Category Archives: Update

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.

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 Fourth Act

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I’m totally over this whole cancer thing. I mean, seriously–it’s so 2011 ya know? I miss seeing my downtown crew, the group of people that never make it into a schedule because you happen to run into them whenever you’re around town. The problem is that I’m never around town anymore. Things in my body have changed so drastically over the last few days, weeks, and months that my presence in my downtown neighborhoods has dwindled to nothing…and it’s killing me (not literally folks…at least I don’t think so!). I absolutely hate it for more than just a few reasons. But…it’s just a part of the story that I can’t seem to get away from these days.

Speaking of an inescapable story, let me quickly give you a summary as to where my body is right now. Headaches have become normal. We don’t know what is causing them, but I tend to wake up with a throbbing type of headache that comes and goes throughout the day. It’s manageable, it’s not debilitating, but it’s there.* Then there are those times where the headaches get out of control. They (the out of control ones) seem to come about every 1.5 to 2 weeks and they always draw me back to the ER (they always seem to happen on the weekends too!). The problem is that when the headaches get too bad they induce vomiting which keeps me from being able to effectively manage the pain on my own. Anyway, so weekend trips to the hospital have sadly become routine around here as have the debilitating headaches. Not the routine we’ve been hoping for!

Simultaneously my ability to walk is getting worse and worse as my right leg has become less functional. This has a greater impact than I can write about here; it deserves a whole blog unto itself. Living in a three story house and being a guy who hates to sit still in his own home this has caused not only great identity crisis but also is creating more physical pain as I refuse to slow down my life in accordance to what my body is telling me I’m able to do. My body is screaming at me to slow down, but my heart/mind/spirit/arrogance is refusing. So what ends up happening is that I crash at different moments into a puddle of exhaustion and my wife is left picking up the pieces.** Showering is exhausting, tucking my kids into bed wears me out, standing while doing the dishes leaves me sweating, essentially anything that defines home life wears me out and leaves me huffing and puffing. Sadly, my favorite pastime: reading, is a freedom that I don’t have as much anymore due to my medically induced narcolepsy! Anytime I sit down to read I end up falling asleep! it drives me absolutely crazy and is one more thing that I can no longer do!

Anyway, this blog was not intended to be a whining blog…though I think whining occasionally is perfectly OK. My intention, however, was to say some of that simply because I want you all to know where I am at right now. MRI results will be in this week and we’ll find out if the headaches are due to tumor growth or something else. The results will give us one more small piece to the puzzle, but as I think I’ve shared before, MRI results only mean so much. We’ve come to rely less on these results because they can be so fleeting in their significance. Due to the volatile state of my type of tumor, what a scan says today could be completely opposite of what it says in four weeks! Regardless, I’ve said enough concerning where things are at. Due to some of the above factors (and a few others I haven’t written about here) my life is once again filled with sick moments, regular doctors visits, and now new visits with specialists of all sorts and sizes. Or, in other words, my life has not created enough time for me to be with you or to have quality time with my wife as I would prefer.

My fear and greatest burden right now is missing out. I’m missing out on all the fun. I’m missing out ’cause I’m just too tired to participate fully. I’m missing out ’cause I’m codependent with transportation. I’m missing out ’cause I don’t have time due to all my doctor’s appointments. I’m missing out ’cause I’m sick as a dog. I’m missing out and I don’t like it. But it is, weather I like it or not, a part of my story right now. It just is. It’s that part in the middle of the movie that’s not very good, the part that you endure ’cause you’re hoping (assuming?) that it is building up to some kind of more interesting and fun-to-watch part of the movie that should be following it. It’s not a lull but a building crescendo right? Please tell me I’m crescendo-ing right now ’cause otherwise this is just plain ol’ boring and I’m kind of done with this scene.

If Act One of my movie was all about discovery and initial recovery; Act Two was about trying to figure out what life looks like as the cancer boy; Act Three was the lull of digression (what this blog has been about); at some point Act Four must begin and it should be an act marked by life giving activity, by healing, by community, and by refreshment. Right? What will act four be?

The hope, then, is that this movie is shelved in the feelgood section and not in the drama or tragedy section of the stockroom. Right?

How about this: Lets just go out there and make a good movie okay?

 

* I know there’s lots of good ideas for what to do to get rid of these or to manage these–so please know that we are and have been exploring options. I appreciate your concern and your creativity in sharing different ways of treating this stuff, but I really do have an amazing support structure around me that is always pursuing new ideas and options. So don’t worry!

 

** Another whole blog needs to be written about my wife’s role in all of this! Shesh, I’m not sure who has it worse to be honest. She does so much and receives so little praise or recognition for what she’s constantly having to give up. She is amazing-a thousand times over amazing- and she makes so much of my life possible through her hard work and constant sacrifice.

 

Musings on being a bad inspector…and a quick update

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This is the third time it’s happened in a little over a month. Every two weeks seems to be the rate. In literally an instant* I can go from feeling great to being admitted to the ER. Each time I’ve ended up in the ER it’s happened because my body has turned on me in about one to two hours. I’ll go from having lots of energy (please don’t forget it’s all relative!) and feeling really well to having an unmanageable debilitating headache, vomiting, and all those fun aches that go along with feeling sick. And strangely enough it only happens on the weekend where our only recourse is the dreaded hospital! Fun times. (fun times especially when a weekend ER visit usually necessitates canceling our Sunday community meal. Boo)

It’s the same routine every time we go there too. They very quickly get me my own room in the back so as to protect me and my low immune system from all the germs/bacteria/etc. Then we wait and wait for the specialized people to come and “access my port” or in other words to get my IV hooked up to my chest. This usually takes longer than it should, upwards of an hour most nights. Once the port is accessed they get me lots of fluids, anti-nausea meds, and begin the pain killer dance. Eventually they get me a CT scan, have me cath so they can test for a UTI, and then try to kick me out before my headache is gone.

In the end there’s never a legit reason as to why I get so sick so quickly. Is it from all the different meds I’m on? Maybe. Dehydration? Probably. Jacked up nerves? Always. Tense muscles? Most likely. UTI? At times. Flu? Maybe. In the end I go home and at times feel completely better by the very next day. Other times it takes days to recover.

Jesus once cautioned us to “[not] worry about tomorrow for tomorrow will worry about itself. Each day has enough trouble of its own.” I like and hate that. It’s a statement that’s more true than I’d ever want to believe; it’s a statement that used to sound comforting but today feels more dangerous than anything else. It feels dangerous because I’m seeing how true it really is, no matter what happens today I have absolutely no idea what tomorrow may bring. The fact that it worries me more than brings me comfort shows the reality of where I’m at right now emotionally and physically–because those words warn me that no matter how good I feel today tomorrow may bring incredible sickness! In my more optimistic moments (not to invalidate either side-the optimistic one and the pessimistic both have a place in the grief process!) this might bring more encouragement because it helps me remember that no matter how bad I feel today tomorrow could be better.

Regardless, here I sit. Sitting in that tension. Luckily I sit with an amazing supporting cast of my wife and kids. Jess has never left my side in all of this and continues to be an overwhelmingly beautiful support in all of this. If it weren’t for her do you realize how confused I’d be? I’d be like Inspector Gadget without the cool gadgets. I’d just be a bad inspector.

 

* I’m using the phrase “literally an instant” more metaphorically for “really quick”

Video Blog: Moving Day

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(lets try this again. I just posted this video blog and it was…well it was kind of blank…my apologies)

Well my leg just ain’t working very well anymore so we’ve decided that it’s finally time to move my bedroom downstairs. So all you kids that have enjoyed that playroom…sorry! It’s not a full move (yet) because the thought of mom and dad sleeping downstairs away from the kids is pretty terrifying for India and Jones. So for now the hope is that I will only have to go up those stairs once a night to tuck my kids in and go to bed myself. Eventually the hope will be to fully move to the main floor, but for now it’ll come in transitions.

We are also giving each of the kids their own “special” rooms as they have been sharing for their entire lives.

Lots of change

And Falcor. (that’s why you’ve got to watch the video blog)

Enjoy