tag:blogger.com,1999:blog-15958584751069767212024-03-05T04:20:00.615-08:00The Effervescent FightWhen I was 22 I was diagnosed with Aggressive Angiomyxoma -- a sarcoma with only 250 reported cases in the world. [SAY WHAT??!] Through my journey -- which I will be on for the rest of my life -- I have learned to be vulnerable (yes, the V word), to love deeply, and to live like I've never lived before. These are my thoughts...Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-1595858475106976721.post-50332231701005530182017-04-10T17:56:00.000-07:002017-04-10T17:56:55.903-07:00On The Other SideRepost of my blog on Dana Farber Cancer Institute's Insight Blog: <a href="http://blog.dana-farber.org/insight/2017/04/on-the-other-side/">http://blog.dana-farber.org/insight/2017/04/on-the-other-side/</a>.Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com1tag:blogger.com,1999:blog-1595858475106976721.post-56184732374303096232016-11-07T14:28:00.003-08:002021-12-01T07:32:35.497-08:00Beautiful Grief<div class="MsoNormal">
It was an especially busy day in the office. I was helping
my colleague set up for an in-office Back to School product sale for employees.
Of course, communications ended up doing most of the work and our awesome video
guys helped us transfer boxes and boxes of product from the loading dock. My
colleague was running around making sure everything arrived when I looked down
at my phone to see Facebook messages from my Colorado friends (from my life-changing climbing trip with <a href="http://firstdescents.org/?gclid=CjwKEAiAjIbBBRCitNvJ1o257WESJADpoUt0j-MMXLH-0iZ2fhBnEnJvADvBrnx18ZCwprY8Y246DBoCgZLw_wcB">First Descents</a>). I immediately panicked inside because we knew it was
scan day for “<a href="http://theeffervescentfight.blogspot.com/2015/09/buttermilk-feathers.html">LPMuffin</a>.” She was one of the amazing souls I met in Colorado and had just
fought off her cancer before going on the trip…but we feared it was back. I
looked down at my Facebook messages and well, she said it was back, and it was not
good…and she likely had it the whole time we were climbing in Colorado. WTF?! It was in her body when she was scaling rocks like a boss?? I
felt like I was going to vomit and cry and didn’t know what to do because I had
to keep working this event. I sat for a moment and then worked through the fog. I knew this could
happen…meeting all of these cancer survivors…it could come back for any one of
us. I just didn’t think it would happen so fast. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I went back up to my floor and sat in my cube. I knew I couldn’t
hold it together and I just needed someone to be there for me. In the past I
would have held it in, but I’ve learned that is just <i style="mso-bidi-font-style: normal;">such</i> a bad idea and it’s ok to allow people to be there for you.
The thought of crying at work though – ah! I went into my boss’ office and sat
in her comfy chair. I was all but three words in when I lost it. She is amazing
and immediately shut her door, grabbed me tissues, and positioned me in the
chair where people couldn’t see me through the glass window of her office. She
let me cry, and she listened. She said something that really made me think
about how I have all these people in my life now that had been sick, were sick,
and could be sick again. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
**<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today. Today I celebrated the life of Larry C. at his
funeral. I <a href="http://theeffervescentfight.blogspot.com/2015/07/the-most-amazing-gift-of-all.html">wrote
about</a> Larry C. about a year and a half ago when Dana Farber awarded him
volunteer of the year. To say Larry had a profound impact on my life would be
an understatement. I got to see Larry just about monthly at our Patient and Family
Advisory Council meetings. Although I didn’t spend a lot of time with him, it
was so easy to see his soul, and who he was and what he had to give. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Larry was calm, humble, smart, compassionate, thoughtful…I
could go on and on. Hearing what his loved ones had to say about him today was
so special. What I saw in him each month was what he lived by. Larry loved the
outdoors and would go on what most would call crazy camping trips in the dead
of winter in the Adirondacks. His friend talked about how Larry never complained
about the heat, the cold, the bugs…the challenge. He remembered Larry’s comment
that, “Any day outdoors is better than a day in the office.” Everyone smiled
and laughed. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Larry cared for his wife when she was ill with cancer for
ten years and after she passed he spent his next ten years helping
others at Dana Farber. He then, ever so quietly, started his own cancer battle
in 2014.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Larry just had such an appreciation. Appreciation for his
family, his ability to give back at Dana Farber and to honor his late wife, the
outdoors…and just being alive. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Not only did I love Larry for who he was and how you were
just drawn to him, but today I reflect on how many gifts he gave me and many
others. He touched so many lives. He is the kind of man that makes you want to
do better and remind yourself every second of every day that life is beautiful
and we <i style="mso-bidi-font-style: normal;">must</i> spend our time finding
the beauty in it and appreciating it. I can’t help but find the irony in his
love for the outdoors and what the outdoors has done for me and so many other
First Descents alumni. He was a true angel walking this earth and he is looking
down with his infectious smile right now saying in is typical, humble way, <i style="mso-bidi-font-style: normal;">I was just doing my job. <o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As I was walking out of the funeral with two
friends/employees of Dana Farber, one of them turned to us and said that Larry
wanted his donations directed to our Patient and Family Advisory Council. Well,
wow. <i style="mso-bidi-font-style: normal;">Of course</i> he did.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
**<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After I processed that LP Muffin’s cancer was back, my
friends and I went into full on support mode and began planning our trip up to
Canada. LP Muffin lives her life with such beauty, grace, and adventure. She is
a Yogi that travels the world and the way she handled everything was
remarkable. She throws fear out the damn window. Today, she is doing extremely
well due to a chemo drug with minimal side affects. Her future is unknown, but
that hasn’t stopped her from living for one god damn minute. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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<div class="MsoNormal">
My life is SO much fuller with LP Muffin and Larry in it.
Was there pain when LP Muffin relapsed and when Larry was put to rest today?
Yes. Pain, tears, grief…but also abundant gratitude and warmth. They have both
changed my life. How lucky am I? How lucky am I at the age of 29 years old to
continually be reminded that I need to be a better person, shouldn’t sweat the
small stuff, value family and friends, and get out and live! When I am
repelling off cliffs in Thailand next month I will have Larry in my heart – and
when I get scared I’ll remember what the Rabbi said today at the funeral, “Life
is not always about getting to the top, or the summit, we must focus on the
journey.”<o:p></o:p></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com1tag:blogger.com,1999:blog-1595858475106976721.post-21939248290402387392015-12-07T17:50:00.001-08:002015-12-07T17:54:13.477-08:00Beyond Your Mind<div class="MsoNormal">
Sometimes I have so much “Becky time” (or alone time) that I
start to analyze every motion or movement I make; what day it is, who I am,
what I’m doing…and then I think <i style="mso-bidi-font-style: normal;">stop,
stop, stop. Get out of your head!<o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A few weeks ago, my favorite Soul Cycle instructor, Sal (no,
I will never stop talking about him) starting yelling to us during a sprint –
he said, “Your biggest obstacle is…your biggest obstacle is…<i style="mso-bidi-font-style: normal;">your mind.”</i> I thought he was going to
say that <i style="mso-bidi-font-style: normal;">you</i> are your biggest
obstacle, but he took it one step further and said it’s your mind. Welp, my
mind was blown, because it was so god damn true. I pedaled the shit out of the
rest of class and went home and kept repeating Sal’s words in my head. Every
scenario in my life where I have been challenged and felt like I couldn’t do it
– my mind was telling me ‘no.’ The night before each of my surgeries when I was
scared to DEATH, my mind was taking over. <i style="mso-bidi-font-style: normal;">What
if they don’t get all of the tumor? What if I need a colostomy bag? What if the
surgeon doesn’t get enough sleep? What if I can’t tolerate the pain? What if I
don’t get my own room in the hospital? <o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What I’ve realized is that all the work I’ve done on myself
– <i style="mso-bidi-font-style: normal;">and for myself</i> – has been to
overcome my mind. Exercise, surrounding myself with the people I love and love
me back, family, and just feelin’ and workin’ my shit out…it has all said, “Hey
mind, take that! I’m stronger, braver, and not only <i style="mso-bidi-font-style: normal;">can </i>I do this, but I <i style="mso-bidi-font-style: normal;">will.”<o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Three or four years ago, I would have never gone on my rock
climbing <a href="http://theeffervescentfight.blogspot.com/2015/08/acceptance.html">trip to Colorado</a> with a group of cancer survivors. I would have thought, <i style="mso-bidi-font-style: normal;">I can’t rock climb; I’m afraid of heights.
Why would I want to be scared like that? I have a weird tumor, so I would be
out of place with a bunch of cancer survivors. It’s also really uncomfortable to
be with a group of strangers, why would I want to do that? </i><span style="mso-spacerun: yes;"> </span>I also would have NEVER gotten up in front of
500 people and <a href="http://theeffervescentfight.blogspot.com/2015/06/shine-bright-like-diamond.html">spoke</a>
about my cancer journey. Thoughts on that one: <i style="mso-bidi-font-style: normal;">Be – dare I say – vulnerable in front of other people, let alone a
crowd of 500? Hell, no. They will totally feel bad for me and I don’t want
their pity. I don’t need them.</i><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Present day, the score is definitely Becky beats Mind in
overtime. All the work I have done to understand how my disease has affected me
has really been a gift, because I have learned how to push through thoughts
that don’t serve me, and reach even higher than I ever imagined. I am so proud
of myself; proud because the thought of something today, would have never been
an option in my mind years ago. I am currently <a href="https://support.firstdescents.org/fundraise?fcid=506452">raising money</a>
for First Descents and if I reach my goal I get to go on the next level
program, which is an international trip to surf, go on a Safari, ice climb, or
whatever other exotic programs they dream up, and I am not even that scared!
Well…maybe a little, but I am not scared enough to prevent me from going!<br />
<br />
The simple fact is, the more I push myself and surpass my
thoughts, the more I learn who I am, and who I continue to evolve into. You are
never done growing, living, stretching, imagining, loving, and being. How
exciting!</div>
<div class="MsoNormal">
<o:p></o:p></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com2tag:blogger.com,1999:blog-1595858475106976721.post-29153954261069766182015-09-29T18:09:00.001-07:002015-09-29T18:10:15.717-07:00Buttermilk Feathers<div class="MsoNormal">
Fear is a funny thing. It’s a thing that I have been
thinking about a lot lately – does the way we face fear affect us? Do we face
fear differently as we grow? I’m going to answer that question with a big fat
yes. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve always considered myself a bit of a risk-taker, but my
climbing trip in Colorado with First Descents forced me to push my boundaries
and look fear in big, dark pupils. Almost all of the young adult cancer
survivors that go on these white-water kayaking, surfing, or rock climbing
trips have never done these activities before and are scared of heights, the water,
or flipping in the kayak. But, that was the point – to look fear in the face
and overcome it. And hey, guess what, something really cool is on the other
side.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On the last day of our week in Colorado we had our
“graduation day climb,” which was a multi-pitch climb. This means that we kept
going up, up, up, as the guide made different paths for us, so we could
eventually get to the summit. I went into the week scared of heights and only
had moments of fear throughout the week, but it was always something I could
talk myself out of. Well, the graduation climb was a different story. I did ok
on the first two pitches (or legs) of the climb, but as I started out on the
third one, what they call “the exposure” hit me. I was hanging off the side of
a cliff, hundreds of feet off the ground with a rope as my safety. As I was
about to start climbing, I shouted out to everyone around me that I was scared <i style="mso-bidi-font-style: normal;">as shit</i>, ‘cause of course telling
everyone made me feel better, ha! After my first two steps, I just freaked out
and started crying. Everyone near me – as they had all week – encouraged me to
just let it out and feel scared ‘cause hell I was hanging off the side of a
cliff. Before this week, I would have never let myself cry it out, especially
in front of all those people. Would I have given up? No. But, would I have gotten
the same thing out of the experience? I highly doubt it. After crying it out
for 30 seconds or so, I continued my climb and kicked its ass! I stared that
big bastard named fear right in the face and I said hell I’m going to feel you
and overcome you. In that moment, I think I discovered a new piece of myself
and continued on my journey to take in all the beauty in life.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
**<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
About a week after I got back from my Colorado trip, I got
the news that one of my best friends from the week received bad scan results.
This beautiful, fun, vibrant, adorable, silly, brave, remarkable 26-year-old’s
Hodgkin’s Lymphoma was back with a vengeance. Having all these new, wonderful
friends that are cancer survivors, I knew this was a possibility, but that was
a fear that was simply easy to overcome. The fullness I have in my life from
the people I met and my friend who I will call Lemmon Poppyseed Muffin is
indescribable. I am <i style="mso-bidi-font-style: normal;">better</i> for
knowing them.<o:p></o:p></div>
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<br /></div>
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My three friends and I just got back from an amazing weekend
visiting LP Muffin. She is about to start a chemo regimen, but in the mean
time, she is living the SHIT out of life. Every second we were there; there was
a smile, a giggle, a dance move, a funny face from her – so much amazing
energy. She defines lighting up the room. I am not a huge cuddler or toucher –
I mean sometimes – but not huge ha, and I cuddled the shit out of LP Muffin and
my other friends. I played with Muffin’s hair, gave her a back rub, sooo many
hugs, and lots of dancing. When we were in Colorado I was able to get a tiny
ponytail in her hair that stuck straight up and she was so excited (it’s still
growing back from chemo), and on this trip I was able to make six little
ponytails! She looked like a character from Dr. Seuss and it was hilarious! She
was just so excited that her hair was long enough to get six mini ponytails in.
By the way she has the best, softest hair ever so we deemed it Buttermilk
Feathers.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
The weekend was full of laughs, love, exploring, crying, and
so much more. As I was reflecting on the trip last night, I just continued to
marvel at LP Muffin. Her relationship with fear is beyond anything I have ever
seen. My little Lemon Poppyseed Muffin has cancer all over her chest and in her
pelvis and she is breakin’ it down on the dance floor and traveling every
moment she gets. <i style="mso-bidi-font-style: normal;">She</i> is living. <i style="mso-bidi-font-style: normal;">She</i> is learning about herself each day,
growing, loving more, seeing the beauty that is all around us in this world,
and touching lives like mine. There is no way I can put into words how lucky I
am to have her in my life. Her presence and inspiration demolishes the big bad
fear bastard. Hanging off the side of a mountain? Hell, that’s nothing. HI
FEAR, MY NAME IS BECKY.<o:p></o:p></div>
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<i style="mso-bidi-font-style: normal;">FILU DR. METH.<o:p></o:p></i></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com3tag:blogger.com,1999:blog-1595858475106976721.post-17442019958790892822015-08-22T10:35:00.001-07:002015-08-22T10:45:11.021-07:00Acceptance<div class="MsoNormal">
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<div class="MsoNormal">
<div class="MsoNormal">
<span style="color: #666666; font-family: 'Trebuchet MS'; font-size: 10pt;">It’s
been two weeks now since I got back from one of THE MOST AMAZING experiences of
my life – my <a href="http://firstdescents.org/">First Descents</a> rock-climbing
trip in Estes Park, Colorado. I thought I would be itching to write and have so
much to get out, but the thing is, the week had such a profound impact on me
that I am having trouble articulating it. I know, I know, when am I ever at a
loss for words?!<o:p></o:p></span></div>
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<span style="color: #666666;"><br /></span></div>
<div class="MsoNormal">
<span style="color: #666666; font-family: 'Trebuchet MS'; font-size: 10pt;">Every
night when I go to bed, I have been thinking about how to write about it –
what I can say that will truly encapsulate the experience. Honestly, that is
something I cannot do. The week was something that I shared with 13 other young
adult cancer survivors and First Descents staff members that only we can
understand – and only we are lucky enough to take with us on our journey
through life.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="color: #666666;"><br /></span></div>
<div class="MsoNormal">
<span style="color: #666666; font-family: 'Trebuchet MS'; font-size: 10pt;">While
running this morning to Kelly Clarkson, of course, the word acceptance came to
mind. The reason I even applied to First Descents, actually went on the trip,
and was able to absorb the experience was all because of <i>acceptance. </i>I
have worked so hard to accept what I have, and that I have cancer. A part of me
always thought I had, because I am a “these are my cards” kind of person and
never, ever say, “why me?” Well, yes that is part of it, but the other part is
articulating it and living it. All this volunteer work I have been doing has
come with me talking about my cancer and “coming out of the cancer closet.”
I’ve really looked at it as – I am telling my story to help other people. When
friends or my family say, well it’s helping you too; I kind of shrug it off and
say “yeah, yeah.” Well, HELL YEAH it has helped me too, it just took me a
little time to open my goddamn eyes to it. I sort of realized it when I was
getting ready to go on my FD trip. People would ask me where I was going and I
would start with, “…it’s a rock-climbing trip in Colorado and I don’t know
anyone.” They would keep asking questions so then I would say, “well I’m a
cancer survivor and it’s a trip for young adult cancer survivors.” The words
actually rolled off my tongue pretty easily and I was, dare I say, proud to say
them.<o:p></o:p></span></div>
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<span style="color: #666666;"><br /></span></div>
<div class="MsoNormal">
<span style="color: #666666; font-family: 'Trebuchet MS'; font-size: 10pt;">**<o:p></o:p></span><br />
<span style="color: #666666; font-family: 'Trebuchet MS'; font-size: 10pt;"><br /></span></div>
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<span style="color: #666666; font-family: 'Trebuchet MS'; font-size: 10pt;">When
I arrived at the FD camp, I had no idea what to expect. There were all these
people, from all over the country and Canada (whoop whoop), and I was worried
that I wouldn’t relate to them or they would be “different” than me. I have a
“different” type of cancer and never had chemo…<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="color: #666666;"><br /></span></div>
<div class="MsoNormal">
<span style="color: #666666;"><span style="font-family: 'Trebuchet MS'; font-size: 10pt;">On
the surface we were all very different people, but on the inside, we were so
similar and so full of love. As the week went on, it was honestly a pleasure to
get to know everyone, hear their stories, and understand their lives. I truly
think I am a better person for going on the trip and now having a whole new
family in my life. I don’t think I would have gotten as much out of the
experience had I gone sooner. I had to accept my situation before I could
accept that of others. At the end of the day we are all humans living in the
same world; everyone has a battle, a story, and a will to live, and when we
look inside each other it is only then that we form the most beautiful
connections. </span><span style="font-family: 'Trebuchet MS'; font-size: 10pt;"> </span></span></div>
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Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com3tag:blogger.com,1999:blog-1595858475106976721.post-80156476348443577022015-07-01T18:37:00.002-07:002015-07-02T07:53:42.729-07:00The Most Amazing Gift of All<div class="MsoNormal">
Almost a couple of months ago now we buried my Nana – my
last living grandparent. Nana (better known as Hun or Rosalie) was a petite
little thing with red, red hair and a heart of gold. She loved each and every
member of her family more than words could say, and was so incredibly proud of
her 4 children and 11 grandchildren. Nana and Pop Pop, who she is now with,
left such an amazing legacy that will live on in all of us. The funeral was
really sad, but such a nice tribute to her life. My Aunt Lorri delivered one of
the eulogies and she talked about how Nana was so incredibly selfless and she <i style="mso-bidi-font-style: normal;">lived</i> to do things for other people.
Whether it was giving the mailman a pot of chicken soup, or making sure <i style="mso-bidi-font-style: normal;">everyone</i> had leftovers to leave with
after Thanksgiving, she got such joy out of making others happy. I see this
each and every day in my mom – she is<i style="mso-bidi-font-style: normal;"> her</i>
mother’s daughter, and my sister and I are <i style="mso-bidi-font-style: normal;">my
</i>mother’s daughters. We love giving presents to other people, getting a
coffee for the birthday girl at work, or sending a card of support when someone
needs a pick-me-up. What better feeling is there than adding a little light to
someone’s day?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
**<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last Wednesday I had a Dana Farber Volunteer Reception to go
to after work. I had a really busy work week and was running around like a
crazy person, so by the time I arrived at Dana Farber that night I was pretty
much just going through the motions. I didn't really know much about the reception,
just that the head of Volunteer Services asked me to say a few words as
Co-Chair of the PFAC. I was anticipating a smaller reception, but when I walked
in, the cafeteria was completely filled with tables, WITH WINSTON’S FLOWER
ARRANGEMENTS ON THEM, YES I’M OBSESSED, and a couple hundred people. It was a
celebration of the 1,000+ volunteers at Dana Farber (yes you heard me) from
people that push the food carts around in the infusion suites, to people who
hand out newspapers to patients, to those that sit at the concierge desk – a room
full of wonderful people. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I found a seat with some fellow PFAC members and started to
read through the program. There were only a few speakers, and I was one of
them. Shoot, should I have planned something more rehearsed? Nah, I like
speaking off the cuff. All things considered, I made a beeline for the bar to
get a nice glass of wine. The night began with remarks from the heads of
Volunteer Services thanking everyone in the room for what they do and
emphasizing what an impact it has on patients and caretakers. During those
remarks I was jotting down some notes of what I would say, granted I did think
about it on my drive into the city. I was up next…so I headed up there with the
Co-Chair of the Pedi PFAC who was going to speak right after me. As I got up to
the microphone, I was honestly struck by the fact that all these people, in
this room, volunteer their time to help people like me. I started by
introducing myself as a patient and the Co-Chair of the Adult PFAC, and
thanking everyone for what they do. I told them that they have no idea how far
their small gestures go. I told them that as a patient one tiny little thing
can throw you off course, and at the same time one tiny little thing can get
you through something like Scan days. I went on to share a bit about what the
PFAC does, and what we have accomplished, and hope to accomplish in the future.
Then, I ended with my favorite story – the story of my first rounds experience
after my first surgery when 8 people marched in at 5 a.m. and started reading
my case like in Grey’s Anatomy. I added in a few jokes before I got there about
how my dad was worried I thought the pain button was a toy and my mom, the
nurse, said, “Don’t worry Ron, it’s regulated.” Then I explained how I
interrupted the doctor delivering his Grey’s Anatomy monologue about “my case”
and said <i style="mso-bidi-font-style: normal;">woah, woah, woah, </i>then asked
them one by one who they were. I finished by saying, “Well I’m Becky.” I told
this story to help everyone in the room realize that something as simple as
introducing yourself can make a HUGE difference to a patient, and that’s why I
do what I do volunteering on the PFAC. If I can improve just 15 seconds of
another cancer patient’s day, I’ve done something huge. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After dinner, it was time for the awards. Several remarkable
volunteers were recognized – and the best part, they were all the most humble
human beings you can imagine. One of the honorees was the “food cart lady.” I
recognized her because she was there, there for me when I was coming undone. I
was by myself and had just gotten the unexpected news that my tumor had come
back, and my nurse, Kerry, and the food cart lady were comforting me. Kerry was
distracting me with pictures of a lavish NYC wedding she just went to and I
don’t even remember what the food cart lady did or said to distract me, but it
was something, something that helped just a little bit. I went up to her after
the reception and told her how much she helped me that day, and gave her a huge
hug. She told me that volunteering at Dana Farber has changed her life. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The next honoree got up to the podium and started with the
Matthew McConaughey, <i style="mso-bidi-font-style: normal;">Alright, Alright,
Alright.</i> I thought, <i style="mso-bidi-font-style: normal;">Hell ya! This
dude is awesome!</i>...and awesome he was. He volunteers a couple days a week and
has such an incredibly positive attitude. I met him after as well and he was so
nice – he said how impressed he was by me and that my speech was so full of
life. He said it inspired him to get up there and have fun, starting with his
Matthew McConaughey moment. I told him that he rocked it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The final honoree and King of the night that was awarded Volunteer
of the Year and a grant to direct where he so chooses was the one and only
Larry C. Larry C. sits on the Adult PFAC with me and he is <i style="mso-bidi-font-style: normal;">the cutest</i> old man. His legs are always crossed with his hands
sitting right on top of them and he has this look as if he is in deep thought.
When has a thought to share, which are indeed always wise, he raises his hand by simply
holding up his right pointer finger.<br />
<br />
Going into this night I knew that Larry
had lost his wife to cancer several years ago, and he was recently diagnosed
with cancer himself. I knew that he loved to camp in the winter, which we are
all amazed by and think he is crazy for at the same time. And, I knew that he
not only volunteers on the PFAC, but is a Clinical Floor Specialist. He has
selflessly dedicated this phase of his life to Dana Farber. The head of
Volunteer Services and 4 Dana Farber staff members delivered some wonderful
remarks about Larry before he was invited up to the podium. As he headed up to
the microphone I noticed his adorable tie with little tools on it and the
boutonniere that he wore so well as the King of the night. The head of
Volunteer Services and I wondered what he would say because he is just so
humble. Well, he blew everyone in the room away with his grace, sincerity,
selflessness, wisdom, and charm. He spoke about his relationship with Dana
Farber and how it spans about 15 years, as his wife was treated there for about 10 years before she passed in 2008. While at Dana Farber, Larry never called his
wife by her name, he called her Miss America – and that is what the staff came
to know her as too. He loved her so dearly and after she passed and he took
some time to heal, he so courageously decided to enter the next phase of his
life by putting what he learned as a caretaker to use, and helping other
patients. He then mentioned how he is now a patient himself. My heart broke a
little bit. It is hard to put into words how I felt when Larry was speaking. People
like Larry truly make this world and better place, and I can’t even imagine how
proud his wife is looking down on him. But, I am sure, Miss America is not
surprised because she knew what a wonderful man she had in Larry. <o:p></o:p></div>
<div class="MsoNormal">
<br />
At the end of the night I went up to Larry to give him a hug
and congratulate him. In typical Larry fashion he did not talk about himself,
but complimented me on my speech. He put his hand on my arm, looked right at me
and said ever so slowly and poignantly, “My friend turned to me and said, that
young lady is a bright light.” Coming from him, those words meant the world to
me. I could only dream of helping others as Larry has.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br />
I left that night on a high. The power in that room was
tremendous – hundreds of people gathered to celebrate how they have helped
others, and <i style="mso-bidi-font-style: normal;">I</i> was one of them. It has
brought me such happiness and joy to know that I have helped other patients and
caregivers. When someone comes up to me after a speech and says that I impacted
them, <i style="mso-bidi-font-style: normal;">that</i> is the best gift of all. I
always had Nana in me, but I have found where she shines the brightest – when I
am having the courage to be vulnerable and put my story out there so I can help
others. I love you Rosalie Dorothy Timpano. Thank you for the most amazing gift
of all – the gift of helping others.</div>
<div class="MsoNormal">
<o:p></o:p></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com2tag:blogger.com,1999:blog-1595858475106976721.post-6119337766475480822015-06-01T18:36:00.001-07:002015-06-02T08:22:51.042-07:00“Shine Bright Like a Diamond”<div class="MsoNormal">
A couple of months ago I attended the Young Adult Program
Cancer Conference at Dana Farber. It was the first time I was going to an event
like this and, of course, because I’m crazy Becky, I was not only attending, but
co-facilitating a session. The good thing about the session was that I was with
my nurse who is like my Italian motha from anotha, so that was comforting! The
morning started with my session, which was pretty small and we talked all about
the importance of speaking up as a patient. Then, there were some patient speakers
throughout the day as well as former Patriots player, Joe Andruzzi and his wife
– he is a cancer survivor. To this point I found the day to be pretty sad – it
was just a lot. I did make a couple friends at lunch though – a really nice guy
fighting Hodgkin’s Lymphoma and his fiancé. She had come up to me after my
session and said she really wanted her fiancé to meet me because we were a lot
alike – kind of kept our story private and lived as normal as we could. So I
had a nice lunch with the two of them and my Italian motha from anotha. I
started to think…wow he is a lot like me.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
In the
afternoon I attended a session about having relationships while battling
cancer, and I honestly think it was one of the most important things I have
ever done for myself. It was a room of about 40 patients and caregivers opening
up about their feelings and challenges (something so, so foreign to me). The
things people were saying were heart-wrenching, but what stood out most to me
was that I was not the only one out there that was fighting cancer, yet <i style="mso-bidi-font-style: normal;">looked</i> totally normal. A bunch of people
in the group even used the phrase, “coming out of the cancer closet.” I was not
alone, or crazy for that matter! And, you’ll never guess what happened next. I
raised my hand and SHARED MY FEELINGS and…I even CRIED IN FRONT OF OTHER
PEOPLE. Yes, everyone in the room was crying and sharing their challenges, but
the strength in the room was palpable…and I was one of those crying people…I was
and <i style="mso-bidi-font-style: normal;">am</i> one of those strong people. I
left this conference emotionally exhausted and went home and stared at the wall for a while because it took so much out of me. Yes, it was really difficult, but I think it
was the tipping point for me. I had to be okay with my situation and be
confident in it before anyone else could. And when I raised my hand in that
room, tears streaming down my face, the words I said were so, so comforting to
other people there. They were not alone either. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
**<o:p></o:p></div>
<div class="MsoNormal">
<br />
I have
struggled enormously with when to “come out of the cancer closet;” mainly
because I can’t let myself miss a beat and it means being vulnerable. What I
realized that day at the Young Adult Cancer Conference was that missing beats,
crying in front of others, being vulnerable and sharing my story is STRONG and
helps not only me, but others. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
My journey
to “go public” has been a gradual one, that is still going, but each step I
take is honestly exhilarating. My first big break – no I didn’t land an acting
job, but shit that would be awesome. Guest appearance on the next <i style="mso-bidi-font-style: normal;">Orange is the New Black? </i>yes, please. Ha! Anyway, I am obsessed with
Soul Cycle, which you know if you read my blog. So, a couple months back I
contacted the Soul Cycle email box because I saw that people were sharing their
stories about their Soul Cycle journies and where their inspiration comes from.
It took me two months, but I finally put my Soul Cycle story together and
submitted it. She replied right away and said we had to arrange my photo with
my favorite instructor, Sal. I was so excited! I got to meet this mini celeb
(to me, at least)! We got the photo and the story posted a week or so later,
and now Sal and I are buds, a.k.a I high five him after class. If you didn’t
see it, <a href="https://www.soul-cycle.com/community/soul-story-becky-sail/1109/">here it
is</a>. When I hit post with this article on my Facebook page, it was one of
the biggest steps I could have taken! I went public.<br />
<br />
What I really want to talk about is
last Friday night when I spoke to a crowd of nearly 450 people about my cancer
journey – yes, you heard me. AND, I got a standing ovation. One of my great
friends, Tara Shuman recently wrote a book called <i style="mso-bidi-font-style: normal;">Hope is a Good Breakfast</i> about her breast cancer journey. She is an
INCREDIBLE woman and it is an INCREDIBLE book. You must <a href="http://www.amazon.com/Hope-Is-Good-Breakfast-thoughts/dp/0692365494">buy
it</a> and read it! So, Tara organized this amazing book launch event and asked
ME to be one of the keynote speakers. I was not only flattered when she asked
me, but terrified. I knew it was something I had to do, and deep down I really
wanted to do. The good thing was that my journey to go public had been progressing
nicely up to the point of the speech last week and my confidence was building.</div>
<div class="MsoNormal" style="text-indent: .5in;">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
**</div>
<div class="MsoNormal">
<br />
I was at
table number 3 surrounded by the most loving support system – my parents and 5
of my best friends. We were well into the program and Tara had read portions of
her book, which brought most of the crowd to tears, the first speaker, Tara’s
CT tech gave a wonderful speech, and this BRILLIANT doctor was now up there
talking about the importance of cancer research. I was listening to the doctor
and really enjoying her speech, but my mind kept going to my sweaty palms, what
I though was a stomachache (I couldn’t decide), and which side of the stage I
would walk up. Before I knew it, Tara finished an introduction (of me) that brought me to tears, and I
was walking up to the stage. I have always liked public speaking. I get nervous
when I walk up, but then I get in my groove. Let’s be clear here though, I have
never spoken to a crowd of nearly 450 people…about something SO personal. I got
up to the podium, adjusted the mic and started with a joke in true Becky
fashion. I honestly think the nerves faded away after the first paragraph and
then it was like I was in my world. I felt every word I said and the crowd was
right there with me. They clapped, laughed, cried. It felt right. They were with me.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
I ended the
speech with a few words about Tara, that of course, brought me to tears. As the
applause started she came up to give me a hug and a gift, and I turned around to
see the whole room standing. Every single person. I headed back to my table,
careful not to trip in my fabulous 4-inch stilettos and hugged my parents so
tight. I then sat down next to my teary mom and was so surprised by what came
out of my mouth! I turned to her and said, “that was so much fun!” She cracked
up! What a thing for me to say…but really that’s how I felt. That is where I "shine bright like a diamond" – up on that stage. I actually just
looked up the song lyrics to that Rhianna song to see if I could include a
quote from it, but they suck! Same words over and over again, typical.<br />
<br />
When the
event program concluded the amount of people that came up to me was overwhelming
– even the wait staff! They were touched, inspired, and in awe – of me?! I was
so, so happy. I really think that was one of the best moments of my life. I had
exposed one of the most vulnerable aspects of my life and received such a
positive response from the crowd. They didn’t feel bad for me – which was
always my greatest fear – they <i style="mso-bidi-font-style: normal;">admired </i>me.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
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<div class="MsoNormal">
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Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com2tag:blogger.com,1999:blog-1595858475106976721.post-64677677150193360942015-05-05T17:18:00.001-07:002015-05-05T17:19:43.389-07:00The Shit Storm That is Life<div class="MsoNormal">
When I first got my license my mom always said to me over
and over, “I don’t worry about you out there, I worry about the other drivers
on the road.” I always thought, <i style="mso-bidi-font-style: normal;">Yea, yea,
yea I’ll be careful, I’m a cool 16-year-old with my license.</i> <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
***<o:p></o:p></div>
<div class="MsoNormal">
<br />
I have always wanted to coach a girl’s lacrosse team.
Lacrosse is a sport I have loved since the 7<sup>th</sup> grade. I played in
college and still play in a Boston league. This spring I found an opportunity
to coach a middle school team that worked with my schedule – Tuesday and
Thursday evening practices and Sunday games. I was psyched! Of course my
schedule is already jam-packed and I didn’t know how I would take on more, but
‘tis my style. When I asked a couple of my good friends who are live-the-shit-out-of-lifers
like me if I should take it on, they said, heck ya! Needless to say, I have
been coaching the girls with my awesome co-coach since the beginning of April
and it is SO fun and SO rewarding to see them improve. What is not so fun is being
reminded how mean girls at that age can be.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It was brought to my attention that one of the girls on my
team is bullied (in school) by other girls on the team. And bullying these days
isn’t just making someone sit alone at the lunch table or not inviting them to
the mall; it’s pushing someone down the stairs or saying nasty things about
them on social media. Friggin’ crazy! I don’t know who the bullies on the team
are, but I do know who the girl being bullied is. Of course, she is wonderful –
so sweet and innocent and a true hustler on the field. Today, when we were
leaving practice this girl was walking out with another girl and my co-coach
and I asked if they carpool all the time because they live near each other. The
sweet and innocent (bully receiver) smiled and said, “Ya! And it works great
because we are best friends.” The other girl then kind of made a face where her
eyes bugged out of her head. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In that moment I just wanted to fight off the Shit Storm and
change the situation so the other girl truly believed they <i style="mso-bidi-font-style: normal;">were </i>best friends; but, I couldn’t. Will Sweet and Innocent most
likely grow up to be a gorgeous, successful, well-liked business woman, mom,
and whatever else she wants? Of course! But, damn does it suck she has to go
through the awkward middle school years to get there. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
***<o:p></o:p></div>
<div class="MsoNormal">
<br />
What I will come to find out when I have kids – whatever way
is meant for me – is as a parent, you can’t control the Shit Storm. My mom and
dad couldn’t fight off the kids that were mean to me, the sports teams I didn’t
make, the major disappointments I had to endure, the deaths I had to witness,
and the big ass tumor that grew in my body. They had no control over any of
those things – they had no control of all the other drivers out there. What
they could control was how <i style="mso-bidi-font-style: normal;">I </i>treated
others, how <i style="mso-bidi-font-style: normal;">I</i> handled situations, how
<i style="mso-bidi-font-style: normal;">I </i>attacked life…and how <i style="mso-bidi-font-style: normal;">I </i>drove the car. The Shit Storm that is
life will always be swirling around us, but it is how we face it, power through
it, embrace it, love it, feel it, cry through it, and laugh through it that makes
us who we are.</div>
<div class="MsoNormal">
<o:p></o:p></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com1tag:blogger.com,1999:blog-1595858475106976721.post-55080547666119066412015-04-12T17:05:00.000-07:002015-04-13T08:00:16.525-07:00Because I Can<div class="MsoNormal">
I was outside most of the day today because it was the first
nice day we have had after this HELLISH winter. I had my sunroof open and my
music blaring, hand outside the window to feel the air as I drove to the field
for my lacrosse team’s first game (I’m coaching adorable 7<sup>th</sup> and 8<sup>th</sup>
graders). After the game, I quickly got my grocery shopping done and headed
home for a run around the Jamaica Pond. While in the car on my way to the game,
and while running, all I could be was happy. I took a deep breath, smiled, and
looked at the blue sky in appreciation – appreciation that I am here, happy,
healthy, and CAN be coaching lacrosse and running outside. My other favorite
Soul Cycle instructor, Erin, screamed at us a couple of weeks ago, “You keep going,
because you can!” She was so right, dayum all of us riders it that room are so
lucky.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve thought for the longest time that my appreciation for
life has come from my cancer journey – no doubt it partially has, but I
recently discovered something. I was home in Albany and started reading one of
my 11<sup>th</sup> grade AP English assignments. We had to put together all of
our writing pieces from the year and attach an autobiographical them to them. I
titled my project <i style="mso-bidi-font-style: normal;">“Facing” the Facts
Through the Eyes of Becky.</i> Here is the cover:<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyjYLV5wymcanm9FRctx0vo1c_2YQI0sq8adamZQs1UwHFGU-ZMmo6RTiZJUIxOM982-xldfEI640v2ibg2Fp1ZWb4KcnXa-oUngzqO_2AQ-02JCwqdLmB_cfrleKpmXExuyfP_tE4aRI/s1600/IMG_1684.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyjYLV5wymcanm9FRctx0vo1c_2YQI0sq8adamZQs1UwHFGU-ZMmo6RTiZJUIxOM982-xldfEI640v2ibg2Fp1ZWb4KcnXa-oUngzqO_2AQ-02JCwqdLmB_cfrleKpmXExuyfP_tE4aRI/s1600/IMG_1684.JPG" height="400" width="300" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As I read through the project, it was almost eerie. My
16-year-old self was giving my 27-year-old self extremely wise advice. I
structured the project into four sections that described what was most
important to me: Family and Friends, Happiness, Health, and Love. Each section
had an envelope you could open with a quote that complemented it. The
quote for health was, “A wise man should consider that health is the greatest
of human blessings, and learn how by his own thought to derive benefit from his
illnesses.” (Hippocrates) Now that is just crazy, why would I have chosen a
quote like that at the age of 16? It was almost foreshadowing what was to come
in my life!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Here is an excerpt from my Reflection section at the end of
the project:<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">Life is an adventure.
Life is a roller-coaster ride. Life is compiled of a series of tragedies,
thrills, and journeys. Life is only worth living if you live it to the fullest.
Life is full of influences from people and events. Life is about learning to
love. Life should be cherished. Life is precious. Everyday, even when I am
under tremendous stress, I pause to think how lucky I am to be alive and have
such a wonderful life. The trivial aspects of life sometimes bother me, but I
quickly realize they do not matter. In discovering my many faces, I have
learned what is most important to me in life: family and friends, love,
happiness, and health. My family and friends will help me through rough times.
I have not lived unless I have learned to love, my health is essential, and
happiness is what makes life complete. <o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">After compiling
numerous stories of my life, I have learned a tremendous amount about myself
that I never realized before. It is somewhat ironic because it might be assumed
that everyone knows themselves well, but writing about myself was a
self-discovery process for me. I discovered what I truly value in life, and how
I often lose sight of what is most important. After this project, I am
unquestionably going to cherish all I have in life, even more. I plan to live
each day to the fullest. I plan to show more appreciation and love for my
family. I plan to have more confidence in myself. I plan to accept that life is
essentially like a tapestry, and I will experience rough times, which will guide
me to the wonderful ones. Evaluating my past has also enabled me to better
understand many of my personality traits. Before writing this piece I viewed
myself as having low self-esteem and not a great deal of strength. After
evaluating my life experiences and achievements, I came to the realization I
actually possess a tremendous amount of strength, determination, and an ability
to persevere, even in the face of failure...Self discovery is an important
process, and this work has helped me do just that. Most of all, I have
determined that I will never cease to cherish life.<o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I still can’t believe I wrote that at 16…wow. She was SMAHT!
Ha. After reading this I had such an ‘aha’ moment. My appreciation for life
existed <i>before </i>my diagnosis! So my thought that people need to experience
something traumatic to really appreciate life isn't true! (I do think it
definitely helps.) How, at 16 was I so wise? I think a large part can be
attributed to my parents. Mom and dad taught me everything I know, and I am who
I am because of them. They taught me how to treat people, how to love, how to
laugh, how to… live. In my Reflection I wrote: <i style="mso-bidi-font-style: normal;"><o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">Not only have I
discovered who I truly am, but who I want to become. The person I strive to
become has been modeled by the adults I admire most in my life. Among these
people are my parents, my Aunt Lorri, and some of my teachers who have deeply
impacted me. I have received all of my morals from my parents; morals and
values I plan on maintaining and only making stronger in the future. My parents
are loving, compassionate, strong, kind, and caring human beings; I can only
hope to become half the people they are. My Aunt Lorri is strong, determined,
and compassionate, and I hope to have her strength when I face obstacles. Some
of my influential teachers have taught me to have a strong work ethic and to
have confidence in myself as a student. In particular my math teacher this year
has demonstrated to me that I must believe in myself in order to succeed. I
recognize that I will not have the capacity to embody the personality traits of
all these people; however I only hope that I can take a part of all of them
with me as I mature, and become the best person I can be.<o:p></o:p></i></div>
<div class="MsoNormal">
<br />
Thanks Ron and Sue for being such amazing parents, and Aunt
Lorri for showing me what strength is in my most influential years of life. YOU
prepared me for what was thrown at me down the road.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br />
The other thing that the oh wise 16-year-old Becky had was a
tremendous amount of self-awareness. I truly feel that this is so, so important
in life. It is important in relationships, your job, challenges you face, and
pretty much everything! It molds how you respond to situations. I think my
constant quest for self-awareness and discovery has helped me persevere through
my medical journey. I continue to always try to be the best person I can be. I
go to yoga and Soul Cycle, coach middle school girls lacrosse, co-chair the
Patient and Family Advisory Council at Dana Farber, read to a little girl at
lunch time every other week at the elementary school down the road from work…<i style="mso-bidi-font-style: normal;">all because I can.</i></div>
<div class="MsoNormal">
<o:p></o:p></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com2tag:blogger.com,1999:blog-1595858475106976721.post-23595782461756321072015-03-23T06:19:00.000-07:002015-03-23T06:19:04.238-07:00Don’t Mess<div class="MsoNormal">
Today is what I call “MRI Day.” What is MRI day? MRI day
happens every four months, (used to be every three) and it is almost a full day
at the Brigham and Dana Farber to check the size of Frank. I start with a 7:40
a.m. MRI, (7 a.m. arrival) then 10:15 labs, and 11:30 results with the doctor.
The doctor normally runs up to two hours behind so there is a lot of waiting.
Today was the first day I brought my laptop, which I am really happy about
because I NEED to write. My fingers are currently slamming on the keyboard in
the Dana Farber cafeteria. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Alarm went off at 6:15 and I whined as I heard it, knowing
what today was. I also woke up in a weird mood because I had one messed up
dream about an ex from college and another disturbing dream I can’t remember.
One of my medicines makes me have messed up dreams – I mean things I would
never, ever think. I threw on some comfy clothes and my lucky jewelry –
grandma’s watch, my cross bracelet, breathe bracelet, purple sarcoma bracelet,
and lucky elephant earrings (thanks Lauren <span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span>).
I could kind of tell walking out of the house that I was in one of those
on-the-war-path moods. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I go to these days by myself now because it is just easier
and the tumor has been stable for almost a year? I think? I have my routine
down – I know which MRI machine I like, where I like to get breakfast, what
questions to ask, etc. My on-the-war-path mood was confirmed when I got my
sheet to fill out at the MRI place. On the back they make you list out your medications,
which always pisses me off because I have so many and I know they are on my
chart. So, today I wrote, “you have these listed on my medical chart, not
writing them out.” BOOYA! They call me to get changed and I have to put on the
gross hospital pants and gown. I lock up all my stuff and I was off to get my
IV put in (need it for the contrast injection during MRI). The girl asks the
typical, “Which arm?” and I say the typical, “Doesn’t matter, I just have small
veins.” She looks around and decides on my left arm – for some reason I could
tell she wasn’t going to be good. Yes I have small veins, but they are great
veins and if you are good you get them right away. No second shot! (Learned
that from my momma!) I never look at the needle because I just don’t like to…so
I feel the prick and then she is friggin’ fishing around in there. Then she
says, “Your veins don’t like needles, huh?” And I said, “They do, they are just
small.” Again, I KNOW that my veins are great, you just can’t see them. At this
point I think she saw and heard my sigh/eye roll as she was still fishing
around. She said, “Sorry.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The damn needle was finally in and the girl came over to
bring me to the MRI. Needle pokes and fishing are no big deal for me now, but
again, the mood. So the girl starts walking me down the hall and I say, “Music,
right?” She tells me that I am in a different machine and they don’t have music
there. I have had probably seven MRIs at Brigham and I specifically go to a
certain location because the machine is slightly bigger and they have music. <i style="mso-bidi-font-style: normal;">Poke #2 to the bear’s routine.</i> <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I lie down on the MRI table and they start to hook up all my
shit. Earplugs, contrast to IV, big heavy thing over pelvis, and emergency
squeeze ball in right hand – I know the drill. The helper dude introduced
himself and I thought to myself wow, good job, just introducing yourself makes
you feel like a person to me, and me feel like a person to you. Thanks, Dave? …Don’t
remember his name ha. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The MRI is normally about 45 minutes. The girl told me that
if I needed other headphones for the loud noise to let her know. The thing is
pretty damn loud and I normally have extra headphones for the music. We start
with a few pictures and some breath holds, and it’s wayyy too loud for me. I am
thinking, <i style="mso-bidi-font-style: normal;">ugh I should ask for those
extra headphones but I don’t want to. It’s too much effort to speak up and I
don’t want to be a pain.</i> Then after two more pictures of loud ass noise in
my ears I thought, <i style="mso-bidi-font-style: normal;">you are the patient
and you can ask for whatever you friggin’ want. It is their job to listen to
you and your needs.</i> I spoke up. She came in and gave me the headphones, no
problem. I consider myself a VERY outspoken person, and I ask a ton of
questions about my care, but I am still working on noticing those times when I
am reluctant to speak up. It’s just so hard as a patient. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The MRI actually went by pretty quick today. Yes – I just
said one positive thing! We get to the end and she injects the contrast, which
makes you feel like you peed your pants. A few more pictures and<i style="mso-bidi-font-style: normal;"> </i>they came in to get me out. The nurse
starts taking out my IV and I said that I needed to keep it in because I am
headed to the Farber for blood work. She quickly says, “You can’t keep it in.
It’s contaminated. They should never do that – the labs could be wrong.” I told
her that they have done it every time. She reassured me that it is not ok. I
believed her, but then thought, <i style="mso-bidi-font-style: normal;">are you
fucking kidding me that you are the first person correcting this? So all of my
other labs have been wrong? NOT ok. </i><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I get back to the changing area and while I am waiting for
another woman to get out, this lady starts chatting with me. Tells me her
sister has cancer and I told her I have a pelvic cancer and she is in a great
place, blah blah blah. She then starts to say that she has had a hysterectomy
and has some bleeding. She wanted to know if I had that and thinks maybe she
has what I have. <i style="mso-bidi-font-style: normal;">OMG seriously…you don’t
have what I have because of your damn pelvic bleeding lady. I am not in the
mood for this. </i>I know everyone’s problems matter but this is me, and my
mood today, in all its honesty.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I headed to Au Bon Pain for breakfast because they have
better breakfast sandwiches than the Farber cafeteria. A quick call to my mom
to bitch, then I was off to the Farber to grab a spot in the caf where I am
now. I could really do without the TERRIBLE elevator music and “inspiring”
stories around me on the walls and TVs today. I saw one of the heads of
hospital in the cafeteria that I work on the Patient and Family Advisory
Council but I pretended not to see him all three times he walked by. Just not
in the mood. Can’t mix patient time with patient advocacy. Too much. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ll be here all day ladies and gentleman…no, really ha.
Hopefully the rest of the day goes smoothly, we shall see.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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Don’t mess…<o:p></o:p></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com1tag:blogger.com,1999:blog-1595858475106976721.post-27822476698339523982015-03-01T17:51:00.002-08:002015-03-01T17:51:29.146-08:00Recovery X2 (Part 2)<div class="MsoNormal">
I just ate pizza! Wahoo! I made it really soft in the
microwave and cut it into tiny pieces and then used the roof of my mouth to
maneuver the piece to the back of my mouth to lightly chew. VICTORY IS MINE! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So this was the scheduled hospital time – my tongue surgery
last Wednesday. A lot of us cancer patients always have another bizarre thing
wrong with them, well mine is in my tongue. I have a benign Arteriovenous
Malformation (AVM) on the under side of my tongue. I noticed it in fifth grade
and it slowly grew with my age. Docs had been watching it over the years and
confirmed it was benign, but would grow with age and change with my hormones.
It started to give me jaw problems and on some days it would swell and affect
my speech, so I decided it was time to take care of it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Boston Children’s Hospital is the place to go for these.
Their Vascular Anomalies Center is world-renowned. The plan was to do
sclerotherapy on my tongue, which basically means they do an angiogram to see
were the blood is flowing and inject my tongue in different places to clot the
weakened vascular walls. When I finally made the appointment for this procedure
I couldn’t sleep because I was trying to maneuver my tongue in all different
ways to make it feel 2-3 times the size. The docs said it would swell to at
least 2-3 times the size, and I would be in the hospital anywhere from 1-10
days – if 10 days then time in ICU. That’s not a big range or anything!! My
doctor called it the “tongue party” because it is very unpredictable how much
it will swell.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
***<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Parental units arrived to my condo the night before surgery.
My dad had his foam pillow and my mom had a ton of presents for me including a
new monkey – Cooper! We watched a little of <i style="mso-bidi-font-style: normal;">The
Voice</i>, I briefed my parents on my typed document with all my doctor info,
(I get anal before surgeries; I guess that’s how I deal) and then we caught
some zzzz’s. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
To be honest, I wasn’t all that nervous for this procedure,
I think mostly because I was hungry, (couldn’t eat the morning of and it was a
1:30 procedure) and I just didn’t have the energy to be nervous. The recent ER
visit took everything out of me and I had no choice but to just go with it.
Also, I unfortunately knew the drill. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We waited for about 20 minutes in the Interventional
Radiology reception area with <i style="mso-bidi-font-style: normal;">Dora the
Explorer</i> on TV and the tiny kids chairs with baby tennis balls on the
bottom of them. Mom and dad were sitting and I was pacing in true anxious Becky
fashion. The nurse then took me back to get my vitals, ask me a bunch of
questions, and put on my gown and those gross hospital socks they give you.
Then the fellow came over to talk me through the procedure and the doc came to
see me too. I felt…calm?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Mom and dad came back and the anesthesia team came to see
me. I, of course, asked for several “cocktails” and they assured me I’d get
them. The anesthesia resident with the biggest rock I have ever seen (almost
ugly because it was so big) put in my IV. Before I knew it, it was time for my
cocktail. These things are great, you instantly feel drunk (?) but the best
happy-feeling drunk. I think I kissed my parents and they wheeled me into the
room. I was much more alert for this than my other surgeries. I moved onto the
OR table and had to put my head in this circular foam thing. They gave me some
oxygen, put a blood pressure cuff on that was tight for too long, and told me
to think of a nice place. SEE YA. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
***<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">Beep, beep, beep.</i>
“Becky, Becky…” It was over and I was awake. I immediately checked my
surroundings and I seemed to be in recovery and had no tubes in my mouth or
anything. My tongue was really swollen, but I felt more alert than when I woke
up from my other surgeries. <i style="mso-bidi-font-style: normal;">Where are mom
and dad?<o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A few minutes later mom and dad came in and said I did
great. Mom gave me Cooper and he immediately went between my chest and my chin.
My mom told me the doctor said it went great and it was a “textbook tongue.”
The fellow came to see me a few minutes after that. The doctor couldn’t come
because he was busy at a reception getting an honorary degree, ha! These
doctors are unbelievable. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I started with a red ice pop with a towel wrapped around it.
The pain wasn’t really that bad. It was just the swelling and numbness, granted
they were giving me IV pain meds and steroids. After shift change/a couple
hours later I got to my closet of a room. The floor docs came in to see me and
it turned out I worked with one of their wives. Small world! They said they
wanted me to stay overnight because the swelling could get worse day two or
three. So mom and I were hunkering down for the night and dad went home to my
condo. Mom had to sleep on this chair turned bed thing.<span style="mso-spacerun: yes;"> </span>At first it was too far for me to reach her
hand through my bed rail so I made her move closer so I could reach <span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span>. My nurse was a doll,
his name was Bong and he took care of me all night and tried to be quiet when
changing my IV meds. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The next morning I was ready to go! I literally did a little
flailing dance in my bed because it was so different to have surgery where I
could move my whole body. The fact that I’ve had three major abdominal
surgeries actually helped with this recovery, because my perspective is
probably different than the average person. This was a walk in the park. Would
I have opted to not take the damn walk if I could have? Yea, but what are you
gonna do. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Mom and dad got me home and in bed for a nap, while mom made
me homemade soup. It was so nice to have them taking care of me because the ER
experience was so awful :/. Mom woke me up during the night to give me my meds.
The next day mom and dad cleaned the crap out of my condo and hit the road.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Recovery…soup, pudding, painkiller, applesauce, antibiotic,
sleep…repeat. Each day my tongue is less swollen. If that is anything I know
about recovery, each day gets a little easier. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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<div class="MsoNormal">
I hope that I don’t see the inside of a hospital again
anytime soon…<o:p></o:p></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com0tag:blogger.com,1999:blog-1595858475106976721.post-83786138583962579872015-02-28T17:50:00.002-08:002015-02-28T17:50:45.640-08:00Recovery X2 (Part 1)<div class="MsoNormal">
I haven’t written in a while because, well, I have been
recovering x2. One of these recoveries was planned, and the other was not. What
I have learned about myself is I can’t really write during recovery; I just
need to focus on getting better. As I look around my condo full of flowers from
my amazing friends and family, I am so appreciative of their generosity, but I just
can’t wait for the glum recovery phase to be over.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
***<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
About two weeks ago, I went in for an appointment at Dana
Farber. The appointment was to get labs done and then my Zometa infusion – the
medicine for the bone loss the Lupron and Letrozole have caused. I had a really
tough time making the decision about going on the bone drugs or not, but
finally came to the conclusion that my life is more important than an unborn
child right now. (My main reservation about taking the medicine is that the
doctors don’t know how it affects children. I likely can’t have them but always
hold onto a tiny bit of hope.) <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After waiting an hour for labs to come back and meeting with
a woman who coordinates the Young Adult Cancer Program at Dana Farber – cause I
need to get more involved ha – I was back up on the sixth floor for my Zometa
infusion. Most people take a pill form of these bone drugs but because of my
acid reflux they said they would give me this one-time infusion. Great! My
nurse Kerry (WHO I LOVE) comes in and we chat it up about boys, her new Anna
Beck jewelry from the boyfriend, and shoes, of course. She puts in my IV and
sets up the 30-minute infusion. The doctors told me that the only potential
side affects were MILD flu like symptoms for the first 48 hours and I really
shouldn’t worry about it. So I get my meds, pack it up and head into work. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Later that night I was living the typical single life,
picking up dinner at Whole Foods. I started having this weird chest pain, but
just ignored it and thought it would go away. I get home and can’t even finish
my dinner. The pain was pressing so hard on the front and back of my chest that
I would grunt when I tried to breathe in and out. Then came the chills…I just
couldn’t warm up. I put on that new Nicholas Sparks movie, <i style="mso-bidi-font-style: normal;">The Best of Me</i> and just tried to get into bed. <i style="mso-bidi-font-style: normal;">It would just go away, right? I don’t need this right now.</i> I called
my parents because I started to panic and well then, they did too. After about
an hour of chest pain and my mom calling me every five minutes I started
hysterically crying because I realized I needed to go to the ER. Fuck. That
moment when you realize you have to go to the hospital? It just sucks. My
parents and I suddenly shifted into panic mode and were trying to quickly
figure out who could take me to the ER. I didn’t want to go in an ambulance. I
texted my wonderful neighbor downstairs and he immediately came up. I was
already dressed with my winter hat on, hysterically crying, gasping for air,
and snot all over my face. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My neighbor got me right in his car and drove me to Brigham
and Women’s Hospital. While trying to breathe, I was sending my parents phone
numbers for my doctors and friends so they could come be with me. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We pulled into the ER and my neighbor asked if I was okay to
walk in. I said, “yes, yes.” The minute my feet hit the pavement, everything started
to go fuzzy and dark and I got hellishly dizzy. Then, noodles. My legs were
noodles. Luckily I was able to grab onto one of those large silver poles where
you pull up to the ER, so I didn’t go down. I started screaming my neighbor’s
name and full on panicking, hanging from the pole. My neighbor jumped out of
his car and came to help me, while some guy slowly walked up behind me with a
wheelchair and casually asked if I needed it. Yes I fucking need a wheelchair;
I just collapsed IN FRONT OF AN EMERGENCY ROOM. AREN’T YOU SUPPOSED TO HELP ME?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
They wheel me in and some miserable woman asks for my blue
medical card, with NO urgency. Meanwhile, I was shaking, crying, gasping, and
all of the above. I rifle through my purse and yank out the card, mumbling under
my breath, “of course ‘cause this is fucking America.” Yeap – I was upset. Then
they ask me if I have been to Africa and finally bring me into a room to get
vitals. This nurse with a bad dye job and a scrunchy, yes a scrunchy, asks me
about every medicine I am on which takes forever to go through. I try to tell
her that I have Sarcoma and think I am having a reaction to a medicine. Bruce –
the medical assistant is in there too with a smug look on his face, chomping on
his gum, and not even cracking one leak of compassion. I even tried to joke
with him about my bear named Bruce – but nothing. After that I got to spend
even more time with Dick, I mean Bruce, as he hooked me up to an EKG. It is
highly uncomfortable having an asshole man you don’t feel comfortable put
monitors on your boob. When he was finished I said, “do I need to keep the
leads on?” He says, “Those aren’t leads, don’t believe everything you see on
TV. And yes, keep them.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After the EKG, I thought they would bring me right back. I
mean I was having extreme chest pain and trouble breathing! Right back is not
where I went, I went to the waiting room for TWO HOURS. The ER is probably one
of the worst places on earth. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Shortly after my EKG my BFF Jennie came to relieve my
neighbor. Did I mention the ER is the worst place ever? Everything takes
FOREVER. After finally going back and getting a bed, they put in an IV and took
labs. Two hours to get those back. Then they wanted to do a chest CT – oh and
had to put in a different IV because the first one was in the wrong place,
excellent communication ER staff. Two hours for the CT results. They were
pretty sure I was having a rare reaction to the Zometa but had to rule out a
blood clot or PE. Oh, and when I say rare reaction to Zometa I mean my expert
doctor had to look up case studies for this reaction. SERIOUSLY, BECKY? YOU ARE
HELLA SPECIAL! Six a.m. rolls around and THE amazing Jennie is still with me.
The doctor comes in and says they saw a spot on the chest CT that could be
something or “just an artifact,” and they want to do another type of chest scan
and a leg ultrasound to be sure. At this point I had to let out a little cry
because I just wanted to go home and wanted my parents who couldn’t get to me
because there was a BLIZZARD that was about to start. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Another two hours later and they transferred me to
observation, which is between the ER and getting admitted. At this point the
fever started and Jennie and I were eating sub-par breakfast sandwiches from
the hospital cafeteria. At around 10 a.m. Jennie was relieved and Ryan and
Amanda came to take the day shift. (I don’t know what I would do without my
amazing friends). Amanda took over secretary duty from Jennie and talked to my
mom and doctors as I was in and out of sleep. Each time I woke up “transport” was
there to wheel me (on my stretcher) to the next test. Finally after everything
came back negative they determined with certainty I had a terrible reaction to
the Zometa. My endocrinologist felt terrible and was baffled by the reaction I
had. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By 5 p.m. on Saturday (I went into the ER 11 p.m. Friday)
Amanda and Ryan had me back at my condo to rest. It was recovery time. Tylenol
every four hours for the fever, fluids, and lots of sleep and TV for three
days…<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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<div class="MsoNormal">
And here I am two weeks later on the couch recovering
again…to be continued…<o:p></o:p></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com0tag:blogger.com,1999:blog-1595858475106976721.post-53546733249497043592015-02-11T18:53:00.003-08:002015-02-11T18:57:32.631-08:00Laugh Always<div class="MsoNormal">
Thanks Momma for inspiring this post and reminding me of a
hilarious story from one of my surgeries. As much as I have cried, screamed,
pouted, you name it, I have laughed MORE! Laughing, crafing (crying and
laughing – my friend Jennie and I named it), whatever! – it’s what gets me
through and lifts me up. Here are some fun stories of laughter.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
**<o:p></o:p></div>
<div class="MsoNormal">
I was recovering from my first surgery at home in Albany. I
spent most of my time in my dad’s recliner because it was THE only thing that
felt comfortable. I couldn’t lay flat in a bed and would have to sleep in the
chair. My family would have to help me out of bed, down the stairs, into the
chair, and into my nightgowns (yes this was all I could wear for weeks and
those AMAZING stretchy hospital underwear). This help also included showering
me. I couldn’t bathe myself and just standing in the shower for five minutes
took all the energy out of me. It was a huge task to go upstairs and clean my
little tushy. Well, one day when my sister was bathing me, (thanks Allie <span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span>) I noticed how heavily
she was breathing – she has allergies so tends to breathe heavy, but since she
was so close to me it sounded like a rhinoceros! I said, “You are breathing
like a rhinoceros.” Next thing you know we were both CRYING laughing. I was actually
crafing because laughing hurt like hell with the pressure of the 32 staples
down my tummy. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
**<o:p></o:p></div>
<div class="MsoNormal">
After my third surgery I was back at my old apartment in
Boston with my delirious mother. Delirious because she never left my side in
the hospital and brought me back to life. I was relaxing – or trying to – on
the couch and of course my mom was running around the apartment cleaning
anything and everything she could find. My mom could find dust where dust
doesn’t exist. All of a sudden I see her with the Swiffer and she slips and
does a full out split. I started cracking up which then turned into grabbing
the pillow for my belly and yelling at her because it hurt so much! She was
rolling around on the floor laughing too.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
**<o:p></o:p></div>
<div class="MsoNormal">
Panic attacks happen. They actually happen a lot on my drive
home from work, which is definitely not the best time because I am DRIVING a
“potential death machine” as my mom called it when I first got my permit. They
happen on my way home because I have likely been holding in my emotions all day
at work. So it basically starts with hyperventilating, my whole face tingles,
then comes the crying, then comes the muscles getting all tight, and the anger
and the flailing in my seat and the screaming. At some point during all of this
I call my parents. Sometimes my mom is so upset to hear me upset that she says
hold on and throws the phone at my dad. SOMEHOW he manages to make me laugh by
saying the stupidest thing!! “So I saw Casey M. working in Stewart’s can you
believe that. He dropped out of college.” What?!! So random of my dad to say –
Casey graduated high school with my brother but was always a little bit of a
question mark as to whether or not he would go to college or just end up
staying in our home town. The randomness made me laugh and completely
distracted me. I did my little I am still crying but also laughing and you are
ridiculous laugh/grunt thing. Thanks, Datty. (My dad has many names – Little Ronald,
Faja, Datty, Mr. Sir…)<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
**<o:p></o:p></div>
<div class="MsoNormal">
My second surgery I had this adorable redheaded Irish nurse
for one of the night shifts. Her name was Mary and she was just a gem. As with
every nurse, my mom (a nurse) watched her every move. Some got the evil eye,
but Mary was a keeper, she got an A. It was probably somewhere around 3 a.m.
when Mary came in to give me my heparin shot (blood thinner shot into my thigh
that stings like a biatch). Mary tiptoed in and explained what she was doing in
her little Irish whisper. My mom was sleeping on the chair to my left. Then,
poof, my mom was up and at ‘em standing right next to Mary, like the sneaky guy
with the foot fetish in the movie <i style="mso-bidi-font-style: normal;">Mr.
Deeds.</i> Mary got very startled and in her Irish brogue said, “Oh, I didn’t
even see ya there.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
**<o:p></o:p></div>
<div class="MsoNormal">
Surgery number two, back at the apartment again with my mom
recovering and I was on the toilet – sure you wanted to know that. The reason I
tell you that is because from the toilet I could see into my bedroom. (I was just
peeing for the sake of this story, don’t worry. My mom would help me onto the
toilet then leave me alone for a few then come back to help me off. Dignity,
shmignity.) I look up and there is my 50-something mother trying to walk around
in a pair of my three-inch Nine West stilettos. Okay, now let me define what
trying to walk in these looked like – she could barely lift up her feet, was
wearing her pajama pants that always manage to shrink and look like flood
pants, and was concentrating very hard. I said, “WHAT are you doing?” We both
looked up at each other and starting crying laughing. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
**<o:p></o:p></div>
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<div class="MsoNormal">
Those are just a few stories of laughter for now. One note I
have to end with is that my dad is very attached to his recliner I mentioned –
it is his buddy. Of course he didn’t think twice about giving it up for me for
a month because it was all I could get comfortable in, but I know he missed
that thing like a fat kid misses cake. When I was starting to feel better and was
able to get comfortable in other places, I came downstairs one day and there
was a piece of paper taped to the recliner that said “Eviction Notice. This
chair is now being returned to the care of Ronald A. Sail.” Very funny, Datty! <span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span> <o:p></o:p><br />
<span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;"><br /></span></span>
<i>Being that it is February 11th, I have to give a Happy Birthday shout out to my one and only rhinoceros, my sweet chinchilla, my other half -- Allie Wik.</i></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com1tag:blogger.com,1999:blog-1595858475106976721.post-11407019970866830782015-02-01T10:04:00.002-08:002015-02-02T08:15:43.947-08:00The Receiver <div class="MsoNormal">
I was in seventh grade and was going through that awkward
middle school stage with friends. I was trying to fit in with the “cool crowd,”
but was too naïve to realize they were treating me like shit. To my mom, it was
very obvious, but I unfortunately had to learn it on my own. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I remember I had a group of the girls over to my house and
we were planning Christmas presents for each other, secretly whispering to one
what we were getting the other. The next thing I knew they were all faking
stomach aches and called their moms to go home. I was so disappointed and
didn’t understand what I had done. While they were there I had told one that I
got another this awesome Clinique lip gloss set and she promised to keep it a
secret. I was so excited about this gift! It was the brand-new sparkly Juicy
Tube set.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The next day at school, the girl I was giving the lip gloss
set to came up to me in the cafeteria and said, “Becks, I have a lot of lip
gloss.” I was so upset. Not only had my other friend broken my trust, but this
friend didn’t like the gift I was going to give her. As soon as I walked in the
door after school that day, while I was still throwing my backpack on the floor
and yanking off my coat, I said to my mom, “I have to get her another present.
She said she has a lot of lip gloss.” In my young, naïve mind I didn’t see the
immaturity in the situation and that these girls were not being very nice to
me. That was when my mom drew the line and she said, “Becky, you are <i style="mso-bidi-font-style: normal;">not</i> getting her another present. The lip
gloss set is a very nice gift.” I stormed upstairs and slammed the door and the
pout session in my room commenced. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
***<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although seemingly very trivial, this story is actually
fairly significant. It was the first time I learned the hard “receiver” lesson
and that you need to pick and choose your friends and the people you surround
yourself with wisely. Now that I am 27, I think I have learned quite a bit
about this lesson and have surrounded myself with amazing people. Unfortunately, it
is a lesson that takes a lifetime to learn and there are always going to be
people that disappoint me. The thing is, I see the best in people and I am just
hoping for them to respond they way I want them to – or the way <i>I would. </i><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In my last post I talked about having confidence when
telling my story; which I have learned is SO important. But, here is the thing,
who am I telling that story to? <i style="mso-bidi-font-style: normal;">Who is the
receiver?</i> <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is a very complicated question for me because I have a
hard time telling my story to begin with – so, when do I tell it? To who? The
rule of thumb that I have come to follow is, I tell it when I am ready, and
feel comfortable telling it (to the receiver). In the past I have “let the cat
outta the bag” and received a horrifying response. One particular time I can
remember I wanted to just puke and run away. The person made a joke, was
completely insensitive and made me feel like an idiot. He was obviously too
immature to handle the information and I had not built the relationship with
him that I thought we had. Looking back at the situation, I now know that this
receiver was not ready, if ever, to receive this information. I wanted him to be,
feel and act in a way that he was not capable of. I wanted to return the lip gloss
set, buy a different present, and hope for the response I expected. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I recently told my story to two different co-workers. After
knowing both of these people for a good amount of time, I got to know what kind
of people they are, what they stand for, how caring they are, and was confident they would respond positively. <i style="mso-bidi-font-style: normal;">I
chose correctly.</i> The first individual simply said, “I know I am supposed to
feel bad for you, but that isn't my instinct here. You handle this so
incredibly well I just want to say that I am amazed.” That really made me so
happy because that is how I aim to live my life. Look fab, exude happiness, kick
life in the ass and oh, wait there is that thing going on in the background. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The second individual was just so great. I knew she would be
because I just felt that comfort level with her. To be honest, I didn't even
get the sweaty palms, heart racing anxiety before telling her. She is already
one of my biggest supporters; wanting to come to any speaking engagements I
have, help me with my volunteer efforts and read this blog <span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span>.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Everyone goes through the “receiver” lesson with friends
from middle school, to high school, well into their adult years. I now realize
even more so why it is important to surround yourself with amazing people. Life
happens. The <i style="mso-bidi-font-style: normal;">right</i> receivers won’t
even flinch when you tell them something serious and will do everything they
can to support you.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">Note:</i><b style="mso-bidi-font-weight: normal;"> </b><i style="mso-bidi-font-style: normal;">To
the girls involved in the lip gloss “thing” if you read this I love you dearly.
We were in middle school </i><i style="mso-bidi-font-style: normal;"><span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span>. Thank you for the
lesson and you are among my biggest supporters today – and I of you. </i><b style="mso-bidi-font-weight: normal;"><o:p></o:p></b></div>
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Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com3tag:blogger.com,1999:blog-1595858475106976721.post-40637306336211693402015-01-19T18:01:00.003-08:002015-02-01T10:05:18.212-08:00Confidence in Weakness<div class="MsoNormal">
I’ve been wanting to write for days now and all of these
ideas have been floating around in my head, but I just couldn’t put my fingers
to keyboard. I had a feeling after Soul Cycle tonight with Sal I would have the
urge, and what do ya know?! I think Sal is my muse. He was on a "breaking down
walls" kick tonight, and realizing your own strength, which only comes with
facing challenges.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have always had a tough time being weak, I swear, since
I came out of the womb. I have this thing where I feel like I need to put on a
strong face for myself, and for everyone around me; but why? What I have
realized is if I don’t break, fall, and even sometimes wallow, I can’t get to
that strength on the other side of the wall that Sal talks about. There is SO
much strength in weakness – it is actually beautiful. I am still working on
accepting that and being confident about it. I will always be dealing with what
I have, accepting it, fighting it, but <i style="mso-bidi-font-style: normal;">I
have to find confidence in my weakness</i>. This (Aggressive Angiomyxoma) is
what I have and who I am, like it or not! I am very good at having that
attitude with other things in life, but not with my Sarcoma. If I am secure
with my weakness, when I tell someone for the first time, their reaction will
be so much better. It’s like when you make a big deal out of something, it naturally
gets other people all worked up, right? Well, if I am confident when telling
someone story, it will put them at ease, and I think, even elicit a different
reaction. One of my GREATEST fears is telling my future husband (<a href="https://www.youtube.com/watch?v=-JVeFRRLdAc">where is he?!</a>)
what I have. But heck, this is me and I need to own it. And, to be honest, I have faced much worse in
life than having to tell someone what I have going on.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Tonight I want to share a little excerpt from something I
wrote several months back when I thought I was going to write a book – ha! That
got too daunting when I was five pages in and only on day two of the hospital
stay of my first surgery. Here is a snippet, which is by no means complete and I keep editing.
This is me being confident in my weakness – and all it’s glory!!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
***<o:p></o:p></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><br /></i>
<i style="mso-bidi-font-style: normal;">First surgery: October 26, 2010.</i></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><br /></i>
<br />
<div class="MsoNormal">
My mom drove me to the hospital that morning and my dad,
brother and sister planned to meet us there. I will never, EVER, forget that
morning, nor will my mom. I had to be there at 5:45 a.m. because I was first
case. It was dark outside and I think I was crying as my mom held my hand the
whole way there. To this day I get anxiety when I drive past the exit we got
off for the hospital. <o:p></o:p></div>
<div class="MsoNormal">
<br />
We got to Admitting and I had to get undressed, put on a
cap and gown, and this weird blanket. I was on a gurney with curtains to my right and left. It was
weird and looked like the TV show <i style="mso-bidi-font-style: normal;">Mash. </i>A
nice nurse came over to put in an IV and check my vitals. I think I was crying.
My blood pressure was something outrageous like 160 over 90. I generally have textbook
blood pressure. I was terrified – a fear a can't even describe. My mom kept holding my clammy hand.
Next, the anesthesiologist came in and introduced herself and said she was
going to give me some “cocktails” to calm me down. She gave me one into my IV
and I instantly said, “It’s not working. It’s not working!” So they gave me
another. After some questions and paper work, the nurse anesthetist came over
and said, “Are you ready?” I was not ready. I felt like I wanted to scream, cry, jump out of my skin and escape all at the same time. I looked at my mom with tears streaming down my face
and she gave me a huge hug and a kiss as they started to wheel me away. The
last thing I remember is bright lights and seeing Dr. Albany (his nickname) come in with a
Halloween surgical cap.</div>
<div class="MsoNormal">
<o:p></o:p></div>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was awake. I felt like I could barely move and my mouth
was dry. There was a nurse there asking me things, so I realized I must be
in recovery. My belly was sore and I was in and out. I would open my eyes for a
little and then closed them for a bit. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My sister, mom, and dad came in to see me. I later found out
they got special permission to come see me in recovery, thank God. I was so
scared. My mom was talking to the nurse. “She has not output! She has no
output!” I didn't know what that meant at the time, and I was too groggy and
tired to care. My sister came over and held my hand and I turned my head slowly
over to her barely getting the words out, “My nurse is a bitch.” Surgery or no
surgery – feisty Becky was still in there! My family kissed me goodbye and said
they would see me when I got to my room. What seemed like a few minutes later,
someone wheeled me to a room. I got there and no one was in there…minutes
passed…I think? I managed to feel around for the call button (even though my
mom hadn't Cloroxed it yet) and pressed it. Some dude came in and said, “Oh, we
didn't even know you were in here.” I didn't have the energy to say anything.
Finally my family came in. They were talking about how they got my room
mixed up or something.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My surgery was about three hours. Dr. Albany opened me up and what he found was even worse than he anticipated. The “cyst”
was, as he later stated, “the size of a baby’s head.” We told him how Dr. Dick (a
jerk doctor I had in Arizona) said the pressure I was feeling was “in my head”
and he challenged us by saying, “no, no it was the size of your head.”<span style="color: #c0504d; mso-themecolor: accent2;"> </span>While I was open on the
table they did a frozen section to see if it was metastatic cancer. It came
back negative, thank God. If it was positive he would have had to remove the
tumor and all of the neighboring organs, which would have been the whole
enchilada – uterus, ovaries, bladder, rectum, part of my colon? <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dr. Albany was completely perplexed by the consistency of
what he found. He knew when he saw it that it was not a cyst and that it was
some sort of tumor. He called in the pediatric surgeon to see if he knew what
it was. No luck. The whole hospital was stumped. Since the frozen section did not come back positive for
cancer, his goal was to get out as much of the beast as he could, without doing
any permanent damage to me. I later learned the medical term for this is
attempting to have a “low morbidity rate.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
They tried for over
an hour to get it out and just couldn’t get it. I was opened up vertically
down my abdomen from above my belly button to way down south (it is called an
exploratory laparotomy). After surgery I was asking my mom (a nurse) if they had
retractors in me to <i>really</i> open me up and she just said to stop asking those
questions. They were about to prep me for a posterior approach (in addition to
the front), which would have meant they would have flipped me, taken out my
tailbone temporarily, and gone in my backside, when Dr. Albany said lets try
one more time. It was in that moment that I think my Pop-Pop, who had just
passed away a month before, was my angel in the room. Dr. Albany tried one more
time and he got it. He got out what he could and closed me up. Thirty-two
staples down my abdomen.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When my family finally got to my hospital room they all sat
around me and my sister put something soft on my chest. It was a stuffed monkey
that she named Henry. I was never much of a stuffed animal person, but this one
was special. I held onto to that monkey so tight, and it did not leave my body for
the next four days. He sat perfectly on my chest and was a nice little chin
pillow.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When the nurse came in, I looked at the big bandage that
went vertically up my stomach and started crying, asking if I had a belly
button. I was also confused about how I would pee. They explained that I had a
Foley, which meant they put a catheter in me while I was out and inserted a
tube that then fed to a bag where my pee went. Lovely. I later learned that
when my mom was saying I had no output she was referring to a lack of pee in my
bag, which is BAD after surgery because it means your kidneys are not working.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The nurses came in every so often to check my vitals and
listen for a pulse in my abdomen. I cannot even describe how sensitive my tummy
was to the touch of the stethoscope. Every time anything touched it, I
literally went through the roof with pain even though I was on a morphine drip (which my dad was worried I thought was a toy).
I was still not allowed to eat because they wanted to make sure my colon was
going to wake up. All I was allowed for the first day was a stick with a little
sponge on the end that my mom could wet and put in my mouth. I was going on 72
hours of nothing but liquids (because I had a colonoscopy the day before
surgery). And the incentive spirometer, oh the incentive spirometer. I had to breathe into it constantly to get the anesthesia out of my lungs. I would pass out and wake up to my mom holding it to my face! (Thanks, mom for the dedication because you know I wanted to throw that damn thing across the room.)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The nurses and my mom said that the best thing I could do
was to get up walking. They told me the first day would be tough, but I had to
work toward it. The afternoon of the surgery I worked with my mom and the nurse
just to slide my legs over to the left, and dangle them off the bed. I was
exhausted just after this and I did not move my own legs, they had to do it
for me. They then both grabbed me from behind on both sides of my body and
slowly tried to help me stand up. I was super dizzy and nauseous from the
anesthesia. I barely stood up and then started panicking because I felt so sick
and they said okay, okay that is enough and helped me back into bed. The nurse said
I did a great job and that just standing was really impressive for the first
day. You do not realize how much you use a part of your body until you are
without it. I could not even clear my throat because it hurt my abdomen so much. The
nurse showed me how to put a pillow on my belly when I had to cough or sneeze.
After that, my cousin and one of my best friends came to visit me and I just
remember talking and falling asleep mid sentence, then waking up, and then
falling asleep again.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The first night was the worst. I had a 103-degree fever,
which the doctors said was normal due to high trauma of the surgery. Little did
I know, that a fever was also potentially indicative of an issue with my
rectum. Dr. Albany had told my parents that my rectum might not be viable after
surgery and we would know within the first 24 hours. Thank God they did not
tell me that until later. My rectum survived. (Wahoo, you go boy!)<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My mom was there with me the whole time. She never left my
side while I was in the hospital and the rest of my family came to visit every
day. She slept on the chair next to me and held my hand all night through the
railing. I could not move at all, barely slept, and was sweating from the
fever. People come in every hour or two to wake me up for vitals, blood draws,
heparin shots, and I can’t even remember what else. Then at about 5:30 a.m. the
doctors came in for rounds.<o:p></o:p></div>
<div class="MsoNormal">
<br />
About seven people marched in and lined up in front of me.
Two of them were residents I had already met and the rest I had never seen
before. One of the residents was reading my case out loud, like on <i>Grey's Anatomy,</i>
as the others listened. I was thinking to myself, <i style="mso-bidi-font-style: normal;">I am not a fucking science experiment, is this really happening?</i> Resident number two started
to talk to me and I quickly put my hand up and said, “Woah, woah, woah.” Then
one by one I went down the line, “Who are you? I know you. Who are you?” They
each stepped up and stated their titles. When they were all done I said, “Well
I’m Becky.” I needed them to know I was no science specimen. I was a
22-year-old girl named Becky.</div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com1tag:blogger.com,1999:blog-1595858475106976721.post-8619278810157026312015-01-02T07:52:00.006-08:002015-02-01T10:05:38.746-08:00Moments<div class="MsoNormal">
<i>Moments.</i> Moments
can last 1 second, 5 minutes, 1 day, 3 days, or more. Moments are those times
when I get sad about what I have – a rare cancer I will be treating and managing
for the rest of my life. Since being diagnosed at 22 years old and embarking on
my emotional roller coaster, I have learned that <b><i>moments are okay</i></b><i>.</i> <o:p></o:p></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
Moments often take me by surprise and are really unpredictable.
I had a moment Wednesday night while at my friend’s house for a New Year’s party.
I was with my best friends – people I grew up with – and was having a blast. I
went to the bathroom, I think around 11 p.m., and was hit with a moment. I went
pee, readjusted my new sparkly dress, and then looked in the mirror. Granted I
had had a few drinks which we all know amplifies emotions, but I normally only
have moments if I go into the night upset. I looked in the mirror, pulled up my
dress and ran my hand down my ugly scar on my belly. It goes from above my
belly button all the way down town – probably about 6-7 inches (32 staples
worth after the first surgery). Tears began to stream down my face (and my great
make up I might add) and I thought, <i>I’m
damaged goods.</i> I wiped my tears, reapplied my red sparkly lip gloss and
rejoined the group with a smile on my face. Here is what I have learned about
moments over the years…<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b><i>Allow
them:<o:p></o:p></i></b></div>
<div class="MsoNormal">
I used to feel ridiculous or guilty when I had moments
because they are often irrational thoughts, and I know there are so many other
people out there that have it worse than me. Deep down do I know that I’m not
damaged goods and someone will love me even more for what I have endured and
will continue to endure, and my scars make me even more special? YES, I know
that. But, in that moment that is how I felt and I needed to allow it.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b><i>Feel
them:<o:p></o:p></i></b></div>
<div class="MsoNormal">
It is one thing to allow moments, but it is another thing to
feel them. Feeling them means screaming, crying, hyperventilating, sitting and
starting at the wall and not moving for an hour…being weak. The big ‘ol “w”
word. All my life I have struggled with being weak. I always thought that
weakness was a sign of weakness. What I have learned that weakness is a sign of
strength. The oh, so very strong are often oh, so very weak. In those moments
of weakness, we are really feeling…I mean feeling. Emotional pain so strong
that it aches in every part of your body. But my yoga teacher always says, “You
have to feel to heal.” This statement is so true. I have felt the hell out of
what I am going through, but <i>letting myself
feel it</i> is a still something I continue to work on. I was talking to my
friend Tara one day and told her that I have a “I don’t cry in the Dana Farber
building rule” (except when my tumor was back and huge I lost it) and she said,
“That rule is just dumb. You need to throw that one out.” She is so right. I
just always felt like I had to be so strong while there and then I could get
home and let it out. Why, though? For what? So I don’t look weak or vulnerable?
Dude, I have cancer – it’s ok. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b><i>Their
duration can vary:<o:p></o:p></i></b></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
This New Year’s
moment was literally just a moment, but sometimes they last a few days. When I
get bad news from the doctor like having to decide on bone loss medications, or
having to go on Lipitor for high cholesterol caused by the Lupron and Letrozole,
moments can last longer. I once red in Kris Carr’s book, <i>Crazy, Sexy Cancer,</i> that she gives herself a “3 day rule” when she
gets in a slump – or has moments. I have always tried to follow that rule. The
first day you are just an emotional mess, the second day you are in recovery,
and the third day you are just meh. Well a month or so ago my moment turned into
about a week. This was when I had to decide about going on bone loss
medications, and I went to a doctor who really wasn’t helping me. I disliked
her so much… She basically explained I could go on bone loss medication now but
there are no studies about what that does to people who ultimately have kids. I
likely can’t have kids, but don’t want to close that door. She said they have
no one else like me faced with the decision. <i>What?!</i> She said I could go on the drugs if I wanted or wait another
year, <i>if I wanted.</i> I looked at her
and said, “Look I don’t want to go on any other medicines if I don’t have to,
but you are the doctor and if you think this is necessary I will.” Still, no
good answer from her. She also mentioned that I would have to try the pill form
of the medication first, but it could cause acid reflux. If I couldn’t tolerate
it they would give me the one-time infusion. I told her I have terrible acid
reflux (have a hiatal hernia) and have been on Nexium for years. She said
sorry, insurance won’t cover the infusion if you don’t try the pill. BULL SHIT.
With all I was dealing with you won’t just give me the damn infusion. Well
guess what – she was fired. <o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Long story
short I went to a different endocrinologist at Dana Farber who really explained
everything to me and why it was such a hard decision, she also said she could
write to insurance so I could bypass the pill form of the medication. WHY,
THANK YOU, it will take two minutes of her day, jeez, I finally got a nice one.
I also left there with a <i>plan</i>, I
would go see a fertility specialist to run the plan by her, then I would get
the infusion. All cancer patients know that plans are sacred ground. When you
don’t have a plan…well it is just impossible to describe how unsettling that
is. This huge tangent to say, when all this was going down my “moment” or “funk”
lasted a whole week. I started beating myself up for it because it was more
than three days. Then I talked to one of my friends and she said, “Becky, you
gotta cut yourself some slack, you are dealing with a lot.” I guess she was
right. I also always have something in the back of my mind that my Aunt once
said to me when I was having a moment. She said, “I know. I know it’s terrible
and you think, how did I get back here? But, it is just going to happen and it’s
okay.” <o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
I will end
with a couple of my favorite quotes. For those of you that don’t know me I am a
huge quote person. They are hanging all over my cube, condo and really inspire
me. <o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<i>“Out of suffering have emerged the strongest
souls; the most massive characters are seared with scars.”<o:p></o:p></i></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<i>-Khalil Gibran<o:p></o:p></i></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<i>“Strength does not come from physical
capacity. It comes from an indomitable will.”<o:p></o:p></i></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<i>-Mahatma Gandhi<o:p></o:p></i></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<i>“It
doesn't take a lot of strength to hang on. It takes a lot of strength to let
go.”<o:p></o:p></i></div>
<div class="MsoNormal" style="line-height: 15.0pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<i>-J. C. Watts<o:p></o:p></i></div>
<div class="MsoNormal" style="line-height: 15.0pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<i><br />
</i><i>“We gain strength, and courage, and
confidence by each experience in which we really stop to look fear in the
face... we must do that which we think we cannot.”</i></div>
<div class="MsoNormal">
<i>-Eleanor
Roosevelt<o:p></o:p></i></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com2tag:blogger.com,1999:blog-1595858475106976721.post-27259412272168280212014-12-29T13:46:00.000-08:002015-02-01T10:06:17.782-08:00Being Rare<div class="MsoNormal">
Sometimes I feel forgotten. My friend Tara wrote a <a href="http://www.tarabeatscancer.com/2014_10_01_archive.html">blog</a> a few
weeks back that really resonated with me. She wondered how people with rare
cancers felt during all the hoopla around breast cancer and the fact that it
gets a whole month dedicated to it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For me, I am not even close to getting a month; my cancer
isn't even on the map. Aggressive Angiomyxoma (AA) – not to be confused with Alcoholics
Anonymous – has anywhere from 150 to 250 reported cases depending on which
sources you read. When I say reported cases, I mean EVER, IN THE WORLD. <i><b>Digest that.</b></i> The chances of me having
this are untraceable. For me, the worst things about being rare are: I will
never get a month and will likely never even get dedicated research, doctors
don’t know what to tell me and often turn to Google – I kid you not, and I don’t look
sick so people just have no idea what I’m going through. People can also find a
way to empathize with you if you have breast cancer or prostate cancer because
their mother, brother’s cousin or friend has had it. But, “Oh, hey I have
Aggressive Angiomyxoma, a soft tissue sarcoma,” causes someone to glaze over and
give you that I-am-trying-to-be-sympathetic-but-I-don’t-know-what-the-hell-that-weird-thing-you-just-said-is-face.
I don’t have a bandwagon to jump on. I have to blaze my own trail, but heck I
AM a mother friggin’ trailblazer, right?! I tell my mom and dad all the time
just how <i>special</i> I am. :) They got a
rare ass gem. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I pride myself on looking fab, even when I have been balling
my eyes out right before walking into work. I always say, “When in doubt, look
fab.” Yes I walk into work every day with a smile on my face, but am I fighting
a big ‘ol battle? Heck yes. <i>Here is a
glimpse. </i>One morning I started sobbing because I saw little kids (one was an
adorable blonde muffin with pig tails) walking into the day care across the
street (and I probably can’t have kids). One morning I was hyperventilating because
I am 27 and need to go on bone loss medications. One morning I was coughing to
see if I felt a little more pressure in my left butt cheek because I had a weird
poop that morning – so was Frank (the tumor) bigger? One morning, probably
about a year ago, I finally got myself to say the words <i>I have cancer</i> in my head – took about two years. Would anyone know
about these mornings (aside from my family who I likely called sobbing)? <b>NOPE.</b><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Rare on my friend, rare on…<o:p></o:p></div>
<br />
<div class="MsoNormal">
<br /></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com3tag:blogger.com,1999:blog-1595858475106976721.post-4200746839465725302014-12-23T12:04:00.002-08:002015-02-01T10:06:40.439-08:00We Rewrite Our Own Strength <div class="MsoNormal">
Yet again, something my Soul Cycle instructor said stuck
with me. Before going home for the holidays (yay!) I decided to do an early morning
Soul Cycle class with Sal. The regular classes are normally 45 minutes, but this
was the one hour class, called Soul Survivor. Well, let me just say this survivor
was souled. It was so incredibly hard, but amazing at the same time. The feeling
of pushing yourself to do something you never thought you could is
indescribable. As the class got harder and harder and we were about 15 <i style="mso-bidi-font-style: normal;">whooo’s</i> in, Sal said, “Keep going, keep
going! We all rewrite our own strength.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The next couple of days I could not stop thinking about what
Sal had said. I don’t think he – or I – realized how profound that statement
was until I really thought about it. I have rewritten my own strength dozens
and dozens of times. I went from hating needles, to you have a cyst the size of
a baby’s head in your abdomen, to you need major surgery, to oh wait, it’s
cancer, to you need another surgery and another, to it’s all gone, to oh, wait
it’s back and its huge…<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There are so many things that go on in your head as you deal
with an emotional rollercoaster like this. To be honest, it is impossible to
process all at once and fight or flight kicks in. (Then months and years later
it all starts to hit you, yes this is PTSD.) But what I now realize is before
this all happened, I was not as strong as I am now. As the punches in the gut
kept coming, I kept rewriting my own strength. There were times when I felt
like I had no emotional energy to even react to the next punch, but I think I
was just stronger – or at least I hope. The girl that once hated needles now
doesn’t flinch for a blood draw, or a foley post surgery, or an epidural for
pain management, or living with a tumor <i style="mso-bidi-font-style: normal;">every
day</i>.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although every cancer patient has many, many rewrites, it
doesn’t mean we don’t get tired, frustrated, feel defeated, and need to scream
and cry it out. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
***<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I went to visit my mom at school yesterday and saw her
friend Toni L. She looked beautiful. Her hair was done; she had cute boots on,
a bright sweater and a pretty scarf. Oh, and a smile, despite the fact that she
was holding her left arm because of the cancer in it, and the pain and swelling
she is dealing with. This woman has had so many rewrites, <i style="mso-bidi-font-style: normal;">my god</i>. Her and I chatted for a bit and she seemed in such good
spirits – I just marveled at her – all of her. She was telling me how she was
starting the trial the next day and she just hoped it worked, and that she didn’t
lose her hair. She said, “I know it's vain but…” I said, “Oh my god, it is not vain!”
It’s amazing how us cancer patients still keep so humble. She also said that
her nurse, who she loves, told her that she has much less cancer in her body
than a lot of other patients. That really gave her – and me – something to hang
onto. Her fight is not nearly over; she is just going through another goddamn
rewrite. Is it the most un-fucking-fair thing in the world? Yes. But will a
bright light like her ever give up? Never.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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<div class="MsoNormal">
Toni’s Facebook status the other day was about how blessed
she was this holiday season. Damn…she is the rewrite queen and I am just a
princess (tehehe) living in her city, inspired and encouraged by her every day.<o:p></o:p></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com4tag:blogger.com,1999:blog-1595858475106976721.post-83290626380772752442014-12-17T19:13:00.000-08:002015-02-01T10:07:06.519-08:00The Place We All Go…<div class="MsoNormal">
When you are fighting a life-threatening or chronic disease
you have to find a way to keep the faith…and that is what everyone around you
is coaching you to do. “Stay positive,” or “Keep your chin up,” or “Things will
get better,” or “You deserve to be happy.” (Sometimes I want to smack them
across the face and say, chill with the positive crap! I need a god damn
minute!) But when you see someone you know and love going through hell, and
more hell, you think, <i style="mso-bidi-font-style: normal;">why do I deserve to
be ok? <o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When my Soul Cycle instructor pushed us more and more tonight
and said <i style="mso-bidi-font-style: normal;">fight for what you deserve,
break through!</i> I pedaled harder and harder, but I could only think of my
mom’s friend who is fighting as hard as she possibly can and her cancer just
keeps spreading. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Her name is Toni L. and she works with my mom. She is an English teacher at a Junior High and my mom is the school nurse. My mom and her
share an extreme bond because of her rare breast cancer and my rare sarcoma.
Toni always asks my mom about me and Frank (my tumor), even when she is pale as
a ghost and thin as a twig from the chemo. There is no other way to describe
Toni other than she is remarkable.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Toni has gone through multiple rounds of chemo and clinical trials; some of which kept the cancer at bay for a while,
but she always knew the cancer would eventually outsmart the drugs. That horror
became a reality a couple of months ago and the cancer <i style="mso-bidi-font-style: normal;">has</i> spread – even into her arm causing her chronic pain. She is now
faced with the decision of another round of chemo or a clinical trial. Which
will work? If she chooses chemo and it doesn’t work, she may not be eligible
for the clinical trial anymore. If she chooses the clinical trial and it
doesn’t work she will think she should have gone with the chemo. <i style="mso-bidi-font-style: normal;">Impossible decisions.</i><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So as I powered through the last song of my Soul Cycle
class, and Sal (my favorite, adorable instructor) yelled at us to break through
that wall and fight, I couldn’t help but think, <i style="mso-bidi-font-style: normal;">but Toni is fighting the fuck out of life and she is still falling down
over and over again.</i> <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So how do I keep the faith if wonderful people like Toni are
hitting a wall over and over <i style="mso-bidi-font-style: normal;">and over</i>
again? I really don’t have the answer, but know we all have to just…keep…going.
And all I can do for Toni is HOPE and PRAY.<o:p></o:p></div>
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<br /></div>
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The place we all go…<o:p></o:p></div>
Beckyhttp://www.blogger.com/profile/17324386762394938172noreply@blogger.com5