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!

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.