Sunday, December 20, 2009

Round two is history

and I feel like history right now, LOL. This time I made it through 6 doses before the side effects pulled me down. Each and every cycle is different... two weeks ago I had rigors almost every dose. This time I had none. This time, my blood pressure flirted with major decline but behaved; my creatinine flirted with outrageous heights but behaved, enough that I could have gone for seven or more doses but I just couldn't do it. And I will admit, being away from home and the girls this close to Christmas made it all the harder. We left for Columbus this time from a party at Jim's cousin's house on Sunday evening. For the first time, Carly sobbed at our departure. I know that the late hour and her fatigue from a busy day played into it but it was still heart wrenching to walk down the street to our car, listening to both of my babies cry while their grandparents and other family members consoled them. I of course cried too, telling Jim how guilty I felt for making my babies cry. Yes, it's temporary. Yes, it's for the best of reasons. That doesn't make it any easier to endure at the time though.

We were able to go home on Thursday, which was better than the hoped-for Friday and MUCH better than the dreaded/expected Saturday. Of course, we once again had to wait HOURS for the discharge papers to be finalized; I was told at lunch time that I'd be able to go home and we didn't head for the elevator until about 4PM. It was a rough ride home; this time I gained 15lb of fluid in about 3 days and my joints were screaming at me, from the major ones like knees and shoulders, to all of my fingers; I couldn't fully bend or flex those until Saturday. The water is coming off pretty quickly even without taking the Lasix that was prescribed; the joint soreness is much improved but I have a ways to go before I don't feel like a creaky body. My sister has Rheumatoid Arthritis; on Friday I told her that I think I can understand how she feels when her meds aren't working, and that I cry for her. It is beyond awful.

Oh, and this time I leave the hospital in a hyPOthyroid condition, with a prescription for Synthroid. I am not sure how long this is expected to last but will check into it. Like the hyperthyroid episode, it is a "good sign" because it's considered an immunological response. In those 6 doses they gave me over 500 million total t-cells; at least some of them have to be working, right? And they had better be... I am scheduled to go back to Columbus on Feb 1 for one day (yes, you read that right, ONE DAY) of scans. Dr. Olencki decided that I could have the brain MRI done in Cleveland since they don't need to compare the current scan to prior ones; it's just the check to make sure that I haven't developed any brain mets along the way. I am tentatively scheduled to be readmitted for Round 3 on Feb 8 and Feb 22. I asked Lori, Dr. O's Nurse Practitioner, what exactly are we looking for this time? Since my case has been such a gray area, I wanted clarity on what would be necessary to continue, given that I have stability everywhere but the one area where they feel the "growth" is actually cancer attacking activity. She said that these scans need to show "measurable shrinkage" of my lesions. That is fair and understandable to me. If I continue to have stability, then that means I am at the end of the line with IL-2. Now, if I have shrinkage but not complete response, (all tumors disappear) then that sets me up for not only a Round 3 but also a Round 4 (AAAAAHHHH!!!) which according to how I count on the calendar, would start about April 19. I also asked how many total rounds will OSU do on a patient. I have heard that it is four rounds, most places. She said they have done up to five *gulp* but that has been rare. So right now we need complete response by Feb 1. Go IL-2 Go! CHOMP THOSE CELLS. Use all of what Ellen calls the "Cancer Killing Goodness" possible, please. I will gladly do a third round if I need to but man, I sure don't like thinking about a fourth. That being said, I will do what I have to do, right?

So for now I am hoping to get my strength back, so that I can work on exercise; that is my next big target. I am looking into using one of the couch-to-5K programs available online to help get me motivated, such as this one. I am not really interested in jogging or running at this time, but at getting in a good walking workout, so I think I can adapt these to help me do that. And if I don't get there in two months, I do it again until I do. My body NEEDS the exercise. My immune system DEMANDS it. I have to do it and I want to do it. I'd go out and walk around the block right now, if making it up the stairs to my bedroom wasn't such a damn hardship right now! I have another motivation, based on recent events that rocked my December. I wrote a long post about all of it during my break week but in my post IL-2 delirium, didn't notice that Blogger was not auto saving, then you guessed it, my hard drive crashed. Haven't had the energy or heart to re-write that post yet, but I will. Lots of ideas are floating around this crazy head of mine but I have yet to commit them to space here. Whether they are worthy of that space remains to be seen.


Deborah said...

I find facing winter conditions when I intend to go for a walk outside to be incredibly demotivating. Do you have any indoor facility available with a treadmill or track?

onesillymama said...

We actually do own a treadmill which right now is being used as a box storage facility, but not for long. Also there is a skyway between buildings at my work facility, that is a 1/4 mile round trip, so I have that at my disposal. You are correct that I won't be wallking outside much in the near future!