I’m finally able to write a few paragraphs. My neck has been such a problem lately that I haven’t been able to write much or draw and paint much either. It’s because my neck gets spasms easily if I look down at the computer screen for too long. Ten minutes at a time is about all I can handle. However, I remembered that acetaminophen works quite well for neck pain. I took a couple last night for my arthritis and degenerative disks in my neck and that seemed to help. I took a couple at around 8 AM this morning and now, although I still have neck pain, it’s manageable. We’ll see how long it works. I want to go outside and play.
Funny how I used to take acetaminophen regularly for some kinds of pain and it worked marginally well. Then I forgot about it when I got into stronger meds after my cancer diagnosis. Hydromorphone is my go to pain reliever now, but I’m also taking a low dose of gabapentin on the advice of my palliative care docs.
Palliative care docs are specialists in pain management. They often get linked with end-of-life care, but their mandate is much broader than that and is tied to pain management generally. We talk every week, usually on Wednesdays always working to fine tune my meds to balance pain with my need to be able to do some activity. Of course, as my pain doc told me this week they could easily make me pain free. I’d be pretty much catatonic though so we’ll probably save that for when I’m closer to dying. No, the objective with my pain docs is to balance pain management with quality of life.
I must say that lately it’s been a bit of an odd dance. We tried nortriptyline but it made me excessively sleepy without doing much to lessen my pain levels. We tried a really low dose of gabapentin. That hasn’t seemed to have worked very well so we’re now increasing my dose of gabapentin to a bit of a higher dose to see if that makes a difference. That’s always on top of my basic hydromorphone slow release tablets that I take morning and evening.
I suggested to my pain doc yesterday that I should just go off of all pain meds to just see what happens. She said that I probably shouldn’t do that because the pain would be unbearable without some intervention. I have to agree, but it’s frustrating. It’s hard to know which med is doing what when I take a cocktail of meds. It would be simple to back off to just one med, but that wouldn’t work either because as I noted before, neurological pain is different from muscle pain with is different from bone pain, arthritis and disk disease. I need different meds for the various kinds of pain I have so a cocktail is required. Simple would be nice, but it’s not practical.
So, I sit here now banging away on my computer keyboard. My neck pain is manageable but really annoying. I’m hoping the increased dose of gabapentin will deal with the neurological pain I have in my legs, but we’ll see. It takes a while to kick in. I’ve had two MRIs this week. The first one was on Monday and imaged my lower back. The one yesterday was for my upper back and neck. I’m not sure how they may help with diagnosis or with determining what drugs will work for me, but at least they will give us a good baseline for subsequent tests.
I’ve been thinking a lot lately about the time I have left. I have incurable cancer so it’s like I’m on death row waiting to see if my next appeal (chemo course) works or not. I’m technically in remission right now. We’ll know in January how that’s going. I’m scheduled for blood tests on January 5th, the day after my 74th birthday. That will mark seven months that I’ve been off of chemotherapy. I hope those little bastard myeloma proteins take a long vacation and I can stay off of chemo for a while longer.
Inevitably though, chemo won’t work anymore and that will be that. Bring on the morphine and call in hospice and MAID people at that point. When I get to the point that I can’t DO anything anymore, I will probably welcome my exit from this mortal coil. The thing I regret is putting my family through a long, prolonged, slow exit. Maybe it would be better to pull the plug sooner than later. But I’m not ready to make that decision. So, we carry on, balancing meds, counting on chemo to beat back the myeloma proteins when they get out of hand, and hoping for the best.
I haven’t written at all about politics lately. I’m tempted to, but my neck pain may decide how much I can write, draw and paint. Politics is fun, but it’s not at the top of my list of priorities at the moment. Cancer has a way of focussing my attention narrowly on my life and possibility. I’m still interested in BC politics, Trump, etcetera, but they just aren’t centre of mind like they used to be for me when I was teaching. The pandemic is close to mind too, of course. I’d love to see my family as much as I can. Covid makes that impossible. Cancer and Covid are dominating my life right now. Not the best of scenarios, but I do have Carolyn to commiserate with and to share my Covid isolation.
I’m not sure how we can talk about happiness in the circumstances we are in. I’m not happy about any of this shit but that doesn’t help much either. It’s just that how in hell can anybody be happy right now?
11 thoughts on “#70 Fun With Meds.”
Fight Back you have been an inspiration in how you you share. I will always remember how you have been a fighter but try not to be when you are too much pain.
On Thu, Nov 26, 2020, 2:31 PM Roger Albert – Always a Sociologist: Now Living With Myeloma, wrote:
> Roger JG Albert posted: ” I’m finally able to write a few paragraphs. My > neck has been such a problem lately that I haven’t been able to write much > or draw and paint much either. It’s because my neck gets spasms easily if I > look down at the computer screen for too long. Ten minut” >
Don’t worry, I’m a fighter but I know that there is an end to everything and sometimes fighting is just not the right strategy. I’ve been in a lot of pain recently, enough so that is has prevented me from doing the things I love. However, I’m hopeful that my new med combination is going to work. Wish me luck!
Pain is such a hard balance with medication. Much harder with more severe pain, I imagine. I have gone off my opiate because it wasn’t helping but they also didn’t want to increase the dosage so I didn’t see the point of staying on it. But I have not gone back to the pain clinic yet to discuss other options- not really because of the pandemic but because I am just so ill from not being on vertigo medication that I can’t really function. So hard to do anything really but I should at least call them and attempt a call appointment or something.
So my compromise for pain management has actually just been cannabis. And that is tricky because I do Not want to be stoned… so just enough to dampen the pain but not enough to be stoned. The idea is such that I can still function. But since my vertigo meds are being tapered off, well, that was moot. Meds suck. As soon as they are altered a teeny bit we can go from able to do stuff to laid out all of the time. So I do not recommend trying to go off all the pain meds either- I think that would also in your case be unbearable but I agree it is very hard to determine which med is doing What. In my case, often, it is a case of going off a lot of them and seeing what my baseline actually is and then trying new ones from there but that just is not an option with severe pain. It is a basic quality of life issue that they want to help maintain.
I understand completely not being able to do the things you love. I am in the same boat. Not from pain though, although certainly, that is always a factor on when and how I do things. It inhibits things but doesn’t stop me altogether. But the vertigo sure as hell has been stopping me altogether. Just getting up and walking to the bathroom is a marathon event. I despise the fact it has taken away all the things I love to do and use to distract myself from the pain and cope. It has been putting me in a bit of a mood really because all I do is lay here… unable to Do anything. But I can slightly function early in the morning enough to do minor things. This is when I am quite dizzy but not out of it yet. But it is a very small window. I don’t like the fact that I exist in this small time frame. And the rest of the time I just rest and recover and rest and recover. So definitely quality of life is a big issue. It is hard not to be upset by it really. But I carry on. You carry on. We persevere. I would like to be able to have those meaningful things back though.
Hi Nikki. Why is it that we are so ‘blessed’ by crappy chronic pain? That’s a rhetorical question, of course, but sometimes I wonder. I didn’t get into a lot of pain before I was in my 40s. I regularly ran 10ks. I worked out. I had lots of energy. We went camping and canoeing all the time.
I’m going to try canoeing again and maybe even camping if we can set up the trailer with electric assist this and that. Might just work. Problem is I keep getting older so I can only expect deterioration of my body. And, obviously, the myeloma doesn’t help nor does the chemotherapy used to fight it. Oh well. As you say, we carry on.
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I’ve had chronic pain a long time but for a lot of that time it was still goof quality of life. When the pain goes up though you sort of just start to struggle to live in the pain gaps and moderate and pace… which you do but life gets a little bit- smaller. Not that it is a bad life, just a bit smaller. And then when it goes up again, then quality of life really matters a whole lot. Intervention is needed to get to that level of basic functionality so we can still enjoy the pain gaps with pacing and moderation. It is still a life, just more mellow, more paced, more careful. More consideration needed. I have always found things that bring me joy to do, just maybe I do them differently. Although there are times like now where quality of life is low, I know these times do not last and it will get better when treatment is adjusted, so I rest and recover and wait… and wait. This limbo period I do not like. It gets to me. My mood suffers. I feel useless. But I just remind myself it won’t last. And I still can carefully, ever so carefully find small bits of time to do small things. I think other people would see that as a very sucky life, but, well, when you live you learn to savor a lot of simple joys.
I wish we didn’t have to deal with all this pain though. I truly wish we didn’t. But when we have no choice in the matter we have to find ways to live in there somewhere. And then rest and recover. And then live. And then rest. lol
Chronic pain is a bitch, that’s for sure. I started having pain that wouldn’t go away sometime in the early 90s. When I had my kidney removed in 2002, that left me with a legacy of back and side pain which still plagues me. Now, chemotherapy has left me with even more pain, but of a different sort. But, I take my meds. I do as much as I can. I have a pension so I don’t have to worry about that. I have a wonderful home and a great Carolyn spouse. Those things counterbalance the pain to some extent. My palliative care docs are great too, as is my GP and my oncologists. I’m in good hands. I have nothing to complain about.
Yeah but every once in a while I do really want to complain. 🤣 I suppose we can have a rage scream at the gods every once in a while. No harm in that. The neighbors might think we are a tad weird though. But… might get some frustration out! Chronic pain does suck in all its forms and has a massive impact in many ways… still I remind myself, like you, of all the other aspects of my life that do not suck.
I am glad you have good pain management right now. I had a hard time when Martin had cancer and then mom. I do not like to see suffering and I do not like thinking about losing anyone. And I definitely do not want anyone to have to endure intolerable pain. So pain management and quality of life mean everything for every moment of time and every moment of happiness. I despise cancer. And I loathe chronic pain. As long as your pain continues to be managed though that is good, I hope. As much as pain ever can be anyway… to a tolerable level so that you can enjoy the things you love to do some of the time. But I know the cancer treatment itself can be so exhausting and have its own side effects. It is just all around a complicated balancing act of medication , side effects and quality of life that I cannot comprehend because I have not experienced it on your level.
Combine chronic pain with cancer, arthritis, degenerative disks along with old age and the weakness that that entails and you have my life. That doesn’t mean I don’t laugh at times and find Tilly’s antics funny. I do. It is frustrating, however, and I don’t always maintain my cool. Ask Carolyn!
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Sometimes I don’t due to my level of pain so I think that is entirely understandable. I tend to laugh a lot and it masks a whole lot really but there are days, just at a certain point, when I tend to be much more silent, immobile, and cranky if disturbed. Pretty much just need to wait it out on those days. Martin knows that for sure! If I am not smiling and joking around it is a Bad Day and just leave me be. lol
I guess I’m like that too. With me, Carolyn says that I don’t communicate very well. No, I don’t. Don’t expect me to. All my energy is taken up with dealing with pain and trying to decide if I should take more meds or not. I can take a lot of meds if I want to. Doctors don’t mind if I take lots of meds.They leave me at messed up, though, often when I want to do something. It’s frustrating.
I don’t communicate well either I’m told. But I don’t like to feel like I’m complaining I guess. So I just prefer to deal any way I can.
That would be very frustrating to be able to take medication you want but then not being able to Do things. Because that is the balance you sort of want. That perfect balance of not the pain and functional.
I get frustrated mostly that meds suck. Lol. Nothing ever works or I can’t be on it for one pain because it will cause the migraines to get worse. But really do not want to aggravate the migraines so I understand that point. I know that painkillers can cause people with migraines to get into a constant migraine state… literally constant pain. No thanks!
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