More "Things To Do Before You Die"

A few months ago, I blogged about the current publishing trend of listing things one should see, do, eat or visit before kicking the bucket. Since then, I've had a lot of time to mull over the things I want to do and foods I want to eat before the final chapter of my life.

All of this contemplation has made me realize that I've been tall on talk and short on action. Just yesterday a friend suggested that a group get together at Papadakis Tavern, the plate-smashing, Greek-dancing restaurant in San Pedro. George and I have been talking about crashing China (the dinnerware, not the country) with our friends for more than 20 years. Isn't it time we just did it and found out for ourselves that we weren't missing out on a thing?

And ever since seeing Terrie Silverman (artist-in-residence at Beyond Baroque) and two of her students read their work at an IWOSC Reads Its Own event two years ago, I've talked about taking Terrie's class. I've blathered about working on a monologue and fantasized about one day doing a one-woman show. But I've never moved beyond the stage of attending one-woman shows as "research."

All of that is about to change. A few weeks ago, I received a forwarded email from Terrie. The producer of "The Big C," a June 16 cancer survivor month event at the Hollywood Presbyterian Medical Center, was looking for performance pieces. After a few emails with the producer and a meeting with Terrie, I decided to turn "Pole Dancing" into a ten-minute monologue.

Since I didn't know from day to day if I'd be at Hotel Hope, I ultimately had to let The Big C go the way of The Big D. Terrie invited me to participate in her Gorgeous Stories event in Pasadena on June 22, but I'll definitely (or as definitely as my life goes these days) be in the Big House on that day and will, once again, have to pass.

At first, I was a little down about these "lost opportunities," but I soon realized that we live in a town (and a world) with new chances around every corner. An email from IWOSC announced that they're hosting another IWOSC Reads Its Own event on July 15 at Dutton's Bookstore. Terrie will host another Gorgeous Stories event in a few weeks. Who knows if I'll be in or out of the hospital on either of those dates, but the piece is ready (or at least a respectable "work in progress"), the red feather boas are waiting, and I'm practicing "pole dancing" in public, much to the horror of my free-spirited teen.

I know I've asked this question before, but here we go again: What's on YOUR list of things to do, see or eat before you die?

Up, Up and (Almost) Away

All of your prayers, positive thoughts, powerful imagery and crossed fingers, toes and eyes appear to have done the trick. My platelet count rose from 50,000 to 90,000 over the last week.

I'm still just under the 100,000 absolute minimum required for admission, but I'm almost there. I'll go back again on Thursday for yet another blood draw and consultation, but it should be a slam dunk. (Oops, I should be careful about the "dunk" imagery.)

This morning I was pleased to meet Emily, the nurse coordinator for my stem cell transplant. She'll be a key member of "Team Susan" during this process. We're all still hoping that it will be an auto (my own harvested stem cells) rather than an allo (donor) transplant, but Emily said that there's no way to know if I'll have enough stem cells until we're actually in harvest mode.

My calendar dependence is gradually going "up, up and away," but I'm still working on letting go of having to know and control the outcomes of everything else in advance.



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Boing, Boing, Boing

After I got the "bad news" on Monday, I spent 24 hours wallowing, worrying and obsessing. But I hit my nadir and came bouncing back, ready to enjoy a few more days of feeling the best physically since BC (before chemo). It's been nearly five weeks since the high-dose toxins have coursed through my veins.

All of this begs the question: If I'M so physically and emotionally resilient, what's with my platelets? I'm still dreaming of platelets multiplying, bouncing and soaring, but I'm prepared for any results that may come my way on Monday.

Winning the Lottery

I was so moved after reading the comments on Paula's "Platelets Behaving Badly" post. You are just like me in that you have a need to take ACTION. I was awake into the wee hours because I was developing a plan to mobilize the Southern Cal. Hapa (half Asian, half Caucasian) community. Then I realized that I'm jumping ahead of myself. (I still hope that my platelets will be fruitful and multiply.)

The chances that any of my friends would be a match for me are pretty slim, but the odds that any of you could be a match to another "friend in need" are less staggering. Every day, thousands of patients are searching for a donor.

Several of the donors on the Asians for Miracle Marrow Match website described finding out that they were a life-saving match felt like "winning the lottery." Let me ask you this: If you could choose between cashing in on a million dollars in the California Lottery or saving a life, which would you choose? (Luckily, it's not an "either or" proposition - you can buy lottery tickets AND register as a possible donor.)

As Paula mentioned, the process is as simple as swiping a swab in the inner cheek. And you don't even have to leave home to do it. You can sign up online with the National Bone Marrow Program Registry and they'll send you the tissue-typing kit for a $52 donation.


If you'd prefer to do it in person, there are many opportunities in Southern California, including these. If you're not in Southern California, search the NBMP website for a drive near you. The Asians for Miracle Marrow Match also hosts ongoing opportunities throughout the Southland. (And, no, they won't turn you away if you're not Asian.)

If you are a match, the process of donating stem cells is surprisingly simple - a little like donating platelets. One IV takes out the blood, the stem cells are extracted and then the blood (sans stem cells) is pumped back in through another IV. To find out more, check out the FAQ on the National Bone Marrow Program webwsite.

How is my life like a Stephen King novel?

When I began this blog, I hoped (and feared) that the entries would eventually become predictable, dull and monotonous. "Check in to Hotel Hope. Get high doses of chemo. Go home for two weeks. Repeat." And I looked forward to the day when my entries would put readers to sleep ("Had another good day today") so that I could switch over to my "Open Mouth, Insert Fork" blog.

I wanted my story to be the safe, formulaic work of a hack, complete with a happy ending.

But my saga is beginning to be more like a Stephen King novel. Not in the pig's-blood-dumping-on-the-prom-queen way. In the unpredictable, sitting-at-the-keyboard, I-have-no-idea-where-this-novel-is-going style that I've read that King employs when writing one of his spine-tingling tales.

If I wrote fiction, I'm afraid I'd have to know the endng in advance and would use a detailed outline to make sure I got there. Uncertainty be damned!

But now I'm adapting to a high level of uncertainty and many unanswered questions. And I have no idea how this story is going to end.

Will my platelets rise sufficiently in one week? Will I need to endure another bone marrow biopsy as Dr. Forman suggested? Will I be able to continue Hyper CVAD at a reduced dosage? Will the reduced dosage and prolonged schedule be a big enough gun to deal with my blastic variety of mantle cell lymphoma? Will my bone marrow be able to pump out a sufficient quantity of stem cells for the autologous stem cell transplant? If not, is an allogeneic (donor) stem cell transplant the right decision? If so, will a family member be a match? If not, will I find a match on the national registry? Will I develop graft versus host disease, a common complication of donor transplants? Will I reach complete remission? If so, how long will I stay there?

I wish I could flip ahead, find out the answers to these questions and learn the ending. But I'm just going to have to take it one spine-tingling page at a time.

Platelets behaving badly

Were you guys sending Susan platelet-boosting vibes this weekend? Yeah, me too!

Let's all kick it up a notch because you-know-who's lab results were basically unchanged from last week. Ultra-low numbers mean no chemo, which means the whole process gets stretched out.

According to Susan, Dr. Foreman actually used the word "worried." No one wants to hear that type of language from an oncologist! After hearing that, she was bummed enough to:

a) drown her sorrows with some retail therapy, and

b) call me from Costco to request that I update the blog with this crappy news.

What's really troubling is that this slooooooooow platelet production problem may prevent her from doing an autologous bone marrow transplant. That is, harvesting her own post-chemo cells, zeroing out her white blood cells, and then transplanting her own now-clean cells back into the mix. (Is that mostly right, Suze?)

So...there's a chance she may need to find a bone marrow donor who has the same 12 key markers she does. Sure, CoH will check the national bone marrow registry, but her half-Asian-ness could make finding a match more difficult.

Let's be proactive! For instance, if you have any other half-Caucasian/half-Asian friends, why not start sucking up to them now? In a few months, they may be more than happy to audition to be Susan's donor.

I don't have all the details, but the initial test for donors is just a swipe with a swab on the inside of the cheek. The actual donation process does not take long. I'm sure Susan will give us the full poop.

The good news is that Susan feels great, platelet-challenged as she is. She'll head back to CoH next Monday for another blood test.

Platelets, people. THINK PLATELETS!

Is today the day?

I sure hope so! I have a 3:30 pm appointment for a blood draw and consultation with Dr. Forman. We had our traditional sukiyaki send-off dinner at home last night. My bags are packed. The feather boas (more about this later) are rarin' to be put into service.

I'll post from my remote location at CoH as soon as I get the word.