Doing better all the time

Off the Bactrim & Kytril, tapering off the decadron. My head is much clearer and I am starting to have a little more energy. I do still have the clavicle pain and swelling but I am controlling it ok with the pain meds I have. I have to nap every day and I can't take on more than one or two errands or outings in one day yet, but I am building up to the bat mitzvah and I think I'll be ok for that. I may need to rest in between, and the Alger House has a little lounge upstairs that I may take advantage of from time to time during the event.

So, probably not an infection, but we don't know more

The ct scan came back, and Dr Wetherbee said that there's nothing there that he would see as consistent with an ongoing infection - no pockets of material (pus), no signs of toxins, fever, etc etc. He is going to hook up with my oncologist on Monday to go over his thoughts. Meanwhile, I am to stay on the Bactrim and other meds. The swelling and pain persist but are not so debilitating as they had been, so I figure I'll just live with it for now until we figure out if it's something important or not. Glad it's not an infection, was not looking forward to having to worry about where that was going.

New CT scan tomorrow

Looks like it is infection, Dr Wetherbee is sending me for new imaging study to get a better sense of what's what. I may need some sort of procedure to drain the infection, will know more after tomorrow's scan. Meanwhile, I am staying on the Bactrim, etc.

Infection's back...we think

The swelling & pain are back, have migrated to the right shoulder. I don't know if it's because I was using the arms more, or because we started to "step down" on the pain patches and steroids, which may have been masking the underlying infection, or what. I am going to see an infectious diseases specialist tomorrow, but it looks like I'm going back on the Bactrim. This time, we're not going to let the side effects run my life, so I'll be back on the steroids and kytril. Will post more when I see the new doctor.

Doing great

Here's how things are different from a couple weeks back: I can read (mostly magazines, still) , do my logic puzzles, watch TV without losing track of what's going on, get calls made and get things done. I am eating just fine -- but with the decadron, I have to resist the urge to just pull the chair up to the fridge and settle in for the day!! My mood has been significantly better, and I have been able to be much more present for Alix and Albert. Very happy about all of the above.

Update - good news

I had a brain MRI yesterday to rule out any tumors there that might have been causing the vomiting & some other symptoms. Results back today, no tumors (whew....). Saw the surgeon this morning, looks like the hole in my chest is closing nicely, he doesn't need to see me again until I am ready for a replacement port. Hopefully we can put that off a long while. Next chemo not til the 23rd of October.
So, a good news day! Healthy happy sukkot to all.

Ups and downs

I had chemo last Monday which went ok, and we decided to stop the neurontin, which wasn't doing anything positive and might have been adding to the nausea. Not sure if that was true or not -- have been terribly sick all this week -- but the withdrawal from the neurontin was its own nightmare. Anxiety attacks, insomnia, you name it, on top of constant nausea. According to Ruth, the nausea is not related to the chemo, but if not that, then what? Finally came up with a new combo-- decadron (a steroid) combined with kytril (an anti-nausea pill) which has given me a couple of good days. Fingers still crossed. Weight fluctuating, but at my lowest yesterday, it was 53 lbs from my starting weight in April. Gatorade is my new best friend.
Hair seems to be growing in, unexpectedly. Short thin fuzz, mostly gray. Will try to post more as I feel better.