Lahey 5K 2017

As all are aware the Lahey Health 5K Cancer Walk and Run is one of my absolute favorite events of the year. Obviously when the hospital makes a video of you running the 5K and promotes it, you best be ready to run!

And because they had done this little video and then asked me to give a little speech before about how much I love Lahey, a lot of great people came out to run with Team NED, including friends from elementary school, middle school, high school running buddies, my college besties, post collegiate track club friends, colleagues, my parents and my boyfriend. 

Photo Credits: Theresa Johnson 

Photo Credits: Theresa Johnson 

Photo Credits: Theresa Johnson 

 How could it be a bad day? Friends came in from Colorado (with a 3 and 1 year old), Ohio (after leaving a 4 and 2 year old) and New York (with a 4 and 2 year old). These are brave friends! I am so grateful they were there. People juggled work schedules, family obligations and general life obstacles to be there. 

From the second I showed up early Saturday morning the atmosphere of gratitude and celebration of survivors was palpable. It started by meeting the wonderful photographer, who introduced herself as a 17 year breast cancer survivor. We discussed (as only other survivors will understand) how grateful we both were that if we had to get cancer we were grateful for breast because it is so well researched and that the tumors are usually outside areas that include vital organs. The BF just stands there shaking his head and after the interaction was done gives me a look and just says "okay....". 

As I walked through the crowd of people and dropped my bag off at the bag drop,  many people came up to introduce themselves and let them know they had seen the video and wanted to know if I was ready to beat last years time. I smiled, and let them know that I was happy to be out there running, but it was doubtful that I would be busting out some 7:57 min/mile (knowing what the last week had been). I ran into members of my treatment team who weren't sure I'd be there after the interesting week and half I had had. "I can't miss this event!" It warmed my heart to see all the people picking up their yellow Survivor t-shirts and the sheer volume of people at the Lahey 5k. 

Photo Credits: Theresa Johnson 

Just before the start of the race their is a little program featuring the CEO of Lahey Hospital and Medical Center, the chair of the Lahey Health Cancer Institute, a member of Burlington board of selectman and a grateful patient. This year that very, very grateful patient was me. As most everyone is aware I probably could have spoke for hours about my gratitude, but they said 2-3 minutes. My BF helped me whittle the speech down and my very proud dad filmed it on his phone while my mother looked on, beaming. 

 Video Credit: Proud Papa 

And then it was time to run. The ringers on Team NED (who I was bragging about to the CEO prior to giving my speech, letting him know that he'd be handing out multiple awards to Team NED) took off. And I struggled. But, my high school teammate, whom I have not run with in 17 years, gave up her competitive aspirations for the day and ran/paced me. She told me not to worry, that the day was about celebrating survival and she was happy to run with me. I really do have amazing friends! 

Photo Credits: Theresa Johnson 

Photo Credits: Theresa Johnson 

Photo Credits: Theresa Johnson 

I was tired (it was very humid), but ecstatic. My friend had got me through the 5K in 25: 24. 8:11 min/mile. NOT my slowest 5K as I had feared. The last photo is me trying to celebrate. I then like any good dietitian walked directly over to the Dunkin Donuts table and consumed some munchkins and water. You know for recovery! 

Also, I did not lie in my trash talking to the CEO (still competitive much?), members of Team NED were the 1st Female finisher, 2nd Female Finisher and 30-39 age group winner. Way to go speedy ladies!

I was so touched that people flew, drove and made it a priority to get to the Lahey 5k again this year. It was so great to see many of my favorite people in one place and be able to run with them again. It is quite a celebration of survivorship and the exceptional work that in my extremely biased opinion the people at Lahey do.

Team NED ended up raising over $4,600 for the Lahey Cancer services and that is better than any fast 5K time. 

So grateful for all of Team NED and everyone who donated there time, effort, sweat, money and baked goods! 

We'll just give it a whirl....and a trip to the ER

Since the DVT (deep vein thrombosis) x 2 diagnosis I have been that patient. I have been emailing my physician's asking questions, waiting for phone calls and taking a little trip to the ER for chest pain.

Last Friday, after pacing and waiting a return email I got a phone call from the NP I saw on Wednesday. She explained that Thursday had been her day off and that she wasn't ignoring me, in fact she had spent most of her morning discussing my case with lots of physicians. Here is what was decided.

1) I absolutely was not coming off the tamoxifen (phew)
2) The vascular doctors would like to see me that day in about 2 hrs if I could swing it
3) It was fine if I ran

So, I pick up yet another new specialist to add to my repertoire, a vascular specialist. She walked into the room and as she was closing the door, she looked right at me and said "You are not going to like anything I have to say".

I knew, right there we were talking being on a blood thinner.

She explained her reasoning. The blood clots were clearly being caused by tamoxifen and we cannot  remove the cause of the clots and we need to decrease the risk of the clots going to my lung (She repeatedly keeps telling me there is only a 5% risk that a clot would migrate from my calf). I begrudgingly agree.

We talk about all the blood thinner options and what my preferences would be (no dietary restrictions, take a pill once a day, minimal blood draws) and agree to start on Xarelto.  To give it at least a 3 month trial. It takes 21 days to load on the medication and it's main claim to fame is that the pill looks like the poop emoji

Given that this is my general feeling about the whole situation, it seemed only fitting. 

She can see my shear disappointment about having to start on a new medication. She encourages me to run, fly on airplanes and in general live my life.  

We discuss how I am clumsy and she explains that I will be bruised and just recommended I avoid falling down 10 or more stairs and striking my head. 

And because there is seriously something wrong with me all I can think of is the scene in Wayne's World when he asks "Will you still love me when I'm in my carbohydrate, sequined jumpsuit, waking-up-in-a-pool-of-your-own-vomit, boated-purple-dead-on-a-toilet phase" "Yes" "Party, excellent" 

I refrain from responding to her with "Party, excellent" and just take a deep breath and nod. 

Then I go pick up the giant pack of Xarelto to start with (it's very clearly labeled for what I take in morning and what to take at night) and has a warning sheet that is as wide as my wing span. 

The next morning I go for a run, and because I'm still having a lot of calf pain it is like running with a peg leg. But, I can still run. 

I start taking the medication and after 48 hrs on the medication I start having some right sided (the side of the clots) chest pain under my lumpectomy scar on and off through out the day. However, when I get home from work (after I leave the hospital) it becomes worse and pretty consistent. To the point that when I breath in it hurts more. I know I have to go the ER to get checked out, but I don't want to. My main reasoning "I didn't even go to the ER while I was on Chemo...." so apparently that meant that I will never go to the ER again. 

7.5 hours, standing chest xrays, EKGs, 3 failed blood draws, 1 IV placed into my bicep via ultrasound by a resident with a 5 inch needle, 1 chest CT with contrast (going to feel like you peed yourself) and 1 cup of urine later it was determined to just be muscular, not a clot. I felt silly for going in. The ER attending, resident, RNs and everyone else assured me that this was a very smart move and that I should always get it checked out. I also learned that it takes 3 days before the blood thinner really has a chance to start working. 

Now, I have gone for another run and actually have very minimal pain. I do have a very bruised left arm from failed blood draws and the successful IV placement. 

And I can still run. Trying to focus on the positive as we start the Adventures of Blood Thinners! Stay tuned for the next chapter. Hopefully, it involves less trips to the ER and more running. 

Now This I can Blame on Tamoxifen or How I got Blood Clots in My Calf

At one of my previous appointments, my oncologist had asked me to write a blog post talking about how benign tamoxifen was and how I had really no side effects. I agreed with her as I can count on one hand the number of hot flashes I've truly had, how I've learned to cope with increased severity of PMS (Captain Crazy Pants), and how I generally feel pretty good on it. After walking out of my mammogram and surgeon follow up like a boss I was totally prepared to write that post. But, all of this changed in the past week or so.

My brother, sister-in-law and 2.5 year old niece were in town for a really big princess party (also known as their wedding). So, naturally I took 2 weeks off from work and had a grand old time running around after the 2.5 year old and being Auntie Sara and part of the centerpiece production team. There were hair trials and multiple trips to Michael's craft store and a lot of playing with bubbles and movement. The only time there was sitting was to eat or when I was asked to read "Where the Wild Things Are" (as my niece would say, "Let the Grumpus Begin!"). Then came the actually wedding which is still a beautiful blur. Generally, there wasn't a lot of immobilization of my legs in the past week and half.

Starting on Saturday (the day of the wedding) my calf felt like I had had a charlie horse the night before and was sore in the middle. I had worn a lot of different shoes than my sneakers in the past week and my calves cramp all the time so I though little of it. I went for a run on Monday and my calf pain didn't get any better. I was concerned that I had torn the muscle which given the amount of picking up and tossing of a tiny person that had occurred in the week and half seemed reasonable. Tuesday, I noticed that the more I walked around the better it felt, but it was especially painful after sitting and the most painful after lying down for sleep. I found my right foot to be aching as well.

Thursday morning I was scheduled to get on a flight to Chicago. So, early Wednesday morning when I found myself doing what I know I shouldn't do, googling symptoms of DVT (deep vein thrombosis) and rationalizing that I didn't have any swelling (true), didn't have any redness (true), but that I did have pain that was fairly constant, no physical knots in my calf and point source tenderness in the belly of my calf. I decided that it was better safe than sorry and I called my PCPs office to make an appointment. "Hi, I'm been having calf pain for 5 days and I am scheduled to get on a flight tomorrow. Yes, 1:30 pm would be great". Thinking that a quick ultrasound would determine that my calf pain was a small tear and that my training for the Lahey 5K would be slightly derailed.

I meet with a lovely NP at 1:30 pm and I state why I am there "5 days of calf pain, on tamoxifen, want to get on an air plane tomorrow". She smiles, but gives me some words of caution, she had a 40 year old woman who was a patient last week who only had calf pain (no redness, no swelling) and it turned out to be a blood clot. She signed me up for my ultrasound of my right leg.

So now instead of shirtless fun, it is time for more pantless fun! A lower extremity ultrasound involves the ultrasound tech pushing the wand very hard against your veins to get good pictures of what is going on. The start in your groin and work their way down to your ankle. Now, when you are having some tenderness in your calf and someone needs to press really hard with a solid object against it multiple times you better sit on your hands or lock them together because your first instinct is to knock that wand out of the very kind ultrasound tech's hand. And when she is done, she states that she needs me to point to where the pain is and has to double back and take even more pictures right there. She apologizes, I just nod at this point.

Then they send me back in to see the NP. I get put in a room right away and I think great, she will roll right in and tell me that I should back off on the running for awhile.
And then I wait.
And wait.
And wait.

About 40 minutes later, the NP comes in with 3 pieces of paper and apologizes for the wait, but states she had to talk to 3 different physician's about the plan and still had more people she wanted to discuss this with.

I look at here and ask "What the farfanoogin (this word has been edited?"

She tells me that there are two clots in the proximal veins (those below my knee) and they are small, but they are present.

Me: Litany of expletives

The NP then goes on to state that it's not recommended that I get on the flight the next day, but I am an adult and can make my own decisions. She also tells me to start taking a full strength aspirin daily and that in a week I will have a follow up ultrasound to see if the clots have dissolved.

Me: Expletives and bargaining like my 2.5 year old niece in order to still get on the flight the next day.

The NP is just shaking her head right now and sends my oncologist a message to make her aware about the blood clots, a known side affect of Tamoxifen. And then states that I am pretty close to the 5 years that they have people on tamoxifen. I explain to her that I am supposed to be on it for 10 years. She now looks like she would like to use a litany of expletives.

I leave the appointment totally flummoxed. I keep very active. I haven't had long periods of immobilization, how could my calf pain be two blood clots (not just one!).

Then I get mad. Forget these blood clots, I'm living my life! I'm getting on the air plane, who cares what the vascular surgeon whose an expert in DVT suggests!

My very rational thought process than proceeds to fear. What if I have to stop taking the tamoxifen? What happens then? I haven't even hit a minimum of 5 year?

And then the final stage sadness. I had to tell my boyfriend who had rearranged his entire schedule for the past week and a half to do a ton of stuff with my family that our trip was off. No fancy hotel stay in downtown, no architectural tours, no great restaurants for dinner.

So, for now, it's back in a holding pattern. Taking aspirin, still taking the tamoxifen until I'm told to stop and walking around frequently to lessen the pain and waiting for a follow up ultrasound.

Damn you tamoxifen (But, please don't take me off of it!)! So conflicted...and back to pacing while I wait.

Squished and cleared

Last week started with my new version of tests since the PRESENT trial ended. I do not have to follow up with my oncologist, so I had a mammogram and follow up with my surgeon.

Because I know how to start the week out right, I had my mammogram at 8:30 am on Monday. It is always interesting to watch people do math when I give them my birth year and have them give the puzzled look as to why I might be having a mammogram. I like to smile in response. I think that imagination is an underutilized skill and do it as a public service.

My mammogram tech I have had previously, and she is great. She is also 4 ft 11 inches; I am 5 ft 8. I had to scrunch down to have the mammogram done. But, seeing as I need to scrunch down, stick my butt out, pull my arm, smoosh my face into the plastic shield, and generally try to become one with the mammogram, scrunching down a bit more is not really an issue. She also repeatedly reassured me that she was taking more than 2 photos on each side so that I didn't have to be called back. She worked meticulously to get all my markers in (two in the left, multiple in the right) especially because they are so close to my chest wall.  We discussed my particularly challenging anatomy-large rib cage, shoulders that have minimal range of motion and 1 and 3/4 boobs. She, however, worked her magic and no more pictures needed.

My follow up with my surgeon was very short and sweet. He and I chatted about general goings on in the hospital. He was happy with my mammogram and physical exam results. He asked me about how I was doing on the tamoxifen, and I responded "well". And then he said my favorite words "I'll see you in a year."

Yes you will, because all of this means that I will be around for another rotation around the sun.

Also, this may have been how I strutted out of my appointment:

Holy Baked Goods Robin!

So myself, my boyfriend and all the dietitians (and one very generous nurse) really outdid ourselves this year. We went to town baking and candy making. My poor roommate wasn't able to use the freezer for the past month. But all the cupcakes, cookies, donuts, mini loafs, fudge, peanut butter cups and giant cookies was well worth it. 

Here are some glamour shots of all of our hard work 

Here is everyone pitching in

The bake sale is always one of my favorite events of the year. People are very generous with their money, but also in spirit. My mom and bf have heard me rave about how much I enjoy sharing with people during the day that they decided to join me in sling the bake goods. 

The hospital has been promoting my story and many people came up the the table to chat. Two women who work in the hospital told me that when they first saw me bald 4 years ago, they thought I had just donated my hair and that didn't realized that I had gone through treatment until they read about me. I chuckled thinking they obviously hadn't seen me towards the end of chemo. 

My favorite interaction of the day, however, occurred between my mother and a patient family member. (Side note, inviting your mother to work the bake sale, means she tells all the people that you are a survivor out of the cancer center). My mom was chatting with a husband to a patient who asked her what the bake sale was for. She explained that we are Team NED (No Evidence of Disease) and that we were raising money for the Lahey Cancer Center. She told this gentleman that I was a breast cancer survivor out of the cancer center (Four years!). He started to tell my mother his wife's story. He stated that in February she had been diagnosed with breast cancer and had undergone a bilateral mastectomy. My mother asked "How is your wife doing?". The man's face lit up "Thank you so much for asking, she is doing well and won't need chemotherapy, but is about to start radiation". My mother responded with "Ok well with radiation she might experience some fatigue and usually have some skin burning." He asked her how she would know that. She told them how she used to do radiation for the hospital and from my own experience. He responded "I am so glad that I stopped by this table today" and handed her a $20 bill. She asked "what can I get you?". And he responded with something that will stay with her for a long time...

"Nothing, you just gave me everything that I needed". 

More than just a bake sale. Its great to get out there and meet all the other cancer survivors and fighters who stop by the table (especially the woman who bought cookies pre and post her chemo infusion!). 

At the end of the day, we broke every bake sale record. $2,147.85. Damn that one is going to stay for a long time. 

Go Team NED! 

BCRF Hot Pink Party Boston

The wonderful folks at the Kelly Care's Foundation invited myself and my BF to join them at the BCRF Hot Pink Party Boston for a night of dinner, dancing and celebration of of heroes, fundraisers and a whole lot of survivors.

I had heard of the BCRF (Breast Cancer Research Fund), but was unaware of the phenomenally great work they do. The BCRF is committed to being the end of breast cancer though research. It was founded in 1993 by Evelyn Lauder and has been involved in many breast cancer breakthroughs. These are the people involved in getting herceptin chemotherapy clinical trials rolling. Herceptin has been a game changer for folks with HER2+ breast cancer, as the diagnosis is no longer a death sentence. They have also funded the research to prevent over treatment of early stage estrogen based cancers and helped developed care paths as not everyone needs to have chemotherapy and still experiences the same outcomes. More of the amazing progress this institution can be found here.

Needless to say, once I realized the magnitude of work that the BCRF has done and is doing, we were even more excited to attend. And as you can see (above) it was a great event. They honored a breast cancer survivor, who has also overcome the death of a child and colon cancer after finishing treatment for breast cancer. It was inspiring to hear how she not only continued to get up day after day and continued to support not only her family, but also help continued to help others as they went through breast cancer treatment. Very self less.

It was fun to be part of the celebration of all the great research that they do in the Boston area. The BCRF has awarded more than $7 million in grants this year to research in the region. It was also empowering to be surrounded by so many breast cancer survivors and their support systems. It was amazing to be in a room full of people who understand science and believe that research with be the end of breast cancer. 

The night capped off with dancing and dessert with music by Nile Rodgers. Nile Rodgers is a Grammy award winning composer, producer, arranger and guitarist. And....he is also a cancer survivor. He produced a wide breadth of hits "Le Freak"  and "Good Times" as member of CHIC, David Bowie's "Let's Dance", and Sister Sledge "We are Family". It was a spectacular to dance to "We are Family" with one of it's producer's preforming it with a room full of breast cancer survivors...the line "I've got all my sisters with me". 

What a fun event for an organization that uses 91 cents of every dollar donated toward either research or raising awareness. I'll be excited to see what comes out of the research funded by the BCRF in the future and their goal to #BetheEnd. 

#GameChanger

I was fortunate enough to be able to return to the Irish Eyes are Smiling Gala for the Kelly Care's Foundation on Monday April 24th. It is such an awe inspiring, soul repairing, celebration of gratitude and people who are #GameChangers that I was excited to return.

The Kelly Care's Foundation with it's great tagline of "A Playbook for Hope", is a great foundation that funds research that supports Health, Education and Community projects. The foundation came to be after Paqui Kelly (wife of Notre Dame's football coach Brian Kelly) defeated breast cancer twice. The Gala is a celebration of things the foundation has accomplished throughout the year and highlights individuals who make great contributions to the areas of Health, Education and Community.

The folks at Kelly Care's were aware of how inspired I was by Paqui Kelly last year and asked that I participate in the video that proceeded her introduction. I was honored to be able to participate and did my best not to be tongue tied.

Here I am up on the screen at the Gala, trying not to cringe at the sound of my own voice. Part of this video clip was for me to fan girl about Paqui Kelly and how inspiring it is that she took her gratitude about her support and level of treatment she received through her cancer battle and started a world class foundation. The other piece was to help promote their initiative about how everyone can be a #GameChanger. This social media campaign appeals to me because I believe that everyone does have the potential to be #GameChanger and that through work on this little blog, I am one. 

This year's gala paid tribute to the life of Steve McDonald, an NYPD officer who was shot and paralyzed by a 15 year old in central park in 1986. Steve spent his life being a champion of forgiveness and listening to his son and others talk about him, you knew he was an amazing man. 

The gala also honored Pat Quinn of Quinn for the Win, one of the tri-captains in the battle against ALS. He was introduced by the Pete Frate's (another Tri-Captain and well known to those in the Boston area) parents. As a breast cancer survivor, it is amazing to me to think about that prior to the 2014 ALS ice bucket challenge, ALS research had not been properly funded and new strides in treatment had not really been made since Lou Gehrig had the disease. Pat Quinn lives the mantra of Fight Like a Champion. He and Paqui both talked about being part of team's they never chose, but taking an athlete's approach and being an active participant to their new teams. Very relatable. 

The final honoree of the night was Hall of Fame football quarterback Jim Kelly. 

Jim Kelly in his Hall of Fame jacket with Irish Eyes are Smiling Gala Chairman Brian C

Jim Kelly gave an impassioned speech about being resilient and keeping a positive attitude. Jim Kelly also had a quote that will stay with me

Make a difference today, for someone fighting for their tomorrow. 

Whoa. I may have to print that out and hang it up. Talk about #GameChanger.

And then the band Chicago played. Yes, Saturday in the Park was played. Amazing.

I am grateful for the opportunity to attend and be inspired by those the Kelly Care's Foundation honored. I was also grateful for a comfortable dress and not wearing a bra (fancy back to my dress) out in public for the first time post lumpectomy. This was personal win for me and my self confidence.