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,

Cdiva

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!

http://livingbeyondbc.wordpress.com/2013/04/09/what-me-cancer/


http://livingbeyondbc.wordpress.com/

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!

CDiva

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.

Xo
SD
---------------------------------------------------------------------
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!

J
-------------------------------------------------

It's My Cancer and I'll Cry if I Want To

Devoted bloggees may recall that on day one of my southwestern spa mindfulness trip, I overhead a discussion at the spa pool and realized that I wanted to cry. 

Not right at that moment, but at some point during the week. There are many kinds of crying: crying in pain, in grief, in sadness, in joy, and as a release, to name a few.  I think I wanted to cover several of those types.

On day two, I had an outdoor therapeutic deep tissue massage, which I had really been looking forward to.  My stress--like many of us--builds up in my neck, shoulders and back.  I am fortunate to have a fantastic massage therapist at home and to know what a good massage feels like. Unfortunately, this was not it.  "Deep" to me means, well, deep.  Dig into my back; find the knots; press on them; touch that pain sensation and drive it away.  For 30+ minutes of the massage, I repeatedly requested "deeper, harder, there . .  no there . . . )  It was frustrating for me and likley unpleasant for the massage therapist (MT) as well.  I had advised MT of my cancer--because the area where my port is (left chest, below collarbone and above bra line) is a no-touch zone.  The rest of me is completely touchable.  I couldn't help but wonder if she was scared to touch me harder.  Afterwards, I felt no relief; I felt like I had wasted precious time.  I was torn . .  do I say something to spa managment? complain? or just remain disappointed? I sat there in my spa robe for a bit, silent tears running down my cheeks.  I ended up talking to the spa manager.  It was all very quiet and discreet, and he offered me another massage the next day, with a super MT named L, known for her strength and deepness.  Kudos to Miraval and to the spa manager for handling this so professionally and compassionately.

MT L and I had a great session on day 3. She had already been given a heads up about my port and my desire for depth. We connected, muscularly and oherwise--a book she suggested that I read is the exact book I was already reading (for the second time actually--"When Things Fall Apart", by Pema Codron--I highly recommend it.)  My back and shoulders began to open up, and other parts seemd to follow.  MT L suggested that I try Thai massage, as that would go ever deeper into the kinks, knots, and  stored up gunk.

By day 5, my  final day at Miraval, I was relaxed and rejuvenated.  I told lovely daughter (LD) that I loved our week, in that every day I woke up happy and went to bed happy.  But some part of me still wanted more, deeper.  I still had not truly cried, and since the "Equine Experience" had not triggered tears, I wasn't expecting it at this point.  Little did I know.

I went to a session called "Mindul Stress Mastery."  That session had my name on it!  I thought it would be a lecture of sorts, e..g, "five ways to reduce stress and reach optimal health".  In fact, it was far more raw and honest.  About 10 of us sat in a circle, propped up by meditation chairs, pillows, and blankets.  Stress expert MG (SEMG) led a discussion of what we all stress about, how we deal with it, how to deal with it better.  We each revealed a  small bit about ourselves, and yes, I talked about my cancer, and how my stress emerges with small everyday occurences, often in parking garages. 

SEMG guided us into a walking meditation . . . just around the room, each at our own pace, in our own space.  I was cold and wrapped a large, soft red blanket around me as I slowly walked through the room.  I came face to face with a wall and stopped.  I started crying, still silently, but more abundantly, tears streaming down my face as I stood with my face to the wall, clutching my blanket.  I realized that what I was doing with thr blanket was hugging myself. And that what I really wanted more than anything was a huge bear-hug, from a large, protective, male human, with arms around me, assuring me nonverbally that  everythng would be OK.  And I wanted that hug without asking for it.  And I realized that I didn't know where a gentle giant hug like that might come from, or whether it would ever occur.

Then I pictured my Dad.  Dad passed away in 2004, just a few months before my Mom.  Some cousins said at the time that he was a rock in all of our lives.  Dad was also a great hugger.  I cried more silent tears as I thought about how much I miss him. 

After the walking meditation, we returned to our circle, and SEMG asked us to lie down, as she would then guide us through a body scan.  A body scan??  I smiled through my tear-stained face, and asked "will this be covered by insurance?" I remained aware as she talked us through the scan of the right leg, then left, and then I drifted off into that lovely zone between wakefulness and sleep.

My Thai massage was moments later.  I told Thai massage person M about my port, and he replied "I'm not scared of cancer."  I liked that.  He proceeded to push into my nooks and crannies with his feet, stretch my arms, legs and hips in varying directions, and generally turn me into a pool of mush.  I shed a few tears, and then I was blissfully done with my crying game.

Tearfully yours,

Cdiva 

Cancer Diva Adventures: The Dark Horse is a Winner!

I was a willing participant in the Miraval Equine Experience earlier this week, with little knowledge of the activity, except: 1) there would be no riding of the horses, 2) we would work closely with expert trainers to learn to communicate nonverbally with the horses (I did not ask if they're experts in training horses or training people), and 3) (unofficially) it can make grownups cry. All sounded good for me: I'm a city girl, with virtually no experience in riding or interacting with horses, and the crying part was calling to me. Plus, I had purchased cowgirl-ish straw hats for myself and my lovely daughter (LD) for the trip.
Our expert trainers C and K (ET C & K) were very supportive and encouraging (although I was a bit disappointed that neither resembled Robert Redford in the least.) ET C started the eight of us out with a discussion. Why are we here (can anyone say or hear that without thinking of James Stockdale?) I reported my poolside overhearing of the crying part. "Why would you want to come to an activity to cry?", ET C asked.  I chose to not reveal all, and just replied as I did by the pool, "I guess we all have something to cry about."

We divided up into pairs, each pair to choose a horse. I was immediately drawn to the brown & white painted horse, as those are the colors of my sweet pup Lulu, but others had already chosen him. This turned out to be an advantage as painted horse (ph)  (not to be confused with Perfect Husband (Ph)) was not very compliant.  Neither is Lulu, who is very anxious even aggressive with new humans, but Lulu weighs 25 lbs, not 980.

My partner K and I then went to Leo, the dark (brown) horse. We were instructed by ET C&K on how to approach our horses, where to stand to avoid being kicked, and how to squeeze a horse's lower leg to get him to lift its hoof (they are trained for that response.) We were then to hold the leg/hoof as shown/directed, and clean out each hoof with a special tool. K is a brave soul and went first, to clean the left-side hooves of Leo. It took a few tries, and some guidance ("you don't need to sweet talk him; just show him who is in charge), and then K succeeded marvelously. I was a bit of a nervous Nellie, so K & ET K turned Leo around, giving me access to his right side. My first few tries were unsuccessful. ET K said that I was not communicating clearly with Leo, as I was intermittently squeezing, then loosening my grip--so Leo wasn't sure what I wanted. Hmmm, what does that tell me about my non-horse relationships?? I tried again; Leo lifted his rear hoof a bit . . . and then started pooping. I backed away, and ET K shoveled it up. I thought this actually was a good development, as Leo likely felt better after that . . I think most beings do. I strode back over--purposefully, as the ETs had demonstrated--squeezed once; Leo lifted his leg; I grabbed/supported it; and did the pedicure thing. Success!

K and I then brushed Leo, and each took a turn walking him around the ring, Leo on the other end of a rope. It was surprisingly easy . . . he just walked along at the same pace as me.

For our next trick, the eight humans each took a turn with another brown horse named Elvis. Obviously, he must be special to have that name. Our task was to enter the ring where Elvis was unharnessed and could run free, and to use body language and a whip (to hold only, not actually whipping) to have Elvis trot around the ring at the pace we want, and then stop when we want him to.


 Brave K went first, then another Miravalite. I stood up & handed my Iphone to K, asked her to take photos, and that committed me to going next. I did not want to be first or last. I had sort of assumed Elvis wouldn't comply, but I shut out that thought, walked into the ring, picked up the whip and held it high as I swirled slowly in a circle. Elvis trotted along, so he spun a wider circle around the fence as I formed a smaller concentric circle. Nothing else, no one else existed at that moment but me and Elvis. We were in sync. Mutual respect.  I was in control but in a calm, confident way. I decided this pinnacle should be brief, and stopped at lap one. Elvis slowed down. ET K said "communicate clearly with him." I rolled my shoulders back, put down the whip, and lowered my gaze to the earth, as in a yogic namaste gesture. Elvis stopped. I think I heard a few people clap. It was magical. I was totally in the zone. It lasted less than two minutes.

ET C said that is mindfulness. ET K said she watched me transform from being anxious to being calm and in control. I said "thank you."

So, I did not shed any tears at the Miraval Equine Experience. But there is always another day.

Crying post to follow.

Yours calmly,

Cdiva

Cancer Diva Adventures: Judgment Day at the Spa

Lovely daughter (LD) and I are at Miraval outside Tucson, AZ, and it is just as wonderful as hoped: peaceful, sunny & warm, delicious healthy food,  abundant opportunites for yoga, workouts, hiking, meditation, mindfulness, massage, facials, and classes in mindfulness, minimizing stress & other ways to better oneself. In between all of that, we veg out at the pool. 

The spa pool area is generally quiet, with most patrons reading, listening to music with headphones, or dozing off, and a waiter discreetly offering frozen mint lemonades and other concoctions.  Adult beverages are available also, and one group of girlfriends seemed to be enjoying those vigorously one afternoon, leading to rather vigorous, loud, alcohol-infused conversation.  I didn't want to judge, but I admit I was annoyed by this, as I really wanted to read/doze off, and even with headphones on, I could hear every word clearly, from irritatons with their kids and husbands, to  "I'm just not a zen-type person" (in case we hadn't noticed).  I really struggled internally with my desire to tune this out, my annoyance at the loud intrusion, and my desire to not judge. I was judging them and judging myself for judging them. Arghhh! I did nothing except occasionally glance over, as if they would read my mind and quiet down.

Then an extremely loud conversation emerged and moved closer, including a woman sitting right next to me.  "I heard  they were crying!" "How ridiculous!!" "What would they be crying about??" They clearly were talking about something occurring at Miraval, and I just had to ask the woman next to me (quietly, of course) what they were talking about. "Oh, it's called the Miraval equine experience. You like train a horse or something."   I admit I then commented: "everyone probably has something to cry about. I think sometimes at a place like this you just have to suspend your disbelief."

I was immediately intrigued by the crying aspect and attracted to the activity they disdained.

Miraval equine experience, per the brochure: "an opportunity to live life in the moment . . . Work with specially selected horses . . . Expert facilitators . . . Nonverbal communication with the horse . . . Notice personal patterns that may be holding you back from the life you want to live."

I signed up.  Happening later today.  Will the horse know I have cancer and be extra gentle? Or maybe I'll get Mr. Ed?  

Naaaaaaay!

Cdiva

Cancer Diva Adventures: What comes free with cancer?

Does anything? I have wondered that for awhile.  My dear mother, when I would visit her and my Dad in Florida (that been almost 10 years . . .  ) would often offer me shoes that "come free with diabetes." [no, I'm not your size, and I wouldn't wear those beige puffy lace-up thick soled shoes if my life depended on it.] "No thanks, Mom, I'm good." Mom had worked in retail at a high-end Philadelphia department store (who else remembers Bonwit Teller?)  She loved to shop and loved a bargain.  Her typical response to, e.g, "that's a pretty blouse, Mom" was "20[%] off!", which she would say with a satisfied smile. 

Her diabetes definitely made her life a challenge in her later years, so I think the free shoes were somewhat of a consolation.  I don't recall that she got anything free for her heart disease or other debilitating conditions. It all came at a price.

I seem to have acquired some of her dedication to (or perhaps, talent in?) buying stylish attire, and similarly, am very pleased when there's a 20% off aspect.

But back to free. Just a few days ago, I saw a brochure in the chemo room @ Dr S's office from Sylene, a very nice local lingerie shop, in Chevy Chase, Maryland.  I had not noticed these brochures before, or perhaps had no reason to look at them (I already shop there)--but this time during during chemo I had a mission--scouting out potential sponsors for the Annual Living Beyond Breast Cancer (LBBC)'s Yoga on the Steps event. LBBC is a great group, devoted to providing education and suppport for breast cancer patients. And I like the name. It means even more to me now that I will always be living with breast cancer, but also want to have a broader, fuller life.  LBBC asked me to be on the planning committee this year, as I've participated in the event for its first two years in DC, and also was the top individual fundraiser both years. (Thanks again, generous friends & family, and note that I will be asking again this year! :). I agreed to be on the committee, with the caveat that I likely can't do a whole lot, as I actually have/am being treated for bc, and am currently on serious rest time. I feel bad when I can't do something someone asks me to, but I think they generally understand.

Back to free stuff. The Sylene brochure actually said "bring this in for a free bra."  Really?? Sylene is a lovely store, with attentive service and a nice selection.  Their bras are pretty pricey, and I'm sure even the little stretchy number they show would not be cheap. I read the brochure closely, lawyer-like, for exclusions. Do I really deserve this free bra? After all, I can afford to buy my own lingerie. Also, my surgery was almost three years ago, and I fortunately did not have to have a mastectomy (that might be the target audience, as Sylene offers services for women post-surgery, including prosthetics, special bras, etc.)  Well, despite these internal questions of worthiness, right after chemo, I walked to Sylene, which is conveniently just two blocks from Dr. S' office, handed them the coupon; said I just picked this up at my doctors office, and I would like my free stretchy bra.  The salespeople (two of them) looked at me kind of funny, and then showed me the selection: pink, white, and animal print. (I won't tell you which one I picked.) I felt uncomfortable, as if they thought I was scamming them somehow  . . . perhaps because  I dont look sick? It was awkward enough that I wanted to show them that I am a regular paying customer, so I bought another bra. I even asked them to look up my size, so they would see I am already a frequesnt customer.  But Mom would be proud . .  I already  had a 20% off coupon. 

It makes sense that diabetes patients would get shoes, and breast cancer patients would get bras. I googled a bit to look for more examples.  Breast cancer patients also can get free wigs if they can't afford to buy them. Parkinsons disease patients can get free information. Thats good, but not as much of a consolation somehow as free clothing.  Googling "cancer free" brought up different kinds of results.  Cancer free.  Now that would be the best gift of all.

Yours in bargain hunting,

Cdiva

P.S.  While writing this during my flight to Tucson, the flight attendant offered me a free snack box, since I had offered to change seats to allow another passenger to sit with her family.  I accepted it.