Mr. T and I suspected that something might be
amiss when my oncologist announced in January that one of my markers (CA-125)
had gone back up. This was particularly unexpected since I had had two completely
clean controls (that's 6 months worth). She scheduled me for a PET scan in
March followed by an appointment with her a week later to discuss the results.
Almost as soon as I got home, I reserved flights for me to go to Austin for two
weeks, leaving the day after that next appointment with her.
So from January to March, we tried to keep an
even keel, even though there was constantly a hint of anxiety in the air.
We did indulge in some discussions of interpreting and analyzing the
results of our last appointment. "If things were really bad would
she wait two months to do a PET scan?" "She didn't seem particularly
worried to me." etc., etc. This
“analytical” exercise was interspersed with our regular routine including
tap-dance classes (for me, at least) and a great Easter-time ski vacation with
Barbara, Michel, Émilie and Charlotte. I
was feeling great physically, I had started attending Pilates classes regularly
and my hair had grown back out (I had even had it cut once). Things were “back to normal” by all external
appearances.
I had my PET scan at the appointed time and the
next week, Mr. T and I met with Dr. D. She confirmed that the cancer is
active again in most of the sites in the thorax that were there previously, and
in addition, a small tumor (5 cm.) has appeared at the site of the first biopsy.
I felt like the rug had been pulled out from under me and covered my face
and wept. She explained that there is a new drug, Yondelis (whose active
ingredient is derived from a sea squirt!)[1],
that didn't even exist a year ago that is especially for ovarian cancer
patients who relapse within a few months after a platine-based treatment --
exactly my case. We discussed the possible side effects and started to
set up the appointments for the first treatment. I told her that I've
planned to leave for Austin the next day for two weeks but will cancel if
necessary. She told me that I can go and start the treatment upon my
return.
I called
Madelaine and let her know my situation giving her and Richard about 24 hours
to digest the information before she picks me up at the airport on Saturday
evening. She questioned whether or not
it was a good idea for me to come and I let her know that of all places on
earth that I’d rather be right now it’s there with her and her family. This is confirmed the next morning when I see
Élodie for the first time in two months.
How she has grown already!
Walking about holding on to tables, couches and chairs; dancing to her
morning music; rocking her meerkat in her new rocking chair; creating havoc
with her alligator walker – it’s just heaven.
She’s thrilled that Mamie Lee has taken up residence again in the “Tent
Mahal” in the backyard.
My cousin,
Chuck, finds time to drive me to Garland where I spend the day with our Aunt
Sue, who’s not getting any younger. It
was wonderful to be together since the opportunities for us to see each other
are so infrequent. We did a bit of
shopping, had lunch at her favorite Mexican restaurant – ah, chicken enchiladas
and guacamole salad! That evening the
three of us went out to eat together, an all-time first. The next day Chuck reluctantly put me on the
bus to return to Austin. I’m not sure
what he thought was going to happen to me, but it’s always good to keep him a
bit off-guard.
Two of my
best girlfriends, Patti and Bebe, came over from Jackson, MS to spend a week in
Austin. It was just fantastic that we
are all on vacation together. Time to
spend with Madelaine and her art projects, time with Élodie, time for shopping
and eating out, and lots and lots of time for chatting together. Precious time.
Then there
was Élodie’s birthday party that had been postponed for my arrival. The Jackson Ladies and I made mini-cupcakes
and her birthday cake (peanut butter with cream cheese and orange zest icing,
decorated with edible flowers). Richard
and I did the party shopping and it seems that everyone who knows and loves
Élodie came to celebrate. Cathey, who
couldn’t be there, participated by offering her the cutest pair of butterfly
wings. Balloons, kids, presents, a big candle on her cake – we initiated the
first of many, many such celebrations for her.
Spending
time with my friends and family was the best thing that I could do to recharge
my batteries with positive energy. It
made me realize how much I have to live for and how important it is for me to
plunge into my treatment with as much determination and motivation as I can
muster. The night before I left while
baby-sitting for Élodie, I took her for a long walk in her stroller around the
neighborhood. Tears were streaming down
my face as I realized how desperately I want to be around to see her story
unfold, and not just her story. There’s
also Émilie, Charlotte, Lola, little Alma-on-the-way, and hopefully, a little
someone from Alec and Virginie since they also have a baby project. It’s easier to see how the grandchildren
“need” their grandmother. It’s a bit
more abstract to see how my own grown children and “beaux-enfants” (Chloé, Barbara,
Virginie, Richard, Philippe, Michel) “need” me, but I assume that they do, too. The beauty of aging is that we never stop
having something new to offer, more experience, a different point of view, a
bit of distance from the chaos of the daily routine, and hopefully, the wisdom
to listen and empathize, and the living proof that we, too, have been “there”
as a young adult/parent and survived to tell about it.
Returning
to Brussels was both a relief since I was back with Mr. T -- my absence had not
been easy for him since he was by himself with the waiting – and a burden since
I no longer had so many distractions to take my mind off of the relapse. I was totally taken aback by the amount of
anger and fear that welled up. I found
myself raging against my former gynecologist – why had she not discovered this
in time? Why hadn’t she suggest that I
have my ovaries removed preventively years ago?
I shouldn’t even be having this disease!
And that cold, hard knot of fear that this time I’m really going to
die. The damn stuff has started growing
again and even though the oncologist tells me there’s an effective treatment,
it won’t be long before they send me home with hospice care. Raging against the
past. Raging against the future. Raging against reality. Mourning over the end of my remission.
Mr. T
wisely advises me to focus on what lies ahead and to not spend any of my energy worrying
about what I can’t control. I guess all
of those gray hairs around his muzzle are useful after all. I should listen to him more often.
We don’t
really feel relieved until we show up to Bordet for the first treatment. We meet with Dr. D. and since this time I’m
not bowled over with emotion I’m able to go through my list of questions and
carefully listen to her answers. We’re
headed for three sessions of chemotherapy at three-week intervals and then a
PET scan to determine how the cancer reacts to the sea squirt extract.
At last, the
nurse starts the drip and the waiting is over.
At last we are in action mode. At
last there is something that can face up to those cancer cells, stop their DNA
in its tracks, rein in the uncontrolled cell division. After only three hours, as opposed to six for
the previous treatment, we go home and I remain alert for any side
effects. Nothing, even after several
days. No nausea, no vomiting, no loss of
appetite, no sign of fatigue. I begin to
think that they’ve given me a placebo.
Could I be so lucky that this will continue, and even luckier in that I
won’t lose my hair this time? It seems
so vain to be concerned about hair loss when what really matters is an
effective anti-cancer agent, and yet, it is important for my own
self-image. I want to see ME when I look
in the mirror so that I can maintain a certain level of normality despite my
treatments.
So after
having struggled with accepting the news of my relapse, I came to realize that,
in fact, I had set myself up for deception.
I had convinced myself that I was “cancer-free”, when that may never be
the case. The pattern of my life from
here on out will be treatment, remission, controls, relapse, treatment,
etc. The longer I live, the more chances
I’ll have of being around when someone finally finds the treatment that can
actually lead to a cure and not just another remission.
One thing
that this experience really brings into focus for me is just how precious life
really is. Everyday that we wake up is a
gift and each of us should take full advantage of it, even if we have the most
mundane tasks to carry out. Normally,
most of us just don’t “get it”. I always
thought that I would live to a ripe old age, carrying on as a little old lady
with my garden and cats and quilts, in a lot of ways just taking that scenario
for granted. We never know when our
number is up – probably driving to the grocery store is statistically more
lethal than having ovarian cancer. But
having cancer really puts your nose in it, makes you sit up and think, makes
you take a look around and drink in all of the wonders about you. It gave me the courage to tell those around
me that I love them.
When folks
hear about the cancer, I often here something to the effect of “you really have
to fight this”, “your attitude means so much”, etc. What does that really mean “fight this”? I’ve thought about that a lot. I just have to keep stepping up and doing the
next best thing and doing what’s right for me.
Accepting my chemotherapy, eating healthy foods, getting regular
exercise, having acupuncture, keeping active intellectually, and not forgetting
to laugh as often as possible. And as
Alec reminded me, “Mom, if it does come up, don’t go towards the light any time
soon.”
[1] During the
1950s and 1960s, the National Cancer Institute carried
out a wide ranging program of screening plant and marine organism material. As
part of that program extract from the sea squirt Ecteinascidia
turbinata was found to have anticancer activity in 1969.
