Happy New Year! Is it my last?
Had lunch with my former business partner and best man. We’ve only seen each other sporadically the last couple decades. Things started off as one would expect getting back together after a long separation. He then told me how much he learned from me, and we both started crying. I can’t put into words how much it meant to me. I had been feeling like my life had no value and I’d leave nothing behind. He made me feel so good. Looking back on it, I regret having not returned the favor. He taught me many things as well. I was just too needy right then. I’ll right this wrong the next time we meet.
The depression is still well under control. I feel amazingly good, all things considered. I go ahead with my first shot of Lupron, one month dose to be safe.
Met with the “terminal illness” psychologist. I tell him I feel as if I’ll make a big change in coming to terms with having cancer (which is not the same as coming to terms with death or dying) in one big event, but I have no idea how it will happen. He’s not very encouraging, suggesting it’s probably going to be a more drawn out process. I tell him he’s not good at handing out apples and that every now and then I need to know he believes in me. I don’t remember what he said after that.
Later in the evening I get more and more mad at his lack of belief in me. I know I have to come to terms right then, because I have to believe in myself and do it alone. Right at that moment, in an instant, I felt the change happen. Man, am I pumped!
Woke up and knew the change from last night was real and would stick. Feeling great!
My wife and I meet with the radiologist. He reports his findings of discussions with colleagues on my treatment: a slight majority say I should wait for pain before treatment, a very vocal minority say I should treat due to my age. I decide to go with treatment, despite his recommendation. Fifteen treatments are prescribed. The expectation is I will have few or no problems except fatigue. I’m feeling good. I’m in control and doing something!
My wife and I meet with my oncologist. My PSA went down considerably to 1.92. We talk about what this means in terms of the worst case scenario. I need to know how far out I can plan trips. Cruises are often booked well over a year in advance. Should I refrain from doing that? He says that with this result I should have at least two years. This is huge for me. I’ll see another birthday, Christmas, etc. In about a year I may be back in the same place, but I’ll cross that bridge when I get to it.
My wife and I meet with the radiologist to go over final treatment details. It turns out the MRI found a third tiny cancer spot on my spine. Fortunately, it’s close to the other two spots and the radiologist made minor changes to the treatment plan to treat the new spot as well. I’m ok about this.
I get my first radiation treatment. The radiation from the top lasts about15 seconds top and 25 seconds from underneath me.
I vomit this evening.
I took the second radiation treatment today.
Meet with the “terminal illness” psychologist today. I told him about how mad I got at him after the last session and how it precipitated my acceptance of my cancer. We wound up in a good place and decided it would make sense to bring my wife into the next session.
I contact my primary care physician about the vomiting episode yesterday and we decide is was probably a 24 hour flu going around now.
My wife and I meet with the radiologist and discuss the first vomiting episode. I’m pretty sure it was just stomach flu. There’s not much else to address.
I take the third radiation treatment
I vomit twice that evening, the second time was much worse than the first. It makes sense after I think about it. This was due to the radiation. There was nothing in my stomach to cause it. It felt like I was trying to throw up my stomach lining. This is one trial learning for me – don’t throw up when there’s nothing in your stomach causing you to throw up. I make a commitment to myself not to throw up again from the radiation.
Called the radiologist this morning about last night’s vomiting episode. He prescribed the anti-nausea drug Zofran, which I took before the radiation treatment.
Took the fourth radiation treatment.
Woke up with a killer headache. At least it subsided quickly after I got up. Checked the Zofran bottle. Sure enough it says, “may cause headaches”. My luck.
Took the fifth radiation treatment.
The Zofran helps with the nausea, but it’s not a 100% solution. I’m now on a bland diet and suffering from radiation fatigue. Heartburn is now a significant problem. It’s so severe that my teeth hurt. How that happens I don’t know. Prilosec helps, but doesn’t cure it. I’m bed-ridden for the most part.
Took the seventh radiation treatment.
My wife and I met with the “terminal illness” psychologist today. We spent most of the time talking about support structures. I think we passed and picked up some good tips to improve our support structures. He recommends we come back together for the next session and we agree.
Received the eighth radiation treatment today and met with the radiologist. I’m now taking Zofran regularly half an hour before treatment and thru evening to help control nausea. I felt pretty good this morning/afternoon. The evening was very rough, though. Zofran wasn’t up to controlling all the nausea.
The nausea was too much for me to take the ninth radiation treatment today.
The past weekend was tough, but the nausea and heartburn reduced enough I was comfortable resuming radiation today with treatment number nine.
My wife and I met with the “terminal illness” psychologist today. This was the hard reality session. There is an average time to my death for this kind of disease, and we should consider making plans with that in mind. Of course we should hope for the best, but don’t assume it. He stresses the need for wills, medical directives, powers of attorney, etc. Fortunately, we did that years ago, but decide we should review and update as necessary. He encourages us/me to come back to discuss what we/I plan to do in the time remaining to have purpose. Probably because of the ongoing nausea and heartburn, I need a break. My wife sees this and we decide to postpone any sessions for the time being.
I am at the end of the third week now and take radiation treatment number thirteen. My life seems to be mostly significant nausea and heartburn pretty much all the time. I’m eating next to nothing and have lost 15 pounds. I’m basically bedridden. This night reached a new height of nausea, but there’s nothing to do about it except bear the pain.
The nausea and heartburn are so bad I cancel the radiation treatment today.
Meet with the oncologist to discuss the problems I’m having. I play the tough guy and downplay how sick I’ve been, but I do tell him the drugs aren’t working. He prescribes some new drugs for me. We turn to my PSA, which dropped to 0.94. We didn’t talk about what impact this might have on my life expectancy, but I don’t get the sense he thinks it adds much. He says now we’ll wait for PSA to start rising before next bone scan. We discuss the problems I’m having with radiation again. He recommends I just bite the bullet and be done with the last two sessions.
I take the fourteenth radiation treatment.
I get the next one month shot of Lupron.
Tonight is one of the worst nights of my life. A few hours after the treatment my nausea goes off the charts and stays that way for seven hours. I didn’t vomit even once, because I knew from my prior experience that would only make it worse. Still it seems a miracle I was able to stop my body from forcing me to throw up over and over again.
I knew that the treatment had finally become worse than the disease. It felt as if it was killing me more than the cancer. And even if that weren’t true, any life extension wasn’t worth experiencing any more of this. I leave a message with the radiation nurse, describing what I’ve been through and that I’m done.
The radiation nurse calls me back to encourage me to wait a day and come in for the last treatment. It doesn’t matter to me. I stopped the treatments at fourteen. Case closed. He responds with “It’s only one more session and the doctor did prescribe it.” If I weren’t so weak, I’d have eaten him alive. Instead I feel horrible. I’m failing myself and failing my wife. Even as a failure, though, I can’t go back for that last treatment. I know I will regret any more treatments. I have to stick to my guns and I do.
Recovery has been very slow. I’m still mostly bedridden fighting nausea. The heartburn has finally subsided using the Prilosec. Life goes on, and today I have an appointment to get my teeth cleaned. With my dentist if you postpone an appointment, it may be months before you get fit in, so I go. The only reason I include this is the hygienist noticed I’d lost a lot of weight, and thinking that was good mentioned it to me. As I tried to explain it was due to cancer treatment, I was so overwhelmed with emotion I broke down. Then she broke down. In the end it was wonderful to see her genuine concern, but still embarrassing. I’m finding more and more that Lupron wreaks havoc with my emotions and self-control. And that just leads to feeling less and less in control of a situation I am desperately clawing at to gain control.
Last night around 11 pm I started having abdominal cramps. By 2 am I’d thrown up three times and the waves of abdominal cramps reached the point I was afraid I’d pass out. I told my wife three times that if I passed out to not revive me under any circumstances. (I didn’t tell her what to do with me if I passed out, I didn’t care.) Off to the ER we went. Fast forward through two morphine shots, four x-rays, a CT scan, two bags of Potassium, and about six hours. I was diagnosed with dehydration a potassium shortage, and, most significantly, colitis. They contacted my primary care physician, who wanted me to come to his office. Shortly thereafter, I was walking out of the ER, puking into vomit bag, headed to my primary care physician’s office.
I have no doubt that the radiation played a role in the development of the colitis.
I was pretty sure I would be hospitalized, just to get the painkillers I needed, but I was assured he could control the pain and treat the colitis at home. A magic pain patch did the trick. Within a couple minutes after my wife applied the patch I was in heaven. Constipation was the heart of the colitis problem. Even with the heavy duty pain patch I was able to resolve the constipation in a few hours. But I wasn’t “over” the colitis yet. For the next week, I was on a Jell-O diet and truly bedridden. At least I was out of pain.
One final comment. The experience at the ER was appalling. They might just as well have worn “I don’t care” signs. I’m lying on the bed, doubled over crying out in pain, and the paramedic is staring at a computer monitor asking what drugs I’m on. I understand the need to get that info but it wouldn’t kill him to make eye contact and say “I know you’re in pain, we’ll help you”. He couldn’t have cared less if I died right then. The nurse hooked me up to a potassium and ringers drip, telling me the potassium had to be diluted because it would burn otherwise. Sure enough she failed to check on it, the ringers ran out and all of a sudden my arm was on fire from a straight potassium drip. I signaled for help, she answered and casually said “oh yea, the drip must have run out”. There was no sense of urgency in fixing my problem either. Unfortunately, I needed a second bag of potassium after I painfully finished the first. Twice, twice I asked her if she could set it up to ensure the burning wouldn’t happen again. Both times she assured me it wouldn’t. Of course it, did but she wasn’t on shift anymore – not her problem. One of the measures of a person’s humanity is their willingness to be inconvenienced to help others. These folks fail big time.
I’m seven days into the pain patch. The nausea, heartburn and colitis are all fine. It’s time to take off the pain patch. I’m looking forward to finally feeling like a real person and getting back into life.
Whoa! Coming out from under the fog of the pain killer isn’t all I hoped it would be. I realize now that I’m outrageously weak from all the time in bed and solid food is a challenge. Worst of all the Lupron is driving me into deep, deep depressions.
The depression is overwhelming. I set up an appointment with the “terminal illness” psychologist. Hopefully, he can help.
Another bad day consumed by depression. I’m still outrageously weak, mostly bedridden. Several days ago I started believing this will never get better. I’ve told my wife this several times each night when it’s the worst. She promises me each time it will get better. I want to believe her so much, but I just don’t know. I feel so weak as a person and as a man.
Today I saw my “terminal illness” psychologist. He told me it’s to be expected that I would be depressed after all I went through. It seems obvious, but I was so worried that it was all the Lupron and I lost perspective. I convinced myself that if I couldn’t handle Lupron I was failing myself and my wife. After all, I was thinking I had to be able to take the first line drug for our family’s benefit. Looking at it dispassionately, most of the depression could very well have been from the illness and I completely ignored Casodex as a backup drug to replace the Lupron. Our minds can play tricks when we’re under a lot of stress. This session was a huge help. At the end of it I was feeling great and decided to come back to start the discussion on improving the purpose in my life.
These things are fragile, though. When I went home, my wife mentioned she’d found a dog at the shelter that we might want to adopt. For whatever reason, it threw me into another deep depression. Fortunately, by the end of the evening I came out of it and was fine. I don’t really know what was going on there.
Fragility returned on February 26 as I woke up feeling down and was never able to get past it – up to and including today.
Met with my oncologist today. PSA is way down to 0.1, great news! Unfortunately, due to the deep depression, we decided to go off Lupron for at least a month. It’s not clear how much of this was due to depression from the illness and how much was the Lupron. The problem with the Lupron is once you go on it, you’re on for at least a month. A month off will give me time to regroup, and I’m thankful for it. My PSA is certain to go up by the end of the month and the cancer will get some more food, but the depression is crippling me. If it means I die sooner, so be it. We reassess in a month. Most likely I’ll switch to Casodex, which is in pill form. If there are problems, I can stop taking Casodex and in a day or so their effects will be out of my system.
Met with the radiologist. He says it no big deal that I missed the last radiation treatment. I decide to not mention my experience with his nurse. It appears I’m past all the acute effects of the radiation. He told me it was likely radiation on the small intestine caused my nausea problems and may have been responsible for the colitis.
Big day for me. Woke up feeling good and it held. Managed to stay active for seven hours without needing to rest. Ate out for lunch and dinner – the first time in seven weeks.