So where to begin?
It’s been a while since I’ve sent out a newsletter, at least I’m assuming so since four or five different people have texted and/or emailed me the last couple of days to ask how I’m doing—specifically citing the need for such a question because of my lack of recent newsletters.
The messages have pretty much boiled down to statements like:
“I’ve not seen any updates in my email lately…”
“You’ve not been posted blog links to social media…”
“Even if you don’t have a health update to share, keep sending the newsletters—they’re very inspirational…”
“You’d better pay up or we’ll break both your legs. Also, what’s up with the lack of newsletters? The boss has been asking.”
(Just kidding about that last one.)
I’m of course tickled pink that people are missing the weekly updates. Nothing makes a writer’s day quite like knowing that people WANT to read your work, so I’m taking my own writing advice and working my way through this block. Because that’s what has kept me from sending anything out: writer’s block. I just haven’t had the creative juice necessary to crank out anything.
Part of that was due to the exhaustion I’ve been battling. Getting over my previous chemo has been a bit of a struggle; my body was damaged more than I realized and sleep is obviously good for healing, so I’ve done a lot of it (just not always at night).
Like FOLFIRI, the new chemo makes me sleepy as well, and it actually affected my mental acuity for the first few weeks. I noticed a LOT of spelling errors popping up in things I wrote, not to mention the fact that Rachel found it difficult to hold even a simple conversation with me. I would struggle to find the right words (or sometimes ANY words) or drift away into a dream while talking, often saying words in my dream out loud to Rachel.
At first it scared her; now she just laughs and waits for me to snap back to reality. That’s what 20 years of marriage will get you: complete, unconditional love and the occasional bout of hysterical laughter at your foibles.
Since it’s been a while between updates, let me share some of the more recent developments:
I am responding well to the chemo, at least, according to my bloodwork. While we won’t know how effective it’s been against the cancer until after a PET scan in October, the doctor is very pleased that my blood levels have improved and held steady. Lonsurf can destroy white blood cells, platelets, and other components of your blood, leaving the patient vulnerable to infection and susceptible to illness. While my blood levels dipped after the first round of medicine, they’ve rebounded very well and the doctor is hopeful that I’m doing well with it.
My anti-depressants seem to be agreeing with me. Not sure how much of an effect they’ve had, but they’ve not made things worse, so I’m taking that as a sign that they’re working like they should. According to the doctors, it takes at least four weeks for the medicine to fully integrate into a person’s system, so I’m right on that cusp. I’ve not had as many episodes of anxiety and overwhelm and I’m sleeping more at night (though not sure how much of that credit goes to the sertraline), so overall I’m pleased with the results.
I’ve started physical therapy to train and work on building back stamina. My PT specialist is a wonderful woman named Lori, who helped me out earlier in my journey. As I said, the FOLFIRI did a number on my body, so I’m reduced to exercises I can do while sitting or lying down; leg lifts, footwork, small stretches. Any activation of a muscle or muscles results in my being winded after only a few minutes, so we’re keeping the reps and intensity low. Candidly, I hate it—it’s easier to just sit and do nothing than even the smallest, easiest exercise. But that’s not going to get me back toward normal, so I’m pushing myself to stick with them (even if I’m not super consistent).
The draining of fluid continues to work well. Swelling is going down steadily, my weight is stabilizing around 140, and my breathing and eating are better (eating still needs work, but hey—we’ll get there). We’ve been amazed that we’re able to pull 1000mL off EVERY DAY without the slightest hint that we’re running out of fluid, and there have been a couple of days when we’ve had to take an extra 500 off at night. It’s just incredible that much stuff is just floating around, waiting to come out. And when it does come out, it feels amazing.
On the whole, when I’m not sluggish and half-asleep, things feel like they’re on the upswing. We’re hopeful people, so we’re looking for the glass to be half-full anyway, which y’all know because that theme works it’s way into darn near everything that I write in these newsletters. But hope is essential in the battle against long-term illness, and in life, so I’m going to keep writing about it as most people have yet to fully embrace it.
The other thing that keeps me going is love—love for Rachel and Ella and Jon, but also their love for me. The depth of feeling we have for one another and the connection we enjoy keep me fighting, even on the days when hope runs low.
It’s a blessing to be surrounded by such strong people, who share their strength with me through service and more traditional gestures of love. I enjoy the hugs and the kisses as much as the times when they plop down on the couch or chair and want to process something that happened at school.
They keep me involved in their lives and they happily keep themselves involved in mine, which fuels my soul like few other things. Add it all up and I’m a blessed man, even with a debilitating disease trying to kill me, which is a hard sentence to type. But I have the strength to type it because of my family and the love we share.
Maybe you feel the same way about your family; I certainly hope so. If you don’t, I hope you’re able to find it somehow, some way. Perhaps it will be with family you choose rather than family connected by DNA; maybe it will come through a group of friends that you grow and assemble as you move through life, or perhaps through co-workers.
Wherever you need to find it, my prayer is that you do, and that it changes your life for the better.
As you were reading, chances are you thought of someone who would benefit from being part of a group like this. Use the button below to share this post with that person and invite them to subscribe to the newsletter and join our community.
As a final thought, let me just offer my thanks to each person who encouraged me to return to the newsletter and keep it going. I worry about boring y’all with weekly updates (even though you tell me not to…) because there’s so little radical progress.
I guess I feel guilty that I don’t have something more exciting or amazing to share; but that’s not why y’all read this thing anyway, is it? You read because you care. And because you find some kind of value in what’s being shared—either by me, or within the community. Or maybe you read for some other reason.
Regardless of what your reason is, I’m glad you read. I’m glad you find value. I’m glad you care. Your kindnesses and prayers provide me strength and contribute to my hope and recovery; hopefully you’ll find the same as the newsletters continue.
As always, thanks for reading. Don’t forget to leave your prayer requests in the comments at the bottom of the page so everyone can read them. I’ll be back soon with another edition.
Have a great week and hold on to whatever hope you have, wherever you find it.
Best,
Jason
Prayer Requests:
Jason—for the company that sends me my drain supplies to do a better job timing their deliveries; for insurance to approve the release and shipping of my drain supplies earlier than the 1st of every month; for continued positive response to chemo and rehab; for willpower to exercise and build myself back up.
Rachel—for peace and patience with the busy pace of life; for continued willingness to serve as the family Uber driver; for continued spiritual growth and development; for continued closeness with Ella and Jon and myself.
Ella—for continued success in school and ballet; for her application to the Governor’s Honors Program (Dance); for her to enjoy her sophomore homecoming dance this weekend; for her performances as Snow Queen (a big lead role!) in her ballet company’s edition of The Nutcracker.
Jon—for continued success at school; for him to adjust and adopt better study habits; for his school improv group performance; for his continued growth as a young man.
You—as I stated in the last news letter, you’re invited to leave a comment with your prayer request(s) in the comment section below. If you’d rather share your request with me privately, you can click on the button below and send a comment to my email.
I’ve prayed for every person who posted a comment on the previous blog, and I hope some of y’all have prayed for them as well. This is part of being in a community, so I hope you’ll join in and share whenever you feel prompted.
Glad to get another newsletter!
Happy for the newsletter. I had been wondering too. Glad things are steady. I have applied for an admin assistant job at my work. I think it will be a couple of more weeks before I find out the outcome. Just pray I will be ok if the outcome is not what I want to hear. Love you Jason and family!