with multiple myelomas, a form of cancer in some cells found in the bone marrow. It is not survivable. The best outcome is four relapses with increasingly aggressive responses for a survival of greater than five years. However, 46% of patients do not make it through six months. My oncologist’s best one-liner is “We will know more in four months.”
I had been planning to have prostate reduction surgery for over two years. In November 2019, my urologist suggested a less invasive procedure and he set me up with another urologist for a consultation. That specialist's plan was to insert glass beads into the artery feeding the prostate thus causing the prostate to stop growing. The treatment is popular in the national health care systems of the Mediterranean tier. (See below re Europe.) The problem is that beads get lost, flow elsewhere, and cause strokes and infarctions. Plus, the path in is not through the femoral artery but following the arteries in my arm through my chest and down into my prostate. It just did not seem like a good plan. So, it was back to square one. Then Covid-19 happened.
So here I am 30 months later, vaccinated and boosted and ready for the surgeon. We discussed laser ablation and laser cauterization and I tossed a coin. The urologist wanted to make sure that there was no cancer in the prostate right now. On 29 May I had an MRI scan. The prostate was good. However, the MRI revealed a problem with the bones of the hip (ilium). The MRI was followed by a computerized tomography (CT), previously known as computer-assisted tomography (CAT). The CT of 20 June revealed a “secondary malignant neoplasm of bone.”
They said: “OSSEOUS STRUCTURES AND SOFT TISSUES: Multiple lytic lesions are scattered throughout the axial skeleton, the largest is expansile and in the right iliac bone measuring 8.7 x 3.4 cm. … Multiple scattered lytic lesions are seen throughout the axial skeleton, which are nonspecific, but suspicious for multiple myeloma or metastases.” And there were some other findings of lesser consequence (in my opinion).
My urologist explained that I should read some reliable websites such as the Mayo Clinic, that the multiple myeloma is treated with monoclonal antibodies, after an immunomodulatory agent with a proteosome inhibitor. And he referred me to an oncologist and we met on 30 June.
The oncologist set me up for a sedated biopsy on 13 July. On 20 July, I met again the oncologist to discuss the evaluation of the biopsy and the plan of treatment. (I was not in doubt about the need.) Fortunately, he has two area offices and one is within walking distance of my home. In fact, I was assured that I could walk myself in and back after each treatment session.
But he was less than candid.
Laurel said that they want to be positive and upbeat and therefore somewhat vague about the downsides because we all know that attitude is important to recovery. The fact is that he lied by withholding the truth. He told me that treatment will not require chemotherapy. It will be by monoclonal antibodies: two pills and a shot every 21 days for four months. In point of fact, the treatment is chemotherapy: Lenalidomide plus Bortezomib plus Dexamethasone. I will be nauseous and fatigued. I just will not lose my hair. I will be at risk for other infections, anemia, both bleeding and clotting, and neuropathy.
After the chemotherapy, assuming that I have responded well, then the monoclonal antibodies are injected in order to rebalance the antibodies created by the cells that are now overproductive.
“Antibodies are produced by B lymphocytes, each expressing only one class of light chain. Once set, light chain class remains fixed for the life of the B lymphocyte. In a healthy individual, the total kappa-to-lambda ratio is roughly 2:1 in serum (measuring intact whole antibodies) or 1:1.5 if measuring free light chains, with a highly divergent ratio indicative of neoplasm. -- https://en.wikipedia.org/wiki/Immunoglobulin_light_chain )
It is scary when Wikipedia is more informative than your doctor. To be fair, he did draw a divergent Y with a little K and a little L (though he did not use the Greek letters).
For myself, I feel that I am behind the curve, trying to find what to read. The oncologist gave me about 100 pages from Wolters Kluwer update dot com website. All I have is the paper printout not access to the website because I am not a professional provider. So, I do a lot of flipping back and forth to find definitions. I asked for a second opinion and mentioned the “goat behind door number two” and he seemed to understand the allusion. He promised to follow up with the University of Texas Medical School. (I think that they graduated their first class just two years ago. I watched the new buildings go up. The last medical research I did in 2014 was at their so-called medical library wrapped around a spiral stairway inside the Texas Tower on campus.) Anyway, I have not heard back from that person. So, this weekend, I started from scratch and made appointments at M D Anderson.
I do not respond well be being addressed like a child. The reassuring singy-songy voice just brings out the worst in me and I still owe the nurse practitioner (MSN APRN FNP-C AOCNP) an apology. She called me back the other day with information that she forgot to give me when we met. She said that she did not know how she could have forgotten and I confess that I did not remind her of that moment.
Europe: What a sense of humor. In most European nations, people my age do not get treatment for this. It is considered a normal end of life. How else do you provide free healthcare for everyone?
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