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.
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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*)
