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Monday, September 27, 2010

I've got a date...a surgery date

I'm writing from Topsail Beach--I think there's sort've a nice symmatery that I went to the coast right before chemo and I'm at a different coast right after chemo. My Aunt Joyce and Uncle Nap came into NC to visit with us and have decided to sweep us up and take us to the coast for some R&R.

Which is nice because it's now T-minus 21 days and counting for my surgery. Yes, I have a date for my surgery: Monday, October 18. I'll be getting details about it after I meet with my surgeon this upcoming Wednesday.

My mother will be flying in on Sat, Oct 16 and will stay and help with my healing/recovery through Nov. 3. And because so many of our generous friends have asked me if I'll do another sign-up sheet for meals during the surgery recuperation, we have graciously and gratefully complied--here it is:

Surgery Sign-Up for Food Drop Offs

[We have felt sheepish about asking for food help and gifts a second time, but so many folks assure me that they like the sign-up sheet and want to help out. And since we are blessed with so many friends who are wonderful cooks, we are very appreciative of everyone's efforts on our behalf]

[UPDATE: TUESDAY, SEPTEMBER 28, 6:30PM: We have so many generous friends/family! The sign-up sheet has been filled in record time--THANK YOU!]

So on the health front, I'm doing fine--still dealing with some fatigue/exhaustion, and my fingertips are still numb, but I'm looking forward to those symptoms subsiding and for my hair to finally start growing back!

Finally, in other breast-cancer related news, two events for folks who are local:

*Tuesday, October 12 @4pm at the Carolina Women's Center at UNC Chapel Hill
--I'll be part of a breast cancer awareness panel that is being sponsored by the CWC as part of their breast cancer awareness education month activities.

*Friday, October 15 @7pm. The Asian American sorority, alpha Kappa Delta Phi will be holding their annual charity ball at the Carolina Inn -- all proceeds will go to the Avon Foundation breast cancer awareness/research (for more info, see the flyer below)

Friday, September 17, 2010

Yesterday was my 8th and FINAL round of chemo

[apologies to my vegan/vegetarian friends but]

Stick a fork in me--I'M DONE!

Yesterday marked my 8th and final round of chemotherapy. From June 10 to September 16 I've had 4 rounds of AC chemo--the stuff that made me feel truly bad and weird and nauseous and that caused me to lose my hair 3 weeks into treatment. And then 4 rounds of Taxol, which was much better on my system, but it still gave me muscle and joint pain, and the chemo brain, while better on Taxol, is still ever present, as is the fatigue, which is a combination of the cumulative effects of all this poison in my body and my lowered red blood cells.

But now that's all over! Soon my hair will be growing back (I'm hopeful in another 2-3 weeks I'll be feeling some peach fuzz covering my scalp). And as my red blood cells start to produce more and more and as the chemo leaves my body, hopefully I'll feel more energetic. My nurse Delma did warn me that it could take a couple of months--which will probably be the case especially, with me, since I'm meeting in 2 weeks with my surgeon to go over my bi-lateral (double) mastectomy procedure. I think he's going to be in touch with me by email to set a firm date, but I think we're looking at mid-October. If I had to guess, it'll be either the 14-15 or 21-22.

As soon as I know, I'll let all of YOU know. Matthew and I have been really overwhelmed with everyone's generosity--and folks have been asking if they can do MORE, esp. around the time of the surgery. Honestly, I had not originally planned to do any more meal drop off sign-ups or Bruno walking because I didn't want to overstep the bounds of hospitality, and I esp. didn't want to seem like we were taking advantage of everyone's good will. But Francesca and Kathy and Minrose and Ruth and Joy and Jane D., and Beverly have all ASSURED ME that it would be nice to have another sign-up sheet. So...we'll be putting one up just as soon as I know what the surgery schedule is going to be.

And now that the chemo is done, I do want to have at least a week where I'm not projecting ahead to the next thing. First of all, I know that I'm going to show symptoms starting Sat. evening--which means joint/muscle pain, which got pretty severe last time, so I may be drugged up on percocette Sat-Mon. But from an emotional p.o.v., I know that the next step--the surgery--is going to be challenging for me in many, many ways. I've been reading a lot of cancer memoirs and it's not a pretty picture, but it does give me a sense of the kind of pain (and hopefully pain management) that I'll be experiencing and the emotional/psychological pain that will come as well. And I know that I'll need at minimum 2 weeks of intense housebound/bedbound healing, and probably another 4-6 weeks of physical therapy and just being gentle with myself.

But getting back to yesterday, honestly I was so happy I was nearly giddy--the first time I can ever say that about going in for a chemo treatment! Matthew and I wanted to do something nice for all the staff, nurses, and docs and so we bought some gifts from Southern Season and delivered them to the first floor registration (where I always began every visit verifying that I hadn't moved since the last time I was there, and I also had to verify my name and date of birth--wouldn't it be funny/odd/bizarre if someone ELSE was trying to get chemo in place of a friend/family member?)

Anyway, I'm not a very huggy person [Pause: BUT WAIT, I've hugged Jennifer lots of times!]. Yes, it's true. I'm not a very huggy person. I don't know if it's just me, or if I should do the typical Asian American thing and tell you that we didn't hug a lot in my family (the standard trope found in much coming-of-age/young adult literature describing the dynamics of immigrant parents and their American born children). Seriously, though, I learned to hug when I got to high school and college [and NO as crunchy-granola as UCSB was, they did NOT teach a class on Hugging 101, although if they did, I can assure you that I would have received at least 1 credit towards graduation for it--another notorious thing about UCSB's curriculum, you could get college credit for the darndest things). And while I am fine with it--really--I wouldn't say that I'm normally the first one to go in for a hug. But in this case, being hugged by all the receptionists, nurses and doctors because it was my last day of chemo gave me a warm fuzzy. And I tried not to think about the number of germs there are in a hospital or that I had been telling friends that I wasn't hugging anymore because I was worried about my compromised immune system. Which, by the way, I'm still a bit nervous about going into surgery because I really don't want anything to delay surgery, like getting an infection or the flu. So I may still not be hugging folks, f.y.i.

It was a rather long day--we go there at 10:30am and didn't leave until 6:30pm. But just as I was finishing up my chemo treatment, the nurses came in and surprised me with a going away song, mardi gras beads, and a certificate! I took a photo of the few that would let me take a photo with them, including my nurse Julie, who very appropriately was the first nurse I ever had on the chemo ward, and I was tickled pink to have her as my last nurse on the chemo ward--chair #14 (and btw, Julie promised me not to show her photo to anyone--I would love to post the one with all the nurses and the pharmacist, Chris, but that will just have to be part of my private photo stash).

So to wrap things up I'm just going to leave you with a series of photos we took at the hospital yesterday to commemorate my last chemo treatment:

These were the gifts we gave to the registration desk, 2nd floor oncology & 3rd floor chemotherapy (actually, the big tower has a duplicate to the left that you can't see)

Most of what we did on the Oncology floor was wait to see nurses and doctors, so here is Matthew on the phone while we're waiting for the nurse to draw blood for my labwork. Maybe he's also practicing for when he becomes a nurse one day!

A self-portrait in the mirror--yes, I'm also trying to wait patiently for my blood to be drawn.

This is the pump that they used to administer my chemo drugs--bye bye pump!

Matthew goofing around with me in the chemo ward, trying to make me laugh

Me getting my chemo award! As the nurses all said, they hope I'll come to visit but the hope to NEVER see me in the chemo chair again. Couldn't agree more!

Finally, Matthew decided he wanted to see what it was like to be a strawberry blond--what do you think???!!!!

Wednesday, September 8, 2010

More musings on my mortality

[Health Update: My symptoms are pretty constant/consistent since the first round of Taxol, with perhaps more fatigue and increased pain (I was on a steady diet of percocette until today) as well as increased neuropathy/numbness in my fingertips/first digit of my fingers and now my toes. All in all I'm OK, just looking forward to the last round of chemo and for this part of my treatment to be OVER!]

I know I've already pondered the meaning of my life and what I want my life to be about in a previous post, but I must confess (and again, let me reiterate that I am not depressed or overly anxious, at least not more anxious than I think anyone else going through chemo and about to have mastectomy surgery is) that I still think about these existential questions. But I also have been thinking about my death--or about death in general--and about how we memorialize those who die--and about what I want in particular for my own death.

I guess this is what I mean. I can't quite envision (and lets be honest, I don't really want to envision) my death. I hope it will be when I'm much older than I am now--it'd be nice for me to live until 80--twice my current lifespan--and honestly barring a recurrence of cancer or some tragic accident or other fatal illness, this should be possible since 3 of my 4 grandparents lived past 80--and my maternal grandmother is still doing very well at 97 (yes, quite incredible and noteworthy for a woman who has never had to be in a hospital aside from the births of her 9 children).

Yet regardless of how and when I die (and I hope it is painless--that's what we all want right?) I have already made certain decisions about my death--that I want to be cremated. And I want a memorial service where people don't just wear black (autumnal colors would be nice--they are cheerful and I always liked reds, golds, and oranges--anyone who has been in my house can readily see this). But the piece that eludes me is: how will I be remembered?

Because, in general, I think most folks hope that when they die, that they will have lived a full life and full life span (again, I'd vote for over 80), that their deaths will be free of pain and suffering, and that they will be missed and remembered with fondness.

It's that last part that I wonder about. I don't mean that I don't expect to be missed or remembered. But you have to wonder: for how long? Certainly for those who know us (or knew us) and who love(d) us, we would be missed and remembered for the lifespan of those folk. But beyond that? Is this why people chase after fame--so that they will be remembered? So that they will feel like their life has meant something? So that they will feel like they accomplished something significant if their name is on a building or if they invented something useful (or even not useful) or if they published a number of books, starred in several films, earned awards and accolades.

And maybe, on a more basic level, is this why we wish to be buried in graveyards with granite grave markers--to have a permanent record of our existence. That the basic facts of our lives--our names, our birthdates, the date of our passing, will be recorded in stone as a type of remembrance that we once were here. I think about this on my morning walk since one particular 1.5 mile route takes me past the Carrboro cemetery. I always slow down when I near the cemetery so that I can read the names on the markers. I have never seen anyone visit one of the graves, and I wonder whether many of them still have family in the area or whether they are the last of their family line. I wonder whether they picked out the marker that rests above them, whether they like the quote or the lack of saying, and whether they are remembered the way they want to be remembered, even if no one comes to visit any longer. Is it enough that random walkers, like myself, read their names and briefly hold them in their thoughts?

I am not someone who is free of ego, yet I know that I don't want a marker to commemorate my life. I'm also not trying to say that those of you who want a gravestone are ego-maniacs. I just mean that for myself, I think I'm OK without any plaque or urn or permanent commemoration. I suppose it will be up to whomever survives me to decide on the ashes -- where they get scattered (I'd like at least part of me to go back to California, f.y.i.) -- but the truth is, I'll be dead so really, I won't know the difference. And I suppose if it comforts someone to put up a marker or to have an urn with my ashes, then I'd respect that, even if it isn't what I want for myself. After all, I'd be dead and wouldn't know the difference (unless any of you are still around and want to chide my survivors about not honoring my last wishes).

How I am remembered though...I suppose that's related to my previous post in terms of how I want to live my life and what makes a "good" life--because I do want to live a good life and I hope (as many of us do) that when I die, I will have people who will be sad and who will mourn my passing--and that there will be people who will remember the good things that I did--the difference that my existence has made on this planet. But beyond the people who immediately know/knew me, I think I'm OK with being part of the obscure masses of the deceased who passed through this life whom no one can recall. It just seems too much to expect that I'm going to do something so memorable and earthshattering that my name (and deeds) will live on in valor/infamy (lets hope the former--it'd be awful to be remembered for all time because I did something horrific--YIKES).

And yet...there is this video from The New York Times describing a ceremony in central Madagascar that happens every 5-7 years in various family groups wherein the dead ancestors are exhumed and hundreds of their descendants dance with their bodies and tell stories of their lives and basically pay homage and celebrate the lives that they lived.

I know it seems creepy to our 21st century U.S./Western notions of death to imagine exhuming corpses and dancing with dead bodies. But I also think that there is something marvelous in not treating death (and dead bodies) with fear and trepidation--in making death be something that is more accepted and prosaic as well as special and celebratory. In Chinese tradition there is a day during the Chinese new year (and/or there is a Spring festival/holiday) where you visit the graves of your ancestors and place their favorite dishes on their tombstones. And in Confucian tradition it is common to have an altar with a photo of the deceased along with burning incense, significant momentos from their lives, and, again, food offerings.

And despite what I just wrote above, about not wanting a grave stone and being OK with being forgotten, there is a part of me that would like to be remembered through stories, like the people of Madagascar, with dancing and celebration, and with food tributes left at an altar. Especially the food--given my obsession with food and eating, food tributes by far seem the best way I could be remembered.

Friday, September 3, 2010

Counting down the days 'til September 16

This is going to be a relatively brief post to fill you in on my chemo schedule and how I'm doing health-wise.

Yesterday I had my 3rd dose of Taxol and my 7th dose of chemo, which means I'll have my final dose of Taxol on Thursday, Sept. 16--which will also mark the end to my chemo treatments -- WOO HOO!

My white blood cell count took a bit of a plunge (3.9--normal range is 4.0-12.0) so I went in for another neulasta shot today, which should hopefully help get my numbers back up, although I'm still considered immune compromised because of the chemo. So I'm still being cautious--trying to avoid kids in childcare and college-aged kids and anyone else who may be sick--which is why I've stopped hugging and shaking hands (hope nobody takes it personally).

The odd news is that while my hemaglobin and hematacrit (RBC) counts stayed pretty much the same--right below the lowest level for normal, my platelet counts did an incredible leap from 97 2 weeks ago to 244. To give you an idea of what is normal, 150-400 is a normal platelet count range and they get nervous when you dip below 100. So it just seems odd, to me, that I jumped all the way from 97-244. Wouldn't they be suspicious if they saw you take the GRE's within 2 weeks and you elevated your verbal scores this quickly?

At any rate, I'm doing OK--I'm looking forward to being over with chemo--I'm not looking forward to the side effects from both the Taxol and Neulasta, which should hit me tomorrow afternoon and which will consist of severe joint, muscle, and bone pain. I'm also not looking forward to the double-mastectomy surgery, which should be scheduled for mid-October, with a 2-6 week healing period, but it has to be done, so I may as well get it over with. I'm trying not to think ahead to the surgery because I know it will be hard and I know I will feel freaked out--so I figure one thing at a time.

Hope all of you are healthy, happy, and well, and if you aren't any of those things, well I hope you will be healthy, happy and well soon! And for my U.S. compatriots, HAPPY LABOR DAY!