Today’s visual:

I made it out of the bedroom and am sprawled out in the green pleather recliner found in the corner of the living room with my trusty wheeled cart of goodness parked beside me. Let me tell you about this cart! It has 3 tiers:

1. Tier 1 (the top)
   1. I have a bamboo tray for books and journals: in it right now are the following:
      1. My medical/book journal with a uni-ball 1mm bold point pen (this is quite a delight to write with)
      2. Books: Bets by Carrot Quinn, World of Wonders by Aimee Nezhukumatahil, The Mission Walker by Edie Littlefield Sundby, One Long River Song by Brian Doyle, Writing Wild by Kathryn Aalto, and West with Giraffes by Lynda Rutledge
      3. Another bamboo tray with earbuds, an external power bank, a tablet, remotes to the bed, and the light behind the bed, 2 phones (I am still trying to transfer my old phone to a newish phone and it’s taking forever so I just keep the 2 phones around) and a headlamp
      4. Water 
      5. Another bamboo tray with personal items: glasses, contact solution, wet-wipes, hand sanitizer, various creams, and such
      6. A desk organizer with spots for pens, paperclips, cough drops, hair ties, letters to mail, it’s a veritable junk-drawer sprawl of stuff,
2. Tier 2 (the middle)
   1. Bamboo tray of thank you cards (Glen Van Peski has been amazing at keeping me stocked with all sorts of cards and notes for me to send my thanks….he was one of the first people who impressed me with his thoughtful note-card habit. It’s always a wonderful feeling to get a handwritten card from someone you admire, and I am thankful he is keeping me in supplies so I can write to all of you! (by the way I need so many of your addresses…especially for all of you go-fund-me people, I’ll track you down somehow, or you can just email me your addresses??)
   2. Bamboo tray of cards that have come in (I love mail! Thank you!!!)
   3. Magazines (including my new subscription to The Atlantic along with the last edition from my old Harpers subscription) some coloring books, laptop, random reading magazines and such, and a section with my full plug-in earphones and sound vibration cuffs; 
3. Tier 3: medications, overflow medications, pee bottle, extra water bottle, snack bucket, puke bucket; 
4. The control center: on the back of the cart is the technology center. Kirk has it wired up so any cord or plug I might need is available via an attached power strip, so said power strip can be plugged in wherever I am: in the bedroom or in the living room and we can have the juice when we want it. This cart is everything!

So today. It’s late afternoon, so the winter sunlight’s low angel suddenly breaches the slats between the blinds to confront me full on. I bask, then wiggle, then wince to try and get away from the aggressive rays…I am unable to cover or protect, and am suddenly transformed into a large pinned bug with a new sympathy for ants and magnifying glasses everywhere. I manage a garbled “help” out to Kirk who is napping on the couch a few feet away, “Please close the blinds or move the sun or something!” The imagery of a fat crusty bug pinned to my chair is suddenly too much. Because I am that fat crusty bug. I’m pinned.

I do realize this phase of my illness is passing, and may not happen again. Does that make it bittersweet? The relying on my partner to do everything little thing from freshen up my tea to wheel me to the bathroom to put on my socks? We joked that we didn’t think we’d get to this level of intimacy for many more decades…the wiping of bodily fluids and soothing of back sores, that sort of thing, but here we are, doing it, and with a laugh on our faces most of the time. I guess if you can still laugh about it it can’t be that bad?

So my body might be able to break free soon, and I’ve been taking liberties. Kirk might say a bit too many liberties.

I’ve been standing a bit more with my cart in one hand, moving slowly about, or just standing to stand. My hips seem to be taking it ok, there isn’t a worrisome bone ache when I do stand, so that is encouraging. The radiation might be finally taking effect! I’ll do some more standing these next few days until mid-week when I plan to unleash a walker out of the garage and take some tentative baby steps, much like I did some 46 years ago in a farmhouse in Wisconsin. 

And they will have to be baby steps! My legs have shriveled up into ghosts of their former power (I know, I tend to glorify my muscular body from before times…the times when I could hike 30-miles a day across challenging terrain carrying 6 liters of water, 5 days of food, and enough supplies to be self-sufficient and solo for a week. (And sometimes those supplies included a book and a small box of wine…a girl’s gotta live, right?) I have always been intent on living it up, especially on solo hikes where I can do and be and exist with no one watching, no one judging, just me and the whole wide world. Now that’s a level of freedom I am looking to regain on the other side of this. Being alone in nature. It’s unlike anything else you can experience in your lifetime. It’s true acceptance and love.

But I digress. I’m a bug for a week longer, and then this brief phase of dependence drains away as I gain more muscle and movement. I will have certain limitations for a while longer of course. Driving…I won’t be driving until my neck brace comes off, and even then, I have a sinking feeling there might be another surgery waiting for me in the wings to address my 80% collapsed vertebrae. It will really suck to have to start the clock all over for a 3-month stint of recovery, but this is my ugly winter and spring phase. Let’s get all the sucky things out of the way now so that I can emerge this summer ready for fun and sun. (maybe????). 

There are still so many unknowns about what’s next…the latest development is almost too devastating to think about, so I’ve been somewhat avoiding it. My biopsy didn’t work. Somehow the piece of tissue they took from my back on December 19, and the full C4 tumor they removed on December 21 either didn’t have enough DNA to extract the mutation information they needed, or the sample was compromised and old enough by the time It was sent to the lab, or it just didn’t get where it was supposed to go, that we have to redo the whole biopsy now, sometime in the next week or two. My oncologist is beside himself in frustration. It’s frustrating. We thought we were waiting on a super duper long test, but in actuality, someone probably knew it wasn’t viable and was just biding time before getting in trouble. The flip side? Dr. Schmidt did say my body was responding to the chemo…I had some labs taken from my port (now found protruding out of my right chest above the breast below the clavicle) when I went into the clinic on Thursday morning for my second chemo treatment. My labs are looking good, I’m responding (although in what vague ways I’m not entirely sure), and he claims that he would want me to go through the four full rounds of chemo before introducing any fancy-schmancy mutation-fighting drug into my system anyway. So maybe we aren’t losing that much time after all, But we may be losing the time they would have to concoct or research the perfect pill combination that will send my cancer cells packing. It is what it is.

I think the other side of my “eventual silver bullet of a drug” news is that I could get more radiation. Maybe I want to get more radiation. I’ll have to talk to my docs. Now that proton therapy plans to wait until the magic drug takes effect, maybe it’s time to radiate my ribs and cervical spine some more. After all, I still have tumors growing in the bits of the C4 vertebrae they didn’t remove, I still have tumors all up and down my neck and spine, and man, what I would give for some bone-boosting rays to relieve some of that pain and give me the confidence to sit up straight again. But really, it’s the ribs. My stomach and ribs are feeling quite tender, my guts are feeling diseased and I’d love give them a break. We’ll see, this is a full care-team (care bear stare anyone??) effort, and everyone needs to be on board with next steps.

If I don’t get any additional radiation-between-chemo-sessions I could be looking at a few weeks of downtime. And by downtime, I mean sitting through infusions every three weeks until the end of March? And what would happen then? Would I be fully walking? Would I be in any more pain? Would the wonder drug be dispensed at that time and I can start re-engaging in life again? My re-engagement strategy looks something like this: daily sunrise walks along the river, a really good cup of coffee with foamed oat milk (a splurge Kirk and I got this week, a milk frother!), several trips to the senior center to walk in their resistance pool or do some light pool PT, yoga, walks with friends, more walks with friends, lots of reading…and the reading 🙂 so many fabulous books have been gifted to me these past few weeks that I’ll have enough reading material to last me for quite a while. Which, if you didn’t know, I like to read. 

When I was deposited in Zogore, my village in Burkina Faso for Peace Corps in 1999, my coping mechanism was reading. I kept track of the books I would lug back on my trusty green trek bicycle from the hostel in Ouahigouya once a week tallyed up some 230 titles. I tend to think my coping mechanism was a bit healthier than some others I could have indulged in.

I will start cooking. I’ve always had this romance with cooking, or rather eating. I love to eat, but often get impatient in the whole cooking phase because I just want the taste in my mouth as quickly as possible. But in this is a period of intentionally slowing down, and with my new-found respect and interest in vegan cooking and baking I want to take the extra time to do it right. 

There are cashews to soak, there are grains to grind, there are sprouts to grow. I hope to take delight in these culinary pursuits even though they never really captured my attention before. But I have some good teachers and role models too. Two of my besties have been impressing us with their culinary skills for years now, and have also had me and Kirk over for a few Sunday dinners lately. We sit and snack while Brooke and Adryon whirl and twirl around the kitchen making delight after delight. Our job isn’t half bad, we get to play with the new babies, Arlo, their sweet Great Pyrenees puppy who seems to double in size every time we see him, and Remy, his kitten companion. Those two are absolutely precious together, and even when Arlo gets a little rough with Remy, the cat hasn’t brought out the claws yet to bat him back or show him size isn’t everything. Booke and Adryon’s cooking, their wonderful home, endless kindness, generosity, and animal love have been a major life force for me these past few months. I know they will have plenty of tips and cookbooks to share with me should this cooking idea of mine really take off. (or maybe I’ll just eat good food at their house, we’ll see!). 

I did splurge on a bunch of juicing stuff when I first got home, and I do want to spend more time doing that. One of the websites I’ve been following has folks making and drinking copious amounts of juices throughout the day, and in some of the comments people share that they spend 2-hours making juice every day. 2 hours! We’ll see if I have time to commit to a 2-hour juice pressing regime. After all, I’ll be walking, reading, swimming, eating, cooking, visiting with friends, reading, puzzling (don’t want to forget puzzles!), writing, watching movies, playing Zelda (I hear that game might be up my ally), and more. 

So maybe I’m not ready to be out of my pinned bug phase after all. It’s pretty quiet and sweet in here. Not much is expected or demanded of me, in fact, I’m the one doing all the demanding. Snack please! Can you grab me some warm socks? I dropped a book, I dropped my snack, I dropped my sock and I can’t pick it up. Kirk will be ready for the next phase, but again, will he miss rubbing cream on my back and ushering me to the bathroom several times a day? Only time will tell.

This bug is going to get snug in her rug for another go at sleep tonight. Putting on a podcast has been helping to occupy the brain enough that it finds its way back into the dark slumber, so I might give that a try here soon.

Until morning….