Chugging along

A little railroad engine was employed about a station yard for such work as it was built for, pulling a few cars on and off the switches. One morning it was waiting for the next call when a long train of freight-cars asked a large engine in the roundhouse to take it over the hill. "I can't; that is too much a pull for me", said the great engine built for hard work. Then the train asked another engine, and another, only to hear excuses and be refused. In desperation, the train asked the little switch engine to draw it up the grade and down on the other side. "I think I can", puffed the little locomotive, and put itself in front of the great heavy train. As it went on the little engine kept bravely puffing faster and faster, "I think I can, I think I can, I think I can." As it neared the top of the grade, which had so discouraged the larger engines, it went more slowly. However, it still kept saying, "I—think—I—can, I—think—I—can." It reached the top by drawing on bravery and then went on down the grade, congratulating itself by saying, "I thought I could, I thought I could.”

I should probably be footnoting this excerpt from The Little Engine That Could. 😬 Obviously I don’t think of Craig as some children’s book character, but his cute face on a blue engine might be an idea to tuck away. Future Halloween? We actually don’t ever dress up for Halloween. Maybe a party theme? Throw-down-post-cancer party decor? 📓✏️ I’m already chuckling at ideas coming to mind. Poor, poor Craig. It’s ok, he will get on board after he sees the design boards I’ll make. 🤔 I digress.

This story of the train engine is one that stuck with me since childhood. It immediately comes to mind as I participate from the sidelines in everything that has been recently thrown our way. No matter how much I want to take it away from Craig and ease his load, it’s out of my reach to do so. I have to sit by and cheer him on while he literally fights for his life on a daily basis. I know I’m hardly alone in the agony of watching a loved one suffer. And it is agony. There is no other way to say it. I know many of you that read this have had your own walk on this path. Sometimes it is immeasurable heartbreak. And sometimes it is unending pride.

It’s terrifying. It’s surreal. It’s paralyzing. It’s lonely. It’s powerlessness.....It’s also motivating. It’s also resourcefulness. It’s also inspiring. It’s also bonding. It’s also discovery. We are 100 days today since diagnosis, and our life has been turned upside down and twisted in ways we couldn’t have imagined. What is was before is becoming a distant memory. And in this exact moment, we aren’t basking in the illuminating lessons it’s taught us. We don’t have all the clarity or insight. We are frankly pissed, exhausted, frustrated, sometimes bordering on defeated, and anxious. But we are even more each other’s “person“ than we were before. We have each other’s back when the other one needs it most. We can still find funny or joking moments even on the bad days. I wish we were testing our trust and love on one of those stupid team building exercises rather than fucking cancer, but I guess this is our fall backwards and trust that I’ll catch you drill. 🙄 So we will wait for our “break in the clouds”. We see little glimpses of it daily as C seems to always make his way back from bad moments and events.

We are facing some new challenges right now. There were always known risks/side effects so this isn’t some whiplash of a revelation. It is, however, a whole new area to hit the ground running on absorbing as much knowledge and info as possible. All indications are a fungal infection in C’s lungs. He has been on prophylactic meds since the first craniotomy (if I recall correctly) to avoid this, but fungal in immunosuppressed people is a real risk. Especially when immunosuppressed for an extended period. He has had some scary breathing episodes over the last two weeks. And some have lasted 15-20 hours. And when you feel like you can’t catch your breath, it brings on a very panicked feeling. I remember being hit in the stomach with a ball when I was a kid (ahem, Morgan 😡 kicking a soccer ball on Laurel Valley) and the fear still sticks with me. And what was it? 30 seconds? 45? Imagine hours on end. And that’s with oxygen. But he just musters every bit of mental stamina to talk his way out of the panic/anxiety, count his way out of it, “breathe” his way out of it, and focus his way out of it. 😢💪🏼. He tried a very low dose of Xanax, but he really hates unnecessary meds. I think that almost elicits more anxiety.

So he is being diuresed (he was prior to as well, but we couldn't quite get ahead of it), and he’s getting a drug called Albumin which helps to pull fluids back into tissue and muscles (equally used over the course of this). I’ll keep this simple and omit a lot of medical jargon. He will probably have a procedure that uses a needle to remove some additional fluid buildup from around the lungs. The sputum taken from the bronchoscopy two weeks ago was sent off to Seattle/University of Washington/Hutch for analysis. They basically grow cultures over a 6-week period to do a deep dive into potential exposure to a million different fungi. Think CSI for fungal culprits. 🕵🏼‍♂️🦠. Fungus (fungi?) lives in all of us. It can rear it’s ugly head especially with use of cytotoxic drugs (cell destroying drugs ie. chemo), and as mentioned, immunocompromised people. So far, Seattle is showing negative. It gets complicated with PCR testing, AFB smear, etc., but so far the big ones related to TB and pneumonia are not being indicated. And there is a physiological component as well. Craig seems to be showing signs of improvement - sure, there are a lot of helpful elements at play, but he is notably responding. We are awaiting some markers for a different fungal that does show indications of being present though. And he is on very strong meds to combat that - which have their own side effects and challenges.🙄 Fungal can be difficult to diagnose. They empirically treat it as risks are too great to roll the dice. Sputum is not the most reliable for testing, but when they did his bronchoscopy, biopsy wasn’t an option bc of platelet count. They may choose to do another bronchoscopy for tissue sample, but that means platelet prepping him for a surgery. We will see. We have added an infectious disease doctor into the mix. This kid - what an adrenaline junkie! 🙋🏻‍♂️

As far as cancer/chemo goes.....we kinda forgot about it the last couple of weeks. It’s been a back burner thought for sure. And he’s on Day 15! And we kinda forgot. 😜 So, chemo is going perfectly fine. He’s pretty asymptomatic like the other two times. After day 7, he has only been on a chemo pill, no more shots. Blood labs have been absent of blast cells (leukemia). 🤞🏼🙏🏼 So we will choose to take that as a good sign it’s doing it’s job. But as always, not a lot of ways to measure blood cancer until after chemo is complete and a BM biopsy is done.

Craig is pretty exhausted. Period. There is a lot going on in his body, and the breathing can really take it out of ya! He utilizes his energetic moments to accomplish as much as possible. Work, PT or physical movement of some kind, personal work, a few friendly visits (medical records vetted 😜), showering, and eating. He is patient with me and my prompting on the eating front. He knows how important the calories and protein are to rebuild muscle and fuel his body. I’m glad his body forces periods of restorative sleep. It needs it. Naps provide a necessary respite from so much mental and physical output.

That pretty much sums up our current status on Day 100 since diagnosis. 100 days is crazy to even say. Sometimes feels like so much more, and other times, how is it even possible? C continues to do his part tenfold. He gives everything there is to give to fight this bitch of a hand he’s been dealt. And we tend to see the hard work edge itself forward. Keeping in mind the Law of Resonance/Attraction/Abundance (yes, reading a lot about mind/body), these quotes hit home:

“Keep expecting and believing that your due season is coming. Declare that the good you have harvested in your life will manifest.” ― Germany Kent

“Cultivate your craft. Water it daily, pour some tender loving care into it, and watch it grow. Remember that a plant doesn’t sprout immediately. Be patient, and know that in life you will reap what you sow.” ― J.B. McGee

Consider yourselves officially updated! Accepting all your T&P’s. 🤔 🙏🏼 Will happily accept any connection to the metaphysical - there are energy forces capable of healing too! 🔮✨ Some of you have a more direct dial-in to God. 😇 Feel free to charge up your long distance. 🤳🏼 Offer your daily meditation to healing his body. 🧘🏻‍♀️🧘🏻‍♂️ Go out and connect to the healing powers in nature until we can for ourselves. 🌳🌍 And in the name of all that is good and decent, PLEASE toss one back for us!!!! 100+ days......😳😩🤦🏻‍♂️🤦🏼‍♀️🍺🍷🍸🥃🥂

Hope this finds you all well,

C & A

❤️

11pm Saturday night. Weekends ain’t what they used to be! 😂

Healthy diet? Do the blueberries count? 😬