Wednesday, April 9, 2014

18 Years


18 years seems like a long time but also seems like it was just yesterday. I still remember sitting on the edge of the bed playing MBA Jam with my 9 year old brother, who was also my donor. I hadn't seen him much over the past 4 months due to infection concerns and because I had spent a great deal of that time in the hospital while he still managed to not miss a day of school. I vividly remember the basketball players on our video game lighting on fire as they dunked. As we sat there 'lighting up the dudes' and trash talking, we felt like kids again. But we weren't really kids in the full sense of the word - we had been immediately stripped of our childhood when we learned that I might die 4 months prior...

On January 6th, I was diagnosed with Acute Myeloid Leukemia. Only 500 kids in the US get diagnosed with this disease each year. I underwent two rigorous courses of chemotherapy before heading into my bone marrow transplant. 

The Transplant
It was unclear what we were actually facing. I was the third pediatric patient to receive a bone marrow transplant at my cancer center in 1996. To complicate this feeling of venturing into the unknown,a Bone Marrow Transplant isn't a procedure. It is a process - a long, complicated process, where even the physicians can't always tell you what's going to happen. 


Once I was admitted to the room where I would remain for over a month, I was hit with the hardest levels of chemo and radiation possible to hopefully wipe out any remaining leukemia cells. A person cannot survive this level of intense treatment without receiving an infusion of bone marrow/blood stem cells. After I received my brother's bone marrow,  I experienced severe acute graft-versus-host disease (my body attacked my new marrow) which striped my intestinal lining and started breaking down my skin. My meds were increased to manage the GvHD, which resulted in a series of tonic-clonic seizures and an altered mental status that left me unable to operate even the simplest of things for weeks... 

Growing Stronger
It took months to gain back the 30 pounds I had lost during my transplant and, more importantly, my immune system. It took even longer to learn to accept what I had been through and my "new normal". And still, 18 years later, I continue to grow stronger... I sometimes worry about the side effects of my harsh treatment - Will I be around to see my kids go to high school, get married, have kids (or adopt dogs)... The reality is that none of us, cancer survivors or not, know the answers to these larger life questions. Therefore, I am dedicating this next year to appreciating life in its entirety... after all, 18 is widely recognized in the Jewish community as a symbol of life. So here's a toast to a year full of embracing and appreciating life! 



And YES... I will be celebrating this year again by running in the Boston Marathon!!! Since 2011, your generosity has helped me fundraise over $67,000 for innovative research at Dana-Farber Cancer Insitute - one of the top cancer research centers in the World. With less than two weeks to Marathon Monday, the push is on to see just how much cancer fighting we can do this year. If you'd like to join the fight (again), please consider making a donation here. As always, we have awesome prizes that will be raffled off for anyone who donates... not that fighting cancer isn't enough.

And in case you still needed some convincing, here's how the donations over the past couple of years have already started changing how we fight cancer...


Although our current therapies cure about half of all patients with leukemia and lymphoma,the other half fail treatment because their diseases become resistant to treatment. This often happens as a result of genetic alterations in their leukemia and lymphoma cells. DFMC/Barr funding has allowed David Weinstock, MD, to use a powerful new technology called next-generation sequencing to identify the genes that can cause this kind of resistance. Drugs that inactivate these genes could prevent resistance and lead to cures in many more patients.



Last but not least... every year on my cancerversary, my parents send me something awesome (usually my favorite flowers). This year, much to my surprise, I received a bunch of balloons. What would have normal been a fun surprise was actually an AWESOME surprise and here's why... Over the past couple of months, I have had the honor of getting to know one of our dedicated volunteer families - they come out to almost every run, blast 'Don't Stop Believing', and hand out blue peeps! Just two weeks ago, they celebrated the angelversary of their son, Matty - who passed away from cancer. 
One of the things they did on his angelversary was release balloons in a bunch of different places around town. Getting to know this family better has been one of the highlights of my marathon training this year, hands-down... so I couldn't help but think of how awesome this year's present from my parents was. In honor of Matty, Gussy and I let the blue balloon fly last night... Gussy is pretty confident that Matty was super excited to get it. What an absolutely perfect way to kick off another year of cancer-fighting! Fight On!






  

Wednesday, February 19, 2014

My 2013 Boston Marathon Story

Many people have a 2013 Boston Marathon story. Whether you were in California, Canada, or at the finish line, so many of us were affected in some way. Although I am always willing and eager to share my cancer story, I have been reluctant to share my Boston Marathon story - for starters, I wasn't sure that I had a story.

It wasn't until I was asked to write a piece for a journal from my hometown that I sat down to write my story. As I grabbed my laptop to get started I thought for a second where to begin... and then I cried. It was all so surreal. Donny and I had friends at the finish who were seriously injured. My friend's dad had tied tourniquets where the second bomb went off. I had sneaked through police lines to try to find out if my family was alive... the instant pain in my gut returned recalling the thought that I may have lost my son, husband, brother, mother, and/or father.

It was at this point that I realized that I, too, had a story.

I will not go as far as to say that my story is anything special, it's not - 5,700 other runners did not finish, thousands of spectators were forced to witness bomb trucks speeding down the usually jovial marathon course, hundreds of people sustained physical injuries, and 4 people died.

No, my story is NOT special, but, in combination with the thousands of other similar stories, our collective story is special. It is a story of resilience and camaraderie. I'm hesitant to say that Boston is back... we never left. However, we are stronger and it has become quite clear that Boston is no longer defined by city lines. This year on Patriot's Day, people from all over the world will be watching Boston and we will be running... BostonStrong (and some of us will be wearing the most glorious tutus that have ever made their way from Hopkinton to Boston).  

The morning of April 15th, 2013. I couldn't have
been more excited to run the Boston Marathon in my tutu.


My article...



The city of Boston will be giving all
Dana-Farber runners a metaphorical hug
this year for all 26.2 miles.

Monday, January 13, 2014

Cancer after Cancer? Biopsies, biopsies everywhere!


*I want to add a disclaimer - please know that the the following is my first-hand account with cancer and life 'after' cancer.  It is intended to shed light on the necessity to improve cancer treatment... I apologize to all that may be offended.*

 
The doctors tell me that I'm no longer at risk for relapsing.  That's great news! Well yes... but in some ways no. I'm out of the woods for relapsing but I've entered a new world filled with the risk of secondary cancers (cancer that arises as a result of cancer treatment).  The reality is, cancer treatment sucks. 

I received a bunch of different treatments while attempting to destroy my AML: steroids, chemo therapies injected during lumbar punctures/spinal taps, chemo injected into blood vessels, oral chemo, more high dose chemo, total body irradiation, a bone marrow transplant... you get the idea. As I am here typing away today, obviously this concoction of toxins worked... HOWEVER, there's a huge problem. These treatments create a LIFETIME of problems for cancer survivors - case in point... how many 30 year-old individuals do you know that have been biopsied and imaged 3 times in 6 months for 3 possible different cancers?  

Cancer Treatment Problems
So here's the deal... there are a lot of different cancers and they all have their own recipe of treatments but most of the treatments stink. My personal least-favorite treatment is total body irradiation (known as TBI for short) - it can cook your ovaries, put you at a ridiculous risk for melanoma, give you cataracts, shut down your thyroid, and possibly hook you up with a little more bone marrow dysfunction (i.e. MDS or AML)... among other things. 

I know the idea of total body irradiation is a little hard to grasp so I wanted to help put this into perspective.  I received 12Gy/1200cGy (12Sv/1200mSv) of radiation for my transplant (see chart below). So maybe I shouldn't be that surprised when they find problems with my mammogram, a peanut-sized nodule on my thyroid, and nodules in my lungs.  

http://onthatpage.files.wordpress.com/2011/03/radiation-chart.png



I look in the mirror and see a chunk of skin missing in my nose and two recovering scars on my chest thanks to cancer.  The scars on my chest have been healing for over 17 years. I am proud of my 'battle scars' (as we like to call them) but I'm also done with the charade. It's downright scary every time I have to wait for a scan or a biopsy pathology report to come back.

    
Breast Cancer?
In May of this year I had yet another mammogram. After answering the same question four different times, I still responded in a cheery tone, "Yes, I know I'm young. I'm getting a mammogram at 29 because of my prior history of lots of chemo, total body irradiation, and a bone marrow transplant due to AML." I smiled through the whole mammogram - "what's a little pain... I've been through much worse!"  However, my smile faded when the radiation oncologist explained that my mammogram was concerning and that I needed to undergo a biopsy. "Do I have cancer... again?" I thought.



As I gowned up for the biopsy I wasn't worried about the procedure... you lie face-down on a table, stick your boob through a hole, the docs clamp it off, they pull out some of the suspicious area, the docs verify that they got what they needed, and then you're free to go. 





Unfortunately for me, the concerning area was very, very deep and after multiple attempts that involved contorting me into wildly uncomfortable positions, the surgical team almost gave up. They explained that we would likely have to head into full surgery to go at it a different way. "Let's give it one more try!" said one of the nurses, "Do you think you can stick your arm in the hole too and shimmy down?" For once in my life, my lack of being well endowed paid off!  


On our last attempt, we were able to get me into position. The team asked me to take very shallow breaths so as to prevent me from moving out of position.  I was happy to comply since I had no desire to head into a full-blown surgery. That's when the surgical team started running around the room, yelling commands at each other - it sounded like an episode from ER.  "I'm fairly certain I'm not bleeding to death," I thought. If I didn't feel like this was serious before, I certainly did now. The docs got a sample and after verifying that they had a good sample, I was un-clamped and free to head out.

About two hours after I arrived for my appointment, I was walking back down the hall with yet another scar... thanks to cancer. 

The interesting thing about leaving the breast biopsy area, is that you leave feeling more stressed than when you entered. It's analogous to leaving the lecture hall after your organic chemistry final. You head out knowing that all you can do is wait for the results... did I pass? It's funny to think about how things like O Chem exams hardly matter when you're waiting to find out of the biopsy reveals cancer.

After two long days, I received good news. Not cancer!  

Nodule 1 and The Neck Biopsy




Then in late November, less than 7 months after my breast biopsy, I had that same familiar feeling in my gut. I went to the hospital for a routine thyroid ultrasound. Due to the amount of radiation that hit my thyroid, I am at a higher risk of getting thyroid cancer; thus, my endocrinologist just wanted to do a screening ultrasound.  However, the screening ultrasound revealed a 2 cm nodule.  Suddenly, the normal stressors – what to have for dinner, the work to-do list, cleaning the house – seemed... well... not stressful.  Although I probably should have learned my lesson from my traumatic breast biopsy, I was not worried about the actual procedure.  Getting a breast, thyroid, or bone marrow biopsy isn’t like going in for a bypass or other major surgery – the climactic part isn’t the surgery, it’s the results that come back later.  And, although it is usually only 2 to 5 days that you have to wait for results, it feels like an eternity.  Although Tom Petty was referring to something entirely different, waiting really is the hardest part.  The bandage or slight twinge of pain is a constant reminder that you had a procedure and that you might have cancer. 

Today, January 13th, I went in for my thyroid/neck biopsy, or more specifically a fine needle aspirate.  A 'fine needle' didn't sound so bad... however, I will admit that pictures of the procedure did look a little more extreme than I had anticipated (thanks, Google image!).  


http://endocrinediseases.org/thyroid/img/pic_fna_nodule.jpg
The ultrasound wand helps the docs see where to biopsy.

http://i.ytimg.com/vi/CN5yFGaMDCs/0.jpg
See!  It's not that bad - she's smiling!!!



Keeping my fingers crossed pre-procedure!

Despite the procedure looking a little scary, everything went rather smoothly. Three separate syringes were inserted into my neck in a matter of 3 minutes.  Each syringe pulled out some of the nodule. The parts of the nodule that were extracted are now being examined by pathologists. I'm back to waiting.  So, now I am doing the only things you can do... I'm staying positive, keeping my fingers crossed, and eating chocolate while watching some hockey with my husband.

Stupid Cancer!!!








     

Thursday, December 12, 2013

Childhood Bone Marrow Transplant Survivors & Premature Death

I should start out by explaining that my greatest frustration with cancer stems from the number of amazing lives that it has claimed- both young and old.  I have lost friends, hospital-mates, relatives, and patients. As a cancer survivor, I feel guilty when I am anything other than completely thankful that I am alive (classic survivorship guilt); thus, I often do not harp on the plethora of issues that survivors face.  However, I'm heading down that road with this post...

'Beating cancer' isn't like graduating from a university.  There is no point during a battle with cancer that is analogous to walking the stage and receiving your diploma - there is no official end to cancer.  You can finish treatment, you can be in remission for 1, 5, or 20 years, but there is never a time when you can say that you're done with cancer...

I received a hematopoietic cell transplant (better known as a bone marrow transplant) in 1996 for pediatric AML.  Thus, when I came across the below article, I felt the need to share.  Why?  Not because I'm complaining about my survivorship status or because I'm hoping for a pitty party... I am sharing this because it is important understand where we are with cancer treatment.

We cannot measure success solely based on the number of patients who survive the treatment or the number of patients that are alive 5 years later.  We need to strive for cancer treatments that won't compromise morbidity and at the very least, understand that despite the cancer-free parties, it is entirely possible that a battle is still being fought.  



For the original, go to: https://bethematchclinical.org/Research-and-News/Browse-Research/Childhood-HCT-Survivors-Require-Life-Long-Monitoring-for-High-Risk-Complications/



Tuesday, April 2, 2013

In The Press!

Around Dana-Farber this morning, the newsstands were stocked with a new issue of "Inside the Institute."  Although I knew they were including a short blurb on our family's journey, I never expected us to be front page worthy! Huge kudos to Naomi for pulling together our story and of course, my amazing husband for supporting me through another marathon season. You're the best! 


"Staffer, survivor Hilary Hall runs second Boston Marathon



April 2011 was an auspicious month for Hilary Hall. The start of spring, which brings with it the revered tradition, the Boston Marathon®, marked 15 years of Hall being cancer-free, as well as the anniversary of her bone marrow transplant in April 1996 at age 12 for acute myelogenous leukemia. In anticipation of the milestone month, Hall laced up her running shoes. “When I heard about the marathon in October 2010, I knew that this was how I would celebrate,” she says.

It began as a one-time commitment. After a discouraging trial run (“After just a mile, the sight wasn’t pretty – hands on the knees, completely winded, my heart pounding,” she recalls), Hall began training under the guidance of Jack Fultz, who won the 1976 Boston Marathon and is now an advisor for the DanaFarber Marathon Challenge (DFMC) team, and other DFMC veteran team members. On April 18, 2011, Hall crossed the finish line in just under five hours. Through their DFMC participation, Hall and her teammates raised more than $4.5 million for Dana-Farber’s Claudia Adams Barr Program in Innovative Basic Cancer Research, which was founded by Dana-Farber Trustees J. Wayne Weaver and Delores Barr Weaver in 1987 to honor Delores’ mother, who lost her battle with cancer more than 30 years ago.


Hall, a clinical research coordinator in Pediatric Leukemia at Dana-Farber/Children’s Hospital Cancer Center, ran the marathon in 2011 in celebration of her life after cancer. Along the route, she ran by a glimpse of her past – a girl with a face mask, the kind Hall wore for months after her transplant. As the girl’s parents
cheered, Hall waved and smiled. Despite the mask, she saw the girl smiling back. “It was at that moment that I knew this was not a one-time deal,” she says.

The journey to 26.2 Hall again began training for the Boston Marathon in 2012. However, after a 14.5-mile run through Lexington in February, she learned she was pregnant with twins, delaying her return to the marathon. For Hall, this pregnancy, like her first, was “a miracle.” Not only was she pregnant again despite oncologists and fertility specialists believing it was unlikely she would be able to have children due to her pediatric cancer treatment, but it was a natural pregnancy and twins do not run in her family. Twin girls Adelaide and Eleanor, born at 27 weeks and weighing 2 pounds 4 ounces, joined big brother Augustus after three months in the Neonatal Intensive Care Unit at Brigham and Women’s Hospital.

Hall’s path from pediatric cancer survivor to marathon veteran is as extraordinary as her path to motherhood. When Hall and her family discussed treatment options 17 years ago, fertility preservation wasn’t their chief concern. More pressing was her survival. “Thoughts of not making it to my next birthday, let alone high school, overshadowed future plans for a family,” she says.

Today, as Hall prepares for the Boston Marathon on April 15, joining 19 DanaFarber staff and more than 500 runners on the DFMC team, she runs for Augustus, Eleanor, and Adelaide. Often asked how she can run the marathon with three children under the age of 3, Hall’s response is simple. “I’m running because
I have three small children,” she says. “Three small children who I never want to experience what I went through. This isn’t the only reason I run, but it certainly helps me charge up a hill when I’m feeling a little tired.”

Hall, who receives extensive follow-up care through Dana-Farber’s Perini Family Survivors’ Center, also runs for her patient partner, Nicole, who is battling stage IV-B Hodgkin lymphoma. “Like me, her cancer treatment has had lasting effects,” Hall says. “She is still working hard, more than a year after her cancerfree date, to get her legs working like normal. We’re hoping to run the last mile together and, one day, run the entire marathon together.”  For Hilary and Nicole, survivor and patient running side by side, tethered by a shared experience, it will be a mile of hope. "  Written by Naomi Funkhouser, Dana-Farber Cancer Institute

JOIN THE FIGHT HERE!




Sunday, March 17, 2013

19 Mile Fun Run

Yesterday, the DFMC team had one of our last group long-runs.  We departed from Wellesley and spent the majority of our 18-20 miles on the course, which meant that we ran up and down all 4 Newton Hills including Heartbreak.  

The luck of the Irish was not necessarily with us, as many of my teammates are now experiencing injuries.  March Madness takes on an entirely different meaning in the world of Boston Marathon training - it is somewhat expected that injuries will pop-up during the month of March, when the mileage for most runners climbs over 40 miles/week (not me of course, due to my shotty training schedule).  During our run, we took a break to massage Jamie's IT band and continued to monitor Eileen's Plantar fasciitis.  Fortunately, the most I had to complain about was a rock in my shoe, some hemorrhoids (apparently it happens to endurance athletes quite frequently), and the smallest indication that my IT Bands need a little more love.

The usual crew of girls and I (although a couple key players were still missing), polished off 19 miles.  They weren't all pretty but we certainly did our best to have a good time despite the ridiculous headwind on the return trip and those crazy hills.  

Photos from the run...


Chillin with Heartbreak Hill Bill.
Can't get too much of Bill.

Getting some wisdom from Johnny Kelley.

Wrecking one of the hills.


THANK YOU to everyone who has donated so far, this year.  With less than 1 month to go until Marathon Monday, we still have a little ways to go.  100% of the donations go directly to fighting cancer through novel cancer research in cancer treatment and prevention!

Sunday, March 10, 2013

A Snowy Run on the Marathon Training Highway

(Don't) Let it Snow!
On Thursday night, Boston and much of Massachusetts was nailed by yet another winter storm (details).  Despite my positive thoughts and pleas to ULLR (the Norse god of snow), the storm continued into Friday afternoon making roads pretty awful.  Don't get me wrong, I LOVE snow- I grew up in Buffalo, went to college in PA, and lived in Stowe, VT (by choice) for a bunch of years before moving to Boston  (none of which are really warm places).  However, when you find yourself having to fit in really long runs once a week and it snows before and during them (multiple times throughout a training season), you start to get a little annoyed. 


Proof that I loved snow at a young age (I think I'm smiling)
Lovin the snow outside our first apartment in Vermont.

Plan B
Fortunately, as I adamantly followed the progress of the storm on Friday worried about the impending cancellation of our run in Wayland, I simultaneously chatted with 26 other DFMC runners- we were creating a back-up plan.  While Boston (only) received 10-13" of snow, Wayland was hit with 18-20".  As you may have guessed, the run was cancelled.  Operation back-up group-run was in full effect! 


Our back-up plan had a lot of positives: 1) it was on the marathon course,  2) we would run 3 of the 4 Newton Hills (flats, as Jack our coach calls them), including Heartbreak Hill,  3) we would run as a group instead of attempting a solo treadmill run (huge plus!)  and  4) most of our run would be snow, ice, and car free.


The Run

We assembled in the parking lot pre-run and asside from someone needing to apply some Body Glide to their feet and the obligatory group photo, we were off running, literally. 






The first 2 miles proved to be a little hairy since all 14 of us were forced to run on the road.  Fortunately, our DFMC team jackets made it pretty hard for drivers to not see us.  Also, the ice on the first couple of miles was a little anxiety-inducing but once we made it onto the marathon course it was smooth sailing. 

Along the marathon course in Newton, there is a main road and then an access road (aka the Carriage Road).  The Carriage Road is a great place to run normally due to the nice pavement, rolling terrain and minimal car traffic; however, during this time of year, it is an especially great place to run because it is on the marathon course.  Thus, it has earned the nickname of the "marathon training highway."  As expected, it was packed Saturday morning, which made the run even more fun... and helped to put a little pressure on. 

The Carriage Road (photo obviously not taken on Saturday)
A popular route!


Overall, we had a great 16 mile run.  Eileen, Jamie, and I did our best to comfort one another about how smoothly race day will go - knowing that the outcome of race day is largely depend on things we cannot control.  Either way, we had a great time running the hills and stopping to take 1 or 2 ridiculous photos along the way.


One of the snowy trails we had to jump through along the route.



With only 35 days left until Marathon Monday, the fundraising and training deadlines are rapidly approaching.  Although there is little I can do to alter my training at this point, the fundraising can kick ass without fear of stress fractures or shin splints.  Please consider making a donation.  No amount is too small - really... just donate $5!  A cancer survivor will thank you (that's me)!!!