Wednesday, July 25, 2007

New Day, New Chemo

On Tuesday this week, I had the first dose of the new chemotherapy. For those who are counting, this is the fourth drug or drug combination since April of 2006, when the first
"preventative" chemo cocktail of Taxol and Carboplatin was served up for six cycles. Then came Doxil (the one where preventing the weird side effects had me icing my hands and feet with icepacks three times a day and fearing stoves and toasters and hot showers). Fortunately, no side effects manifested. Not so fortunately, the Doxil did absolutely nada. But it did come with a great purple gift bag, which I still use, filled with lots of fun stuff. Then I was on Gemcitabine (Gemzar) and Gemzar with Carbo combination. It seemed to be working, the all important numbers were going down, nicely and the belly pain stopped for a while.

Then, at the last treatment of cycle six (with no real end in sight at that point), my white blood count dropped too low to treat me, so a treatment was skipped, then we were on the cruise. When I came back four weeks had passed, and those numbers had elevated a bit (gone up 8 points) but I was told no worries. Within the zone. To be expected.

At the clinic visit, I told the new fellow that I was feeling the belly pain again, and mentioned that my left hip had been hurting for over three weeks for no apparent reason. As I described in the previous blog, the path led to the CT scan and then to pulling the Gemzar/Carbo drugs and switching me to the newest in the drug arsenal: Topotecan HCL (also called Hycamtin). Topotecan sounds like an exotic tropical parrot or a native American tribe from Upstate NY.

(By the way, the hip CT was negative for cancer, I had an X-ray the other day, no results yet, but the pain seems to be subsiding since I had that fall last week...go figure!!)

So the newdrug (Google it, I did) is one that is given to women when the first and second line ovarian cancer drugs don't seem to work or stop working. It is a quick infusion treatment, lasting only half an hour after the pre-medications are administered. So I can be out of there by noon or before, if I get an early appointment, after camp drop off.

I took this on Tuesday, and other than being really sleepy (from the "relaxing" medications they drip in first) and then taking the anti-nausea drugs and steroids, I am finding myself tonight, feeling fine. Pumped a bit on the steroids, so I am awake at nearly 11 PM, which was not the case previously, but doing OK. Trying to fight the munchies that come with the steroid pop.

I am trying to be optimistic still, and hoping this one will stop or at least slow down the progression of the disease and buy more time. At the same time, I am trying to accelerate some of the things on my "to do list" of getting my affairs in order. It's just me, being pragmatic again, but with a bit more of a motivation. So getting it all together, step by step.

Sofie is getting excited about going to Camp Kesem at the end of her summer vacation. This is a free camp for kids who have a parent (or in her case, parents) with Cancer, run by volunteers from Duke, UNC and other places. It is a week of sleep away camp, her first time away from home for more than an overnight. She is a little anxious about missing us, and mostly worried that she might be teased for bringing Yang Yang, which is what her blankie is called these days. But we are all reassuring her that all the kids there have a Mom or Dad with cancer and they will be bringing their blankies or stuffies too. And the instructions from camp even said this!

I will miss her for that week, but I hope that she will be able to articulate her feelings to people who might share her worries. She and Jamie have talked about whether she thinks I might die (at this point, she says she doesn't). She just knows I get really tired and crabby some times from treatment. But today, the steroids helped me be able to push her on a special swing device at the park for a while. Sometimes I understand what Barry Bonds might have been thinking *if* he actually took performance enhancing drugs. They do make me feel more like superwoman.

So tomorrow, back to work. I have a one and a half day Central Development retreat near Pinehurst NC (where there are all sorts of famous golfing places evidently). After the retreat ends on Friday, I am heading to Asheville to see Barbara and Jacque and on Saturday --- Spa Day! It was to have been a celebration of ending chemo in June, but I am still looking forward to it so much. A whole day to relax and feel pampered.

Chemo this time will be three weeks on and one week off. It makes it seem like it is every week, pretty much. I lose track of the weeks, the months. I cannot believe July is nearly over. It seems like summer just started. My work week starts, stops and starts again, I feel like I am not accomplishing much.

In the months to come, I have to see how I feel and then make some decisions about working. If the treatments continue for a long time (as they have suggested they might), that is going to make working anywhere near full time impossible. I love the Health Sciences Library and my colleagues, but they deserve more. My boss has been tremendous all through this, but my body won't get better, and at some point, I have to decide what to do, what is best for me, for them, for the whole unpredictable situation.

Meanwhile, July brought upon it a new period of meeting my deductible and co-insurance cap before they start to pick up the costs for most of my treatment stuff. So not looking forward to the out of pocket costs, thank goodness for the generosity of so many friends who have contributed to the Friends of Debra fund. It is helping support me for all this extra stuff, including the hundreds of dollars of prescription co-pays, the acupuncture, therapies and yes, the massage which really helps with stress, body pain, etc.

More to come as this path continues. I feel like a Wikipedia entry full of information about ovarian cancer drugs, not to mention my opinions about them. But all of this is worth it if I can buy extra time for a life with my family and friends.

Love to you all.

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