Today (Tuesday) was Sandy’s second brain MRI since the surgery at Stanford (she will get them every two months from now on, the last one was in early January). We won’t know the results of today’s MRI until Friday. A CD of the MRI is also being sent to her doctors at Stanford for evaluation.
And though it’s certainly not as romantic as getting the spa treatment on Valentine’s Day, at least we’re together for it… We have had a tradition for all of Sandy’s MRI’s - she has had over 20 since 1999 - that I am with her during the MRI, holding her hand or rubbing her feet. This helps her through the noise and claustrophobic nature of the MRI experience.
If you are not familiar with MRI’s, this is what the machine looks like (click image to make it larger):
The picture looks so high-tech and almost peaceful, belying the incredilbly loud noise the machine makes - sort of like a grinding, pounding jackhammer - so loud you have to wear earplugs, which barely lessens the sound. For Sandy, and I her faithful hand-holder, this goes on for about 40 minutes. Though halfway through she gets a break - they slide her out partway and inject a chemical into a vein in her arm which helps highlight and contrast any changes in the tumor area - and then slide her back in for more of the loud MRI scans.
Like I said, not exactly a spa treatment, but we’re thankful such technology even exists. And besides, it makes for a truly unique romantic experience you just can’t get anywhere else. Holding hands has never meant so much.
So we wait… and pray… for Friday.
And what a Valentine’s Day it has been. Sandy surprised me today with a trip to a local spa for both of us — we both had massages and facials. It was incredibly relaxing and just what we needed after the past week. It was my first massage ever and of course my first facial (Sandy’s first facial too), so all you guys out there who think facials are just for women, take it from me — they feel really good - just try it. Because women know how to live - we can learn from them, believe me. And now I truly understand why Sandy loves getting massages too.
Luckily Sandy’s chemo symptoms started to lessen yesterday and she felt good enough to go to the spa today — which she had reserved a month ago, not knowing she would be feeling so bad during the next chemo round. So after the 3-hour spa treatment, we drove the 25 miles to one of our favorite restaurants for a wonderful meal, the first real food Sandy has had in days.
So today has been pure joy for me… to see Sandy feeling good and relaxed, looking beautiful… and eating dessert!
Happy Valentine’s Day…
It has been a very rough week for Sandy. She finished the 4th round of the chemo drug Temodar last Thursday night. We had been told by doctors that with each successive round the symptoms of the drug may escalate. And they did. She has been very nauseous and has severe stomach / intestinal problems which began on day two of taking the pills. Today (Sunday) she seemed to feel a bit better, until she ate anything, and then she felt worse. Maybe it’s a good sign that the drug is working at stopping the growth of the tumor. But I feel so helpless to see her suffer for so many days. She missed a few days of teaching and feels bad about that. Hopefully she will start feeling better tomorrow. There’s a definite lag time with this drug - the low point comes days after she finished it. She says her insides feel “ravaged and burned.” But like she says, it could be a lot worse. Other chemo drugs have far worse side effects, so she feels lucky. “Lucky”… not a word you think you would hear from someone with a brain tumor and taking chemotherapy. But that’s how she is… her spirit keeps shining through somehow. But the past few days has really hammered her.
And it’s her spirit that keeps me going. She is tougher than she thinks, even on these days of feeling weak, sick and vulnerable. She can still crack a joke, get pragmatic and kick me in the butt when I’m feeling especially down, like this morning, when I let the numbers overwhelm me. Through research and in emails from people across the country dealing with this, it appears that the average life expectancy for someone with a Grade 4 GBM (glioblastoma multiforme) brain tumor is… one year. And that’s factoring in all treatments including surgery and chemotherapy. One year. We have known this all along but the more we see it in print and hear personal stories that validate the statistics, the harder it is to not be paralyzed by fear. Knowledge is power, but the knowledge of the numbers is also profoundly frightening.
I recently finished a great book by a man who had a “fatal” brain
tumor, was told he had months to live, and is still alive 15 years
later. The book is called “Making Miracles Happen. One of the passages in the book is something I always try to keep in mind, and close to my heart. He talks about those statistics and averages, and the fact that they are just that - averages. He had another type of brain tumor, not a GBM, but his rationale applies: Some people with a GBM 4 live less than a month. Others live years. So I try to forget the numbers and averages.
Though the edges of these days are tinged with fear and I can’t breathe when I think of losing Sandy, these days also hold gifts. It’s as if every day, every moment with her, every simple day-to-day routine thing we share… is lit from within and glows with a subtle powerful unspoken knowing… that this is it, this moment is all we’ve really got. Right now is what matters. But Sandy and I have also known that all along as well… ever since we first got together 17 years ago. Cancer didn’t teach us that, but it certainly keeps it illuminated. Life is still overwhelmingly beautiful.
Sandy is basically feeling good these days… though we’re both recovering a bit from a late night dancing to a great blues band (the Rose City Kings). We had a lot of fun cutting loose with some good friends. Her fourth round of chemo pills starts tonight. It was supposed to start yesterday, but she asked her onclogist if she could put it off for one day so we could party a bit. The doctor said one day wouldn’t matter so… blues before chemo!
The last round of chemo made her a bit more fatigued and nauseous than previous rounds, and it tends to hit her in the few days following the five days of pills. So she isn’t looking forward to the next ten days or so.
Last week was very tough for her. A coworker (and mother of some children she has taught) died after a battle with cancer. Sandy attended the memorial service on Wednesday and it was an intensely emotional experience for her. Friday we went to her onclogist for the monthly checkup. Her blood tests so far have been good — white blood cell count dropped a little but still well within safe limits, and liver / kidney functions looked good from the blood tests also. So that’s good news. We scheduled her next MRI for February 28. After that we met with a lawyer to update our wills and health directives, since we hadn’t done that for about eight years - prior to her diagnosis. We sure know how to pack in a day of fun, eh?
On January 24, Sandy celebrated her 3-month anniversary since the surgery. Seems like a lifetime ago and just like yesterday at the same time. She also recently talked with her “Brain Tumor Buddy” - her roommate at Stanford hospital - who lives in the San Francisco area. She’s doing well also.
Our thanks to PVD, Eric, Robin and Chris for joining our LiveStrong Ride team. And thanks to Patty, Heather, Glenna and Paul for making donations. We’re expecting more friends to join the team and we’re hoping other friends and family will help us by donating to the team. Each of us riding in September must raise $500 each to participate. All donations go toward the Lance Armstrong Foundation funding of cancer research and empowering those affected by cancer. Check out the link at the left to see our team member’s webpages.
So here’s to the blues… and never stop dancing.