Wednesday, August 22, 2007

A More Somber Update - And Reader Advisement

First of all, the reader advisement: when I write these honest blogs about what is going on, it still doesn't mean I am on my deathbed. I don't have that "cancer patient look, all sucked in cheeks, ashen color or skin and bones. Not hardly. I don't even look sick these days, or so most people tell me. My color is good, I have hardly lost much weight, I am not walking around with that queasy look and except for my energy waning so much more quickly over the day, I look kind of "normal". Whatever that is for me. Oh, and my hair continues with its "chemo perm" all curly and wild. Especially assisted by the humidity that continues to plague my state.

But the news here is not so great. I went in to clinic on Tuesday this week and my numbers, the CA-125, had climbed - a lot. Into the high 300's again, and it was under 100 in mid-June. Not good news. The Gemzar evidently had been working, but just stopped. I have done one cycle of this new drug (Topotecan), which is three consecutive treatments, then one week off. Tuesday I started cycle 2, and I hope with another cycle the numbers start going down again. This time, they added Avastin (made right there in the Bay at Genentech). This is given and clinically tried with lung and colon cancer, is not yet even on the website for Ovarian but evidently has shown some success in earlier stage trials. So I am going to try this too, hoping it will "boost" the effects of the Topotecan.

If you Google any of these drugs you will see in clear print, what is up with them. Especially the Avastin site, where it is described as shown to "prolong life". Not cure, not put into remission, just add time. If you read more, you will see that there are some scary side effects, too, like bowel perforation. I will very mindful of any changes and zip myself to the ER at any sign of pain in the gut!

That is the tough and scary part of what is going on now. The drugs don't seem to be working, the tumor is growing (I can feel it being larger) and it hurts. Not worst pain in the world hurt, but it makes its presence known on a pretty much daily basis, reminding me that it is there.

And so I am facing some tough and challenging choices. I asked my doctor the other day, what would he say about the idea of being on medical disability and he said "if I were you, I would be on it already". He knows my situation of being a parent of a young child (he has met Sofie) and he said, if it were just me and work, and that were it, then maybe I could push through, but being a parent is my number one concern. That, and having enough resources to take care of her while I am alive. I could get short term disability from work, but that is fifty percent of my salary, so I would have to supplement (from my not to be needed retirement fund, not huge, but OK for short term) and then Cobra my insurance, which is expensive. That would last for a year, then unfortunately, the State doesn't qualify me for long term disability until I have five years of "service" and I would be short by 1.5 years. And probably in no shape to come back to work anyway.

So, I struggle with all this. I don't want to spend time at work, I have trouble focusing when I am there, there is so much else on my mine. But work has been so wonderful to me, and I feel so badly that after all this support, since January of this year, nearly 8 months, I would just leave them. So I can stretch the share leave out more, and work 16-20 hours a week, at most. Until I just can't. I wish the long term disability picture were better, if I had read the fine print when I took the job (but who does on that sort of thing) I would have bought private long term disability for the first five years, as extra coverage. At least I have a good life insurance plan for Sofie. But I will lose all the work life insurance after I leave. It all makes no sense, is hard to figure out and I am trying hard to listen to my heart and not just the voices in my pragmatic head, which are all about being responsible, with a bit of Jewish guilt thrown in for good measure.

I am tired all the time and really afraid that working even sixteen to twenty hours a week, will compromise my ability to parent Sofie as well as I want to. Jamie is pitching in a lot of evenings so I can take it slower, but I miss doing things myself and I know tiredness can make me shorter tempered or cranky, and I don’t want that. I wanna be the fun mom too. But Sofie has already informed me I am not much fun anymore and is also asking to spend more time with Jamie. I know she is taking care of herself, she knows a lot about what is going on, whether she opens up to me and talks about it or not. But it hurts. Tonight when I read to her and then we did our little song, I just stroked her shoulders and hair, I love that child so much it hurts. I cannot imagine sometimes that I won't get to see her grow up, as challenging as I know her pre-teen and teen years will be. But she is so little, I have had only five years with her and it isn't fair. I waited all my life (or so it seems) to be a mom and now, I worry that I will leave her and break her heart. And then I worry that she will forget me. I know she loves Jamie and that although I know it won't be easy, they will be OK, but I want to be in on all this growing up stuff.

I have to stop now, I am getting teary. I continue to be hopeful that this new drug combo will buy me more time, maybe even put me into some sort of slowdown on the growth of this cancer. I hope so.

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