To recap, I’ve had a lot to deal with over the last two years—getting a diagnosis of kidney and bladder cancer, undergoing surgery to address both, finding out the surgery was not successful and that the cancer is spreading and will be terminal sooner or later. This week, more signs of changing times. Here’s a status check in descending chronological order.
-- Ongoing primary complication: I’m fighting pain from one or more tumors in my side primarily at night and my overall stamina is slowly failing me.
-- In June, I had to undergo emergency treatment in the ER to deal with a full-body sepsis (a.k.a. blood poisoning) that they did not warn me about and for which there were no warning signs. I was so clueless about the danger that I drove myself to the ER even though I was doubled over in pain; thank God it wasn’t far. During that night I lost consciousness and wound up with a blood pressure reading in the low 40’s over the low 30’s—a reading that was “incompatible with life” as one doctor put it. This led to a hospital stay of about eight days, at the low point of which I quite literally did not have the strength necessary to raise my head or lift an arm or leg for the purpose of changing from one hospital bed to the other; instead I had to be lifted like a sack of potatoes. That was mortifying. That goes double for a lift onto a porta-potty that came much later; fortunately, after getting on the pot I was able to take care of my business in private. I know a day is coming when that won’t be the case and I dread it like the dickens. Diagnosis and treatment: chemotherapy and radiation had stripped my body of its defenses, requiring a massive infusion of antibotics. I was receiving at one point an infusion of IV antibiotics every 5 hours for two weeks, including at home where I had to learn to administer this myself. Ongoing complication: low stamina primarily evidenced as weakness, shortness of breath, and flank pain upon moderate exercise. I’ve also lost most of my taste buds (sweet tooth is still there, thank God, which is a very good thing).
-- A couple of weeks after that, I suddenly became crippled in my right leg, which without warning swelled up to twice its normal size. That led to another trip to the ER and another four days of hospitalization. Diagnosis: Deep Vein Thrombosis, probable complication of radiation, chemotherapy, and just being a cancer patient, who tend to throw off such clots. Ongoing complication: Both ankles remain swollen, but it’s worse on the right. Both ankles are numb and tingly. If I walk more than a few paces, one or both legs start hurting. If I push it too much one or both of the legs will balk, forcing me to sit down.
-- On Labor Day I suffered an intense attack of—something. Call it a panic attack if you want. Suddenly I could not breathe. Fortunately, having been through this drill many times as a teen asthma patient, I was able to bring my breathing slowly under control, but not so quickly as to prevent my lungs from being sore for days (I’m still not quite over that). A hospice nurse was here within 30 minutes to help me over the hump from there, although the truth is she couldn’t do much other than offer calm advice while my breathing slowly subsided. Ongoing complication: I now have a phobia of going upstairs and downstairs too often, of lifting anything at all or of doing anything more heavy than walk short distances across flat spaces. Believe me, if you’ve never had the kind of shortness of breath I’m talking about, you don’t ever want to experience it.
Where this left me as of a few nights ago was that I’m having hard time sleeping through the night after having had much success with that prior to that point. The doctor suspected that we could better manage my meds with a little experimentation so as to actually medicate me less at night (this seemed counterintuitive to me but that’s why the doc’s the doc and I’m the patient) and a bit more during the day, the idea being to keep a minimal amount of drugs in my system at all times to head off flare-ups. If you’re on pain meds, this is why they tell you it’s of paramount importance to take your drugs on schedule. If you let it slide and the pain starts, it is so hard to ratchet it down again. So, on Friday, they came out to get me and off to the Fountains we go to see what my pain med schedule should look like in a controlled environment.
I have said before that as far as my struggle with this disease goes, I have no intention of being a “valiant fighter in the war on cancer” and don’t want to be known that way. I would like, instead, to be known as someone who fought to wrest every moment of life from cancer possible. That is one reason why I write this blog, and it must strike a chord because people continually write and thank me for it and encourage me to keep at it; some demonstrate their sincerity by sending along not only heartfelt prayers and words of incredible warmth for myself and Deborah, but also gifts, including some anonymous ones. Words fail both of us over this incredible warmth and generosity.
Given the situation and my determination, there have not been a lot of what I would call teary-eyed moments, but there was one on Friday as we pulled out of my driveway, left the neighborhood and headed down the street for the 30 minute drive to the hospice. They had decided to send the van for me, and due to the seating arrangements I wound sitting up atop a stretcher looking back past my feet at my receding neighborhood. I have physically been in a position to watch traffic recede from me in that direction and manner only once before, but that was during the recent ambulance ride under which I was in great pain. This time I could be more contemplative—and it struck me that everything was changing, that home would not be the same when I returned and never would be again. I am not ashamed to admit that sense of loss overwhelmed me and the next thing I knew I had tears streaming down both cheeks. It was all I could do not to sniffle and I was very glad no one asked me any questions for the next few moments. Exactly what I expected to be different on my return, I couldn’t say, but clearly my cancer had progressed to a certain point where an off-site visit seemed appropriate, so it seemed logical that some kind of change would be in store because of that.
Well, that turned out to be true. I loved, loved, loved my stay at The Fountains (the in-house unit for Casa de la Luz), for a number of reasons. The main one was that I felt surrounded by people who could help me if I were to get into trouble. Oh, I know the feeling was illusory—when someone is having a shortness of breath attack like the ones I was having, there’s not much anyone can do about it. But still, I was fed regularly and visited often, and the visits were unhurried. The nurses and my doctor all acted as if they had nothing to do today other than hold my hand—which definitely needed holding. True, I did get awakened several times during the night for medications, but I even found that to be reassuring. Plus, half the time I was alert before the nurse came in anyway, having been awakened by the very pain the medication she was bringing was now intended to help relieve.
One of the things that made the difference in allowing me to sleep better, aside from the better administration of the medicine, was the hospital-style bed installed in my room. It was a simple affair—a little half-dozen button jobber that can be raised and lowered in six different ways. It sure made sleep come easier, or at least I should say that it did for a guy in my condition for whom there are only a couple of comfortable positions left from which to start.
Little did I know that part of my “therapy” was going to be to get one of these beds at home. It was delivered last night—a bed absolutely identical to the one I had in my hospice room in every regard. Deborah and I ran down to Wal-Mart to fit it out with sheets and a blankie. We put it in the media room, where it’s a little out of place but still quite comfy. This accomplishes two things for me. One, I’m in a comfortable bed which I can tailor to my personal needs given the constraints of what the cancer is doing to my body. Second, I don’t have to come up and downstairs several times a night. Once I go to bed, after I’m done with writing on the computer really there’s no reason to go upstairs again, thereby setting my breathing at ease. (Panic attacks are hard to describe but they can start not when the exertion starts but rather when you think about or start worrying about exertion that might lie ahead; at that point you simply become very aware of your breathing. Pulse can go up too sometimes, way up, just thinking about climbing stairs, or going down them).
But here’s the thing: that teary-eyed vision I had upon leaving the neighborhood on my way to the hospice was accurate in that upon my return, I would be making a permanent and very dramatic change: to wit, giving up the queen size bed I’d been using for as long as I can remember, and substituting that twin sized hospital bed, which will be my night-time lodging from now on and forevermore. I imagine that bed and I will get to know each other quite well in the times ahead. I’m glad to have more comfy furniture at my disposal when I need it.
But I can’t say I’m glad to be in a position to where it takes special-ordered powered medical equipment to make me comfortable. The implications of that story are not good.
Right now I’m on nearly a dozen meds. I have my alarm clock set to perform a nurse’s function: morning, noon and night that thing is going off telling me to administer something or other, with no less than 9 alarms in all over a 24 hour period. Less than half the scheduled meds are pain-related; most of the rest are related to digestive issues the pain meds can cause (constipation is a big one but that is under control for now, I’m pleased to report). The real interesting bucket of water in the face is that not one of the meds is curative. Since chemotherapy was so dramatic in its efforts to do me in, when I said “no” to any more of that business, I also said “no” to any possibility of anything curative being done for me going forward (not that much of any such possibility existed to begin with). It’s all palliative now. As the disease progresses, presumably the palliative efforts will have to step up, too.
And I can chart the progress. In April I had one position that I could not sleep in; it was only one but I was sufficiently alert as to make an inquiry, which led to the metastatic cancer diagnosis. By June there were only two positions that I could sleep in; positions that were sufficiently pain-free as to allow me to sleep, but those positions were only good for about 5 hours and then I had to come downstairs and align myself on the recliner, with nothing at my disposal in terms of pain relief other than Vicodin, which did very little for me. Once the hospice people got on the case with their philosophy of comfort, things have been looking up. This most recent round tweaked the experience even better. Now, I do wake up at least once in a bit of pain every night, but the drugs quickly knock it down and I am able to drift back to sleep. On my hospital bed. The old, normal routine is done and now it’s a brave new world ahead of me, a world of alarms and meds and powered hospital beds from which I will never be able to retreat. But I’m glad they’re there. It sure beats the alternative ways we were treating cancer patients as recently as 15 years ago.
Next entry: we’ll talk about that fourth book that I’ve been promising you. I’m about ready to come out with it. Can the world handle it? :-) I’m going to admit I’m nervous about it. Stay tuned.
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Read more on my medical travails here.
Hanging on to your every word.
ReplyDeleteLove,
Kelly
Love ya back.
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