39 Two Days in my Diary

8:00 AM Thursday, March 19th.

On Wednesday we went to the hospital to see my local oncology GP. We reviewed my lab results and my progress to date and he was very positive about how things are going. It looks like more chemo for me until at least September, then off of them for three months after which I get bloodwork done again to see how things are going. If everything is okay we carry on for another three months. If the myeloma is again active, they’ll put me on another course of chemotherapy. He said that we should consider my disease more like a chronic disease, diabetes say, rather than as a virulent, deadly one. So, that’s all good, but I still have lots of chemotherapy ahead of me and that’s no cake walk.

In this post, I want to give you a blow-by-blow idea of what happens to me after I take my chemo meds on Thursday and Friday. I would love to hear from any of you who have had chemo so as to compare our experiences.

I have just made it so that anyone can comment on my posts. You don’t have to be a registered WordPress user to comment! Yay! Give it a try please!

Today is a good day so far. That will change in a while when I get my chemo meds. Oh, I have some joint pain and fatigue, but that’s my new normal anyway.

11:15 AM

Off to the hospital to get my chemo meds for the next four weeks along with a bortezomib shot.

1:20 PM

This time they wouldn’t let Carolyn come with me to the Cancer Clinic so she waited for me in the car. That’s because she had a cold and they’re rightfully paranoid about Covid-19. We drove home from the hospital carrying my load of pills to take for the next four weeks. I take 13 cyclophosphamide and 5 dexamethasone once a week on Thursdays. We had a bit of lunch a while ago and I’m starting to feel the effects of the meds, but not intensely yet. Tingling body is always where it starts. Today I decided to sleep off the afternoon hoping to cut off some of the worse effects of the meds.

4:30 PM

I’m actually feeling pretty good after sleeping for most of the afternoon. I’m lightheaded, that’s for sure, more than yesterday, so it’s started. The dexamethasone is starting to take effect. I’m feeling tingly all over. It’s still too early to assess how dex will affect me today. The dex effect has changed over the past few weeks. My body seems to be tolerating it better. I’m not getting the crazy twenty coffee high I was getting earlier during the first two cycles of treatment. My stomach is unsettled as it has been for the duration of my treatments. It’s a very odd sensation. Urination is still a problem although not as severe as early on in my treatments, so we’re thinking that the antibiotic might have done something, but we’re not sure. I checked to numbers from my last blood tests and my ferritin levels have dropped from over a thousand to now under six hundred. That’s great news because it does indicate that any inflammation I have had is decreasing. That said, my Lambda Free Light Chains (you have them too) are increasing and I’m not crazy about that. We’ll see what my next lab tests show. If they go up some more, I’ll be really pissed.

8:00 PM

Dex is starting to do its thing. ‘Sleep’ will be interesting tonight. I just took my usual bunch of pills but I’m taking two Benadryl tablets to counteract the usual itching and swelling around my bortezomib injection site. I’m also taking a Dulcolax tablet to counteract the constipation that comes with hydromorphone. That seems to be working. The burping has started but isn’t severe yet. That will come tomorrow. I’ll save more entries here until tomorrow. I’ll be in bed soon in any case.

8:00 AM Friday March 20th

So, last night was a dex sleep meaning that it’s a sort of sleep or at least a state akin to sleep. It’s hard to explain. I feel that I haven’t slept at all. Looking at the clock every fifteen minutes or so seems to confirm that but I may be dreaming all of that. I don’t know. I think the Benadryl is helping me counteract the dex, but I can’t be sure. I’m wide awake this morning having got up at 6:45 after Princess (the cat) came to me screaming for food. I ignored her, but it was too late. No point in staying in bed. I’m having very interesting experiences with pain lately too and this morning is no exception. I have pain spiking here and there but nothing constant. It usually comes when I move so I just sit still a lot! I know I have to get up and move around, and I do, but I then pay for it later. Last night I had no issues with my peripheral neuropathy (extremity pain and numbing) which is unusual. Usually peripheral neuropathy keeps me awake or tossing and turning. I’ll do more stretching today to see if that helps with that in the coming week. I’ve been doing a fair bit of stretching for my neck and back pain and that seems to help my peripheral neuropathy. Burping has resumed. Fuzzy head…not too severe yet, blunted by the dex. I find it fascinating to observe what’s happening to my body as I go through cycle after cycle of chemo. The effects change every time, sometimes drastically, sometimes almost imperceptibly. The interactions between the various meds I’m taking make it difficult to trace drug to effect. I’m trying to relax as much as I can. Stress doesn’t help. I think I’m doing okay on that front.

10:30 AM

The dex is starting to really kick in now. Elevated pulse rate and feeling very lightheaded. Overall, though, because I know what to expect I’m not getting stressed out. I feel it’s so important for people in chemo to very carefully track the effects. It’s so important to read the information sheets that come with the various drugs we take. In the case of my urinary issues, I called my GP with what are classic urinary tract infections (UTI) symptoms but only after Carolyn read the information sheets urging us to call in if we have signs of UTIs. We have to keep on top of it because I can’t afford to get an infection of any kind. Now I’m getting the shakes too. Par for the course. Time for tea.

12:25 PM

Well, the dex has kicked in with a vengeance. My cheeks are flushed, I’m hyper yet exhausted, unsteady on my feet, but we’re going to have lunch up by our pond. Yes! I can still write, but who knows about later today or tomorrow. Then, I may be good only for watching YouTube videos about people rebuilding their old sailboats, or doing woodwork, sometimes both. It’s all very exciting. I haven’t seen any videos yet on watching paint dry, but it came close on a video about somebody applying bottom paint to their sailboat a couple of hours before it was to go back in the water after being on dry land for weeks.

8:00 PM

Dex is still with me but now I’m feeling really exhausted so I may sleep better tonight. I generally sleep quite well. Dex nights (Thursday nights) are exceptional. I’ll be taking my meds now: Hydromorphone, Benadryl, and Dulcolax. It still burns when I pee and I have to pee often. My eyes are burning but that’s probably as much an effect of age as it is of the chemo. I’ve got the shakes still, probably until well into tomorrow. Pain is manageable. Exhaustion inevitable. I’ll go to bed in an hour or so, do a bit of reading then sleep (I hope). Goddamn burping! So annoying.

AND please comment! Especially those of you who have had chemo treatments in the past. You can do so now without being a WordPress user.

16 thoughts on “39 Two Days in my Diary

  1. Your post brings me down to earth. I’ve been down the COVID-19 black hole on facebook. This morning I woke up with the kind of headache that lets me know my TMJ dysfunction was active last night. So after this I am done with facebook for the night. I’ll switch to a relaxing Icelandic murder mystery on Netflix.
    I have been on meds that made me feel way shittier than I did before them, but nothing like what you are experiencing.
    I think about you both every day. Glad you continue to get outside. I love the return of the birds this time of year.


    1. Carolyn’s been working in the garden. It will be spectacular this year…but we won’t be in the Garden tour. She got the pond up and running. I love the sound it makes. I look forward to spending a lot more time outside. These last days of March have been amazing. Take care of yourself. A good Icelandic murder mystery, eh. We were thinking of watching Young Frankenstein but I decided it’s bedtime any minute now!


  2. For your burning eyes, try LIPOSIC eye gel (Bausch + Lomb). It’s not a thick gel, very soothing. Recommended by Dr. Elaine Kerr (FYI Doctors, Courtenay). Other drops can irritate. It may help.


  3. I recall my mom saying the chemo made her exceptionally fatigued. It was hard to get around. The drugs After caused a lot of deep bone pain. She did get permanent nerve damage from the chemo as well… so she has to be careful of the shoes she wears or it hurts.


      1. It is a long arduous process to endure for sure. I was glad Martin just had his kidney chopped up with his cancer and no radiation or chemo. Mom had the radiation, chemo and then meds for quite some time after to eradicate all estrogen from her system.


      2. I had the same surgery as Martin in 2002. Same for me at that point. Cut and remove. It’s not the same for myeloma. It gets me right in my bones and is incurable. Six more months of chemo…and even then, i’m maybe in remission, nothing more. I didn’t know your mom had had cancer.


      3. Yes she had breast cancer a few years back. Just finished her last meditation forgot I believe. Long process. But not the same as yours. I thought when you had kidney cancer they did more than surgery for some reason. Bit yes that was a relief that he just had that. I do hope after you go through all of this hell you can have a remission state.


      4. Remission would give me a reprieve from death, but I’ll not escape the inevitable. BTW, I dug out my copy of Norbert Elias’ book What is Sociology? His analysis of what constitutes a human being in this text is not conventional in the least. I’ll have to write a review of this book sometime. I hope your mother is doing okay now. A while back I asked you if Martin was having any residual pain or discomfort around the site of his surgery, especially along the incision scar. How’s he doing?


  4. I have “dry eyes” from all the chemo and use Systane Ultra drops several times a day to soothe the burning. also was advised by my ophthalmologist to use a fairly warm damp cloth on my eyes for 4 minat a time a couple of times a day. It does help.

    I also have neuropathy in both feet and now experience some in my finger tips…wondered why I was dropping things! R Lipoic acid tablets have helped some.I have had neuropathy for some time now. I think it would be worse w/o it.

    I found the cyclophosphamide made me quite nauseous….the meds to counter act that made me very constipated…you can’t win! sennocot and Dulcolax to the rescue.

    I just can’t do Dex anymore so this time around I talked my Oncologist into giving me Prednisone instead. I have had more initial fallout re side effects from the Darzalex, but I knew that was going to happen since the Prednisone is 6 x less strong than the Dex.however….I am not in the looney bin!

    I think you are doing well…I know Roger….small comfort…handling all these side effects. It can be very difficult balancing the need for chemo and dealing with the subsequent side effects.


    March 24 @3:00pm the Lymphona Leukemia Society has a webinar Living With A Blood Cancer

    March 26 4pm myeloma Canada has a webinar as well Covid 19 and Multiple Myeloma

    March 27 1-2 pm Linda has set up our Myeloma Support group meeting via teleconference. Details from her to follow..


    1. Thank you, Brenda. I did get this comment on my blog. Thanks for the comments. Sometimes it’s tempting to think I’m the only one having the kinds of debilitating side effects I’m having and sorting out what drug is responsible for what side effect. I know that’s not right, but I do feel alone sometimes. Carolyn is great and because she has bad arthritis she understands. That’s a comfort for me. People are constantly telling me how good I look. I don’t know what they expect. I don’t really like going into long explanations. I just tell people to read my blog!


  5. All the best of luck to you. I think you deserve it even if luck is, by definition, something that devolves by chance, not merit. I’ve enjoyed some of the earlier posts you’ve left here. They mean quite a bit in a world I suspect is losing the ability to think past its politicking long enough to assess the situation it’s gotten into.


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