What Made Me Cry Today

Signature found on the YSC board:

“I am 22 years old, turning 23 October 3.

Gyno found a lump 8/22/07.
It is 4-5cm's.
Diagnosed as cancer 8/29/07.
Type: Invasive Ductal
More info to come.

I want this thing out of my chest. ASAP.

Also, I love cats and Halloween.”

PSA: What Not to Say

On the YSC boards, there's a discussion thread that resurfaces periodically about the things people to say (meaning well) that sort of miss the mark.

I think the biggest one is "Well, at least they caught it early." Basically, just because someone is young doesn't mean they caught it early, so that's potentially a big foot in mouth moment.

Also, back in the olden days of breast cancer diagnosis, the main classification they used was stage (stage I, stage II, etc.). Stages are still used, but they are one of many factors now, including:
- hormone receptor status
- Her2/neu status
- tumor grade
- lymphovascular invasion (or not)
- lymph node involvement
- age
- genetic status
- family history
- whether the cancer has spread elsewhere (aka, metastasis)

All of these factors impact a) how fast the cancer grew in the first place, and b) the patient's treatment options and prognosis. So "early" doesn't really have much meaning.

Tickets Now on Sale! (Shameless Self-Promotion)

Tickets are now on sale for my short play that is going to be in Week 1 of the Estrogenius Festival at Manhattan Theatre Source.

To buy tickets, simply got to the Source website and click on "Buy Tickets Online."

The performance dates are:
Wednesday, September 19th at 8pm
Thursday, September 20th at 8pm
Friday, September 21st at 8pm
Saturday, September 22nd at 7pm and 9:30pm

Hope to see you there!

Serious Games

At work, I've had the opportunity to participate on a "serious games" project, which looked at the use of online games to convey environmental or health messages (while still being entertaining and challenging). As a result, I've done a little reading in this area and it's sort of a fascinating world.

This story is just the newest twist--it seems an online role-playing game inadvertently developed a plague and real-life academics are studying it to learn about how epidemics spread in society:
http://www.foxnews.com/story/0,2933,293920,00.html

For the Record: Treatment #7

Feel free to skip this one, I just figured I should jot this stuff down while it's fresh in my memory...

Friday
Drove into the city and parked at the CHEAP garage. (At the last treatment, the guy at the front desk FINALLY told us the garage on the next block did a special rate for the Center. We'd been parking at the closer garage which cost $31 each time.)

Arrived at SVCCC at 10:30am. Had bloodwork done. Took the blood from my hand rather than the usual crook of the arm. I think this is because they had trouble with my port during the last treatment and so wanted to "save" the vein in case they needed it.

As usual, had to wait to see the onc. Finally saw her around 11:45am (apptmt was for 11am). She told me I didn't have to do the Neulasta if I didn't want to, altho it could risk getting my next (and final) treatment on time if my counts were too low. An alternative would be to wait a week, come in to get my counts checked and if they were low, do one (or more) shots of Neupogen instead.

She also told me that she and her nurse will be out on August 31st, but they could write the orders in advance so I could still do my treatment. If I prefer to have at least her nurse there, I can move the treatment to Thurs (particularly if I do the Neulasta).

She agreed to give me some more Vicodin (I had been using the "leftovers" from my surgery, but since I only had a few left, was using them VERY sparingly, like 1 per treatment.)

Finally started treatment around 12:30ish. As usual, started with a Pepcid first (orally) and then the benadryl and decadron (by IV). The chemo nurse, Meghan, had a little trouble with the port, but not as much as the chemo nurse had last time. This thing just needs to work one more time...

No nausea with the Taxol, so actually ate lunch: turkey sandwich and a nectarine.

The benadryl makes me sleepy, so slept for a good chunk of the treatment. The treatment chair comes equipped with a personal TV w/movie channels so dozed through/watched "It Could Happen to You," "Men in Black II" and "Miss Congeniality 2." The hubby took a walk to Barnes & Noble and got me a copy of "Stranger Than Fiction." Left around 5pm.

In the car, got my usual bag of goodies from mom. Each treatment, she gives me a plush dog, so we now have a collection at the foot of our bed. She also gave me a biography of Edith Wharton, a beaded ring and carved wooden box.

We ordered in Italian for dinner. The benadryl had worn off, so I actually was awake for the evening and went to bed at a normal hour.

Saturday
Basically felt good all day.

The hubby went to help my cousin & wife paint their new apartment. Mom and I slept late. Her hubby came and took us to lunch down by the river (it was a beautiful day). Then Mom and her hubby went home and I watched more movies ("Men in Black" and "Being John Malkovich"). When my hubby got home, we ordered in Chinese and had a mini-"Northern Exposure" marathon. Also did the Neulasta shot. Decided not to take any chances on having to postpone my final treatment.

Sunday
Went to my mom's. My brother came too and the 3 of us played Scrabble all afternoon.

The "tenderness" started to set in. After every treatment, I get this thing (I may have described it before) where all my soft tissue feels really tender to the touch. So, basically, if I don't move, I'm fine. But if I move or someone touches me, it hurts.

I took a Vicodin when I got home and another late that night.

Monday
Took a sick day. Read/dozed all morning. Finally got up around 1:30pm. The tenderness dissipated during the day.

Went out to dinner at the restaurant on the corner w/the hubby and his friend from work. During dinner, the bone pain started to set in (ah, joy). Took a Vicodin.

Tuesday
Felt basically normal.

Worked from home. I was originally planning to go into work in the afternoon, but the weather was really crappy so decided it was better to just work from home the whole day. Got caught up on e-mail, participated on a conference call, did some work-related reading.

At bedtime, the bone pain was back (it hadn't really bothered me all day) so took a Vicodin in to get to sleep.

Wednesday
Back to normal and back at work.

Only one more to go and the next one should be "easier" because NO NEULASTA!

Looking for Rehearsal Space

Ok, so this is completely off-topic. As you know, I have a new short play that's going to be in the Estrogenius Festival at Manhattan Theatre Source Sept 19-22.

We are looking for (free) evening rehearsal space the week of September 10th. Ideally, 2 .5 hrs each night Mon-Thu. It doesn't have to be a theatre space--a conference room will do--as long as there's clear space to work (i.e., no permanent conference table in the middle of the room).

If you have access to such a space or any ideas, shoot them to me.

Thanks!

The Insurance Care Package

When I first was diagnosed, I got a care package from our insurance company.

I'm not kidding.

Among other things, it included a hardcover, spiral-bound cookbook, "Eating Well Through Cancer" with chapter headings like "Day of Chemotherapy," "Neutropenia," "Diarrhea," "Constipation," "Sore Mouth or Throat." Very appetizing.

It also included "My Healing Companion," a sort-of workbook/journal/self-help book for cancer patients complete with introduction by Linda Ellerbee (a breast cancer survivor). I read a couple of reviews on Amazon by people who thought it was a great book, but for me, anything with activity instructions that begin "Grab a pen, pencil or crayon..." (emphasis added) creates this sort of visceral negative reaction in me. Really? This will all be OK if I just pick up a crayon and list my best qualities? (The title page also puts me off. It reads: "My Healing Companion was completed by [space for name] with help from my friend, Beverly Katherine Kirkhart.")

I must admit that when I first got the package, I was impressed because, I don't know, I guess because the insurance company actually seemed to care about what was happening. And I'm sure the people who wrote these books did it with the best of intentions and goodness of heart and so I don't like to denigrate their efforts. But I also know that any cookbook with a section titled "Diarrhea" is not something I'm going to ever use a recipe from. And I already talked about the whole crayon thing. So, into the used book donation bag they go. Hopefully they will be found by someone more appreciative.

FAQ: Am I Working?

A couple of folks have asked me whether I've been working through chemo.

The answer is a qualified yes.

Before all this started, I already worked a "compressed" schedule, which means I work a longer day Mon-Thu and then have every other Friday off. Those every-other-Fridays are now my treatment days. On top of that, I have a "medical flexiplace" agreement in place, which means I can work from home all or part of the week following my treatment. The past 2 treatments, I've taken the Monday following as a sick day and then worked all or part of Tuesday from home. I also go in late when I need to.

So, the short answer is that I am working, but in a very good situation with a very understanding and supportive boss for which I am very grateful.

(And this week I'm on vacation.)

Loss by Attrition

I just did a bit of spring cleaning (I know, I'm late) and decided to donate a small brass mirror to the local thrift shop. Not a big deal, I know. Except that it was Jeanne's. Jeanne, for those who don't know, was my mom's sister and best friend and my godmother, aunt, mentor and very close friend (and a sister and aunt and friend to many of the folks who read this blog) who died of breast cancer in 1990. (I promise this is not an entry about breast cancer.)

When Jeanne first died and we went through her belongings, I took quite a bit of her stuff: clothes I thought I might wear, a couple of favorite pieces of jewelry, some decorative items, some kitchen stuff--I was in college at the time and moving into an apartment and so any kind of kitchen stuff was welcome--and even some makeup.

But that was in 1990. And I've moved...let me count...9 times since then. (No, I'm not kidding. I just counted.) And with each move--moves being the times when you really look at your belongings and ask the question, "Do I need this?" (or, more specifically, "Would I rather pack this or toss this?")--I've let a couple of things go. In the early years, it was some of the clothes that I quickly realized I would never wear and some of the kitchen stuff--whenever I move I always get the urge to upgrade my kitchen stuff. (Oddly, I held onto the makeup--though I never used it--longer than was reasonable or even sanitary.)

In more recent years, there have been some other things of no inherent sentimental value, but which had become sentimental because I'd held onto them for so long. Like a cheap makeup mirror in a plastic frame (one of those mirrors that shows your normal reflection on one side and a magnified reflection--which I NEVER use, regular is scary enough, thank you--on the other). At first the plastic frame was chipped. Then it was cracked. And then more cracked. And I never used it anyway. In our last apartment, it sat up on top of the wall cabinet and collected dust. When we moved last year, I finally took a good, long, hard look at it and realized it was a purchase Jeanne had probably made with little thought or care. If she had been alive, she likely would have tossed it or replaced it several times over the SIXTEEN YEARS I had hung onto it as if it were a precious (ok, neglected) family heirloom. And so I tossed it. But--irrational though this is--it made me a little bit sad. Because it's one less thing in my life that was hers.

And so each time I assess a bit of the flotsam or jetsam from her life that's been woven into mine, I find myself asking the ridiculously hard question: do I keep it because it was hers, or do I acknowledge that even she wouldn't have kept it this long? Does it really honor her memory to save a drugstore mirror? Or even a brass one?

The rational part of my brain says no. Moreover, it says they're not even "hers" anymore. In most cases, I've now owned them far longer than she did. But another part of me feels it as a loss. A diminution of the things circulating in the world of the people who loved her who value them for that reason: because they were hers. And so, in a way, less of her circulating in our world.

Loss by attrition.


Postscript:
As I've been writing this, I've been trying to remember what other items of hers I still have. It's harder than you'd think because, as evidenced above, some of the things are really mundane items that have been woven into my life. So, without further ado, here's my running list. I still have:
- her brown leather jacket that I still wear although it's starting to fall apart
- her explosion ring (my first Joan Michlin piece)
- a brass box filled with her business cards advertising her services as a Certified Hypnotherapist and MariEl healer
- a framed print that I adore, but that needs to be re-framed because the glass was broken in the last move
- a black shawl that I keep at work
- a bamboo footstool
- a rattan storage cube
- a wooden jewelry box inlaid w/brass
- a small, velvet-lined wood box
- a mounted photo she took of fishing boats in Provincetown
- a couple of her drawings
- some of her books
- a garlic press

I'm ready for hair...(in the right places)

I know I acclimated to the losing the hair thing much better than I expected to, but it's getting old now. I'd like at least a little re-growth. I'm actually missing the buzz cut the hubby gave me when my hair starting falling out.

I've heard that some people's hair starts to grow back on Taxol (the drug I'm on now), but so far, I don't see anything.

Actually, what has happened is that my eyebrows and eyelashes have started to fall out.

Not my arm hair though.

And I need to shave my legs again.

Not fair.

Only 1 More Shot!

Whoopee!!!!!

I think I mentioned before that I've had to give myself an injection of Neulasta 24hrs after every treatment to keep my white blood cells high enough to keep getting chemo (i.e., to keep myself well enough to keep getting poisoned...). Anyway, I just talked to the nurse today and, of course, I don't need a Neulasta shot after my final treatment because it's the final one. (I should have figured this out myself, but didn't. Chalk it up to chemo brain.) So that means only 1 more. Yippee!!!

Estrogenius Festival Benefit - This Sunday!

ESTROGENIUS FESTIVAL BENEFIT -- SUNDAY, AUGUST 12th from 5 - 10 pm
Live Music! Manbake! Good Times! Celebrate the 2007 EstroGenius Festival on Sunday, August 12th from 5 pm until 10 pm. Meet and greet Team Estro -- the producers, designers, writers, actors, dancers, and many other people. Hear live music by Athena Reich, Sarah Tracey, The Manson Family Singers, Mark Aaron James, Nancy Sirianni & Doug Silver and Jonathan Holtzman. Enjoy yummy treats (cookies, cakes, pies) baked by the Men of Manhattan Theatre Source at the EstroGenius Festival Benefit. A manbake like no other!

Manhattan Theatre Source
177 MacDougal St. (between W 8th St. & Waverly Place)
Subway: A/C/E or B/D/F/V to W 4th
5 pm until 10 pm
Tix: $10 | $5 for Estro participants

All proceeds benefit the EstroGenius Festival, the premier showcase for female creativity, running September 19 through October 13 at Manhattan Theatre Source. Check it out at www.estrogenius.org.

One of the many injustices of this whole thing...

The steroids they give you to stave off the nausea of chemo can actually cause you to GAIN weight.

So, for those of you who were wondering if I've suddenly dropped a bunch of weight, the answer is no.

I am happy to report, though, that I've managed not to gain any. Probably out of pure stubbornness.

Between the nausea from treatments 3 & 4 and the deranged tastebuds my eating habits have been, shall we say, a bit weird.

Not One, But Two...

My mom and I went to the theatre last night and, as we were coming out the ladies' room, we saw not one, but two women sitting on the chaise lounge OUTSIDE the bathroom flossing their teeth.

Which reminded me of a day about a year ago when I was walking through SoHo and the Village and saw a guy go by on a bicycle with a parrot on his shoulder. When he passed, I realized I had walked by a woman with a parrot on her shoulder about a 1/2 hour before. The weird part was, I hadn't really noticed her, she was just part of the NYC scenery. It wasn't until I saw the guy on the bike that something in my brain went, "Wait a minute, that's the SECOND parrot you've seen today" and the image of the first parrot popped into my head.

Which is all to say that when you live and/or work in NYC, seeing one weird thing isn't enough to phase you, you have to see at least two before you even notice.