Category Archives: Cancer

The Official Update and Report

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From the very beginning of our recent medical journey everything has (in strange ways) changed and moved so quickly. From my original symptom of noticing my ‘drop foot’ while walking downtown, to discovering the results of the MRI, to developing additional symptoms, having the actual surgery, and now the daily recovery process every single moment has changed and morphed reality as we are experiencing it.

So let me do my best to update you with where things are and where they are progressing. The best way I can do this is to first give a quick run down of links to the former stories that might help to contextualize:

Surgery was on Tuesday and I spent that night and the entire next day in ICU for recovery. While I went into surgery with pain, swelling, and some major numbness in my chest, back, and abdomen (the symptoms morphed incredibly over the 10 days leading into the surgery) I came out of the surgery with partial paralysis from my abdomen down through my right leg. My left leg came out of surgery with numbness but in pretty good functioning order and I clearly had back pains and issues due to the surgery itself.

While in ICU I was virtually immobile. I had to have help moving my body in bed, repositioning it for sleep, comfort, etc. Essentially I was pretty helpless–though honestly in great spirits. My great spirits were due to the fact that from the very get go my body was recovering amazingly from the surgery. My breathing, eating, pain level, back scar, and any other general vitals were consistently and shockingly ahead of schedule…to the point that instead of eating ice chips I was consuming Pad Thai in the ICU (thank you friends!).

It was not until Wednesday evening that they finally moved us into the 7th floor suite where we would stay until Friday. It was frustrating to stay in the ICU so long because my children were not allowed into that space, and due to the timing of when they moved me I was not able to see my kids after the surgery until Thursday morning! Being on the 7th floor was wonderful, it was a giant bright room, we set up shop with flowers and notes and all that jazz, and it became home ’till Friday.

If on Wednesday I was helpless and completely immobile due to paralysis and back pain, on Thursday I was free as a bird! Ok…I felt free as a bird…so at one point on Thursday with a walker, a physical therapist holding onto a belt around my waist, and my wife gliding next to me I was able to “walk” from my bedside to the hall way. Singing “Golden Ticket” and channeling my inner Grandpa Joe I walked. It was exciting and I was riding pretty high considering the fact that the day before I was completely immobile. At this point though I still couldn’t get into and out of bed without someone hoisting my leg for me. I was still relatively helpless and motionless, but to know that with help my body was able to do stuff was exhilarating…and so close to the surgery too! So on Thursday I learned that with help I could drag around my dead leg.

On Friday they moved me into the rehab clinic at the hospital. Honestly it was kind of a hard emotional move because not only was it a downgrade in rooms (that 7th floor is posh!) but it meant that I was no longer an invalid, I was no longer a hospital patient–I was in rehab. No IV drugs, no hospital gown, and no on demand movies. But what a move it was! I was wheeled into my new room at 2pm on Friday and by 4pm on Friday I had done about 1.5 hours of both occupational therapy and physical therapy!

Nothing has changed in my right side. My brain doesn’t really know where my right leg is, if I were to close my eyes and attempt to do leg lifts I couldn’t tell you if i were succeeding, I have to be cautious about hurting or burning my leg because I don’t realize its getting smashed or scratched (in my first ‘walking’ attempt Jess had to tell me I was physically standing onto of my right foot!) At the same time, and this is where it gets incredibly difficult to articulate the tactile sensation in my right leg is off the charts. If you bump into my leg wrong I get shots of electricity shooting into my body or if you rub your fingers down my leg I feel as though your stabbing me with needles. It’s a strange blend of hypersensitivity and paralysis that I just don’t get. All of those symptoms have been consistent since surgery without any change–but here’s the amazing thing: my nerves and my muscles are remembering how to do things! I don’t know where my leg is, but with each attempt and exercise my body is remembering where to put my leg so I can walk, lift it, and move it in a functional way. It comes in really small ways, but each day its coming a bit more. Today I walked up stairs with one hand rail. Today I walked around with one crutch all day (awkwardly, but successfully). I maneuver in and out of bed easily now that I have a growing ability to “flop” my leg more successfully into correct places. Each day I am gaining skills that are getting me home–today I shaved. Ok, I know that doesn’t sound like much, but at six feet four inches tall that sink is pretty low and I have to learn how to balance at a sink, be able to reach over and turn water on and off, I have to have everything in certain accesible ways, etc. in ordre to set myself up for success and not fall over due to my right side. Its fascinating and humbling all at once…but my body is getting it. I could go on and on about little details like this (getting on shoes and socks can be quite a challenge!) but the exciting thing is that while my paralysis hasn’t changed (yet) my muscles and my nerves and learning constantly every single day and every single day is bringing more and more success.

At this stage in therapy I still must be attended to at all times (if I dare try moving without supervision boy do I get in trouble), I am still on major pain meds, I am still hopped up on steroids, and we’re still daily trying to see which muscles can function. My body is freakish and grotesque feeling as things are still swollen and distended in places, as my blood thinner shots give me funky rashes every time, as the steroids create marks and spotting, I still wear grandma socks to keep blood clots from forming in my legs, and as I’ve still got random bruising and sores from the needles that monitored all the nerves in my body during surgery. But lets be honest, now that I don’t have a catheter bag strapped to my leg…i’m looking pretty good!

Tuesday is a HUGE…HUGE day, so please know these things that lie ahead of us and be praying with all you’ve got:

  • Jess and I with all the support staff here will determine when I get to go home
  • Jones and Jessica will be meeting at 10am with a surgeon in Portland to discuss his lymph nodes
  • My pathology reports are potentially available (between June 7th-10th)

Grace and peace to you all who were able to read this long update. What an adventure and what a blessing to be able to go through this with all of you by our side.

 

Why YOU are Killing Me

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In the 4West rehab unit here in the MoJo wing at Southwest Washington Medical Center Sunday’s are our day off. No scheduled therapy sessions on Sunday, its the chill day. Its the day of rest.

Or is it?

By the end of today I was beat, I was beat to a pulp and tired and exhausted and…tired. Did I mention how tired I was? So I didn’t do any formal physical therapy today but I was blessed to live into the world that I love. My good friend Kevin brought Stumptown coffee at nine this morning and we an amazing morning together…and from that point on each hour brought a new friend (or two or three or six) to spend time with. Ranging from our downtown crew, to my children, to old family friends we were blessed with love from nine to nine today. Near the end of it I crawled (or was hoisted) into bed and told our friends that I might just sleep while they all talked…but I couldn’t stop! I can’t stop talking to any of you (that’s what I’m doing right now at 3am isn’t?!) because it’s what I love! I love you all, I love talking with you, I love hearing your stories and making you hear mine!

Much of the conversation today was directed toward the simple fact that I’ve decided that it is literally completely impossible to go through the process of rehab and recovery with negativity if you are surrounded and supported as we are and have been.* You all are changing everything because you have been so present physically, emotionally, spiritually, and any other -ally that might arise. How can I not feel hopeful about my bodies future with so much support and encouragement around me? So while I’m beat from talking so much on my “day off” I wouldn’t have it any other way. Thank you to each and every person who has visited, who has called, who has emailed, who has texted, who has facebooked, who has stalked the blog, who has messaged my parents, who waited in the waiting room, who prayed over us the night before, who stopped by the house leading up to the surgery, and those who are praying and waiting eagerly to jump in once we talk to a surgeon on Tuesday (the 7th) concerning Jones’ lymphs. You are all a part of this and I loved spending twelve hours today with a collection of you. You wear me out…but based on Jurgen’s face when he left tonight I’m pretty sure my catheter stories kind of wear you out too.

Love and peace to you all.

 

* As I type this I realize some of the foolishness of my statement. If my body were regressing right now, if I were getting infections or other major set backs I realize that things would be different…and this genuine realization is kind of sobering actually ’cause it it shows how much more valuable this emotional and spiritual support is especially if/when the setbacks come!

Such a Trip…Seriously

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I can’t think of any other phrase except to say “what a trip”!

Even just a few weeks ago I had never pictured myself as a rehab patient (I probably should have…but I didn’t). I know my story is nothing at all like the movie Regarding Henry but it is exactly what I felt like yesterday as I spent my first day in the rehab unit here at the hospital. You know those two bars that rehab patients hold onto as they learn to walk for the first time again…that’s me! What the what? You know those teams of encouraging PT’s and OT’s who are saying nice things, giving them pointers, saying “come on Ryan, one more step…” that’s me! I’m Harrison Ford from the movie! (except that I wasn’t a jerk before hand…and I can talk and read…and…yeah…you get it). It’s just such a trip to realize that I am actually, genuinely, completely learning how to walk again.

I know this post has not been an epic one of powerful words, well written thoughts, or even a cohesive news update…but if you haven’t picked up on it yet, I’m just now coming to grips with the fact that my new (as of right now) reality in life is that I’m a baby learning to walk. Who’d a thought? A few weeks ago I was in pain…but I was walking down Main Street in Disneyland! Shoot, a few days ago I was anticipating surgery and in bad pain, but in 48 hours of time I managed to get down to the pub and even plant some spinach in my garden. Now? Now, I’m giddy to have a strap on pee bag so that I don’t get tangled when I try to use my walker. What. A. Trip.

And yet…my body is doing well. I’m moving more than I should. My pain is less than it should be. I’m full of confidence and energy. I’m in what appears to be an amazing facility. I’m still crying constantly about the support of my friends and family (…yep…just cried again while typing this…), and I can gladly call this home for at least the next 7-10 days.

Here we go!

 

(Just as an FYI that need some more of the details…we’re waiting for positive pathology reports to show up between June 7-10. Once we get those reports we’ll be able to have a more firm understanding of what to do concerning the left over tumor ‘fingers’ intertwined in my spinal cord. Right now the spinal damage being shown includes lack of bowl/bladder function and pretty strong paralysis down my right side from my belly button to my shin…more or less. There are other spots of numbness, tingling, etc. as well but these are the major concerns)