Thursday, August 21, 2014

Getting Things Off My Chest...

Yes... I love to bring humor into otherwise stinky situations. It's not that breast cancer or leukemia or bone marrow transplants are awesome or funny - they suck; however, once the cards are dealt, you just have to roll with it, dance a little, and laugh a lot! So yes, you should expect lots of good mastectomy puns coming your way in the coming weeks and months!

With that being said, I do want to get something off my chest (not literally... yet).
 A mastectomy is not a free boob job.


It was one of the first things I said when I realized that double mastectomy could be in my future, "Hey! At least I get the boobs I always wanted!" That's because there was a time, not so long ago, when I thought that a mastectomy was a surgery when the surgeon cut you open, 'pulled out your boobs', gave you some implants, and you could go about living your life as it was - maybe just more endowed.  HOWEVER, as Donny and I scoured websites for information, watched Youtube videos, discussed the procedures with friends, and chatted with my physicians, we learned that nothing could be further from the truth.
Now as I mentioned in the previous post, there are different types of mastectomies and it is important to keep this point in mind. What I'm about to dive into, is specifically tailored around a bilateral, total mastectomy - the type I will undergo in only 18 days. However, all mastectomies suck. Period.


Once my physicians scheduled my surgery, I began describing what my mastectomy entailed to colleagues and friends - that is when I realized that I wasn't the only one who was a bit in the dark. Thus, I am providing a mastectomy crash course.

*WARNING: The below info, pictures, and videos are not for sissies. Proceed with caution.*


In a nutshell, here's what my mastectomy will look like (if all goes according to plan): 

Surgery
  • A total bilateral mastectomy with reconstruction is about a 5 hour procedure.
  • The breast surgical team will start off the surgery. When they're done, the plastics team takes over.
  • The Breast Team
    • My breast surgeon is going to make a marquise type cut above and below the nipple. That skin and all breast and fatty tissue will be removed. My breast surgeon will also scrape the inside of the remaining skin to try to ensure that as much cancer-causing cells are removed.This means the remaining 'flap' of skin is going to be very, very thin.


    • It is important to note that my breast surgeon pays careful attention to the tissue as she is removing it, since she likely would be able to spot an invasive cancer. The plan is to leave all of my lymph nodes in place; however, this could change if an invasive cancer is spotted during surgery. This is because invasive cancers typically spread to the lymph nodes before moving around the body. Removing the lymph nodes not only serves to potentially remove cancers but also allows the physicians to determine if additional treatment is necessary (i.e. chemo, etc).
    • To summarize everything I just said, watch from about 1:40 to 3:00...


  • The Plastics Team
    • Once the breast team is done, the plastics team takes over. 
    • In about 1 in 20 cases, the plastics team is unable to begin the reconstruction process (i.e. if the skin appears to be losing blood flow, etc). If this were to happen, they would just close me up and I would come back for another surgery in about two weeks.
    • Some good news! My plastic surgeon was particularly impressed with my skin, despite my prior radiation, and estimates that there is about a 1 in 40 chance that we won't be able to start the reconstruction process.
    • If all goes well, my plastic surgeon will initiate the reconstruction process and place my drains. The drains are rubbery tubes that allow the lymph and serous fluid to leave my body easily and collect in little bulbs. I will have these in for anywhere from 4 days to 3 weeks. Fortunately, my plastic surgeon is not anticipating that they will be in long since I am on the smaller side. Woohoo! 
    • What does the reconstruction process entail? 
      • In my case, I will be getting tissue expanders. Basically, a fair amount of skin gets cut out so unlike breast augmentation (aka a boob job) where implants are inserted, the plastic surgeon has to stretch the skin over time before putting the implants in. 
      • Tissue expanders are like really thick but empty water balloons. At first, there will barely be enough room in my chest for the expanders. After about 4 to 6 weeks, whenever the skin starts to relax a bit, my plastic surgeon will start filling the expanders with saline. 
  
      • We won't know for a while if I will have to see him once a week or once a month to get saline injections. Filling the expanders involves a quick outpatient visit to the plastic surgeon in which he will stick a needle in the little ports underneath my skin and inject saline. 


 

      • Once we get to a point where I'm happy (likely months from the initial surgery), we schedule another surgery. I'm told this surgery is 'easy'. My plastic surgeon will just cut along the scar and switch out my expanders for implants. 
      • In regards to picking the type of implant, this is not a decision that needs to be made now. Regardless of the type of implant chosen though, all implants need to be replaced every so often. Thus, I will continue to undergo breast surgery for the foreseeable future. Since we're not worried about the type of implant at this point, I will revisit this down the road.
So many implants...
      • Also, since this is not a nipple sparing mastectomy, I will also visit the world of nipple reconstruction at a later point.  
 
Pathology
  • Pathology will receive everything that is pulled out, likely while my plastics team is still hard at work. Over the following 2 weeks, they will analyze the sample and provide my oncology team with a final diagnosis. Hopefully, they will not find any new DCIS and/or cancer.

Inpatient Stay
  • Once the surgery is complete, I will likely be in the recovery room for 1-3 hours. After that, I will make my way to my hospital room. At this point, the physicians are anticipating that I will spend 1-2 nights inpatient. 
  • During the inpatient stay, I will do a lot of resting, receive some narcotics, and learn how to empty my drains - a job that will likely be delegated to Donny since my range of motion will be non-existent.

Recovery with Drains
  • As mentioned above, the drains will stay in for anywhere from 4 days to 3 weeks. During that time, my primary job is to move my lungs but not my arms.
  • The incisions themselves are not extraordinarily painful, I am told. However, for petite people, the skin stretching coupled with drain tubes and expanders can cause an enormous amount of 'pressure.' My physicians have assured me that I will feel "pressure, not pain" which could sound promising. HOWEVER, I was a leukemia patient that learned that 'pressure' from bone marrow aspirations (when the MDs pulled bone marrow out of my hip), was very painful - maybe a different type of pain but pain none the less.Thus, I'm a little skeptical.
  • While the drains are in, Donny and I will need to empty them 2-3 times each day. Fortunately, my plastic surgeon removes them as soon as the drainage dips below 30 ml/daily from each drain.
  • Immediately after surgery, my chest is going to look pretty gross. After removing a lot of skin and scraping the remaining skin until it is very thin, my chest will kind of look like a topo map due to the drains and unfilled expanders.
  • Since it is kind of hard to understand this without a visual and because this girl is awesome, I recommend watching the below video, if you would like a better idea.




Recovery post Drains
  • Since there will not be a lot of room in my chest, removal of the drains is expected to provide a huge relief. However, I won't be back to my normal self once the drains come out. Full on healing and recovery won't start for a while longer. 
  • I have had to promise my plastic surgeon that I will do nothing for a couple of weeks and you don't mess with this guy.
My fabulous plastic surgeon.
  •  I am not permitted to lift my arms other than to feed myself until he gives me the all clear. Thus, cooking, washing my hair, high-fiving, and even walking are off the list for a while. As you may have guessed, picking up the kiddos and driving is absolutely forbidden for a while longer. 
  • Eventually, I will start up physical therapy to regain my range of motion but for a while, I just have to let everything heal correctly. 
  • To give you an idea of how lousy my range of motion will end up. Here are some of the 'exercises' I will be doing post mastectomy...


Beyond the physical
  • It would be ridiculous to describe a mastectomy and only address the physical component because there is a HUGE psychological component. Any time an individual's body changes drastically, his/her perception of self is bound to be altered in some way - whether good or bad or maybe it goes back and forth between the two. Therefore, in the coming months, I will undoubtedly be sharing my thoughts on the psychological effects of this process. 







Monday, August 11, 2014

Fighting Cancer Like a Boss

... with meditation and bunny food.



Bunny Food
It didn't take long for my amazing work colleagues to notice my super leafy lunches that I started bringing in a couple of weeks ago. Within the first week, a friend commented that my Tupperware of greens looked remarkably similar to the veggies her husband was putting outside for the family of rabbits that lived in their yard. Thus, the contents of my lunches quickly adopted the nickname of bunny food. 
cilantro, yams, almonds, beets, shoots...

Why bunny food?
It's tough to even scrape the tip of this iceberg in a short blog post and I definitely don't want to push too much 'bunny food' propaganda; however, I can summarize my reasons for adopting this modified diet in 3 bullets.

1) Your body runs on the stuff you put in it, not dissimilar from a car. The better the fuel, the better the performance.

2) Certain foods and/or types of foods are linked with cancers. There are boat loads of studies that demonstrate that some foods can promote the growth of certain types of cancers. Cutting out these foods was a no-brainer- Why would I feed the cancer? AND... My Dana-Farber docs fully supports boosting cancer treatment with a good diet.



3) I love yummy foods and no, I'm not talking about kale (sorry, kale). I'm talking about comfort foods that are chock full of butter. Do I think they taste exponentially more delicious than broccoli sprouts and flax seed? Absolutely! Do I think they taste sooo delicious that I would be willing to give up seeing my kids graduate college - absolutely not. ...And that is exactly what goes through my head when I smell or see the delicious food. Yes, this is extreme, but for me, as I sit here typing today knowing that there is likely some ductal carcinoma hanging out in me, it hardly seems like a tough decision. I'm going to starve the cancer!

Observation studies have linked diets high in red meat with an increased risk of developing cancers (colorectal, lung, breast, uterine, ovary, prostate) and cancer recurrence. - See more at: http://www.integrativeoncology-essentials.com/2012/07/anti-cancer-nutrition-protein-101/#sthash.a0OE8ezf.dpuf
Observation studies have linked diets high in red meat with an increased risk of developing cancers (colorectal, lung, breast, uterine, ovary, prostate) and cancer recurrence. - See more at: http://www.integrativeoncology-essentials.com/2012/07/anti-cancer-nutrition-protein-101/#sthash.a0OE8ezf.dpuf
Observation studies have linked diets high in red meat with an increased risk of developing cancers (colorectal, lung, breast, uterine, ovary, prostate) and cancer recurrence. - See more at: http://www.integrativeoncology-essentials.com/2012/07/anti-cancer-nutrition-protein-101/#sthash.a0OE8ezf.dpuf
Observation studies have linked diets high in red meat with an increased risk of developing cancers (colorectal, lung, breast, uterine, ovary, prostate) and cancer recurrence. - See more at: http://www.integrativeoncology-essentials.com/2012/07/anti-cancer-nutrition-protein-101/#sthash.a0OE8ezf.dpuf

A benefit to eating healthy - fresh, local bread from Iggy's








Learning to Be Mindful...

Cancer or no cancer - most people I know lead pretty crazy lives. Whether it is my personal to-do list, a project at work, or getting all of the kids fed in time, I can be stressed out from time to time. I just call myself 'type A' and continue to ignore any stress - after all, I am being super productive! Little did I know that meditation could help relieve the stress and make me more productive. I know it sounds like 'crazy hippie stuff' (as a few of my friends have said) but there is some science behind it... really.

Dana-Farber is a HUGE proponent of learning to be mindful - regardless of your cancer status. The NIH National Center for Complementary and Alternative Medicine reports that regular meditation can reduce chronic pain, anxiety, high blood pressure, substance abuse, cholesterol, post-traumatic stress disorder, and blood 'stress' cortisol levels. Meditation may also improve mood, immune function, and fertility. 

www.headspace.com

It all sounded great but let's be real, WHO HAS TIME FOR MEDITATION!?! I was getting stressed just thinking about how to find time to meditate - I can't even shower without one of my kids visiting. Cue my new favorite app - Headspace. I'm not going to launch into a full infomercial about the app but I will say that it requires only 10 minutes. Bonus! The first 10 meditation sessions are free so you can give it a try (OK, that bordered on infomercial).

The way I see it, even if it is 'crazy hippie stuff', you may like it.

Here's a quick TED talk that the owner and founder of Headspace, Andy Puddicombe, gave...



T minus 28 days until the big day!!!

Monday, August 4, 2014

The Breast Cancer Journey Continues

Over the past couple of weeks, Donny and I met with the rest of my breast cancer fighting team including the breast cancer medical oncologist and the plastic surgeon.

As with any serious medical diagnosis (i.e. Crohn's, Diabetes, etc), there is a lot of information to process when you first get the news; my diagnosis was no exception. At this point, Donny and I were having almost nightly conversations about the treatment options. We would discuss how we planned on managing the kiddos for each of the treatment options and how we saw our lives playing out in 5, 10, and 15 years. I found myself fighting off tears as I wondered if I would actually be around in 15 years...

Breast Medical Oncologist

Donny and I had a pretty good feeling that radiation was off the table after my consult with the radiation oncologist but we didn't really know what to expect from Ann Partridge (the breast medical oncologist who doubled as the director of the adult survivorship program). We didn't know what specific treatment option she would recommend but we felt prepared to accept whatever she suggested... the truth is, we weren't prepared for her suggestion - "you have to do what you're comfortable with," she said. Although I felt like I had no control when the twins were in the NICU, I enjoyed that our docs felt confident in their decisions and merely told us what was happening.

Now, I was in the driver's seat... "This is a life-altering decision. Why am I making the call???"

BUT, there were two reasons.
1) Adult medicine in the oncology world tends to focus more on what the patient feels most comfortable doing.
2) There wasn't a clear-cut answer. My situation was rather unprecedented. There is research out there for young women with breast cancer, young women without breast cancer but with stinky genes (BRCA1, BRCA2, etc), and young women post treatment for Hodgkin Disease - but none of these women describe me. Don't get me wrong, young women that have had a bone marrow transplant and TBI do get DCIS/Breast Cancer, BUT there are not many of us running around. (AML has about a 50% survival rate and the low number of women like me is further complicated by the fact that a while ago, the oncologists stopped using TBI for both children and adults with AML due to the plethora of side effects. Thus, we don't have large pools of data to drive our decision.) So Ann presented us with the options and let us chose...

The Options

1) Watch and Wait - The watching and waiting option is something that is a great option for some people. Unfortunately, watching didn't see feasible since the DCIS did not appear on my mammogram or MRI so we were nervous that this approach would be more along the lines of wait and then crisis. 

2) Full Lumpectomy with Radiation - This option was really not on the table prior to meeting with Ann but we discussed anyway. If I were a 'normal', older, non-cancer survivor this would have been the preferred option. The recurrence rates of DCIS/Breast Cancer are very close for individuals that choose this option and a full mastectomy; thus, it is pretty darn popular. HOWEVER, this option was already axed since the radiation department didn't really want to give me radiation. Additionally, all of the physicians felt that I was at a high risk for another round of DCIS/breast cancer within 5-8 years so it seemed like a more extreme approach was probably warranted.

Radiation for Breast Cancer


3) Single Total/Simple Mastectomy- The lumpectomy with radiation option works because it pulls out any cancer cells and then zaps any remaining trouble cells, essentially ensuring that you killed all of the bad stuff. A simple mastectomy can accomplish the same thing - but it is a little more extreme. The surgeon removes all breast tissue (bad and good) from the skin and muscle. Unlike Angelina Jolie's nipple sparing/nipple delayed mastectomy, the nipple and areola are removed with a total/simple mastectomy. Nipple sparing would not be an option in my case since I have a ductal cancer and the nipple is the mother of all ducts.



4) Bilateral Total/Simple Mastectomy - A bilateral total/simple mastectomy just means that the mastectomy is performed on both sides. Given my history of TBI and the fact that I have DCIS at 31 means that I am at a high risk of having another bout of breast cancer/DCIS soon. Thus, Ann felt that it was more than reasonable to take this approach. 

After much discussion, Donny and I both felt like a bilateral total mastectomy would likely be the best option but wanted to chat with the plastic surgeon.

Plastic Surgeon
Our visit with my plastic surgeon was incredibly informative and in many ways, reassuring. We went through the process of the surgery, recovery, and reconstruction (more details to follow in a future blog post). After chatting for over an hour, I had to give my plastic surgeon a decision. At this point, it seemed pretty clear. "I'm going to opt for the bilateral mastectomy" it felt weird saying it. This was a big damn deal but, in that moment, my decision seemed less monumental than when I bought my first car. So, my plastic surgeon started the process of scheduling the surgery with my breast surgeon. Since getting my breast surgeon and plastic surgeon in the an operating room for the same 5 hours is surprisingly difficult, the surgery could not be scheduled until the second week of September. Fortunately, that gives me a lot of time to prep at work, at home, and most importantly, mentally.



It goes without saying that this is just the beginning of this chapter of my life with cancer but I cannot thank everyone enough for all of the support that has already been sent our way! We are so blessed to have such amazing friends and family. You all rock!!!








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. 




Surgery
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.