Thursday, August 30, 2007

A Special Shout Out: To My Duck!

Hello, Baby!

Mama misses you and thinks of you every single day. I am waving toward to ocean and am picturing you playing in the surf with your cousins. (Hi, Lily and Rowan!) Jason, did Nathan have a great birthday? I love you, baby. I'm going to see you soon and give you lots and lots of kisses.

Good night, sleep tight. Don't let the bed bugs bite!

See you soon, Stinky Pea!



Sunday, August 26, 2007

Happy Birthday to Me!

I didn't think I'd see 40. Seeing 40 from a Harley in Scotland is beyond compare.

I've gotten some good wishes from the other chickies here and decided that I would love some more. OK, lots more. Please post heartfelt birthday wishes below. Be sure to include the part about how inspiring I am.

And it case it isn't coming across in my desparate 15-minute typing increments, please know how much you have all inspired me. I couldn't have made this trip without you all.


Saturday, August 25, 2007

Today's Laundry List, Plus One for Pop

We had to be ready to go at 7:00 a.m. this morning. It is now 10:50 p.m. and I have no idea where the time went!

Today we road from Killen to Aviemore, with a stop to lead a HOG rally along the way. It was Amazon Heart that lead the way. The Scotish Highlands are beautiful. They do remind me of the Lake George area of New York. Lots of piney things, but with gorgeous heather tucked in here and there for prettiness. If they have a lot of something in Scotland, it's sheep. That's not a joke. So I found myself singing Bah Bah Black Sheep to myself much of the time. However, you should know that this is not a PC thing to do. You may only say "fleecy sheep" now.

Oh, I also learned the way to say "F Off" with a simple hand gesture. This was purely by accident, as when we would ride past other bikers, I'd toss off one of my American-style peace-out signs down to the right. Apparently, this can be misconstrued as F-off because a backward peace sign means just that. Yay me and my international relations skills.

Also attended the Scottish HOG rally evening festivities. FANTASTIC! I heard these amazing Scottish bands that rocked Highland style. Awesome stuff. I wore my Harley shirt with sleeves and made lots of new friends. Can't get them here. Between sets, they played good old American rock. Including Bon Jovi! Woah-oh, we're half way there! Woah-oh, livin' on a prayer! Fun to watch the Scottish rock out Jersey-style.

And, just for Pop: I ate haggis. And it was good.

Thursday, August 23, 2007

Amazon Heart Thunder UK 2007 Blog

Come meet all the awesome women on my ride and see what we're up to here. Megan is doing a much better job of keeping up the blogging than I.

Practice Ride No. 1: Step One -- Dump Bike. Check.

Before you all lose your shit on me, know that I wasn't even out of the parking lot at the Harley dealership and all I have to show for it is a slightly skinned right knee. Plus, it wasn't a good bike for me and I knew it, but so many other women were nervous and changing bikes, that I was trying to be flexible.

So, my previously allocated Night Rod was reallocated to someone else who felt more comfortable on it. I was asked to try the Street Rod. Looked cool to me. The pegs where where I used to them, but, when I sat on it, it seemed a little tall for me. We couldn't take them out until they were allocated, so I just figured if it was tall, then I would just count on being able to throttle it. See, I had a plan.

Any way, I was the first rider in the first group behind the leader. So, I am lined up first to go out right behind Amazon Heart-founder, Meredith. There are 18 women behind me, two who just go licenses yesterday, waiting to see how this is going to start off.

So, I open the throttle, start going, engine cuts, I catch it. I start it up, throw the throttle wide open -- just in case it needs a good clearing -- and ease of the clutch. And the engine cuts. And now, because my feet don't touch the ground, I am trying to hold up a bike that feels like 1,000 pounds that is tipping to my already compromised right side. And... down it goes. Broke the end of the brake lever off, too. Harley dude comes over and tell me that the throttle is really touchy on this bike. Great. Information I could have used previously. Thanks.

So, of course, I hop back on. Really open the throttle and follow Meredith off down an empty road on a college campus with the rest of the women behind me. And... the engine keeps cutting out. I just couldn't seem to get the hang of keeping the throttle open wide enough and stalled every few seconds.

Meredith hops of here bike -- the Night Rod -- and asks if I'd like to switch. Damn straight I do! Of course, this bike has forward controls and my feet feel all funny on it. But, it's low to the ground, my center of gravity is great and I can stand up on it. Guess what? I can ride like a champ. LOVE IT!

So, the group completed its brief tour of Edinburgh, which, by the way, is just spectacular. I'm so in love with this place. And, we returned safely back at Pollack Halls, which is at Edinburgh University. Everyone on the trip is amazing. Everyone has come for their own reasons, but in spirit, there are all women who hate to live with limitations, take on challenges, have great respect for other people and are just dear.

I have been adopted by an Australian woman, Suzanne, whom I believe my mother has sent. She is forever asking if I'm tired and making sure I feel OK. She is also quick with a glass of Cabernet. We get along just fine.

I have a 30 minute Internet card here. And I've got 12 minutes left despite furious typing. So, I am not going to proof as well as I should. And I am not going to put in links for the bikes now. So, if you're interested, you're going to have to do some googling yourself.

Oh. One more thing. No symptoms of low platelets. Honest to God and God bless prednisone.


Tuesday, August 21, 2007

Platelet Watch Summer 2007 (Living What I Say I Do Edition)

Tracy and Dear Friend via Blackberry, 10:00 a.m. yesterday.
Tracy: I'm going to have a fight on my hands. I dropped to 79.
Dear Friend: Aw, F-er. Only six, though. You didn't want those six. They were the bad six.
Tracy: It's not going to be good. He's going to have to work with me. He's gonna be pissed.
Dear Friend: Aw, man. Can you up the pred while you're gone? I know you wouldn't like it, but maybe it would make him feel better? T, I'm sorry. You shouldn't have to fight for this.
Tracy: I have to tell him I'm going. Then ask him what he's gonna do about it.
Dear Friend: Definitely!
10:54 a.m.

Tracy: I am so conflicted. Nurse says the number is fine. It's the instability that is a problem. I'm not showing I can hold them. And I won't have IV Ig for two weeks.
Dear Friend: Is there anything you can do or bring on the road? Or someplace you can stop along the way?
Tracy: Not fair to the other riders. This is ridiculous. Why not a clear yes or no? Why the ambiguity?

11:27 a.m.

Dear Friend: Did you talk to the onco yet?
Tracy: In the waiting room. (Pregnant pause.) You know I'm going to do this, right? I don't have the luxury of "there is is always next year." God. What am I doing?
Dear Friend: F yeah you are going lady
Tracy: I can't live like that. I can't live with the regret. I'm so conflicted.
Dear Friend: Well, just see how the convo goes. See what he thinks.
Tracy: How can I "defy breast cancer on a daily basis" and then... not?

11:54 a.m.

Tracy: He's letting me go.
Dear Friend: You just got a yaaaaay from Ops. I am so happy for you! Are you?
Tracy: Now, I'm terrified.
Dear Friend: Why?
Tracy: Because I am going to do this. I'm going to go.
Dear Friend: You can't think about what-ifs.
Tracy: Nope. I have to go for it.
Dear Friend: You're going to be a rock star.


In my mind, there is no choice. I set this goal and started looking forward to meeting it a long time ago. Yes, I knew complications from my health could jeopardize it. I said as much at the very suggestion of this adventure. But, family and friends recognized this opportunity in all its fabulousness, gave me encouragement, support, (and money), and I set about doing what I always do: trying to live my life the way I want to as best I can.

However, my Healthcare Team, God bless their dedicated, brilliant, supportive souls, has very legitimate concerns about this. They want this for me; they get it. But, their responsibility is to supporting my overall health and keeping me alive as long as I can and want to be as best they can. And my perception of ambiguity does not exactly jive with theirs. Letting me run off halfway around the world on a motorcycle without the support of IV Ig for two weeks hardly skims advisable. In fact, it could set me back and, possibly, put me in a critical situation far from their skill and knowledge. Not to mention their way-too-intimate understanding of me, my health history and how I operate. I am setting out on this adventure fully aware of the risks I am taking. Not only am I temporarily abandoning my IV Ig and stepping out of immediate reach of my Healthcare Team, I am also delaying a return to chemotherapy. Remember that stuff? It's terrifying, yes. But last night, I also realized it is also so F-ing invigorating! Sort of like this:

When I am out on my bike, I work on my leans. Lifting and tilting myself over left or right to get the most out of every single turn I make. Mind you, I suck. But, the thrill is there and my adrenaline pours. I know that with each turn I make, I learn and improve. It's risky and challenging. But it feels awesome!

So, when I was sitting in the infusion room yesterday morning, trying to figure out how and if I could do this, I had a lot of things running through my mind. There was the thought of how on earth could blasting up and down 287 three days a week be any less dangerous than what I intend to do? Then there was: I chose My Oncologist six years ago based on the fact that he was willing to doing things differently, and take well-reasoned but definitely bolder action that other physicians. How can they expect anything else from me? Then, oddly, I thought of someone I hadn't in a few weeks, Miles Levin, the teen aged cancer patient who has given thousands the splendid gift of his passion and joy for life as an example through his oh-so beautifully written blog. He died this weekend just shy of his 19th birthday. And, of course, there are the Beautifuls who have died, Angela, Mary, Shannon and Christine. There is also Lisa M., a driven, vivacious, F-cancer woman if there ever was one. One of my first YSC friends, she died four years ago this week. There are also those who continue to live with this disease, shoving it back fiercely and doing the things they want to maintain and defend their stake in own lives. Like Angie, who trained like hell and just completed a triathlon (!!!) and Dona, who has has the love of darling little boys to sustain her mets-threatened bones as she contemplates her next assault on her disease.

In looking back on the conversation I was having with Dear Friend, I can see that, despite the tug-of-war I felt going on between my practical, sensible self and my F-it, independent self, F-it had already taken the prize and was sitting quietly in the corner waiting for me to notice. People living with cancer have to make all kinds of difficult decisions based on piles of uncertainties during their cancer fight. So, in response to the one I face: I am going to the UK to ride a Harley-Davidson 1,000 miles. I am going to do it with my eyes open and with full understanding of my health situation. Should I become symptomatic, I will get myself home immediately. I will not drop the bike on myself.

I'll post when I can.


Friday, August 17, 2007

Platelet Watch Summer 2007 (Update No. 6)

Cautious Optimism wagged her little tail when she heard the news. 85 platelets. In a vigorous effort to pursuade her oncologist to commit to allowing her to go to the UK, Tracy scrambled furiously over sensible Cautious Optimism. She succeeded only in getting his charming smile, something that sounded a hell of a lot like a patronizing OK to go ahead and pack if she must, and a clear dose of But-I'm-Not-Making-Any-Decisions-Until-Monday. Tracy retreated, saving her resources for the next encounter. She scratched Cautious Optimism's ears in apology for the trouncing and thanked her for staying with her for so long.

Tuesday, August 14, 2007

Platelet Watch Summer 2007 (Update No. 4)

My friend Joy has said, "Hope is a powerful thing." I've held that observation closely since I first heard her express it, and absorbed it into my being in the days and years since. Those five words can instill calm and optimism in me whenever I think of them.

Monday morning's platelet count was 17. I felt Cautious Optimism perk its little head up when I got those results back at the oncologist's office. Dear God, am I actually on the right track now? After IV Ig treatment, I was off to the blood center for another platelet infusion. I bumped to 62. I am hoping that tomorrow, taking into account the time the correct dosage of prednisone has had to work and the added support of IV Ig, I am around 40. Following on this upward track, by Friday I am hoping to have a conversation with my oncologist about a plan for me to go to the UK for the ride.

As if I weren't all nutted out about this already, I received an e-mail from the team at Amazon Heart that outlined the bike allocations. I am slated to ride this.

Hope is a powerful thing.

Sunday, August 12, 2007

A Shout Out to My Love

August 8th is the day I married my best friend of ten years. He is a fantastic man. He is devoted to his family, a super dad, a self-made business man, a talented artist who can create custom engine parts out of shapeless pieces of metal, has an amazing eye for photography, cooks and does his own laundry, is super-handy around the house and has shoulders of steel.

I know this because, thanks to my disease, he's been holding me up for seven of our 12 blissful years of marriage. Don't dismiss this fact as an unmeritorious obligation of marriage. I know many a marriage that has not withstood the test of breast cancer.

Of course I have friends and family who are always willing to do what I need them to do, or be where I need them to be. But My Love just is. All the time. Every day. Every night. Because of him, I have what I desire most: a loving family of our own creation that is my deepest joy.

So, in keeping with this summer's theme of utter chaos, it is completely without shame that I admit to you all that I forgot our anniversary. Entirely. But, before you crucify me, know that My Love also forgot. Oh, yeah. And, had it not been for a phone call from his mother offering good wishes on this important day, God knows when either one of us would have remembered.

Happy 12th Anniversary, My Love. I'm looking forward to so many more. If I can remember them.

I Hope to Stumble Often

I found this interview with Daniel Gilbert, a Harvard psychologist whose book Stumbling Onto Happiness was recently released in paperback, in the May issue of Smithsonian. No, this publication is not on my must-have subscription list. I was sitting at the transfusion center WAITING FOR PLATELETS and picked it up for lack of something better to read.

Anyway. The gist of it is (and here I paraphrase from some legitimate reviews) that when people try to imagine what the future will hold, they make some basic and consistent mistakes. Just as memory plays tricks on us when we try to look backward in time, so does imagination play tricks when we try to look forward. The fact is, happiness is not really what or where we think it is. The book describes what science has to tell us about the uniquely human endeavor to envision the future, and how likely we are to enjoy it when we get there.

So, get out there and start stumbling.

More? Thanks, But No. My Plate Is Quite Full Already.

Holy crap! What the hell happened to my life?! The past couple of weeks are a blur of relentless insanity. I could document the drama for you in excruciating detail, but I ain't gonna do it. I don't think I could remember it all and I would most certainly like to leave any issues my brain has chosen to forget, forgotten. No use looking for trouble (I never say). But, even just giving you the high points is going to take some time. Get a glass of Cabernet before you settle in for this one. It's a bit long.

The Daily Show
This summer, most weekday mornings start with me stopping at the hospital for a CBC to see just how low my platelets are despite transfusion. I have The Kid in tow because after I get stuck and develop a new bruise (I look like a heroine addict at this point), I bring The Kid to day camp. After dropping said Kid at day camp, I hop in the car to drive to work and invariably receive a call from my oncologist saying I need to come in and get platelets. For those of you counting, and I truly don't know why you would be because I am most certainly not, my estimate is at least 15 transfusions in the past six week.

I then go into the office, plow through my e-mails and try to figure out just how out of touch and behind schedule I am. I'll get what I can done until about noon, when I drive up to Westchester for the platelets. Fully infused, I turn around and drive an hour-and-a-half (barring traffic and accidents) back to my office, arriving about 4:00 p.m., where I put in a few more hours and get home about 8:00 p.m. I crash, and start all over again the next day.

The Platelet Puzzle
After discovering that prednisone is apparently not doing a damn thing, my oncologist starts weaning me off and moves on to Plan B, the aforementioned IV Ig. After my insurance company drags its heels, and Ellen, the pit bull of patient advocacy in my oncologist's office has her way with the dimwits at the insurance company, I receive an enormous cooler of IV Ig within a few days. I started treatment last Tuesday, the 7th.

I returned to my oncologist's office on Thursday the 9th. Wait, let me stop here. Because, I don't know if you've been wondering how much I'm blowing on gas for all my NJ/NY gallivanting, but I sure have been. So, I tallied up. Fuel expenditures from July 7 through August 7 comes to $425.05. Yeah. Soak that one in. And, no, I do not drive an SUV or otherwise gas-guzzling monstrosity.

OK, back to Thursday at the oncologist's office. I spend the drive up trying on different scenarios of what the outcome of my first treatment could be. Maybe I've taken a major spike up. That would be the ultimate. Or, I could see a small, but definite increase that signifies things are turning around. That works for me, too. Or, I'm stable. That would suck. But, again, could signify that things are turning around, only more slowly than I'd like. Let's not forget -- I am trying to get to the UK on the 21st. The thought of my count completely tanking eludes me completely. Too bad, that, because that's precisely what it did. One platelet. One.

At this point, I believe I've found the end of the rope. The UK is quickly slipping through my fingers and I am finally starting to acknowledge the fact. Devastated. That's pretty much the word for it. I am infused with IV Ig and sent off for more platelets. I leave with 23. Not great, but whatever. At this point, I am too weary over this to care. I also leave with the knowledge that I will likely be back again the next day because, if the pattern developed over the last month is any indication, my platelets will have dropped overnight and my oncologist will not let me through the weekend without at least a passing level of platelets.

Sure enough, I've got 8 on Friday. Refer back to The Daily Show heading for how the day goes. At least, up until the part where I get to the office.

This is when I learn my oncologist has called what my nurse practitioner calls a "Platelet Guru" for some guidance. For the record, I am not calling him a Platelet Guru until some demonstrable guru-like results pour forth from him.

Anyway, Guru Dude wants me back on the prednisone. 60 mg a day to be precise. Which, as we all may or may not recall, is where I started this whole merry-go-round. So, (And this is where it gets really, really good. So pay attention.) being the intelligent and responsible patient that I am, I pull out my ever-present bottle of prednisone and look at the directions to make sure I am dosing correctly. Because we all know how important proper dosing is. Instructions are "Take two tablets once a day." Got that part? Good. Now, for some godunknown reason, I decide to check out what size tablets I have been prescribed. (I don't know about you, but I'm guessing 30 mg.) After several seconds of searching the label for the dose, I finally see it: 5 mg. What the F!

I am on the phone to my nurse practitioner in an instant. As you can imagine, I am also beyond livid. I have not been at a therapeutic dose since this utterly ridiculous and, let's not forget, life-threatening situation started over a month ago. The way I see it, I may as well have been taking Pez. This realization shoots my thoughts in multiple directions -- Who the hell do I kill? I may not see the UK and it's because someone made a mistake? I've been in a precarious and dangerous health situation and pretty much not receiving treatment for it for a month? Will this discovery finally make the difference and get me to the UK?

God. I don't know. I just don't know.

What I do know, is that I couldn't have made it through Friday had it not been for Dear Friend, who blew one of her two summer half-days to drive my sorry self, in the rain, up to Westchester for platelets. I just couldn't do it myself. My head was pounding from the strain of the past month and my newly acquired knowledge. I felt terrible taking help, as per usual. I'm trying to assuage myself by ascribing Dear Friend's selfless act to her not-so-hidden desire to give my car a test drive. Hey, I do what I have to do.