Sunday, June 23, 2019

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! 

Sunday, March 31, 2019

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.

Thursday, February 28, 2019

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 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! 

Thursday, October 25, 2018

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. 

Saturday, October 6, 2018

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.

Monday, July 9, 2018

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 

Sunday, June 3, 2018

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.