I’m writing today to let you know what’s up with me. I still don’t intend to embark on a regular program of blog posting, but things have changed for me over the past while and I thought I’d let you in on the changes to my situation. But first, a bit of a re-cap.
When I was diagnosed with multiple myeloma in early October of last year, I was in pretty rough shape. It became clear to us then that I had had myeloma for some time before, probably for years. Over the past few years I’d had to back away from a number of volunteering gigs because I was too exhausted most of the time to be of much help to anyone. I was not much help around the house and property either. I stopped painting and drawing, and sculpture was out of the question. It was no fun at all. I felt rather useless. And because there was no diagnosis for years, I questioned my own sanity and vitality. The cancer diagnosis was patently not what I had hoped for, but it was an explanation for how I felt and for the pain and exhaustion I had experienced for years before. In some ways, I felt a sense of relief.
Then, in November, 2019, I became a full-time cancer patient. Myeloma became the main focus of our lives. We read everything we could about it online. We went to Victoria for a consultation with the oncologist I was assigned to at the BC Cancer Centre. That trip turned out to be a disaster. Aside from the myeloma that was causing me a lot of pain and distress, during that trip to Victoria I had to deal with a flare-up of a chronic degenerative disk problem, and of the arthritis in my neck I’ve had for years. I can’t tell you how discouraging that was. I was practically an invalid to the point that we asked around to see if anyone had a wheelchair we could use because we figured I’d need one.
The chemo regime I was initially put on caused me to get a huge rash all around my midsection, so my oncologists decided on a different cocktail of meds. This was quite discouraging because I wondered if there was any cocktail of chemo drugs that would work for me. Finally, my oncology team settled on the set of chemo drugs I’m on now. I’ve just started my fifth five week cycle of chemotherapy. I’m scheduled to continue on this program at least until late summer.
At first the chemo drugs kicked the shit out of me. By that time, I was also taking a low dose of hydromorphone, a synthetic opioid, to deal with the pain, and I had to take Dulcolax to deal with the inevitable constipation brought on by hydromorphone. My peripheral neuropathy was extremely annoying in that my hands and feet would constantly go numb and tingly. My whole pelvic area seemed to be on fire at times.
The first three cycles of chemotherapy had me questioning whether or not I should just shut it down and deal with the consequences. I couldn’t see myself living for any length of time in this state of pain and exhaustion.
Then, something changed. I don’t know if it’s because my body has been getting used to the chemotherapy or that the meds have been very effective in dealing with the myeloma. Over the past while, my bloodwork has gradually indicated a complete attenuation of myeloma symptoms. My blood seems to be back to normal and the signs of myeloma have all but disappeared. That doesn’t mean I’m cured, by any means. It just means that I may be going into remission. How long that might last is anybody’s guess. When the myeloma comes back, my oncologist will put me on another course of therapy. That could carry on for years to come.
So, lately I’ve had a surge of energy and I’m now able to do things! Oh, I still have pain and I still get tired, but I can do stuff! For instance, I’ve been able to help Carolyn build boxes for her garden beds and yesterday we rebuilt part of the structure that holds up the massive wisteria we have that surrounds our deck. I even used my chainsaw! If you had told me in January that I would be using a chainsaw in April I would have laughed in your face.
So, yes, I’m still sick with myeloma, but I’m now without major symptoms of the disease, and the hydromorphone is dealing with the pain I still have and will continue to have for the rest of my life. I can live with that. Basically, I’m feeling well. My body seems to be tolerating the chemo drugs much better than over the past few weeks. Some of the side effects of the chemo drugs are quite nasty, but I know how to deal with them now. I’ve become a proficient cancer patient.
Now, if we could only get rid of MARS-Cov-2, I could, we all could, get back to some proper socializing and I could hug my grandchildren again. The truth is, however, that my life hasn’t changed much because of the pandemic. I’m highly susceptible to infection because of the chemo and I can’t be around sick people for that reason. Covid-19 has just made it so that we have to be extra careful.
So, I’m cleaning up my studio and my shop. I’m looking forward to doing some painting, printmaking, drawing, and sculpture. I’m working towards restoring our canoe. The fact that I can even contemplate these things has changed my life yet again. Overall, I’m pretty happy with the way things are going.
The situation in the world is another thing entirely. The irrationality of modern neo-liberalism in the face of climate change and the pandemic continues to cause me consternation and worry. I hope we, as humans, can collectively get our shit together and build a more modest future, one in which we are in tune with each other and the natural world of which we are a part. I know so many good, caring people, but the structures of global capital run deep and are highly entrenched. Ignorance and denial still characterize large segments of the population. Even with the majority of the population consisting of good, caring people, I have no idea how to fight these massive reactionary forces. Covid-19 has shown us that massive changes is possible and desirable for our quality of life, although it’s probably not a good idea to leave desired social change to the recurrence of deadly pandemics.
It is heartwarming to hear about such positive news from you Roger. I will continue to say a prayer for you and hope that you enjoy long term good health. Hugs to both you and Carolyn. 🥰
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Thank you, Pamela. Things are definitely looking up!
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Just thrilled to hear that you feel you are back in the land of the living. What an inspiration Roger. Because or you, I now know that if I should ever have cancer if I just continue ‘with the program’ even when I’m miserable, I might too get to a stage of remission.
thanks for the good news. Bette
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Hi Bette. It’s tough at times to sustain the assault from the chemo meds. They are truly toxic. However, if I have to put up with a few months of pain and suffering to get a few years of decent quality of life, so be it.
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Thank you for doing all this writing Roger. You have adjusted my overall attitude with this last good news post. I have known many people that have undergone chemo and radiation, and reading about your experience in such detail pretty much solidified my position that if it ever comes to me, I don’t want to go through it.
My sister, after her second brain tumor surgery in 20 years, just this February, is struggling with her oncologist desire now to put her through both radiation and chemo, for her first time. Her life is quite different from yours and she thinks if she got another 20 years and made it to 80, without these awful treatments and the logistics required, she would be good with that.
I can only hope that by the time cancer of any kind finds me, my life will be mostly complete as it was for my father, and my heart will give out before the cancer is the major concern. But your situation and the success of the chemo makes me question my lack of ability to tackle the treatment paradigm of our time. Perhaps I will share your story with my sis. I sincerely hope your remission sticks so that you can keep inspiring me for many more years to come.
T
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Thanks for this thoughtful comment. Chemo is no picnic, I can assure you of that. To embark on a course of chemotherapy means that one’s focus is absorbed by the side effects of the drugs. We become obsessed with our lab results and fret if we see an adverse trend in the numbers. For months most of our conversations revolved around chemotherapy and oncology. Now our conversations are split between chemotherapy, Covid-19 and the state of American politics. Oh well. I really am okay and happy to be alive. Living is a habit and I’m attached to my habits.
All the best,
R
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Great news! The one about you’re health that is not so much about the ignorance and denial.
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Indeed! Thanks for your comment!
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I am so heartened to hear you are feeling better Roger. Your body has adjusted to the chemo routine..yay! And yes you have indeed become a proficient cancer patient…a resourceful one at that. Well done Roger.
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I am very happy to hear you are feeling better. It has been a rough road Roger. Chemo is certainly for the strong of heart and mind! You are indeed a proficient chemo patient. Well done to you. After all you have been through it is heartening to know Myeloma is responding to the chemo.
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So, this is the second comment you’ve made recently, similar ones. Did you think the first one didn’t go through. That happens with WordPress all the time. You never really know if a comment has gone through or not. In any case, I am feeling better overall. I’m able to do a lot of things I haven’t been able to do for a long time. Today, however, is my chemo day and I’m feeling shitty and more nauseous than usual. It seems that every week brings new symptoms and surprises. Myeloma is responding to the treatments. I’ll have to thank Dr. Yee for that although I have no idea how closely he follows my file. Thank you so much for contacting me. I appreciate it. I can’t make the Zoom meeting tomorrow. I have a meeting with an old friend I’m helping do a survey. I’m expecting to be at it most of the day. I’m enjoying the bits of sun that come through now and again. I hope there’s enough sun to make our pear and plum trees happy. Anyway, thanks again, Brenda.
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