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.