Dear Friends and Family,
Believe me, I’m completely aware of all the concern and all the prayers you’ve offered on my behalf in preparation for Tuesday’s MRI test. This is what, my fourth? — no fifth! –MRI. Used to be, the test itself stressed me out. The noise, the cramped space, the discomfort. Even the thought of climbing inside that coffin gave me the creeps. Now, I hardly think about it. I can take it in stride. Spending forty five minutes in the bowels of a grinding, shaking torture chamber means nothing to me. These days, the test is a snap; it’s waiting for the results that gives me the willies.
Paul told me he spent the whole time I was in the MRI machine petitioning for heavenly help. As he was holding my feet he was saying prayers to John Paul II. According to my husband’s line of reasoning, John Paul still needs to come up with one more miracle before he can be canonized. A remission from a glioblastoma would be a super-miracle! Old Captain Catholic was praying for a win/win — sainthood for John Paul and a cancer-free brain for me. I’m not sure I know what to pray for anymore. Maybe all I can hope for is the strength to keep going, the strength to keep up the good fight.
After the test, we walked across the pedestrian bridge from Brigham & Women’s to Dana Farber. Then I went for my blood draw and we took the elevator up to Yawkey 8, where my oncologist, Dr. Eudocia Lee, has her office. We hardly had time to settle into the waiting room before we were called into the consultation room. Usually we wait, and wait, and wait. Was Dr. Lee’s promptness some sort of portent? Paul was sitting next to me when she, and our wonderful Nurse Practitioner, Jennifer Rifenburg, walked into the room. I could tell he was nervous. He didn’t have a word to say, but he kept clasping and unclasping my hand in his.
Jenn and Dr. Lee didn’t look as if they were ready to deliver good news, and they didn’t.
“There was some growth,” Dr. Lee said, “and it appears that there’s some tumor development in a new spot on the brain.”
“Just give us a minute,” Paul interrupted, “and let us have some time to take it all in.”
Well, they were good enough to ‘break it to us gently”, but they eventually came around to admitting that the Avastin didn’t slow the growth as much as they’d hoped.
“Just the same,” Jenn said, “we still have a LOT of tools in the tool box,”
Paul asked one question after another, but I focused on the thought that the doctors weren’t giving up on me. I looked at the picture of my brain, and saw the spots where the cancer had built itself some new settlements. It dawned on me, right then, why they call it an MRI. It stands for “More Rotten Information.” It turns out there’s an entire family of tumors moved into to the spot where Dr. Johnson cleared the cancer out during my last surgery. What’s it going to take for these tumors to figure out they’re not welcome?
Don’t worry, I’m not going to go down the rabbit hole. We have options and I’m very grateful for that. Right now I’m waiting for a spot to open up on a clinical trial. We’re also negotiating with my insurance company to pay for what my oncologist, Dr. Lee, describes as an ‘off label therapy’. There’s also a medicine they can give me to enhance the way the Avastin works. The idea is to make things as toxic as possible for the little tumor devils. (Hmmmm… I wonder if I’d be eligible for an EPA Superfund grant.)
People ask us how we’re doing with this ‘rotten information’. Well, we’re not surprised, not really; but even if you prepare your head for bad news, you can’t prepare your heart. We’re hopeful, but at the same time we’re devastated and dejected. You can’t help but hope for good news while you’re waiting for a medical result; but even when you have beloved popes on your side there’s no guarantee on anything.
People say, “How can you stay strong?” Truth is, I’m not strong. I’m crying all the time. I know that, eventually, the cancer will get me and I’m going to have to say goodbye to my family and to everyone I love. Maybe not soon. I pray that it doesn’t happen soon, but it will happen eventually and I don’t have a lot to say about when.
People say, “How do you stay positive?” Positive?? Am I positive? Well, I’m positive of this much: Cancer Sucks! I’m also positive that, without the constant support of all of you, I wouldn’t be able to bear any of this. I’m also positive that God has a plan for me, God is going to be with me for the entirety of this adventure. I just can’t imagine what He has in mind.
There’s one more ‘positive’ I’m positive about — I’m positive that, on one wonderful day, (I’m talking about That Sunday, That Summer in 1989.) God led Paul to me. Our dear friend Joan deserves credit for introducing us; but whether she knew it or not, she got a lot of divine help that afternoon. God had His eye on me then. I have to think He has His eye on me now.
My life is still very good, very full. I’m actually not sick. I still enjoy things, I still can get excited, and for that I’m very grateful. I’m grateful for a fellow parishioner, Kathy Head, who’d heard how much our family loves the beach and gave us the use of her summer home on the Gloucester seashore for a week. Kathy and I worked together on a parish commission a while back; our relationship isn’t any deeper than that — but her generosity sure is! It was nice to be normal for a while, for the three of us to just be ‘a family on vacation’ as we have been so many times over the past twenty three years.
Let me say this once again: I’m not giving up. Words can’t express how grateful I am for my treatment team, how grateful I am to live in Boston where we have access to the best health care in the world. When it feels the bleakest, my team is always there to support me.
What’s more, I’m happy it’s summer. We wait all year for it and I intend to enjoy every minute. I’m not giving another thought to cancer when I can think about sitting in the warm evening sunshine, on the back deck with Paul, drinking our Gins and Tonic. Who could ask for anything more?
Peace and God Bless,