Friday, February 26, 2010

Turns out, tumors make you tired. I don't remember this feeling from the first go round with Breast Cancer. But the bottom line is it's all I can do to make it to the gym, put in a half-assed workout, take care of Wally and myself. I am sooooooooooo tired.

So much shit has gone down since I last blogged. I told you about the bone scan results. Well, Monday I had a CT scan, which I've never had. I picked up the results/report on the Bone and CT scans on Tuesday to send to Norton at Sloan. I've decided that the protocol this time will go from Norton down to Schwartz as opposed to Schwartz calling Norton, telling him his theory on treatment and Norton yay or naying it.

Well, if you had your own bone scan report, would you be able to resist reading it? I couldn't. So I sat in the hall of Sinai and read. My fatalistic interpretation—even my vocabulary and knowledge of Latin roots proved totally fruitless—was that I had mets to the liver and lungs. A new small tumor in my left armpit, and major growth on the ones already there—sternum, neck, clavicle etc. I was just numb. No bad news surprises me anymore. I'd already secured a spot with Norton. (I'm flying up the 8th, spending the night and flying out the evening of the 9th).

I still have some residual anger at Schwartz for taking me off the Xeloda. Maybe it wouldn't have spread so quickly then. But, whatevs. That was Monday. Tuesday, I spoke with Norton's nurse Karen, who, in my opinion is the most knowledgeable nurse I've worked with. I had her translate the report for me line by line.

No, there was no lung mets; yes there are spots on the liver, but very minute. They hadn't shown up on the PET a month prior. The spot on the lung the report indicated is likely the tumor on the left rib, pushing up against the lung or something thus causing my shortness of breath. Thursday I saw Schwartz, armed with the report and notes.

"So I got my report, faxed it to Norton and had his nurse translate it."


I felt a little bad, so my eyes were affixed on his Hermes tie. I love Hermes ties.

"So I spoke to Norton and it turns out he recommended the exact course that I was thinking."

Carboplatin, Gemcitabine and Avastin. The first two are chemos; Avastin is an anti-body blocker. No idea what these fuckin' blockers do.

Dana did some research on the hair loss issue; the lower the dose, the less chance of loss. If you lose it you lose a little at a time, nothing like last time's. I can't wrap my head around what that will look like or mean. Will my horse's main turn into gross, stringy, thin hair? So I asked Schwartz to please start me on lower dosages of Carbo and Gem. I'm not sure which dosage corresponds to which. But since I'm young and 'healthy,' Schwartz had me on the highest dosages of everything before. Well, it's been almost three years and my body has been to hell and back, so he was fine with that.

I'm not getting another port. Schwartz says that as long as they can find a vein, this cocktail is not that hard on them. I will double-check that with the nursing staff.

"Well, okay then. Do you think that since I have such thick hair that will help?"

"I think it will."

"Okay. I'm going out to buy the horse shampoo now."

"I think that should help too."

I went to Sally and bought the Mane 'n Tail Shampoo, conditioner and spray thickener. It smells like ass; it's no Oribe. Speaking of whom, I want to get a dead-end trim, but can't cough up $400 with that. And you all know I'm not trusting anyone else with my hair in Miami.

Oh, I also have to have Xomeda, which is a bone strengthener a la Boniva, or in Schwartz' words, "You know those commercials Sally Field is in."

Uh, yeah. Anyway, the reason my case is once again so fucking unusual is that even though I'm HER2NU+, my tumors are behaving like triple negatives.

So, I will begin Monday. Go to Norton March 9 for a consult/convo (one night at the Waldorf at least), then chemo #2 on the 10th. It's two weeks in a row, one week off. Eight in total. Two and a half mos, thus ending in May. Assuming it works. Though I'm not assuming shit anymore. It's not any fun this time. I have no desire to go to Neiman's, though the offers are a plenty. I'm SO FUCKING TIRED. I got a Tempurpedic bed and oh my god, you would not believe what a miracle worker this bed is. I slept 12 hours last night.

Chad prepped my whole body yesterday, and told me it's important to exercise this weekend—makes your veins pop—and carbo load on whole grains. My diet is so beyond boring. Even now I have to go to the gym and hate it. I can do about 1/2 of what I usually could do. Forty five minutes of cardio is a miracle.

I'm soooooo tired and I hate it. I've never been affected by a lack of energy. Fucking tumors. Anyway, that's the update. Why can't they come up with an IV form of caffeine????

Friday, February 19, 2010

Sorry, no news ain't good news in this case. Bone scan revealed two new spots on bone—one on rib, which explains labored breathing—one in middle of back and then the one that the PET revealed on the hip.

Likely—if the tumor marker count is over 300, we are waiting on the call—will now have to go on Carboplatin chemo. Schwartz says—though we all know nurses know side-effects btr than docs—most people don't lose hair. I'm buying some Mane 'n' Tail today. Two and 1/2 months of treatments. Seriously, my life fucking sucks shit ass. Mom, Dad, Stella, Tessie and Wally drove in this a.m. and now we're just waiting by the phone.

For those of you who want daily updates, you need to look at my Facebook page. I think it's private so you'll have to add me as a friend. I'm not going to be blogging so regularly. I'm just SO fucking exhausted all the time.

Tuesday, February 09, 2010

Finally, Good News (or at least not bad news)

Hey bitches! Yesterday's report from Schwartz was pretty, pretty, pretty good'—the nodes have all either shrunk or held steady. (The most important thing is that no NEW nodes have formed.)

Schwartz happy with progress. Looking ahead though, he gave me 'homework'. As soon as I was re-diagnosed. Schwartz took it upon himself to research PARP inhibitor clinical trials for me and had no luck in Florida. So I'm now looking into that. I'm hoping to score one in Europe and get a vacay out of it.

Worse to worse (also looking ahead) IF (please no!!) I had to get chemo again, it would be Carbo Platinum and it does not induce hair loss [in most people; hopefully JewFro will help keep the follicle loss from happening.

On hold with the fucking answering service even though I was told to call at 5:15!!! Motherfuckers!

Sunday, February 07, 2010

Random Thoughts by Stephanie Green

1. The Ritz-Carlton chain needs to make up its mind whether it likes dogs or not. Mom, Dad and I had to Anne-Frank Wally into the Orlando property today. (Yeah, I drove seven hours roundtrip today to deliver my baby to Mom and Dad, who were in ORL for a legal conference. So that he could stay with them for the four days I'll be in NY. Psycho dog mommy. Oddly enough, Mom bought me several pairs of Hanky Pankys. Odd because I found myself thinking the other day: 'Hmmm Chad must really think my underwear is getting ratty. Must get more.' Yup, Acupuncturist is the only straight male who see's my undies nowadays.

2. Memo to tourists visiting Miami: Just because you are in Miami, does NOT mean it's okay to carry spring/summer handbags. It's fucking February and it's in the 50s here. Simply unacceptable.

3. I loathe tourists. I really do.

4. No, I'm not at the Super Bowl. If I were, I'd be too paranoid about being a captive audience for terrorists. I don't even think I'd have gone if I'd been invited to someone's box. Ooh, that sounded dirty.

5. Wally is pooping in the house again. Thus, this a.m. I awoke to shit all over my yoga mat. My specially-ordered one. Not to mention several ancillary shit spatterings in the living room.

6. I'm so bad at eBay, that I accidentally sold that Dior bag for $200 via a "Last Chance Offer." I've chosen to think of it as a fashion mitzvah and let it go.

7. Friday I took my mentor Gary—editor in chief of ESPN magazine—shopping at Target. My first male personal shopping excursion. He bought me a flat iron. It was just as much fun as Bergdorf's, cause he's just that fun. Moreover, I can't imagine that him pleasantly shouting across the store, making conversation with strangers would've gone over that well at Bergdorf. Gary has the immense privilege of being the first reader of Cancer Is the New Black.

Speaking of whom, shameless plug for Gary's recently reissued book: Why Smart People Make Big Money Mistakes. I'm totally going to read this one; "Big Money Mistakes" could be my first name.

8. My back still hurts. My clavicle/sternum hurts. I had two acupuncture sessions and a massage at Equinox this week and I'm still in pain. I have plenty of Vicodin, but I hate how it makes breathing labored. Haven't done yoga in weeks.

9. I have no appetite without weed. I cannot smoke weed. Therefore, today I've eaten: a banana, most of a mediocre veggie sandwich from the aforementioned Ritz and part of a fruit salad, which I'm nibbling on now just to have something in my body. But seriously no appetite. I may actually have to start taking Marinol. Oh, how the mighty have fallen.

10. Tomorrow is Herceptin number two out of three (then the PET to see if it's working.) Will the painful side-effects get worse cumulatively or will my body acclimate? Who the fuck knows. I cannot deal with this waiting. I scheduled a bone scan on Wednesday just for my own information. That suspicious spot on my hip that showed up in the PET—well, I wanna know exactly what it is, measurements etc. Not to mention I want to know what other bones have lesions. Will I even want to get the results before I leave for NY Thursday, or shall I wait till I get back, so that if it's bad news it won't ruin my trip.

11. Cancer sucks even worse the second time around. I'm becoming fatalistic again. How can I not be? I've considered drafting a will, but I (seriously) cannot work out who would get my jewelry. Dana would be the obvious choice, but she can't even keep track of her keys. My shoes would go to Mom; clothes I don't know. A free-for-all amongst my NY girlfriends probably.

12. I have no idea who the fuck TPain (sp) is and I don't care. Moreover, I have no idea who Little Wayne (sp) is or what he has done to earn himself a spot in the "We Are the World" remake.

14. OMG, just switched back to the Super Bowl and the Saints are winning. Fierce! That city deserves something.

Thursday, February 04, 2010

Wow. Happy February; can't believe I haven't written. My back has been seriously fucked up. Over the weekend I bent the wrong way and what had been centralized as upper back pain, traveled down to my lower back. Thus semi-immobilizing me. I was freaking the fuck out on Friday because of the pain, thinking 'Oh, fuck, what if it's new Cancer growth and that's the pain?'

Then a nurse assigned to my case from Humana called; started describing the side effects to her—all of them are a result of adjusting to Herceptin. I'm still on Vicodin and sleep isn't fun, which is why I'm awake at this normal-people hour. We are all hoping that my bod adjusts to these side-effects before Monday, when my next Herceptin infusion is. I leave for NY Thursday, so even if I have to go see Chad three days in a row, I *will* be back pain free for Fashion week(end).

So when I went to Chad on Tuesday, he needled the fuck out of me. He put a THREE INCH long needle in my hip. Seriously, I saw it—he's never needed a needle that long on me. (And no, it doesn't hurt.)

Saturday night I've got to drive to meet my folks in Orlando, who are there for a legal conf, and smuggle Wally into the Ritz-Carlton so that he can go home to Jax with them on Sunday and stay while I'm in NY. You know, hoteliers—my life (and lots of other dog-owners' lives) would be a hell of a lot easier if small dogs were always allowed. Even for a fee. So annoying.

Schwartz didn't like hearing that I was in such pain that I needed more Vicodin—"He doesn't like hearing that you are in pain," said Juanita, one of his nurses. "Oh no, it's fine. I can deal. My body will adjust."

Because I know what Schwartz is thinking (compassionately): If she's in this much pain, maybe it's not the right treatment. Well, note to all: I'd rather be writhing in pain than lose my hair again. I can work through the pain. I can treat it with acupuncture and stretching and pills. I can NOT work through hair loss again. No, no no. Speaking of which, I was supposedly on Oribe's "list" for January and never heard from them. The hair is growing in shapely, but since I haven't had it trimmed since August, I may get a dead-end trim in NY. Though I am loathe to have anyone else's scissors in my hair.

So today I've got a Qi Gong/Tuina massage with Chad, which, if you are a massage head, is the most relaxing massage technique ever. And if you're in NYC, you'll see a million Chinese massage parlors advertising it on their shopfronts. I'm not sure which of those places are happy-ending free, but it's worth looking into. (If you are really interested in exploring acupuncture and Asian massage, check out the Pacific College of Oriental Medicine, which Chad recs.) It's really reasonably priced; maybe I should schedule something in NY just in case. After my flight perhaps.

Anyway, that's about it. Almost halfway through editing Cancer Is the New Black, so will have it in hand for New York and my readers there. The funniest parts so far are the dialogue that Manny transcribed from our videotapes. Especially Dana's bits—her kids are going to read this in 10 years and realize what a potty mouth their mommy has. Kobi's definitely gonna learn some new curse words from Auntie Stephie.