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.

a little new research - very little nanoparticles

Sounds like an interesting process. hope it is perfected soon by Mayo Clinic http://www.sciencedaily.com/releases/2013/05/130521105059.htm

The Alien inside

Everyone who has seen the movie "alien" can always remember the scene where the monster baby bursts out of the man's abdomen and chest, shrieking. That is rather what cancer feels like to me. An alien inside, growing, taking over my body, and something I cannot control. Instead, cancer is trying to return, tamoxifen not working, and back on a new form of treatment next week. Avastin and Doxil here we go. Lovely.

Germphobia magnified

When I was young, I was definitely not germphobic. Then I had kids, and voila, it began. working in a courthouse, trying not to get sick, trying for kids in daycare not to get sick, and more and more I became worried about germs and contagion. I worked hard not to get sick, especially when my father was ill, in and out of hospitals, rehabs, nursing homes, always decontaminating my hands but noticing the positive effects that I was not getting sick like so many others. Since cancer, it has gotten worse. I was so determined during chemo not to get sick and suffer any delays with treatment, I sometimes don't like being in public, hate flying and the exposure to sick people, making my son strip off school clothes and wash his hands as soon as he came home especially before he came near me, and so on. A few weeks ago we were at a program for accepted students at a major university. A parent in one of the seminars who was clearly ill, coughing and sneezing had the audacity to offer to distribute papers that were being passed around. I had to instruct my son not to take the papers so we would not get sick, and got the papers from a different stack and distribution. The sneezing woman likely heard me and gave me a major dirty look. My son and I discussed it later, as I wasn't so crazed about it before I got cancer. He told me he understands because I have a reason to feel the way I do, that I am more vulnerable. Wish people would just stay home when they are sick and not spread it!! I am not ashamed to be neurotic about germs!

Ruled by numbers

My life seems ruled by numbers. CA125. Hemoglobin. Weight. Blood pressure. Don't really let LDL HDL rule me anymore. That is the lease of my concerns given my circumstances. I have to maintain enough weight so when I don't feel like eating I can sustain my hemoglobin and other blood count numbers and not need transfusions or have delays in treatment. Blood pressure - don't need a stroke while in the middle of all this. So far so good on that one. It is all a balancing act while we wait once again, on Monday, to do more blood work and get the results on Tuesday. Is the tamoxifen working? That will be the big question.

Family dysfunction

I always describe my family as normal, meaning they are just as dysfunctional as everyone else's family. My son recently asked me how I would rate my family, including me and my husband on a scale of 1-10 (10 is the worst) for dysfunction, and I felt a 5 since we are pretty nuts, but I've seen worse. This week was not a good week for my family, they moved up the scale to about an 8. After receiving a call from my former husband informing me he wants to attend our son's graduation with his mother, even though he is barred by court order, and that he knew I was sick. I was furious as it was clear he was getting information from my family who I don't talk to, in part, because they talk to this idiot. My cousin who had inadvertently shared information with my mother, believing it would be confidential was furious with my mother. My mother naturally just blames everyone else i.e. my three sisters, for talking to my ex, saying she doesn't want to talk to him but he calls all the time. Yes, because he doesn't work and has nothing better to do with his life!! Who cares that we are divorced since 1998. Who cares that the court has barred him from contacting this kid since 2003. Who cares what the kid wants - no contact with his father. My mother and my family always think they know better, and never ask what someone wants or respects it, another reason to keep them far away from me. Oh and by the way, my mother has doctors, better doctors who are going to fix me. yeah right. Like that one's possible. Is it doctor who has the super secret formula to fix ovarian cancer? Think he or she would be making a mint on that one. It's absurd. The whole group of them are absurd and pathetic and deserve each other. My son, husband and I are so much better off without all of them. Much more peace and serenity. No drama!

Death be not . . . afraid?

Lately in talking to others about my circumstances, I find it fascinating how people respond to the concept of dying, or fail to respond. It is almost a knee-jerk reaction, when I say that I am sick, and dying, the question is how long, 2 years, 6 years, who knows. I get back immediately "don't say that" "you're not dying" "you look too healthy to die" "they're coming up with new stuff all the time, they'll save you," and so on. People seem so uncomfortable with death, with being okay with dying, and worse, to not fighting the good fight against cancer. They seem to expect me to say that I'll fight this, as if it is a fight that can be fought, and to suffer through it. The worst is from people who don't have cancer, and sometimes even from people who have it or have had it, but not those with ovarian cancer. We know the reality and live with it every day. At 53, no matter whether science improves tremendously the next two years, I will not make it to 80 years old. That is reality. I will be lucky to make it to 60. I hope that time is in reasonably good health so I can still travel. But I am in reality and ok with it. Life is life. Maybe I've learned all the lessons I need to learn and on my way out I need to teach a little more.

Breakthroughs for melanoma

Hope they reach this level soon for ovarian cancer, while I am alive and healthy enough to benefit: http://health.yahoo.net/experts/dayinhealth/medical-breakthroughs-beat-skin-cancer

Some interesting new science

Not sure what it means but has some promise for the future: http://www.sciencedaily.com/releases/2013/04/130430092509.htm