Yesterday was a miserable day. I wasn’t able to sleep the night before, due both to simple discomfort and distractions and to pain. Yesterday, I tried to sleep during the day with little success. I couldn’t get warm, no matter how many covers I pulled over my body; I felt like I was destined to be cold no matter what I tried. Even sitting in front of the fire place was futile. I felt sufficiently miserable that I began thinking of whether I could long continue to tolerate the roller-coaster and how I might make it stop. Anything would be better than constant pain and fatigue and shortness of breath.
One day, I feel pretty good, the next I am in constant pain and have absolutely no stamina. The lack of stamina is pretty constant, whether or not I’m in pain.
Yesterday, in the midst of anguish and despair, I felt a sense of hopelessness like nothing I’ve ever felt. I felt like I was becoming an albatross around my wife’s neck. If this was the best I could expect, what would life be like for her if it gets worse for me? I can’t begin to adequately describe the depths of my thinking. I contemplated the possibility of just getting in my car and driving away. Far, far away to a place where I could just disappear. I’ve not felt a sense of despondency like that since periods of deep ennui when I was in college, alone and in emotional pain and willingly contemplating the possibility of buying or stealing enough pills to enable me to end it.
Today is better. I’m not planning any celebrations, but today is much, much better. Yesterday, during the worst of it, we decided we should cancel New Year’s dinner with a couple who had invited us to join them. And I opted to plan to stay home from the musical program at church today. I simply couldn’t imagine trying to get up and get dressed and attempt to enjoy music and photographic art (which was the plan). So I decided to stay home. My wife had invited our friends next door, thinking they would enjoy the program, and they accepted; she left a while ago.
I really don’t understand why my mind (and my body) is taking me on such a grotesquely painful journey of late. Not long after I got home from my surgery, I felt very much like I was on the mend and I could see a point at which I could look back at my experience as an ugly but survivable detour. That sense seemed to have left me, replaced by a sense that the removal of a lobe of my right lung has irreversibly and permanently altered the course of my life. It probably doesn’t help to do a Google search for “quality of life after lung lobectomy,” and then read in detail (and between the lines) the results. The bottom line of such an endeavor was a sense that much of what’s written suggests a tolerable quality of life after surgery for those unfortunate fifty percent of patients who suffer chronic, lifelong post-surgical pain. That, coupled with the horror stories I’ve heard and read about the after-effects of chemotherapy and radiation, tends to bring me down. (Side note to Bev: I know, Bev, and I am glad you’re there to offer a real-world perspective.)
Today, as I look at and write about my emotional reactions to what I can only surmise is a normal, natural response to my surgery, etc., I can be dispassionate about it all. I can be an uninvolved third party, examining the situation from a distance. My distant assessment is that I have simply allowed my emotions to hijack my experience, replacing analysis with fear and coping with desperation. Today, I can make choices that, yesterday, would have been knee jerk reactions to growing panic. I realize, today, that I’m only a month and a half in and that I need to give myself double that to know the direction of my recovery. And I know I have to factor in the chemo and radiation during that assessment. I read, somewhere recently, that taking experiences, even bad experiences, in short segments makes them more tolerable. I think the writer suggested that, “I can tolerate anything for thirty days…I can decide after thirty days whether the experience is tolerable or whether I must do something to escape it.” Thirty days of pain (though, in my case, it seems like ever other day I’m in pain, so it’s really just fifteen days) should be tolerable.
Yesterday, I should remember, was an especially bad day. The worst so far, I think. Perhaps it was simply a fluke. I realized, late in the day, that I hadn’t taken my vast assortment of medications early in the day. Perhaps that had an effect on me. Maybe yesterday was an aberration that I won’t experience again. When I woke up this morning, I felt so much better than I did at any point yesterday that it was like I was living in a different body. While I’m in pain today, today it’s mostly a low level, almost not noticeable experience. I can live with that. I can get used to it. While I would rather not cope with it, I can cope with it. Yesterday’s pain? I tell myself I can cope with thirty days, like the writer suggested. And I have to remember, too, that I have options. I can ask doctors what other medications or regimens I might pursue.
Today, as I reflect on yesterday and how miserable I was, I have an odd sense that it was, indeed, an aberration. Maybe I’ve crossed a threshold beyond which the pain will be more tolerable and the depression or whatever it is that seemed to have taken over my mind will slip away quietly. I know one thing with some certainty: constantly focusing on my pain, myself, my experience, my cancer, my prognosis, etc. is by itself a fatigue-inducing exercise. So I must stop. I know I can’t eliminate that train of thought entirely, but I can derail it to an extent that I can explore other things of interest.
One of my interests is (for reasons beyond my understanding) Scandinavian culture. In my fiction, I’ve written about Kolbjørn Landvik and Lina Lindström and Stefan Ruud and others from Norway and Sweden and Denmark, etc. I’ve explored Icelandic history. I’ve dreamed (in writing) about how my affinity for certain foods must be a sign of some odd connection through the dust of the universe I have to long-dead Scandinavians and their gustatory pleasures. I realize, of course, I have absolutely no real world connection to Scandinavia, but I enjoy making up stories that involve leaving the rugged coastline of western Norway in a fishing vessel, destined for experiences that might shape the future of the world. So, if I can keep surgery’s and cancer’s physical and emotional attacks at bay, I shall invest some more of my time in Scandinavian imaginizing (it’s my neologism; leave it alone).
I like to write. I think I have something to say (though just what remains to be seen). I feel a need to empty the contents of my overstuffed imagination into a container the size of the universe, climbing inside and retrieving bits and pieces and cobbling them into stories. I hope I haven’t lost my ability, through my months-long focus on writing about surgery and cancer and pain, to write interesting fiction. I suppose time and productivity or the lack thereof will tell. I feel I’m attempting to crawl out from under self-imposed emotional baggage. Today, I think I have the energy to do it.
Bev, <3
John – Alimta was just beginning to be used when Don was receiving treatments – but it was still sort of at the clinical trial level in Canada. It was often being used alone as a second line (second round of chemo after you have already finished treatments with a previous chemo drug). I knew a couple of people doing Carboplatin who found it pretty easy — powerful as all the platinum drugs are — they used to combine it with Taxol — and it was the Taxol that I think bothered people more. Interesting to see it given with Alimta. It may be a particularly effective combination. Anyhow, I heard quite good things about Alimta — that it was fairly easy — so maybe you won’t find it difficult. Don would have been given that instead of Docetaxol had it been even 3 months later, but it was just made available shortly after he did the Docetaxol. He had severe side effects from it and I wouldn’t really want to see you having to take that one — although it is regularly used to treat breast cancer. Anyhow, that sounds like a tolerable regimen. It will be interesting to see how it goes. Do let your doctors know about any reactions. By the way, if you don’t have one yet, get yourself one of those small O2 sensors that go on your finger and start using it. It will tell you what your blood oxygen level is — almost instantly. Don used it all the time and that let us know if something was amiss. The other good thing about it is that, if you are feeling like your respiration isn’t that great, if you are using it frequently, you’ll know your “normal” range — which should be 95 percent or better most of the time except maybe when sleeping. If you feel like you are short of breath but it’s actually pretty good — like 97 — you’re probably sort of having anxiety feeling and not really lacking in oxygen at all. That can be quite reassuring. The little sensors are quite inexpensive now and easily available at most drug stores and Walmart. They will also give you your pulse, etc.. Might help you to build up some confidence as you start trying to increase your fitness level in the coming weeks. Also, don’t feel that loss of a lobe is catastrophic. I told you about my uncle who lost much of A lung to TB and he led a very active life and lived to a ripe old age. A lot of this has to do with rebuilding of fitness levels each time they are knocked down. Takes a lot of determination. I realize that can be hard to muster when you’re feeling low. Anyhow, sending best vibes your way. 🙂
Bev, thanks for the follow up and the specifics about what Don’s treatment entailed. I’ll be on carboplatin and Pemetrexed (almita). The possible side effects of both (they say 30% or more patients get some of them) look pretty awful, but like you say, the key is to let the docs know if things don’t feel right. Robin, thanks so much for your words. I will do what I can to achieve a level of calmness and I truly appreciate your good wishes. Yes, Bev is a special person to share so much and to take the time to write it all down. I am so very grateful.
Don kept a little hard covered note book that he wrote in daily — he updated info about meds – he was on a lot of pain meds — and he wrote in other notes on how he felt — which helped identify if a med was or wasn’t working. He wrote down how far he walked each day – how his breathing felt – how much exercise he was doing – and any physical stuff like nausea. On reading it one time, I discovered he also wrote things about me.. sort of nice that he was noticing how I seemed. I’m glad he kept up his notes. It was helpful to me as I started to feel confused about the medications at time and we could refer to his notes.
I think meditation would be helpful — and something like chair yoga — and the weights — or walking in the house — Don would do circuits through the house to build his stamina as he had a lot of his treatments in winter — and by April, we were able to make some short day hikes on his good days. He never beat himself up for not feeling up to something — we just went with the flow — so I was glad to hear that you changed your plans and stayed in — you really have to listen to your body.
Most cancer clinics and hospitals have staff that deal with pain management, wellness therapies, etc.. Explore those and make the most of that. You’re right, it won’t be the doctors who will suggest these — it will be RPNs, or just ask at the clinic and they’ll probably be able to connect you with the best people to discuss your needs.
I meant to mention earlier that I know a lot of people write some dreadful things about chemo, but it’s really pretty dependent on the chemo treatment. Don had absolutely no probably at all with Cisplatin-vinorelbine. Most people have little problem with Carboplatin and whatever the other drug is that is usually given with it (I used to know this). Don did very poorly with Docetaxel (Taxotere) and had to stop after 2 treatments. He did well with the a targeted therapy drug called Tarceva. Anyhow, just be sure to keep good track of any side effects and let the doctors know immediately if you don’t think you’re doing well after treatments so that they can make changes if necessary. Speak up. Don’t just assume it is normal to feel crappy — because that is rarely the case these days.
Hope some of that helps.
I’m so glad Bev commented. Her insights and ideas are so well thought out and good. I think a journal is a good idea, and a recording of when you take your meds and when and if the pain starts or subsides. I also like the idea of meditation, and anything else you can do to calm your mind. It’s a hard thing to manage, this new way of life right now, but I truly trust that you will find a way that works for you and brings you the pain-free calmness you need. Thinking of you and sending good wishes your way from the far north coast of California.
Bev, thanks for the suggestions and the perspective. Janine mentioned to me that I need to keep a very specific daily journal, exactly like you suggested, with specific information about how I feel, when I started experiencing pain, etc. She was suggesting it for radiation and chemo, but I think it makes good sense even now. I haven’t begun the weights, but I will. And I have been exploring meditation as a means of reaching some sense of balance, even when I’m feeling least balanced and walking the tightrope.
I’ll explore what the hospital and the doctors recommend. Based on what I’ve experienced with both the oncologist and the radiation doc, I think I might have to ask their staff…they’re nice doctors, but they aren’t quick to offer anything but “data” about what they are doing and how my numbers look.
You seem to understand more than most what I’m experiencing. I know that’s because you’ve been there as Don went through it. Having an understanding “ear” is more important to me than I would have thought. Thank you, Bev. Thank you very, very much.
I’m glad you’re writing this down. When you have a crap day, this might be a good post to revisit. I suspect taking your medications later in the day might have been part of the cause of yesterday’s pain. That kind of thing matters. If you’re having too much pain, it might be a good plan to speak with a pain management specialist at your hospital. Keep a bit of a diary of the pain so that you can describe it – intensity – frequency – or whatever else — so they can suggest solutions.
I also recommend – and have mentioned this before, I think – that Don found it very helpful to do sitting exercise with weights to gradually rebuild his strength. Just small hand weights which he would pick up and do a few times a day — not for long at first. The rebuilding of strength has a positive effect on mind and body. I found the same following surgery in 2006. You might find it helpful to have someone do some gentle massage. There are people who are really good with that — you might even be able to find them through your hospital.
Diving into Scandinavian culture could be very interesting. I have a friend who just flew “home” to visit his roots in Denmark a couple of days ago. i’m enjoying seeing his photo of the countryside, architecture and he even posted his xmas dinner menu — seemed to be a hell of a lot of meat and fish on there!! Find the things that interest you. Find people you enjoy chatting with on FB or other groups to help get you out of the pain-illness-depression circle.
I know I can’t know what you’re going through, but I actually do have a very good idea — so I’m telling you what I know that worked for Don — while he learned to live with cancer.