Well, howdy there internet people, it’s me again. Visited my local GP/oncologist this morning. He showed us images of the growth that is happening alongside the left side of my spine. I think it’s trying to replace the kidney that I lost in 2002. It’s big enough. Just kidding, of course. The growth is pretty impressive, let me tell you. I’m not feeling any ill effects from it at the moment because it hasn’t gotten into my spine. If it had, I’d be paralyzed. It is large, however, and nothing to sneeze at. Probably not immediately life threatening, but I have enough other issues to think about that are threatening my life, not the least of which is my age.
I’m feeling very strange at the moment. I am still sentient from what I can tell, although I’ll leave it up to others to confirm. Sentient or not, I’m close to death. From what I’ve read about Medical Assistance in Dying (MAID) people are often sentient until the last minute. Maybe I can shoot for that although being zonked out on morphine has its appeal too as I slip off into death.
My local GP/oncologist is in contact with the oncologist in Victoria at the BC Cancer Agency who looks after my file, and he (Macpherson in Victoria) doesn’t support the idea of my getting another shot with another chemo protocol. I’m done as far as he’s concerned. He expects more chemo would just be futile and would not enhance my life chances a whole lot. I will know the results of my latest bloodwork late next week and that will help me decide as to whether or not I push for a second opinion and for another chemo protocol. Whatever happens, as Carolyn points out, even a new protocol would likely give me just another nine months of life at best, so what’s the point?
It may be time for me to accept the increasingly obvious fact that my life is done. Well, I may have a few more months to live, but not years, certainly not years. I don’t know, but going off chemo may give me a few months of relief from side effects. That would be nice. Already, I’m starting to feel my lips again. Lips I couldn’t feel, constant sore eyes, and plugged ears were Daratumumab/lenalidomide side effects. Since I stopped infusing Dara things have settled down. Carfilzomib has its own issues, but so far I have been able to deal with them. Whatever happens, I could still take hydromorphone for pain, and maybe even increase my dosage. I mean, what the hell do I need a brain for anyway? [Well, maybe for writing a few more blog posts!]
Then, when the time comes, I just give the Hospice Society a call. I may opt to die in a Hospice bed, but I may decide to die at home, although I don’t thing I want to put my family through that. Caregiving is tough enough as it is. It’s true that watching me die might be okay with them. I don’t know. We’ll have to discuss it. MAID is definitely an option. We have discussed that.
I, along with many of my siblings and relatives, sat around and watched my mother die in her bed at The Dufferin in 2018, the care home in Coquitlam she lived in for many years with my father before he died in 2007. She had dementia quite badly for the last few years of her life, and as she lay there dying she had no idea about anything, which is consistent with the last 25 years of her life. The nurses just kept pumping morphine into her veins. That kept her quiet. I suppose I could tolerate an ending like that, but I don’t have dementia. I would probably be conscious and sentient until the end. That’s fine as long as I got the morphine too. I’m not a big fan of pain.
I told my local GP/oncologist that I may go for a second opinion. I may. I may not. Probably not. It all depends on how I come to accept my end times. I find it hard to even think about death and dying. It doesn’t come easily to my imagination. Oh, every once in a while I lay in bed just before falling asleep in the evening and I think “What the heck? When it’s done, it will be done. No regrets.” Then, I get scared. I imagine myself in a cardboard box on my way to the crematorium on the hill. That’s fine, but I need to know that I’m really dead before that happens. I’m not keen on feeling fire on my skin. Of course, I’m being silly. I will definitely be dead by then. My box is on a conveyor belt. There are a couple of bodies ahead of me laid out in fancy coffins. They’ll burn real good! I’ll have to wait to get turned into ash powder. But it will happen. Later, someone will give my family a package of ashes that will have been me. I don’t care what they do with it, but I hear that the family has a cemetery plot in Vancouver. My wonderful niece arranged that. So, that’s it.
Goodbye life.
PS: I’ll write my obituary sometime. Not just yet. You’ll have to wait for it a while longer.
Hey Roger. I am the last surviving member of my immediate family. I have seen them die quickly and slowly and I walked all of them home. I agree with you that you are likely beyond chemical cures, but have not the strength of spirit to leave this world just yet. Please check out IANDS. Many tens of thousands of people have had near-death experiences and they don’t fear death, in fact they wish that they didn’t have to come back here. Soak up the love, be kind you yourself and everyone that loves you and know that you will be missed after you write that last blog. Everything that you would have , could have and should have done is mostly behind you. Make peace with yourself and others and go gracefully on to the next horizon. I truly believe that our spirits live on and if I am right send me a raven. https://iands.org/ndes/nde-stories/iands-nde-accounts.html. I am a person of science as well, but I still believe that we are beings of the light. Your fan, Kat
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I would be glad to send you a raven, but only if the raven approves… I explored IANDS some time ago. I don’t want to discuss it now, but I have my theories about it (as others do too). Anyways, take care of yourself on your beautiful island.
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Of course. Thank you for sharing your posts. I learn a lot from ypur writing. We don’t have to agree. I dialogue with many people who have beliefs and opinions that are different than mine. I have something to learn from everyone. You are in a very rich space right now. Perhaps not where you would wish to be but I admire you for being a teacher and a leader. I am going to a memorial for Father Charles Brandt tomorrow. He was always just Charles to me as I have zero faith in the Catholic Church. Then on to Bute inlet land of grizzly bears and high horizons. You can come along via Facebook if you like. The salmon are coming back and the bears are back too. Kathryn Lysack Jones on FB . Enjoy this Srptemberfresh day. Your fan K.
On Fri, Sep 9, 2022, 09:24 Roger Albert – Always a Sociologist: Now Living With Myeloma comment-reply@wordpress.com wrote:
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Thanks Roger for everything. I appreciate you sharing your experience. I missed seeing you at the social planning meeting earlier this week for your leadership, calm steady hand, and experience. I’m so grateful for all that I have learned from you and others. Big hugs.
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Well, I always appreciated your tenacity. I hope you will carry on with your association with the CVSPS. I can’t, and we need younger people to take up the slack! Keep on keeping on!
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You may think I am crazy, that’s OK big brother! I left Van so long ago because of the fact that I am an Empath. I know you guys would accept it if I said I was guy. But not an Empath. So I left. I have recently ascended another step. Which is hard but life is fun and amazing, I love all living things, I have written two books about it, and I am on the third. Both are published BTW. Anyway death isn’t an end it is a beginning unfortunately you won’t remember Roger, that is good though, unless you have a thing that you can’t forgive yourself for you are gold. If you do well you will need to find a way to forgive yourself for it. It may have happened in a past life but you always felt a responsibility for something. Any way life is just that, nothing more, death is a beginning and we’ll I would like to know the new you. Not allowed, I won’t be able to find you. I tried with Denise but she told me not to look for her. I am known as a rather gifted Empath I don’t know if it is true but don’t worry about death. It is not the end. Good luck in your new life and say hi to your new mom for me. Lol…
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Yup, you are crazy…and death is the natural end of life.
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Roger
When I read your missiles, I have such mixed emotions. Initially sad, and then inspired, …and then sad again. You have given your family and friends such a gift by writing about your process, your thoughts and your feelings. I hope I’ll be as brave when my times comes….then again, I would just as soon I drop over dead in a fraction of a second….
I think of you and Carolyn often…
Sincere thanks, Bette
>
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Thanks, Bette. The family has been great. It’s not hard to be ‘brave’ with the kind of support I’m getting.
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I imagine being struck by lightning. What a way to go. Light up the sky!
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Hello Roger. This is indeed a difficult time for you. Facing our inevitable death is no easy task. While we are fighting this capricious disease, death is still “somewhere down the line” and so we carry on. I was deemed palliative 4 months ago when I decided to end chemo ..which wasn’t really working anyway. I had run out of options. Since then I’ve undergone a “palliative” surgery… rod and pins in my femur which was about to fracture. Who knew that was considered “palliative”! The reality of approaching the end of my life is daunting. So in some ways I guess we are on the same road. Blessings,
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Thank you so much for this, Brenda. How are you feeling these days? Any energy?
There may be a possible protocol that could help me, but I’m doubting that
more and more. I’ve had really nasty side effects on Dara and now on Carfilzomib. Now, I’ve got this large tumour in my lower back that has only been there since February. If it continues to grow at the rate it has been, it will be huge in no time.
I’ve pretty much decided to get my blood checked this coming Monday, then get one more infusion on Wednesday before deciding what to do. If the Carfilzomib isn’t working, then I will definitely go off of it and Macpherson says I really have no other options.
I’m not afraid of dying, but I want to do it on my own terms.
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Yes I understand that especially since we now have choices we didn’t have before…ie MAIDS. I still have reasonable fluctuating energy. On sunday I am off to Victoria for 5 days of radiation on the surgery site as well as on 2 lesions on my sacral area. All of this is “palliative”. I’ve decided no more invasive measures although the rod and pins are giving me some mobility which is useful…even at this stage. Wishing you well Roger. What a road we are trudging along!
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Hi Roger: More good writing and sharing from you. I like your candid approach to this subject. Many just shy away from the big mystery. As one who has studied Buddhism for years, I have explored the ideas around death and dying. We all want to avoid pain and med’s can certainly help with that. Suffering is primarily of the mind and that’s not something most of us are good at managing. Its rather abstract and mostly in the imagination. My primary buddhist practice has a close look at that….. but it’s not something I can share in any detail. Briefly, it has four sections. The first one begins when I’m going to bed. Going to sleep corresponds with dying (symbolically) so it is the first section. The second section corresponds with the dream state (or the bardo) The 3rd one corresponds with awakening… or acquiring the enlightened mind. And the fourth secton is being awake in an enlightened state. These 4 states are all bardos in Buddhist thought. The practice is called Vajrayogini. info can be found on the internet. Zazep Rinpoche is a good source of info if you’re interested. Also -many years ago, Leonard Cohen with the NFB had little film…… I think it was called the Great Awakening. It’s quite good and quite accurate as the story goes. Thank you for sharing your journey with us. I also am glad that the MAID process is available for us if we choose it.
Take care.
Ed Brooks
On Thu, Sep 8, 2022 at 1:19 PM Roger Albert – Always a Sociologist: Now
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Thanks, Ed. I’ve not embraced Buddhism, but there are many Buddhist ideas I share with the discipline and I have read a fair bit about Buddhism. I remember Cohen’s The Great Awakening but I’ll track it down again and check it out.
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A native elder once told me…. Ask how, not why, not when, not where, not what……. but how.
Ed
On Fri, Sep 9, 2022 at 1:25 PM Roger Albert – Always a Sociologist: Now Living With Myeloma comment-reply@wordpress.com wrote:
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I would want a 2nd, 3rd and 4th opinion, then most likely ignore them all and rely on my gut–literally in your case. Strangely enough, I was thinking about you today as I learned of the Queen’s death just two days after the ceremonial installation of Liz Truss as PM. Of course, it struck me that her sense of service was so strong right up to the end. While your talents are burning so bright that I imagine you in hospice with your notebook! As long as you are not only sentient, but overflowing with so much to say, it can’t yet be your time. So, keep these blogs coming. Please, mon ami. You have been gifted with le mot juste, so keep on giving them back 🙂
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Thank you, Marilyn. I’ll keep on keeping on! I’m not sure what else I would do except sleep.
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It’s interesting what they consider palliative. I guess that’s all reasonable.
Have a good trip to Victoria! And please stay in touch!
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Big brother perhaps I am crazy. Quantum physics has my back though. I have studied the basics for quite some time. And the proof is in pudding. I have no intention to convince you or anyone else. My perspective is my own. Science and metaphysics are not so different from reality, if that exists in a general sense. My third book I trying to tie it all together. I love you Roger, and only hope for the best. For you and Carolyn. Long discussions are likely passed, but thinking and observing never loses its appeal. ❤
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You take care, Guy.
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