Living and Dying with Multiple Myeloma (and other cancers)
By way of annual exam, in 2010 I was diagnosed with Prostate cancer. In 2011 I had successful robotic surgery and was headed down the road to recovery. A few months later I was diagnosed with another, unrelated cancer, Multiple Myeloma.
I started letting some friends know through email what was going on. With each update, the mailing list grew. My son, Robin, suggested I create a blog instead of sending out emails. I’m not confident I know what a blog actually is, but here we go.
I’ve had two MRI’s since my last update. The one in September caused some concern. The Neurologists office called me the same day I had the MRI saying the doctor needed to see me as soon as possible.
I told the nice lady that sounded kind of ominous. She replied that she’s “sure its just regular doctor stuff, but could I possibly get in there today?”
When I saw the Neurosurgeon the next day, he came into the exam room and said, “I had to see you with my own eyes!” Did you walk in here unassisted? Do you have pain shooting down your legs? Tingling or numbness? How’s your bladder control?
He explained that the MRI showed a small piece of what was left of my crushed vertebra poking quite sharply into my spine (the T8 vertebra had become a tumor from this cancer, and then it collapsed).
He did some push-pull tests on my legs and said if any of those symptoms develop, or if I lose bladder control, to call him immediately. And then he said, “No, go straight to the emergency room and have them call me.”
I knew there were a lot of people praying for me, so I asked him if my walking without assistance and having none of those symptoms might be considered a miracle. “I won’t say miracle,” he answered,”but you are VERY, VERY lucky.
There was some talk about spinal support (surgery), but the most recent MRI showed no notable change.
The doctor determined that the vertebra had crushed as far as it would go, and since I had no symptoms from the poking bone fragment, he said the potential benefit from surgery would not outweigh the risks involved.
I can feel that poking in my back, but it’s not pain. It’s more like a distraction. It’s almost always there, but entire moments do pass when I’m not aware of it. I got the distinct impression the doctor thought it was something of a medical oddity.
I thank you for praying for me, and I thank God for every walking, pain-free day I get. I’ll thank him for all the other days too, but I’m sure I like these better.
I recently had my 3-month Multiple Myeloma cancer test and I found the test results message from my Oncologist on our answering machine today after work, “Stable, the same as before.” That’s a message I can’t imagine getting tired of hearing.
Hi, Everyone:
Some have asked how I am doing, so maybe it’s time for another update. My world seems to be full of doctors now. I have recently seen my general practitioner, my sleep doctor, and my eye doctor. On September 12th, I saw my prostate surgeon / Urologist, our first visit in over four months. They tested my blood and found no trace of PSA, so I remain prostate cancer free.
As for my side effects from the surgery, things are pretty good, and the doc predicts that they will continue to improve as time passes. I won’t see him again for six months.
On September 08, I saw my Oncologist. They tested my blood to see if there is any change in my Smoldering Myeloma. That’s what I have, Smoldering Myeloma. It will smolder in my bones until the day it makes a move, if ever. It’s not guaranteed, but the Doc predicts it will happen; it’s just how my numbers add up.
I’ve been holding this update for those test results, and I just got them today. I will have this test every three months. What they look for is the amount of, “M Protein” in my blood. The reading from this test was 0.8, and the previous test showed 0.8. My first test in July gave a reading of 1.1, so the number has actually come down just a bit, and lower is better.
On August 25th, I saw my neurologist. I am shorter than I used to be. He said my vertebra was completely crushed, but as long as I didn’t have pain shooting down my legs and loss of bladder control (from crushed nerves), I was in pretty good shape and there wasn’t much else to do about the back but let it heal.
I am classified as one with, “tolerable pain.” I have a mild back ache most of the time, but it can be controlled with over the counter medicine, so it’s tolerable. My neurologist wants another MRI this Tuesday. I will also see my Radiologist near the end of the month for a follow up appointment.
The hospital called me the day before my final radiation treatment to tell me the secret radiation treatment patients parking lot, just outside the radiation department door, would be closed the next day. I/We spent the month hiking from the parking structure across the street, having never heard of the secret parking lot.
So, how am I feeling? I’m feeling okay, looking forward to feeling better. I have regained my appetite, and some of the weight I lost. I have a list of physical complaints, but it is short and relatively petty.
I thank God every day, as I have much to be thankful for, including you asking about me now and then, and remembering me in your prayers.
Thank you.
All:
Since my last update, I have continued to enjoy improvements in how I feel. The daily radiation treatments are easier, the pain is much less, and I rarely sleep at the dinner table anymore. I have reduced my medication enough to enjoy again the independence of driving after 6 weeks of passenger only status.
I’ve been working two hour days at my Public Works job and hope to stretch that out soon to 3 or 4 hours. I have regained some appetite and I believe I have bottomed out on the weight loss at 30 lbs.
I’m not sure where the pounds went, but when I tried on my previously snug fitting suit for Meagan’s wedding, I hooked the belt line button, pulled the zipper up and when I let go, the pants went straight to the floor.
Wednesday we got the results of my bone marrow biopsy. It was a kind of, “Good News / Bad News” report. It has been my misunderstanding that I might have Plasma Cytoma, “OR” Multiple Myeloma. I now understand that both are the same Cancer. Both are points on a spectrum of one Myeloma Cancer.
My Oncologist explained that I currently have “a” Plasma Cytoma, but my bone marrow revealed that I have enough abnormal cells that I will likely develop Multiple Myeloma in the relatively near future. At that time, I will have Chemo therapy and hopefully stop the growth of the cancer.
They don’t do a preemptive strike on the Cancer; you have to wait until it develops. In the meantime, my condition is referred to as Smoldering Myeloma.
I am constantly amazed and comforted by the kindness of others. I thank God for my wife and for everyone caring for me, driving me, praying with and for me. I hope you will continue to pray now and then for my recovery, for Diane’s strength and stamina, and for both of us to remember that God is in control.
I guess that adds up again to praying for God’s Peace. That’s what I pray for each of you.
Until later, Scott