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

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.

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.

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.

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.

The Iron diet

Back to my iron diet.  when I was on the first chemo carbo/taxol had some problems with anemia and iron levels.  Had blood transfusion during and after initial surgery and I was determined I was not going to have more, and have any delays during treatment.  So, I added black strap molasses to sweeten my tea, chopped chicken liver (like pate) tons of spinach salad, lentil soup (pureed for digestion) and watched my numbers improve from 8 to 9 to 10.  Over the summer while off chemo it even went to 12.  Iron pills were fine while pregnant but I wasn't in the mood for the constipation that comes with it, especially when already suffering from chemo constipation.  Now, it is an issue again, numbers down to 8, but after two weeks of iron diet, back up to 10.  Hoping this winter to have more energy and be able to get warm.  Last winter I was cold for months, with no hot liquids and hands and feet on ice (a modern torture).  I am so ready to feel better.

Life of a lab rat

this is something I never saw in my future.  I could see myself donating organs after I was dead but not experimenting on me while alive.  I always thought people who were in clinical trials were sad and somewhat desperate.  Someone who knew they were dying and and had nothing better.  In some ways that is so me.  I know that without some new and different treatment I will just get sicker and die and it won't be pretty or glamorous.  It will be painful and unpleasant.  Instead, I respect everyone who is donating their body for scientific purposes to advance healthcare for all.

More numbers

Running some numbers of my last 2.5 years (all the time the CDC says I should live)
36 chemo - about to be 37 in 30 months.
easily 100 times stuck for blood or infusions/ivs etc (thankfully through port)
easily 150 days in hospital or in hospital setting for treatment, doctor appointments, tests, etc.
   so of (912 days, close to 20% in a medical setting.)
so pathetic.  no wonder I feel boring with nothing to talk about but medical stuff.

Chemo-lite

As I continue my lab-rat process, spending time away from home to try to stay alive, I get asked by doctors and nurses how I feel, side effects etc.  I can honestly say despite some minor stomach upset (had that before), fatigue (always have that) light headaches (minor compared to migraines I've been getting) nausea (live with that every day) this treatment is nothing compared to what I've done before.  34 of 36 treatments were much worse so this is just chemo-life so far, maybe because it is so targeted and the nano-particles and little miss pacman is just eating up the cancer and it will all be gone soon.  I hope so as I am sick and tired of being sick and tired.

Planning a funeral- mine

I usually try to keep this short and light.  Recently I was drafting my obituary it's an odd thing to do when you're 55 years old but I'm trying to get all the details in order and so that when I do die everything is ready and to minimize the impact on my husband and my son.  Drafting the obituary I began to really think about my life what I've done what I've accomplished with it.  The overall overriding theme of of it has always to help the underdog of our society people who just don't have a voice.  I truly despise bullies and those who are bystanders - people who do nothing but watch.  When given the opportunity they do nothing.   Truly, cancer is the biggest bully, that must be stood up to and defeated. By funding, by raising awareness, by research.  We have so far to go and I refuse to be bullied and I won't ever be a bystander.  So I work whenever I have the energy and mental clarity to raise awareness and help others find someone thought this disease.  Being a lab rat is just part of it.  

I watched recently as people tried to bully the young woman in Oregon who chose her death when she learned she had inoperable terminal brain cancer and I feel it's a very personal decision I'm not there yet.  But when I am, I know why husband and son will support me and my decision.  Everything will be planned and 

Lab rat #1 is home after first treatment

Happy to be in my flannel sheets with unlimited tv channels but glad to have been a good lab rat for the week.  A few more weeks and a few more treatments then we will find out if the drug is working. It is definitely a different process then regular treatment, lots more blood removed, different level of care, testing etc.  Not as sick as from most drugs or tired so far so good.  Today the facility was so busy in the infusion area one would think they were doing a chemo sale, maybe a two for one?  What kinds of fun can a lab rat have?  Hope to find out.

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.

Now what?

Doxil is no longer working so after yesterday's CT scan waiting to learn what new exquisite torture the doctors have in mind for me.  While it is a relief to no long worry about my skin, eating hot and spicy foods, drinking hot liquids (yes cappuccino you can come back to my life) black toe and finger nails etc, who knows what knew side effects I will have to manage in addition to the usual fatigue, nausea, headaches and so much more.  Oh joy.

the early bird special

It has been a long, not hot, summer.  A few weeks extra off chemo, trying to straighten out my colon, get off all the stool softeners, blood pressure drugs and try to feel human after the long cold depressing winter.  On the rare occasions that I get out of the house for a non-medical reason and try to go for a civilized meal I feel rather like a senior citizen in Florida going out for the early bird special at 5 pm, to eat half a meal and bring home leftovers to eat the following day.  I don't have the energy to go out at 7, instead I might be asleep by then.  Not that I ever feel rested but I can fall asleep then, as the battle continues.  Maybe it is a war?

every ache and pain

Every day is a new ache or pain.  Is it real?  Is it more mental than physical?  Does it mean anything? Do I tell the doctor?  At what point does it become real, meaningful, worth asking about?  It is all part of the vast unknown of cancer.  Instead I just wait every day, to see if it goes away (which it usually does).  And wait some more, and more.  Until science develops enough to keep me alive longer.

Lazy recycling

Since I was able 11 I have been involved in rabid crazy recycling, trying to keep everything we could out of the trash, from wine bottles (we had some kit to turn them into classes) to newspaper drives so we could raise money for the gymnastics team, clothes, plastic, to not using plastic bags and so on.  But the energy drain of cancer has meant that I've lost my focus and now use plastic water bottles which I never used before, to actually sometimes throwing them in the trash rather than recycling.  The guilt is not a good feeling, but the exhaustion is worse, thus more trash and less recycling.

Plug me in

Like a car.  Plug me in to the computer, run the program including blood, and spit out the conclusion, everything that's wrong and the recommended cures.  So much easier that waiting for the results for days, so they can determine we need more tests and even more.  To get ground down by the medical environment and stress or more tests, and a nominal understanding of how to fix programs.  Ah for the day science catches up.

medical tourism

Never thought I would become a medical tourist unless there was some fabulous treatment in Europe that the FDA was too slow to approve.  Instead, my oncologist is moving to Florida to run a wonderful research program and teach.  Boo hop.  Although good for the medical community and cancer research.  Bad for me.  Although I will continue my treatments here, with a supervising oncologist, I will be changing medical plans in November when I qualify for medicare and can travel to Florida to visit and get a checkup twice a year.  Not my favorite place but there are worse places to go, especially in the winter after the one we just had.

ah a summer-like day

The leaves have filled in on the trees, the deer are munching through the weeds and edibles in our woods.  I can breath a sigh of relief that I survived another winter and approach the end of my second year with cancer.  Despite winter depression, I did not add anti-depressants to my repertoire.  I may at some point in the future, but I kept thinking it would all be better if the sun would shine and I could wear sandals to let my feel breath and not worry so much about doxil hand and foot syndrome.  It is hard to believe I have made it through two years and feeling positive about making it to the median for stage 3c of 31 months.  Another step forward.

commercial boredom and hell

It's hard to imagine the boredom day after day, compounded by the cold, and the requirements of being a professional patient.  It is a grind without relief.  As I watch TV it gets even worse, bombarded by hours of advertisements all health-related.  Drugs, durable medical supplies, law suits over health issues, and don't forget those ads trying to be inspiring from Cancer Centers of America.  I wonder how they all afford the ads, what it is all costing us financially and as a society, as I knit and crochet and my mind wanders.  Do they invent these terms and diseases?  Do we really need the handicane and the hurrycane? It is so exhausting in their lack of creativity and the pounding impression that we are all sick and need this equipment, medication or have been harmed by something so we need relief.  Is this what Dante meant - is it hell or merely purgatory? Definitely not heaven.

Subversive knitting

Sometimes we all think about our purpose in life.  Why am I here?  When I'm dead will anyone remember me?  Like everyone I ask these questions in my mind and consider my life.  In many ways it isn't the life I had planned, but it has been satisfying nonetheless.  Certainly since attending law school and working in the legal services clinic, I started a career of helping others with legal issues.  Most of my cases either private or public sector involved helping people who were being harmed by the system or by others, victims, sometimes of bullies (domestic violence, parental violence, hate crimes) or even insurance companies. ( I am someone who always roots for the under-dog and thoroughly despises bullies).  I know that in 22 years of working in the legal field I made a difference in people's lives.  As I always say, my life is really 2 degrees of separation, not six, knowing people who know people, and helping people who help people.  It is certainly true of my more than 25 years in recovery, as I help people who help others and so on.  People tell me that I am inspiring but truly I would rather be healthy than be so inspiring.  I think it is also true of my knitting, crocheting, needlepointing, all the work I've done over the years since I learned, as I made baby blankets, and big blankets, finished needlepoint started by others, or the sisterhood of the traveling scarf, these items have transited into people's lives.  Maybe they keep them.  Maybe they regift them.  Maybe they wear them or use them.  Maybe they sit in a closet or drawer.  But the reality is that these items are all over the world and in people's lives.  It isn't my intention to be subversive, but to spread happy and color.  But maybe it becomes subversive over time, like the concept of paying it forward.  My name and person will no longer be attached to the scarf or blanket, but it will still spread happy and bring color to people who never knew me, leaving a lasting mark around the world.

some new numbers

26 chemo finished in 19 months.    in the last month 2 baby blankets and 2 men's scarves finished.  

that sums up my life, blood, chemo, hospitals and knitting.  pathetic but better than the alternative.

Hibernation view

Each winter for years I have wanted to hibernate like a bear, stay endlessly in flannel sheets and not go out unless necessary.  Never thought I would ever have the opportunity but the combination of cancer, chemo and cold is making it possible this year.  I am fortunate to have a beautiful view from my bedroom and bed into the woods, watching the colors and scenery change along with the wildlife.  Yesterday in the snow was a healthy red fox bounding and playing, perhaps chasing dinner.  The day before it was a large majestic red-tailed hawk with its fresh-killed meal, probably a squirrel, sitting on the ground, then flying off carrying its bloody feast.

Wishing I could fly away too, from cancer and chemo to a fresh start.

ICING DEPRESSION

There are different types of depression. Situational. Clinical.  Manic.  Mine just relates to ice and icing and is as incurable as ovarian cancer.  Knowing that Sunday I have to start the icing routine of the professional patient on doxil, two and three times a day with my hands and feet on ice packs.  It is truly a catch 22.  If doxil stops working and I get to stop icing, then it means my options to stay alive are much more limited.  But if Doxil continues to work then I have to continue the icing.  In the summer it was somewhat refreshing, but in the polar vortex aftermath I am truly dreading it, my eighth treatment with my hands and feet skin peeling, my gums aching, ready to kill for a cup of steaming hot coffee or chocolate.  Too frustrating to describe, so instead I am in icing depression.