Results of Today's Visit with the Oncologist

Well, the news is neither great nor terrible...it is probably good news, but I guess I am feeling disappointed because I had high expectations of being in remission since I have been feeling so well. The scans showed no change from the scans in July. The good news is that there are no new tumors and the two remaining are no larger than July. The not so good news is that the tumors remain active and the one in my neck is close to my spinal cord. So the oncologist says that he gets paid to worry and wants to see if the radiologist/oncologist can radiate that tumor again without damaging the spinal column. If so, I will have the radiation and then we will wait a while for scans. If not, I will have scans again in two months to see if there are any changes. I have to think that the IL-2 treatment did work to some extent since I have no new tumors and the existing ones are no bigger. Also, it may take my immune system longer to knock out the existing tumors and hopefully the will have shrunk on the next scans

So I continue to need your healing thoughts and prayers coming my way. Don't worry, I will get back to my positive frame a mind soon. Pema Chodron would say that I was clinging too much to one outcome and need to accept what is and find the positives in that.

L'Shanah Tovah

This is the time in the Jewish calendar of reflection on the year that has past. For me it was such a difficult year, but one that I am completing with much hope for the future. I couldn't have endured this therapy without the support, help and caring love of all of you, my dear family and friends. I am so grateful to all of you and want you to know how much I appreciate what you have done for me. So many of you have contributed to my journey through IL-2 treatment and I apologize if I have missed acknowledging what you did or thanking you in person. I so look forward to the year ahead and know that I have the courage and the support to face whatever comes my way.

Wishing you and your families a sweet year.

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.