8.26.2015

The Elephant Movement

I have the honor, or privilege, or complete blessing to benefit from a local group that wanted to reach out and support a local colon cancer survivor in memory of a friend. I won't go into details on how we got connected, but it was just what the doctor ordered for someone who's been whittling down thousands of dollars in medical bills each year - $100 at a time.

On September 11th, The Elephant Movement is holding a golf tournament in memory of a guy named Todd Eccles. Like myself, Todd was young, healthy, and in the prime of life when a diagnosis of colon cancer was handed to him.

Todd
Here's Todd's story, as told by his friend Jodi

"Todd was blindsided by stage IV colon cancer at age 43. He had symptoms, but brushed them off. I recall him calling me and telling me he couldn't ski like he use to, and was always tired. He didn't have insurance at the time, so didn't go to the doctor, which was obviously a big mistake.

Todd was a great skier, athlete, tri-athlete, and was always at the gym. He was in great physical shape. He was a fun loving, free spirit who tackled life on his own terms. He loved the water, and spent many summers on Lake Minnetonka. He wasn't married, but had many, many friends. He was the life of the party and always made people laugh. He had an infectious laugh and never took anything life had to offer too seriously.

Todd and I were friends for many years. He introduced me to a lot of his friends, who are now my friends. He was the common thread between many friendships. He went to St. Cloud State, and worked in the IT field for several years before moving to Denver and becoming a business owner with his sister. I had the idea for The Elephant Movement months before his illness, but it took shape when we had to get organized to plan his benefit. Todd helped shape the direction by telling me about his experience and what he needed. We talked daily when he was able. 

When he called me to ask me to come to Denver for the end, I told him I was going to keep his name alive by having an annual golf tournament in his honor - one that would help another person who shared his journey with cancer. He was flattered and honored. He touched many lives, and was a very kind man. I hope he is always remembered."

Here is what The Elephant Movement is all about:
What is The Elephant Movement? When an elephant is down, sick, or hurt, the other elephants won't walk away until the hurt elephant gets back up. The Elephant Movement was created to encourage people to do the same. When someone you know is sick or hurt, we encourage you to become a champion of them. Most people who are sick need help, but don't know how to ask for it, or they don't want to impose on others. Our goal is to find people who will volunteer to take the lead and gather the names of the sick person's friends and give them assignments. We all have unique gifts and it is important to assign things that match those gifts. It may be giving the person a ride to the doctor, preparing a meal, house cleaning, laundry, child care, or simply visiting them. No one wants to ask for these things, but when someone is sick or down, these things are needed. Be a champion for them. Be an elephant. And whatever you do, don't walk away.
Todd
I never talk about medical bills here. And I would never solicit money on my own behalf. I find it awkward, and liken it to throwing my own baby shower and telling people to bring me gifts. But the truth is, it's a reality for me and most people dealing with a chronic medical condition. Maxing out your deductible in a single medical visit is the norm.

From the beginning of my diagnosis, I've never been able to dig myself out. I've gone from holding a private policy with a high premium and high deductible, to a group policy with a high deductible, to another group policy with a high deductible. And medical establishments are kind enough to offer payment plans and never charge interest, but having a high deductible that gets maxed out within the first 2 weeks of every new year is about as thrilling as staying up to watch the ball drop.

I liken it to trying to dig a hole in the sand while the sides continually trickle back in. It's a never ending cycle that I have yet to get a break from. For me this is a chance to pay down medical bills, and an unsolicited opportunity to finally feel a little relief from the constant flow of dreaded envelopes in the mail. A portion of my many loads will be lifted, and for that I'm beyond grateful to The Elephant Movement for the opportunity they have offered to me.

If you are in town and love golf, I invite you to sign up. Kyle and his crew of merry men will be playing, and as the beneficiary, I'll be in attendance. 

8.24.2015

From London to the ER Part II

This part of the story includes me utilizing those glorious diapers one too many times, and everyone in the room being none the wiser.

I walked into the ER less than 30 minutes after deplaning, and the place was empty. Not that I didn't think my cancer card would trump most people waiting, but I didn't have to play it, so it didn't matter. Unless I'm feeling like total crap, I keep that baby in my back pocket.

They sat me down and took my vitals. They only thing I heard was that my heart rate was 150, and they were going to put me in room 32. The one place I had been dreaming about over for almost 36 hours was finally surrounding me, and a bed and some fluids were minutes away. After 12 hours of very ill traveling, it sounded like heaven to me. Especially if I was directly across the hall from the bathroom.

After explaining to everyone that I had literally gotten back from London in the last hour, my situation seemed under control. It's not like I was returning from a third world country, but perhaps they were just amazed I made it back in one piece. I was hooked up to fluids, provided one of those special bloody samples for the nurse, and eventually had enough fluids in me to reinflate my veins for blood cultures. Oh, and I let an extremely attractive ER doctor check out my backside.

That very attractive doctor took a look at my ass to make sure the bleeding wasn't coming from hemorrhoids. Apparently me saying, "Yeah, it's not. I can assure you!" didn't work and over to the left I rolled. I missed this part, but according to Kyle he said my back end apparently looked perfectly normal. Only I would take that as a compliment given everything the poor thing has been through.

Parenting with Cancer 101.
I eventually settled off into sleep, and was taken to my room around midnight. Because of my accelerated heart rate, they put me on the cardiac floor so I could be monitored around the clock. I was still violently shivering from the fever as I sat on the edge of the bed and the nurse stuck heart rate monitors all over my naked self. She dressed me, covered me with a warm blanket and told me that was all my little malnourished shivery self was going to get. Apparently anything more than a warm blanket is bad for a fever, but laying in bed shivering violently for hours is fine.

All those heart rate monitors would prove useful a couple of hours later when my heart rate took off and the nurses started pouring in. It was over 150 again, my blood pressure was dropping rabidly, and my fever was rising despite the Tylenol I was given when I got to my room. I vaguely remember looking over at the gaggle of nurses, hearing the word sepsis and starting to really get concerned for the first time all day. I knew sepsis was serious, and finally admitted to myself that I might actually be very sick. The concern turned to fear when a nurse came over to my shivering self and told me I wasn't going to like it, but they needed surround me in ice packs to get my temperature down.

Because my vitals had been so erratic, I was put on the "fall risk" list because of my potential to pass out and hit my head in the bathroom. This included an alarm on my bed, which I didn't take too kindly to. For a girl going to the bathroom every 10 minutes, having to call a nurse was a drag. I got to the point of asking for either a bed pan or a diaper, which I was denied. And what happens when you tell an ornery girl with the runs no? She gives the nurse a reason to change her sheets. A few minutes later, my bathroom door cracked open and my first glorious diaper was handed to me. My first of many, many glorious diapers.

Gloriously sexy diapers. 
The diapers were a lifesaver, as after they released me from solitary confinement in my bed. Making it to the bathroom would still be a challenge for the next two days. Kyle would like me to tell everyone about the time the hospital doctor came in to check on me during his rounds. As he stood there talking, the urge hit. And short of being rude and interrupting him, I utilized the diaper with a smile on my face. He had no clue, but Kyle sure enjoyed the idea that I (who won't event fart in front of him) was sitting there crapping my diaper 2 feet from a total stranger.

The bathroom and those diapers continued to be my friend for the next day, until they ruled out C. diff and I was finally able to take some Lomotil. One dose and things went silent in my gut.

The final verdict was "neutropenic fever and colitis." All samples and cultures ruled out any other type of infection. My body simply freaked out on itself, and my chronic lack of white blood cells. I knew London was not to blame. This was confirmed when the infectious disease doctor finally came in to sign off on my discharge. He seemed far more interested in my trip to London (and seeing Benedict Cumberbatch in Hamlet), than the fact that I walked into that hospital a very sick mess.

This could have happened to me anywhere, in any country. I'm just grateful to have made it almost 4 years without ever being sick while my counts are extremely low. I went home, resumed drinking my daily dose of kefir, and within 48 hours things were back on their very predicable schedule and I was full steam ahead.

Mommy can go to London and the hospital any time she wants if it means
this kid ends up with a giant bar of Cadbury.
At least it's on the rocks, and not room temperature toilet water.
CT time. 4 days without a shower, and a body that's been to the bottom
and back. Oh, and nothing to control that curly mess that's growing in
on top. Results: inflamed intestines (no surprise) and a preview of my
latest PET - a perfectly cancer-free abdomen.





8.20.2015

From London to the ER Part I

I went to London.

Two international trips in one summer, I know. That's how I roll apparently.

"Life's short. Live simple. Travel big." - Sarah

Only 24 hours before my departure home, the one thing I've been warned about by every single oncologist happened - I got a fever.

The fever is like this dark boogie man story they tell around the oncology camp fire. You never want to see the fever! Beware the fever! Call us any time of day of you get a fever! My first oncologist even gave me a script for antibiotics and told me to fill it immediately if I got a fever.

The fever start after a night in the bathroom. Nothing shocking there, considering the chemo, so I took the assortment of pills I brought to calm all that down, and off to the Tower of London we went to see the royal jewels before the mad rush. It was there that I just couldn't get warm, and I kept wondering if the back of my neck was just a tad too toasty. It had been years since I had a fever, so I think I was in denial.

By mid-afternoon we were back at the flat and I crashed. I assumed a few hours of sleep would have me back in full form and ready to make the most of my last night in town, but it found me still in bed and starting the adventure that would encompass the next 5 days.

This is where you will want to stop of you can't handle the truth. The dirty, bloody truth. And I'm using bloody in the British sense AND in the literal sense. This is not going to be pretty.

Remember that diarrhea from earlier? Well it never went away, and combined with the fever, my intestines got angry. When the intestines get inflamed, it's something called colitis. And with collitis, comes bloody diarrhea. Only I had nothing left in me, so it was just blood. I wasn't remotely alarmed by this, as I knew my colon was in tip top shape otherwise and I was very well read up on this very subject. The average person would have and should have freaked out, but not a girl who is well read on the subject and is confident in her otherwise healthy colon.

With less than 12 hours before take off, I needed to start formulating my plan to get home. There was no way I was going to give myself over to the NHS, so I needed to suck it up and get thee across the pond. It started with my seat. At this point I was willing to pay those premiums for choice seats if it meant I could be close to the bathroom. Not only had they released all the seats for your choosing, there she was in the last row, on the aisle, directly across from the bathroom waiting for me.

One less thing that required effort.

I spent the flight home trying to look well. I slept off and on, made unnoticable trips to the loo, covered myself in my blanket to hide the shivering from the fever, and dutifully took my Advil before we landed in the event they were scanning people for body heat a la the Ebola days. Why a thought like this even occurred to me I don't know. I just wanted to get back without being quarinteened, and I didn't want to cause some in-flight panic with a fever.

I'm not going to lie, I felt extremely sick. I was very dehydrated, extremely weak, and feverish. My plan was to head straight to the ER once I got home. If I was a normal person with a fever, I would have gone home and gone to bed, but given my compromised immune system and the colitis, I knew the ER was the only option for me.

As we were getting off the plane, I was trying to plan ahead and consider how I was going to conserve the most energy possible. I was going to be in the back of the customs line, and my plan was to just sit and scoot on my suitcase through the long line. As long as I could sit, I would be OK.

Once off the plane, I kept noticing signs for all passengers without checked baggage. Apparently they (me) were to stay to the right, and everyone else was to stay to the left. At this point I was asking myself why I did TSA Pre-Check over Global Entry. The signs kept coming until I came upon 2 customs agents and a sign that indicated they sitting there exclusively for passengers traveling without checked bags. It wasn't too good to be true. There would be no long customs line. Just one man in front of me, and 2 customs agents to handle us both. Wtihin 3 minutes I was through customs.

One less thing that required effort.

Having run this international terminal drill at ORD on my way out of town, I knew there would be a tram and I would have to go back through TSA to get to my domestic gate. A quick check of my UK-printed boarding pass showed that it did not bear my beloved TSA Pre-Check mark, and as I came down the escalator from the tram, I could see the long TSA line. My exhausted body wanted to collapse at the though of waiting in it. I considered pleading my case to a ticketing agent, and then decided to take my chances at a domestically-printed boarding pass at the kiosk at the foot of the escalator. Surely they would let me print a new one, right?

"Hi, Sarah. Would you like to reprint your boarding pass?" Why yes, yes I would. And through to a completely empty TSA Pre-Check line I went with my newly printed Pre-Check bearing boarding pass.

One less thing that required effort.

My next obstacle was finding my gate and its relation to a bathroom. Worst case I thought I could position myself between the bathroom and my gate, and just hover until it was time to board. The women's restroom ended up sharing a common wall with my gate.

One less thing that required effort.

Then I crossed my fingers and hoped this would be one of those full flights where they were begging people to check their carry-ons to their final destination. I didn't have the energy to lift that baby one more time and try and cram it into an overhead bin that was packed with improperly stowed carry-ons. Suitcases go straight in with wheels out people. And if it fits under your seat, put it under your seat and save the overheads for those of us with suitcases.

"Ladies and gentlemen, this is a completely full flight, and we are looking for volunteers to check their carry-ons through to their final destination." Ding, ding, ding! Let me be the first to hand it over.

One less thing that required effort.

I curled up in a cold metal cafe chair by the bathrooms, rested my head on the wall, and waited to board. On the jet way, I could feel myself weakening, and leaned up against the wall to support myself. I just kept begging myself not to pass out, and knew I was bad enough off that I was going to need a wheelchair to meet me at the gate. Unable to find the option to request one on the Delta app since I had already checked in, I texted Kyle and told him to try get me one. It was the last text I sent before we took off, and the reply upon landing let me know I was going to make it.

There on the jetway, holding an iPad with my name on it, was the man who would push me down the home stretch.

One less thing that required effort.

The wheelchair took me to baggage, and Kyle took me straight to the ER, where I walked in and told them I was neutropenic, running a fever, and shitting blood. That right there is how you get admitted immediately folks.

And thus ends Part I of this story.