Thursday, September 19, 2013

Cancer Diva fans:  Perfect husband here with a sad update regarding Cancer Diva's blogs.  As some of you have noted, Diva has not posted in awhile, and there's a reason for this.  On August 22nd, Diva and I learned she had cancer in her spinal fluid.  We were at Johns Hopkins, in the good care of the medical staff of the nation's top doc hospital.  What could go wrong?  Plenty.

Diva stayed that night, a Thursday, at Hopkins, and we came home for the weekend the next day.  Finding cancer in the spinal fluid, a rare and hard-to-treat cancer, included the news that Diva could not continue in the drug trial she was so enthusiastic about.  We were also told Diva might live about a year.

Early the next week, Diva was getting treatments at our local hospital when an oncologist, and friend to Diva, informed her that most patients with this kind of cancer normally live 2-3 months.  Bad news, but still some time to plan, have a party, play favorite Diva music, etc.  Also, Diva had some complications with sodium levels and blood pressure, so she was admitted to our go-to hospital that day. 

As the week progressed Diva was not improving, despite radiation treatments, lots of meds, etc.  Her regular oncologist advised, privately, that she may live 3-5 weeks.  This got everyone's attention.  Suddenly the year-long timeline was shortened considerably, and unfairly, I'd say.  Diva also continued to suffer pain, dizziness, etc.  Still, no radiation treatments are given over the weekend, and it was now Labor Day weekend, so she came home again.  Why stay in the hospital if they're not treating you?

A looong weekend is a good way to describe how we all felt as the days passed.  Diva was in constant pain, needed ice packs non stop, and was having trouble walking.  Back to the hospital we went Monday night, courtesy of an intervention by a good friend from work who cornered yet another oncologist familiar with Diva's case.  She was admitted on the spot, and never left for over a week.

Diva continued to struggle with radiation treatments, slow-arriving meds, and just plain bad luck.  At one point she fell when she got up in the middle of the night.  A nurse found her and a battery of tests were performed to see what internal damage, if any, occurred.  Thankfully none, but the CT scan revealed that the radiation was NOT having any effect on the cancer nor the pressure that was building in her brain.  I was also advised Diva might live 2-5 days.

Another frustrating weekend passed, and the doctor's recommendation was made, with my reluctant concurrence, that Diva should go into hospice care.  I was going to take care of her at home, but then it became clear she was too sick for even that.  Last week she was transferred to an in-patient hospice facility here in Washington, and she lived for another 9 days.  She died peacefully and without apparent pain yesterday, September 18, at 2:50 in the afternoon.  I was with her, as well as another family member.

Diva was a fighter, but this was a cancer that'd gone too far.  Her body could not overcome the pernicious and rapidly escalating effects of the spinal fluid cancer.  She lived a good life, full of cheer, energy and optimism.  She will be missed by many, including you and me. 

Monday, July 15, 2013

Adventures of a Cancer Diva: Arm Fashion with LympheDIVAs!

Being a breast cancer patient and a fashionista simultaneously can be challenging.  The hurdles are often different than one anticipates--not just baldness, scarves and wigs--but can include the need to hide funny bumps from scar tissue, avoid irritating fabrics during radiation, minimize port exposure, and wear larger or more forgiving clothes due to weight gain from steroids, (no, not all cancer patients lose weight; in fact many breast cancer patients gain it). 

One unexpected challenge for me is lymphedema.  Lymphedema affects a variety of patients--cancer and otherwise--and many breast cancer patients develop this chronic condition at some point.  Lymphedema is swelling in the arms or legs caused by an ineffective lymphatic system.  The lymphatic system is a network of tissues and vessels throughout the body that aborbs excess fluid and filters out toxins.  The name comes from "lympha", Greek for water goddess.  (I like that--"Goddess" may be even better than "Diva", although I think one should not self-anoint as a "Goddess." )  Lymphedema is often caused by lymph node removal as part of cancer surgery or radiation to the armpit area.  In my case, when the surgeon removed the cancerous lump from my right breast, she also removed 11 lymph nodes from under my right arm, three of which also contained cancer cells.  I avoided any lymphatic symptoms for three years, and then--voila! A lightweight cashmere sweater (yes, from J. Crew) felt a little tight on my right arm, and then a new wrap bracelet (a Chan Luu that I had been lusting after and finally splurged on)
would only wrap four times around my wrist, rather than five. These fashion clues led to the medical conclusion that I had some, albeit minimal, lymphedema.  There is no established cure, although I have heard about surgery to move other functioning lymph nodes to the problem area.  I'm filing that information away for later--right now I have bigger medical fish to fry.

I was actually quite distraught when my lymphedema arose.  (No pun intended, but Big Brother (BB) totally intended a pun when he said he always thought I was  "swell".)  It does not hurt or affect my activites very much, but heat is a risk factor, so my beloved hot yoga and occasional jacuzzis are off-limits for now.  More distressing is just the fact that a body part if mine is no longer functioing as it should. 

Lymphedema can be managed through various types of lympatic massage and pumps, and most often requires wearing a compression sleeve to keep the condition from getting worse.  A sleeve can also be used prophylatically, particularly for air travel.  I had a plain old beige sleeve for prevention, and then a new one (yes, folks--they do not last forever--to be effective, a new one may be necessary every six months or so).  It was fine, but I can't say I loved it. 

And then, while looking at the website for supporters/sponsors of Living Beyond Breast Cancer's Yoga on the Steps Event, I saw the company name: LympheDIVAs.  What?? A breast cancer diva thing that I had not yet heard of?? Diva for a Diva? It was almost too good to be true. I went to their website:  and (encore voila): dozens of compression sleeves with beautiful designs--flowers and animal prints and tattoo-like, oh my! What a wonderful concept! and who would've thought of this other than another breast cancer patient/fashionista, right?
LympheDIVAs was in fact founded by Rachel Levin Troxell a young breast cancer patient who had lymphedema.  Rachel had a recurrence and passed away, tragically, at the age of 38.  Her family has continued LympheDIVAs as a tribute to Rachel's beauty, strength and confidence. 

LympheDIVAs was kind enough to provide me with a complimentary (as in free) sleeve, so I could wear it for the LBBC event and also so I could write about it on this blog.  Yay!! My first ever free blogger swag! FULL DISCLOSURE per Federal Trade Commission Guidelines: I was provided with a flowered compression sleeve by LympheDivas.  I am now writing about same sleeve. 

Conclusion/review: I love it! It feels good (very flexible, soft fabric) and looks fantastic.

 I can and do wear it for many activities: working out (when I must wear it), weight training or yoga . . .

At work,  contemplating a deep issue and trying to think of a strategy that no one has ever thought of before . . .

even out on the town!
I get many many compliments about my sleeve, eg, "(wow, that's cool!' "where did you get that?", "new fashion trend?" Even better, some people think I have my arm beautifully tattooed, which I do not, and probably will not (again, bigger fish to fry, and tattooing a lympedema'd arm is probably contraindicated.  Plus, imagine the horror of, for example a small rosebud tat looking like a man-eating flower if my lymphedema got worse and my arm swelled up hugely!).  Any-hoo, the compliments are much nicer to hear than what I heard with my  plain sleeve, eg, "tennis elbow?" "hurt yer arm"?

I love my lympheDivas sleeve and am already planning what my next one will be.  After all, flowers don't match everything, and are kindof Summery .  . . I think a new design is a must for the Fall, dont you? I'm almost tempted to get one for my healthy arm, but . . . naah.  The asymmetirical look is cool.

Thank you LympheDIVAs.  Thank you Rachel and the Levin family.

Yours in bc fashion,


Friday, June 28, 2013

Cancer Diva Adventures: What Goes Down Must Come Up . . .

As in mood.  As in functionality.  Sometimes you're down, but you just gotta get back up.

Tuesday was day 10 of of the "interventions" (i.e. injecting substances into and removing substances from my body)  in cycle one of  the Johns Hopkins (JH) clinical trial that I am participating in ("my" clinical trial).  It began well enough (as in, I woke up,--always a good start); got out of bed within minutes of my alarm going off and before Perfect Husband (Ph) had to harass me into waking up (a chore that I request of him); there was no flooding or power loss chez nous; and the front page of the Washington post was not horribly deptressing.   I even left the house before 9 am, a somewhat heroic feat for me.  Angel Clinical Trial Nurse M (AM) had advised that I really really needed to arrive by 10 am and, having often (always?) been late,  I really really did not want to disappoint her or screw up the schedule.  AM is a major positive force in my life these days and an all -around hardworking, calm, efficient and caring person. 

I decided to drive to Hopkins myself--which should be just fine, right?  I know how to drive; have a GPS; and am not overly fatigued.  Last week, beautiful older sister (BOS) visited and went to JH with me every day, which was fantastic.  Ph offered to accompany me, but really wanted to attend a meeting on Capitol Hill, and I agreed that he should do that.  And yes--I have outstanding (as in good, as well as not yet accepted) offers to drive/go with me . .  I know, I know, cousin M, friends C and J, neighbor B, I could have called you . .  but I really thought this would be fine.  Not a big deal.  (Note: I have since arranged with cuz M to accompany me to my next JH appointment & lunch!)

I cruised north on I-95, sipping coffee and switching between NPR reports on SCOTUS decisions and the XM radio Spectrum station (my car was still in neverending body shop mode from car chase/collision & Ph let me use his car, which has XM :).  Plenty of time I had.  Then I hit downtown Baltimore and traffic.  9:40 became 9:45, 9:55 . .  I could sense that upon arrival and taking of my vital signs, my blood pressure (normally so low that I'm prone to passing out) would be above normal.  Damn.  Drove into parking garage.  Handicapped spaces, radiation oncology spaces, pickup of discharged patient spaces, no Cancer Diva spaces.  I finally squeezed Ph's SUV  into a space and raced through the garage, through the lobby, darting around people in wheelchairs and with walkers;
scanned my orange JH patient card at reception; scanned in at oncology (I may be the fastest ever patient between those two scanning places); ran past rows of waiting patients; checked in at the phlebotomy (aka the drawing blood, bloodletting, venipuncture) desk.  It was 10:05.  I stood, paced. AM popped her head out and said "oh, we're running behind; everyone was late today because of the traffic."  Oh. Well, I'm really glad I'm not late.

Then I realized I forgot my water bottle; left it in the car.
Then I got called in to have my port accessed and blood taken and the phelobotomist person (PP) asked me what kind of port I have.  Damn. I have been asked this question at least six times in the past 10 days, because my Sibley Hospital (surgically)-installed-port is a different type than they insert at Hopkins, and I keep forgetting to find the port "card", that I apparently should carry with me at all times.
Then I realize that I forgot to put lidocaine on my port in advance, to prevent minimize the pain of the needle stick.
Then the needle stick didn't actually hurt so much, but I quietly began to cry anyway, because I felt alone with no one there to get me a water or to have reminded me about the lidocaine. The needle stick didn't hurt at the skin level, but it did hurt more deeply.  I know that there are many people in the world that love me, but none of them were right there with me at that moment. BOS would've remembered all of that, and been sitting there using her own needles.
I realized how much I missed her. 

I felt a bit embarassed to be 57 years old and crying in public for something that was not physically painful, but they were quiet, minimal tears.  It is likely that no one except PP noticed, and she seemed very nonjudgmental.

Then, enough.  It was time to pull myself together.  Things started looking up.  AM arrived to shuffle me to the next procedure, and she and "Robert" ( his real name, and I don't know his title) informed me that oncology patients actually can use the valet parking service for freeFREE!? Ding! Now we're back to Diva territory!  

I brightened up and chattered AM's ear off as she checked and measured all 12 vaccine injection sites, asked about side effects, checked my Vaccine Symptom Worksheet (VSW),
and took (yet another) skin biopsy (briefly painful).  I shut up for a bit while I listened in to a conference call (mostly on mute, so no one would hear my "OWWW!" during the skin biopsy.)

Before heading home, I decided to get a latte at "Grand Grounds"
(get it?) just off of the cancer center lobby, right next to the meditation room.  Meditation room??
Yes, BOS and I found it on Saturday; spent some quiet time there, and I promised myself I would try to find time to meditate every time I visit JH. It is a lovely small room with stained glass windows, about 10 chairs, and an array of books and paraphernalia for virtually every religion one can think of.  I chose a non-religion--transcendental meditation (TM, not to be confused with trademark)--which I learned in April, with wonderful teacher JG, but during a very stressful week.  I have not maintained my meditation practice, but why wait? Just do it, right?  Twenty minutes of silent meditation later, I felt much more peaceful; purchased my caramel soy latte (no, I was not peaceful enough to skip the latte) and was ready to hit the road, back to DC.

The road is long . .  there are mountains in our way . .  but we climb a step every day . . .

Love lift us up where we belong . .   where the eagles cry, on a mountain high . . . .

Joe Cocker, circa 1070s

Yours, lifted up and back in DC,


Cancer Diva Adventures: Let It Flow

As Eric Clapton sings--

Let it grow, let it grow  . . .let it blossom, let it flow  . . . in the sun, the rain, the snow  . . .love is lovely . . .  let it grow . . .

Let me now analyze this.

Flowing can be good.  Love flows, yoga flows, music flows, skirts flow in the breeze . .  (unless, of course, they are J Crew pencil skirts, which are straight and not intended to flow.)  Water flows, and can be calming and beautiful or exciting and dangerous.

Fallingwater, June 1988
The very weekend Perfect Husband (Ph) and I met, in June 1988, included white water rafting on the Upper Youghiogheny River in Pennsylvania (Upper Yough, pronouced "Yak")  as well as a visit to Frank Llloyd Wright's Fallingwater.

Ph, lovely baby daughter, CDiva, 1994
It was perhaps a rebound relationship for me--we met within days of a sad final breakup with my final last boyfriend before marriage (FLBBM)--and things began to flow. Thus far, my rebound has lasted 25 years.
Sometimes couples get closer when dealing with a traumatic event, like cancer. Sometimes they don't.

An overflow can be a fiasco, even disastrous.  Think Hurricane Sandy.  That combined with Sandy Hook, as well as my own Sandi Cancer recurrence made me think that Sand(y)(i) was a doomed name last year, a perfect storm of aggression, grit, and Sandiness.

Growing is good: for children, for plants, for minds, but NOT for cancer.  Perfect Husband (Ph) has often used the phrase "It'll grow back", in response to various bumps and bruises and ouchies, both in lovely daughter (LD)'s chlldhood playing days, and in my continuing less than graceful bumping into things, often combined with an exclamation of an expletive.  Ph never ever said that about my cancer, but in fact, it did grow.  

Back to love.  It has been flowing and surrounding me of late in so many ways, from my cousins, friends, neighbors, and especially, my siblings (pictured here, in 1960, I am the baby),

North Carolina:  Just before the start of my participation in the JH a clinical trial last week, Big Brother (BB) accompanied me on a road rip to Chapel Hill for an appointment with uber breast cancer doctor C (UBC).  This was essentially for a second opinion on which path to take--I had scheduled the appointment before my clinical trial acceptance at JH. 

The trip was worthwhile, in that UBC confirmed that the treatment path I'm on is a good one and that I'm not missing anything.  Whew.  She recommended a possible course of treatment for after the clinical trial ends.  I also queried as to what would happen if the 20% (of my original cancer that is still with me) does not disappear, and she said that if the cancer does not progress, I could be just fine.  I could walk around with that amount of cancer in me forever (well, my version of forever).  I am asymptomatic (except for lymphedema in my arm) and the cancer is not in any vital organs.  What we must avert is progression.  Wow.  Good to knowI'm sure Dr S could have told me this; I just never asked. 

In addition to getting sage advice from one of the top breast cancer docs in the country (also an expert in triple negative breast cancer, the aggressive kind that I have), the road trip with BB was fun.  We talked nonstop for most of the five-hour drive south.  We had a very nice dinner on the main drag in Chapel Hill, and found a cozy local pizza place to wait out the storm/tornado on the way home (no power, but pizza oven was still hot!) ADD PIC  Perhaps my favorite moment though was when I was driving while listening to a conference call (yes, safety experts, on speaker phone) and BB took notes for me. The guy who teased me from birth through age 12, then pretty much ignored me for a few decades was now my personal assistant!  :)

Silver Spring:  BFF D and I had not spent time together in many moons, but she had recently emailed:  "Love you.  Pool is open for your leisure.  Heart is open for whatever you need. XXO".  On the weekend just before the clinical trial, we got together for an evening where the prosecco and wine flowed freely, and then for a swim in her pool the next day--something I will not be able to indulge in for awhile, as swimming, baths, hot tubs, any water immersion is off-limts for much of the clinical trial. 

  Beautiful Older Sister (BOS) flew up and stayed with me for my first week in the clinical trial.  BOS was caring and attentive and anxious to fulfill my every need.  We stayed at a cute hotel the first night (yes, with special Hopkins patient rate!  Another Diva deal!) and during breakfast in the courtyard we watched a Mama duck attempt to keep a watch on eight little two-week old ducklings.

BOS was essentially a Mama Duck to me all week, and while I enjoyed most of it, I did tell her that I am not fragile, and that at my house (or anywhere) she does not have to jump up constantly to ask: "Are you thirsty do you want water are you cold do you want a blanket are you hot do we need to rub some cream on those spots do you want me to change the bandages . .  ."  Fortunately, she laughed at my teasing, and even at my warning that Mama Duck could turn into Motherducker.  BOS and I had our fill of crabcakes, fish tacos, pancakes & omelettes (no, not all in one meal!) at various Fells Point taverns and diners, including a lovely lunch with cousins S & P.  (not to be confused with the financial index). 

DC: Back in DC, we had an extraordinary celebratory dinner with cousins M, J & J.  This was the night of the 12 vaccine injections, and Angel Clinical trial Nurse M (AM) had warned that i might not feel so good.  I was not worried one bit--as both Js are MDs; M is a nurse; and BOS is a Mama duck.  One J traveled  down from NYC and the other traveled up from Virgina Beach. 

We were five Moskowitz girls, reminiscent of the five Moskowitz sisters--one was my Mom; one was the Mom of M & J.  The NY cuz J is more distant in the family tree . . .  her great garndmother was my grandfather's sister, or something like that.  Despite the distancwe on the family tree, in real life we are intertwined.  In honor of the Hungarian family connection, I brought BOS and each cuz a bottle of my favorite nail polish of this season OPI "You're Such a BudaPest",

from the Eastern European collection, of course.  The wine (and vodka) again flowed; the trendy upscale Indian food was delicious, and I loved being with my girl cousins.  I had also requested a round table, as BOS recalled that the five Moskowitz sisters at times had lunch togheter in the Crystal tea Room at Wannamker's Depasrtment Store in Philadelphia.  BOS once joined them--qnd either for lack of room, or non-sister status, she had to sit slightly outside of the sister circle.  They were tough women, those Moskowitz sisters.  Our boy cousins tell us that none of them was ever brave enough to cross them.

After days of much love, BOS ran upstairs one morning to tell me that the handle broke off of the guest room (ok, it's actually the basement/former nanny suite) shower and the water was overflowing. 

BOS (aka Mama duck) bailed shower water in buckets into the sink while I did my best to call Ph, have him paged, and ask where a turnoff valve might be located.  Ph dashed home and arrived just after I found the valve and stopped the flow.  Too much water can definitely be problematic.

I ask you, my friends:  is there ever too much love?

Let it flow, let it flow  . . . in the sun, the rain, the snow  . . .love is lovely . . .



Thursday, June 20, 2013

Cancer Diva Adventures: I am Someone's Science Project

Years ago, I developed a friendship with a guy who was intrigued by me.  Granted, we were mutually  smitten, but he had a high level of curiousity about me and my life--he inspected details of my living quarters and activities, asked probing questions, and analyzed the available data.  One evening, over wine at the bar of a fine dining establishment, his questions and assessments of me led me to exclaim rather loudly, much to the amusement of the bartender and other patrons, "I am NOT your little science project!" For better or worse, the escapade fizzled before much more probing or anything that might have resembled a normal relationship.

Now, again, I find myself as someone's science project, again having myself questioned, probed and evaluated, but in a  a much more formal situation.  I have entered clinical trial-land.  I am not just a patient, but a subject.  BFF D suggested that perhaps I am now a "trial"  lawyer.  Hmmmm . . . .

This trial (unlike a flight of fancy that might lead to a bit of joyfulness) could lead to a significant advance in the treatment of breast cancer--not just for me, but for many other women.  This is far more important than my own personal happiness--it is a matter of public health with far reaching ramifications.  I am excited and delighted to be a part of it (even though it does not come with free drinks or backrubs.) It is one step in my path of lifelong cancer treatment.  It is not intended to get rid of the 20ish % of cancer that still remains in my body (although some regression is possible).  It is intended and hoped that it will slow progression of my cancer and make future treatments more effective.  This could be a beautifukl thing.

The trial, being conducted at Johns Hopkins Sidney Kimmel Comprehensive Center (JH) is of a breast cancer vaccine, specifically, "Cyclophosphamide and Vaccine Therapy With or Without Trastuzumab in Treating Patients With Metastatic Breast Cancer."  Got that, right?  The trial is still open and looking to enroll more patients.  Basic criteria: Must have metastatic HER2 negative breast cancer.  Must not have autoimmmune disease.  Must not have chemotherapy within 28 days of the study.  Patients wanted!! In all seriousness, if you might be eligible, or know someone else who might be, call JH or contact me and I'll make the connection.  

So here's the deal, in basic non-scientific terms.  This is a research study, meaning the vaccine has not yet been approved by FDA, and is only available to a limited number of patients--me and 39 others, thus far, in a very highly selective eligibility process (e.g., if the selection were based on academic criteria, I likely would never get in!) Studies like this can provide the basis for a new treatment to eventually be approved by FDA and become widely available if the data are sufficiently robust.  

The vaccine (aka immunotherapy) is intended to arouse my immune system and feed it with information along the lines of "breast cancer cells are bad.  Destroy them.  Breast cancer cells are bad,.  Destroy them.  Repeat after me--breast cancer cells are bad . . ."  See, our immune systems don't consistently recognize cancer cells as bad, because they grow from within our own bodies, and are not viewed as foreign.  (wow, this almost sounds politically incorrect . . foreign=bad.).  The vaccine, manufactured at JH, is composed of breast cancer cells from other patients (thank you, other patients whoever you may be, and I know there are no cells from Henrietta Lacks, because I asked.) and a protein called Granulocyte-macrophage colony-stimulating factor (GM-CSF).  The trial has two arms:  arm one is testing the vaccine along with cyclophosphamide (a chemo drug, aka, cytoxan, that I was provided back in 2010, old hat to me . . ); arm two is testing the vaccine along with cytoxan and trastumzmab (herceptin, which I had not had the pleasure of until this week).  These two drugs are administered at low doses prior to the vasccine, to assist in priming the immune system.  I am in arm two.  GO arm two; beat those arm one wimps!! (Only kidding. In the name of science, may the best treatment regimen win,)

This is part of a new wave of cancer research.  Unlike chemotherapy that destroys and knocks you down, immunotherapy boosts you up--gives you (me) the patient, the tools to fight off cancer growth. It is cutting edge.  Forward-thinking.  Trendy.  Despite my personal trendiness, being accepted into the trial was not at all a sure thing.  This aspect is actually very interesting, because sponsors of clinical trials are very often seeking to enroll patients, and yet--it can be difficult to be accepted . .  a challenge to find exactly the right fit.  Sort of like dating, I suppose.  After three visits to Hopkins involving talking, responding to questions, being examined, and having numerous tests of the type one cannot study or cram for (CT-scan, bone scan, echo cardiogram), I was officially accepted into the trial.  The acceptance conversation was rather mellow.

Dr. E, the Principal Invesigtaor (EPI): I think you're eligible. 
CD:  Eligible, or in??
EPI: Yes, you're in. 
CD, with big smile: Yay!!  (I restrained myself from doing a little victory dance right then and there . . )

I reported in to Dr, S the next day.  Dr. S had mentioned this trial to me many months ago.  It is very high on his list of options, and it was similarly lauded by others I am privileged to know as well. 

Dr. S:  Well?
CD: Did you hear?  I'm in!
Dr. S: Oh?  (seeming a bit surprised, having been disappointed before, or perhaps because he had not read about it on the front page of the Post.)  Good!
CD: Oh, ye of little faith . . . I do get what I want, you know.  well, maybe not with this cancer thing, but in lots of other ways, I do . . . I will not disappoint you, Dr. S, I promise . .  

How could they not accept me?  Seriously.  I'm vigorously healthy (other than that cancer thing.)  I have some detectable cancer (a necessity for the trial), but not too much . . .  (disease that is progressing too fast, not stable, could result in ineligibility).  I am stage  IV (a necessitty for the trial), but very early stage IV (perhaps a better gamble?).  I am HER2 negative (a trial  requirement).   I do not have autoimmune disease  (importsnt because of the necessity that one's immune systems react to the vaccine.)  I am trendy, in line with the cutting edge nature of the vaccine.  I am very good at following directions (perhaps inclined to break rules in real life, but not here, where I really really don't want to be kicked out).  I am willing to travel to JH in Baltimore for many many days in a row for the next several months. I liked and commented on EPI's bright blue and orange hand and toenail polish colors and am willing to compete in a nail-off as the trial continues.  :)

So, I'm in.  I started on Monday.  I have an Orange JH patient card that I scan upon entering the facility, so they know I'm there.  I have coupons for free parking (a clinical trial deal.)  Beautiful Older Sister (BOS) flew up from Florida to accompany me, every day this week. Details on what I do there every day to follow in a later post (yes, colleague K, I know my posts are lengthy.)

This is new territory.  For science and for me. I am feeling brave and lucky and primed for the future. 

Yours, investigationally,


Tuesday, June 11, 2013

Living BEYOND: Less than two days til LBBC's Yoga on the Steps!

Well, it's not really on steps.  Living Beyond Breast Cancer's signature event started in my hometown, the City of Brotherly Love, on the steps of the Philadelphia Art Museum.  I spent many Saturdays there as a child, taking art classes and wandering around the museum and the grounds with my then BFF BP.  What a beautiful museum.  I'm still not sure exactly how they do the yoga on the steps . .  . but we don't need to worry about that here. 

LBBC's third Yoga (not) on the Steps in DC is on Thursday evening, June 13, less than 48 hours from now!!  It will be on the northeast quadrant of the Washington Monument (you know, that big tall white obelisk on the Mall that is being touched up after that little bit of earthquake damage . . )

Important points:

1) I am participating and fundraising and am VERY VERY close to my fundraising goal of $3000!  I am very fortunate and grateful to have so many thoughtful and generous friends.  THANK YOU, thank you, thank you all!  As I write this, I have reached $2750 in just over a week . .  So, if you'd like to support me, and others living beyond breast cancer, and LBBC --a wonderful organization that provides education, resources and support for breast cancer patients . .  now is the time!  Here is the link!  Here and now!

2) LBBC has asked me to be a speaker on Thursday.  What, me, speak? In public, not just over cocktails or Starbucks? What will I say?  Oh, I'll think of something.  Those who not only have to read my blog because they're close family and friends also know that I can talk --about virtually anything (well, maybe not wrestling or the inner and outer loops) including movies, shopping, restaurants, AND cancer.  Yeah, I think that's the topic of the day.  Please join me! See & hear my three minutes of fame.  Bring your yoga mat . . or just watch. It's a really easy, lovely, uplifting event with beautiful music.  Just come please please, I'd love to see some familiar faces in the crowd.  And I promise I'll think of something to say.

3) So here are my thoughts on Living Beyond Breast Cancer: At first I thought beyond meant--move on; get it over with.  Had breast cancer; took care of it with surgery, chemo, radiation. Done. Paid my dues.  Celebrate once a year and move forward.  But, noooo . . . . my cancer didn't actually leave. I've got it 4ever.  I'm living WITH it.

Then, I realized--I have to live both WITH AND BEYOND breast cancer.  It is a part of me—a big part of me (after all, I write a friggin blog about it). But cancer is not all of me.  I am so much more: a mom, a wife, a sister, a friend, a lawyer, a colleague, a yogi, (and many other names I have likely been called.)  I have so many things to enjoy and be excited about every day.  My world includes cancer but it is bigger. And fuller. And richer.  And I will do my darn best to keep it that way--to really live, be alive, be present in all I do. And that, my friends, is my beyond.  And I think that's what I'll talk about on Thursday.  What do you think?

Best to all, and check out that link!


Saturday, June 1, 2013

Cancer Diva Adventures: Getting Slammed

Dear bloggees,
I have two themes in this post, and I will tell you these themes up front, rather than making you wait til the end, or guess.   (like a Hollywood film, I will assume some readers need to be told rather than pick up on subtleties, and will also assume my writing isn't strong enough or edited enough to accurately convey these throughout.)

1) Per conventional wisdom, one of the ways of dealing with long-term challenges in life is to live in the moment--take each day as it comes.  Most often, for me, this is easier said than done.

2) Sometimes getting slammed is a surprise.
Other times, the surprise can be not getting hit hard at all. 

So, here we go.

Last week, I initiated another appointment with Dr S, as I did not fully understand where I stood medically and why certain next steps might be chosen.  I know, I need to be agile and ready to jump this way or that.  Chemo! No chemo!! Clinical trial! Turn right. No, veer to the left!  I'm trying to keep up, but often the knowledge gets ahead of me, and only a day or two later do the really good questions come to light. (Don't you hate that? Oh, when he said X at that party,  I wish I'd thought of saying Y . . . )Fortunately, unlike social situations where you only get one chance,  with Dr S, there's always another opportunity, and rock star schedulers M & L are willing to squeeze me in for something as lame as "I have questions" or "I'm confused."  (Apparently my confusion is quite evident.)    And this time, the questions were pivotal.  Why are we planning to stop chemo? When & how do we get rid of the nasty 20% of the cancer that just won't move out? Do we just let those cells stay as squatters for awhile while we try something investigational, not yet proven to effectively evict them? Why not switch to other chemo drugs first?

This time, BFF D accompanied me, as we were unable to meet for lunch, so going to my oncologist's office was the next best quality time I could offer that day.  Plus, she lives nearby, has been a cancer patient, and oh yeah, also is a  bioethicist.  That combined with the promise of post-appointment drinks made it a good deal all around.

We waited for over an hour in one of Dr S' well-appointed treatment rooms  I seriously do not mind waiting at all, given that while I flip through a magazine, he has seen three cancer patients, and such discussions should not be rushed.  Dr S strode in apologetically, as energized and impassioned as ever, with extremely clear responses to my concerns.  "No one knows what this cancer (pointing at me), in this Sandi Dennis, in this body (gesturing), with this arm (yeah, the lymphedema wrap), this . . . (hmm, where might he be going with this?) . . . will do, what it will respond to.  If anyone claims to know, they're full of it."

"We could hit you hard with more chemo--I could give you [drugs A, or D, or M]--and they would damage your stomach, make you sick, you'd lose your hair.  I'll probably have to do that later.  (Lovely.) So let's keep you strong for the long haul.  I think we have better options now.  We have a reprieve. Let's try something else, a vaccine trial, if you can get in.".

Dr S drew charts, similar to those he's drawn before, but this time he made a point of drawing them in my trusty spiral notebook, so I wouldn't lose them, like I do with the usual torn out pages.  

Somewhere in the discussion, Dr S uncharacteristically employed a sports analogy.  Boxing!  Although he indicated that he is not a boxing fan, he told this tale of Mike Tyson, Buster Douglas & Evander Holyfield in great detail.  I tried to look like I was paying attention, but my brain glazed over, just as if he were discussing the inner and outer loops of the beltway.  I  jotted a few notes, specifically "Tyson", "Hollyfield",  "Buster Douglas",  and "????".   All I actually grasped was that one of them beat Tyson, then never won another fight.  I'm quite foggy on all of this, but perhaps Mike Tyson represents my cancer and the other guys are the chemo drugs.  Maybe we want to save the strongest one for later, in case it only wins once?? I'm not clear on this, so THIS IS an EXCELLENT OPPORTUNITY for sports-savvy bloggees to COMMENT!  I also recall an ear biting incident, but I don't think Dr. S mentioned that.

Despite the boxing story, I was convinced. I understood.  I was on board. After all, in addition to being wise, this man has seen me, both inside and out.  He has seen my lymph nodes, my liver, my aorta. 

BFF D & I left Dr S' office in silence and headed around the corner to the nearest trattoria.

BFF D: Wow.
CD: I know.
BFF D: Omg!
CD: I know!
BFF D: I've never met a Dr llike him.
CD: I know.
BFF D: I've never met anyone like him!
CD: I know.
bFF D: I'm going to send my friend X to him.
CD: good idea. . . . . . .Hey, did you get the boxing analogy?
BFF D: No.
CD: Me neither.

Continued conversation I either forget or cannot share. you pick.

Two rounds of drinks, salad, and a plate of calamari later . . .

BFF D: Wow.
CD: I know.

So, I came to terms with the strategy of not hitting me hard at this particular time.  I get a reprieve, hopefully try something new & cutting edge, and I can "look forward" to getting "hit hard" later on.  Perhaps I'll wear ear muffs to those chemo sessions.

Several days later, I was innocently driving from PT (for lymphedema arm) to meet BFF J4 for lunch. (And no, I do not go out for lunch or drinks every day! These are occasional and much-needed respites between medical appointments, with supportive friends.) I was driving my trusty 2008 VW Eos hard-top convertible right by Dr S' office, and stopped at a light (just steps from the above-mentioned trattoria). I heard honking, a siren somewhere, then felt something hitting me hard, the crunching of metal . .  . I turned and saw a very large blue van sideswiping my passenger side, half in the road, half on the curb, and then he zoomed ahead, across the District line . . . leaving me, my shmooshed car, and seven MD police cars (that could not cross the line into DC) in his wake.  Mr driver of stolen van perhaps overheard the dr-patient discussion of "hitting me hard", but missed out on the "later" part.

I pulled around the corner, got out shaking, and ased bystanders and police officers WTF Just Happened??  It was quite a scene for a bit, lots of talk about the five or more miles police had chased him, officers asking if I'm ok "I think so, I mean I do have stage 4 cancer . . . " Maybe he slammed it out of me?   And seriously guys, if I learned nothing else in law school, I am not going to tell you right now on the spot whether or not I am injured.

I called BFFJ4, sorry I'm  late for lunch . . . She immediately stopped trying on new nail polish colors @ Bloomies (one block from the crime scene), and dashed over.  It is heartwarming to have such great friends.  BFF J4 took some pics"for my blog." 

I'm the one NOT wearing a police uniform. (in fact, it was a mild Spring day, and I had chosen J Crew khakis, a J Crew pale peach T with bright pink dots (hard to see in this pic), new blue Bjorn sandals (that match my favorite new OPI nail polish: "You're such a Budapest" (periwinkle-ish) and carrying my J crew Tartine satchel in pale pink and black colorblock.  (See, my fashion friends, I'm trying to weave some style into my blog . . . And yes, I do own some clothing that is not J. Crew).

Following this excuitement, BFF J4 & I still had lunch (hey, we were starving, and life goes on, right?  I then  drove my shmooshed car to the nearest VW place and BFF J4, a true savior, met me there and drove me home.  Car is in body shop, waiting to be insurance assessed and made pretty again.  (No, no loaner fancy new car, not even a rental, not even for cancer patients who need to drive to Baltimore the next morning--trust me, I tried to play the C-card.)    If  only there were a place that could fix me up in a week--now that would be worthwhile insurance.

Is there a fitting metaphor? Or moral? You might get slammed when you least expect it? Stay out of Montgomery County car chases, especially near the DC line? Or perhaps, I can get slammed and get up and walk away? It could have been so much worse.  What if my top were down? (on my car, I mean). 
 I later texted Beautiful Older Sister (BOS) the exciting news of my involvement in the car chase and she was appropriately concerned.  A day later, she texted to ask how I was feeling.  What huh? It's just a Wednesday . . .why do you ask?  I had forgotten tbe whole car thing.  Spent the morning at Hopkins, then drove to the beach with Lovely Daughter (LD),  in her unsmashed VW Jetta.

Perhaps I am learning to take life a day at a time.

Yours, in the moment,