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Tears and Seizures

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This isn’t actually happening right now, though it very possibly could because lately it has been happening on and off randomly throughout the day. Right now I’m actually sitting next to my child as I watch him enjoy the classic Simpsons arcade game that I grew up playing. But here it is: I can’t stop crying. Every day I cry. On and off. At times only in bits while at other times uncontrollably. Usually it’s about Jess–it’s connected to some kind of realization of how I’ve wronged her or how she’s loved me in some beautifully perfect way– how she’s loved me in some kind of way that is so beautiful I feel as though I’ll never be able to accept it fully enough. Sometimes it’s about a realization of what I’m going to miss out on in downtown Vancouver. I can almost see it, I can almost see through the fog a new reality emerging in our both “uber old” and “fledgling” neighborhoods that make up downtown. I grieve that I can almost see it and yet won’t be able to touch it. I feel like Moses up on the mountain top being told by Yahweh him/her/it self that I’ve been given the gift of getting the people this close but I shall go no closer.* Sometimes it’s when I realize how much of my children’s lives I’m going to miss, how many moments I am missing right this very moment as I choose to blog instead of doing…instead of doing…of doing whatever it is that I’m certain I’m missing out on doing! Sometimes I just sob ’cause I don’t know what other emotion to feel. Sorrow is all I’ve got left at times…and so I cry. A lot.

Thirty minutes ago (a few minutes after I finished playing the Simpsons arcade game with Jones) I got up and walked my wheelchair (using the wheelchair as a walker) to where my kids were chillaxin. I decided that instead of working on this blog I should sit with my kids for a few minutes before they get sent to bed themselves. On my way to be with the kids, however, I passed out. Oops. It was a slow seizure. It happened slow enough, luckily, for Jessica and Steve to run over and catch me as I blacked out and went to the floor. There was quite a bit of shaking, some twisting of limbs, some awkward gasping and eye rolling,  and just lots and lots of darkness and dizziness for me. It may not have been a horrific seizure (thank you God), but I had a seizure and seizures are certainly scary. They are. Period. Worthy of a few tears. And I cried. The reason I cried, though, wasn’t because of fear associated with passing out. No, the tears were because I was so overwhelmed by these two people who so gently and beautifully cared for me in my time of need. I felt so much love in that lasting moment, I felt so much concern over my life and health. In no way did I feel alone in any sense of the word. How could I have? I was being held in the arms of a woman who in every single way has given everything for me. I don’t remember clearly what she was whispering in my ear tonight (nor do I remember what she whispered during other seizures) but the fact that she was there holding me and whispering anything was enough to keep my body in emotions grip, in the grip of those tears that have eluded me most of my adult life. Those tears that have become so utterly freeing.

It feels good to cry. It feels appropriate, it feels like I”m doing the right thing, like I can’t be judged for crying–I can only be loved. And I desperately want to be loved. Sometimes when I cry, when I really cry and cry hard, I’m honestly just in search of confirmation that I’m not simply wasting time here dinking around waiting to die. The thing is, I think you never feel more human than when you are dying. And that’s an emotional and painful place to be.

*  Let’s not be goofy and please absolutely nobody will be aloud to make any further allusions to me and Moses unless it has to do with our hair or our beards. Unless we’re talking about our massive and powerful staffs, it is a comparison that is absolutely out of place…oh yeah, also aside from the point that we’ve both got siblings, we both had to do a dance for our in-laws in order to have been given permission to marry our current wives, and finally the fact that we’re also dying.

Dying and Entering Hospice!

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As many of you have already heard through the grapevine*, but starting Friday I am officially on hospice care. When many of you read this you may start crying because you’re fully aware of what this means. For many there’s (like myself about a year ago) a vast misunderstanding of the implications of this statement. Ideas of old people dying in hospital beds comes to mind in a hokey type of way–in a manner that feels very foreign to anything that I could even possibly be experiencing. While this may be true in some certain circumstances, what this looks like for my family we anticipate being very different.

So what in the world is happening to Ryan Woods?

Well the reality is that this is the next stage toward death. Like I’ve said since day one (there are probably fifteen things I could say right here huh?): I won’t believe that healing is out of the question until I’m in the grave (or inside an urn, as my case would be) for at least three or four days. Hospice pretty much means that there’s nothing the oncology world can offer me with regard to treatment. They’ve tried everything they can try, given me every drug they can conceivably give, jabbed me with every needle they can jab me with, and have now turned me over to hospice in hopes that they can create as peaceful and comforting an environment as possible for my last days. And that’s where hospice comes into play, that’s where they belong, that’s where they enter on stage right. And so I find myself filled with such a strange set of emotions: on the one hand I carry extreme anticipation looking forward to hospice coming more and more into play in our home and life. This anticipation and excitement, for those of you who are unaware, is because hospice is known for its seriously incredible care and compassion, their single purpose is to bring relief from pain, and to bring comfort to both my wife and I. The downside (obviously!!!) is that you have to be dying to be on hospice! There’s really only one qualification…absolutely one qualification: you’ve gotta be dyin’! Doesn’t get much more simple than that and it absolutely doesn’t get more shitty.**

So Where Does This Leave Us?

It leaves us with adjusting to this new and somewhat final phase in this story. With finding a new normal without chemo treatments and with in-home care. With new realities as we watch my body slowly change and deteriorate. Even though we have been anticipating this coming for a while now, stepping into this new reality is very surreal and has been a roller coaster of feelings ranging from relief to heartbreak. Many of you all are probably asking “what can we do? How can we help?” and the genuine answer at this point is probably–right now? We have absolutely no clue. When we know you’ll know.

In the end we are not in despair whatsoever. Rather we feel very much at peace dealing with reality as it is unfolding around us. God has been faithful thus far in telling a story and we believe that he will continue to do so. Thanks for being a part of it!

 

*  We seriously apologize to those close friends and family who deserved to know this precious information first hand prior to “the grapevine”. Sometimes accidents happen, especially in the social media world that we live in,

** I’m sorry, but “foul” language at this point and in this context is very very appropriate (in my opinion) and is the right word to use. I apologize to those who find this offensive and I think you’d be surprised by the verbiage that you use that I find horribly offensive. (please know that I’m not being argumentative or sarcastic here. I am being incredibly and completely serious)

***  I have to clarify that by “better” I very specifically mean that it’s more feel-goodish because I truly believe that you cannot do better than the Compass Oncology Clinic in Vancouver, Washington. I truly believe that you cannot do better than to have Doctor Kathryn Kolibaba look over your cancer/sick needs all along the way. I honestly and truly believe you can do absolutely no better than what we have received.

Seizures, Constipation, and Lovely Headaches

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Oh how things have changed over the last month or so. For one, I’ve missed blogging in more ways than you know but have had such little brain capacity that anything I’ve attempted to write has turned out closer to this than to this. So be glad, be thankful that I have not written much because it would have fallen into that category of not quite bad enough to be funny but bad enough to make you shed a tear on my behalf. You know what I mean? It’d be bad; bad enough to where if you didn’t know me you’d probably laugh but because you know my story it’d simply cause you to shed a tear or two on my behalf. Nevertheless, here I sit on my hospital bed that puffs up and gyrates randomly in order to make sure that I don’t get bed sores (I accidentally wrote “bed soars” which would be so much cooler than bed sores now wouldn’t it!)–’cause the makers of hospital beds obviously know how long it takes doctors to get results back to their patients–ready to share with you what’s going on in the world of the Woods’ wild ride here in the world we call Vancouver, USA.*

So I’m slowly transforming myself into the Bionic Man as I now not only sport the elbow crutch to help keep my balance but I also use an AFO that has been huge in keeping me from tripping over…tripping over…well…nothing: my own toes I guess. Here’s the reason the brace has been valuable is that quickly, over about a months time, my right leg lost most of its functionality and I began to trip much more often than before. The brace has proved invaluable in keeping me on my feet (literally) and has been much less invasive than I feared that it would be.

In addition to the AFO a new development (and much less helpful) has been the chronic headaches. It started off as occasional headaches (every two weeks) that would get so progressively painful that we’d end up in the hospital with vomiting and me pounding my head against the wall. The ER would fill me with fluids, piles and piles of pain meds, and eventually send me home. At first this happened about every two weeks, then every week and a half, then every week, then every five days, and then the headaches just never left…which is where we’re at today. Essentially for the last nine days I’ve been living off pain killers to keep the debilitating headaches at bay. The docs have ran all sorts of tests, they’ve looked all over in an attempt to figure out the cause of the headaches to no avail.

Today I find myself writing from a bed in the hospital because it was two days ago that my wife found me convulsing and unresponsive in some sort of seizure. Without going into great detail here, this seizure was followed by another shorter episode that may or may not have been a smaller seizure which led to us being admitted into the hospital for the last few days. Bad food, generally unresponsive care, and an uncomfortable bed aside by being admitted into the hospital we were able to get an MRI done that my insurance was unwilling to previously authorize. But thanks to the creativity of my oncology clinic by getting me admitted into the ER we were able to get a full body MRI scan done, get it covered by insurance, and

Thus far there’s no good answers (are there ever?), there’s nothing notable in my brain**, there’s no infections to speak of, nothing. Just me, my wonderful family, and my gnarly tumors (we should get a good Christmas card of the group of us this year!). They’re sending me home, nothing’s changed, we’ll go in for chemo next week like we do on a bi-weekly basis, and wait and see what next week brings! (hopefully some boredom right?) For now we will continue to struggle with the present reality of constant drug-masked headaches that have yet to be answered, of seemingly weekly bouts of vomiting and ER visits, and of all the fun things that go hand in hand with this stuff. Please keep my wife in your thoughts as her load to carry has multiplied by ten (twenty? thirty? maybe more?). Otherwise thank you so so much for your love, prayer, and concern.

peace.

 

* Vancouver, Washington. No, not Vancouver, British Columbia. No, not Washington DC. Vancouver, Washington in the county of Clark. Clark County Washington not Clark County, Nevada where Las Vegas resides. Ugh We’re the original of all three and yet we own none of them. Thus is the life of living in the original ‘Couve

** For a guy who technically has brain cancer it sure is strange to never have any cancer, tumors, aneurisms, or anything of that nature in my actual brain!

Stability isn’t Such a Bad Thing: New MRI Results

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No news is good news right? Or should I say, no bad news is good news right? Or maybe I should just say that it could always be worse right? Oh, I don’t know. The point is that we got our most recent MRI test results back and there’s been absolutely no change in my spine regarding tumor growth (or any kind of growth for that matter).

In my mind this is something definitely worth celebrating considering we’ve had a string of scans come back with new friends attached (think new tumors). There were times in the past where good results (or even neutral ones like yesterday’s) were actually difficult to deal with  because they felt incongruent with how my body itself felt. My body felt terrible and I was experiencing new symptoms and yet the scans did not support what my body was saying. The same reality could have been or could be true right now. As my previous blog post touched on I’ve been in the ER more in the last month and a half than I have during the entirety of my whole cancer career. Additionally I’ve been having headache “episodes” every day that aren’t strong enough to send me to the hospital but cause dizziness and all that annoying jazz. And yet the news of a stable MRI didn’t leave me feeling that sense of incongruence or confusion as it had in the past (which really is all about triggering that feeling of a loss of control).

Anyway!!! Anyway, there was/is a strong sense of relief to know that things are stable. There’s a strong sense of relief in having a new plan of attack to eliminate my headache problems (my oncologist has been putting in lots of time, energy, and creativity in trying to figure this out). There’s a strong sense of relief in knowing that hand controls for our vehicle might be a reality. There’s a strong sense of relief that October 12th* isn’t all too far away. There’s a strong sense of relief to know that at least for now I am stable…and stable isn’t such a bad place to be.

 

* October 11th (10/11/2012) is exactly six months from the date that they gave me 3-6 months to live!

The Challenge of Self-Care

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I hate disruption. Or, I should clarify that I hate being the cause of disruption. As a person my goal is to generally fly under the radar and only be noticed or cause issues when I’m intentionally choosing to do so. Otherwise I want things to be smooth, easy, and chill. Peace. I want things to be peaceful. And to be perfectly honest, most of what triggers that feeling of unrest is more within myself and has to do with small menial things than anything else. Its the little stuff. I don’t want to be that guy who has an opinion about dinner that causes everyone else to have to change their opinions. I go with the flow. Even when I’m all alone I still function in this way. I don’t even want to put myself out! I don’t even want to hassle myself with annoying tasks that cause irritation or extra “pointless” work. And so brushing my teeth is annoying to me. I remember as a child being overwhelmed with the thought of having to brush my teeth multiple times a day…forever. Forever!There’s no end to it! You never finish, you never get to check the ‘toothbrushing box’ and say you’re done! Ugh. I could go on and on about these types of things, but that’s not really the point.

Today I find myself living in an alternative reality where tooth brushing is the absolute last of my worries. My morning routine has grown so huge that I have deemed it worthwhile to share with you. The point here isn’t to complain because it’s very likely that it’s normal for many of you to take this long to get ready–for me, however, it feels like a trap. For me I can feel  my family staring at me and thinking: “oh my goodness, daddy is holding up our entire life with this long morning routine of his. I wish he’d stop doing some of it; I wish he’d hurry up!” For myself, this goes against my naturally identity and is requiring great internal adjustments. As a nine on the enneagram (to learn more about the enneagram this is a good website: http://www.enneagraminstitute.com/) this new morning routine is inviting me into a different reality, one marked by self-care beyond what I normally allow. So this blog, in reality, is not about complaints, it’s not even about the added stress of more work. No, this blog is about me learning self-care.

Let me go ahead and skip what happens in the AM prior to getting ready for the day ’cause I often wake up excessively early and read, post on Facebook, write, or mess around on my phone. That stuff doesn’t really count all that much into what I’m generally commenting on this morning. I also will not include what I do for others (make breakfast, etc.) ’cause what I want to capture is this new challenge of self-care. So here’s my new morning routine…

  1. Take my large pile of pills with food (implication: eat my own breakfast before everyone else eats theirs)
  2. Pick out my clothes and grab all necessary items for the day (toiletries, backpack, books, etc.) to bring downstairs where I’ll shower and attempt to stay for the entire day. The goal is to not have to return to the third-story until bedtime due to the dangerous stairs and my inability to traverse them effectively anymore
  3. Invite someone to watch or spot me going down the stairs (it’s fun being a constant trip hazard!) for safety sake
  4. Go to the bathroom (yes, this is more of a task than it used to be) and if/when it doesn’t work…catheterize
  5. Prior to showering make sure everything is within proper reach (towels, clothes, etc.) because once I sit down on my old man showering seat getting very far can be a dangerous exercise for a wet and slippery trip hazard like myself
  6. Without going into detail (you’re welcome) showering while sitting takes quite a bit longer than a normal showering process–as does toweling off. There is a necessary order to how things must happen so that I end up clean and all that jazz. (enough said? I thought so)
  7. Now clean, dry, and still seated I have to apply some more medicines on my feet and other places (enough said? I thought so)
  8. Also, due to those glorious and always present prescription-caused side affects it’s now time to lotion up. For a few minutes I cover elbows, legs, etc. in a layer of lotion. Virtually my entire body needs a little sumthin’ sumthin’.  I used to avoid this step until my elbows and knees started to fall off (that’s not a joke. I’m pretty sure they almost did). I literally turn into a crispy cracker if I don’t lotion up (literally.)
  9. Still seated it’s time to get on socks (especially important in order to protect the medicine on my feet) and shorts. The shirt will wait as long as humanly possible because otherwise I’ll have to change it before heading out in the morning. The morning routine of what I’m describing, making and eating breakfast with the fam, and getting the kids ready to go (Jess does the bulk of everything in/for this family, but I give what I can and it varies depending on the day) will leave me literally dripping and pouring sweat.
  10. After getting half dressed (I should mention that even getting on socks, underwear, and anything involving my legs has become quite the challenge as my leg has stopped working) I finally stand up so that I can look in the mirror and tell myself that I’m worth it
  11. Now comes the regular stuff: deodorant, brushing of teeth, doing hair, etc. Nothing new here.

There are those other routine things like the morning cup o’ coffee, checking the weather, letting the dog out–but those are all optional or chore-ish items. I don’t consider those forced self-care. There is also the matter of what I’ve got to do just to go to bed at night. Oh, and then there’s the implications for my wife, what this requires of her, and how this has changed her routines! Maybe this list feels somewhat normal to you in its length, but for myself it has forced me into some self-work that I’ve spent much of my adult life avoiding. As a person who abhors what feels like meaningless self-care items, this all feels like torture. I don’t want to worry about myself like this. It’s annoying and worthless I tell ya! And yet I am learning how incredibly important it truly is. All of this has been quite a journey for sure because my old morning routine list was probably four bullet points long: urinate (successfully), shower, get dressed, and the (11.) usual items. Oh how things have changed.

For some of you this blog might be annoying because self-care is not only easily accessed, but it’s the actual filter through which you view your world. For some of you self-care is easy, it’s not a challenge. For some of you, you look at the little list I drew up and you’re irritated that I find it something worth commenting on because it describes your daily routine for much of your life. I do, however, think that there is a common ground that we can find together in all of this. All of us are constantly being invited into change. There’s not a single one of us that is not somehow or somewhere in our lives being invited into a transformative journey of change, struggle, and movement. For myself it is coming in the form of seemingly menial tasks such as brushing teeth (among other things right?). For you…well…I guess that’s a question that I’m not going to try to answer! What is it that you’re being invited into right now? What does your self-work look like today, tomorrow, and in your extended future? Unlike me you may not be forced into your work, but instead are being gently invited into it. Are you ready, willing, and open to jumping in? Dipping your toe in the water? Diving head first?