Patience, Grasshopper

There are days I have more gratitude than others. I’ll admit, strong as I’d like to consider myself, I fall into the trap of wondering why this happened to me, why this was chosen as part of my fate (if you believe in such a thing as fate). Why me and not others? I play a game sometimes, staring down at the people shopping at the Gateway. Usually couples. I hate couples. I imagine what misfortunes might be secretly waiting around the corner for them, what unforeseen struggle will come into their lives. It’s not that I’m malicious by nature, sure a little bitter at times, but mostly just curious, fascinated by how one’s life can be altered so quickly and so drastically. When the days are sunny and my body feels strong, I can acknowledge, I can interpret something almost divine in the dramatic shift my life has taken. I see with clarity a direction that could be possible from this new vantage point. When my body is wracked with pain, I can’t concentrate on anything else. Africa feels very far away. New York feels just as far. I contemplate the person I was before all of this, I imagine myself running or stretching or laughing in a simple, naïve way, and that feels very far away. The ‘me’ before cancer feels very far away tonight. Feeding tubes, sets of medications taken at corresponding points throughout the day, fetanyl patches and morphine injections feel much closer to home. It’s days like this that I want to crawl into my bed and bury myself deep under the sheets, some sort of blanketed protection from this involuntary interruption in my life. I retract, pull away from people and things that remind me of how I used to be and try to imagine how I could still be, once I’m done with chemotherapy. How I might look years from now, if I can imagine that far away. Or I imagine how I am now. It really is just that, imagining, because it hardly feels real. I gain weight. I lose weight. My face gets plump. It turns gaunt. My gut droops. My ribs poke out. My legs feel small, my skin turns sickly pale. Every shift brings a new angle to see, different than before. So the only thing constant in this journey becomes the inconsistency of ‘me.’ I am morphing, evolving constantly. How can I imagine who I might be beyond this experience when I can’t even figure out who I might be in a week?

I take each day as it comes and reevaluate how I’m doing and what I can take on. I’m so grateful to have family right now. I’m so grateful for their company and love. They uplift and support me. But the truth is that I am on a solo journey right now, and as much as I’d love to be able to have each and every person in my life intimately understand what this journey is, it is mine and mine alone. My family is wonderful in the simple way they’ve come to accept and embrace that fact. They are always there, standing by for me when I reach out for them. But they understand that there are times I won’t reach out, because it’s something I need to go through on my own.

I think the key to surviving chemotherapy is having a comfy blanket that you can bury yourself in and lose yourself every once in a while, at least for a minute or two.

Slowly Healing

I apologize that it’s been a little while since I last wrote. In truth, I’m not very eager to relive the last week or so. The pancreatitis which we thought was going away quickly turned out to be much more of a veritable foe than I first thought. As soon as I started back onto soft foods, my pancreas flared up again and I was quickly cut off from food or water again. Shortly after, a feeding tube was inserted into my intestine, bypassing my stomach and pancreas, the area that gets inflamed by food or water. From here, I can get liquid nutrition, something akin to Ensure, not enough to give me a lot of energy, but enough to sustain me as I fast. Tough as the process is, from there on out, there was little to do other than keep me off food and water (I’ve been off for over a week) and wait as my pancreas slowly healed itself. My time in the hospital was very taxing, mostly mentally, as I spent long days in the hospital with my only relief from the pain being morphine injections which I would receive fairly regularly. I was in too much pain to do much other than lie in bed and take small walks. But slowly (after what felt like an eternity) the pain lessened and I began to notice small improvements. Each day, I would require less and less morphine, signaling that my pancreas was finally beginning to calm down. My spirits were revived greatly when my friend Annika came to town to cheer me up. We spent the weekend in the hospital taking small walks, watching as many movies as we possibly could, and laughing with each other about life, our silly plans for the future, and our complete inability to control any of it.

This process is baptism by fire. There’s no other way to describe it. I feel as though my body has entered a harsh crucible, slowly melting down all parts of me and exposing a core: rough, hardened, but also strong and resilient. I am inspired by a passage I read in a book recently: Only to the extent that we expose ourselves over and over to annihilation can that which is indestructible be found in us.

I am finally out of the hospital as of yesterday. I am still limited to a feeding tube and not allowed to eat or drink anything. My pancreas has a ways to go before it is fully healed, but it is also imperative that I begin the third round of chemotherapy as soon as possible, before the leukemia has a chance to metastasize. Hopefully this will happen within a few weeks. My timetable has once again been pushed back greatly, but I’m learning to forgo my attachment to an ‘end date.’ My body will be ready when it is ready. That much has been made very clear to me over the past few weeks. Peace and love to you all.

Balancing Act

I’ve graduated to soft foods. It’s an accomplishment. It’s taken me (or should I say my pancreas) almost six days to get to this point. A team of doctors woke me up this morning with the good news that my pancreas is healing well and doing much better with food-intake. They suspect I’ll be well enough to go home in a few days. At that point it’ll be a matter of resting for several days before coming back into the hospital to begin round 3 of chemotherapy. That’s right, more hospital love. During round 3 of chemo I’ll be receiving a pretty intense drug called methotrexate. So intense, in fact, that they need me in the hospital for four days every time they administer the drug to me, just to be on the safe side. I’m a little anxious to start this next round. The doctors said that methotrexate is ‘no walk in the park,’ to quote their words. What am I supposed to do with that? Such vague descriptions I’ve come to expect from the medical world. Still, they give little comfort.

I never used to be any good at jumping off diving boards. I was always that kid who would hesitate for a bit before squinting and finally, after extensively analyzing the options, jumping. That doesn’t work so much with cancer. Very often, you have no other choice than to leap blindly forward, no hesitation allowed. And you seldom know what you’ll land on: firm, level ground or uneven, imbalanced uncertainty. The balancing act becomes learning how to prepare yourself for either possibility. I won’t say I’ve got the act down yet, but I’m becoming a whole lot more comfortable with it.

Halloween Update

I’m writing this blog to you all from the Huntsman Cancer Institute, where I have once again been admitted as a patient. You may or may not be familiar with the circumstances, but a chronic pain in my abdomen which has spread to what feels like my back, pancreas and stomach, has become rather unbearable over the last several weeks. The difficult part of it all is that despite the tests my doctors have done, each one has thus far come up inconclusive. It’s good news in that they can’t detect anything severely wrong with my system, but it’s anguishing to know that something you are experiencing on a very visceral, tangible level isn’t understood by anyone here. The answers up until now have relied mostly on heavy duty painkillers that can be administered orally. Unfortunately, over the last four or five days my stomach’s developed such a sensitivity that I’ve had a hard time keeping the pills down, or even food and water for that matter. Saturday night the pain reached a crescendo and Erin and James drove me up to the University of Utah’s Emergency Room. I was administered several doses of morphine to control the pain, and was given a fetanyl (sp?) patch, which works by releasing small doses of the narcotic into your system over the course of three days.

The patch was a temporary solution, but I see it as only that. It’s very difficult to be so ‘out of it,’ much more than I’ve ever been. It makes me unable to focus, concentrate or even sit still. We agreed with our doctors yesterday morning during my weekly check-up that this was in the ‘temporary fix’ category. Instead, my doctors are trying desperately to get to the bottom of this mysterious pain. They checked me back into the hospital with the intent of keeping me here until some answers are worked through. It’s important not only for my health and well-being, but because I am unable to start my next round of chemotherapy (which I would like to start as soon as possible) while my body is in jeopardy.

Right now, we have few answers. I should be meeting with a group of Gastrointestinal doctors today to run some more in depth tests. Hopefully something will come out of it all. In the meantime, I’m praying for health, for this suffering to leave and for the ability to get a little ‘normalcy’ back into my routine.

We’ll keep you updated as we hear anything new.

Judd