December 21, 2022
Happy Winter Solstice
I'm keeping rather cozy these days, staying mostly inside and continuing my penchant for decorating for the holidays. Lights, lights and more lights. If you want to see a slide show of mostly past and few present holiday decorations, check out this link: https://tinyurl.com/1200xmas I think this is the first year in my 72 years that I haven't put up a Christmas tree. That's counting all the years growing up in Illinois, as well as living in Cincinnati, Tucson and California. This year, I decided putting up a tree and a ton of ornaments was a little more than I could handle -- not to mention the thought of taking it all down.
Ever since my cancer developed, I've been increasingly sensitive to the cold. I can't complain too much since they're forecasting Arctic weather during the holidays throughout most of the U.S. Here in the Bay Area, we've had highs of 40's-50's and lows near or below freezing. What a wimp I've become! I've also had to throw a few covers over some of my more sensitive outdoor plants. I remember years ago when Tim and I had to bring in more than three dozen pots of large tropical Vireya rhododendrons when we had many days of below freezing temperatures. Our house looked like a jungle. After hauling them in and out of the house every day over several weeks, we decided that survival of the fittest was the way to go as far as our outdoor plants. Today, one hardy soul remains.
Medically, the last couple weeks have been a bit rough. The side-effects from three weeks on my new cancer regimen (Kyprolis, Cytoxan and Dexamethasone) came with a few side-effects: diarrhea, congestion, headaches and severe chills. All of which are gone for now -- except for the diarrhea. My oncologist wants to make sure that gets under control before continuing the full dose of drugs. As of right now, it seems like the diarrhea is waning after taking daily doses of Cholestryamine. I'm hoping this new regimen will start reversing the cancer's progression.
The other complication is my osteonecrosis of the jaw (ONJ). I've been having intermittent pain in my lower left jaw for the past couple weeks. I take pain meds ranging from Tylenol (can't take Ibuprofen) to Norco. My ONJ developed as a result of taking Zometa infusions for bone strengthening. In "uncommon "instances, myeloma patients develop ONJ as a result of taking Zometa (roughly 1 out of 100 patients). After visits to my dentist, endodontist and oral surgeon and then discussions with my oncologist, there was a difference of opinion as to how to proceed. The oral surgeon didn't want to do any aggressive treatment for my exposed jaw bone like bone scraping or surgery since it can make the ONJ worse. He preferred to monitor the situation for now, hoping it might resolve on its own. However, he also felt I should continue on Zometa as long as it was helping my overall bone strength since the myeloma has resulted in my having fairly fragile bones. "Choosing the greater good" is how he put it. My oncologist, however, strongly disagreed as he doesn't want me to continue taking Zometa at all. That's pretty consistent with current myeloma research. Right now, that's where things stand.
In the meantime, I've also signed up for a second opinion from UCSF, my old alma mater. I wanted to get an opinion on my ONJ , as well as reviewing my current treatment and recommending future options if and when the current regimen isn't working. I saw Dr. Jeffrey Wolf at UCSF when I was first diagnosed in 2015. I may be getting my second opinion from him or one of the other three myeloma specialists at UCSF. My Kaiser oncologist Dr. Green is in almost weekly contact with these UCSF specialists and welcomes their input. However, he does remind me that there can be too many cooks in the kitchen. As has been said by others... If you have five myeloma specialists in a room, they'll come up with six different recommendations.
There are a two very new myeloma procedures that have recently been approved for treating myeloma after previous treatments have failed: CAR-T therapy and Bispecific antibodies. Last week, NPR's Science Friday ran a piece on these new myeloma treatments: https://www.npr.org/podcasts/583350334/science-friday While both of these procedures can have serious complications, they are among the many new drugs and procedures that have been developed and approved for myeloma just within the past couple years.
As always, I'm ever so grateful for all the love and support of my friends and family. It keeps me going. Happy Holidays to all of you!
The dreamcatchers in the window above are from the town of Beaver, Alaska, north of the Arctic Circle. In winter, the town is only reachable by small plane. Tim and I went there in 2005. Residents use snowmobiles to travel to other towns on the Yukon River which can be seen outside the window.
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