Friday, March 21, 2014
Rebecca's MRI was yesterday. I will quote the Meyers for the results:
:::The MRI showed a mass behind Rebeccaís left eye that wasnít there on the previous MRI. The doctors at CCF are communicating with the doctors at CHOP, who will determine what they can do.
We may be headed to Philadelphia this weekend, if they tell us they can remove the tumor. If they canít remove it, given the tumorís growth rate, Rebecca will likely live anywhere from a few more weeks to months, but nothing is impossible and studies are always being opened.
That is literally as much as we know right now. We are staying in a holding pattern until we get a decision from CHOP, and must ask you to do the same. Please donít call or text the house or our cell phones. Comments here are fine, but we really canít handle a flood of calls right now.
If we havenít contacted or donít contact you directly, please donít take it personally. There are a lot of things we have to deal with right now, Rebeccaís sorrow and fear primary among them. We havenít told her that she might die soon, because we donít know that ourselves, but we have told her the bad rocks are back and that she might have more surgery and radiation treatments.
To which she said: ďI hate that dumb olí rock and I want it to be gone!Ē And then curled up in our arms and wept.:::
I've been sitting here for five minutes, trying to figure out something to say that doesn't sound self-centered or self-indulgent. Right now I feel like I've been hollowed out and then smashed flat.
Monday, March 17, 2014
On Thursday our goddaughter Rebecca will have yet another MRI to determine whether the toxic chemicals being poured into her system are successfully keeping her brain cancer at bay.
Rebecca is 5 years old.
She was diagnosed in August. Ferrett and I were there in Philadelphia with her and her family while she underwent brain surgery to remove the tumor. We were there to see the x-rays and hear the discussion of the diagnosis and the treatment plan and the prognosis. We cared for and cuddled her siblings, and hugged her parents and did what we could to help care for them. We have been along for every MRI results meeting since they were able to return home permanently after proton radiation treatment. We have walked for cancer in Rebecca's honor, donated to and helped raise money for her sister having her head shaved for St. Baldrick's just yesterday.
I still can't quite believe that Rebecca has cancer. Because the Meyers aren't supposed to be a family that goes through this. They are wonderful and amazing and I consider it one of the greatest gifts that I am part of their lives. In my mind, this can't be happening because they are simply "not those people."
The thing is, "those people" is not a derogatory designation in my mind. My extended family? TOTALLY "those people." If one of my siblings or cousins was diagnosed with cancer, I would be saddened and shocked, but I would be able to accept it. It wouldn't feel so impossible. When Ferrett's stepdad contracted ALS, it was awful, and that he died so quickly from it was terrible and tragic. But while I felt like it was unfair and I was grief-stricken, I never went through this ongoing sense of, "but...this just can't be!"
I'm not quite sure why Rebecca's cancer feels so different from so many other illnesses and tragedies, but I do remember the one other person I felt this way about: my friend Annie, who died of inflammatory breast cancer when she was just 36, the mother of four small children. Annie and Grant were also a family was wonderful and amazing, and the notion that Annie, who worked so hard to feed her family fresh, organic food and lived such a green lifestyle, could have this genetic timebomb within her that mowed through all those good decisions? It just wasn't right! It's been at least 14 years since Annie died, and I still get moments when it pulls me up short.
Because the fact of the matter is, there is no magic that protects any of us. There is no magical good fortune that keeps illness and accident and tragedy at bay. We are, each of us, vulnerable.
I don't know how to end this. It's not a happy entry. I have no deep insight that leads to a positive outlook right now. Do I just fall back on platitudes: hug your loved ones; appreciate life's every moment? The truth is that this is a dark and scary place, and I'm not in a good headspace about it right now. I spent yesterday afternoon cheering on Carolyn and her friends as they got their heads shaved, getting snuggles from Rebecca, and visiting with friends as we all hang on together trying to feel like we are making a difference. And we are, overall. The money raised goes to research that will help kids in the future, just as the money raised a decade ago and more went to the research that has led to developments that are giving Rebecca a good chance of beating this.
But each of us, in the moment, is just clinging to each other against the cold, howling winds of chance. We stick together for comfort and support. And right now all I can think about is Thursday, when we will be there with Rebecca's parents to hear the verdict once again. I believe right now that it will be fine, that the MRI will be clear. But believing it and knowing it are two different things, and we won't know until then.
Saturday, March 15, 2014
My daughter and I completed a 5-mile event today. It was a race, but we weren't really racing anything, so I'll stay with event. Our time was 1:18:35, or just under 16 minutes per mile. Slow, but hey, five miles!
And then, because I said I had to, I went to the gym. I slowly pedaled for two miles and did a little core work. But I did it. 15 days in a row now.
I'm really tired. Like, considering going to bed. I feel obligated to stay awake until 7, but unless I rally it's gonna be an early, early evening.
Friday, March 14, 2014
Today, I walked through the door of the house and said, "Well, I'm back." The last line of The Lord of the Rings: Return of the King. It made me a little teary. You see, I started on the Walk to Rivendell back at the beginning of 2006, and after 7 years and 2 and a half months, I have completed every step of that journey. I walked the miles with the Fellowship to Rauros, then followed Frodo and Sam to Mount Doom and through their rescue by the eagles. I then "flew back" to Rauros and followed Aragorn, Gimli, and Legolas through the final battle. Then once again, flew back and followed Merry and Pippin until they got split after Helm's Deep, following first Merry and then Pippin. With the Fellowship reunited, I walked and rode the journey back to Hobbiton, and finally the journey to the Gray Havens and back. A total of 8,349 miles.
I've kept records throughout all those years. I've only counted the miles that were part of exercise, not just walking around for errands or work. The mileage tells the tale of where I've been emotionally and physically. In 2006 and 2007, I walked over 1,000 miles. But from 2008-2011 my mileage was minimal--shocking minimal. As little as 282 miles in 2008. Part of that was that in 2007 I was hit by a car on my bike. I wasn't badly injured, but I lost my nerve for riding. I went from riding over 500 miles to not riding a single mile in 2011.
But at the end of 2011 I took control of my life again. I joined Spark People in September and started working out. In 2012 I completed 2542 miles, and in 2013, 1684. Considering how crisis-filled 2013 was, I am not surprised that my mileage fell off considerably.
And now, I have reached the end of an adventure. The last of the Walk to Rivendell. I'm proud of that accomplishment.
So what's next? After a short celebration, tomorrow I will head out with Bilbo and the dwarves for the Lonely Mountain. Because there are always adventures to be had in Middle Earth.
Now please excuse me; I have to attend an Unexpected Party at the home of Mr. Bilbo Baggins!
(Anyone interested in the walk can find the website here: home.insightbb.com/~eowynchallenge/W
(Also, there is a Walk to Rivendell Spark team, too.)
Thursday, March 13, 2014
Yesterday's weather was abysmal. All the schools around us were closed because snow was ... not so much falling as being hurled vertically across the landscape like tiny ice bullets. The wind velocity combined with this punishing precipitation inspired me not so much to go to the gym as to climb back into bed, pull the covers over my head, and refuse to come out until April.
Plus, it was a swimming day. Which meant getting WET in a non-home location. It just sounded terrible.
So I promised myself that I could just go to the rec center, climb in the hot tub, and marinate for half an hour. After all, I only committed to going TO the gym every day. Not to working out every day.
Of course I was lying to myself. I knew that when I got there, I would at least get into the pool first and paddle a couple leisurely laps.
That was also a lie. I went, and I swam a mile freestyle, then an additional 5 laps of backstroke just to finish out the hour. Then I finally went and sat in the hot tub for a little while.
It's useful, at times of low motivation, to break things down into baby steps and to tell ourselves that we only have to do the first step. Right now my kitchen is a mess, and I'm telling myself that when I finish this entry I only have to put the dishes in the sink into the dishwasher and start it. Nothing else.
Sometimes we really do just complete that one baby step. There may well be a day when I go to the gym and just get in the hot tub because I really need a day off. But most of the time, it's just a little lie, coaxing us on to the next part of what feels like an overwhelming task. Just one mile on the bike, just one time around the track, just one load of laundry, just one errand.
And with a little luck, we will finish the day feeling quite smug about all the things we lied ourselves into accomplishing.
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