Almost back to normal

Just wanted to update all of you on my progress. I have been out of the hospital for a week and except for dry, itchy skin and not much stamina, I am back to normal. In fact, I am off this afternoon to play 9 holes of golf. I am working hard on keeping my mind in the present and not thinking about the scans coming up in 6 weeks that will tell me whether I am in remission or not. Keep those positive thoughts coming my way and I promise to let you know about the results.

Back at Home in Corvallis

It is sooo good to be home in my own space and to know that I don't have to go back to the hospital any time soon! Sophie was so excited to seem me that she tried to play with all of her toys at once! Thought I might get by with only one or two nights of bad sleep but up a good deal of the night last night. I did have a beautiful half hour of sitting outside in the moonlight with Sophie at 2 am.....

Applause and tears

As I left the hospital today the whole staff of the ward were standing by the doors cheering and giving me hugs and congratulating me on my accomplishment of completing 6 cycles of IL-2. I was so choked up that I really couldn't express my deep appreciation for their exceptional care. That sense that each one of the staff cared deeply about me and my success helped so much in getting me through the treatment.

Sleep cycle disruption and insomnia seem to be something one has to get used to on IL-2. I slept for three hours after I got to Becca's this afternoon and then from 8 to 12 pm so I guess I shouldn't be too surprised if I am wide awake at one am. Two of the lasting side effects that gets worse with each cycle are "compartment syndrome" and neuropathy. I was in a tremendous pain last night from both and sadly, Dr. Curti said that they would get better but it could take 6 months. Compartment syndrome is a leakage of fluid into the joints so that they swell and are very painful. My shoulders, especially the right, seem to be the worst. Neuropathy is an irritation of the nerves that causes tingling and pain, in my cases in my fingers and hands. These two side effects exacerbate each other so I many be in for some sleepless nights for a while.

I want to add my words of deepest appreciation to Becca's for the love and support all of you have given me throughout this ordeal. I will have my follow-scans in 6 weeks and am feeling very positive about the outcome. I will certainly keep you all posted on the results and what this journey may hold for me in the future.

And we're done.

So...by 11 pm Mom's systolic BP was back up to 97 and she was feeling a lot better so she okayed a third dose.

Almost immediately that BP number fell down to the 60s and she was put on Neo (the hard-core blood pressure drug that requires titrating every 15 min). Though she didn't get any nausea or diarrhea, she did have chill/rigors that required Demerol and then an excruciating pain radiating down her right arm that took 3 doses of Dilaudid (if I understood correctly) to control.

By the morning her BP was back up in the 90s (still on Neo), the pain was under control, and she was working on getting all the drugs out of her system. But it wasn't fun.

When the head of the IL-2 program stopped by he had a different message than usual. He said that he thought they could probably safely get her through 2 more doses (to a total of 5) if she wanted to wring every last possible dose out of the treatment, but that he was very comfortable with her stopping. She had received 13 doses over cycles 5 and 6 and showed definite signs of responding and there's simply no data or indication about the incremental benefit of a couple of doses by the last cycle. And with her crashing hard with each additional dose at this point it wasn't necessarily worth it.

She had Jon and me come over and we talked about it as a family and were all very at peace with the decision to call it a day for IL-2. Two months ago (after Cycle 4) we had all pretty much decided she was done then, so the fact that she went back and got 13 more doses(!) is all icing on the cake and hopefully will be that extra bit she needs to keep the cancer at bay for a good long time

I'm sure she's feeling a lot of relief right now (under the feverish yuckiness) and all she has to focus on now is letting her body and systems recover. If she improves at a decent rate they'll even let her come back home to our place tomorrow; if not, she ought to be released out by Saturday.

Thanks to EVERYONE for your help and support through these 6 cycles. All of you who came up to be with her in Portland or took care of her in Corvallis are particularly appreciated, but really, it was the love and support and energy sent from everyone, whether you came to the healing breakfasts or sent emails or just read this blog and sent good thoughts. We can't thank you enough.

Slowing things down...

...and hanging in there.

Mom took it "easy" today, holding off on both her 7 am and 3 pm doses. She had to have another bolus mid-afternoon to bring her blood pressure back up over 80 again and was nauseous and generally icky. Her eyes were back not focusing particularly well so she can't read and the rain delays in NYC mean that there's no US Open Tennis for her to watch, a particularly low blow.

After 24 hours off though she was feeling better enough (and the blood pressure was up over 90) that she's likely to get her 11 pm dose. If she can just get one each day that'll be enough for us. (For that matter, if all she has are these 3 we're okay with that too.

Send her good wishes to not have too rough a night (between getting the meds, blood pressure issues, and having napped a ton during the day she's expecting it to be ugly tonight).

I'll keep you updated.

Early Challenges

Wednesday Morning Update.

Just spoke with Mom and sounds like this cycle is going to be a lot rougher than the crazy good one last time.

After her second dose last night she had a very rough night with lots of nausea, shortness of breath, and BP falling to 80/40 around 3 am (requiring a bolus). To top it off she got very little sleep (after getting little sleep Monday night thanks to her dear granddaughter.)

Due to all of this they held her 7 am dose.

So maybe this cycle ends up being more like we expected where she only gets a small number of doses during the week and we call it good before she gets too sick.

Celebrating "Lasts"

We're all used to celebrating "Firsts" in people's lives: first steps, first accomplishments, etc. But this week we're celebrating "Lasts." Today was Mom's last Day 1 of IL-2 Cycles. And as the week continues, the Lasts will pile up until we can celebrate leaving them all behind.

As it turns out, she isn't the only patient on the floor celebrating Lasts this week. There's a man who is also on Cycle 6 of IL-2 and another fellow on the last cycle (19??) of some other therapy. To celebrate their accomplishment of reaching this point, one of the nurses made a delicious chocolate cake with berry filling and ganache frosting and Mom and her fellow survivors all were able to enjoy a piece for lunch before they started their Monday treatment and began to feel lousy. What a lovely gesture from a thoughtful nurse.

Other than that a normal Monday. Mom's request for an even-numbered room came through again so she was able to keep the same floor plan and avoid disorientation. Her three o'clock dose went fine but she had some chills and started to feel kinda lousy. Pretty much par for the course.

I'm going to assume that she's getting her 11 pm dose right now and she'll be 2/2 of 14 as of this writing.

Cycle 6 here I come!

I am off to the hospital at 7 am tomorrow to begin Cycle 6 of IL-2. I am hoping things go as smoothly as Cycle 5 but a lot depends upon how my body is able to hold up against another onslaught of IL-2. So I am again asking all of you to send me your healing blue energy and loving prayers throughout the week. Becca or my other care givers will keep you posted on how I am doing. We are certainly going to celebrate when I am done with all of this!!!