The Rest of the Story of the First Chemo Treatment

 There really isn't a lot more to say. It went very smoothly. Lots of really nice people doing really good work with not that many patients in an outpatient nursing setting. Saw the oncologist briefly first thing. We went over my labs -- looking good for the most part with a pretty significant drop in testosterone levels, trending downward from a much lower level meaning the cancer isn't spreading as fast (can't) and I may start seeing improvements.

The infusion of Docetaxel (Taxotere) and Leuprolide (Lupron) took about 1 1/2hrs -- much shorter than the Rituxin infusions I used to get for RA. They sometimes took five hours and I had to repeat two infusions two weeks apart every six months. I receive these new infusions once every three weeks for the Taxotere, and once every three months (I think) for the Lupron which is delivered through an injector I wear on my arm.* I was apparently doing so well before the infusions that the dosage was cut by 10% and we are to monitor whether that is enough or not. If so, we continue at this dosage or a smaller one. If not it will be increased to 100% or more. Nice it's relatively easily adjustable like that. At the moment, several hours after the infusion, I can't say one way or another. We'll see.

Lunch at a friend's house was lovely, a Middle Eastern feast, part of which we got to bring home with us because we couldn't eat it all at our friend's place. Got a bone density test and chatted a bit -- commiserated -- with the technician whose son had committed suicide five months before. She was a sweet lady who is clearly devastated by the loss of her only child. He was 40.

Then we came home and are resting. A lot. Got a ramp to get up and down that step at home, but we found it also works well and is long enough to get up and down the two steps at our friend's house. This is good. Very good. 

We have no more appointments in town or on video until Friday, when I do a physical therapy appointment in the morning and a telemedicine appointment with the dietician in the afternoon. I'm working on gaining a bit of weight. I've stopped losing at 162 lbs, and my goal is between 165 and 175, though the dietician says I should shoot for 180. Weight gain isn't easy because of my very modest appetite but I got up well over 200 for a while when I came back home last summer from the hospital. So we'll see.

The point of the treatments are palliative. Keep me as comfortable as possible to the end, whenever that might be. I've become used to it, and I do not fear the possibility of a near term "end." We were discussing it at lunch. Our bodies are not ::ourselves::. They are containers and they come and go. In a Buddhist sense, ::ourselves:: may continue on indefinitely through reincarnation or some other process/nonprocess in which the being ::doesn't exist:: or permanently "exists." If I die, I'm passing from one state of "being" to another. That's all. And if I'm reasonably comfortable through the process, so much the better.

At first I might have worried a little bit that I'm becoming an opioid addict, but then I said to myself, "So what?" What is to fear? That I might OD? Yes. But so far, the dosages are very low, and the chance is also very low. If dosages increase, then I'd worry more, but the infusions are supposed to prevent that by providing long term cancer treatment that includes pain treatment. This is only the first one, so I can't tell very much, but I'm optimistic.

I've received the bill for the hospitalization. A little over $1600 which I might be able to cut in half once I apply for financial assistance. And I've received another shit - ton of literature about other kinds of assistance from the state and local agencies on aging, disability and caregiving. There is a lot to go through. And I'll get to it. Really. I will!

So, that's where it stands right now. I'm really very optimistic and grateful. Yes, it should have been caught earlier, but the earlier symptoms were of a lethal infection that had to be treated and by removing troublesome teeth, made very unlikely to return. That has so far been the case. The cancer was no doubt there at the time -- at least I don't doubt it -- but it was more important and difficult to treat the infection successfully. Now to treat the cancer -- compassionately. I'm grateful for that. I just wish it were easier on Ms. Ché. She insists she's doing "fine" but I see her struggling so much and my heart breaks. We've been putting bugs in lots of people's ears that she needs help, and I'm confident she'll get it before too long, but bless her heart in the mean time!

The next update will come when there is "news." Right now, to rest....

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* Not exactly. The Lupron is infused with the Docetaxel. The injector I'm wearing is delivering Neulasta. I don't know what it is or what it is supposed to do, but the injection is supposed to start in about 10 minutes and last for 45 minutes, whereupon the injector can be removed and properly disposed of. Neat.

It helps prevent infection by enabling the bone marrow to make more white blood cells.

Chemo Starts Today

 I've been given preliminary medications that are supposed to lower my testosterone levels and otherwise start  controlling the cancer, but the real thing, the heavy duty infusions, start this morning. I've been given a shit-ton of literature to read to tell me about the drug that will be infused at the cancer center -- outpatient -- and I've skimmed it. I'll try to get into more complete detail after the treatment is over. 

I washed up yesterday, first water bath since this difficult period began over three weeks ago. I did a sponge bath in bed, not in the bathroom where I really haven't been in more than three weeks. No, just a couple of tubs of hot water, soap, wash cloths, Chux, and patience. I was doing it myself. Ms Ché prepared the tubs and got the towels and soap and stuff together, but I was feeling well enough to handle the washing process myself, and all went as planned until...

I got up for the fourth or fifth time, took a step to get some clean clothes, and whoops!, down I went. I was right by the bed so I thought I could get myself up. Nope. Wouldn't go. Each time I thought I was about to hoist myself off the floor by hanging onto the bed frame, my leg went out from under me and I was right back where I started from (the Shangri Las were playing on the laptop on the bed... they had some really good music on an album released after their famous period; it should be in a Broadway show, or be the spine of one... hmmm) .

I called out "Help!" and Ms. came in a jiffy. The trick was to get me up. Whoa. After much trial and error, we figured it out but... these falls were what convinced me to go to the ER in the first place, and while they aren't frequent, they're often enough, and I get banged up enough to make it not my favorite thing to do, and at least so far, there's no warning, and no sure way to prevent it. My neurologist said they happen because the cancer has damaged my spine, and in certain positions my spine pinches a nerve which affects the leg muscle, weakens it and I fall. I won't always know when it will happen.

Great.

So we transport me with careful use of walkers and a wheel chair. Got a ramp the other day to facilitate getting me up and down the one step at our house. Seems to work fine, though Ms. was dubious at first. I have two walkers. One was her mother's, the standard "frame." The other is my four wheel walker with a seat. Now I see them everywhere. We have two wheel chairs too, one with the big back wheel I can work myself and the other with small back wheels to facilitate transport. 

So we can get me to appointments and stuff, but I'm really worried about Ms. She has no help around the house with me, and the strain is really showing. I hope we can get someone skilled to help out soon. They say we should be able to, but it may take a while. Well, everything does. 

After the treatment this morning, I'll try to fill in more.

PT

 Did the first of many or few physical therapy appointments. It's curious. I was hospitalized in part due to falls, and the falls were due to weakness in my legs which was in part due to the cancer. I was evaluated in the hospital by a physical therapist (or was it occupational?) and I thought therapy would begin, but it didn't. In fact, I never saw a therapist again in the hospital, and when I asked, the responses were... muddled to say the least. What was going on? Well, the recommendation was to put me in an acute care facility rather than doing or attempting rehab while I was in the hospital. Since I didn't want that, the answer, such as it was, was to do nothing. Let me find PT on my own. Or something.

This is one of the oddities I've encountered. I broke my big toe when I fell the first time. We finally got that sorted out at the hospital with X-rays and such, and The Foot Guy came by for a consult. He checked both feet, claimed he was going to order a post operative shoe for the broken toe, then went into a strange routine about how he'd always had a good life until last year when he was fired, and how difficult it's been for him to rebuild his life, and he went on for a while, then thanked me profusely for letting him tell me his story, and then he went away never to be seen again, nor did the post-operative shoe show up. When I mentioned it to staff, they checked my chart, didn't find an order for a shoe, and one at least seemed to hint there was no record of a Foot Guy coming by. Uh-oh. Anyway, the toe seems to be healing OK without the Shoe, so we go on.

The absence of PT bothered me, but they said that the provision of PT in the kind of situation I was in was rare. The PT staff pretty much just evaluated and made recommendations, and since I was going to have it close to home once released, there was no reason to start it in the hospital. Hmm.

The first appointment was mostly just evaluation, and I had lots of difficulties -- like keeping from throwing up -- but since returning home, I've also gotten much stronger and steadier on my feet, and I'm better able to get around, but for that first step up at the front stoop. It's a problem, but not insurmountable. We've got a wheelchair now, and two walkers, and we're researching getting a ramp. Should be OK soon. And we worked out an elaborate way to get me up and down the step without a ramp that works pretty well. It was a challenge, but we did it. 😃 

All of the different locations around Albuquerque where I'm having tests and treatments are another challenge, but we'll work it out. PT is the least of the challenges at the moment.

Not Stable Yet

 I'm inundated with calls and tests and appointments and trying to figure out how to get from here to there, sometimes just around the house, what to do, what not to do, etc. etc. It's overwhelming at times. Other times I get to rest which is good. 

When I went to the hospital I was in a lot of pain, mostly lower back and hips. I'm taking a lot of prescription opioids now, and the pain is well-controlled, but I know it's there. When I left the hospital I was very weak, especially my legs, and this was after falling repeatedly before I was hospitalized. It came on without warning, very suddenly, and I couldn't make sense of it. Up to that point, I thought I was recovering well if slowly from the infection last year. 

Turns out this is not that. I saw the MRI comparisons between last year and this year, and they are quite different except for one thing: both show lesions on the spine and hips. This year's MRI shows many more lesions on the spine especially. This and the PSA number in the 400s and the biopsy results showing definite prostate carcinoma were the basis for a diagnosis of "advanced prostate cancer" (stage 4).

This is a death sentence. So is being born, so I'm not making too much of it. But I did ask how much longer I might have, and the optimistic prognosis was "4-5 years." Amazing if it turns out that way. But it could only be months, too. We never know.

Early therapy and medications have started slowing the spread of cancer, but it's not likely to reverse. I'm stronger, but I'm not stable yet; lots of ups and downs. Many challenges getting to and from the car, in and out for tests at various locations around Albuquerque -- so many, jeeze; so much travel. And then physical therapy here in my little village.

Ms. Ché has been amazing, incredible, both as caregiver and major cheerleader. She's very aware of the meaning of all the terms and efforts, and she's been right there all the time for whatever is needed. I can't thank her enough -- for being there. I'm not worthy. 

Every day is something new. But every day is a day of growth. Learning. Gratitude. Giving. Appreciation.

Now it's almost time for my night-time morphine. More as I learn more.

So. The Diagnosis Is In

 Advanced Stage 4 Prostate Cancer.

I probably had it when I was hospitalized last year in addition to a lumbar and disc infection, but nothing was done. It was barely mentioned as a Thing. I recall a biopsy was done to test for cancer cells in the bones of my hip. I recall that isolated cells were identified but none were specific for prostate cancer. Thus, the focus remained on clearing the infection -- ultimately successful -- and no action was deemed necessary to deal with cancer.

Now, apparently, it's too late. Oh, they can make me comfortable and that's good -- I guess. Well, the amounts of opioids I'm prescribed and taking are alarming. But on the other hand, I'm not opposed to going that route. There are treatments, but the more modest ones initially undertaken, basically just suppression of testosterone production, aren't doing it, so more radical chemotherapy is to start in two weeks, i think. If that doesn't work then radiation could begin soon after. I get confused about dates. There are so many things going on and moving parts. It's a whirlwind. MD Anderson.

I'm at home which I much prefer to hospital or acute care facilities. Depending on how things go, I'll stay here till the end. 

And that will be? Oh, "we don't know." Could be four or five years. Or more. Or less. But nope. One doesn't live forever.

How much of this do my handful of readers want to follow? Should I detail step-by-step what I'm going through or should I just let it go? There is a whole world out there and I am hardly the pivot around which the Universe revolves -- that's my cat Princess. 

It's a lot to process, and I've just barely started.