Baking and Running And Fundraising

It's bake sale and Lahey 5K season!

We launched our Team NED (No Evidence of Disease) campaign this year on NED Day (February 27th) and geared up for our annual bake sale. The dietitians (and a speech language pathologist) baked in full force. We had 3 tables full of goodies. We take great pride in people letting us know that it is one of the most professional bake sales people have been to.

Unfortunately, I cannot seem to find the photo of our tables packed with goodies. It is one of my favorite days, I  get to spend the day meeting fellow cancer survivor/fighters and discussing baking with people who stop by the table. Our bake sale broke all the records this year as we raised, $2,198! That's just nuts for baked goods! 

Yesterday, was a great day for the Lahey Health 5K Cancer Walk and Run! Team NED was out in full force with friends, family, and colleagues. Team NED recruited 3 more cancer survivors to our little team the could. We had a great day running, walking, and our finally fundraising tally was $5,043! Yay! Team NED had the overall female runner winner, again, yesterday (2015, 2017, 2018). It's fun to still have fast running friends! It's such a joy each year to have all my friends and family there and bringing their friends and family and watch the team expand (and their kids grow!) Shout out to my high school teammate who helped me run a respectable 26:52 (slowest 5K ever), but way better than what my training runs have been. But, I still beat my oncologist, so that's a good day. 

Thank you to all who donated, baked, ran or walked. It made yesterday a great day and raised money for the Lahey Health Cancer Institute. 

PS. Had may mammogram on Friday and got the all clear. Made for an extra great race! 

Survivorship is not a linear process

Survivorship is definitely not a linear process. There are many peaks and valleys and sometimes sharp cliffs. There are days you don't feel well, and days you are frustrated by the amount of medication you take, days that things get biopsied and sometimes there are days where you end up in the Emergency Room with blood streaming down your face.

Ok, well not everyone ends up in the ER with blood streaming down their face. Some folks don't continue to have unfortunate things happen to them during survivorship, but many of us continue to struggle with side effects of a) chemo b) radiation c) surgery d) long-term hormonal therapy. Sometimes when trying to figure out the etiology of things it feels like a multiple choice exam.

So, here's what happened. I was selling some things out of the house and made a time to sell a box of foam floor mats in the parking lot of local Dunkin's. I drank a bunch of water, ate breakast and then left with plenty of time and slowly walked my way to meet the buyer carrying the awkward, but not heavy box. I walked the 400 ft, put the box down, stood up and then....felt that familiar chest tightness and the next thing I knew, I was in the gutter and could see my glasses lens on the ground. I realized I was soaked in puddle and that I had blood running down my face. I also realized a piece of my glasses was in my eyebrow...less than ideal. But, being who I am I steady myself on my two feet, tell they buyer he'll have to lift the box himself, take his cash, assure him that I am fine, I say "Don't worry, this happens all the time". And by all the time I mean that one time 5.5 years ago. I reassure that I am all set, make sure I've picked up all the pieces of my glasses, walk the 400 ft home and change my puddle soaked clothes. Bonus, I was wearing a white fleece, so you can see that my shoulder took a fair amount of the puddle dirt.

I then proceed to get in a Lyft and go to the ER. Oh, right, other fun detail my boyfriend was out of town and our roommate and my parents were not in the state. Picked a good time to pass out.

Anyways, get to the ER and one the nurse's I work with happens to be in the ER that day and she ushers me in. I let her know that I am on the poop emoji of blood thinners (xarelto) because of d) long term hormonal therapy and that means that I have to have my head scanned.

This lovely RN looks at my eyebrow and tells me that I should ask to have plastic surgery come stitch it back up. She reminds me that it is on my face. After the ER physician irrigates the wound he happily calls the on-call plastic surgeon to come in.

In the meantime, the usual. Get an IV, get some blood work, remind everyone I'm left arm only; get hooked up to the heart rate monitor, have and EKG done and then take a quick trip for a head CT. Good news then starts rolling on in...EKG normal, head CT normal (yay! not going to lie had a little fear of a brain met like any cancer survivor). Then the lovely on call plastic surgeon comes in to stitch me up.

The plastic surgeon asks if I've ever had surgery before. I tell her yes, a lumpectomy. She then asks if breast cancer ran in my family. I reply "no". She has no further questions for me and proceeds to numb my eyebrown and drape my face to do her thing. She tells me not to move, and I'm thinking "Um, yeah, you are working on my face". She stitches me up, with 2 different stitches, on for the skin and the other for where there is eyebrow hair.  When she is done I am happy to report I won't look surprised on one side of my face forever.

My ECHO is normal and they decide I can go home. My friends, as demonstrated through out the blog, are the best people ever. One had already come to meet me at the hospital in case I wanted/needed someone with me and another stayed with me at my home overnight so I didn't have to stay in the hospital. How kind are they?

The cause of my syncopal episode....unknown. Well, that is reassuring. Seeing as the last one I had they blamed on the breast cancer vaccine trial (which turns out I was only on placebo), the cause of that one also turns out to be....unknown.

The working theory is that every so often I have an irregular heart rhythm. But, it happens very rarely and so in order to prove that theory I am now hooked up to heart rate monitor at all times during the day except when I am shower. 3 leads attached via the itchiest circles ever created hooked up to something reminiscent of a pager that has a large blinking button on it that says "symptom". Every time I have a "symptom" I have to press the button and then log it in the cell phone that has to be within a couple of feet of the pager at all times. Nearly a week in and I have not had to hit the symptom button. I'll be wearing this for 30 days.

What is the cause of this potential irregular rhythm it could be from a) chemo b) chest radiation c) long term hormonal therapy d) bad luck. Or maybe there isn't an irregular rhythm. I guess we are on the hunt to find out.

As a bonus, I am now able that I have had work done on my face by a plastic surgeon.

6 Years of NED

6 years of NED...seems like we were just celebrating the final day of radiation, but here we are. On my last day of radiation, when I had to go to work after, I told myself that I would not work any other February 27th as long as I was cancer free. And so, I created for myself NED Day! I must tell you it is glorious day filled with gratitude, friends and of course...Boob Cake.

Survivorship is not a linear process. There are more good days than bad, but there are more anxious moments, more foot cramps, a lot more pills and a lot more doctors visits then there was before cancer. The more weeks, days, months and years that I put together the FOR (fear of recurrence) lessens, but it can still take hold at the strangest moments. For example, I bruised my rib this past Fall (while making bread in my mixer, I am talented, don't ask) and while I knew exactly how this injury happen it sent me down the rabbit hole. When the pain didn't immediately go away and the days turned into a week I began to think that what if this wasn't a rib injury what if the cancer had returned? Thankfully, a good nights sleep and repositioning of the way I slept helped to make certain the FOR didn't get to set up camp fully. Survivorship is full of highs and lows. And that is why I choose to celebrate the highest of the high, NED day.

I started the day with a run. Nothing says I enjoy being alive like going for a run on 11 degree day (with a negative wind chill). At one point I came around the corner to face the wind head on and actually just yelled. As if the cold startled me. But, getting an ice cream headache while running couldn't wipe the smile from my face.

Next up, my friend and I ate our weight in pancakes and tater tots and had a great time catching up. Eating good food, chatting and visiting with some of my favorite people was a theme of the day.

Then I had the remainder of the day to work on the Year 6 Boob Cake.

6 layers (oh man these cakes are getting bigger) of vanilla bean sponge, key lime curd, coconut butter cream, coconut whipped cream and toasted coconut (which is like my irradiated boob) and a key lime nipple. When it's cold outside, my brain apparently wanted a warm weather flavors, so I went with it. 

My friends then came over (on a work night no less) and very kindly helped me celebrate by eating the cake. chatting and spreading general merriment. 

As if all of yesterday wasn't enough....my wonderful colleagues in the intensive care unit where I work (and the same ICU that I once had a breakdown about my upcoming PET scan when first diagnosed), wanted in on the celebration. So they surprised me with a card and cake! (I forgot to take a picture until after we ate a good portion of it). 

How awesome are the people I work with? 

Survivorship might not be a linear process, but when your surrounded by such wonderful people there are always people to pick you up when you hit the lows and there to celebrate with you when you hit the highs! 

Full Circle Moment! Survivorship For the Win

6 years ago to the day was likely the most traumatic for my mother in terms of immediate impact. It was the day that our good family friend shaved my head.  While I felt proud to have a bald head, my mother felt like this is when I looked "sick".

Let's recap, now does this really look like a cancer patient?

Anyways, I have had my hair past my shoulders since I was in the first grade, but making it to the 5 year mark of being NED lit a fire under me to keep growing my hair out and to donate it for wigs for the American Cancer Society. So it had been a year since I cut my hair. I found I did know how to braid it, which surprised my mom.

(Sneaky way of cheering for the Red Sox, huh? Please ignore my inability to pose for photos in the above). 

So, after growing my ponytail to 9 inches, I had the same family friend who shaved my head, cut off my ponytail for me and then gave me a pretty sweet lob. 

Mom and I (of course I had her with me, still trying to help reverse some of the trauma in her mind of shaving my head), then went to the post office and sent this guy off to Pantene Beautiful Lengths.  

Then, with my hair package securely sent out,  I made sure to buy some breast cancer stamps  Did you know that these stamps helped fund the study that showed that not everyone needs chemo with a breast cancer diagnosis? How awesome. 

Making Strides Against Breast Cancer Boston 2018

Welcome to Boobtober! A month where we celebrate Breast Cancer Awareness and watch everything get slapped with a pink ribbon. I am happy to say that those in my circle are becoming more educated about products and make certain that donations from products actively go to organizations that actually do things to advance breast cancer research or take care of patients. Things like the Breast Cancer Research Fund (BCRF, there great hashtag for the month is #ResearchistheReason), Dr. Susan Love Foundation, and American Cancer Society. Because of all the good the American Cancer Society does for people actively undergoing cancer treatment and ways for people to cope with diagnosis.

One of my favorite activities of Boobtober is doing the Making Strides Against Breast Cancer walk my primary caregiver, my Mom. I enjoy doing the walk because this is where they give you a survivor sash and its great to be surrounded by other breast cancer survivor sisters (and brothers) and their support squads. Plus, its fun to watch my mom get such joy from the continued surprised looks people give the two of us walking when they see my sash! This year many people stopped to say congratulations or give a thumbs up, or communicate in some way that they were excited for you.

I went with the bandanna this year instead of a cape and you cans see part of my survivor sash sticking out. The weather was gorgeous and it's rewarding to see so many people out supporting the cause.

The Lahey 5K 2018

Raising money by baking, running with good friends and celebrating the hospital that keeps me cancer free? Sign me up!!

Photo provided by Johnson Photography 

For the FIFTH year team NED (No Evidence of Disease) was in full affect. And we managed to raise $3,700 for the Lahey Health Cancer Centers. Not too shabby. Over the 5 years of Team NED's existence we have raised >$15,000 for the cancer centers. Slow and steady we keep the money flowing.


Our annual bake sale ended up being a rousing success, not surpassing last year, but still with an impressive haul.

Check out all the baking the RD's did:

The biggest hit (outside of the granola that we can't keep in stock) was oreo stuffed chocolate chip cookies. Will need to remember that going forward!

And then came the actual race. And I knew that my training was sub par (iron deficiency anemia had started to fight back) but had been getting slightly better......and I tied my personal worst! Not terrible but definitely not good (still managed 8:30 min/mile).

Photo provided by Johnson Photography

It was great to see all the survivors and supporters out at the walk/run. It's great to see many familiar faces and more and more survivor shirts year after year. 

Go Team NED!

Photo provided by Johnson Photography 

The 5 Year Squish

 I have spent a fair amount of time celebrating reaching the 5 year mark; boob cakes (5 layer, chocolate raspberry moose cake), parties, vacations....

But, party time was over and it was time to prove that there was nothing but boob in my boobs. It was  time for my annual mammogram.

I showed up for my appointment on Thursday and per usual was a little bit anxious. I cut the greeter off mid speech to let her know I didn't have deodorant on, I didn't need the mammowipes and this was not my first mammogram. She smiled kindly at me and left me to put on the dreaded pink johnny.

I take a seat in the waiting room and fight the urge to wave at the other woman who are waiting and can't help themselves from staring. I think about what may be going on in their heads; "Hmm. She looks young for 40 (or as my age starts to creep closer to 40, I like to think this)" or "She must have a family history"or "I'm anxious about my own test I don't even know that I'm staring". Either way, inventing other peoples internal dialogue helps me pass the time.

Then they call my name. The mammogram tech introduces herself to me and lets me know that she is pretty new and will have someone check the films before I go back to the waiting room. I let her know that she needn't be afraid to hurt me and that she should do whatever she need to get the pictures. I also tell her that all of my markers are very close to my chest wall so she can do what she needs to get them. She looks at me a little surprised, but agrees.

Then the usual; relax this shoulder, squish your face against this plastic thing, lets put this boob in a vice and of course don't breath (like I could if I wanted to). My scar causes some issues on the right side, so we do those pictures again. Then this lovely new tech goes to get someone to look at them, and it walks my mother and I's favorite mammogram tech. What, that is a totally normal thing. Most mothers and daughters share favorite mammogram techs. It's totally regular.

The new tech then starts to introduce me to our fav tech and she stops her and says "No worries, I know her. Nice to see you again." She helps her show the positioning on someone like me (small boobs, markers close to chest wall, dense breasts) and they take a couple more photos. I also note that the pressure on the machine is cranked up to 18 psi. 18 lbs per square inch.  Now that's a vice.

They are both happy with the pictures and I go back into the waiting room. And everyone turns to see who come through the door. You have to love the amount of anxiety in the waiting room. I park myself in a chair and wait.

Then the door opens and the fav tach walks in, just looks right at me and says "they want more".  My heart drops to my stomach. When we get into the exam room she tells me they look fine, they just want to see the marker closest to the chest well. My heart moves back up to my chest.  On which side? Left. Ok, Here comes another 18 psi and this time an additional plastic tray. She gets the picture in one shot.

10 minutes later someone else comes in to let me know I'm free to go. She also asks me to remind my doctor to put the order in for next year. I just say "ok", like sure lady, like between my oncologist, surgeon and pcp someone will forget to schedule me a mammogram. But, I'm bruised and free to go back to work.

I am sore, but I wasn't too sore to put a sports bra on and run 3 miles that night (and completed my virtual 5K for BraveLikeGabe.

I still had a lot of adrenaline to run off. And for the first time in a couple of weeks I slept without having super bizarre dreams; so I guess I was more worried than I thought.

5 Years of NED

5 years ago, I remember walking into the radiation suite for one last time. I remember being so excited that my hair was growing back, that I only had to wear the pink johnny one last time and that I had finished. I had made it though surgery, 4 rounds of chemo and 30 radiation treatments.

My mom reminded me how when I first diagnosed, she looked at me and said I wish it was five years from now and this was all behind us. And.....................now it is.  It's amazing.

I started the day wearing my Team NED t-shirt and matching one of my favorite people in her Team NED tshirt

This is the extent that the toddler was willing to have her picture taken in the morning. She was still mad that her grandparents had brought me a present in the morning and not her (she did, however, get a cake pop). 

I had a grand old time celebrating the day with my family. I was staying at my brother and sister in laws and spending as much time with the tiny person as possible. We had a dance party in the kitchen and had an amazing dinner. 

I mean who wouldn't love hanging out with this crew? A 3 year old who has tiaras for everyone and every mood? What's not to like? How could you not have a blast? 

So, the boob cake has to wait a couple of weeks this year because 5 years was too important not to be surrounded by my family. 

One of my breast cancer peeps hit her 5 year mark this year too. As we both know, that with ER/PR+ breast cancer has a chance of recurrence throughout the lifetime, but we have both said we are loving the 5 year feeling! 

Also, in celebration, we got the Team NED fundraising page up and running to raise some money and get more people all NEDded up and able to celebrate their 5 years cancer free mark. 

So ya, I'm lovin' that 5 year feeling. 

The Five Year's of NED Celebration has begun

Yes, I am a few days early. But, as the 5 year anniversary approaches, I have had a weird mix of emotions; the majority of gratitude, still a touch of anger (when I take my poop emoji shaped medicine), and lots of happiness. 

Anniversaries also lead to a lot of reflection. It's amazing how something could seem like a lifetime ago as well as that it happened yesterday. I get a little lost in thought; while riding the bus to work, I remember the mornings riding in bald, when the other riders left me a seat to myself; willing myself to get to work on days when I didn't feel well. 

I also remember the feeling 3 weeks after the last chemo treatment when I woke up and felt normal and I hadn't been aware of how weird I had felt. 

In order to leave my office at work I have to go down the hall that I took every morning to go to radiation. I remember laying on that table day after day, wondering if anything was happening and then towards the end marveling at how hot pink my skin had become. I remember appreciating that the the radiation techs also loved 80's music. 

One of the weird, new normal things, that happens with my right arm and pectoral muscle is that I don't have all the feeling in my right triceps. It never came all the way back. I didn't even think about it until I was teaching 20 nutrition students how to do physical exams and had to direct the students away from my right arm, because I couldn't sense if they were testing it correctly. The other side effect of surgery and having the pectoral fascia removed (because my tumor was so close to my chest wall) is that occasionally my pectoral muscle gets stuck and it takes some weird shoulder movements to get it unstuck. 

In the 5 years I have learned that 1) I am still a hypochondriac, but 2) there are times that I am really correct and their are some really scary sh*t that happens. I have also learned that having breast cancer on your past medical history makes everyone freak out for every ache, pain and irregularity. I have gotten used to scans, exams, blood work and even colonoscopies. Through it all, I am still grateful I am here and that I beat cancer. 

I beat cancer. It's been 5 years and it's still some of the sweetest words you will ever hear. Now, is the time to celebrate. Now, is the time to spend time with friends and family. Now is the time to buy the good seats to see Bon Jovi. Now, is the time to be grateful for having more time. Now, is the time. 

Editors note: Boob cake to come in a couple of weeks

Hair Watch 2018

Unlike the previous hair watches, where I was singing Wilson Phillips  and updating the world that I was bald I have a full head of hair. However, as these episodes were more than 5 years ago, they still seem like they were yesterday.

I really did not mind being bald. I did not enjoy the growing back in phases process where I had mostly hair on my neck and some on the sides.

However, I am fully aware that not everyone fully embraces being a baldy. That is why as part of my upcoming celebration of 5 years of NED includes growing my hair out for donation. My good friend Mary has done this a couple of times and gave me the details on the Pantene Beautiful Lengths program.  You need at least an 8 inch ponytail.

Guess what? I have a 5 inch ponytail right now (which is totally crazy for me and the longest my hair has been in about 30 years).

This is part of my giving back in the 5th year of NED.  Looking forward to finding more ways I can give back.

Here's to 2018

After a great holiday season spent with good friends and family, I am looking forward to the things to come in 2018.

I've adjusted to my new, new normal; cancer survivor on a blood thinner. I try exceptionally hard not to bang my head on ice (because brain bleed is now high on the list of hypochondriac concerns added in 2017) and do the usual new years things; Try to eat more vegetables, get back in shape (two jobs this fall killed my workout schedule), spend less time connected to my cell phone.

However, there are new items that I'm looking forward to in 2018, mainly planning how to celebrate reaching 5 years of being a cancer survivor. What kind of boob cake should I make? How many vacation days do I want to use? How great is it that these are the biggest issues in my life? And working on more ways to do good for those whose issues are bigger than boob cake flavors.

Happy New Year

5 years ago today

5 years ago today I had my last chemo infusion.

I spent most of today writing a final exam for the class I'm teaching this semester. 5 years ago, I wouldn't have even thought that my side job would be teaching at a University. I'm not sure that I would have even applied.

When I told my bf of the survivorversary he broke out the good stuff

Sparkling grape juice and dark chocolate. 5 years ago today I couldn't eat chocolate, it destroyed my insides and tasted gross. 

Here's another victory; my mother forgot. December 10th is no longer an ominous day for her. I'm happy, healthy with a head full of shoulder length hair. She cannot believe she didn't remember the date, as it seemed impossible to be able to forget when I had finished. 

And there was only one small reminder of the long term effects of cancer treatment; I washed down my blood thinner with the sparking grape juice. But, I smiled while doing it. 

5 years has come fast,  especially from the days where I just kept singing "Just keep swimming, just keep swimming". 

I'm so happy to be in this place. 

Making Strides, Celebrating all the Birthdays, XRT follow ups, people on blood thinners should not be allowed to used mandolines, and recent news that will hike up the FOR meter

Been having some fun living my life without biopsies, that I have some catching up to do.

Making Strides Boston 2017 

Mom and I went again this year. I got my survivor sash and a cape. Yup, a superhero cape. It was a brisk morning, but I do feel like I'm advocating for the survivors under 40 while I'm out there walking around. My mom's favorite part is how many stares and mouths agape that I get walking around with my survivor sash. This year, on the way home an man in his 50/60's kept hitting his wife until she turned to point me out. I just smiled and waved. The barista at Starbucks asked me if I dressed like that ever day. I'm not going to lie, I considered making the cape part of my daily look. 

Celebrating Birthday's

I love that the American Cancer Society once had a slogan "Here's to more Birthday's". I had never really been one to celebrate my birthday, but now I do make sure I do something special, eat some treats and see some of my favorite people. 

Celebrating my birthday, however is nothing compared to how much I love celebrating my niece's birthday. She turned 3 this year and Mom and I flew down to Arizona for a few days. It was the first flight I'd taken since being diagnosed with DVTs and I wore compression stalkings on both flights. On the lead up to the flights my left calf was being all twingy with pain, but I think that it might have been all in my head. I was nervous to fly, but knowing that I was going to go get quality "Auntie Time" eased the nerves. 

Radiation Oncology 

Well, I never used to believe other survivors that there would be time that I wouldn't think about having had cancer every day, but I did. Now, I've transitioned into forgetting that I have oncology appointments! The pendulum may have swung too far. So, at my rescheduled appointment with my radiation oncologist all was well. We talked about how good my boobs looked, how happy I looked and when my next vacation was. Who doesn't want to start a Monday morning like that? 

People on Blood Thinners Should Not be Able to Use Mandolines 

I love kitchen gadgets. Love them. My boyfriend has a mondoline for very fine, constant and easy slicing. Well I was making an apple pie for Thanksgiving (it is less than two weeks away people, yes I am a planner) and despite his warnings that it wasn't really necessary and that he was worried about me using it, I sliced my finger on the 3rd section of apple (so like 45 seconds into using it). I watch my thumb slide right into the blade and then...... oh my.  I haven't had many instances of bleeding like that. 

Just kidding, it wasn't that bad. But it did involve a trip to CVS for some blood clotting gauze, butterfly bandages and fingertip bandages. Oops. Don't worry the apple pie was unharmed.

Jacking up the FOR 
Things I could have gone without. Studies are showing the ER+ breast cancer can recur 15-20 years after treatment.  Woman who had positive lymph nodes had the higher rate of recurrence. Well, that will give you some pause and make you continue to appreciate each and every cancer free day you got going on.

Makes me wonder, is 10 years enough on Tamoxifen? Should I just take that and my poop emoji shaped blood thinner 4-eva? Well, better make sure I don't miss my medical oncology appointment (in March!) and ask those questions. 

The trials and tribulations of navigating the Cancer Survivor world-AKA we'll just biopsy it

It was quite the summer; DVTs, blood thinners, colonoscopies and uterine biopsies. I began to feel like a human science experiment. Thankfully everything is benign and per usual "We would just like to monitor you, given your history". I swear I could make a template for some of my health care provider visits.

This summer I also continued to collect specialist. Now that I have the cardiovascular doctor, a gastroenterologist and now an endodontist.

An endodontist you say? Well, my adventures in dental examinations continue. I went in for my annual cleaning and they took some X rays, and then it began again.

"Hmm."

Crap. "What?" (Slightly concerned, but people say that a lot to me)

"Well that spot on your font tooth is still there and we think you should go see a specialist to see if you need a root canal." A root canal on my front tooth? Well that sounds all kinds of fun.

Off the endodontist I went. She was a lovely woman. One of the members of her staff looked at me and asked what bus route I took. Turns out we pass each other every morning. Yay bus people! (Those who ride public transportation together, stick together).

This lovely endodontist decided  to take her own 3D pictures of my jaw and there it was again.

"Hmm"

Crap on cracker. "What?" (Now concerned).

Well, she showed me what the imaging she had taken and it looked like a hole in my jaw. Right below my front teeth. A hole? Are you kidding me?

She then went through the options it could be and wrote them down 1) Dental thingermerbobber (didn't stick with me) 2) Something that would be replaced with putty 3) Bone MET. I gave her my best "really?" face. She said "Given your past medical history we do need to investigate further and we may need to biopsy your jaw". That made me start routing for a root canal. But, the specialist needed to send my films out to a specialist to have them read it further. Sounds about right.

So then I wait for the specialist to read my special dental films from the specialist. I am really good at waiting for results at this point.

1 week later the endodontist called. "Great news. It's a benign cyst. Nothing to be done. Don't let anyone ever do a root canal on that front tooth".

Winner winner chicken dinner.

Talk about the ultimate outcome. Glad it was just weird films and nothing else. Glad that it didn't come to a biopsy either.

Now back to living my life and eating crunchy and sticky foods with a complete jaw.

#BraveLikeGabe

I've had a hard time getting any consistent running going since the DVT's. Not sure why, but have been walking more than anything. To say my fitness is seriously lacking and I have been uninspired would be correct. 

However, I did follow the extremely inspiring story of Gabe Grunewald. The best way to understand her story is to read the great Sports Illustrated article "Athlete gets cancer. Athlete fights cancer. Repeat, again and again..."  It will make any cancer survivor glad they had a common, well researched with well defined treatment. It made this one, very happy that a)I've only had cancer once b) it was the most common kind. 

Today, one of my runner friend's posted the video of Gabe's story and her hunt to go to USA's. 

She may not have secured the qualifier this year, but because so many other athletes didn't get the standard her previous time got her into USA's. After a couple rounds of chemo, it ended up being more of a victory that she was out there (and for the record she still ran really fast!) 

So, I sit here on a Friday, putting a training plan back together. Trying to regain some fitness. I've already proven that I am no longer as quick as I once was, but I do miss have baseline fitness. And I am inspired. 

If you too are inspired you can donate to Gabe's cancer journey you can do so here. 

Diagnosis Day-5 Years Out

With the anniversary of my diagnosis day (August 8th, 2012 at 3:30 in the afternoon), my mother and I were discussing the day. She remember's sitting with me wishing it was 5 years from then, when she knew everything would be ok (forever the optimist, that mother of mine).

5 years after hearing, "you have breast cancer". 5 years after being forced to face my own mortality and choosing to let people and all the good in.

5 years of #cancersurvivorproblems.

Now, this is another thing that keeps on growing. When you have had breast cancer and it surprised your doctors, they spend a lot of time trying not to be surprised by things. So, when you are physically active and you still develop blood clots on your long term hormonal treatment, everyone is surprised afain. Then they put you on a poop emoji looking blood thinner. And that's when people start checking on everything (#cancersurvivorproblems).

Because my iron labs have been a little off multiple people advocated that I have a colonoscopy. Oh yeah. I got to drink this 4L jug of poop juice...

It is pictured here with my clear liquid diet and some items featured in my low fiber diet that needed to be consumed leading up to the exam.

And guess what? The anticipation of the colonoscopy is the worst part. The actual prep, isn't pleasant, but for a constipated lady like me (#cancersurvivorproblems), it did get rid of all my belly pain. And I was awake enough that I got to see the inside of my colon. (The science nerd in me was so amped). And there was nothing wrong with it (not just per my visual inspection, also per the gastroenterologist who did my colonoscopy).

5 years ago, I never would have imagined that I would get excited when I put a couple of months together without a doctor's appointment or test. I never would imagine that I would be living with my boyfriend or making travel plans to celebrate my niece's 3rd birthday. I never would've imagined that you can experience overwhelming gratitude about being alive at the same time you feel like human science experiment, but I'm glad I get to.

And who would have known 5 years ago I would wake up singing soulshine. I can deal with all the #cancersurvivorproblems because I'm still here to have them, and it sure is better than rain.

Why I Love to watch Playing House

I've been a big fan of USA's Playing House a comedy about two best friends and their travels through life and love of Kenny Loggins. These are two of the funniest people you will find on television.

I have been patiently waiting a year and half for the season 3 to happen (especially after the finale of season 2 featured Kenny Loggins singing my Mom's favorite song).

And then in May, my facebook feed had Stand Up to Cancer features Actress Jessica St. Clair Gets personal about breast cancer. And featured this blog post from her.

It was beyond relateable to me. Stage 2b ER+ breast cancer. The love of the Great British Baking Show. The gratitude and the self deprecation, was spot on and I got very excited to read that Perham and St. Clair would be writing their experience through cancer into the season.

I couldn't wait to watch......and I was not disappointed.

USA let every episode be available on demand and I blew through the seasons and I have watched all 8 episodes twice so far. What I really enjoy is that they show the character Emma living her life through cancer! It doesn't become the focus of the show.

You can tell that they really have lived it, and it's so appreciated. My favorite episode is "Ride the Dragon" as to me it had the most relatable moments.  Emma (St. Clair) has finished a chemo round and when she walks into a room/party of women people don't know what to say to her. And it takes Emma making a demand and using "come on, I have cancer you have to do what I say" to break the ice. Oh man, been there.

Then there is the interaction between Emma and her mother. Her mother just cannot spend enough time with her and give her enough hugs. Eventually, Emma gives way and just lets the prolonged hugs happen. Done that. (love you Mom) After cancer, one of my good friend's husband let me know that he totally appreciated that I actually hugged him now and didn't just do limp arms.

Finally, the most spot on depiction was the conversation between Emma and another cancer survivor. Their conversation about living a "Hell Yes" life and that cancer changes you because you have to face your on mortality is something that sneaks up on you through out treatment, but leaves an everlasting mark. I may have rewound this conversation and watched again and again. It's so great see the humor in cancer on television and not a melodramatic sad display.

The season finale (airing Friday July 14th or available via Comcast on demand) it is amazing. It has a great celebration of survivorship, friendship and Tina Turner.

Maybe I'll rotate episodes of the Great British Baking Show and Playing House. Now, that is a happy place.

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.