Wonderful while it lasted

We suspected in January that the tides might be turning when my CA125 marker, which had been steadily plummeting for the last three years, increased slightly (from 65 to over 100).  Dr. D, repeating her mantra of “We aren’t treating markers”, scheduled me for a PET scan, the results of which we obtained in February.  Indeed, the scan detected a “hot spot” next to my spinal column near the ninth vertebra. The report from the PET scan remained cautious concluding “lymph node? metastases?” This called for an MRI to hone in on the area. Another month of waiting for results ensued while I continued with my chemotherapy sessions.

When we entered her office for my March check-up both Mr. T and I read on her face that something was up.  The MRI report came back with a description of a “lesion”, an area of 2 cm. x 8 mm, probably a lymph node, located between my vertebra and the pleura (the sack which surrounds the lungs).  After having consulted with her fellow oncologists she decided to change tactics.  Since the area in question was quite contained, we would drop the systemic chemotherapy approach and try radiotherapy. 

While listening to this turn of events and reeling under the realization that we were heading for unknown waters, I said ‘I feel like crying’ and Dr. D told me to go ahead and cry.  And I did.  I cried for the loss of three years of living in grace, three years of treatment with a molecule that had practically no side effects on me, three years of a molecule that was highly effective providing me with positive reports after each control, three years of going in to the hospital only once a month which made it so easy for us to plan other activities.  I cried for the loss of that sense of security that I had enjoyed, for the illusion of being cancer-free, for the respite from the anxiety of ‘what’s next’.  I hold the record in the hospital for having had thirty-eight consecutive treatments of Caelyx, but I’m no longer competing in that event since I went home that day without having had my treatment.  I felt uneasy and vulnerable.

We will meet with the radiologist next Friday, March 11 to learn what this technique entails.  Waiting and not knowing are the sometimes the hardest part of this experience.

Once home, images from the past surfaced to the forefront of my memory triggered by the word “radiotherapy”.  I remembered when I was fourteen having recently moved to Houston with my parents when they called me into the living room to talk to me.  Seeing them seated on the couch together ready to make some sort of announcement was an indication that something bad was in the offing.  The last time I had endured one of these concerted announcements was several years earlier when they told me that we were leaving my beloved Louisiana and moving to Houston, that hugely sterile and stiffling hot city.  As Randy Newman so aptly stated, ‘That was the end of my baby days’. 

This time the news was worse:  my dad had been diagnosed with lung cancer that was inoperable and had already started his radiation therapy.  I demanded to see what, in my mind, “they had done to my daddy”.  He opened his shirt and I saw the big square burned patch in the center of his chest.  I was speechless, struck by how his physical integrity had been violated and how vulnerable he looked.  He seemed so sad to be telling me this and I don’t know if he was sad for me or for himself or for us both.

Soon after that he was hospitalized and that period remains a haze of routine visits to his room, where my mother had taken up residence in the other bed, and the coming and going of various relatives at our house to “take care of me”.  At fourteen, I was not emotionally equipped to handle these circumstances and wildly wavered between being concerned about school mates and gossip, what clothes to wear, listening to my Beatle albums and then being awash with fear and anxiety and feelings of helplessness over what was happening to my dad.

I have one clear memory of being alone in the room with him and being afraid to hold his hand since it was so swollen and not like my daddy’s hand at all.  I took it anyway and was crying softly next to him.  I thought he was asleep but he turned to me and told me not to cry.  How sweet to try and comfort me but how could I not cry?  My dad was dying and this was so unfair.  I was confronted with the obvious: what I was convinced only happened to others was now happening to me.  I very selfishly thought of me losing him and not that he was losing his own life. Diagnosed in July he died on December 3, 1966.  He was fifty-two years old.  I had just lost my favorite parent and my life would never be quite the same again.

These memories feed my irrational fears but my rational self knows that radiotherapy has vastly changed since the 60’s and that I’m not condemned to the same fate as my dad.  However, I do know that every time I see my son light up a cigarette those fears are rekindled.  I project myself at fourteen onto Jasmine and hope that she will never have to endure what I went through.  I feel that burst of sadness and loss that belongs only to me, coupled with the love that I have for my son and his family, and then I have to let it go and enjoy the moment even if it is Alec teasing me by saying “Don’t tell me what to do”.

Looking back over my three years of grace makes me realize how lucky I am to have my wonderful family.  Mr. T and I have seen all four of our kids settle into their “forever homes” as they say in animal shelter-speak.  We’ve seen our grandkids hurdle through their birthdays -- Émilie, from twelve to fifteen; Charlotte, from seven to ten; Lola, from four to seven; Élodie, from two to five, and Alma, Jasmine and Thibaut, from zero to three years old.  That makes for a lot of vacation time, many cooking sessions, improvised sculpture or patchwork workshops, many board games, many hours piled on the couch together watching “big DVDs”, and many bedtime stories.  Although my life is full of those activities that I personally enjoy, these kids are the spice in my life. They make me feel that I have still have a contribution to make and an important role to play. When we take the kids, not only do we simply enjoy having them with us we also feel that we’re helping out their parents by giving them a little break in their routine and some well-deserved time alone as a couple. 

It’s hard to describe the satisfaction that I get from seeing these kids grow up and feeling that we had a small part in making them who they are.  The other day Émilie showed me a crochet project that she was working on, and then the next time I saw her she had moved on to knitting an afghan for her mom to snuggle under while watching TV.  She’s knitting simple squares of blue and lavender, assembling them as she goes. I appreciated her choice of colors and technique.  I looked closer and noticed that she was knitting with her ‘kiddie’ needles, with the little kitten faces on the ends, that I had given her years ago when I first started teaching her to knit and crochet.  “Émilie, you’re still using those little needles?” I asked.  “Yes, they’re my favorites”, she replied with a sly smile.  What a return on investment!  She now has a skill that belongs to her and that she enjoys, something that we share.

These kids are one of my many reasons to live.  It seems that the love I have for them is the purest most unconditional love that I’ve ever experienced.  It is so much easier to be a grandparent than it was to be a parent.  I don’t feel so caught up in the everyday hassle of trying to hold down a job, run a household and take care of kids.  I can concentrate just on being with them while having the liberty of letting all else slide.   

I have shared many precious moments with them which make for unforgettable memories:  Charlotte’s quick smile when I invite her to visit the cave paintings in Lascaux for Easter,  Alma quietly sidling up to snuggle next to me while I read stories to Lola, Jasmine’s pudgy little arms around my neck while planting wet kisses on my face and saying “Mamie Lee, je t’aime so much”.

It’s all I need to keep on keeping on.