Ok this is a very random, very awkward, very…something video entry today. Enjoy if you’re able!
Awkward: Video Blog 8-1-12
Reply
Category Archives: Cancer
Heavenly Thoughts…
One of the most important tenants of the Christian faith is the hope of resurrection. The Jesus message brings huge value for today because it invites us into a story that challenges how we do life: beckoning us to a way of life that is marked by compassion for the outsider, hospitality toward the stranger, mercy toward the weak, dignity for all, love to each other, sacrifice as a means to life, and so much more. But without resurrection these ways of living come to a violent end marked by death–and end that is not fitting with the story being told. Because the reality, clearly, is that our bodies and this world are decaying. They are. But in the story of Jesus there is a promise of new life, a promise of a restored and renovated creation where everything will be brought back to its original purpose and intended beauty.
This is the day I live for.*
That day…
I dream of a day where my body won’t hurt. Where going to the bathroom won’t be a chore (yes in that day I’ll still be going to the bathroom because…)
I dream of a day where everything I eat will be exquisite and deliciously fresh. Where the food that goes into my body makes my body and my tongue satisfied beyond belief. Food will forever continue to be the gift God intended it to be but without all this extra jiggly stuff added on.
I dream of a day where fighting will end, where peace will not even be something we fight for because it will be our one and only reality. There will be nothing outside of an existence where people are not stepping on other people to gain, destroy, and control. Peace will control us.
I dream of a day where we laugh a lot and laugh often. Where the tears that stream down our face are from good jokes rather than sorrow, pain, or grief. I imagine that we’ll discover that God gets more of our crass jokes than we ever gave him credit for–that’s the day I dream of. (cards against humanity anybody?)
I dream of a day where everyone is welcome around the same table to feast on the aforementioned food. There is no exclusion based on race, economic status, sexuality, or politic. We will all feast together because we have all been invited to the same exquisite table to feast around, because we all belong, because…because we’ve all accepted the dinner invitation.
I dream of a day where creation isn’t falling apart. Climate change, hurricanes, hail storms, they will all be relegated to a place of grief over our past rather than a worry in our future.** Creation will be what it was forever intended to be except it will be more alive now than ever before. New colors, new trees, new animals will fill the horizon as we experience life unabated.
I dream of a day where our choices are not marked by destruction. We will no longer make choices that destroy ourselves, destroy our bodies, and destroy our hearts. Instead our choices will be marked by exploration, by intrigue, and by love and fascination of self and otherness.
I dream of a day where I will be married to my wife forever. We will live and walk in unity, keeping the commitment to each other that we so desperately do not ever want to break. We will continue our exploration of life, romance, and otherness together as we journey deeper into eternity.
I dream of a day where there’s time to read–where there’s always time to read.
I dream of a world where reality television has been unmasked for what it really is: cheap programing.
I dream of a day where orphans and widows have a seat of honor and are cared for with extra respect and dignity.
I dream of a day where i can ride a bike again.
I dream of a day where we still have cars. Better cars. Cars that don’t break down as often.
I want to dream more. I want to dream lots of things. I want to dream bigger than what I’ve shared above. And I know, (I’m banking on it), that my dreams won’t even touch the amazingly beautiful reality that we’re going to be invited to enter into one day…now that’s something worth dreaming about!
* Though, if you know me and my wife and my family and the lives we try to live I hope you’ll know that I have not fallen out of the boat on this side! I have not given up on the truth that in living for today we have the gift of truly seeing and experiencing every day as a glimpse into eternity. I truly believe that we can bring pieces of that futur reality into today. So lets not miss that when I say that I live for that day because much of that day can be brought into today! (talk about good news right?)
** Yes, in my future dreaming there is still a place for some grief and sorrow. We cannot live a new existence if we’ve forgotten who we are or where we’ve come from!
MRI Results: A Few New Friends
It’s official: I’m dying.
Ok, ok, that’s true of all of us and it was true of me as much last week as it is today. It’s as true of you today as it was true of you yesterday. But once again we were reminded of the reality* of our situation, of the nearness to death that I am living, and of the seriousness of my illness. Being completely honest, those are not all things that i really need to be ‘reminded’ of because my body is constantly reminding me of those truths. It’s for this reason that six weeks ago the good results we received back were so disconcerting: they did not match what my body was telling me. This weeks results were quite the opposite.
MRI Results
Only hours before literally one of the best birthday parties I’ve ever had thrown for me the results came in showing that my original tumor (the one that shrunk by one centimeter last time) has stayed the same. This is good news. The bad news is that two new tumors have emerged inside my spinal cord. The smaller of the two is 1cm across and is in the base of my neck. The larger is a 1.5 cm tumor located in my middle to lower back (right where my bladder function is controlled ironically). Additionally the ‘sheath-like tumor‘ that surrounds my spinal cord has begun to thicken or constrict down near the base of my spine. It was great to be able to celebrate with the people I love and forget for a short period of time the reality that lay under the skin. Some of you drug the news out of me but for the most part Jess and I chose to enjoy the scenery and the company.
What does this mean?
It means that I’ve still got a nasty type of cancer that prefers to continually grow and spread itself in invasive ways. That’s the nature of a GBM. That’s just what they do. It means that my current method of treatment is not effective and we have the choice to start something new or to essentially give up on traditional medical treatment. It means that I met with my naturopath yesterday to talk about my oncologists suggestion of a new chemo. And, finally, it means that today we’re going in to initiate my new once-a-month chemotherapy treatment. For clarity sake here is what things look like: every two weeks I will continue taking the Avastin anti-body drug that I’ve been on. Once a month I will start a new chemo that will be potentially more invasive than some of the drugs I’ve done before. And simultaneously through it all I will be taking a specific regimen of herbs and supplements tailored to the medical treatment I’m receiving (something we’ve done since day one). The probability is that I’ll finally lose my hair, I’ve probably got a season ahead of me where I’m ever more tired than I’ve been lately, and I might be dealing with some more extended nausea fun.
Telling the Kids
The kids were looking forward (maybe ‘looking forward’ isn’t the best way to capture it!) to these results. After getting the ‘good news’ last time India was so ecstatic that daddy’s tumor was smaller that she quickly opened her worry box and let all of her worries float away “up up up into the sky like balloons so that they’ll never come back”. Jones quickly balanced that hopefulness with “Even with the good news, my worries aren’t floating away. They’re made of steel and they are not ever going to leave.” So we were worried about her gentle little spirit, worried that she’d be crushed. In the end, as we expected, it was the thought of daddy losing his hair that was most worrisome. And so both kids came up with backup plans for daddy. We’ll have a stash of wigs, of green eyebrows, some watercolor pencils to draw on angry eye brows, happy eyebrows, etc. If or when it comes to it they gett to have the fun and pleasure of cutting daddy’s hair at our friends salon–something that seriously piqued their interest.
The End
In the end I’m not sure quite where I’m at nor how I feel. I’m certain that whatever it is or wherever I am at I’m not ready to share it here. I am feeling fine–which is usually not a very connected or healthy place for me personally to be (I can be eternally fine and live in this fine place for a inFINEtely long time to the detriment of myself and others!) I do know that in many ways nothing has changed. These results have validated many of my new symptoms, they have corroborated what my body has been telling me for two months which in a strange way is quite comforting. So in that respect, from that perspective, nothing has changed. And while nothing has changed…we are still desperately looking for, praying for, and hoping for a miracle. It couldn’t come sooner if you ask me. But, again, our faith is in God not in his willingness or ability to heal me.
Here’s my final though about all of this. In the end Jessica and I are realizing more and more that all we’ve ever been given is today. It’s cheesy to say. It is so incredibly painful to practice in real life. And it definitely has the potential to be one of the most trite things an individual who is not connected to a person’s story can say to someone suffering or grieving–but in this life today truly is all that we have been given. Nothing more, nothing less. I want more. I need more. I have not been promised more…not in this life.
Thank you Jesus for hope in the resurrection.
* Our choice is to live in reality as it is while simultaneously hoping and pleading with God for an alternative reality to enter into our story.
Why I’m a Little Confused
It makes me laugh even as it regularly confuses me. You see, I fall asleep constantly. For example, as I watched the new Batman movie the night before last night I fell asleep at least six times throughout the epic film (while watching it on one of the largest screens known to mankind). I can fall asleep at any given moment in any context. It’s been amusing to be sitting on the front row of a venue where I’m about to speak only to find myself fighting to stay awake! Shouldn’t I be nervously alert and wide awake at those moments? How about while I’m getting pushed around a grocery store in a wheelchair? How about as i’m in a conversation with my wife about important things?! Don’t worry, though, Jess doesn’t take it personally, she realizes that it’s a combo of pure exhaustion, medications, and actual sickness. She knows she’s not boring (clearly she’s not boring!).
I just. I just fall asleep. Everywhere. Anywhere. All the time. Right now….
…
Here’s the funny part though, because I live in a constant sleep/awake state and because the sleep that occurs is instantaneously a very deep deep sleep–I often am unaware of what is real and what has been a dream. No joke. No exaggeration.
Just last night I commented to my mom about how many weeds had popped up in our front yard overnight! I mean, seriously, it had turned in a virtual weed-locked mess out there…oh, wait, nope…yeah, that was a dream wasn’t it? Crap. Never mind mom.
Or the other day I told Jess about seeing Southwest Washington’s famous Dave at the oncology clinic. I started to tell her about it and then we both laughed ’cause we both quickly realized that it was a dream. Ha, Dave doesn’t go to my oncology clinic! Silly Ryan is getting dreams and reality mixed up again…until we were there a few days later and there was Dave at my oncology clinic! Turns out this one wasn’t a dream! How’s a boy to know?!
Over and over again I start sentences and stories with Jess only to realize that they never really happened. To be honest it’s often a little disappointing ’cause they’re usually interesting things to talk about. I wish I were crazy enough to get confused about big awesome things like aliens coming to earth or apple pies growing in our garden or Cheez-its coming out with a new flavor, or something fantastic like that. But, no, it’s usually more connected to a new stretch mark that turned green or our car getting dented or or our towels all getting bleached or…or something simple like that. But it’s still just the weirdest and strangest thing to live in this mystery of what is real and what isn’t. It’s a bit disconcerting but honestly more awesome than anything else. It’s a power that I’m glad my wife doesn’t abuse (could you imagine the power she could wield over me?!)–Actually, hmm, what if she were to constantly play it up? What if she always threw fake things out there to mess with me? I’d be a mess…a hilariously confused mess! Hmm…this gives me an idea. A gift. A gift I could bequeath to my wife right here, right now, forevermore….
Here’s the official deal:
if I ever get to that place where I’m clearly dying soon and I’m practically in a veggitized state I hereby give my wife permission to confuse me with my own ‘dreams’. Hear ye hear ye let this officially be known: Jessica Woods has my permission to do such dastardly deeds without the social ramifications of being considered a jerk in any way whatsoever. This will allow Ryan in his last days to still be a part of something fun and amusing–to which he will be forever grateful. Let it be so.
Yours Truly,
Ryan Woods
Cathing, Control, and Dealing with Disappointment
There are some pretty awesome things about having a Foley catheter, i.e., about having a bag of my own urine constantly strapped to my leg.
- I can pee during virtually any conversation, at any moment, in any context…and you’ll never know…except that for some reason I take great joy in telling people about it (right Dwayne?)
- I no longer need to get up five times a night to empty my bladder.
- It is keeping me from getting additional UTI’s because it’s keeping my bladder from constantly having urine stuck in it.
In general, however, this is not the next chapter I wanted to tell in my story.
It happened like this: over a period of two weeks my bladder was scanned four times after I attempted to ‘clear’ it. Each time, and progressively worse each time, there was still a significant amount of urine remaining in my bladder meaning that a catheter was a clearly necessary evil. To clarify the story even further, on Friday I went back on steroids in hopes that it would reduce inflammation in my spine that was possibly causing the increasingly poor bladder function. Returning to the ‘roids, then, would keep me from having to go the route of a cath again. But on Monday night, when we went to the ER because of some pretty extreme stomach and chest pain, it turns out that post-urination there was a significant amount of urine still in my bladder (900cc!)…and the worst part was that I felt little to no pressure telling me as such. Not good.
Not only did things not improve when I went back onto the steroids but they got worse! So I got a foley cath put in (one with a bag) and most likely tomorrow (Thursday) at my urology appointment they’ll train me to start self catheterizing three times a day (draining it with a tube that you then pull back out).
Here’s the thing–as much as I’m not looking forward to the pain of self cathing, it’s not the physical pain that I’m grieving most right now. The best word that I can find to describe what I’m feeling right now it is disappointment.
I’m disappointed. Incredibly disappointed. Let me attempt to share why.
I think that unconsciously I had made my battle to get off steroids and to have control over my bladder and bowels something of great significance. In a sense they were my last stand, the last place in my physical body where I could have victory and some semblance of control. (Control is what we often seek especially when it comes to sickness and disease. Cancer makes us feel as though life is out of control and I think it freaks us out in a very very deep place within us both as victims and as onlookers) On Friday I was willing to give up on one of my final battles (going back on ‘roids) under the hope/assumption that it would lead to victory over the other battle (the bladder). In the end I lost both. And in many ways it honestly makes me feel as though I’ve got no other battles to fight.*
Going back onto steroids was disappointing. It means that my body is going to continue to get larger regardless of food intake or exercise. It means that the acne rashes will continue to cover my body, the stretch marks will continue to color my body, the nerves on my tongue and over much of my skin will continue to wig out my body, and my sleep schedule will continue to be affected. Going back to the world of catheterizing is utterly disappointing. It’s a painful process done multiple times a day, it’s a process that takes a long time, that is invasive to a life that already feels painfully shut down regardless of my preference. More than anything it’s something that constantly reminds me of the digression of my body–I’m losing. I’ve done everything I can do, I sacrificed by going back on ‘roids, I ate the right stuff, I drank the water, sipped the juice, I got acupuncture, swallowed the vitamins and herbs, I prayed, I wished victory, I envisioned it, I did all you can do and lost.
I’m disappointed.
The Bible is full of laments. I don’t have the statistics in front of me, but a pretty significant portion of the Bible can be considered a lament of some sort. In fact, there are many points that not only capture the lamentation of the people of God but the lament of God himself. Many of the laments found in the Israeli songbook known as the Psalms end with or include a piece of hopeful poetry. For example in Psalm 5 we read:
Listen to my words, Lord,
consider my lament.
Hear my cry for help,
my King and my God,
for to you I pray.
(continued later…)
Surely, Lord, you bless the righteous;
you surround them with your favor as with a shield.
But there are also a whole pile of lamentations that do not end with ‘good news’ of any kind but end awkwardly in the angst, sorrow, and pain of the lament itself. If you’ve read many of my blogs concerning my family’s journey in fighting cancer you’ll notice that most of them end on a point of hope. That’s just how I tend to view the world: through rose colored glasses…and I think that’s accurate to the story God is crafting in my family’s life. I really do see our story and my potential death as a good news story. But honestly I don’t feel like doing that today. Even though I’ve been lucky to be saved from my own moping around the last couple of days due to an amazing wife and some incredibly fun housemates who have brought me to laughter and who have allowed me to forget I’m sloshing around in my own urine on my leg–I’m still not done grieving this one.
I’m fairly certain that most of my blogs end in an implied ellipsis. Very few, if any, end in any other format. And this blog is no different. I’m sad and I hope that the next few weeks bring about a new chapter to this story. Between two hospital visits, debilitating headaches, some vomiting, surgery, multiple visits to the urologist, chemo treatments, sever dehydration, sever constipation, multiple catheters, a leg that’s not working as well, stomach contractions that won’t stop, lack of sleep, and two UTI’s over the last month I am ready for a different chapter to this story to emerge. This blog demands an ellipsis because any other punctuation would be too painful. There’s no better punctuation to capture pain, frustration, or in this situation: my utter disappointment.
… … …
* Please walk with me through this ‘out loud processing’. I realize that it’s less about these battles and more about the ‘war’, that it’s more about beating cancer as a whole. I realize that, as I’ve clarified many times over, control is only an illusion. AND SO as I think through this out loud with you please do not get hung up on the process itself and instead know that I’m sharing a journey. I’m not attempting to capture a ‘right and true’ way to see sickness and control. Nope. I’m processing through how this makes me feel, what questions I’m being invited to ask, and what losses I’m being invited to grieve. Don’t get lost in the journey ok?!