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

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!

Diagnosed: Sarcoma

 The following is an account of the events that led up to my diagnosis. I wrote it as I was awaiting the results of my pathology report. It is a bit long… 

My mind had been made up.  My decision was final.  I want the surgery and I want it yesterday.  I told my doctors.  

 

I waited for the surgical scheduling assistant to call me. 

 

I waited for the Physician’s assistant to call me. 

 

No one called. 

 

A couple of days past.  Then more.  Then a week had gone by.  

 

I checked my healthcare app.  It seemed to know more than myself or anyone else did because according to the information in my chart (funny enough the application is called MyChart), I was scheduled for surgery in less than a month and had a couple of follow-ups, a blood test, and a COVID test in the coming weeks.  But no call.  No information from my doctor’s office. 

 

Wait a minute, I thought, did an AI BOT take over my life and program everything for me? Like, what is going on?

 

Initiate phase II….

 

I called.  I called. I called. 

 

I left messages.  

 

Then I left for vacation, and I decided I was going to let it go for a couple of days then re-group and If I did not hear from anyone then I would go to the office and not leave until someone told me what heck was going on. 

 

On my last day of vacation, I visited a spa.  I left most everything in a locker, including my phone which I put on silent and do not disturb. 

 

And you guessed it. BAM. Missed calls, voice messages, and multiple updates.  

 

I laughed and cried. 

 

Surgery was scheduled. 

 

Tell the people. Make the plans.  Do the tests.  Visit the PCP for surgery clearance. Go. Go. Go. 

…

 

I woke up to the sound of the nurse’s voice letting me know she was removing the catheter and emptying my bladder, “this might be a little uncomfortable for a moment, but the surgery is over.”

 

As they wheeled me to recovery, I had a thought.  Well, if I had a catheter in, that means the surgery took longer and it wasn’t just a biopsy.  Right?

 

My surgery call time was 5:45am. 

 

Gail, the nicest, kindest, sweetest woman showed us where we’d be staying that day and gave us a small tour of the first floor of the hospital.  She stayed with us for a moment to encourage us that we were in good hands, and she wished us only the best. I’m pretty sure she was an angel!

 

Five years after we arrived someone who had authority over getting the ball rolling came to see us. I lasted 2 more authority figures after that before I got overwhelmed and needed both my boyfriend and my sister to talk me off of my metaphorical ledges every 2 minutes. 

 

What if my potassium was high and they couldn’t do the surgery? 

 

What do you mean the plans have changed and if it’s malignant we’re doing a full U-turn? 

 

At the last minute I decided I needed to pee. 

 

When you pee before surgery it is the only time that you can (1) be alone and (2) have complete control over yourself.  So, if anyone would like to know why I go pee so much before surgery, you know now. 

 

As they wheeled me around the tight corners, they explained that I was late because I had to pee.  But, really, I was late because perhaps that was the last opportunity I would have to experience freedom of the unknown.  

 

When I was younger, I always wanted to know everything.  I devoured books, learned how to research effectively, and never hesitated to ask questions.  I sat in the front of the class and paid no mind to people who called me a nerd.  If there was a question, I tried to answer it. 

 

While I still enjoy learning and gathering information.  I’m now inclined to find myself more at peace with not knowing.  Because knowing might mean I have to confront mortality. I’ve lived with this fear since I could understand how miraculous it was that I kicked cancer’s ass the first time and that my treatment opened copious doors to new cancer opportunities.  I was 12. 

 

When they asked who I would like to come and see me in recovery, I said to send my sister.  I wanted to say, my boyfriend, but I needed her because she was medically trained and I felt she could help me get in the know the quickest. 

 

I remember her looking at the nurse (the nurse who had seen hundreds of moose during his time in Alaska…yes I grilled him about this) and asking if she could tell me. 

 

Initial pathology was benign, the hovering cloud was gone.  

…

 

Then the ping-pong games began. 

 

I got a call from the doctor about a week or so after the surgery about the final pathology.  They needed to do more tests.  The results would take more time than initially thought. (Ping)

 

I could tell that wasn’t exactly the plan we all thought would be ahead of us.  

 

Really benign had turned to, we’re looking to make sure it’s not cancer, but we didn’t know anything yet and we needed to wait on the test results. I mean this still looks benign, but there’s just something. 

 

At that point I wasn’t shaken.  Every time I’d had something removed, they were reasonably cautious given my history and always went with the more tests just to be sure option. 

 

Then came my post operation visit with my surgeon and he put Malignant Nerve Sheath Tumor on the table. (Pong)

 

Wait, what? 

 

Was this just more information than the doctor on my team had shared with me on Friday, or was there new information? 

 

The appointment ended with still waiting on the results, but all I heard was cancer.  They thought perhaps by Thursday afternoon we’d know more since they had tumor board then. 

 

Since my surgeon was a surgeon, he said my other doctor would know more and I could get an appointment with him. But my surgeon’s assistant didn’t have the number for my other doctor’s assistant, so my boyfriend and I walked downstairs ourselves. 

 

The assistant informed us that my doctor was away from the office and there was no one there to help guide her with how urgent the request was and what to do. She’d give me call back. 

 

On the car ride home, I got my answer.  “Nothing had changed, and we needed to wait until Thursday.  He said he’d call you then”, she reported. (Ping)

 

By Thursday the only information was it didn’t look benign anymore, but they still weren’t sure.  He said the pathologist would report without the additional data they needed to confirm anything, and it would likely say cancer.  He said, however, that they honestly weren’t sure and that only the tests could say.  (Pong)

 

A few weeks later, the results weren’t good. Cancer. And less than a month after that, it was confirmed. Malignant peripheral nerve sheth tumor, a type of sarcoma. 

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.  

 

The Expert Patient

Round and round I climbed the parking garage in San Francisco.  I can’t remember if I felt relieved or frustrated. Maybe a little of both.  Relieved that my car and I were still intact after the drive into the city or frustrated that I couldn’t figure out this parking thing.  Either way I had nearly made it to a doctor’s appointment without my Mom for like the first time.  I can do it I told her.  I’ve got this.  I need to learn how to remember, recite, and answer questions about my 20+, single spaced, 10-point font, narrow-margined medical history book.

 

One of the GREAT benefits of moving from Indiana to the bay area when I was in high school was being near one of the best oncology doctors who treated and had been treating the type of childhood cancer I had been in remission for since 1990. Stage IV Neuroblastoma. Her name is Dr. Matthay. She was one of my heros and now she was one of my doctors.  How the heck did I do that?!?

 

I am certain my mom still had to fill in half of the details of questions I could not answer that day. And I am not 100% sure if this day was a day I saw Dr. Matthay or another doctor at UCSF Children’s Hospital, but I am making a different point, so bear with me. 

 

I draw your attention to UCSF Children’s Hospital because of how the team of health care providers created such a caring environment for me and my family during my time with them. From small details like how the offices looked and felt to big details about how I felt when a medical staff member was putting a pointy foreign object into my arm. 

 

Do you feel like places are less intrusive and more calming when the walls and rooms have fewer sharp edges? I do.  Or what about when the paint isn’t sterile white (or black)? How about fun seating areas that seem less stressful and more playful? 

 

Do you also notice that medical care providers, the good ones at least (and all of them seemed to be at UCSF) try and work with you at your level even if your level isn’t quite above their knee? 

 

It’s strange to me how much that can be tossed out the window when we reach a certain age or graduate out of a certain type of doctor.  Like when I finally started to see “grown up doctors.” (Or skipped a few years because the US denied me healthcare due to pre-existing conditions). 

 

Let me tell you, every day I wish I was still a young person not yet graduating to “grown-up doctors.”

 

I remember trying to find an adult equivalent of the pediatrician.  It took me a VERY long time to realize that “grown-up” doctors are “internal medicine” doctors.  Huh? How am I supposed to know that? I kept trying to just look for a doctor that specialized in nothing when first trying to find a Primary Care Physician.  And then there’s the Primary Care Physician terminology. What now? Whatever happened to just seeing the doctor?

 

Anyhow.  I’m back.  Trying to blog.  And since I consider myself an expert in being a patient.  But not being patient.  Or having patience with healthcare.  And having some wicked interesting stories in this area, I thought you all might be interested in taking a ride down that road with me.