Sunday, January 4, 2015

Raising awareness around the world.

Nice to see my CNN post has been picked up all over the world.  Greece, Pakistan, and London to Alabama, Montana, and Missouri.  I'm now the top article beating out Angelina's boobs now.  Raising awareness.  Let's save some lives too.

Saturday, January 3, 2015

Zofran is my best friend.

When I think back over the last 2.7 years it includes thinking of the nausea that has been an ongoing lovely experience. When I was drinking many years ago, I thought Jack Daniels was my BFF, sometimes ending in nights worshiping the porcelain gods of the bathroom, which I hated.  It was always so unpredictable and awful.  Now, it is not much better, just sober so I can really focus on it.   Chemo just does wonders to the body, especially when on a empty stomach.  Lucky me, truly, as I have only vomited about 5 times but I just don't find a joy in nibbling pretzels and my favorite biscuits (lemon) from France, although I enjoy the food and it does help the nausea, I am ready to move beyond this into another phase of life.  Beyond illness, trips to hospitals, a prisoner in my own home because I save all my energy for the trips to hospitals so I don't eat out.  Find it difficult to shop on the rare times I go.  So ready to let get of my new BFF.

Wednesday, December 31, 2014

CNN Blog article

Recently folks at CNN asked me to write a blog piece about my experiences.  It took several weeks of writing and editing, but here it is.  Now if you GOGGLE search for "CNN ovarian cancer" I come up second, after an article about Angelina Jolie and her boobs.  I am honored.

http://edition.cnn.com/2014/12/30/health/cancer-cure-experiment/index.html

Saturday, December 27, 2014

Hair over the years

Over 15 years with my husband we have evolved outside and in, in our relationship and with hair.  This blog has started with hair and continues with hair.  At the beginning his hair was brown, mine brown with highlights, his was thicker, mine was very thick growing in from a short haircut.  Then over the years, he got grayer, so did mine I colored mine auburn.  His got thinner, mine got longer.  Then cancer took us another direction.  Mine was short, thinner, gray.  His got thinner and grayer.  We aged through this disease.  Now mine is grey, long, coming back from loss and damage with each drug I am on.  His is nearly white, thin but he still has some as do I.  We are both lucky to have hair and each other.

Tuesday, December 23, 2014

Be careful what you wish for

Back in August I remember thinking how boring I am, I go nowhere, do nothing outside of medical requirements, little to talk about, wishing I could travel and for a change of environment.  How ironic.  As a lab rat I am every week in a hotel, different hospital, different location, learning the restaurants of New Haven which has surprising good food (D. brings it in for me since eating out is still exhausting).  Living in the car, out of a suitcase that never really gets unpacked.  It wasn't exactly what I wanted since the lab rat life is exhausting but it is different.  Hopefully, working to find the next breakthrough treatment, but I have to be careful what I wish for.

Sunday, December 21, 2014

Expiration Date

Several years ago there was an episode of Sex and the City about expiration dating.  I have lived a life of deadlines, due dates, expiration dates on food and so on.  Now, I am dealing with my own expiration date.  According to the CDC and NIH, I am already a month past due.  This is life, not a library book.  But here I am knowing now that my expiration date was last month, the average life expectancy for someone as sick as I am is merely 2.5 years.  So here I go, passing my expiration date and creating a new one.

Tuesday, December 16, 2014

How much blood can I give?

Today was a big day in the life of this lab rat.  My CA125 was down, cancer was stable, so I was allowed to go on to the next two rounds of treatment.  I had blood drawn yesterday, and five or six blood draws today as I started cycle 3.  Blood draws tomorrow and thursday in the morning.  How much blood do I have and how quickly can it be replaced when I am already anemic?  I guess they, the vampires of the study world,  know our bodies can do it.  In the meantime I am relieved but exhausted, hoping for a long hot summer where I feel well enough to enjoy it.