This Ain't no Monopoly Game

The good news continues on the cancer front.  The markers in my blood continue to drop slowly but steadily.  I can no longer feel the tumor between my ribs or the one in the muscle wall of my lower abdomen, and by "feel" I mean either with my fingers or by the internal muscle pain that I felt previously.  

I have just finished my twelfth treatment of Caelyx and realised that I have been taking this molecule for a year now.  It is by far the easiest treatment protocol that I have had yet and the best part is that it is working. 

Three years ago this month I was diagnosed with cancer.  It seemed that my world had crumbled down around me. I remember my first appointment with Dr. D and how afraid I was, yet there was something so reassuring and hopeful about her own lack of fear.  So unlike the scenes in the movies wherein the doctor announces “you only have X months to live”, that meeting and all subsequent ones have been totally devoid of any futurology.  I remember studying the statistics “60% of women with Stage 4 ovarian cancer didn’t live 10 years” and thinking then that ten years would be a pretty good deal.

The first year was very hard physically and psychologically.  The chemo was tough, I lost my hair, I was exhausted, and then there was the surgery and the recovery after that.  I can remember being so happy to be transferred from intensive care to a regular hospital room, and the first night that I felt human enough to watch a bit of TV,  thinking that “Top Chef” was the greatest thing I’d seen on the air.  I must have been heavily sedated.

Then there was remission and I thought I had beaten the beast.  This led to a very short period of euphoria, during which time Alec and Virginie were married.  That certainly added to the illusion of “everything’s gonna be all right from here on out”.

The second year was heralded in by the news that the remission was over and it was back to business – multiple mini-tumors had appeared here and there in my abdominal cavity.  This was even harder psychologically because the first year it seemed that there had been a clear goal:  have the chemo, shrink the big tumors, cut them out, more chemo and then school was out.  Now we were faced with finding a new molecule that would work.  For me the months of “ try, test, fail, try again” were grueling.  Although Dr. D assured me that there were plenty of candidate molecules, I didn’t feel reassured until we finally hit upon one that gave positive results.

So year three has been coming to terms with living with cancer as part of my routine.  According to the stages of grief, I guess that I have finally reached the acceptance stage.  What do I have to grieve about if I’m still alive?  I would say that I had to accept that my “normal” life or my life as I knew it was gone and things were never going to be quite the same again.  What I didn’t realize is that because of the experience of having cancer, my life could actually be richer and more meaningful than it was before.

At the end of this summer, Mr. T and I decided to take advantage of my good medical reports to take an extended trip to the States to visit friends and family on first the East Coast and then the West Coast.  It was a pretty ambitious itinerary but worth every minute of it since we were either re-connecting with folks we care about or spending time on our own.

I had the unusual opportunity to finally meet “friends” that I only knew indirectly through Facebook or by email, one being an ovarian cancer survivor.  She invited me to participate in an ovarian cancer awareness run/walk that I accepted. 

Yet another new experience.  So I found myself on a big mall parking lot, surrounded by a sea of folks all out to support ovarian cancer survivors or to commemorate loved ones who had succumbed.  Here in Europe, the Caelyx molecule receives special funding for its production since ovarian cancer is classified as a rare disease.  But there are so many people in the States, that even a rare disease event can produce quite a turnout.

Since I was a “survivor”, I received a special T-shirt and was invited to sign the 2013 banner.  It made me start thinking: what does that mean to be a “cancer survivor”? Is it someone that is just still alive but who is actually living on borrowed time or is it someone who is “cured” ? But aren’t we all just living on borrowed time?  I always thought that a survivor is someone who makes it through some catastrophe and comes out the other side safe and sound and at least somewhat sane?

According to that definition I don’t feel that I have “survived” my cancer, since it is a day-to-day part of me, but I do feel that I am a survivor.  I survived moving from my idyllic childhood surroundings of the lush nature of southern Louisiana to the sterile, concrete city of Houston, and realizing along the way that I was not a Cajun after all but just a regular WASP.  I survived the disbelief of my father’s untimely death when he was only 52 and I was 14 – “But this only happens to somebody else!” – and the subsequent move to Jackson, Mississippi, home of my mother’s people.  I survived adolescence in that apartheid environment moving from an all-white high school to a previously all-black high school in January 1970, mid-way through my senior year, when the Federal desegregation act was enforced, and a 6 foot wooden cross was burned in our front yard because my mother chose to respect the law.   I survived the failure of my first marriage and having my naïve dreams of “just being together would be enough to be happy” shattered, and then, in the aftermath, trying to rebuild my life with a useless diploma and part-time responsibility for my two small children.  I survived the aimless years of "sex, drugs, and rock-and-roll" which I would have been better off experiencing before rushing into a teen-age marriage at the age of 19 and having my first baby at the age of 21. I survived my mother’s “suicide by breast cancer” soon after I had humbly asked her to help me go back to university and having to come to terms with the realisation that I was an orphan at the age of 28 and had no one to rely on except myself.  I survived going back to school in Computer Sciences, because it was the rational choice for future employment and unfortunately had nothing whatsoever to do my passionate interests in biology, and even making it through graduate school – how else could I justify my graduation age if I didn’t at least have a Master’s? I survived my brother’s suicide several years later, being deeply affected by the anger of having been betrayed and abandoned with no one from my nuclear family left, while trying to maintain some manner of tolerance and respect for his decision.  I consider myself a survivor, not of ovarian cancer, but of life, that no matter what gets thrown in my path, or no matter how hard I get knocked down, I just keep getting up, brushing myself off, and trying to do the next best thing.

I’ve also come to realize that having cancer is not a “get out of jail free” card; it is not some karmic shield that prevents other shit from happening in my life.  I can have cancer and still get to experience death in the family, loss of loved ones, breakdown in meaningful relationships, illness, and the inevitability of aging.  The other side of the coin is that I no longer live in a state of fear because of my cancer.  Instead of thinking that ten years would be pretty good, I’m more inclined to think that ten years is just getting started.  I can see myself attending my grandchildren’s weddings, seeing them graduating from college, watching them getting set up in life, maybe even seeing my kids becoming grandparents themselves. 

Now that’s something to look forward to!

Vacation Postcard

The long-awaited and much planned-for summer has not only arrived but is flashing by.  Autumn is in the air in the early mornings despite the heat that arrives during the day.

Besides planning for vacation time with our grandchildren, one of our big events on the calendar was receiving the results of my complete battery of exams (PET scan, IRM, heart-functioning, etc.) from Dr. D in late July.  The good news is that the metabolic activity of the “mini-tumors” has been significantly reduced, some even going to “zero”, although the physical size has not been significantly affected.  We continue the current treatment with Caelyx which is one of the easiest treatments that I’ve had so far:   treatment once every month,  short drip time, and essentially no side effects.  This excellent news allowed us to dive into the summer with few worries and much hope.

Another big change for me has been my forced retirement, with invalid status, which allows me to have full retirement benefits even though I had not accrued enough years for full benefits.  Although I knew that I would never return to work, the fact of actually breaking that contract and moving on to retirement was more like closing an entire book rather than just turning a page.  I feel a bit nostalgic about the end of my professional life, but am so grateful to have so much free time and to feel strong enough to enjoy it.

Summer has meant lots of gardening, spending time with Émilie, Charlotte and Lola (all the same week!) in Heuchin, and then vacationing in Brittany with Mr. T and Charlotte.  We ended our trip in Bovenant with Alec, Virginie and Jasmine.  I stayed on to baby-sit Jasmine while Alec and Virginie undertake their big project of erecting the two 40-meter greenhouses that will be the heart of her organic vegetable farm.  Family and friends come to give a hand just like an old-fashioned barn raising.  This whole experience allows me to see the role that grandparents play, and have always played, in a tribal sense:  holding down the hearth while the younger generation works hard to put the food on the table.

Life goes on and I’m so thrilled to still have a part to play.

Before and ‘aphte’r

I intended to write in my blog after my last chemo treatment and have just kept putting it off.  Blog burnout?  I think that I’m beginning to find my cancer rather boring and just a series of constraints more than a potentially fatal disease.  I don’t wake up every morning with my first thought being “Oh my God, I’ve got cancer” as I used to.  Now my first thought is usually “I hope he (Mr. T) makes the tea, I hope he makes the tea.”

During my last meeting with the oncologist in mid-March, she gave us the reports from my last PET scan and MRI:  slight decrease in metabolic activity of the micro-tumors, but no perceptible reduction in size.  She decided to continue the treatment with the Caelyx molecule, but to reduce the dosage because of the problems that I had been having with side effects.

This molecule is highly toxic and its effects are cumulative.  For the first three or four treatments, I had no particular side effects, and then, while visiting Alec and Virginie, I had an introduction to the challenges of mouth ulcers. In French, these are called “aphtes”, pronounced “aft”.  (These are caused by a yeast infection brought on by the weakened immune system that is unable to fight off this particular invader.)  It was so painful that I had a hard time talking, chewing, or swallowing.  I contacted the hospital to make an appointment with the laser therapy service and went there as soon as I got back.

Despite being armed with a special mouthwash and having access to the laser therapy, the next treatment produced mouth ulcers that were even more painful.  I tried to “reason” away the pain by saying “This is ridiculous.  It’s only a little ulcer on your tongue.  Think of the people that have bone cancer; that must really hurt.”  But there is no reasoning with pain.  It just takes over your entire thought process and dominants every waking moment.  It’s as insistent and unbearable as a crying baby.  “Fix this! Fix this!”  I never thought that I could decide NOT to eat just because it hurt so much to do so.  Effective, but unpleasant, way to lose a couple of kilos.

After two episodes like this, Dr. D. decided to reduce the dosage as I mentioned, and fortunately this seems to have worked.  After the last treatment, I was able to successfully ward off any ulcers by persistently brushing my teeth, using the special mouthwash, taking the anti-fungal medication, avoiding acid foods, and going to the laser therapy preventatively three times a week.

It seems now that having cancer is a more a question of constraints and routines rather than some medical drama.  I spoke with a friend the other day who has lived through his wife’s cancer and that of his father; he told me that there was life “avant et après” cancer, and that you can never go back to “avant”.

Now when I plan my day, I start with those things that I must do: take my vitamins, my medication, pay my bills, or follow up on my administrative tasks.  Then I do the things that I want to do: sew, knit, garden, surf on Facebook, entertain grand-children, snuggle with the cat, bake a birthday cake, listen to my favorite game show on the radio, or potter about the house.  

Since I can’t go back, I can only go onward and not be too preoccupied about where I’m heading.  We’ll worry about that when the time comes.

Thanks for a New Year!

Since Thanksgiving comes and goes here without my noticing it, I thought that 

instead of making useless New Year’s resolutions that are only frustrating in 

that they are invariably doomed to fail, I would start off the year by listing some 

of the things for which I am thankful.

Part of this exercise is to stave off the blues that accumulate with the dark 

wintry days:  days of clouds hanging so low that you have to stoop to go outside, 

days so dark that you wonder why the sun even bothers at all, days so full of rain 

that even the cats won’t go outside.  The blues that come from the uncertainty 

of the new treatment; treatment number three since last March and still no sign 

yet of real progress.  The blues that come from wondering what the hell those 

cancer cells are up to in the meantime  - hibernating? mutating? planning a new 

assault? giving up the ghost?

So let me think about those things for which I’m grateful.  Here we go, in no 

particular order.

Jasmine, my newest granddaughter, born on December 26^th.  Her name evokes 

intoxicatingly scented exotic, night-blooming flowers, and she is as beautiful 

as her name. I was privileged to be there for her birth and spend the next few 

days visiting her at the maternity in Nantes, watching Virginie and Alec begin 

their apprenticeship as parents.  No user’s manual, only being patient and 

attentive, following one’s instincts and, sometimes, other folk’s advice.  

Actually, it’s really Jasmine who is the teacher.

Alec and Virginie and their Brittany experiment.  It does me a world of good to go 

and help out on their house construction. I feel that I can still make a useful 

contribution.  Being out of work for the last two years and recently finding out 

that my status will soon change to “invalid” meaning a forced early retirement 

takes some of the determination out of my stride.  Showing up at their place where 

there is SO much to be done and where I feel welcome really recharges my 

batteries, even though I do come home tired out.

Barbara and Michel and the generosity that they have always shown to Mr. T 

and me regarding Émilie and Charlotte.  Thanks to them we discovered our new 

career as grandparents and it is the most remarkable experience in true love.  

Émilie teaches us about sensitivity and shyness – she reminds me of the fox 

in the Petit Prince that has to be tamed before he can be loved.  Charlotte is 

my “âme soeur” and always has been from the moment that I first held her. 

Such openness and understanding, the very definition of being on the same 

wavelength.  There’s no explaining it, there’s only enjoying it.

Chloé and Philou and their daughters, Lola and Alma, the newest star in their 

firmament. I’m very grateful that Chloé had the wisdom and courage to turn the 

page on our personal differences and old wounds in order to make the way 

easier for my relationship with Lola and Alma.  A wise investment for family 

harmony that Papet and I enjoy regularly and share with Mamie (Chloé and 

Barbara’s mom).  Lola is so much like Chloé when she was a kid in her manner 

of playing – plays well alone and rides herd with a firm hand over 

her dolls and stuffed animals.  “Et je ne veux rien entendre!”  Alma is still a mystery

waiting to be discovered behind those blue eyes and buddha baby cheeks.

Madelaine and Richard for bringing us Élodie, the spitting image of her mother 

at that age but with her daddy’s dark eyes.  She’s affectionate, sociable, and 

oh so clever.  It has been such a treat to witness her “trilinguisme”:  French, English 

and baby sign language.  Soon they will bring the first grandson into this world 

of girls, to which Charlotte remarked “Enfin, un cousin!”.

My friends.  Long-lost friends, newly found friends, neighbor friends, younger 

friends, older friends. Friends from way back which make me feel that we have 

been in step all along even if it’s been forty years since I have last seen them.  

Newly found friends make me feel that it’s the here and now that counts.  I’ve 

learned that you’re never too old to make friends. I love going to the market or 

aqua-gym with my new friend, Tania.  We walk arm and arm wherever we go and 

it feels so comfortable and natural. Neighbor friends are a very special species -- 

they are much like family in that you don’t choose them, they come to you as part of 

your destiny.  If you’re lucky like I am, they then become a part of your family, a 

special familiarity that grows from proximity and kindred spirits. Far away friends that 

I rarely see but who grace my mail with a note or gift from time to time, just to let me 

know that they are thinking of me. 

My aunties and uncles.  They’ve known me longer than anyone else and they 

are always there for me.  Their families are growing and growing and they are 

even great-grandparents now.  Amazing how life just keeps flowing on.

My feline friends, Aïchat and Moïses.  Aïchat is a bit of a scaredy-cat who is 

commonly classified as a “pot de colle” (gluepot).  She’s a one-eyed kitty that 

we rescued about five years ago and can best be described as “cute, but kinda 

dumb”.  And then there is Moïse, “mon gros chat d’amour”, who is my 

ever-present companion.  How many hours have I laid in bed, especially that 

first year, with him cuddled up next to me and me just tuned into to his purring, 

a soothing vibration that permeated my body and mind.  You cynics out there may 

think that he’s only in it for the warmth, but I have never seen a cat in all of my life 

that was so attuned to associating affection with faces.  He reaches out and touches 

my face with his paw; he has invented the technique that we call “kitty kisses” 

wherein we rub heads together as a greeting.  Ok, sometimes he does drool on me; 

that’s a downside.

Mr. T.  (I did say in no particular order,)  This year we will have been together 

for 24 years.  That’s certainly a record for me.  We started off madly in love, and 

then there were times when we were just mad.  It has been a roller-coaster ride 

from the beginning, and I sometimes think that we are still together because we 

are the only ones who can put up with each other.  But since I’ve been diagnosed 

with cancer he has amazed me day in and day out.  He was never cut out to be a 

nursemaid and he still isn’t, but he is steadfast and caring and watchful.  

He reminds me to take my medicine and helps me keep my agenda straight 

when I have a lapse of memory.  He’s always there for the important doctor 

appointments and has only missed one chemo session.  He cut off my hair and 

shaved my head when my hair fell out and we cried together.  That creates 

strong links.  C’est l’amour.  And to top it all off, he is now dealing with his own 

grief over the loss of his elderly parents this year.  He has a lot on his plate right now.

My hospital. I’m so lucky to live just five tram stops away from the best cancer 

research hospitals in Europe, and one of the best in the world.  Not only is the 

science top-notch with the possibility of having the latest research results, but 

also it has the most human approach to caring for cancer patients and their families.  

Everyone, from the director right down the line to the cleaning lady (!) makes me 

feel that I am someone special who deserves particular attention.  The nurses 

know me by name, I have regular meetings with my psychologist, the cafeteria 

lady knows how I take my coffee.  Would you believe that they even organize 

tango lessons on Tuesday nights for patient’s “well-being”?

Socialism.  So much is contained in that one word that may be so misunderstood by 

those who don’t live and contribute to such a system. All these years that I have 

been working here in Europe, I’ve been paying into the system: for health care, for 

unemployment benefits, for additional private insurance.  Since I’ve been sick, I can 

now have the best treatment possible without ever having to worry about how I’m 

going to pay for it or even what it actually costs.  My job has been kept open with 

social security paying part of my salary and private insurance the difference.  

This will soon change, and I will retire with full benefits because of my “invalid” 

status.  Being sick alone brings on its own set of worries and anxiety, but I’m so 

thankful that I don’t have to worry about how to pay for it or to have to settle for a 

“cheaper” treatment.

The obvious and not so obvious.  Abundant water. No lack of healthy, varied food. 

Public transportation. Public recycling. A country house. A city house. Two gardens. 

Chickens. Bees. Quilting, sewing (especially little girl’s dresses), knitting. 

Access to books and cinema.  Strong coffee and dark chocolate.

I guess I could ramble on and on, but I think I’ll just leave it at that for the time being.  

Tests scheduled for the end of February.  I'm hoping that I'll have even more to be 

thankful for then.

Happy New Year to all!