The Wandering Chickadee

This blog is long overdue for some health updates so let’s get into them.

All of our Boston visits continue to bring welcomed good news!! 

First, all of my sutures have been removed. All 80+ of them are gone and that feels really good. All surgical sites are healthy and healing well.  I have now transitioned to post-op checks in Boston on a more sporadic basis.

Second, is that Boston gave the greenlight to start physical therapy on my arm. This was not intended to start until after radiation, but because I am healing so well, and that I advocated for some soft tissue work on my shoulder and wrist, I get to work on the whole arm (yah!!). It is an intense course of physical therapy that I do three times a week.  

Let me tell you guys, getting mobility back in a shoulder, elbow and wrist, all of which have not moved in approximately nine weeks, is not for the weak.  Doing the smallest of movements and exercises feels like I’ve competed in a Strong Man competition on a weekly basis for the past six weeks.  Good thing I love my physical therapist! 

All of that said, I am seeing real improvements with my mobility and range of motion in my arm. I still have LOTS I’ve work to do and will not be done with physical therapy until June 2026.

As for radiation, I have completed 1/3 of my radiation treatments and they have been going well. The hardest part of radiation, if I am being honest, is the waiting room. I feel like I try to bring joy into all aspects of my cancer journey, and a radiation therapy waiting room is where I feel like joy goes to die.   It’s filled with people who I feel like cancer has robbed their joy, and that makes me incredibly sad and mad and angry. Joy, it is the one thing that I refuse to surrender to cancer. So, I just sit in my car until the last possible minute before my treatment session. 🙂

Thank you all for your continuing support! All of your kind words, check-ins, and cheering me on means more than you’ll ever know!

Talk again soon, Natalie

Sometimes the best made plans have to change, and in those moments of change, you have a choice; you can be angry and disappointed, or you look to find the positive.

And I…. did a little of both. 🙂

You see, the original plan was for me to complete my radiation treatments in Boston.  It would be something I was going to be doing solo; living at the American Cancer Society’s Hope Lodge in Boston while completing my radiation treatments at Mass General Hospital. In June, when we created this plan with the Boston team, it felt very doable and the right thing we needed to do to tackle this aggressive cancer.

However, post skin flap surgery, this once “in theory” solid plan was slipping away.  We did not realize the level of limited mobility I would have on my right leg a.k.a. the donor site for the skin flap.  To give you perspective, two weeks ago walking 25 yards to the mailbox and back in my driveway felt like I had completed a marathon and navigating Mass General Hospital for post-op appointments still required the use of a wheelchair. Oh, and let’s not forget that even as I write this today, I still require help putting on my socks and other things.

So… navigating radiation treatments in Boston solo was looking more and more like an impossible task.

And at the same time, the universe was dropping little hints that perhaps completing radiation at home was exactly what I needed.  

Obvious things like getting a green light to do physical therapy on my leg, an OK to resume working with my acupuncturist, chiropractic doctor and massage therapist (in areas away from my surgical sites), and being about four weeks away from getting off a waitlist to work with an oncology-focused mental health counselor, etc.

And there were plenty of not so obvious things; things like sleeping in my own bed, the good belly laughs you get from being around family and friends, and being home to see the beauty of foliage in Maine. This list could go on and on.

Last, and most importantly, being home for radiation treatment would mean I would be home every day and that that stability for my daughter would mean a lot for both her and me.

So… after my husband and I made the decision to re-examine radiation up here in Maine, it was full steam ahead and advocating with my Boston team that doing radiation at home was exactly what I needed.

Thankfully, I am advocating to work with a radiation oncologist, who trained with and under some of the doctors on my Boston team and this past week, we got to meet with him.  We learned radiation treatments would not look much different than what I would get in Boston and that he was willing to consult with the Boston team to ensure things like vectors and laser placements would be as close to identical as what the Boston team would use.

And with all of this information, we felt comfortable completing radiation treatments at home. I also think it’s important to note here that the Boston team is also supportive and understanding of the need to change this part of the treatment plan.

Well, it will still be as intense and hard as if I were completing my treatment in Boston, I know, at a level that I can feel in my bones, that being home to do radiation will be the best thing for me.

Thanks for all the well wishes and continued support! 

Much love, Natalie

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Home.

It feels so good to be home. To be with my family, to be with my creature comforts, and to sleep in the silence that you often take for granted until you spend night after night, listening to the moans and groans of a roommate and the annoyance of alarms going off at all hours.

This second surgery for myxofibrosarcoma, the doozy that I have been dreading, was another successful one. One that went so well that I was able to be discharged one day earlier than anticipated.

But don’t let the successfulness or the early discharge fool you, it was still a doozy. My left elbow is now covered with a 5 inch skin flap taken from my right upper thigh.  A skin graft of my inner left forearm was completed to move an artery from my inner left forearm to my elbow to support blood flow of the skin flap.

And…I have over 80 stitches between my left arm and upper right thigh, drains to support healing, and a splint to ensure that my arm is immobilized for several weeks.

To be honest, the hospital stay was probably the hardest part of the surgery. I have never needed to stay in the hospital before the way that I needed to stay as part of my recovery from this surgery.  It was equal parts humbling, scary, and comforting to stay there.

The care I received while staying on Ellison 14 was phenomenal.  Gil, Garry, Ryan, Tia, Jasmine, and Madison along with Marie and Wilma are just a few of the nurses and patient advocates that took care of me. These wonderful people helped me when I was at my worst and laughed with me during the fun moments.  Their kindness is what I will always remember long after the memories of catheters, splints, and relentless Doppler checks fade away.

And while I will always be appreciative, too, of the renowned plastic surgeons that were able to put my elbow back together in what feels like some twisted version of Humpty Dumpty,  I hold a special place in my heart for a first year resident, a Dr. Rodriguez.   Dr. Rodriguez helped me advocate for myself on several occasions, probably going out on a limb that I’m not sure he had with more senior doctors about my requests to do things.  And when the memories fade here about the things that he helped me advocate for, what will always stay with me it’s the way that I felt heard when we talk.

And my one regret is that I never thanked him. He wasn’t on rounds on the day of my discharge.  🙁

So..I am home now and grateful to have the last surgery now behind me. These next several weeks are pretty low-key as my job is to heal both my Humpty Dumpty elbow and the donor site on my thigh. 

The next step is to get cleared to begin moving forward with setting up radiation. But until then, I am enjoying being with my family, with my creature comforts, and sleeping in the quiet and stillness of my own bedroom.

If you were looking for ways to support me and my family during this time, please click on the link here to see ways that you can help us.   Your generosity, your help, and your yummy meals mean the world to me and my family. Thank you!

Good news.

This week, we received the pathology report back much sooner than we anticipated and it was filled with good news. The margins for this first surgery were clear of cancer! My team in Boston planned on needing a second, and possibly a third surgery to get clean margins, so to get this kind of news, and to get it early, is amazing!

I knew we would get clean margins in this first surgery. I can’t explain how I knew we would. It was just a deep feeling in my bones, an intuition of sorts, that told me it was a successful surgery.

I knew the good news would quickly move on to the overwhelming organizational nightmare that it is this upcoming second surgery. So I made sure to take space and relish in the moment that part one of this three-part treatment was done. 33% complete!

So what’s next?  Part two of my treatment is what is next. And part two… Is a doozy.

I will have my second, and hopefully final, surgery as part of the treatment plan.  This surgery will be with the plastic surgeon and will involve a skin graft on my elbow.  The surgery is quite intense and intricate and…very long. My surgery is expected to take 6 to 8 hours. I will be spending a week at Mass General recovering and being closely monitored to make sure the skin graft takes on my elbow.  

You heard that correctly: a one week stay at a hospital. The sheer volume of my to-do list to prepare to spend a week in Boston, while my daughter remains here in Maine is, to say the least, overwhelming.

Fingers crossed that I will be able to get fresh air each day. Being cooped up in a hospital for a week is not my idea of a good time but I understand why I need to remain there. So… Send all your good energy and vibes to Boston that I get to get outside for a little bit each day!

Once I am discharged from the hospital, I will have a 4 to 6 week long recovery here at home.  And if I’m being honest, it is this recovery that I’m looking forward to the most. To put all the surgeries behind me and to prepare my body as much as I can for the upcoming radiation feels like a good spot to be in. 

If you were looking for ways to support me and my family during this time, please click on the link here to see ways that you can help us.   Your generosity, your help, and your yummy meals mean the world to me and my family. Thank you!

As always, thank you for following along! ~Natalie

Help.  Such a simple word but it can be, at times, so hard to say and even harder to ask for it. 

Before I share some ways to help us, I need to acknowledge this community.  You have shown up and keep showing up for us.  I am deeply moved by all the help and generosity this community, this village, has wanted to give me and my family.  From family and close friends, to colleagues and networking connections, from our school community and to those of you I have connected with through The Wandering Chickadee on social media…THANK YOU!

And with that, we do need help.  Below are some ways that, if you are moved to help us, would be much appreciated!  

Hotel and Gas Funds: Unfortunately, we have many, many trips to Boston ahead of us and some that will require overnight hotel stays.  Thankfully, we receive the hospital rate at many of the hotels near Mass General so that helps us a bit.   If you would like to help us with these costs, the easiest way to help is to donate to us through Venmo.  We are choosing Venmo as our preferred vendor as other platforms, like GoFundMe and MealTrain, take a portion of each donation.

• Venmo Username: @skrmaine
  • Last 4 digits of cell phone: 9399

Conversations: Any distractions are much appreciated during this time!   Please reach out via email (natalie.anneliese.flynn@gmail.com) or text me to coordinate dates and times.  

Food:  If you are someone who is local, loves to cook, and wants to whip up a meal, please do! My only request is for meals to be gluten free.  Check out the meal train link to see some times that we could use a meal.  

*If a gift card is more your vibe, please no Door Dash and Uber Eats ones.  Unfortunately, it’s incredibly hard for these businesses to locate our house. 🙁

From the bottom of my heart, thank you for all your help and support!  You have no idea how much it means to us!

Forever Grateful,

Natalie & Family

The first chapter of treatment has begun. 

I had surgery on Thursday and it all went really well.  I came out of the OR with a wound vac over my left elbow, as expected.  I was up and moving around a couple of hours after surgery.  Pain and nausea were well controlled.

I got a lot of visits from curious residents and medical students since my case is a rare one.  Felt like I was in an episode of Grey’s Anatomy…except McDreamy didn’t make an appearance!

I was seen by the plastic surgery team to begin making plans to patch up my elbow once we get the OK by the orthopedic oncology team.

I was discharged on Friday after a bit of a delay in getting the home version of the wound vac but still managed to beat the rush hour.  I am home now and just resting.  The recovery from this surgery is actually better than the initial cyst surgery in May.  With the wound vac, I have no cast or sling; only an ace bandage covering the area.  The pain is very manageable at this point

A lot of you have reached out to see about ways you can help, I should be getting this out later this weekend.  

Thanks for all the love and support!

~Natalie

I’ll be honest…I’m kind of dragging my feet putting my thoughts together after my last Boston visit.  Not because we received any bad news (actually, the opposite) but because it’s all starting to get real.  Like real, real.

And with the reality of the treatments beginning soon, grief has been hiding around more corners than I would care to admit.  Grief can sometimes be rude, very rude, sneaking up at the most inopportune times, like when I am about to start a squat set at the gym or blowing out birthday candles.  And it’s for petty and serious things alike; like changing up all our summer camping or for finding/making plans to support my daughter through a journey I thought she would never have to go on.

I digress…

Our Boston visit, complete with seeing a car on fire and then watching it explode on the side of the highway, a SUV crushing their Thule car rack, and subsequently getting stuck in the parking garage, and an 18-wheeler tire in the middle of the turnpike, is always eventful, even without the medical stuff.

Ok..let’s talk about where we are at with MFS:

We learned that MFS has NOT metastasized to my lungs (yah for that!) and that the sarcoma is grade 3 (the most aggressive).  My oncologist tends not to stage this type of cancer in the way I’ve come to know of “traditional” cancer staging but rather has it metastasized or not.  The treatment plan remains the same as previously discussed, with the first surgery to come in just a couple of weeks, and we shared with the Boston team that we intend to pursue radiation treatments in Boston later this year.

Because MFS has a high recurrent rate, I punched my ticket for lots of MRI and CT scans.  MRIs for my elbow and CT scans of my lungs will be every 3 months for 2 years, then every 6 months for 3 years, and then once a year for what feels like, and probably is, for the rest of my life to monitor whether or not MFS decides to return or not.

The high recurrent rate is also the reason we are pursuing radiation treatments in Boston.

I also think it’s worth noting that while we were awaiting the results of the images and this visit to Boston, I had annual blood work completed with the medical provider who oversees my autoimmune disorder (Hashimoto’s Disease).  

Now, you would think that all the inflammation markers we test for would be off the charts (or at least somewhat wacky) because of MFS but..NOPE. 

My inflammation markers are the LOWEST they have been in 7 YEARS!  And… every other test is in an appropriate range of normal!  

These numbers deserve some acknowledgement because this just didn’t happen by chance.  Not a single bit.  20 months ago, I recommitted to a mostly gluten and dairy free diet (because a good french baguette, crunchy spicy tuna rolls, and cheese are worth a little bloat), no more alcohol, weekly strength training, conditioning classes when I can, and better sleep habits.  

What this past week has shown me is that I’m a HEALTHY and STRONG person with cancer and this diagnosis is such a loud reminder to continue to keep my body healthy and strong.

And that brings me to another thing…I am beginning to re-think the term “fighting cancer”.  I know I used this phrase a couple of times in my first blog; probably because it’s the cliche thing to say when you are diagnosed with it. But it just doesn’t fit me. I wanted it to, just like I wanted low rise boot cut jeans to work for me in the early 2000s, but it just doesn’t. Truthfully, I don’t even know how cancer fits into my identity at all right now.

All I know is this: I can. I will. End of Story.

Thanks for reading!

~Natalie

*MFS stands for myxofibrosarcoma (mix-O-fibro-sarcoma)*

While you would think that many questions about treatment plans would be a priority for me with the medical team.  They weren’t.  I wanted to know more about the complicated relationship between Larry (aka the cyst), MFS, and the refrigerator door incident.    And here is the down-and-dirty…the cyst was NEVER a cyst, it was always MFS.  The refrigerator door was just an unfortunate incident and the MFS was a result of just plain old, bad luck, as one of the Oncologists put it.

We also learned that MFS is very rare, as only 500 people in the country are diagnosed with it each year. 

Treatment is going to be a bit intense and here is what I know today with the caveat, that it only takes one one MRI or CT scan to require a hard pivot to a new plan.

Speaking of scans.  I will be getting CT scans of my chest pretty routinely (like every 2 weeks) for a while and then the scans will decrease in frequency to every month, then every 3 months, then every 6 months and so on.  For the next 5+ years of my life, I will have some routine dates with a CT machine.  Why?  MFS has a high recurrence rate and can metastasize in your lungs so the medical team will keep tabs on what my chest looks like. Fun.

Ok, so what is the treatment plan as of today?

It will start with another elbow surgery to ensure that as much of the MFS cells are removed.  This will be a much more intense surgery as they need to expand the area around my elbow to include an area where my drain from my previous surgery was put in. There is some concern that the drain may have dragged (my words) cancer cells from Larry’s home on my elbow to further up my arm. (Remember, Larry was suppose to be a benign cyst on my elbow and never a rare sarcoma. So putting a drain in made sound surgical sense.) If margins are cancer free then that will conclude the surgery portion of the treatment.  If not, more surgery lies ahead for me until margins look good.

There is a bunch of temporary closures and wound care with the surgery while the soft tissue is sent to pathology to look at the margins. I will skip over those details because..well, it’s probably the part I’m LEAST looking forward to and are just… pretty gross. A plastic surgeon will join the team at this point and I will receive a skin graft on my elbow as the result of the surgery.

Once surgery is done, I will need to heal from it for about 6-8 weeks.  After that, I will undergo rigorous radiation treatment.  5-6 weeks, 5 days a week-kind of rigorous.  

When we were on our third appointment of the day in Boston, learning about the treatment plan, I became so overwhelmed.  Not because of the intensity of the treatment but because of the overwhelming logistics of commuting to/from Boston on a frequency I am not accustomed to, logistics of daily radiation treatments most likely in Boston, and logistics of maintaining a sense of normal for our daughter. 

It’s a lot.  It’s going to be a lot.  As I’m sure my colleagues would agree, I’m not one to delegate easily and like to do a lot of things myself.  And the harsh reality is..I’m going to need help. And I am reminded, that my husband, daughter, and I have an amazing support network and help is just one phone call or text away.

So..I’ve started small. Tasking people with telling others about my news. Team leaders, of sorts, that get all the nitty-gritty details and who can relay to others. And while today, as I write this, I’m not sure beyond that what help needs to look like, I will lean into family, friends who are like family, and strangers who are like friends, and ask for the help.

As always, thanks for following along! ~ Natalie

*MFS stands for myxofibrosarcoma (mix-O-fibro-sarcoma)*

Unfortunately, I have known too many friends and colleagues who have “made the trip” down to Boston.  The trip to see some of the best doctors in the world to get answers and treatments for cancer, rare diagnoses, and many other ailments.

I always, for better or worse, considered myself lucky; lucky that I didn’t need to see experts or have any complicated diagnoses.  But now, I have joined the club of those that have made the trek down to Boston for medical reasons.  

As we drive down to Boston, I am distinctly aware of the place that I am in; a limbo of sorts between what was and what is going to be.  An official departure of life as I knew it but not yet at an arrival of what life is going to be.  This feeling is familiar but I can’t place where I have felt this before.  It’s only once my husband parks the car in the hospital parking garage, and we grab a quick bite of our packed lunches, do I remember where I have felt this before: arriving at the labor and delivery unit for the pending birth of our daughter.  

While nostalgia draws me into that time and lets me linger, it also distorts my memories.  Today, the memory of that limbo is heavily filtered where everything about that time seems perfect and synced to some Enya song from her Memory of Trees soundtrack because we were able to have the outcome we desired; the healthy arrival of our daughter.  In reality, I was as scared back then as I felt parked in the truck today. 

Anyway, I digress…

I am under the care of a team of doctors at Mass General Bridgham, specifically the Orthopaedic Oncology Department and Center for Sarcoma.

I wasn’t sure what to expect from this initial team meeting.  I had images in my mind of sitting in big oversized chairs with a doctor behind a dark stained mahogany desk surrounded by academic textbooks handing out a rigid, void-of-emotion, treatment plan. 

In reality, it was the complete opposite. 

We were brought into a sterile, small exam room where my vitals were checked like I was being seen for strep throat and then a series of casual, yet overwhelming, conversations took place.  

If you swapped out the sterile exam room for a campfire and replaced the notebooks and pens in our hands with beers, you would have never guessed that we were talking about treatment for a rare sarcoma.  It was THAT casual.

Needless to say, we were really impressed by the team.  Impressed, of course, by their expertise but also for their sincere empathy and compassion about this journey I would soon be embarking on.

So, who makes up my medical team?

• An Orthopaedic Oncologist:  This is captain of the team, so to speak.  He will be overseeing my entire care, along with my surgery (more on that later).
• A Plastic Surgeon: Part of the Surgery Team.
• A Chemotherapy Oncologist:  While I will not be receiving chemotherapy, this Oncologist will follow my journey, receive updates on my care, and be there should I need that course of treatment.
• A Radiation Oncologist:  I will be working with this Oncologist later on in my treatment.
• A Social Worker:  I will be working with a social worker to navigate some of the internal systems of care like housing, gas cards, etc.

I feel like I have the BEST team to help tackle this cancer shit.  It feels like a rock star team, the best minds working together to give me the best possible outcome. More to come on treatment in the next post.

As always, thanks for following along! ~ Natalie