So, things are moving along. To recap: I went into the hospital for my infusion of the chemo med Carfilzomib on September 15th. On the 15/16th during the night I didn’t sleep at all because I was in an altered state and shivering uncontrollably. In the morning, we called the Cancer Care Centre at the hospital, and they told Carolyn to take me to Emerg right away. It was a good thing she did because my kidney was shutting down. They kept me in the hospital for three days on an IV (lactated ringers) and a catheter, but you already know that. Fun and games.
Now, I’ve decided no more chemo for me. It’s been three weeks. It will be some time before I know what the result of that decision will be, but I will not recover from myeloma. Last week I had a chat with a palliative care doctor. She just called me a few minutes ago to see how I was making out with a new prescription for dexamethasone. We also discussed some more imaging for my leg and side (for a plasmacytoma) in preparation for some radiation therapy in Victoria sometime in the future, who knows when. Just don’t wait too long. The palliative care team at the hospital has been so kind and helpful.
The hospice staff has been wonderful too. They’ve laid out all the care possibilities to help as I get nearer to ‘the end’ as they put it. This afternoon Carolyn and I had a chat with a doctor that provides MAID services. I’m all set up for that. I don’t have a date or anything like that, but I do have all the paperwork done for when and if I decide it’s time. He was great. He’ll call me in six months to see how things are going if we don’t call him before that. At that point (April 2023) if I haven’t called for MAID, we will need to redo the forms.
An aside: the weather has been sunny and dry. Warmish too. We really need rain, but this is quite pleasant. I’m sitting in the living room but with the door to the deck open. Such an agreeable late afternoon.
Saturday, October 8th, 2022
Before I forget, I want to note that I learned a new term yesterday talking to the MAID doctor: anticipatory grief: Anticipatory grief refers to the sorrow and other feelings you experience as you await an impending loss. It has some benefits: It may help you find closure, settle differences, or prepare yourself for the pain of letting go. This kind of grief can come with lots of other emotions, including anxiety, guilt, fear, and irritability.* There is no doubt that I am feeling anticipatory grief, and so is my family. Of course, my grief is for the end of my life. For my family, the grief will extend after my death but in a different form.
It’s disconcerting to be so unsure of the future. We have no idea what the estimated time of death is. We’ll discuss that with the oncologist this Wednesday. He may have some insights by looking at my bloodwork. The most concerning number, although there are a few, is the rise in my lambda Free Light Chains. Now that marker and its number won’t mean anything to you, but what it describes is the amount of myeloma protein in my blood. The reference (normal) range for this indicator is 5.7 mg/L – 26.3 mg/L. My blood as of three days ago is 589 mg/L. On December 13, 2021, it was 11.7. Then it went up to 174.2 on June 27, 2022. Since, it has gradually made it up to 589 mg/L. It can’t go much higher without damaging my kidney.
In fact, my kidney is already compromised to some extent but it’s still hanging in there. I would speculate on my survivability now, but I think I’ll wait until we have a chat with my oncologist on Wednesday. I know that my type of myeloma is particularly aggressive, so we’ll see.
Strange as it may seem, if you came for a visit today, you’d probably say: “Hey, you look good!” I would respond: “Looks can be deceiving!” The disease I carry is all on the inside. There isn’t a lot of evidence of it on my body. My insides are scary though. Good thing you haven’t got x-ray vision like Superman, otherwise you’d see the mess in there.
9 thoughts on “MAID and Aggressive Myeloma”
thanks for the update Roger. challenging times ….and I can see you’re looking after your mind. thanx for sharing. Many changes about these days…. at our age we need to have our eyes open.
Challenging times, indeed. Thanks for your comment, Ed.
Dear Roger, what can I say, but ❤️. You are a man with a big heart, a big intellect and much bravery.
Sent from my iPad
Thanks, Susan. I miss our times in the printing room. No chance of me ever getting back there, but I have great memories of the place and of all of you that were my classmates! Thanks for the kudos. I appreciate it.
I am going to miss your messages when they end. And, although we never spent much time together, or became ‘fast friends’, I want you to know I am going to miss you immensely too. You’ve become somewhat of a guiding star for me. When I have a challenge, I’ve adopted a sort of “What would Roger do?” attitude. Don’t let that go to your head–I’m not a Christian and don’t believe in Jesus, or I might have made another choice!
I also want you to know you’ve been appreciated. After you framed my “Walking in NYC” abstract, it was admired and acquired by a good friend in Victoria. Whenever I’d trip across you in Cumberland, you always took time to speak with me which reinforced how being noticed and heard is so important for all of us. You and Carolyn welcomed me into your home where I could envy your Clive Powsey artwork, and now I own two of his pieces. (I’m sure Clive appreciates that as much as I do.)
My heart thanks you for all the gifts you’ve given me.
Thank you, Bette. We’re kindred spirits I think. I always enjoyed talking to you and I miss being able to wander
around Cumberland. I don’t have a lot of stamina these days. I’m not particularly concerned about Covid, but Carolyn is. She has autoimmune issues that require her to be cautious. Me, I don’t care so much. I just got another booster shot and besides, I have bigger fish to fry.
All the best, Bette. Take care.
Yup, glad I don’t have xray vision! We’re loving being in Mexico. Found a hotel we can afford, rented a car for a month and are starting to talk about getting Mexican Residency status. We might never come back. Mexicans pretty much are happy, loving, friendly people. Poorly educated but wise in other ways. Seeing how they treat their kids they grow up loved and cherished as individuals. I think that explains how, even in povety with little hope for anything but a life of working 10 hours a day these folks are happy and seemingly well adjusted and, well, sweet. We are in the downtown, working class part of Puerto Vallarta far from the American and Canadian gated white communities where the only Mexicans you meet are your housekeepers and servers. Here I have met an IT company exec, a young man who manages 4 hotels, a heavy machine operator and an OXXO (Mexico’s version of a 7/11) employee. Beautiful people but I have a language problem. I am learning Spanish, doing lessons every day and the staff in the hotel have agreed to make me speak Spanish as much as possible.
The other amazing thing is that my COPD is much more manageable and Signi’s crones is all but gone. We were talking this morning and conjecturing on why and we think it’s because we’ve been getting much more exercise. Walking a lot and no elevator in the hotel and those three flights of stairs are getting easier every day!
Anywho, always a pleasure reading your blog. I feel like I’m sharing your journey to an extent…
Take good care Roger!
On Sat., Oct. 8, 2022, 7:08 p.m. Roger Albert – Always a Sociologist: Now
Thanks, Jack. You raise my spirits! Great to see that you’re doing well in Mexico. Most of the people I know who go to Puerto Vallarta hang out in expensive hotels or Air B&Bs. Your style is my style. What you’re doing is what I would do too. Looks like you’ve got interesting neighbours too.
I’m taking care and hoping to make it until Christmas or my 76th birthday which would be on January 4th. It all depends how aggressive the myeloma gets in the coming weeks.
Great to get your comment.
Can I come for a visit?
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