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.

Cheers!

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.

Platelet Watch Summer 2007 (Update No. 5)

73

And that's all I have to say about that.

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.

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.

Platelet Watch Summer 2007 (Update No. 3)

Platelets were down to 10 this morning. My nurse practitioner said she would have let me skate for the day if it wasn't Friday. But it is. So, no skating today. Just infusing. I hauled my sorry, clot-deficient self up to Westchester and left the medical center with 43 platelets circulating through my bruised body.

I was actually feeling pretty optimistic about getting back to the office early in the afternoon and cranking through some things that needed to get done. That optimism lasted about 15 minutes. 'Cause that's when I got to the aftermath of this. Good intentions averted.

I also got confirmation today that the previously mentioned Prosorba Column is indeed no longer available. I am to return to my oncologist's office on Monday to discuss IV Ig therapy. I don't feel like doing the research now. So, go ahead and do it yourself if you can't wait. Perhaps start here. Let me know what you find out.

Finally, this has had me and several colleagues with similarly sophomoric senses of humor cracking up this week. Yes, we are that highbrow.

Platelet Watch Summer 2007 (Update No. 2)

Nine! The little f-ing platelets dropped to nine! So, after calming my pissed-off self down (a bit), I headed to the medical center for a transfusion this morning. I left with 43. We'll see how long that lasts.

I also had a conversation with my oncologist. He got the results of my antiplatelet antibody test back, and they show that I am indeed making an antibody against my platelets. Stupid, treacherous body. His recommendation is to have a Prosorba Column to filter my blood and get rid of the antibodies. Now I'm trying to find someplace in this state that does it. If Wikipedia is to be believed, and yes, that is the latest, most seemingly accurate and relevant information I have been able to find thus far on this treatment, this device isn't even produced anymore. But, I don't know if that means that facilities that have it can still do it, or if there are super-special accoutrements that are needed in order to utilize the device which are also unavailable.

Further, I asked my oncologist how confident he was that this is the only thing that is acting upon my platelets. He said he wasn't 100 percent confident, but is pleased that we now have something to take action against. Fine. I suspected that he wasn't completely convinced that this is the sole issue, and I am always down with action plans. So, we'll roll with this for now.

On a completely different note, on my drives up to New York and back, I received appreciative honks (I'm interpreting them as appreciative and I don't care what you think) from half-a-dozen long-haul truckers. Which proves one thing: If I wear a dress, and am traveling fast enough past a bored and lonely man, I am still perceived as attractive. At least to six of them, anyway.

Connection Incomplete

At 8:00 p.m. the the remaining participants of the Beautiful Eight DVD and their discussion guide were supposed to regroup to reconnect, share our grief and gather our collective strength following the recent decimation of our ranks. Two courageous young women of generous spirit swiped from us in less than a month. The Beautiful Eight have become the Beautiful Four in less than two years.

But, as befitting a woman who chooses to live her life despite the diagnosis, our conference call leader was otherwise engaged and forgot to phone in, so our call did not come together as planned. I, myself, was late calling in because things other than cancer needed my attention.

My Beautiful Eight/Call Leader friend phoned to apologize (as if that was necessary) and though I was happy to hear from her I could hear the strain, weariness and fear in her voice. Bone mets that require daily radiation, progression in previously identified sites, and a new systemic therapy are beating on her. As is her job and her relentless dedication to caring for her family. She's a mom with two small boys. Would you expect anything else? Such drive. Such devotion. Such precariousness.

It's frustrating and painful in its familiarity. Living with it. It's harder than you know.

Platelet Watch Summer 2007 (Update No. 1)

As you may recall, Friday's platelet count was 13. Today's count: 13. I should be pleased. I really, really should. Stable is good. But, they are not going up. And I am far too low to be treated. I need to be at 70 for that. Worst of all (Worse than not getting treated? Did I just say that?) I am not getting any closer to the UK, which is where I want to be in a month and I'm getting increasingly resentful of my oncologist's ban on my motorcycle. If I didn't have bruises on my hiney from horseback riding, violating that ban would be under serious consideration right now.

Platelet Watch Summer 2007 (T-Shirts Coming Soon!)

Platelet count on Monday, July 16: 12
Platelet count on Friday, July 20: 13
Analysis and action items: Platelets are on the rise for the first time in approximately six weeks! No transfusion. CBC to be repeated on Monday, July 23.

Prednisone level: 60 mg daily
Prednisone-induced food cravings satisfied yesterday: guacamole, pizza, macaroni salad, chocolate chip cookies
Weight gain since initiation of Prednisone therapy: Five pounds