HiC-cUP

Let’s talk about hiccups…I’m sure you can summon up a memory when these mischievous tricksters showed their faces in your day?

More recently I’ve been around babies. And one thing I’ve noticed is those little cuties get hiccups A LOT. And I did some research and found that while common, it is not well understood why they get them so often. Heck, it’s not certain why we get them, right!?! So, no surprise there. But I sit there looking at a baby with hiccups and I think, “oh no, how can I help you! Are you okay? Does it hurt? You know because my hiccups HURT.” Then I try saying, “boo” to scare the little nugget, but not scare them. Just a “boo” that makes the tricksters scram but not make baby cry. So far, the hiccups are winning. Does that make me a boo-er? Like someone who is known to scare babies?

The times I have most often had hiccups is after drinking alcohol. And these monsters hurt. I mean hurt. Whole body hurt and when they happen, they sound like devils. But what do you say to that? How do you address a hiccup? … Bless you? Salud? Are you okay? Would you like a glass of water? Can I elevate your feet? You should do a handstand while trying to eat peanut butter. How about we go play (secretly in your head, it’s I’m going to scare the sh*t out of you, but I’ll tell you I’m doing something else).

I remember. Several times. Getting hiccups at my grandmother’s house. And I can’t remember when I tried doing a handstand against the wall (please, ya’ll I wasn’t a cool kid who did cartwheels and flips…I could do a summersault, though, does that count as cool?) while eating peanut butter, but I think it worked. I think getting scared worked too. Oh, and the trick of trying to down too much water hoping your body would forget it needed to be doing the hiccups…I think maybe I just got wet and upset with that one.

Hiccups can be strange.

I think the same word can be use to describe talking to friends or family going through, dare I say a cancer diagnosis, cancer treatment, cancer infusion, cancer blood draw, cancer emergency room visit, cancer surgery, cancer dressing change, cancer maintenance drug, cancer history, cancer history in family, cancer _____ . Cancer. Cancer. Cancer. CANCER. CANCER.

Initially, I intended to provide examples of metaphorical hiccups and create analogies of how hiccups are just speed bumps in the road. Small things. Things not usually remembered or given much thought to because they are there then they are gone.

But I’m venturing into new territory here. Territory I didn’t plan to write about in the first place, but here I am following the voice in my brain. And shifting gears. So keep the hiccup part in your head, but also keep your mind open.

I picked up a book the other day for book club. And usually, I would’ve grabbed it off the shelf at a bookstore, read the back cover, discovered what or if there were other books by the author next to the book I picked up, googled the author, wondered if they had an Instagram, scrolled through. I don’t leave rocks unturned. I read consumer reports. About sunblock. About cars. About mowers (I don’t have a house, or a yard, or need for a mower, but it’s interesting and not too many pages past sunblock). But I did not this time. I just looked at the cute dog on the cover and the girl sitting on her VW van. Read the mystic subtitle and started to read.

A few pages in my sister yelled that dinner was ready. I joined her and talked for a moment about the book I had just picked up and how it seemed like it was about a mystery diagnosis that I thought would lead to a complicated autoimmune disorder diagnosis.

Nope.

The memoir details a journey of a beautiful, strong, and brave young woman’s life before and after a cancer diagnosis. And I would have known that if I had started my research by flipping over the book. I am glad I didn’t, though, I’m not sure I would have read it.

Back to the hiccups…my transitions are terrible this time….but it’s okay!

I don’t’ know what to say to someone with hiccups. Just like I can’t tell you the secret words to comfort me or others who are suffering, who have cancer. I’m not sometimes sure what I need (to hear). I’m stubborn. And I can sometimes keep the hard things to myself. I despise needing help because of my disability, because of my disease, because of my situation. I don’t know how to ask for it sometimes when I do. I’m a walking hiccup.

So what next…Can the strange hiccup feeling go away? I don’t know. But I think we can try.

We can try to be better.
We can try to listen to understand.
We can try to learn to understand.
We can try and stand on our heads against the wall and eat peanut butter until the hiccups go away.
We can try and find someone who has walked a similar path and is willing to share their perspective.
We can try to be there.

I will never ever find a person who says magic things every time. At the same time, there are many of you who may not know when you were magic for me, but you have been magic before. Multiple times. I have no doubt.

I found some of that in the book I picked up. Strangely, it was as if I was talking to her while I was reading the book. It was a special time and a special book.

You never, ever may know how you impact another person. Or how that connection could transcend into the lives of others, but those impacts are imprinted on all of us, those connections do transcend into our lives and those of others, and we can and do change the world. 

…

I’m doing okay. The transition from intense chemotherapy to less intense immunotherapy has surprised me. Like coming off a spiny ride, but still spinning. And while that was happening, I decided it was time to reconsider my pain management plan. That’s been unexpectedly harder than I imagined. And…and…there’s always something else if I wanted to keep going. And yet, I do my best to choose hope.

The book I read was Between Two Kingdoms by Suleika Jaroud. That is my book suggestion for you all. It will help you be better, understand better, listen better, learn to understand, be there, see a new perspective, and 

And some jams for you:

1. Love Yourself – Betty Who
2. Salt Then Sour Then Sweet – Sara Bareilles, Brandi Carlile
3. Everything is Peaceful Love – Bon Iver (Fun fact, I saw one of his concerts at the Hollywood Bowl; And also saw Spence from Criminal Minds there…I did…I swear)
4. Travelin Soldier – Cody Johnson (I know, I know...the (Dixie) Chicks version is original and incredible AND this one is so good too. Give it a chance!)

You are always welcome to continue to support me on my journey in any way you choose. Some ways you can help me are:

1. Provide me with book suggestions (think historical fiction and nonfiction)
2. Send me mail! (I just found out about this cool website where you can sign up to send and receive postcards (from) around the world, it’s called Postcrossing). 
3. Want to visit the Bay Area?
4. Donate to my GoFundMe to help me pay for my insurance, medications, procedures, parking, transportation, etc. (and THANK YOU to all who have and continue to help in this way)
5. Consider supporting a vendor dedicated to cancer awareness, like DogLove Original Brand

Last little thing before I go....do you believe in signs...I believe in signs...Anyhow, the song that inspired the name of my blog so long ago came on just as I was finishing this up. Magic, people, magic. 

Full Circle

When I was about six years old, and my parents asked me to decide on a color/theme for my room. I choose what most kids would choose: A neon green Christmas room!!!  

Maybe you guessed a pink unicorn room? And you weren’t far off, that was how the bedroom next door to mine was decorated. 

 

Fast forward and I’m now falling asleep in a pastel/muted neon green room. Nothing much to do with Christmas. Well, there are the boho twine star ornaments hanging on my linen ladder. In my defense, however, they go with the décor, so can you really say we’re back to where I started?

 

When I was young, I also spent hours gardening with my mom, sisters, and friends at that old house. And now, after many years I’m back to gardening. Not the same house, but I do live with my sister in the not so loud green “Christmas” room. 

 

Back then, next to gardening, I’d spend significant portions of time in and out of appointments and scans and tests and who knows what the hell else having to do with my health. And what do you know, I”m back at it. 

 

Do you remember, as a kid, when you would go somewhere and you’d fall asleep in the car and wake up the next morning still in the clothes from yesterday? Reminds me of the days when I was going through chemo when I would go to sleep in my clothes and on occasion not change until the next evening. I didn’t have the energy to change. Sometimes my energy was so depleted, I barely managed to eat and shower. 

 

I wish every day to be able to switch that part of to a house full of animals part. 

 

Can you imagine 9 puppies, 3-4 dogs, 3 cats, multiple kittens, mice, salamanders, rabbits, hamsters, the stranger’s dog who would swim down the river and came to our house for a visit all under one roof!?  Oh wait, I forgot to mention my family who took care of all those animals and the neighborhood kids who were in and out of our house too. And that’s probably not even half of the animals and people passing through the doors of my childhood home. 

 

I don’t have the statistics, and for the most part, I don’t want to know them. But I bet the Neuroblastoma and MPNST cancers have similar statistics. And similar facts. But those I can summarize for you. Hard to treat. Best to catch early. Whack-a-mole with what works for each person with regard to some pieces of the puzzle. The treatments themselves are risk factors for developing additional cancers down the road. Genetic markers can be determined, but to some extent we’re not able to determine yet how those affect treatment. Most drugs worth pursuing are still in the trial phase and while it is clear they are helpful, you might not have access to them. You should pursue this course of treatment, but there are no guarantees. Oh, you pursued that course of treatment that was not supposed to work, but it did. 

 

Another thing I know for certain that comes back full circle is that I don’t back down from a challenge and I always put up a fight. 

... 

 

I’ve been reminded recently of how great the medicine of laughter is for me amidst the ups and downs of this full circle journey. And my favorite thing to make me laugh right now is Amy Poehler’s Podcast: Good Hang. Not surprisingly, I laughed almost the entire time when Jack Black was the guest. And I love how there is this part of every episode where Amy asks about what makes her guest laugh. Some memorable ones: early years American Idol auditions where the person auditioning thought they were good and they were not and the Debbie Downer SNL skit with Lindsey Lohan. 

 

My message to you, while some things in life do come full circle. And some of those things can bring us down, I encourage you to chase down something that makes you laugh.

 

…

In the past few months, I’ve stopped chemo and started Immunotherapy. My most recent scans didn’t show significant improvement from the improvement we saw with chemo, but there wasn’t anything trending in the other direction. I’ve had no side effects with the immunotherapy, and I’ve been feeling good and getting stronger. I have scans coming up and we’ll see where I am at then. 

 

You are always welcome to continue to support me on my journey in any way you choose. Some ways you can help me are: 

• Book suggestions (think historical fiction and nonfiction)
• Send me mail! (I just found out about this cool website where you can sign up to send and receive postcards (from) around the world)
• Donate to my GoFundMe to help me pay for my insurance, medications, procedures, parking, transportation, etc. (and THANK YOU to all who have and continue to help in this way)
• Song Suggestions (“Devils in the Canyon” by The Strike is something I like right now)
• Know any good jokes? (Why did the Chicken cross the playground? A: To get to the other slide)
• Consider supporting a vendor dedicated to cancer awareness (Autumn Collection just released *hint*hint*)

 

Inside the Mind of a Chemotherapy Patient Part I

It’s been a while since my last post. Part of me didn’t know where to start. Another part has been reluctant to post because I lacked the courage to voice what I had written. But I finally decided (with a few healthy scoops of encouragement) that I’m better than self-doubt and my story is worth being told. So here we go… 

A few weeks ago, my sister and I were preparing to go shopping. I needed to go to Michaels and Target and to stop here and go there. Oh, and can we stop and get a coffee? At Philz, please? Please, please, please! 

But after putting on my shoes and before grabbing the essentials, I checked my temperature. (Checking my temperature is now a multiple times of the day practice for me since I started chemotherapy). And this time, my thermometer was telling me something might be wrong. It said 99.4, then 101.4. “Uh-oh,” I thought. 

“Morgan,” I shouted down the hallway. “Change of plans! Looks like we’re going to the Emergency Department at Stanford.”

When you’re a cancer patient, all the normal rules change. Suddenly you must remember different sets of guidelines for things that I took for granted before. Things that I am sure people take for granted each day. Things that I think we shouldbe able to take for granted. 

But let’s not should all over ourselves here…

If my temperature climbs above 98.8, I throw myself into high alert. And if it reaches 100.4, I earn myself a trip to the emergency department (ED).  

And since my rules changed, I’ve earned that ED ticket twice.  

Before this trip, I felt okay and had no additional “outside of baseline” symptoms. But, I grabbed my go bag, just in case, and Morgan and I headed down the freeway to the Stanford ED. I text my twin on the way to let her know just in case this wasn’t a “get out of jail free card” visit. Which is more of a dream rather than something I have experienced…but a girl can dream, right!?! 

By the time we got to the ED, there were no longer any signs of a fever and things were looking up for me after additional vitals and an EKG. But as results of the “just to make sure” tests began to roll in, my situation turned from, “okay, so since that was clear, can I go home now? I feel fine” to my doctors informing my family and I, that I had an infection in my blood caused by the bacteria E.coli, my large colon was inflamed, and my neutrophil count was in the toilet. And in addition to my ticket to the ED, I earned an additional ticket to a room at the hospital. 

A blood infection or septicemia can progress in three phases: sepsis or severe inflammatory response syndrome (SIRS), severe sepsis, and septic shock. It should be said that while these phases are widely recognized, there is new material surfacing about changes to this nomenclature. For more information on septicemia, refer to the following: Cleveland Clinic and Mayo Clinic. 

When I was first admitted through the ED, I landed in a single room with a full bathroom in a newer part of the new hospital. By the time my trip ended, I was in a double room in the old hospital that was not much bigger than the size of my bedroom. And the ½ bathroom was about the size of my (not walk in) closet. I was also sharing the room and bathroom with a woman who was in the hospital for a variety of reasons, including, most recently, recovery from surgery where she had an infected abscess removed from her buttock. An infection doctors were unsure as to if they had “got it all.”

If you can imagine how the accommodations seemed, imagine this also as a metaphor of the level of care I received, with a couple of exceptions. Good care to not so good care, and in some cases horrible care. Agitating to scary. Can I go home yet to let me out of this prison. 

Accommodations and care that led me to spending the last two days of my stay cycling through praying, breathing meditations, repeating mantras, imagining myself in times and spaces that I only dreamed about, and doing my best to occupy my mind and not let it wander to thinking about how lonely I felt and how scared and sick I was of being in the hospital. 

During one of my last two nights, I had a nurse who must’ve been part angel. She was incredible and seemed so out of place. So out of place that it lightly shocked me and helped remind me to be grateful and to keep pushing through with a better attitude. I remember we talked about how she used to work in pediatric oncology at the Children’s hospital. And what her experience was like as a mom when her kiddo was fighting cancer. I don’t recall many specifics I just remember she made me feel empowered and lifted me up and helped me get through that last stretch in the hospital. 

I find myself in healthcare settings frequently, and they always cause me some level of agitation. They provoke feelings of fear, stress, worry, anxiousness, etc. And it does not matter how kind or nice a facility is or the healthcare professionals working in them are, I still have these feelings.  I’m frequently convinced these feelings are bigger than all the tools I have to overcome them, but I do. My current track record: Maddy: 100, Hospitals: 0. 

Since that stay in the hospital, I’ve managed to have accommodations only at a la hotel Madison’s Room. And I’ve learned that my treatment has been successful in shrinking my mass. It’s been a ride and I’m still fighting the same monster and it is still hard. I still need help and I’m still learning to ask for it. 

In wrapping up, I’d like to say: I’m grateful for my community for continuing to help me get through this. You have no idea how important it Is for you to be in my life and support me the way you do. I appreciate each of you. 

Below are ways you can continue to help/support me in my journey: 

• Mail me something!
• Donate to my GoFundMe: https://gofund.me/d8dca4c1 which helps fund the cost of things such as medications, health insurance, copayments, etc.
• Send me a favorite SF place suggestions (I’ve switched coasts!)
• Give me a book recommendation (Nonfiction, memoir/biography, or historical fiction)! Not that I don’t have 10 books on my shelf that I still need to read…haha
• Spot me some words of encouragement, mantras, or affirmations
• Give me a Song/playlist/podcast suggestion (yes, I subscribe to Spotify!)
• Give me a movie/show suggestion
• Know any jokes?
• Consider raising awareness by supporting a local business and buying cancer awareness swag: https://www.etsy.com/shop/DogLoveOriginalBrand
• Send along a (simple) food recipe
• Any chance you want to visit the SF area?

I’m also going to flip the tables and drop a few song suggestions for all of you: 

• All I Know So Far – P!nk
• Waking up Dreaming – Shania Twain
• Praying for Me by – Ben Rector and Mat Kearney
• Go – Cody Fry
• Backseat Driver – Kane Brown
• Be Yourself – Wilder Woods
• Better Days – Dermot Kennedy
• Only Going Up from Here – WILD
• Watch Me Go – Mat Kearney
• A Bar Song (Tipsy) – Shaboozey…I know, I know…but it’s fun!

 

 

So you never know who you touch. You never know how or when you'll have an impact, or how important your example can be to someone else ― Denzel Washington, A Hand to Guide Me
 
People will forget what you said, people will forget what you did, but people will never forget how you made them feel. – Maya Angelou

The Best Worst Stay

“Excuse me…Excuse me…Hello?” She called dispiritedly from behind the curtain. 

Rachel had lost her grip on the nurse call button and had been in distress for goodness knows how long before she was able to get my attention.  I’m not even sure how I heard her that mourning through the incessant beeping, alarms, and my earplugs, but I did. 

 

I pulled off my eye mask and hastily removed my earplugs as I moved myself around to find the nurse call button in my own bed and get Rachel the help she needed. 

 

“I hear you, Rachel, hang in there I’m getting ahold of the nurse for you.”

 

Before I could finish, Rachel interjected to apologize and explain the need for my 4am wake-up call, she put the fault of the situation on herself and attempted to offer solace to me for disturbing my peace.

 

The truth was, Rachel, was let down by her healthcare team. Her body did not enable her to push a call button unless the nurses or medical aids ensured they had placed the modified call button in the palm of her hand, but they forgot to do that before they left her side the last time. 

 

Five days before the wake-up call, I had surgery to remove the MPNST mass, the surrounding, possibly, affected tissue (called the margin, I believe), and have a nerve removed from my calf and re-graphed to a part of my sciatic nerve in my upper right thigh that had been severed as part of the removal of the affected tissue/margin.  

 

My post-surgery stay at the Brigham and Women’s Inn, I mean hospital (BWH), consisted of a (bed)room that maybe reached the standard square footage (132 square feet) and a bathroom that just barely fit a toilet and stand-up shower. The sink took up residence in the (bed)room. 

 

My roommate and I split our facilities and utilized fancy, nearly sheer curtains that resembled something out of That 70s Show for privacy. 

 

You can imagine that my roommates and I grew to know each other more intimately in certain ways than some folks in my life who I’ve known for decades ever would. It is no lie that I could recite a short medical history for each of them and them for me. So being comfortable with this aspect of the stay was critically important to recovery and it was something I quickly learned to accept so I could move forward with my own healing. 

 

I am grateful I did because it allowed me to establish the unique relationships, I had with my two different roommates. Two unique relationships that I have found great value in as I reflect back on my time at the BWH. 

 

Pammie was my first roommate.  She had a gastrointestinal (GI) procedure. That was fun. You should have heard her farts.  If anyone needed a recording for their productions, Pam was your girl! She and her husband were some of my company each day, and they also liked to gossip and speak their minds. Fortunately, their gossip was harmless and, surprisingly, very entertaining.  Especially when my visitors and I were the target of their shenanigans!  Did I mention these old timers were also hard of hearing? My guess is they did not even realize we could hear them. What a hoot!

 

Rachel was my second roommate.  It is funny how I too was a patient in the hospital with her, also recovering from a significant surgery, but I became one of her caretakers.  I’m still waiting on my paycheck. 

 

Rachel was a gem.  Her situation was challenging.  Multiple sclerosis and a stroke had significantly impacted her mobility and then she was in the hospital for a terrible bladder infection that resulted in surgery. 

 

When Rachel arrived it was clear the healthcare team needed more room, so, with my consent, my nurse moved my bed 2 feet or so closer to the door to give Rachel more space.

 

Within maybe 24 hours after Rachel’s arrival, I was ready for discharge!

 

By discharge it was more like getting the boot! Rachel’s situation escalated and the needs her care team had to attend to negatively affected the care my care team could provide to me.  While my caregiver, Charles, and I were working on the discharge process, Rachel’s care team insisted that Charles be removed from the room because he identified as male. And while the (bed)room should have had enough space and strategic curtains to keep this from happening, that was not the case for this situation.  By now, my space was barely confined to my bed, and we were nearly in the hallway. 

 

Luckily, the situation deescalated quick enough and I insisted that Charles be allowed back in to help ensure my discharge process went smoothly and we both understood my instructions post hospital stay.

 

At last, I was finally free to begin the next part of my recovery process at home. 

 

Did you catch the “best” worst stay in the title of my post? 

 

Well, the best part was because I could not have asked for better nurses, doctors, physical therapists, medical assistants, physician’s assistants, etc. 

 

The BWH and Dana Farber (DF) healthcare providers are remarkable! The challenges they face and the mountains they move EVERY shift to overcome resource shortcomings for their patients is extraordinary. 

 

Imagine the bathroom I told you about…Size of a closet…no sink…

 

I could get to the bathroom in my (bed)room with some help.  I needed help because I had an IV most of the time I was there. Fortunately, I didn’t need assistance to get on the potty, but if I did my caregiver would need to maneuver themselves, me, and my IV in a space in front of the toilet of this bathroom that was no bigger than a 4x4x4 box.  Did I mention the bathroom also had weird angles? So, it wasn’t a square or rectangle it was an boomerang shape. Now how in the world do you picture a caregiver making this work? I sure can’t, but THEY DO. And these caregivers exude levels of passion, dedication, patience, and care like I have never seen. They truly have learned how to scale the mountain of doing great things with limited resources. 

 

And it is for that reason that I am at peace with my stay and am grateful for the care I received.

 

I wish that BWH and I could part ways for good, but it will soon be my home again. Round I of the resection did not produce the results we had hoped. There were a few cancer cells left behind on a margin they saw after removing the tumor and examining it more closely, so we’ll be going back in to remove more tissue on December 12. 

 

I see this as another step forward in my war against cancer.  I am not done, and I still have a hell of a fight left in me!

 

Stay tuned for more.  I am warming my fingers back up and trying to get back into things.  As always, if you want to know how to support me in my journey, below are some ways you can do that.  And please let me know if and how I can support you.  I am here!

• Donate to my GoFundMe: https://gofund.me/d8dca4c1
• Mail me something! 
• Give me a Song/playlist/podcast suggestion(s) (yes, I subscribe to Spotify!)
• Give me a movie/show suggestion(s)
• Know any jokes?
• Consider raising awareness by supporting a local business and buying cancer awareness swag: https://www.etsy.com/shop/DogLoveOriginalBrand 

Grateful for each of you!

And Rest...

In music there is a symbol for rest that looks like a hat. It was one of my favorite symbols to see on a piece of music because it meant I had a break.  A pause, a shift from active to inactive, a stop, etc. 

My band teachers taught me about how good musicians used this time in music to rest, to feel at ease, to be ready for the next step. In fact, there were techniques that professional musicians mastered to calmly play music and not feel like I felt. 

 

And I felt like the rest was always a time to play catch up.  Catch up on my breath. Catch up if I had skipped a few notes.  Catch up on where we were in the piece.  

 

I like playing clarinet and I tried my best.  For the most part, I was considered pretty good, but I was not always first seat in the first string of the bands I played in. And I never came close to being a good musician.  But what mattered is that I liked doing it, so I kept doing it. 

 

During my time between the end of radiation therapy and my surgery, I hopefully approached the rest symbol in my piece. I expected a pause, a shift from (more) active to (less) active, a stop, etc. 

 

What I played into was less of a decrescendo and more of a crescendo. And when I thought the cues were building to rest, I was suddenly surprised with an accent, perhaps even a marcato. 

 

During radiation therapy, I would spend three days a week traveling 20 minutes north to work, leave work and travel 20 minutes east to the outpatient radiation clinic, then another 25 minutes back home. The two days a week I would work remotely simply cut out the commute from work. 

 

Once radiation therapy ended, there were less commutes because I didn’t have to receive radiation therapy each weekday.  However, my time quickly filled up with other appointments, scans, tests, and discussions with my insurance provider about how they were processing my claims from radiation therapy incorrectly. 

 

On top of that, my doctors were not honoring our plan for my treatment in terms of scheduling surgery and maintaining a timeline.  SO, I was often connecting with their offices to figure out what was going on. 

 

When I think of rest I imagine stress flying out the window.  But just like my teenage music career, my post radiation therapy rests did not entail stress flying out the window. 

 

My saving graces were my family and friends.  The diners and laughs.  Football and food. FaceTime pie making tutorials with friends over Zoom. Smiles, flowers, packages, cards and limitless outpouring of “you’ve got this Maddy” and “we’re with you every step of the way.”

 

I’m working up to writing posts that are more like those I’ve written in the past.  And to a certain extent, because I struggled to write how I wanted to write, I stopped writing. I realized, however, that I really miss writing and it shouldn’t be about the perfect post. So here’s to me taking a rest from beating myself up about writing and turning a new page in my journey.  More to come soon! 

 

P.S. Don’t Be So Hard On Yourself

Day #3

By now, I had radiation therapy down to a routine.  Check in, grab parking validation, walk down the hallway to the locker room, change, wait, and then join my team in the radiation room.  

On day 3, I noticed they weren’t playing any music. And as soon as I noticed, the music started.  

This was no coincidence, my friends.  Nope.  Nuh-uh. Not at all. 

Today was day 3. My favorite number. That I noticed. 

Today, I’d discussed how number 25 (the total number of treatments I was to undergo) was a lucky number. Something else I noticed.

Today I noticed the new sign of encouragement at the receptionist’s desk. 

Today, I noticed that I missed the music.  

And when the music did begin to play, it was my favorite song: Hotel California by the Eagles.  

What is more, the song began as soon as the treatment started, and the technicians left the room, and ended exactly when they returned. 

So, I took all the good energy, prayers, signs from God, and more and soaked it all in.  

And, just like I repeat to myself as the Elekta radiation therapy machine shoots killer radiation beams into my body, I will say the following to any bad energy or bad vibes or cancer cells: 

Die motherfluffers, die! Kill, kill, kill! Burn in h$ll. Don’t come back.  You are not welcome here and I don’t want you.  Stay away from me.  Get out.  I do not accept you! Die, die, die. 

You all may be just as shocked, now, reading those words as I was when these thoughts rolled into my head on my first day of radiation.  It was like a storm cloud rolling in to declare that it was going to send the thunder, the rain, and the lightning down with fury.  And there was nothing getting in its way.  (Cue the Imagine Dragons Thunder Song). 

That fury started burning inside me from day #1 and now when I have radiation therapy, my chorus and I send down the same tenacious lyrics to all the cancer cells: die, die, die…  

This girl does not Sit Still and Look Pretty (thank you, Daya!).  She picks up a sword, wrangles a horse, and gallops into the fight! 

So cheers to the mighty force keeping me going, I am beyond grateful and I know you give me the strength I need for the fight. 

...

Before I go, I know many of you ask me how you can help.  I do have some ideas.  

• Be my pen pal! If you don’t have my address, let me know. 
• If you have the means, you can help support me financially: https://gofund.me/d8dca4c1 (those who have donated have helped me pay for co-pays, gas, medical supplies, prescriptions, food while traveling, etc. and in the future these funds will help pay for lodging for myself and my family while we are staying near my treatment facility post-surgery)

• I have a playlist that I listen to on my way to radiation therapy, please send me song suggestions
• Words of encouragement, jokes, photos of your babies and furbabies…all bring me joy, put a smile on my face and can make me laugh! Please share with me!
• If you live close buy, and want to grab a meal, I’m all about that!
• Socks! So I got some socks in a care package.  They are outrageous socks.  But I came up with the idea to try and wear a new pair to every treatment.  I forgot a pair of socks one time so now I am down to only 2 new pairs to wear.  So send me some crazy, outrageous socks! I’ll wear them to therapy! Haha.  My team of radiation therapy technicians and I now look forward to them and we laugh together!
• My favorite etsy shop (DogLoveOriginalBrand), run by a family member, has a cancer awareness line.  She also contributes to fighting cancer.  Please check her out and consider supporting her shop!

My First Tattoo

The tool he held up looked like it came straight from the movie Tron. To some extent it was reassuring and I mistakenly believed that because it looked so advanced, maybe that meant it wouldn’t be painful. 

I joked with my tattoo artist and asked if he ever thought he’d have to learn the art of giving tattoos in the medical field. He laughed and began to talk me through the process. 

My first tattoo took only a few seconds and the three proceeding ones only a few seconds more. After less than 4 minutes I went from having 0 tattoos to having 4: 3 black dots on the back of my right leg and 1 on king covering my right gluteus maximus muscle. 

My new tattoos are for medical purposes. On August 28 I’ll start radiation therapy to hopefully shrink the cancerous mass in my leg. 

To ask exactly when I was diagnosed is hard to say. In the coming days and weeks, I’ll share my journey with you. 

The cancer in my leg is called malignant peripheral nerve sheath tumor, a type of sarcoma. (Check it out here, if you dare!). 

I can imagine that digesting this much information could make one’s thoughts become a bit foggy. Me too! Life events, big and small, have this effect.

There are many things we can choose to do and focus on when things come our way. For me, I’m trying to give this fight all I’ve got. To try and accept help. To own when I’m afraid. To joke about things to make the situation less uncomfortable (not everyone will laugh and that’s okay!). To cry when I feel like crying and not apologize for the tears and vulnerability. To reflect and be self aware so I can admit when I’m wrong and own that too. To do the things that are uncomfortable with my head high because I know I’m brave. 

And, friends, you are too! 

Standing beside each other takes courage. Life is not predicable. We don’t get a guidebook for our own personal development. But we do have each other and you are not alone and you and your story matter! 

I’ve spent so many hours trying to think of ways to help others over the years and also doing things I assume are helpful. What feels really good to me is when someone asks for something they need help with and I can fulfill that. So I have some things I think you can help with, if you’d like. 

• I love to write and receive things in the mail. Be it care packages or letters. It always makes my day! So, if this is something you’d like to do, let’s connect.
• I need some fight songs! Let’s hear your best song suggestions to kick some ass and I’ll add them to my Spotify playlist. 
• Do you have a relatively easy and healthy recipe you love? Let me know! I love to consider new ideas when meal planning. 
• Any New England day trip ideas? 
• What about a kick ass place to eat between CT and Boston? 
• Better yet, what do you know about the New England coffee scene?
• Dog photos? 
• Kiddo photos?
• Nonfiction book recommendations? 
• Words of affirmation and encouragement?
• Who wants to come for a visit? I’m serious. 
• If you have the means, a go fund me for transportation, lodging, parking, copayments, treatment, etc. is out there

When I had cancer as an infant, my mom never gave up. She always found a way to have the strength to keep going for me. I know I can keep going because she showed me how. And I know that when the going gets tough, I won’t be alone. Thank you for not letting me fight alone.

Don't Quit

 “Y-, as in yak, a-, t-, as in Thomas, e-, as in Edward, s-, as in snake, Yates.” He replied, “and your first name?” “Madison, M-, as in Mary, a-, d-, as in dog, i-s-o-n, Madison Yates.” “It doesn’t look like the insurance has authorized your prescription, have you talked to your doctor?,” he questioned. 

I wanted to scream.  Most of the time I want to scream. Yes, I’ve called them.  Multiple times.  Yes, I’ve done my due diligence.  Yes, I’ve gone above and beyond to ensure that everyone has done their job.  And, yes, my doctor’s office has done everything they can do too. 

 

But instead, I calmly reply, “I have, yes, but I’ll follow up with them.  Thank you for your time.”

 

It was the beginning of week 6. 

 

Week 6 of phone calls, pleas, arguments, and countless hours of frustration over fulfilling one order for one prescription that I have taken for years. 

 

Today we are asked to have a full-time job, to take care of the house, to ensure our family is taken care of, to take care of ourselves, and now to manage the fights against our insurance companies. 

 

Admittedly I don’t have the time and energy to do half of those things. But I give it. Sometimes I want to give up, but most of the time, I am reminded that angels exist and that I am not alone. 

 

A few years ago, my little sister gave me a book about angels. I keep it at work because that is where I spend so much of my time. 

 

My mom, Rhonda, used to tell me stories about how when I was a baby and sick and, in the hospital, lying in my crib, I would converse with the angels.  She’d tell me that I was so talkative and aware of a sort of invisible presence all around my crib.  She’d sit and watch me just talking away, she said. So, I believe. And that is a reason I keep going and keep giving.  

 

When I finally thought about giving in and giving up and living without the prescription, an angel appeared.  I made one final call to my doctor’s office and explained in a voicemail that I wasn’t sure what to do and I was sure they had turned everything in, but my medication was almost out, and the pharmacy insisted that they couldn’t fill it. By the end of the day she had set things in motion and my angel, my doctor’s medical assistant, left me a voice message stating that she’d given my insurance an “earful” and insisted they comply with the order, explanation, and authorization that had been sent over 2 weeks ago. 

 

I picked my prescription up the next day. 

 

It had taken nearly 6 weeks, countless phone calls, hours and hours on the phone, 7-10 people, and goodness knows what else to ensure a routine medication was authorized by my insurance. 

 

This is why, I refuse to be a patient patient. 

 

“Well behaved women seldom make history” – Laurel Thatcher Ulrich

 

While I do not pride myself on being mis-behaved, I have learned that testing the waters and poking the bears can have its place. 

 

I was sent the following song recommendation one time and sometimes I channel it when I’m on hold waiting to be helped: “Sit Still, Look Pretty” by Daya. 

 

I sure ain’t here to sit still, look pretty and I am sure that there are many of you who are not here to do that either! 

 

I think I’ve also mentioned that one of my favorite movies is A Knights Tale. If you have not seen it and you need some motivation and encouragement, I recommend it! 

 

I’m learning to face the fact that part of my life includes battling the healthcare industry. And while I am still figuring out how to focus my feelings about it and use it in an effective and positive way, I believe in myself and also in you! 

 

Even if your battle right now is not with health insurance, just remember to…

 

Not give up.  

 

Don’t Quit

 

When things go wrong as they sometimes will, 
When the road you’re trudging seems all up hill, 

When the funds are low and the debts are high

And you want to smile, but you have to sigh,

When care is pressing you down a bit,

Rest, if you must, but don’t you quit, 

Life is queer with its twists and turns, 

As everyone of us sometimes learns, 

And many a failure turns about

When he might have won had he stuck it out:

Don’t give up through the pace seems slow – 

You may succeed with another blow, 

Success is failure turned inside out –

The silver tint of the clouds of doubt, 

And you never can tell how close you are, 

It may be near when it seems so far:

So stick to the fight when you’re hardest hit –

It’s when things seem worst that you must not quit. 

 

My grandmother sent this to me on a beautiful little piece of stationary. I am not sure who wrote it or where she got it, but I’ve kept it with me for many, many years.