Some (Moderately) Good News for a Change

Yesterday late afternoon we had a short meeting with Dr. Nicol Macpherson, an oncologist at the BC Cancer Agency. As I expected it was a watershed moment in my myeloma journey.

Macpherson started by asking us to get him up to date. So, I laid out the disastrous weekend I experienced after my last Carfilzomib infusion on September 15th and suggested I was done with chemotherapy because it was all too toxic for me. Macpherson agreed. We talked briefly about a drug called selinexor that is being used for patients who are ‘quad- or penta-refractory’ meaning that they have had four or five previous treatment protocols that are completely ineffective, so that patients are not responding at all to treatment or are responding poorly. That’s me. We agreed that it was unwise for me to even consider selinexor as an option given my history with chemo meds, and especially given the fact that the BCCA doesn’t have the resources to fully support a high-risk myeloma patient like me with a need for very individualized and attentive care. In fact, all along my myeloma journey I’ve been treated like a regular myeloma patient when in fact I was always high-risk and subject to very severe adverse reactions to chemotherapy.

Macpherson also acknowledged that I was likely experiencing myeloma several years prior to my diagnosis, something that contributed to the restricted treatment options I now faced. If I had been diagnosed earlier, for instance, I may have qualified for an autonomous stem cell transplant. Not now, I’m too old. So, where do we go from here? As the clich√© goes, only time will tell.

Discombobulated

So, I’m still discombobulated. It goes with the territory. It’s difficult to keep things ‘together’ at a time when the universe is conspiring to tear it all apart.

I wondered aloud in the interview with Macpherson as to what kind of myeloma I had and how aggressive it could get. I speculated that I had lambda light chain myeloma* but he didn’t agree with that. He noted that the rise in my lambda free light chains was not a significant factor in the course of my disease and that I should not be concerned about falling over dead in the next few days. In fact, he assured us that my prognosis was for a very gradual decline in my condition, that I would most definitely live to see my 76th birthday on January 4th, and live for a significant time afterwards. That’s the justification for the title of this blog post wherein I note that we have ‘moderately’ good news: I’m not in imminent danger of dropping dead. It will take time. He even hinted at the possibility that I may regain some quality of life since I won’t have chemotherapy to completely mess with me. We’ll see. I guess taking longer to die is good news.

Now, I’m scheduled for some radiation treatments in Victoria. I have five days of treatments on my plasmacytoma, and one on my right femur where I have a large lesion. The plasmacytoma on my left side close to my vertebral column has grown a lot since February. Actually it didn’t exist until February, so they figure it’s time to shrink it. Hence, the radiation. I’ve had radiation before, on my jaw. This time it will be much more extensive but I hope it does what it’s supposed to do, and that’s reduce pain. It’s technically a palliative radiation.

On a last note, as I wrote in my last post, anticipatory grief is real and can be devastating, more so for survivors than for the person who is dying. In this CNN segment, Anderson Cooper discusses anticipatory grief in relationship to the decline and death of his nanny. Check it out. It’s worth it. The best way to view this clip is to go to YouTube.

________________________________________________________________________

*There are several types of myeloma. Light chain myelomas are rare. I don’t really understand the chemistry of light and heavy chains, so I don’t expect you to, but it’s clear from what Macpherson told us that I have fairly stable bloodwork. My 589 mg/L of light chains is not an issue, because my myeloma proteins are normal. So there’s that.

MAID and Aggressive Myeloma

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.¬†

__________________________________________________________________________

*From: https://www.verywellhealth.com/understanding-anticipatory-grief-and-symptoms-2248855

One Day at a Time.

Who knows how much time I may have left to live. A week, a month, a year, two years, it’s all the same to me because after I’m dead, I won’t be around to regret or celebrate anything that happened to me while I was alive, including dying.

I had my last chemo treatment on September 15th. That’s it as far as chemo goes for me. On the 16th I had to go to the ER to reverse the damage to my body brought on by the chemo meds I took on the 15th. I wrote about my weekend from hell on my last blog post. I don’t need to go over it again. Now, I’m hoping that the damage caused by the chemo meds can be reversed sufficiently so that I can have a modicum of a life back. Frankly, I don’t hold out a lot of hope, but who knows? There are some hopeful signs.

Today is September 30th, 2022.

So, I’m only two weeks without chemo meds, but it seems that I already have more energy than I had while I was on chemo. I’ve had to bump up my dose of hydromorphone, but I’m not sure if that will have to continue into the future. The hydromorphone is essential for dealing with the pain I feel in my thoracic region. That pain originates partly from the surgery I had in 2002 to remove my left kidney, but the soft tissue mass that’s invading my back and left side may very well be contributing as well. I don’t know. All I know is that I experience a low level throbbing pain all the time emanating from there and every once in a while I get a pain spike that is intense to say the least. I’m no masochist, so I take pain meds.

Because I’m not on chemo anymore, it’s unlikely the BC Cancer Agency will be concerned with my blood work. But, I’m concerned with it! It’s true that my symptoms should tell us how I’m doing and possibly give us some indication of how much time I have left to live, but blood tests are much more definitive and might give us a heads-up on how my kidney is doing, and how much crap I have in my blood. My GP doesn’t seem too keen on blood work either. Oh well, we’ll see about that.

I guess my biggest concern now is the uncertainty around how long I might live. In a sense it’s not a big concern because I should know when I’m on my last legs, but I may not. At the end I may decline quickly, especially if my kidney packs it in, but I may find that my last few days stretch into weeks or months. Whatever happens, because of the uncertainty, it doesn’t make a lot of sense for me to plan ahead, except in a general sense, for MAID for example. So, I live one day at a time. I get up in the morning and expect that I’ll still be alive in the evening when it’s time to go to bed. I watch news programs on YouTube, but I’m not invested in them at all. It seems as though the world is coming apart at the seams, but all the seeming chaos is moot as I face my own dying.

I can’t believe it’s the end of September. We’re moving into the Fall. The big maple in the front of the house is just starting to turn. The leaves change from green to a pale pink on the underside and bright red on the top. They fall almost in unison and cover the ground with a carpet of pink and red. There is dying in this process, but not death, not yet. The tree is preparing for its winter sleep, and will grow a fresh crop of bright green leaves come March and April. Death is in its future but it’s not for now.

The sword ferns are a different story. They have spores that are spring mounted on the undersides of the ‘leaves’ and that are flung out in a desperate search for a bit of fertile ground to sprout and grow. Chances are that none of the millions of spores will find a propitious bit of ground to grow into a new fern. Not to worry though because the fern itself will sprout new growth come Spring and just carry on. The ‘old’ leaves will turn brown and be displaced by the new leaves. They will create nutrients for the plant as it carries on. There is dying here, but not death, not yet. Death will come much later when the plant itself has no means of recreating itself, when it is exhausted and when the ground that is its home is no longer capable of sustaining it.

We have what’s left of a cascara tree in our yard, about six metres from the south corner of the house. It was a beautiful tree with a sculptural quality and a large canopy when we moved here in 2002. The tree itself was probably ten metres tall. We figured it had been growing on the property for forty years. Then one day it just up and died. The leaves all fell and the bark peeled off in strips. Its skeleton still stands. We hang Christmas decorations on it now. It lost its leaves every year like all the other deciduous trees on the property only to come back strong and vibrant every Spring, until that sad day a few years ago when it died.

Plants aren’t afraid of death and dying. They don’t feel fear. Yes, some people have anthropomorphized plants and have attributed to them human like feelings and motivations. That’s just plain silly in my mind.

Truth is, no matter who or what we are, we die. Simple. But like most animals we fear dying. Trees and plants in general have a different relationship with dying and death than animals do. They cannot flee from threats to their lives. They die every Fall only to be revived in the Spring, but even they ultimately meet their end when they reach the limits to growth. It could be argued that we follow the same trajectory except that we can successfully flee from threats to our lives, at least to some extent.

To me, cancer in old age is natural, and part of the deterioration that many organisms experience in the final stages of life. I love my life, but it must end. My body has decided that its exit from life will be via cancer. How can I argue with that? I tried to argue with it by using chemotherapy, but unsuccessfully. Now, it will countenance no significant opposition. Such is life.

___________________________________________________________________