September 26, 2018
Well the calendar got away from me again. Joe had his last radiation treatment on the 10th as I mentioned earlier. It has taken about 2 weeks for the nerve pain to begin to calm down but it still isn’t gone completely.
It didn’t help that the roofers came to repair the roof on Friday the 14th and it took them through Wednesday of the following week to get the job all done. But it’s finished and we’re good to go with an additional 20″ of insulation in the attic, all the bad decking replaced, proper venting installed, and new trim put up. They were able to reuse the metal as it was still in good shape and that saved us about $8,000. whew. But the hammering and banging and thumping about drove both of nuts. Plus all the dust sifting down into the house sent both of our allergies into red alert.
The 13th was his second infusion of Keytruda. He’s scheduled for the next one on October 4th. They’ll probably do another scan just before the 4th infusion 3 weeks later. The doc explained that right after the infusion you can get a ‘flare’ on the scan because the immune system goes into hyperdrive (my word, not hers).
He’s still not eating enough. It isn’t that he has no appetite but he finally confessed that food tastes like ‘mud.’ So I caved and bought some Boost (so much SUGAR in that stuff it should be illegal) but it gives him vitamins and calories. I try to coax him into a homemade smoothie at least once or twice a day and tonight he asked for mac & cheese. Didn’t finish it though and I gave him a small portion. He has lost so much weight.
On the plus side (and yes there is one) he is starting to come back to his normal self. Right now he’s on his computer playing World of Warcraft. He hasn’t done that in a couple of months. He’s looking better as well. And he’s much more coherent in spite of still being on morphine for the pain.
Now that all the hullabaloo with the radiation is done it’s a little calmer around here. His brother, Tom, was here over the weekend and dragged him out for a drive a couple of times and Joe even walked a little with his wheeled walker that Tom lent him. If I could get him to do that 2 or 3 times a week we’d really be making progress but he’s so worn down right now that may be asking too much.
Oh and I finally took the clippers to him and gave him a buzzcut. He looks a whole bunch better plus I can keep an eye on his scalp where they removed that bit of skin.
And that’s all there is to report right now. We’re both keeping a positive outlook and we talk about when he gets well what we’ll be doing. Positive thoughts, prayers, white light … whatever, are all still welcome.
September 11, 2018
He’s losing hair around the two spots they irradiated. He does, indeed, have a small lump on his scalp behind his ear. The scalp pain is becoming manageable thanks to the morphine. However, it wore off a bit ago and now he’s really hurting again. I wasn’t watching the clock like I should have been and he’s come to rely on me to give him his doses when he needs them. I’m still trying not to fall into a full blown anxiety attack. Today was not a good day.
Tomorrow he sees the oncologist and has a lab draw. Thursday is the infusion. Then, hopefully, all will be quiet for the next 3 weeks as I try to put some weight back on him and he recovers from the radiation.
We’re both exhausted.
September 10, 2018
Today is the last radiation treatment. His scalp pain this morning is down so I’m even more convinced that the pain he’s been suffering the last week or so relates to THAT rather than those cancer cells which were stomping on the nerve. We’ll see. We’re both hopeful, anyway. Now to get him off the morphine.
His second infusion is Thursday so other than those two things, and one doctor’s appt., it’s going to be a calm week. For him.
I spent the weekend wrestling with an attempted anxiety attack. I’m pleased to report that I won. It was close there for a while but this morning I woke up for the first time in several weeks feeling OK instead of a sense of impending doom.
In the meantime, here’s a picture of one of the cats I’ve been feeding. I’m pretty sure he belongs to someone as he’s VERY friendly and actually tried to come inside the other day.
September 8, 2018
So people are starting to call … guess I should update this page.
Joe has one radiation treatment to go on Monday and then he’s done with that. It’s a good thing because his scalp is still giving him so much pain he can barely handle it. My guess, and that’s all it is, is that the radiation is causing most of the pain at this point. He insists there’s a “lump” on his scalp. I had to take a picture and show him it was where the surgeon removed the patch of skin/lesion so they could figure out what was going on. It had not healed completely when they started the radiation and it is pretty darned angry looking.
His second immunotherapy infusion is scheduled for Thursday. The large tumor on his lower left back has appeared to have shrunk by about half in the last month. So I’m hopeful this means the Keytruda is working like it’s supposed to.
Three weeks after the 2nd infusion they’ll do another PET or CT scan to see if the cancer is retreating.
In the meantime he is on enough morphine to keep the pain barely at bay but to thoroughly confuse him. It doesn’t help he isn’t getting a lot of sleep although I will say that today while I was at the store he dozed off in his chair so he is cat napping but a decent full night’s sleep continues to elude him.
The other part of all this is he has lost more weight which he could ill afford to lose. It wasn’t that we were trying to keep him on a ketogenic diet so much as he simply was not eating enough. The pain on his scalp was exacerbated by the sciatic pain in his right hip/leg and he was spending far too many hours in his room with the shades drawn. I have tried to get him to spend a little time out on the patio and today, after a week, he went out again for a couple of hours.
After talking with the dietitian, I’m putting more carbs back in his diet and trying to see to it he eats a little something every 2 or 3 hours. I cut back on the fat in his morning power green smoothy (since fat keeps you satisfied longer I figure a little less there will mean a few more snack/meals there) and got his favorite soups at the store. He had half a bowlful along with a few Ritz crackers and a serving of sugar free chocolate pudding. My one rule still is NO SUGAR (the white granulated stuff). He gets FAT in lieu of sweets. Much better and more calories.
So there you have it. We’re still here, if stressed. Please keep us in your thoughts and/or prayers that after the radiation on Monday he will begin to see an improvement in the scalp pain.
I’ll make an effort to update at least once a week. If anything arises between times I’ll post then.
August 27, 2018
It was a relatively quiet weekend. The occipital block held through most of the weekend. He’s been in pretty good spirits in spite of the continuing pain. This week will mostly be getting to the radiation treatments and waiting for the scalp pain to quit. If it doesn’t they may do an ablation which would last, so I was told, about 6 months. I hope it doesn’t come to that and that the radiation will kill whatever cancer cells have taken up residence on that nerve.
August 25, 2018
It has been a busy, very stressful week for the two of us. It started last weekend with 3 visits to the ER because of his scalp pain. Monday he had a CT scan which showed the cancer has spread. It is NOT in his bones or skull, just on his scalp and he has developed at least 3 visible tumors on his torso.
Monday we met with the radiology oncologist. Nice but a little intimidating. He explained things and then they took Joe back to make the mesh mask that’s used in the radiation treatments.
Tuesday it was over to the hospital to Radiology for another occipital block. The one Sunday evidently missed the nerve and he had almost no relief.
Wednesday we met with the nurse practitioner who, it turns out, lives across from our lot in Osprey. She was a little concerned when I mentioned we were finally thinking about building. Her first words were something to the effect she hoped we wouldn’t block her view. LOL.
Thursday he finally got his first immunotherapy infusion (they are giving him Keytruda, the same drug given President Carter). He pretty much sailed through it with no problems. So far he’s still feeling ok. The scalp pain was still pretty intense.
Friday I called and asked about the radiation treatments. I figured from what they’d told us he wouldn’t be getting any of those until Monday and the woman I spoke with pretty much said the same thing. I explained about his scalp pain and was told again that it might take up to a week before the radiation stopped the pain.
About 12:45 we got another call this time from the radiation tech asking if we could be there around 1:00 to 1:30. I asked if this was for a treatment and he said yes. Boy did we ever get moving! They also made arrangements with Radiology to give him another block at 3P.M. Such RELIEF!
So … so far, so good. He’s scheduled for 10 radiation treatments over the next two weeks. His next infusion is September 12th. In the meantime I’m trying to coordinate some acupuncture treatments for the pain, line him up with an energy healer, figure out what to feed him that fits a ketogenic diet and keep track of his meds and appointments.
Next week all we have so far is the radiation appointments. Deanna will be coming to clean (thank goodness! It’s been 6 weeks and I can barely keep up with laundry and the kitchen!).
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