Tomorrow marks exactly two years that I have been dealing with this stupid, stupid cancer. It has been quite a ride hasn't it? So, I'm going to share a few of things that have stuck out to me about this journey.
People (including myself) have lot of different reactions to my story. This first one is usually disbelief - "but you look so healthy!" Right after diagnosis, I spent a lot of time thinking "this can't be happening" or "I don't feel like I have cancer." Often, I still don't feel like I have cancer - and always wish I didn't have it.
Then comes the fear - I see this in myself of course, and the people who sympathize with me saying "you must be so scared." But I also see it in the people who insist "you're going to be fine!" My doctor's can't say this, and I know it isn't true. So, the real reason you are telling me that I'll be fine is to make the cancer less scary somehow. I've come to realization that it is ok to be scared - cancer is terrifying. I just can't let the fear control me.
There's anger and sadness, too, of course. I'm not sure why it has stuck with me, but right when she found out I had lung mets, one of the nurses I see on a regular basis said, "It makes me so angry that you have to deal with this." And she meant it. I still think that was one of the kindest things someone has said to me when I had bad news to share. It's ok to be angry and sad, too.
It hasn't all been negative. At one of my very low points, while I was waiting for radiation to star, I went to church and sat in one of the back pews. I managed to make it through the service without crying, but it was close, and I really just wanted to leave quickly through the back door. Maybe I could make it to my car before the tears came. But, the minute the service was over, the elderly gentleman in front of me turned and asked, "How was your week, dear?"
At that point I didn't even have the strength to lie to this nice old man. "Lousy."
I think he saw the tears in my eyes, or the pain in my face, because he took one of my hands in both of his, and patted it gently. Looking me in the eyes, he said "Life will get good again."
He had no idea what was going on with me, but he had exactly the right words. "Life will get good again." At that moment, there was nothing I needed to hear more. I still don't know which of the little, white-haired men at my church held my hand that day. It doesn't matter; that day he was an angel.
And so, two years now, I have been dealing with this. I sit here, knowing that the scan I had yesterday might bring good or bad news. (I should hear on Monday.) I am all of these things: unwilling to believe this is happening to me, angry, sad, scared. And I am just tired of thinking about cancer. But I know, too, that life IS good. I have family and friends that I love, a good job, and there is a rabbit sunning himself outside my back window. I can enjoy things big and small, and I will, because, even though I know the future probably holds unpleasant things, life is good again.
Saturday, August 4, 2012
AttackACC walk
Friends,
You probably already know that the past two years were
pretty rough for me, and I am so grateful to all of you who offered words of
encouragement, or asked if there was some way to help me through treatments.
All too often, I turned down offers of help, because I had everything I needed
and plenty of helpers. But, lucky for you, I have a new, easy way for you to
help. This September, I plan to walk in
the “Attack ACC” fun walk near Chicago, IL. The funds raised go to the University
of Virginia Comprehensive Cancer Center, one of the few centers in the US
studying Adenoid Cystic Carcinoma - they even have a current clinical trial. (See attackacc.org for more info on the walk
and accrf.org for more info on ACC. )
My story starts many years ago. In
high school, I had some pain near my jaw, but I didn’t think too much of it.
Over the years, I asked several doctors and dentists about it, but no one
seemed worried, diagnosing “TMJ” or an even more generic “probably nothing to
be concerned about.” Being an invincible teen and young adult, I assumed
nothing bad could ever happen to me. But, the pain and lump just in front of my
ear grew. Looking back at some pictures now, I see the lump and think, “How
could my doctors or I have thought that was nothing to be concerned about?”
When I finally asked a new doctor about it in June of 2010, she quickly sent me
to an ENT (Ear, Nose, & Throat specialist).
A flurry of tests and doctor’s appointments later, I was going under the
knife to remove the tumor on my parotid (large saliva gland). The surgery went smoothly, but brought bad
news; the tumor was a kind of cancer called “Adenoid Cystic Carcinoma.” I survived six LONG weeks of radiation to tumor
area. I did not enjoy radiation, but if
you need a weight loss plan, it works great!
(Just kidding, of course!)
Being a scientist by nature, I started researching. What I found did not encourage me. Adenoid Cystic Carcinoma is a rare cancer,
with about 1000 new diagnoses every year, so not much money goes to
research. The larger cancer
organizations, like the American Cancer Society, don’t give any money to
Adenoid Cystic Carcinoma research. No
one knows what causes it, why it grows very slowly in some people but is progressive
in others, or a good way to treat it if it reoccurs or metastasizes.
This last point is especially close to my heart,
both literally and figuratively. My
regular scans show that the cancer has spread to my lungs. I participated in a radiation-based clinical
trial that was not terribly successful at slowing the appearance of new little
cancer spots. The good news is that they aren’t affecting me physically, yet. For now, all of my doctors advise that I live
my life to the fullest until I start having symptoms, and then to try more
treatments or clinical trials, so that is what I am doing. There are precious few clinical trials out
there, but more research is being done every day, and I try to remain cautiously
hopeful.
My research also led me to several websites where I
found hundreds of us out there with Adenoid Cystic Carcinoma – and more than a
few who have been willing to encourage me as I go along on my path. So, if you have an extra couple bucks, I’ll
make sure they go to a good cause with the AttackACC[1]. The research you fund could help me and my
new friends fight this lousy disease.
Thanks
for considering it!
Lisa Moore
[1] All donations are tax deductible. If you’d like to donate directly, you can donate on www.attackacc.org
(you can “pledge”
for my walk on the website by clicking on the “donation/pledge” tab and
selecting “Pledge Adenoid Cystic Carcinoma Survivor”).