I'm tired - so sang Madeline Kahn

I was thinking of this song yesterday, Madeline Kahn in Blazing Saddles, one of the great comedies of Mel Brooks and one which never would get made today. She was hilarious and so talented and died too young at 58, of course from Ovarian Cancer after only one year from diagnosis. I was feeling so tired and I'm sure she felt tired at the end, as do I, a week after chemo, I am just exhausted, pushing myself to eat something but having difficulty finding something worth eating. I suppose I would feel grateful to make it to age 58, but it is a long road to get there, another five years, and I just don't know if it is feasible, much less if I have the strength to get that far, one day at a time. So, I'm just tired.

Surviving more than 1 year

June 8 was my diagnosis anniversary, June 11 my surgery anniversary. Kept thinking about blogging about it, but could not settle my mind enough to do it, especially after attending my son's college orientation weekend. It was wonderful, but exhausting, and I felt lucky to be there with him and my husband. It sas taken me some time to think it through, all of the changes a year can bring, from trial lawyer to professional patient; from working mom to sick mom, from taking care of my husband to him taking care of me. To not caring about what car I drive since I rarely drive anymore. From someone cooking 4-5 nights per week or maybe 4-5 nights per month. Someone with energy to someone without energy and verve. Now, finally, learning to knit, something I have tried before but couldn't get, yet this time it seems to be clicking. How weird is that, the clicking of the needles and the clicking in my mind. This was never where I planned to end up but here I am, just trying to make it through each day and maybe get another year.

Onto the second line treatment - a professional patient.

Two down, four more to go, Avastin and Doxil. CA125 actually went down a little to 390 which we didn't expect at all. We were expecting it to go up for a few treatments before it declined. So maybe this is good. I keep thinking how much work it is to have cancer or other chronic diseases, to keep up on medications, manage symptoms and side effects, and try to stay alive and reasonably healthy in the meantime. Second line treatment - when the first line doesn't work, or doesn't work long enough, well enough. Some websites call it "salvage treatment" - does it mean we're garbage because the first line didn't work? Does it mean this is just to save us, maybe get some extra time but it really isn't going to work? That is a term that needs to be exorcized from the cancer lexicon. So, I'll keep icing my hands and feet, avoiding hot liquids and foods, and see where we end up in NOvember and December.

Statistics lessons

In considering ovarian cancer, I keep trying to understand the numbers. I try to understand the cancer numbers overall too. For example in 2013, the projections are for 1,660,290 new cases of cancer, that's 1600 per day!! Ovarian cancer is about 22,000 per year, or about 60 per day, with more than 14,000 dying each year or about 39 per day. Ovarian cancer is only 3% of all cancers but 5% of all cancer deaths. Yet, no one discusses it, a truly silent killer.

Loss of identity

For many years, thought of myself as lawyer, mother, wife, recovering alcoholic, depending on the moment and what was going on in my world, what would be at the top of the list would be constantly shifting and rotating. Now, always at the top is cancer. With cancer, everything else if fairly irrelevant. If I am dead from cancer nothing else is possible. If I can't get proper treatment and care, nothing else is possible. I feel as though all I am is reduced to a patient, dealing with clinical settings and issues. My life has become narrowly focused, not the broad-based person I've always been, with many interests and activities. Too tired, too worn down. Although the avastin and doxil seem to have had positive effect, dropping 9 pounds of fluid since my treatment on wens. Not terrible side effects like the last chemo, icing my hands and feet like suggested, watching what I eat/drink, but fatigue is always there. Overall, just getting through the day is important. Planning my son's future is next. Maybe a trip here and there when I feel up to it. Cancer kills people, lives, dreams, and it is an epidemic that is running through our country unchecked and unabated.

Poor coverage of BRCA issues by media

Been somewhat following the whole Angelina Jolie coverage and finding it quite deficient. As usual, breast cancer gets the cache' and ovarian cancer is given short shrift. Poor explanations all the way around about detection of ovarian. No one explaining that it ends up more deadly because there is no test, and it is found at stage 3 or 4 and so difficult to treat then. Poor job of suggesting to people with cancer in family to get genetic counseling before getting testing to discuss what they do with the information when they get it, what it all means. Also, poor job of explaining, really no one explained that a father can be a carrier, like in my situation. That for men, it means high rates of melanoma or prostate cancer, testicular cancer etc. Overall, major media fail.

rough few days - second line chemo

Yesterday was supposed to start new chemo avastin and doxil but no such luck. Woke up with wicked migraine and some nausea. Pills not working. food not working. sat with another cancer patient for a while before I was supposed to start my treatment but didn't make it. got clammy, more nausea, could feel change in my blood pressure. usually in those times it drops, this time it was climbing and with high blood pressure can't be on avastin as it can cause high blood pressure. Instead, I ended up lying down on bench in hospital hallway, vomiting. a total nightmare. nurses as always were great. ended up in ER, getting ct scan of my head to make sure cancer had not metastisized to my brain, getting medication for the nausea and migraine via iv, and going to sleep until 5 p.m. coming home, sleeping more. today, did finally get the therapy. ironic how in my life even on my way out I am helping others and teaching. ended up connecting the chemo nurses at the hospital with the doxil cares program, regarding advice about icing while getting treatment, pre-treating and post-treating with ice etc. they said they wished all their patients were like me, but maybe not really. maybe just well-informed and educated, but certainly not ones relapsing like me. this was definitely different treatment. only about 15 minutes of pre-treatment with steroids. no benedryl or zofran. they aren't worried about nausea with this drug and many other side effects of carbo and taxol. just other skin type issues. we will keep icing and no hot liquids and see how this goes. will miss my soups.