My blog, once a repository for creative ideas I wanted to save from the ravages of time, seems to have become a repository for experiences I would rather have avoided. Instead of letting my blog serve as the moderately willing audience for my fantasia, I’ve forced it into another role entirely; it has become the unwilling audience for my slow-motion, stumble-by-stumble decline into ruin. I’ve successfully restricted, for a couple of weeks, the volume of posts that delve into my emotional response to my lung cancer diagnosis. I explained that the pause in my posts was a response to the physical pain of sitting at my computer, typing. And that was true to an extent. The more complete explanation would have assigned more responsibility to the emotional pain that I tried and failed to muffle as I wrote about my experiences. There’s something decidedly unmasculine about admitting to, much less talking or writing about, emotional pain. Despite my anger that such a social/societal restraint exists (and I’ll go on record that I find the imposition of such social restraints fundamentally cruel and wrong), I opted to stop writing for a while, rather than risk revealing even more cracks in my emotional armor. That is, I succumbed to weakness and fear. But I discovered during my hiatus in posting here (though I did continue to write, though not much about cancer) some evidence that cracks in one’s emotional armor can be used by some people as targets for their pry bars; emotional “weakness” is like a magnet for the intrusive tools of the person who pretends to care but who, instead, simply craves life in a soap opera to the real world. More on that later.
This post was intended to “make up” for the lack of updates since my last post almost two week ago. I’ve let it slide, as I am wont to do, into territory unrelated to its trigger. So, back to where I intended it to go.
When my surgeon and my oncologist told me the results of the lab pathology tests revealed that excising my tumor did not excise all of the cancer, I was surprised and unhappy. But I got over it, I thought. I would just need to add radiation therapy to the treatment regimen. That’s all.
Yesterday, I visited the radiation oncologist. He reviewed my medical records and told me he had spoken to my surgeon. The results clearly indicated a need for radiation. What surprised me was the fact that radiation would not be a ‘minor’ as I expected. Instead, I will need to have thirty (30) sessions, five days a week for six weeks. They will begin just a few days in advance of my chemotherapy and will continue daily (weekdays) until February 13. He made a point that I could drive myself to and from the radiation therapy. Except that, when I’m in the midst of chemotherapy and physically drained, I will need my wife to drive me to and from those sessions. According to my calendar, my chemo sessions will be January 7, January 28, February 18, and March 11. I haven’t driven since November 19, the morning of my surgery. I drove from the motel where we stayed the night before to the hospital, where we had to show up at 5:00 a.m. Wow. A month without getting behind the wheel. That must be a record.
As I look at my calendar—at how damn much of 2019 will be devoted to dealing with cancer—I just don’t know whether I want to put myself and my wife through it. My wife suggested yesterday that we might ask people who have offered to help to follow through with their offers. She doesn’t have any more interest than I in giving over her life to an endeavor that may or may not give the results we want. She, though, tends to believe all the offers of help. I know some people whose offers are absolutely dependable. But I’ve learned during the course of my experiences so far that some people wag their tongues as a means of gathering accolades for selflessness that doesn’t exist. “I wanted to call/come see you but didn’t want to bother you” or “I wanted to spend some time with you but my calendar is crazy-full.” Uh-huh. As if email, being a twentieth century technology, no longer exists and texts are not dependable because…uh…who knows. I find it hard to be civil to those people. And not because they are treating me like I’m stupid enough to believe their artificial empathy but because I know they must have treated others the same way and the others may not so readily let lies run off their backs like water on a duck. But I guess the fact that I recognize those people for what they are makes me more likely to be cynical about people I don’t know as well. Are those other folks who seemed to want to help really genuine in their offers or are they just attempting to paint over the flaws in their compassion with a magician’s magic? On the other hand, people who are not particularly close to us and who share virtually no attitudes with us socially, politically, religiously, intellectually, etc., stopped by with food and an offer to take us grocery shopping or to chemo treatments, etc. These are people we consider distant acquaintances. But those good people, as much as I appreciate them, don’t erase the disdain I have for the others.
Yet, while I find those make-believe missionaries of good will patently offensive, there are others whose offers are as good as gold. There are the people who show up on our doorstep with food so we don’t have to worry about making a meal after visits with doctors. I can only begin to count the number of bowls of chile and soup our friends and neighbors have given us. And people have stopped by with casseroles. And they’ve brought pumpkin bread and garlic toast. Without fail, these same people have offered to go to the grocery store for us or give me a ride to the doctor or do any number of other errands for us. Those are the people I believe; they are the ones I would feel comfortable asking for rides to town for radiation treatments. But, then, they are the ones who have already done more than we have any right to expect. And there’s Maddie, who moved away some time ago but whose kindness and decency remained; she reads my blog responds, usually, directly via email. Good people the world over deserve a friend like her.
The worst of the surgery pain is behind me, I think. I still have considerable pain, especially after riding in the car for a while…hurts like hell with every bump…but I can get through the night without getting up to take painkillers now. But I’m still much more tired than I want to be. And I tired quickly. And I wheeze when I mean to breathe. And I walk so slowly that I’ve come to realize what a bastard I’ve been when stuck behind someone who walks very, very, very slowly through a grocery store. Just when the worst of the post-surgical pain dissipates, the pains associated with chemo and radiation therapy will begin. My wife suggested I get my head shaved before my first chemo appointment. I didn’t think that would bother me (I’ve often talked about getting my hair cut extremely short) but for some reason the idea of shaving me head in preparation of going in for chemo treatment derails me, emotionally, for a few minutes every time I think about it.
I said I’ve written a bit unrelated (mostly) to my cancer in the past few weeks. And I have. One day, I might finished some of these posts: Tincture of Coconut; Last Lungs; Misdeeds Goes to Washington; Crush; On Coincidence; My Blame; The Grim Season; Christmas Largess; Barrier; and In the Flesh Bloggers. The last one, In the Flesh Bloggers, was prompted by the members of a Facebook group of bloggers to which I belong. This group of people have allowed me to wallow in self-pity without being judgmental; I appreciate them more than I can adequately express. They are among the folks who, if they were closer in proximity, I think would give me rides to radiation treatments or being me food. We should all be as compassionate and caring as they are; they have the credentials for admission to the human race. That’s high praise, coming from me.
I don’t know just what I’ve written here. Like most of my posts, it has scurried through rabbit warrens and exited through lions’ dens, running from something that’s chasing me or toward something I want to catch. For some reason, this morning is hard. Maybe it’s that yesterday’s visit to the radiation oncologist surprised me with its thirty-session program of treatment. Maybe I’ve kept stuff bottled up without unloading here for too long. Or maybe I’m just melting down for no apparent reason, as usual, and it will pass.
It might have been better if I’d let this post join the drafts that haven’t seen the light of day. But I think not. I think I need to sometimes reveal the madness beneath my serenity (that’s a joke…I have no serenity) just to prove it’s me writing this blog.
Oh, one more thing. Don used to feel ravenously hungry after his chemo treatments. We used to stop at Harvey’s (a popular burger place in Canada) so that he could have an Angus-burger on his way home from chemo. Doubtless this was a side effect of the steroids they give — but we made it into our little ritual to hit the Harvey’s on our way home each time!
Yes, now is the time to invest in those super-soft t-shirts as you’ll probably find any contact with less-than-soft cloth pretty irritating. These are the things people never think to tell you ahead of time! I also meant to mention that some of the fatigue you are feeling is probably from dealing with the psychological stuff — it’s not always just physical. One thing that Don found quite helpful was to do exercises just sitting in his chair to help rebuild his strength. He used hand weights — just light ones at first — to help keep his arms strong. He also had ankle weights and would do leg lifts to rebuild strength in his legs — he had to rebuild strength at first. This is all stuff you just have to work at a little — think stuff like “chair yoga”. It helps you to regain respiratory strength and rebuild some endurance — all worthy objectives. I think you’ll find most of the treatments – radiation or chemo — less onerous than you may expect. A lot of the effects of chemo are greatly mitigated by meds they should make available around each chemo treatment. Glad that you “feel close” through our writing. I feel the same way when I read your posts and comments. 🙂
I was glad to read Bev’s comment about Don’s response to the radiation treatment. I so hope the same will be true for you. It’s good to have friends who have walked this path and know the way ahead. I wish I had words of wisdom. I don’t. I only remember watching Roger and how he responded to the chemo treatments. What I saw was that the body is resilient. I loved this line, John– “I think I need to sometimes reveal the madness beneath my serenity (that’s a joke…I have no serenity)”– me too, my friend, me too. Take care.
Bev, your willingness to share what you experienced with Don’s cancer has been, and always will be, incredibly useful and so generous. I appreciate it. I hadn’t thought of soft t-shirts! I guess I better stock up. I tend to buy the cheapest stuff I can find, which usually translates into badly used and abused stuff I find at resale shops. I need to focus, from here on, on going for the truly “worn” stuff that’s soft and comfortable. I may even splurge and buy something super soft and “new.” I’ll think about my hair some more. Maybe I’ll wait and see. On the other hand, maybe I’ll use it as an excuse to see what I look like with no hair!
Thanks, Bev, for always being there to listen and support me. Even though you are two thousand miles away, I feel you’re close whenever I read your comments (and your FB posts)!
Linda, thanks very much for your comments. I know you’ve been there, watching, as you’ve left several acknowledgements either on FB or here on my blog. You have to know that I really appreciate your. And, as for my inner circle, consider yourself part of it!Thanks, Linda, I really appreciate you.
It’s good to see an update from you today, John. I’ve “dropped by” to check for posts a couple of times a day over the past two weeks. I’ve been hoping that you just went quiet to work out some thoughts. As for where your thoughts have wandered, the whole cancer thing falls into that area best described as “That Changes Everything.” It seems like there is almost no part of life that isn’t changed by a cancer diagnosis. I think that was one of the hardest things for Don and I to deal with — and I feel the greatest sympathy for anyone who is having to make these kinds of adjustments.
Regarding “people”. We found that a lot of people “fled” after Don’s diagnosis. It’s some fundamental screw-up in modern society. The best thing is to ignore those who wimp out — they are just so much chaff. Share your thoughts with those who stand fast. I think you’ll find that the ones who are “there for you” have already been through the mill themselves, or with family or close friends — and they know what’s what. They are the ones who will offer to give you a drive somewhere — and mean it. Don’t be afraid to ask when you need help. They *want* to help. Truly. They do. Accept drives when they are offered. This is one thing people know they can do to help — some way to be “useful” when they are feeling at a loss for how to help out. Take them up on it.
A couple of practicalities. Don drove for a lot of his own appointments during treatments. I was always with him, but he enjoyed driving and found it relaxing. He used to like to go for recreational drives as well and often drove — at least for half of the day trip. Having radiation treatments were easy. He did about as many as they are scheduling for you. He didn’t have any “reaction” to them — it was like nothing really happened. However, he got some sunburn on his chest — it was tolerable. Just discuss this with the radiation crew. They can probably make recommendations. One thing — be sure you have a stock of really nice, soft t-shirts — ones that won’t irritate your skin.
I wouldn’t bother shaving your head. Some chemo doesn’t cause any hair loss. Don’s first line was Cisplatin-vinorelbine and it causes no hair loss. Some chemo does and some doesn’t. It won’t all fall out suddenly — or not usually. Most people find it just falls out gradually as they brush their hair. I disagree with this shaving of the head thing as I think it’s probably too upsetting for many people. Just leaving it probably lets you adjust to it — if it actually does fall out — it may only be some of it. This is a good time for buying that nice hat you’ve always fancied.
Well, I hope some of the above is useful to you. I’m sorry I can’t “be there” to provide some personal help, but I am always “here” to offer support of the written kind.
take care. xox
bev
John, I’m so sorry you are going through all of this. I think of your smiling face and wonder how else could I visualize it, but I know it has to be rough. I think of you and Janine often and pray for you daily. I’m so happy to see a post because you have been on my mind. With the hustle and bustle of everything life it’s easy to forget to send a message, but it’s also easy to say a prayer. If we can do anything, please don’t hesitate to call us, even though we aren’t in your inner circle. Hang in there!