9 DOWN – 7 TO GO
Hi Peeps,
SPRING AT LAST
A couple nights ago I went out in the front at 6:30 to walk Argo and I couldn’t contain myself any longer. I had to rake! Though I can do many other things, raking makes my chest ache somewhat. The place where my muscles attach to my sternum is weak so I can’t pull the rake across the grass so easily just now. I can’t ply the dirt underneath the way I used to, but who the heck cares. I know this might sound strange but I LOVE mindless, peaceful raking. I’m compelled to rake, so I did. It was like letting myself run wild in the woods, with the breeze blowing through my long streaming hair. (Oh right, forgot about the hair thing for a moment, but it’s MY daydream so what the fuck?) But, I lived to tell. I will rake again.
BRUSH WITH FAME
Ok, so in the last update I almost told you about how I wrote an email to The Tough Alliance. At the last second I thought it sounded dumb and I yanked it out of the update. BUT, guess what, the Tough Alliance didn’t think it was dumb, and they replied. Here’s the whole exchange:
Me …
“Hello to TTA,
I hope you don't mind but I wanted to let you know that I am a 41 year old American mom who loves your music. I also found out I have stage IIIA breast cancer last October. Since then I've had a double mastectomy and am now half way through a course of chemotherapy which will end in May to be followed by 6 weeks of radiation.
Here's the part I hope you won't mind about, I've found inspiration in your music, especially the song First Class Riot - where you say "Don't Die Yet". It seems like a simple instruction for how to carry on. So based on that, I've barrowed your band name for a short time to also be the name for my team of walkers who will walk in Oct 2008 60 miles to raise money for breast cancer research. We are doing this with the Susan G. Komen organized walk in Washington, DC. http://cms.komen.org/komen/NewsEvents/BreastCancer3-Day/index.htm I am a big runner and The Tough Alliance seems like the perfect name for our team of walkers. I am trying to run and walk through my chemo. Mostly I can but sometimes I can't, still it is helping me through this weird experience. I also plan to run a half marathon the following weekend in Baltimore. I ran the same race last year for the first time just days before I learned about my cancer. I know I didn't have to tell you about this but I just read your interview in Pitchfork and thought you might feel good about it given your attitude toward your art.
Besides being a 41 year old cancer patient, I'm also a landscape designer. I've just come to this career in the past couple years but it is a form of art I can really enjoy. Before this I was a website designer for 10 years and had come to a point that I just couldn't put up another web page. Not because the word doesn't need another web page, but because I needed a new medium. I agree with you that art cannot be contained in one medium. Anyway, here is my landscape design website. I hope you like it. www.dogwooddesign.net
And I hope you won’t mind that we are using your name for this walk. Good luck in the future and I hope to see you here if you ever come to visit the 9:30 club in DC or somewhere in Baltimore.
a”
Tough Alliance …
“Dear dear Adele.
Your letter was one of the most touching things that TTA has led to for me. And that's really why we do what we do, to reach out and hopefully touch and be touched. In a society that encourages separation and cold professionality those things seem extremely important.
I'm so inspired by hearing about your fight. It puts things in perspective as well. It's an absolute honour that you use our name. Really.
The funny things are that I run every day and that I've wanted to be a landscape designer since I was like seven or something. That's what I plan to do later.
Thanks from the bottom of my heart for sharing your world. Truly uplifting and inspiring.
Eric, TTA”
Pretty nice of him.
MILESTONES
This has been a good week. I’m able to exercise and that always me feel more like myself. At first it was cold so I went for the old reliable stairs instead of walking the trail. But the temps have been rising so I the past few days I’ve been outside much more. Why this make such a difference in my attitude toward life, I’m not sure. Adrenoline? And I saw the light at the end of the tunnel 3 times. That means I’ve walked/run 15 miles this week already and it’s only Wednesday.
As you probably know, our own Tough Alliance Team began fundraising for the Susan G. Komen 3-Day. I’m so delighted that there are quite a few women ready and willing to walk. We got together at Sonia’s house for a kick-off and watched a movie about other walkers, why they walk and raise money. It was difficult for me to see women talking about their loved ones who didn’t make it. Nearly everyone in the room was tearful. I knew they were all aware of how emotional I was, but at least there were no audible sobs and cries. I don’t ever want to think about people lost, but maybe it was that extra push to get myself signed up to raise that money, too. Isn’t it weird that I would need motivation to do something like this? You’d think I have the perfect motivation. Others seem to stride into this 60 miles test unimpeded. I’ve always been about saying “yes”, in the past year, more so than ever. Why was I saying, “no”. I had no good reason, so I changed my tune. And thanks to many of you I’ve already been able to make an impact. Because of you and others who have given to the team, we’ve raised $20K+ in one week. Our team has raised more money than any other team in the DC area at this point. It’s very exciting to see. Our goal is to raise $50K.
But here’s another wonderful thing. Our Tough Alliance Team is not only going to be a team that walks the 60 miles in Oct, I also want to invite you to walk 5K on June 7th with me and my family. Please bring your family to walk in the Race for the Cure on that day. It should be a lot of fun. I’ve walked it once before myself and if you have done it yourself you know it basically adds up to a mobile celebration. My sister, mother, and even Lily will be there walking with me. I heard through the grapevine that some of the other mommies from Lucy’s soccer team plan to walk with their kids, too. At that point I’ll be done with chemo and ready to make a happy memory. My sister will be spreading the info about it shortly.
The Tough Alliance will also of course continue for the Baltimore half marathon, as well. That will be the grand finale. I spoke to a few of you who promise to run with me – my sister hopes to, Sonia J, Dana M, Jim K, Tom K, Kyle and I don’t know who else, but come out of the woodwork and let me know.
HEALTH MATTERS
After switching to Taxol (as planned), I have less severe days but my brain has turned to mush, I’m sore all over and quite tired. Yes, still with the hot flashes and bloody noses. I’ve simultaneously been working on a bit of insomnia, too. My eyes pop open at 4:30 or 5am, and remain awake for an hour, or two, or more. But I’ve got a new plan of attack in the last couple days. I still have a stash of valium that has come in handy. I can’t help thinking this all would be much worse if I wasn’t so active. I want to be able to relate to you all how I feel, since I know you are curious, but there’s not a lot to say about it except the basic facts above. It’s a boring report. I guess I’m hanging in at mean 70% of the norm. Sometimes down to 50% sometimes up to 85%. The ebb and flow of my energy level is really unpredictable and mind boggling to me. I got a look at my blood analysis Tuesday at my infusion. Each week before I get an infusion they take blood and send it to the lab to see if I have enough red and white cells and whatever else is in there (whether I’m strong enough) to get chemo that day. The analysis showed my lab results from ALL of my infusions. Each week showed my blood broken down into about 10 different measurements – a breakdown of the elements of my blood, I guess - all written in some cryptic acronyms. I’m sure Dana would know what they meant, but I didn’t. There were no trends that I could see across any of these measurements across any of the weeks. Oddly enough, they all seemed to go up and down, up and down in different directions so I couldn’t really tell if the chemo was making me weaker over time, at least according to my blood. I did notice that my white blood cell count was up during the weeks I was taking antibiotics. Yes, this is still hard and is certainly wearing on me, but the end really is in sight. Just now I’m in good spirit but low energy. Just going out to visit my PT seems to have taken it out of me and instead of running off to do errands, I bailed and just went home to eat some trail mix and drink vast quantities of vitamin water. Is this interesting science for you?
BOOK CORNER
Since I had a lot of homework and finished another class in the last few weeks, I haven’t been reading as much as I had earlier. My big plan to keep you all occupied in this boring homestretch was to have written these terrific book reviews. I think that isn’t going to work out. Besides, I’ve fallen into my old pattern of reading Sci Fi, and I don’t know how many of you are really into that. I can say this, I did manage to listen to 3 other Bill Bryson books on CD: I’m a Stranger Myself, Notes From a Small Island and another I can’t even think of the title for. Notes From a Small Island was very good, but the other 2 were not up to his usual par. I think they came earlier. I’d stick to Thunderbolt Kid and A Walk in the Woods. Those were the best. Now I’m reading Dune, thanks to my friend Simon. It is wonderful and mysterious. I think it will be quite good reading at the beach in Florida next week. Can you believe I’ve never seen the movie? Don’t tell me the ending, please.
HOW WE ARE DOING
Ok, so it’s a little weird to give you an update on my dog but, he is a big part of our family. Argo has decided it's time to become a guide dog for me. When I first arrived home after my surgery from the hospital, he cried and cried and ever since then he hasn't left my side when I'm in the house. He follows me from room to room, standing when I stand, sitting when I sit and laying down at the foot of my chair if I'm there longer than a few minutes. He can't rest if I'm on the move and even though he's an energetic 11, that's still geriatric in dog years and I have a step or two on him, despite chemo. It’s hilarious when I start to do my steps for exercise. He has no idea what to do and starts to follow me up and down, poor guy. He gets so confused. I love him for keeping me such good company. He truly has become my beast of burden.
Speaking of, I can say the same for my better half. Poor guy, Kyle is also a beast of burden these days. He’s been so patient and calm throughout this entire episode in our humble marriage. I can’t understand how he does it. He takes such good care of me and our family. I know he’ll be embarrassed by my talking about him, but I can’t help myself. He has shouldered a lot with such grace and ease. On top of that, he keeps me laughing with his wry sense of humor. But for the first time in weeks, he got aggravated with me last night. He sometimes squeezes in a run in the evenings and just needs me to get those kiddos in bed while he’s gone, a simple thing really. I haven’t been able to do it as well as I should. I think this is a very good sign that he could let himself tell me to get with the program. Everyone needs to have a release. I love him so much. I want this to be over for him even more than for myself.
The other day, after taking the girls out for the entire afternoon, he returned home with a little gift for me. It is a crystal hanging from a tiny solar panel that you can stick to your window. When the sun hits the panel, the crystal spins. It’s a funny little contraption but it’s wonderful. He reminded me that he gave me a crystal (which I still have) a long time ago. It was one of the first gifts he ever gave me, when we were first dating. We hung up the new crystal at night in my office and went to bed. I’m sitting here now, writing this, it’s a sunny day and the room is utterly filled with little floating rainbows. It is extraordinarily beautiful. I feel transported to another time. Thank you handsome.
MUSIC YOU CAN USE
Kyle also continues to take me to concerts, another thing that makes me feel more normal. We got to see two fantastic concerts in the last couple weeks. I had to nap to stay up late enough. The first was for a band called the HIVES, and yes, they are quite buzzy and also from Sweden, go figure. The lead singer has many Mick Jaggar moves and is quite entertaining. Check them out.
The other band we saw is from Atlanta and is called the Black Lips. I met one of the members at the t-shirt table before the show and couldn’t resist the opportunity to ask him what high school he went to. His response – Dunwoody, an uppercrusty high school in my day, but who knows now. “My friend” as Kyle called him, had to be at least 15 years younger than me so it was hard to go further with that conversation. Anyway, he and his buddies took the stage and proceeded to play a mix of garage and swamp music. They were terrific. They have a great song about Hurricane Katrina. See if you like them. My friend is the one singing lead and with mustache, which is now quite a large handlebar mustache.
Ok, I leave you now, with another slight brush with greatness. Somehow in putting my contacts lit together for the Tough Alliance fundraising, I happened to add in the email address of a terrific artist that Kyle and I have bought some small pieces from. I didn’t’ even know I had done it, but it turns out she was the first to respond to my letter with a donation. Here name is Amy Ruppel. You can find out more about her art here. Here is a piece of her art.
