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. 

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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