Tuesday, April 23, 2013

Cancer Diva Adventures: Fairy Tales in the Windy City

I feel like Alice going down the rabbit hole.  "I can't go back to yesterday because I was a different person then."  Or perhaps Cinderella, and the clock is striking midnight . .  my dancing at the ball is ending.  Actually, Dorothy was always my favorite. I even played Dorothy in the 1984 USC Law School production of the "Wizard of Laws", even wrote the script with other irreverents, inspired by cheap pitchers of beer [that $1.99 Summer Special handwritten sign was posted all three years I was there . . ], cute red kitten heel pumps, and a plethora of odd professors.  I'm far from a farm girl, but I do have a cute dog and great shoes.

Can I click my heels together now and go home, away from Cancerland? 

What sort of reality am I in now, anyway?
A reality where my arm is wrapped up in bandages that look like a bad 4th grade art project. Where my wrapped arm attracts the most attention and questions: "what happened? A fight with a tiger?" "Skiing accident?" "Does the other guy look worse?" Best proposed reply:  "I'm trying out for Les Mis." Best end of evening fatigued response: "my arm does not have cancer, but the rest of me does."
"Oh." Real answer: lymphedema.  My lymph nodes under my right arm are no longer fully functioing because 11 were removed along with my lumopectomy in 2010.  Although I sincerely appreciate the caring, I am SO tired of explaining it; I feel like I must have told a thousand people already. Weirdest question this week at cocktail reception: "do you sleep in a chair? No, do you eat dinner on a freakin' bus?? 

Somewhere over the rainbow, skies are blue . . . .  and the dreams that you dare to dream . . . . .
A reality where medical leave has ended and I'm back at work. "So, all rested up?" "Good time off?" "You look great." Well, actually, a) not too bad, b) blood tranfusion last week helped, c) it's all smoke & mirrors, d) I dont know how I am, e) I'm OK, thanks, how 'bout you?

There's a land that I've heard of once in a lullaby . . . 
A reality where a medical expert at a talk last week said patients [like me] should stay on chemo forever to achieve the longest overall survival. Where I spend countless hours researching and reading and trying to understand my disease, and the more I read, the more I realize that no one knows very much yet.

Where troubles melt like lemon drops . . . .

A reality where I am in meeting after meeting by day at our international convention of thousands, and reception after reception in the evening, and don't quite feel like I fit in anywhere, even though I've done this dozens of times before. Where the peacefulness of a solo hotel room can be isolating.    Where I am flying home in a few days in time for a petscan, which will result in news of my next steps and treatment. Where  I'm meeting with a doc @ Johns Hopkins next week about potential participation in a clinical trial of a breast cancer vaccine. Where steps are to be determined and taken one at a time. Where I'm not sure what I'm doing after Friday, three days from now.

Someday I'll wish upon a star and wake up where the clouds are far behiiind meeee. . . . .

Sleeping beauty, maybe. Maybe it's all a dream. A prince will be coming to kiss me any moment now. Any day now. Really, I'm waiting.  I am hopeful. 

. . . skies are blue . . and the dreams that you dare to dream really do come true . . .

I feel different. I don't know what or how I feel. Uncertain. Foggy. Vulnerable. My mind is on the the all-cancer-all-the-time-channel. I'm a one-trick pony, at risk of being boring. Neither boring nor cancer are in my training.

If happy little bluebirds fly beyond the rainbow . . . .

There is no GPS for this stage. No mapquest. It's uncharted for me, and I'm just beginning to grasp that it is uncharted for everyone. No rule book. As much an art as a science. It's all about educated guessing.

 I want to go back. There's no place like home. There's no place like home . . . . There's no place . . .

Sunday, April 14, 2013

Cancer Diva Adventures: But Doc, How Long Do I Have?

Today (Sunday A pril 14) is my birthday! I am 57 years old. My big brother (BB) likened this birthday to ketchup, but in fact, Heinz steak sauce maintains the 57 name.  A woman I randomly met in Bloomingdales last week, who in fact runs a breast cancer center in Annapolis, said she thinks I will live for "another 57 years." "What? I didn't even tell you my age!" "Oh, that was a random # . . . you don't look 57, or even 56."   That is always the right answer.

I had a lovely birthday, despite a soft cast, of sorts,
on my right arm (to treat lymphedema) and two hospital bracelets on my left arm (for hospital outpatient blood transfusion on Monday.)

It was a glorious, bright sunny day.  My lovely daughter (LD) drove up for part of the weekend (not because of my birthday, but here nonetheless), and LD and I had brunch & much-needed manipedis.    My beautiful older sister (BOS) sent me a goodie box of some of her favorite things . . . (lotion, bath luxuries, chocolate . . ); my great in-laws (GILs) sent pretty spring flowers; BFF B left more flowers and the perfect birthday card on my porch; and I received many calls, texts, facebook messages, etc, from dear ones.  Thank you, thank you, all!!

Perfect husband (PH) grilled salmon and asparagus for dinner & I opened a 2004
Caymus cab.   . . why save it?

On the eve of my birthday (erev birthday?) I enjoyed an exceptional dinner
with one of my oldest BFFs, BB, in town with her Perfect Husband (PH) E.  By oldest here, I mean "having known the longest", as she certainly is not old.  BB is 6 days older than me, and coincidentally, my LD is 6 days older than her son (youngest of her 4 kids.).  It is so nice when life gives us those little gifts, sort of full circle.  I reportedly first
"met" BB when we were babies, being taken for walks in Cobbs Creek Park in Philly.  In 7th grade, we attended the same school, and my mother encouraged me to befriend her (even before facebook!).
But Mom, she wers a bow in her hair!"  Despite the bow setback, we became BFFs, majored in art together for awhile, and spent much time at each other's houses sketching each other, as we had no one else willing to pose.  I wont tell you what we wore, but I will tell you what we ate. At her house, the only permitted snack food was Kraft cheese that was squirted out of a can. And crackers, of course. BB brought me a squirt can of "Easy Cheese" (previously known as "Snackmate", I believe) as a birthday gift, along with a very sparkly pen, for diva writing. Thank you BFF BB!

Query: how many more birthdays like this will I have? Or, birthdays at all? I asked Dr S this very question back in December 2012, on my second visit of my second cancer diagnosis. More precisely, I said, I want to know what my life expectency is, either with treatment, or without--which I obviously wouldn't do, but am intellectually curious.  I know you probably don't like this question Dr. S, but any information from you is far better than reading junk on the Internet.  Dr S's answer was a trilogy of sorts, typically elegant, even exquisite:

1) "Without treatment: months, but not years"
2) "With treatment, years, but not decades"
3) "With treatment advances that are likely, decades."

Dr S drew these timelines on his prescription pad, and PH asked if we could keep it. Not sure where that piece of paper is now, but I liked that answer very much.  And it's not nearly as scary as it might sound at first blush.

1) It is poignant to know that my cancer is serious and aggressive enough that if it had not been "caught," I might die in a year or two. It makes me realize how fragile life can be and fortunate I am to live in the U.S. and have good healthcare.  A similarly situated woman in, for example, Haiti or Pakistan might have a much different outcome.

2) A realistic, yet optimistic view of "years, but not decades," is 19 years. I'll be 75 then. That is a respectable life span and sounds so far away, that I'm not one bit anxious about it.

3) Treatment advances are likely, in the next 5-10 years. And I've got that time. Some people don't.

Many many physicians, researchers, biopharmaceutical companies and others are working to make treatments available to patients more quickly.  Of particular note and focus is Fastercures, an organization that works to clear the path to faster development of new treatments by educating stakeholders about the barriers, and overcoming them through action.  Fastercures' Time=Lives campaign recognizes that it takes too long; costs too much; and that patients can't wait that long for relief from serious and life-threatening illnsesses. Learn more about Fastercures here http://www.fastercures.org/ 
and see patient stories (including yours truly), here.  http://timeequalslives.org/yourstories.html

More treatments and cures=more birthdays.  Everyone deserves to have a special day filled with manipedis, flowers, good wine, squirty cheese from old friends, and good wishes from loved ones.

Yours in birthday heaven,


Thursday, April 11, 2013

Cancer Diva Adventures: Blah, blaaah, blog

So . . .  my blog is on another blog (does that actually make sense?)  Living Beyond Breast Cancer is a terrific organization that I have personally worked with (many years ago in health advocacy for breast cancer patients) and more recently benefitted from--among many other things, LBBC sponsors monthly webinars--free for patients--with updates from experts on the latest medical advances and treatment of breast cancer.  Plus they're based just outside Philly, on the Main Line, a stone's throw from where I grew up (on the wrong side of those tracks.)

LBBC asked me to write something focusing on my experiences as a metastatic breast cancer patient.  This is a big topic this week because LBBC is holding its Annual Conference for Women Living with Metastatic Breast Cancer  Saturday, April 13 and Sunday, April 14 at the Loews Philadelphia Hotel.  

I was planning to attend, and am particularly interested in the session on "Metastatic Triple-Negative Breast Cancer: Treatment Options and Emerging Research", with Dr. Andrew D. Seidman from Memorial Sloan-Kettering Cancer Center.  It would also have been an opportunity to see my Big Brother (BB), who still lives in Philly (on a better side of the tracks.) Unfortunately, I cannot attend, as I actually have metastatic triple-negative breast cancer, am in serious fatigue mode, and will likely be spending Saturday at Suburban hospital getting a blood transfusion.  Oh well, maybe next year.

Anyhoo, I don't have to write so much now or think of witty things to say because I can just send you all the links to what I wrote for LBBC! Links to part 1 and part 2 are below.  Stay tuned for my exciting next post on my latest side effect!



Thank you LBBC, and thanks to all who take the time to read what I write, and to those who also write back.  I love seeing comments on my blog--so comment away!


Friday, April 5, 2013

Sharing Cancer News: Break 'm All! (first in a series)

How does one share with close friends and family the news of a cancer diagnosis?  Very carefully.

Seriously, that is one of the many challenges that accompany managing a serious disease.  You must be prepared to manage people and their reactions.  People get upset;. people don't know what to say ( I didn't used to--I'm better at it now).  I have found that I need to put the news in perspective and focus on the fact that I will be OK.  Some of the strongest reactions have come unexpectedly: my J Crew personal shopper burst into tears in the middle of the store (which actually was very sweet--she is one of my favorite people, and very ego-boosting, and I still go to J Crew as much, if not more, than I did pre-cancer.) An old friend seemed very uncomfortable with the news and has not been in contact . .  perhaps coincidence, but noticeable nonetheless. 

Perhaps my favorite raction was from BFF J 1 (note I have several BFF J's, and the #1 slot is purely alphabetical. It is captured in the brief e-mail exchange below, just after Thanksgiving of 2012, when I first told my close neighborhood friends, a pretty tight group, as we have been sharing adult beverages and related activities regularly since our kids (now college freshman) were in kindergarten. 

This exchange is well-illustrated by this life-size mosaic composed of broken dishes, called 'Broken Lady #3.  The talented and creative artist, Nancy W. Taylor, lives in Doylestown, PA. She is also my cousin, but I will not share tales of Summer camp on this post. :) 
from: SD
to: BFFs J,J,B,K,C,N & S
Hello my dear friends--
I hope everyone had a great Thanksgiving & is enjoying having the birdies back in the nest for a few days. I'm loving having my sweet girl around!

Unfortunately, I have some unpleasant health news to share. My cancer is back and has spread to various lymph nodes and soft tissue: under my right arm (where my surgery was), under my breast bone, and in my retroperitoneum(soft tissue, inside of back bone).
Possible other spots are my skull (not brain), neck (a doc just mentioned that todsy . . .?), and the left side of my jaw (much discussion/debate about that . . . . It was a dental checkup/xray led to the rest of this. Yes, proper response is "f--k."

The good news is that it is not in any vital organs (brain scan clear, nothing in liver or lungs).  I had a bone scan on wed, and a catscan biopsy combo today, to get a second read on what type of breast cancer (it's possible it changed since 2010--if  I'm really lucky it may be estrogen-receptive breast cancer, but I think odds are slim.)  I'll know more on Tuesday, whe I meet with Dr Smith & get results. Likelihood is more chemo, & other drugs.  I'm told thus far that this is not life-threatening--I could live a long time, have chemo every few years, something better may be developed, etc.

Am sorry to be sharing this on a holiday weekend, via email, but I know i'll see many if you @ B's  tomorrow & want to have fun, rather than focusing on this. Also, I have told lovely daughter (LD) (focusing on the lucky, dentist may have found this really early aspect . . )--and she may tell some of your daughters--so I dont want you to hear it third-hand.

Take care, and see you soon.

from: J
To: SD
Well that sucketh. Hugs, hugs, love
from: SD
To: J
Thx J (& all)!

And btw, I guess this is a good time to tell you that I broke one of your wine glasses at your beach house 2 weeks ago. Sorry. Don't know why I took glass out on the porch! Anyway, I purchased some sturdy plastic ones for you, to replace.

Xo, S
from: J
to: SD

Break'm all!