Once again, I must apologize for staying away so long! Eeeek! I want to blame it all on my Facebook addiction, but I can't! My blog time is usually late at night after I get the kids to bed. Well, to tell you the truth, I have been soooooo tired lately that I've been going to bed when they do, and sometimes even before they do! SO I'm not getting my time in to write at night. So please accept my apologies! Once again, I'm going to promise to do better. You might have to be a little patient or send me emails to "nudge" me!
Went to the oncologist on Monday and met with my old oncologist who retired in April and had been with me from the beginning. I had my filmmaker following me around (he's doing a documentary, following me outside of my Write Around Portland life) and I knew something was up when the doctor asked him to leave the room. He didn't think this time was a good time to film since we had some "important, sensitive, juicy" stuff to talk about and we really needed to focus.
My CA125, is up again from 134 3 weeks ago to 147. Normal is 35 or below. The lowest I got it after surgery and chemo in the beginning was 22. The highest it's been, was before my surgery and chemo at 174. So 147 for me is high, whereas most doctors wouldn't be alarmed until it was in the 1,000's. For me, nothing is normal or usual. I've always been way out of the norm. Everything about my cancer and this stupid journey has been odd.
So obviously, the oral chemo, Zoloda is not working. I had the holidays off of chemo and my numbers were slowly creeping up. After the holidays I started on Zoloda and infused with Avastin every 3 weeks. The Zoloda is an oral chemo, I take 4 every night and 3 each morning with meals for 2 weeks straight. Then I have a week off and I start again. The biggest side effects that I've experienced have been fatigue and an underlying nausea. But I can still function on a daily basis and drive and live my life, just a little more tired and running late for most things! LOL
Unfortunately, we need to decide now whether I go back to the Oxcilliplatin, that was part of the FOLFOX chemo cocktail I was receiving before. It's what we started with back in August of 06. It's a very very aggressive chemo. It's every other week. It has the most intense side effects. Not pleasant at all. I need to take a lot of meds to get through it and I am pretty much down for a week, and out of commission completely for 2 days. I'm talking not even able to lift my head from the pillow. It's so hard to function and live my life like that. And it's hard on my family. I did 11/12 rounds of it the first cycle, as the naropathy (numbness in hands/feet got so bad I had to stop) and then I got through several rounds of the oxcilliplatin last spring before I had an adverse reaction to it and they had to stop. I had developed an intolerance/allergy to it. Now why would they willingly give it to me if they know for a fact that I have an allergy to it??? That scares me. Because of this, they will have to give me a lot of premeds beforehand. And they will have to infuse it over a 6 hour period of time. EVERY OTHER week. This regimine is so hard to keep up with!!!! Ugh. It's so old. And it's so hard. And I so hate it. I HATE IT HATE IT HATE IT.
We needed to decide on Monday if we were going to switch to this. I had a little chest cold starting and we had run out of time (need 6 hours), so I opted to do one more cycle of the Zoloda and then in 3 weeks switch to the Oxcilliplatin so I can schedule our lives around it. By then hoop season will be over and Dave will be able to drive the kids at night/afternoon I hope. We may have to hit some of you folks up for carpooling/rides as I will pretty much be out of commission every other week. :(
This CA125 is the only indicator we've ever had (sort of) to follow my sneaky, stealthy cancer. It doesn't show up on PET scans. It doesn't show up on CT scans. It's very mysterious and devious. So the rise in the number is the only thing we have to go by, and the fact that I have been not feeling well, have had some pain and have been VERY tired.
That's my update on my health. Wish it was better news.
On a happier note....Spencer leaves for Japan on March 11 and thanks to so many wonderful people and their donations, he is able to go and has spending money covered!! We are so grateful to you all!
I am still on target to go to the Gallapagos in May. I will get this cancer under control again and go get my passport!
The Southridge Skyhawks girls won their first round playoff game and play at Oregon City Friday night at 715pm. The winner of that bloodbath between two of the state's powerhouses, will go to the State Tourney the following weekend.
I promise to add some photos and writings from recent weeks soon! xoxoxoxo