Keep trying to type a blog and I keep ending up with this:
a;sld dnvk IKd rfdrmkm,d dk dw,
And it’s just not very good readin’….so here’s the best I could do ya for. Enjoy!
Keep trying to type a blog and I keep ending up with this:
a;sld dnvk IKd rfdrmkm,d dk dw,
And it’s just not very good readin’….so here’s the best I could do ya for. Enjoy!
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.
We’ve been talking about this for quite some time and, well, the movie is finally finished! It’s an exciting moment for my family and I as we are able to share a piece of our story, a piece of our journey with you. All along the way whether it was through this blog, through our speaking engagements, over cups of excellent Vancouver coffee, or in some other format we have made every attempt to share our story with you because we believe that something spectacular is happening. Despite the pain and misery of it all, despite the reality of whether I live or die, despite all these things we have made the conscious choice to be foolish enough to believe that a beautiful story is and can be told in this mess. And if I were to be perfectly honest, this beautiful story has become more and more difficult to own as it has become more and more painful to live out. (as a side note, to follow the story as it has unfolded you can see those blogs here) The more the pain has grown the less accessible the story has been to share with the general public. Regardless, thanks to the creative’s over at Soul Pancake our story is now being told in its most well done version. Oh the irony!
So please watch this (irony and all), pass this on to anyone and everyone you know. The goal is for this video to go viral not for its own sake but for the sake of the greater story being told: that there is life in death! That death is not the end! That there are more stories out there that need must be told! So share, re-post, blog about it, facebook it, tweet it, email it, do what it is you do with youtube videos and spread the word! Who knows? Maybe…just maybe…we can get something goin’ here! Maybe…just maybe…we can together start some kind of movement–one of love, of sharing, and of life.
peace.
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!
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!