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

September 2023 Sarcoma Journey Update

I have 6 more radiation treatments left, 19/25 down. While I am looking forward to not fashionably sporting a black and white oversized hospital gown and gracefully maneuvering myself onto a metal slate while allowing tiny radiation beams to “pew-pew-pew” (sound effects provided by MM…you know who you are!) the mass strangling my sciatic nerve…I am going to miss the incredible radiation therapy team at UCONN.  When I walk in day after day for my treatment and see them, it feels like family taking care of me.  I’ve found a place where I don’t have to wonder if I will be taken care of by some of the best practitioners, I know and I don’t have to worry or feel anxious.  

I felt like this was what I needed during this part of my journey, and I am glad I trusted myself. I know this is one of the many reasons why I am doing so well. And while I can’t tell you what test results say (haven’t gotten there yet), I can tell you that I feel strong, have good energy, and my skin (where the radiation beams get shot at) seems to be doing remarkably well. Shoot, cancer can’t bring me down.  Ha!

Another reason I am doing so well is because of all of you. Many of you are there every day cheering me on in more ways than one and some, like boyfriend, we’ll call him Goose, is here in the weeds navigating the everyday with me too.  I can and try to show my gratitude for what he and you all have done and are doing, but I know the true reflection is putting up one hell of a fight. So thank you for continuing to help me do that! 

So what’s next?

Radiation therapy is done after October 2. There will be tests and appointments after that then eventually after a few weeks or so I’ll have surgery.  Then more tests. 

One definitive about cancer is there is uncertainty. I know it seems like an oxymoron, but we all face this every day and I believe one purpose in life is to find peace in the uncertainty.  One of you sent me a song for my radiation therapy playlist called I Can Handle It by Steven Furtick…

By the way I have added all your songs that each of you have sent to that playlist and listen to them on my way to and from radiation therapy

…and the song reminds me of what I can be certain of in my life.  And if I focus on those things, I crush all the sh*t that tries to bring me down and I can confidently rock my f*ck cancer socks with pride.

I wear the socks you all got me to radiation therapy too. My radiation team loves them! I don’t know which one of you sent the Wonder Woman socks, but they might be my favorite. 

I’ve thought a great deal about my blog and have wanted to prepare a post for so long, but I haven’t found that post yet.  Instead of continuing to leave you all in the dark, I decided to bring a brief interlude (this update) so everyone knows things are going well. 

I hope my next post isn’t too far behind, but until then, here are some ways you can help support me (or others going through something too): 

• Send something in the mail (outrageous socks, perhaps)!
• Send a fight song or other song recommendations 
• Do you have an easy and (relatively) healthy recipe you like? Send it along!
• Recommendations for New England day trips
• Recommendations for awesome food places in CT or the Boston area
• Send some fun photos of you and your kids and pets
• Do you have any nonfiction book recommendations
• Would you like to visit the area and stop to see me? 
• Send some words of affirmation and encouragement
• Support my favorite Etsy shop:  https://www.etsy.com/shop/DogLoveOriginalBrand.  The owner has an awareness line that includes items for cancer, mental health, and autism awareness.  
• Monetary support via the go fund me my sisters and Goose set up: https://gofund.me/d8dca4c1. 

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.