Facing another birthday

Two years ago it was after Hurricane Sandy and we had no heat or electricity.  They pumped me full of carbo and taxol.  I was thinking, just a few more weeks until December 18, then it will be over probably for a year or two.  I wasn't go back to work but thinking I would have some time to recoup and regroup and relax before gearing up for the next round.  Instead I only got five months.  Now I face a clinical trial next week, the day before my birthday.  Like with all these drugs, it isn't that it will cure me, but may extend my life to a few more birthdays.  This one will be my third with cancer. Last year was as much chocolate cake as I could eat.  This year may be apple pie since I think I would throw up from cake.  I will be in New Haven in a hotel next to the hospital.  Hoping to survive another year, and how exceeding the CDC/NIH and other cancer group numbers.

The rest of my life

Is it rest? as in to rest, relax, do nothing?  Is the better word remainder?  what remains of my life?  So much has been taken away - my career, my hobbies, my energy, my ability to think clearly, my memory?  What remains?  My body in its depleted form, some of my creativity, and not much more.  I take each day as it comes, I prepare for the next form of chemo, and I wonder what to do with my days, what difference I can make with what is left.  I raise awareness of this disease each day, try to help others get through their days, and survive.  Not the life I planned, not the life I prefer but it's what I've got. I prefer not to sleep the days away.

FDA frustration

Back in April the FDA had the opportunity to approve use of a parp inhibitor, a new class of drugs, for sale in the US but for a limited use regarding ovarian cancer.  They declined.  Next week the EU will likely approve the same drug for broad use in treating this disease.  While we wait 1200 women per month die in the US. , 40 women per day.  With avastin it took the US 4 years to approve it for ovarian cancer treatment, while the EU was using it.  thousands died waiting.  Something is severely wrong with this picture.  The parp will not cure us but keep us alive longer until the next drug is approved and the next drug while we find the drug that will keep us in equipoise with this disease, even if there is no cure.

In equipoise?

There is a legal term about when legal arguments are of equal strength, they are in equipoise.  I hear all the time about the battle with cancer and winning or losing, and I have never liked the concept of beating cancer into submission.  I just want to find equipoise, where we can be equal and find some balance.  We can find some way to keep cancer quiet and I can find some life left to live.  It may not be 82, but then cancer may not kill me at 55.  Instead we can find some compromise and way to live together and work toward a balance or equipoise.

Sick and tired

After 2 and 1/2 years I am sick and tired of being sick and tired.  I've decided to stop chemo until I feel better since the two drugs I've been offered have pretty awful side effects and not as effective as what I've been on.  I'm meeting with a new doc to see what he suggests and whether I can be accepted into a study.  I keep thinking there must be some alternative I don't know about, hasn't been presented to me.  I just need a new approach?  The fatigue is endless.  rarely leave the house anymore.

Gems please

So Gemzar it is instead of doxil.  I still would like a cure that comes with unlimited chocolate, especially chocolate cake but since the docs call it gemz, I will settle for diamonds or maybe sapphires with my chemo - please?

Teal up folks

Teal up - paint your toes/fingers in honor of ovarian cancer awareness month.  Still not enough research and knowledge about this disease.  Still no breakthrough drugs.  I still don't qualify for any trials.  So I paint my toes and hope.