Monday, July 14, 2014

Getting a diagnosis... again

It was almost 5pm on Thursday afternoon. I was sitting at work and picked up my cell phone without glancing at the number, expecting that it was my husband calling to alert me that he would be coming home on time in contrast to his usual late arrivals. When I didn't hear anyone on the other end, I pulled my phone away to glance at the number - I didn't recognize it. Still no voice. "Hello?" I repeated. "Hi, Hilary! It's Dr. Dominici." ... my breast surgeon.

The call took me by surprise a little. After all, I wasn't expecting the pathology results of my breast lumpectomy for at least another week or two given the '7-10 business day' wait time that I was quoted... especially after the initial biopsies took longer than expected. Thus, I thought that Dr. Dominici was just checking in on how the surgical area was healing. I was prepared to tell her I was doing well and starting to feel well enough to tackle a run. Would she be OK with me heading out for a run?

"Hilary, we got the path results back already..." My heart dropped and I had the familiar feeling of fear quickly radiate throughout my chest. This is not a novel feeling for many cancer survivors - it happens every time your doctors want to send you in for scans, blood work, or biopsies 'just to double check'. After 18 years of being a bone marrow transplant survivor, I have learned that it is almost always nothing; however, it felt like a small eternity passed before she continued. Maybe it was the tone of her voice, maybe it was because she didn't wait the expected 7-10 business days, or maybe I just felt like something wasn't quite right... "You have stage 0 breast cancer or what we call ductal carcinoma in situ." She continued on and said that she, instead of the usual NP, would like to see me for my follow-up visit given the path results. "Do you have any questions?" she asked before saying that she looked forward to seeing me in a couple of days. I paused... Questions? Of course I had questions - What exactly is my prognosis? What is the treatment? Did you get all of it out? Am I still a cancer survivor... All of the questions would have to wait until the following week. 

The Follow-Up Visit
For most of my adult life, I have handled all of my cancer and pregnancy care solo, by choice. I took cabs to my weekly ultrasounds when I was pregnant with the twins and took a long lunch from work when I had my thyroid biopsies. Donny and I are working parents and it is a huge burden on our family system when we both take off for visits because I have A LOT of them! Don't get me wrong - he tries to come, but I always insist that he should save his days until I actually need him - that is, when I actually have cancer. So, as we walked into my follow up appointment together, it was a stark reminder that this was more than just the usual false alarm.

Naturally, as a research coordinator in oncology, I wanted to know everything about what I had. I spent the time between when I first got the call until the moment we walked into the follow up appointment doing extensive research. In fact, I was still on my phone reading journal articles as we sat in the waiting room at the surgeon's office. Then we saw Dr. Dominici...

The good news is 1) the surgical site was healing nicely 2) I could start lifting my kiddos and running again and 3) the diagnosis could be much worse (for example - invasive ductal carcinoma or IDC).

Now for the less awesome news... Ductal Carcinoma In Situ (aka DCIS) is a condition where atypical cells start growing faster than they should. As the name suggests, my crazy cells were found in the duct (where milk flows through) and they hadn't started invading the neighboring tissue (in situ = on site or in position). The innumerable sources on DCIS that flood the internet explain that DCIS cannot kill you because by definition, it isn't invading and metastasizing. However, DCIS can become invasive cancer and can eventually move into the bones, brain, liver, and lungs. Its name changes when it does this but it more or less is the same beast. Of note, as researchers learn more about DCIS, more people are debating whether DCIS should even be called a cancer. Thus, some organizations will include this in their breast cancer statistics while other organizations won't include DCIS in the total.


My "Cancer" In a Nutshell
We learned that the lump that appeared on my MRI, the reason for the surgery in the first place, was not the DCIS, but was a fibroadenoma (completely benign). However, in pulling that out, the surgeons also stumbled upon the DCIS. Since the initial plan did not include pulling out DCIS, we didn't have great margins on 3 of the axes. This means that DCIS could still be swimming around inside me. Also, since it didn't appear on the mammogram, we don't really know if there is more.

An obvious question, why didn't we see the DCIS on my mammogram or MRI? DCIS is usually seen in 60-ish year old women via mammograms. It appears as clusters of little white dots known as calcifications.

Unfortunately for young women (or fortunately), the breast tissue is really dense when you're young and it is especially hard to see calcifications through the dense tissue. As time goes on, the tissue becomes less dense and the calcifications can also be seen more easily. As you may have guessed, the fact that the DCIS cannot easily be seen in me via imaging, makes treatment of DCIS in young women especially hard (yes, they consider me a young woman still - woohoo!).

At the appointment, we also learned that my DCIS responds both to estrogen and progesterone (that's a really good thing). It didn't seem to be super aggressive either - the pathologist classified it as low to intermediate nuclear grade.

My breast surgeon was not sure what my team would recommend. Typically, women with DCIS would just have another surgery to cut the remainder out and probably get Tamoxifen (an oral med) for 5-10 years and/or radiation to that area. Historically, mastectomies were used to treat DCIS across the board but that culture is shifting. Studies demonstrate that a full resection of the DCIS with radiation is almost as effective as a mastectomy in many cases- as long as regular scans were used. Of course, I was confused by the idea of using scans since the scans did not really work for youngin's like me. I think we left the surgeon's office with more questions than we came in with. Cue the amazing team of doctors...

My Breast Team
Since I first learned of my diagnosis, I have been able to connect with multiple radiation oncologists from across the country - thank you to all friends and family who helped make those connections. I have spoken with pediatric oncologists about the DCIS in the context of survivorship. I have had friends put in calls to the top physicians at DFCI to ensure that my interesting case is given the appropriate attention. And just last week, I was fortunate enough to have my 6-month oncology visit.

Oncologist (post-transplant team)
I will admit, I was a bit nervous heading into the visit. I had to get a chest CT to follow up on the lung nodules that were found in December on an x-ray. Although I tried to remain mentally strong, it was hard to not worry for a split second that the lung nodules represented something more (lung cancer? metastasized breast cancer?). I will spare you the worry and let you know that the little guys haven't changed a bit since December. Needless to say, that was a HUGE sigh of relief. More good news - my fabulous oncologist confirmed that everything else looked great.

Radiation Oncologist
The day after my medical oncology appointment, I had a very long visit with one of the radiation oncologists at Dana-Farber. We chatted for almost an hour about the potential to use radiation in my situation. I had already been hit with a good bit of radiation - 12 Gy, to be exact - which very likely could be the cause of the DCIS in the first place. Secondary cancers are a known side effect of total body irradiation, although it doesn't make my current predicament any easier to stomach.

Unfortunately, the DCIS that we found was located just over my heart. As I've discussed here before, radiation sucks. So much so that they don't use radiation on AML patients any more - pediatric or adults. One of the many side effects of radiation is damage to the heart and it gets worse with additional radiation. The physician thought she could angle the beams to avoid a direct hit to my heart; however, the direct 'beams' of radiation are somewhere in the area of 40 Gy which means that a certain amount of 'scatter radiation' to the heart was unavoidable. The radiation oncologist felt that any more than 1-2 Gy of scatter radiation would put me at serious risk of additional cardiac issues.

Thus, the idea of exposing my heart to even a little more radiation seemed less than exciting to her. However, she agreed that she could probably radiate me. Following this statement though, she said, "We can cut out the DCIS and use radiation this time but what about next time? You're young and it will come back. Whatever pre-disposed you to getting DCIS at 30 is not going away... and next time it has a 50% chance of being invasive."

The Rest of the Team
After circling back with the surgeon, we still have a lot of important folks that have to weigh-in before a treatment decision is made. This week I will be meeting with Ann Partridge - a physician who specializes in survivorship and young women with breast cancer. The following week I will be meeting with the plastic surgeon, who oddly enough has performed mastectomies on almost all of my friends - sadly, I don't think there is a friends and family discount.

In Summary...
We don't really know what this diagnosis means yet. As a cancer survivor who received a lot of treatment that now faces a diagnosis not typical for young women, our immediate future is a bit up in the air. We know that the treatment will likely have a huge impact on our family over the next bunch of months regardless of what treatment path we take; however, the hope is that we can invest a few months to ensure that I am able to attend kindergarten/high school/college graduations, make embarrassing speeches at weddings, and possibly meet grandbabies - even if the grandbabies assume the form of puppies or kittens.

Most importantly, thank you to all of my amazing friends and family for all of the love and support. I continue to feel like I should have used up my quota of love and support from all of you yet it continues coming. THANK YOU for making this so, so much easier! 

Sunday, June 22, 2014

Happy Birthday! You might have cancer...

Every year on June 2nd I celebrate my birthday (and usually enjoy some cake with my dog).

In the weeks surrounding my birthday, I head to Dana-Farber for tests and appointments. I have a mammogram, MRI, ultrasound, chest x-ray, pulmonary function test, ECHO, and a whole bunch of blood tests with the primary goal being two-fold - 1) to ensure that the long-term side effects of my cancer treatment haven't reached a level that requires intervention 2) to ensure that no new cancers have cropped up as a result of the chemo and radiation.

This year's battery of tests started out just like the prior year's... I had a mammogram. Unlike last year, the mammogram came back without any red flags, which meant that I could avoid another biopsy. However, the decision was made after last year's events to throw in an annual breast MRI. MRIs and Mammograms are very different and show different things.

Fortunately, the world we live in is AWESOME and I got hooked up with a pair of noise cancelling headphones during the MRI. The MRI team put on my request for the Jack Johnson Pandora station and I got to lay down for about 30-45 minutes... for a mom of three kiddos under 5, this is more or less like going to the spa.

The Ultrasound  
On May 9, my oncologist relayed the news that 'three things popped up' on my MRI and I needed to head to ultrasound. "Ultrasound? Great!" I thought, "This beats another biopsy." 

Due to my 'high risk' status, I was tag-teamed during the ultrasound by two doctors with a great sense of humor given the circumstances. Maybe they're always used to people being really stressed but I wasn't. Based on their commentary, there was one lump that looked like nothing, one that probably was nothing, and one that they couldn't find on ultrasound despite me twisting into crazy positions.  After repeated 'looks' at the lumps, the physicians said "they are probably nothing but we should biopsy them given your medical history." So I was headed back to the breast biopsy clinic...

More or less what my lump looks like on ultrasound.

The Biopsy
I was very excited to learn that this biopsy was going to be much less of an experience than last time. It just involved an ultrasound machine, some lidocaine (obviously), and the ridiculous contraption that more or less sucks part of the lumps out. In true clinical research coordinator fashion, I agreed to give some extra sample for research - fortunately, I got more than just personal satisfaction and some good karma out of this - the doctor running the trial visited and proceeded to do an awesome dance due to their overwhelming excitement.

In order to mark where the lumps were located for the next round of imaging, I ended up with two more titanium markers placed in me. These markers show up on imaging and let the radiologists know that we've already checked out that spot. It also lets the surgical team know where the lump is located if they have to head in for a resection.


My Birthday
On the day before my birthday, I woke up knowing that the pathology results from my biopsy were taking longer than expected. This was because my lump samples were sent out for additional immunohistochemistry tests - I will save you a complicated biology lesson and just say that usually this is needed when things are not super clear cut or when something, like cancer, is going on and they need to further identify it. I was fairly confident that I would have results by the end of that day but alas, that afternoon I still had nothing. My work colleagues are awesome and laughed with me as I said, in a weak moment, 'I'm going to be annoyed if they tell me I have cancer on my birthday!' I wouldn't go as far as to say that I was losing sleep over it but there was small feeling of concern now growing.

Fortunately, cancer has a way of helping me refocus on enjoying the moment. Thus, my partner in crime (Donny) and I agreed that cancer or no cancer - we needed to make the most of the present. So, naturally, we went to a couple of shows! On Monday we saw The Old 97s and on Tuesday, we saw Ingrid Michaelson and A Great Big World. While Ingrid, A Great Big World, and a whole bunch of their friends crowded on stage for the tour finale, we crept into the midnight hour and I knew my 31st birthday was coming to a close. The lyrics to the finale song seemed particularly relevant and I soaked up every glorious minute. 

I made it through my birthday without facing the words, 'you have cancer,' but I wasn't in the clear. The morning after the Ingrid concert, I received word from my oncologist that one of the lumps was indeed benign as we expected but the other wasn't. Based on the number of sketchy cells in the small samples that were pulled out, it appeared to be 'pre-cancerous' but, as my surgeon verified, the entire lump was coming out. As I've learned throughout my complicated 18 year relationship with cancer, it's not always black and white - sometimes a cancer diagnosis can fall into the grey area. In my case, the pathologists need to look at the whole lump to determine if there are enough atypical lobular cells to call this thing cancer. Even if it my lump does not earn the official title of cancer, which I'm hoping it doesn't, we still may not be able to close the book on this case. Depending on the breast oncologist, some folks still end up getting treatment, such as mastectomies, due to the high probability of one day developing cancer.

So, as I officially say goodbye to food for the next 18-20 hours and prepare for the surgery by washing one last time with my special soap, I can't help but wonder what road we will be heading down. In thinking about this unknown future I continue to be a bit frustrated with myself... a couple days ago when I was discussing the surgery with my surgeon, I learned that we could keep my nipple... "Keep my nipple? Are you kidding!? That's the good news!?!" But I keep having flash backs to that time when I thought that losing my hair from chemo was going to be devastating... A little perspective certainly goes a long way.

It goes without saying that I will post a surgery update within the next few days; however, we won't have a path report back for a little while. I promise to keep everyone abreast of the situation (sorry, I had to use that pun at least once)!

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.

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!).
The ultrasound wand helps the docs see where to biopsy.
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:

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