Wednesday, February 4, 2009

Poster Children

On your left is the "Poster Child" for "perfect surgeon." And on the right is the "Poster Child" for...chemotherapy. First things first (although the meetings actually occurred in reverse order), today was my post-surgery meeting with Dr. Karam. My incisions are heeling nicely and no further surgery should be necessary. The bandages are all off and one day the bruising will be gone too. He also thinks the scarring will be minimal. He was however hesitant to break it off with me entirely, and I go back to see him in April. I think that's because he wants to see what I look like bald, but hey, who doesn't? And speaking of bald, Dr. Karam and I each thought our hair was looking particularly flat in this photo. His excuse was the surgical hat he was wearing previously (not from my surgery; it seems he has other patients). My excuse was....I don't know. Bad hair day. Gotta have 'em while I can!
(That's "Bad Hare Day" again by Robert Deyber, over to the right there).

There were also parting gifts. Dr. Good Karma gave me a book written by one of his colleagues (and with a forward by Dr. Glaspy, see below). It's called "Breast Cancer: Real Questions Real Answers" by David Chan. But on the very long drive home from LA Chris and I decided they probably rejected the title "Breast Cancer: Fake Boobs Real Answers."

Prior to our meeting with Dr. Karam, we met with Dr. Glaspy today. Dr. Good Karma says that Dr. Glaspy is "the man" and his word on chemotherapy is sacrosant. I'm sure that's true, but I have to say I've been spoiled by Dr. Karam, so obviously any other doctor was going to pale in comparison. Dr. Glaspy was, um, to the point, well, no, he rambled for awhile about being on a gambling river, um, Well, okay, just lacking the finesse or charm of say, Dr. Karam. I don't know. But I had my only three mintues (during the now 7 weeks of CANCER) of thinking "I'm going to die??"

He was talking about what he does as like being on one of those casino river boats where he sort of strolls up and down figuring out the odds for people based on the particular hand they've been dealt. And my odds, he was saying, are not as good as some of the other gamblers on the boat. I was thinking 80% chance of recurrence; Chris was thinking 75%. And we were both thinking, "start the chemo now please!!" Dr. G's point was that "my" cancer may or may not have been left behind at UCLA Medical Center. And we currently do not have the technology to know for certain; they can only estimate based on statistics. So finally he gave me my odds, based on my pathology report (all about "my cancer.") There is a 30% chance of recurrence anywhere in my body. Which means a 30% chance of metastasis, which means a 30% chance of not living to collect social security. 30%, understandably, is considered unacceptable. BUT, if I do chemotherapy, that gets cut in half--15%. Oh, and my cancer is triple negative--which means there are no other treatment options that would work. No hormone receptors, no HER-2, and no something else (I think I stopped taking notes at this point), so no other treatments. This is why he called me the "poster child" for chemotherapy. There are no variables to my case that would cause oncologists to debate whether I was or was not a good candidate for chemotherapy. I am. Woo. Hoo. The chemotherapy is to give me the best chances that this doesn't come back anywhere else in my body. The radiation (after chemo) is to "save the ta-ta" only.

What he recommends is 4 chemotherapy treatments (I'll spare you the particular cocktail recipe--but it's interesting how many there are), 3 weeks apart. So 12 weeks of chemo. Which isn't all that bad. Then he says "the only side effect that is guaranteed is hair loss. You will lose your hair." He must have thought I was harboring delusions about this. I admit I had tiny, tiny hope that would not be the case. I had also heard that usually they will say "3% of women do not lose their hair" or something like that. But, nope. Guaranteed. He sort of seemed like "don't even bother me with your concerns or hopes or crazy ideas that this might not happen. It'll happen." And okay, there's a certain helpful aspect to that sort of "no bullshit" approach, but he could have at least said "I know that's tough, but it does grow back." Or, I don't know, offered up a 1% chance?? He did say that it happens about 2 weeks after the first treatment and it won't start growing back until after the last treatment. So 10 weeks (March to Mid-June) of absolute baldness (which is not a vodka, but should be) and then it will start growing again. Oh, and it might be darker and it might be curlier. I have stick straight hair (note photo!); this would be shocking! So, by the time we head to Maui for Jimmy Buffett's birthday in December, I may have like 3" of (dark curly) hair. Hats are a distinct part of my future!

So then we were shown the chemo treatment portion of the facility. Big comfy and yet scary looking recliners with a little snack bar and a few accouterments. I can bring my laptop, but can't use a cell phone. (Blogging while chemo-ing!). Then we met the nurse practitioner who manages the case and gives the chemo. I like her a lot. She gave me all the instructions (not as much as I thought) about what I can and can't do or eat or drink (wine is still okay!!) and more bad news (weight gain is normal; because you know, what's bald without fat?), and then gave me more prescriptions than I've ever had I think in my entire life combined. But the last one made me laugh. She handed me a prescription for a "cranium prosthesis." I get a new head!!!! This is apparently how insurance covers payment for a wig. Hysterical.

I am still going to get a second opinion. Not so much because I'm hoping for a different answer, but because I'd like to see if we could accomplish the same thing closer to home. As I understand it the chemo-drip day will be a pretty full day and I won't be bouncing back to work afterward. And the next day is also likely to be a "not able to work" day, but after that, Dr. G thinks I'll be fine to work. "But everybody is different." So feasibly, since it's only 4 trips to LA, we could do this. But then Chris is sort of stuck in LA waiting around with me (which he's more than willing to do) and then there's the drive home (when I might be sick). So we're going to look around and see what other options there might be. (Chime in by email or comments below if you have a good oncologist referral in the Riverside area--or closer than LA anyway). Because when we get to radiation (July), that will really need to be nearby.

Busy day, huh? Yeah, it was a lot. And Seamus spent half the day at the Riverside Humane Society (where some of the folks there volunteered to take care of him) and then went home with Destiny and Shawna because he was "highly anxious" (which is a euphemism for barking his head off and buggin' everybody else). Thanks to all who took care of him today. I guess this is finally getting to him too. He's not big on schedule changes. Now he has assumed the normal zonked out on the couch position by the fireplace. I may have to join him.


  1. Hi Teresa - you might want to talk with TC. We just met with Glasby (a Margaret T. recommendation and referral)last November. IMHO (and TC's and Margaret's), he is the best out there.

    Hair? It's a bitch to lose it. I hung onto the remote chance I wouldn't lose it and subjected myself to pure agony while it fell out. My advice - have a party and shave it off a week after your first treatment. Mine grew back straight as a string (as it was before it fell out). TC's is growing out a little nappy; we're worried... :) We took pictures yesterday, hoping this is only temporary and we'll have something to laugh about someday.

    Hang in there, Teresa. Getting ready for chemo is probably the hardest mental challenge of the whole ordeal; but it's the beginning of losing that 'out of control' feeling and replacing it with a feeling of empowerment - you're back in control of your life. My oncologist helped me put it (the fear) in perspective by asking me go home and read the little piece of paper folded up 6 times, (used to be included) listing (in fine print)all the warnings and possible side affects.

    Thinking of u, Kathy D.

  2. I need to start proofing my comments before I publish, not after! "The little piece of paper included with a bottle of aspirin"... Chemo brain is temporary. Really!! ;-0

    Kathy D.

  3. Kathy--thank you. Good advice. I want excellent health care, not excellent personality. Darn that Dr. Good Karma for spoiling me with both!

    And yes, it makes much more sense when I know you are talking about the warnings on aspirin. Before that I was thinking, why would it help to keep reminding yourself of all of the possible side effects of chemo??!!

    I hope you and TC can stop by the Post-Op/ Pre-Chem birthday bash on the 13th. It would be great to see you two survivors!

  4. Okay, so I see 2 "extra" positives as a result of the chemo. 1) no waxing this summer! 2) you said you liked my hair when it was all curly the other day--maybe you'll get my hair!

    Okay, I'm thinking maybe my comments are not helping. I AM thinking positive thoughts and sending them your way!

  5. My friend C [privacy protection] went shopping for her 'cranium prosthesis' last weekend [her chemo starts next week], and she came back with not one but THREE! seems this is the perfect opportunity for her [and, apparently, her husband] to live out some of her fantasies. her sister has already called halloween dibs on the burgundy [ok, red] one she came home with...whether C is finished with it or not! Hope you have as much fun when you shop for your 'cp.'

  6. Well, you are in the midst of the chaos, girl. Hang in there and let me repeat, everything has an ending, even cancer treatment.
    When I had cancer surgery, 1 1/2 years ago, I had a 7 hour surgery and some bad complications. My hair fell out by the handfuls, so while not completely bald, it was less then half of my former wimpy hair. They tell me it was from the drugs, surgery and stress of all that. In any case, I needed a wig for my own self image. I wound up with a cute "Tina Turner" look spike that I had fun with and people were amazed it was a wig. Purchased it at the wig store in Riverside on Arlington/Magnolia. (CAMEO).That is an education in itself, human or synthetic. Pros and cons on both. I wound up with synthetic because it is less fuss and permanently styled.
    Also, all my surgery and radiation was at Loma Linda and the radiology department there took good care of me. There is free parking for radiation people.
    another friend talks highly of a female oncologist here in Riverside, by Community Hospital. If you want more info on any of those, please let me know???
    Tough stuff but you can and will get through it with your wit and guts and drive. I know it!!!!
    Also, wanted to get a card off to you but don't have your addre3ss. Or to office? Bestest, Helga

  7. I say buy a do-rag and eye patch and you and Chris play pirate. But, then again, you know how I feel about girl stuff like wigs. And, it's good to know you're "heeling." Is Seamus as well?


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