Outside the Law

October 11, 2011

So, you’re better now, right?

Filed under: Cancer — Jeniene @ 8:38 pm

Six months of chemotherapy + bilateral mastectomy +six weeks of daily radiation = who the hell knows.

After all the active treatment, I was told that the chemotherapy didn’t “have the effect [they] had hoped it would.”  The surgery on the other hand was considered a success and they believe they got all of the tumors.  The radiation was more of a precautionary measure as my recurrence numbers are at about 50%.  So, in the end, I went through all that and have a 50/50 chance of doing it all over again.  Not the best odds, no.

So, after almost a years worth of treatment, I am often asked the question, “Are you better? Are you a ‘Survivor’?”  In the face of this I often stammer and say…”Well, yes, but  it’s complicated.”  This is–by far–the best answer I’ve ever seen to a question that is too nuanced and depressing for me to answer on most days. In one fell swoop, it sums up what I either can’t or won’t say on any given day.

I look forward to enjoying long-standing membership in the 60 percent club.

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May 29, 2011

Clinical Chemo Trial: Day 70 – So Close and Yet …

Filed under: Cancer — Jeniene @ 1:33 am

Well, here we are – almost at the end of the line.  I just finished my second to last chemo infusion.  One more to go.  Based on every discussion with every breast person at Dana Farber, I had banked on finishing my chemo treatment in early June, enjoying a chemo and surgery free summer, going to Martha’s Vineyard for two weeks at the end of July, having one surgery (a double mastectomy and permanent reconstruction) in early August and then enjoying a (knock on wood) cancer free life for the next X number of years.

But then the Universe once again turned in my direction and laughed and laughed.

On Tuesday of last week, I learned from my oncologist and research nurse that, counter to what the oncologist, surgeon and plastic surgeon all told me, I need radiation therapy.  That means, that I must have the bilateral mastectomy and a temporary implant/expander surgery first (June 21st), then undergo daily radiation for six weeks (the temporary surgery is required because the docs won’t radiate new tissue) and THEN have the permanent reconstructive surgery after that.  If you haven’t been able to follow my timeline, that means that I WILL NOT have a chemo/surgery free summer with an awesome Martha’s Vineyard vacation, etc.  That means my entire summer, fall and very likely winter is totally and completely hosed.

Before you say anything, let me say that I agree with what you’re thinking.  You’re thinking, “Jeniene, regardless of your shitty summer and screwed up fall and whacked out winter, being cancer free come 2012 is the ultimate goal, right?.”  Yes!  I totally agree.  That said, I cannot help but feel an extraordinary amount of animosity toward my entire breast cancer team.  They, in no uncertain terms, suck.

Okay, I got that out.

I have the big scan on June 13th.  That’s the one that will tell me if the chemotherapy did indeed do it’s job:  decrease the size of the masses.  It will also reveal whether there are any other masses that have cropped up over the past 70 days.

I’ll keep you posted on the results.

March 20, 2011

Clinical Chemo Trial: Day 28 – Fear(less)

Filed under: Cancer — Jeniene @ 7:55 pm
Tags: , , , , ,
  • True lasting success comes only with surrender, which is the opposite of control. ~ Daily Meditation
  • Is it fear or dread?… This is something that’s ultimately going to help you — that’s nothing to be afraid of.  It may just be semantics, but the distinction, I hope, will help. ~ Jeff
  • If you accept that you are scared, and admit it to others as you have … fear has no where left to go. ~ Isabelle
  • [O]ne could make the same argument about our medical speed bumps, eh? They help us appreciate the beauty of boring ol’ everyday living …. [E]njoying the change of seasons. ~ Ken

The morning of this most recent Wrench Wednesday, I posted how frightened I was to face it.  Later that day, I received four comments from friends (well, one was from my daily meditation, but we’re on friendly terms).  Each of the responses were really helpful.   My friend Jeff mentioned that although it might have seemed like semantics, I was probably feeling more dread than fear over the pending treatment.  He was right.  I knew what to expect, I was just dreading going through it again.  My friend Isabelle reminded me that just saying it out loud was enough to release it and the daily meditation echoed that.  And my friend, Ken, simply reminded me to enjoy the changes of seasons.

So, anyway, armed with those helpful missives, I approached Wrench Wednesday a little differently.  I admitted to my oncologist all of the side effects I was suffering and requested assistance (which helped beautifully).  I admitted to myself that I was dreading this thing that is ultimately going to help me (we hope) and that it was okay to dread it.  It sucked.  It made me feel awful.  But I made it through.  And I also remembered to recognize that Spring is finally upon us and that the weather is warming up.  This medical speed bump, as Ken called it, has indeed made me appreciate the boring, everyday aspect of my life.  Just the non-Wrench Wednesday weeks are better in comparison.

So, for anyone out there who thought they would send me a little note but refrained because it seemed trite or, I don’t know, seemingly insignificant, please send it.  You never know when it might change someone’s perspective monumentally.

March 6, 2011

Clinical Chemo Trial: Day 14 (clang clang clang)

When I was 12, my mom was undergoing chemotherapy for uterine cancer.  I asked her once what it felt like to deal with the surgery and then the chemo drugs.   She, of few words, said, “It [felt] like getting kicked in the teeth by a mule and then the mule just stands over you stepping on you periodically.”  Having never been kicked in the teeth by a mule I didn’t have a great point of reference, but I was certainly born with a vivid imagination.  Plus, all I really needed was to look at my mom’s face and posture after her treatments and I was clear how bad she was feeling.  This is in the ’80s when the response drugs to chemotherapy weren’t close to what they are now.  My mom wore a wig and went to work and dealt with it on her own.  She was a tough, strong, amazing woman.  In some ways she was lucky because her kids were a bit older and self-sufficient, but still; she came home, cooked dinner, sometimes played Uno or Trivial Pursuit with us, confirmed that our homework was completed, ironed clothes for the next day and made it all seem … seamless.  Let me repeat that she was this phenomenally strong amazing woman.

I am day four past my second chemo infusion and only now capable of typing on the computer and that is not without numerous typos, breaks and confusion.  I can barely see.  The headaches I am suffering from the Avastin trial drug are excruciating.  They thankfully have seemed to taper off a bit this morning.   My saving grace is that I have an enormous support network around me keeping me relatively sane (Gregory to be certain, Logan, Greg’s parents, and friends and colleagues who are stepping up where I am falling down).

My big question for myself, is am I tough enough.  Tough enough to kick this things ass before it kicks mine.  I’ve got my mom’s blood in me, so I’m pretty sure that I am.  But I won’t lie, this weekend has tested me.

More later.

February 18, 2011

Clinical Chemo Trial: Day 1 (tick tock tick tock)

Filed under: Cancer,Greg — Jeniene @ 11:40 am

My Five Things to be Thankful For (this was suggested by my very good friend Kim and her lovely daughter) For Day Number One:

5) No one gave me the wrong medication (at least that we yet know about);

4) Although I had to endure the entire 3 hour infusion madness standing up because of my ridiculous back issues, it was still relatively easy;

3) We went to the Original International Dumpling House afterwards (something I’d been craving all day) and had the garlic watercress (and it was as delicious as I’d remembered);

2) Dana Farber is like a well-oiled machine where they see a million breasts a year and they make the process easy peasey;

AND the number one reason I have to smile about the day is because …

1) My guy sat with me the entire 7 hours without one complaint and was always ready with a smile and a joke on hand to cheer me up.  He is indeed the best.

February 16, 2011

What’s it going to be?

Filed under: Cancer — Jeniene @ 4:47 am
Tags: , , ,

After reading my recent posts about my hair and breasts not being the “things” that define me, a friend asked me what I thought my “thing” surrounding this cancer just might be?  Given that I haven’t a clue what to expect and it’s all unchartered territory, it’s hard to say.  But as the days have passed and I’ve traveled to Dana Farber multiple times, I think I may have just figured it out.

The thing that may just “get” me is that, just by looking at me, there will be an instant (and correct) assumption that I’m “sick.”  Like I said, I don’t care that I’m going to lose my hair.  It’s just hair.  It grows back.  I keep it wildly short anyway, and it’s a temporary effect.  That said, it’s not just the hair on my head that I’ll lose.  I’ll lose my eyebrows and eyelashes (and other less obvious places).  That will make a concerted difference on how I look.  That will define me as a person with cancer.

Now, the question remains, do I care that it defines me as a person with cancer?  That’s not something I can yet answer with any certainty.  I don’t care that I have cancer.  I don’t care that those people with whom I’ve decided to share it know that I have cancer.  But I may care that anyone and everyone who takes an even passing glance at me will make that assumption.  And really, it’s not so much the assumption that’s troubling, but the reaction accompanying that assumption.  There will be the ignorant boobs who quickly pull their children away, thinking that cancer is contagious.  There will be those who, simpering smile plastered on their faces, stroke me with platitudes.  Or those, like the ones who felt privileged to walk up and touch my belly when I was pregnant, who will feel obligated/privileged/determined to share their “cancer story” with me.

I’m thinking that this new territory may be a bit rockier than anticipated.  I guess I’d rather stay a bit more anonymous about this than circumstances will allow.

Alas, we embark upon a journey unexpected.  And the unexpected does indeed happen.

February 8, 2011

Let the Healing Begin!

Do not let others choose your path for you or dictate who you are … you choose.  Always.  And when you choose?  Choose the wrench.

I chose the wrench” – Will Hunting

Warning: This is extremely long-winded and has some profanity.  You have been warned.

Okay, so as you already know, my original mammogram/ultrasound showed one lump that was determined to be cancer (probably early stage II).  And that’s what we focused on when planning for surgery.  They then did a bone scan just as a precautionary measure and found multiple masses that were missed the first go round. These masses have now been determined to also be cancer and I’ve been upgraded to Stage III.

Yesterday, Greg and I met with the oncologist and a research nurse to discuss the actual plan in light of this new information.  Rather than having the surgery on the 14th as planned, they have suggested, and I have agreed (assuming I am accepted) to enter into a clinical chemo trial to start on Wednesday, the 16th.  That trial, will involve the traditional chemotherapy drugs, with one more new drug added that is in its “trial phase,” hence the term Clinical Trial.

So, this is what we’re looking at (I’ll try to be brief and provide just the highlights):  The trial will last 4 months (1/2 day treatments every 2 weeks in Boston at Dana Farber (Feb-May)).   Then for one month (June), I will stop the trial drug because it inhibits wound healing and will undergo treatment to prepare for surgery.  Then I will have surgery at the end of that month.  So, all in all, we’re looking at surgery in July.  That surgery will be at least a single mastectomy (but based on the results of the genetics tests I’ve just received) I may opt for a double mastectomy.

This is way more information than you probably needed or wanted (and without a doubt goes beyond the bounds of HIPAA), but I want everyone who NEEDS to know, to know the specifics of what’s going on.

As you may know, both the blog title and the quote are from Good Will Hunting, a fabulous film I’ve seen too many times to be considered normal, and I think these two quotes from it are brilliant and applicable.

The wrench quote is actually a bit longer:

(Will discussing his foster father’s abusive behavior)

Will: He used to just put a belt, a stick, and a wrench on the kitchen table and say, “Choose.”
Sean: Well, I gotta go with the belt there.
Will: I used to go with the wrench.
Sean: Why?
Will: Cause fuck him, that’s why.

The way I see it, this Clinical Chemo Trial and the double mastectomy are the “wrench.”  And I choose it.  Wanna know why?  Cause fuck cancer.  That’s why.

January 19, 2011

Days 3-13: Chaos Theory

Filed under: Cancer,Uncategorized — Jeniene @ 4:57 am
Tags: , , , ,

Okay, clearly I lied.  Not purposefully, of course.  My vow to write everyday was a legitimate one.  I absolutely want to post everyday.  But the idea of writing vs. actually writing are two very different things  Nevertheless, I am truly going to make a concerted effort.  Well, more concerted than over the past 10 days.

Sixteen days ago, a small marble-like mass and an initially small twinge of arm pain launched me into what I have come to think of as a bifurcation event (and presumably onto the first steps of a journey that will be an unsettling and, yet, transformational).  If you’re keeping up with this blog at all, you know that at the time all this took place, I had recently made a significant change in my life as a lawyer, a wife and a busy mother of one young child.  I don’t have time for transformational growth!  However, clearly, I have no choice: I have been swept up by a process as natural as that which turns a caterpillar into a butterfly.  Growth is what I am experiencing, whether I want to or not.  I have come to understand that real growth is not the smooth, gradual, always-under-control experience we all wish for, but actually occurs—by bifurcation.

A bifurcation is, literally, a “fork in the road” and was initially coined to describe the pitchfork-like shape of a graph that signaled its existence in lab experiments. When a bifurcation occurs, we have reached a point in our journey through life at which a decision must be made: Do we go right or do we turn left?

More often than not, I suspect, we don’t even see the need for a decision.  We are often so caught up in the events of the bifurcation, often traumatic ones, that, as we approach the fork in the road, we close our eyes to the fact that the path we are traveling is ending.  We are forced to make a choice about which new path to take, but we march right on through, out into the tall grass and weeds, oblivious to the fact that our life must now follow a new course.

With this latest change in my otherwise orderly life, I have been noting the number of bifurcations in my life.  Many of them good: getting married; having my son; changing careers.  And some not so great: my mom’s death; my brother’s death; a couple of miscarriages.  On whole, the good (as is often the case) balances out with the bad.

As I’ve gotten older, I’ve found these major life shifts to be less … vertiginous.  And I think I’ve even figured out how to not close my eyes when the path is coming to an end.  Let’s just hope I can continue to stay out of the weeds.

January 7, 2011

Day 2 – Let me tell you a story . . .

Filed under: Cancer — Jeniene @ 12:23 am
Tags: , ,

The prompt from today’s The Daily Post suggests that I tell a story.  Well, I guess my story for today would be that I have been diagnosed with an aggressive form of breast cancer.  How’s that for a story?  I don’t know; maybe that’s not the best story, but it’s all I’ve got today.

More tomorrow.

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