Officially back in treatment

Hi all

Been quite a while since I updated. I suppose no news is good news, but that hasn't exactly been the case. Things have been kind of ominously flowing along since April, May, June. I felt pretty good in April. So good in fact that I decided to try my old 2.3 mile walk around Seward Park on a Saturday morning. It was great! I felt so good I decided to do it again Sunday morning. Keep in mind, we had plans to go to Disneyland for a week in May and I wanted to get used to walking again. Well my Sunday walk started off fine, but half way around I started getting very tired and achy. Took me a full week to recover. After that I was worried about the Disney trip, but NO WAY was I going to miss it!

Made the trip and did pretty well for the most part. I had the hardest time with standing around, waiting in line or waiting for shows. I also felt like I needed more breaks than I had in Dec in WDW. We watched World of Color one night and I nearly got sick I was hurting so much from standing around. I eventually had to leave early. I was hurting the rest of the stay as well. Once back home, it took me weeks to recover some energy. And my legs were achy all the time, to the point I needed Ativan or Vicodin to get to sleep. I was in for a blood test after we got back and the CA125 was up to about 38. Disturbing, but I figured some of that might be accounted for by my leg achiness. The oncologist also wanted to me to go get my overdue MRI on my head tumor.

I scheduled the MRI for 6/6 and was to meet the doc right after to discuss. She kept me waiting a long time and finally came in to say some of the scans were missing but she hadn't seen anything on what was there. She said she'd call either way once she had the rest. Two days later I get a call that there is some new growth in one spot. She was going get insurance approval for more cyberknife treatment which was going to take some time, but no rush.

Also in June we had plans to go to New Orleans. My energy had pretty much returned after a lot of rest. I was worried about the heat and humidity, but I love New Orleans and wanted to do what I could. The weekend before our trip I felt, out of the blue, that old familiar pull in my groin that has been a precursor to my hip tumor growing in the past. I had a blood test that Monday and Tuesday they called with the results to 58! Twenty points in a month! However, my oncologist wanted to wait for a "doubling" of the marker and for the tumor in my head to be treated to see if that had an effect on the number.

So off to New Orleans we go. Two days after we got there, I was back to using a cane to get around. It was very hot and humid and sapped my energy quickly, but I'm glad I went. Still had a good time in spite of everything else. The groin pain also eased up after a couple days and I was able to get around OK.

I finally got the insurance OK for the Cyberknife and went in on July 12th for another CT and MRI for treatment planning purposes. Two days later my groin REALLY started hurting again, to where I could barely walk. I was practically draggin my leg around and in a lot of pain. I knew I'd be getting another blood draw on the 18th so I just gritted my teeth through it. I figured I'd be due for another CT scan and we'd figure out what to do from there.

So by yesterday I'm still waiting to hear when Cyberknife is scheduled and waiting for my latest CA125. They called mid-day to give me the treatment schedule: Starting today, 5 days through next Wednesday. I started on steroids for that this morning. My groin had felt better (being a relative term)yesterday and after taking steroids this morning, it was even better. So when the oncologist nurse called to say my number is now up to 98, I thought for sure I would be in treatment again. Instead she says the doc wants to do another test in October after I finish Cyberknife. I said, I finish Cyberknife next week. AND my groin hurts a lot! Though it had been better the last couple days. No real response to that. Hmmm. Makes me wonder if he has ANY ideas for more treatment. Or if whatever they do next basically worthless so why do it until I'm BEGGING for something. I have to say I was shocked.

Any way, I did start Cyberknife this morning. They were great as usual. I asked them if they could get me a disabled pass and they took care of it since they are the only place apparantly still treating me. I will also be on steroids through next week so hopefully my groin will be doing better over that time. And maybe I should get a referral to a PT or an accupuncturist for help with the pain. I also intend to talk to my PCP and the Cyberknife doc about options. And to get more Ativan and Vicodin for the pain. I'm about 1/2 way through my last presciption of 30 -- most of that in the last 2 weeks.


UPDATE

I got a call from the oncologist's office on Friday to clarify that when he said he wanted to see me in three months, the nurse thought that meant from that day. Turns out he meant from the LAST time he saw me, May. So I actually have an appointment in August now, which is much more reasonable.

The leg/groin has been more like it's old self: a bit achy, but mainly bothers me when I walk. Using the cane helps.

I am noticing a little vision problems from the radiation -- mainly a sensitivity to light. I was hanging white sheets on the line in bright sun yesterday and it took several minutes for my right eye to make the adjustment back to indoor lighting.