Category Archives: Ryan’s mind

Real Life is Hard: Missing the Hospital

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While I was showering today I started thinking about the things that I really miss from when I was first sick nearly a year ago.

 

  • I miss the excitement–going in for surgery, staying in ICU, managing pain med cocktails, learning to walk, having visitors…it was all so exciting early on. At the time there was little expectation that I would be diagnosed with terminal cancer (at least little expectation within my own mind!) so all these things were fun and interesting. They were all experiences that I, as someone who had never stayed in a hospital before, found interesting and exciting. (kind of weird, I know) Now, these days, everything is routine. The only exciting medical stuff is when we get MRI results back, when we get to wait and see how sick I get from my chemo meds, or when we get to see how constipated I get as I up my vicodin. It’s just not the same.*
  • I miss the Jello–Seriously, while hospital food isn’t the best, there was something fun about being waited on for every single meal. Not to mention that it wasn’t until the last four days of my stay in the hospital that I learned that I could literally choose and request anything I wanted for a meal! Literally, if they could make it I could order it. From milk shakes to blue cheese burgers I could order it…if only I had found this out on day one! Even better than the hospital food was the killer treats that you wonderful friends and family brought in to me. From thai food to a Wendy’s frosty it was great to eat so well. The thing is, is that I can (and often do) eat that well today…but it’s not the same. There’s something less exciting about it. Again, it’s just all so routine now.
  • I miss the simplicity–Everything was simple early on. I had one job: recover. Everything revolved around that. Even Jess’ jobs were simplified in many ways, though she definitely had more than one. Today one of the hardest things is figuring out how to function. How much do I work? How much time do I spend with friends? Following ten days of being sick who deserves my time most? I’ve been at home for those ten days, but by no means has it been quality time with my wife and kids. So do I follow up those ten days with a series of quality days? Do I catch up on my lost time outside the house? What about my “responsibilities”? Which responsibilities still apply when you may or may not be dying of cancer? I could/should write a huge blog about this one bullet point. I miss the simplicity ’cause right now I’ve got little to no idea how to manage my time, my energy, and my activity.
  • I miss the pain meds–It’s not so much that I don’t have access to pain medication right now, rather there was just something nice about having someone else in charge of it. It’s such a hassle trying to remember all my medicines, vitamins, supplements, etc. I liked when nice caring people would come in the room at the right times to give me the right stuff and to occasionally talk me into taking more or less of different things. It was nice. It was easy.
  • I miss the reading–It kills me that today I have lots of time to read but generally lack the mind-clarity to be able to do it. Due to “chemo brain” (as my doctor calls it) very often when I try to read one of the books in my long queue I just can’t focus nor can digest what I’m reading. It’s frustrating. When I was in the hospital (after the first couple of days) and when I first came home my brain was not the problem as much as my body was so I was able to read more…I miss that.
  • I miss the bed–Come on, who doesn’t want a bed that sits up?! The rails were nice too ’cause they keep my stuff (books and laptop) from falling off. Oh, and don’t even get me started on its ability to go up and down. For a dude that can barely get to his feet to put on his socks it’s nice to have an adjustable bed! The only thing I do not miss about those beds is that the mattress would constantly move in order to ‘protect’ me from bed sores and such. No, I do not miss that part.
  • I miss the visitors–For a social dude like myself it was pretty flippin’ awesome to have people visit every day. Don’t get me wrong, with where life has taken us and with how tired we are there’s not a chance we could emotionally and practically handle visitors like that today. But still, I miss that back then it was not only a reality but a semi-manageable one!
  • I miss the lightness–Let me say upfront that I should have been more worried and less lighthearted early on. But even still, I miss the fact that back then I could get excited about small things like learning to pee again or transitioning from a walker to a crutch. Those small hurdles were worthy of being celebrated…but today there’s few things like that to celebrate. Life is just life. And even more so with the development of my cancer everything is seen from a different perspective…a much more sober perspective.

There are definitely things that I don’t miss. When I was in the hospital I didn’t get to see my children enough. I don’t miss having a catheter. I don’t miss smelling (I didn’t get to shower as much as I should!). I don’t miss having a bag of my own urine strapped to my leg. I don’t miss the blood thinning shots. I don’t miss having my blood drawn every morning at 4:30. I don’t miss being prodded in random awkward places. There are many things I don’t miss and given the chance I wouldn’t go back. But being honest, being completely honest, the bullet points above are things that I’ve probably romanticized…and I’ve probably romanticized about them because real life is just so hard. Hospital life isn’t real life. It’s not. It’s an alternative world that costs lots of money to create. Real life is gritty, real life causes immense clashes of balancing worlds, real life requires more of you, real life invites harder choices, real life is just more difficult.

Real life is also more rewarding and its worth it and I wouldn’t trade it for anything…

 

*  Jess would like to clarify that SHE would never use the word “excitement” with regard to her husband going in for back surgery and tumor removal. Maybe I should clarify that I use the word “excitement” quite loosely!

What Sick People Don't Tell You: Constipation, Sex, Time, Dignity, Normalcy…

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Lots of people are sick, lots of people have cancer, lots of people have had major surgeries…but there are certain things sick people don’t seem to talk about. This blog post might be awkward, it might not be appropriate for kids (do kids read my blog?), though it should be safe for work. The reality is that some of the crap that comes with sickness is embarrassing and awkward and (potentially) inappropriate for virtual online conversation…so lets jump in!

Constipation— Do you realize that virtually every medicine has a side effect of constipation. Vicodin, blood thinners, chemo, anti-nausea meds, they all have side effects that include constipation. Did you know that if you’re constipated for too long it’ll actually make you have incredibly terrible flu-like symptoms? Apparently having rotting crap in your body isn’t good for your body at all. Anyway, this is a constant battle, one that can make a huge difference on a day to day basis on how I feel and how I’m functioning. But who wants to talk about poop? I do.

Time consumption— I’m in a sweet spot right now where I don’t have doctor’s appointments every five minutes. But in general since I’ve been out of the hospital I’ve had 3-10 doctor’s appointments a week. Between meeting with the brain surgeon, my oncologist, the radiologist, my general practitioner, getting my blood thickness checked, acupuncture, nauropathic stuff, the times I had daily radiation, reki, physical therapy, MRI scans, CT scans, X-Ray’s, occupational therapy, massage therapy…turns out my disability isn’t from cancer but from the sheer time commitment associated with fighting it!

Loss of dignity–Oh how this was quickly beat out of me. First off, they don’t tell you prior to surgery that aside from your ears they will literally stick a tube in every single hole in your body. No exceptions. Secondly, after you’ve had a catheter ripped out (and put back in and then ripped out and then put back in and ripped out again) by the same nurse that you played cards with that night you come to a place where you don’t care much about your body and its former standards of privacy. Once you’ve had people help you shower and go to the bathroom, once you’ve sported diapers in public, or been given a tool to help you wipe…you’ve essentially crossed that threshold that says “I just don’t care anymore”. I imagine this is much of the struggle of the elderly as they have to give up so much of their dignity that they’ve probably spent much of their life holding tightly onto.

Body changes— If only you could see me naked. I’ve never been the best looking dude, always on the awkwardly scrawny side, but I’m a little creepy looking now. No seriously. A giant scar on my back, massive stretch marks across my stomach and sides, random tattooed dots (used for my radiation treatments) on my chest and sides, rashes, acne, nasty sweats (as my body expels toxins), less hair in the right spots and more hair in the wrong spots…gotta love my new look!

Sex— There was scene in the movie 50/50 (please watch it) that brought me to tears (ok, there were many parts that brought me to tears). Awkwardly, it was the sex scene.* In the movie the friend of the 28 year old guy that gets brain cancer tries to hook him up with a girl so he can have sex (thinking it’ll make him feel better) but in the end the guy is in too much pain to even enjoy something as pleasurable as that and has to stop half way through. I haven’t heard many sick people talk about sex. Not only is there an emotional piece that is lacking (when you’re sad about dying sex isn’t often on the forefront of your mind), and not only is there they physical piece that your back hurts to bad to even engage fully, but there’s also the physiological piece. Many drug side effects can affect a dude’s testosterone levels in incredible ways. So emotionally you’re often not up to it, physically you hurt to bad to engage in it, and sexually you’ve lost much of the drive to pursue it. People don’t talk about sex and cancer much…but it’s a big deal and it’s a big loss, and it should be talked about more. Trust me.

Desire for normalcy— I’ve never want to be normal much. Normal seems boring. But after being sick and being ‘abnormal’ for reasons out of my control there is a strange drive for normalcy. Even though (as I’ve written about) normalcy is both a myth and an illusion it has become a major attraction. I crave it. I want it. Even if I don’t know what exactly it is I desire it. Maybe sick folk talk about this but if they do I think people feel a compulsion to correct them: “Normal is boring! Don’t be normal! What is normal?!” Whether it makes logical sense or not there is a strong compulsion for normalcy: to be able to have ‘normal’ sex, to be in control of what my body looks like, to choose who gets to see me naked, to have a schedule filled with things I want them to be filled with, and to have a regular pooping schedule! Those are just a few of the ‘normal’ things I crave.

This whole journey has been such a trip. So many unexpected feelings (I didn’t even talk about that element!), so many surprising realities, so many experiences that I never thought I’d be invited into. We’ve got no idea what lies ahead of us though it is so comforting to look behind us and see how an amazing supporting cast has carried us through this far. On our own we’d be a crumpled up mess, but with the supporting cast of all of you and with the story God’s inviting us to experience in Him we may still at times be a crumpled up mess but at least it’s a crumpled up mess that God is fashioning into a piece of art.

 

* Let me just say that I hate and avoid sex scenes in movies. I don’t care if it’s artistic, if it plays an important part in the movie, or whatever. I just don’t like watching people have sex. Sorry, as one of the ultimate expressions of love it’s just not something that I want to watch other people engage in even if it’s actors in a movie. It’s too special and too intimate to tarnish by watching other people engage in it…with that said, there’s apparently an exception to ever rule.

Tell me no

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Not many people say no to me. It’s not because I’m particularly persuasive. It’s not because I’m hard to say no to. It’s actually because I spend a lot of my time and energy saying no for you before you ever need to say it. I’ll rarely ask you something if I don’t think it’ll be a positive response. Or I’ll only ask about things where I don’t care much about a positive or negative response. Both are tools to protect myself from being disappointed or from looking stupid (I’m not saying I do, but it’s how I feel).

I’m trying to recover from both.

So go ahead. Say “no” to me. I dare you. Go ahead, dare me to ask you something regardless of the outcome.

You know what it all comes down to right? It’s all about control. We all seek control in different ways. My way to control my environment is to either take a posture of not caring or to only enter into scenarios where a certain outcome is likely. It’s about control.

It’s a valuable, I think, to ask ourselves how we’re attempting to control our world–and thus to ask ourselves what fears or obsessions are in fact controlling us. Maybe then we’ll I’ll experience greater freedom.

The "Can't Miss List"

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As a followup to my previous post, this is my local restaurant “can’t miss list” from number 23. I received lots of Facebook feedback that was incredibly useful in creating this list and I’m always up for more. Some of the places that didn’t make the cut were because I was disinterested or (more likely) I’ve already been there. Some of the places on this list aren’t there because they have particularly good food but because for varying reasons it’s a place that I’d be remis to miss.

The list is a work in progress, but here she is in all her glory (bold means that it’s been accomplished):

“Cant Miss Restaurants”

  1. Muddy’s Coffee House
  2. Extracto Coffee House
  3. Coffee house Five
  4. Food carts in general (specifically: Grilled Cheese Grill)
  5. Salt and Straw
  6. Ruby Jewel ice cream
  7. Pine state biscuits
  8. Roots
  9. Screen door—get the praline bacon!
  10. Jakes Crawfish—
  11. Hubers
  12. Oba—order ceviche and prime rib
  13. Clark Lewis
  14. Delta Café Bar
  15. Pho Van (is there a better Pho?)
  16. Fire on the Mountain
  17. Vita Café
  18. Farrars Bistro
  19. EaT an oyster bar
  20. The Observatory
  21. Dicks kitchen
  22. The Berlin Inn
  23. Salty’s
  24. Beaker and Flask
  25. Tad’s Chicken n Dumplins
  26. Apizza scholls
  27. Beast
  28. Tan Tan
  29. Mi Mero Mole Tacos
  30. Tasty n sons
  31. Park Kitchen
  32. Le Pidgeon
  33. Podnah’s BBQ Pit
  34. Paley’s Place Bistro and Bar
  35. Nud Ludd
  36. Brazil Grill Restaurant
  37. Mothers
  38. Helsers
  39. Veritible quandary
  40. Beatervill café and bar
  41. Jam on Hawthorne
  42. Besaws
  43. Zells
  44. Lompac
  45. Yoko’s–poke roll
  46. Saburo–sushi
  47. Hunans Chinese food
  48. Lemon Grass thai– get salad rolls
  49. Tanuki– Go on “noodle night”
  50. Brakeside
  51. Grant House
  52. Pambiche
  53. Por Que No

I’m hungry.

My Bucket List: 30 Things To Work Toward

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I freaked many people out accidentally when I posted on Facebook about creating a bucket list. Oops. I didn’t think about the fact that you create those things when you’re dying! I had a few friends text me and others silently worry, wondering “Did you get bad news? Did something happen? Are you ok?!” Oops.

I’ve never been a bucket list kind of guy. I like to say that I’m too practical to do bucket lists and new years resolutions though it might be better to say I’m too lazy or too skeptical or too…something more negative. My personality type is so incredibly laid back and go-with-the-flow that creating nail ’em down lists that extend beyond the here and now (I make many lists for what I need to accomplish today or tomorrow) sounds very unappealing. But two things happened in/around me. One is I’ve grown tired of my life being defined by maintenance and fighting cancer and I’m feeling a genuine need to be about more than this (that’s why I pierced my ears). Secondly, as I entered into the new year one of my “Enneagram Thoughts” that I get emailed nightly in order to challenge me as a “9” on the Enneagram (if you’re not familiar with this stuff it’s worth your while! Do the simple test here) suggested that I be willing to step out and actually write down a new years resolution and that I (hold your breath) actually follow through with it with intentionality and purpose!

So, all that is to say that I’ve created a bucket list because I need to work toward some things, I’ve got to be in pursuit of things larger than the now. With a bit of work and some fine tuning I’ve got my first draft down to 30 items. So here she is in all her awkward glory:

Ryan’s Bucket List:

  1. Go to Europe on backpacking trip
  2. Go to Disneyland and stay at Grand California Hotel
  3. Own an iphone
  4. Get a pedicure
  5. Attend World Cup Game
  6. Write and perform poetry
  7. Smoke a Cuban cigar
  8. Get another tattoo
  9. Create a will
  10. Write a book
  11. Pay off school loans
  12. Take Jess to New York City
  13. Get published in a (reputable) magazine
  14. Drive 100 mph in a car
  15. Go on a prayer/silent retreat/go to monastery
  16. Take the family on a mission trip
  17. Be a part of a community garden in my neighborhood
  18. Touch a midget
  19. Go on trip to Seattle and Vancouver BC (and really get to know Seattle more)
  20. Go to Vancouver lake and Frenchmans bar
  21. Dad and kids trip/camping thing (3 trips, one for each and one together)
  22. Have every neighbor on our street over for dinner (or eat in their home)
  23. Eat at every restaurant on my “can’t miss list” (I’ll post this soon)
  24. Give blood (this may take some time but it is possible!)
  25. Go on a Motorhome/camper road trip
  26. Go to lesbian world series softball game
  27. Watch American Film Institutes top 10 movies of all time
  28. Perform Karaoke
  29. Learn to speed read
  30. Learn to Dance