Tag Archives: family

My Wife Just Can't Understand

Posted on by
5

My wife just can’t understand what it’s like to go through what I’m going through. She can’t understand what it’s like to have all the extra hormones that I had to deal with while I was hopped up on steroids for six months. Crying at a moments notice, being moody, irrational, and generally having a different emotional disposition are all things that she just can’t understand.

Try as she may my beautiful wife who is chronically thin has no idea what its like to pour on thirty pounds in just a few months. Even worse, knowing that the extra pounds are not permanent keeps one from justifying purchasing more clothes to cover the new girth. She just absolutely doesn’t get it! She can’t imagine how awkward it is to need to use a rubber band to hold my pants together ’cause the button won’t reach the buttonhole.

She’s never had something foreign growing inside her, sucking her life’s energy and strength to feed its own growth. It’s as if I have a parasite living in my back…but its not a parasite, it’s a tumor. There’s no way she can comprehend the loss of control one feels with something like that being inside of you, one with you, and yet completely foreign. She just can’t get it.

Jess doesn’t know what its like to be nauseous day in and out, for food to not sound good for months at a time, and to be stuck on your back all day every day. She doesn’t understand how boring it is to be on bed rest, to not feel good enough to read, and yet to realize that there truly isn’t anything good to watch on TV. Nope, she doesn’t get it.

I keenly remember when I was at the hospital the transition that happened as I lost any need for privacy. So many doctors and nurses had looked at my body, poked and prodded it, that I lost any sense that there was anything to hide. Jess can’t understand that. She can’t understand what its like to be exposed so many times and so regularly that you forget you might have anything to be ashamed of.

Jess can’t understand how taxing it is to have to go to the doctor all the time, to feel like you’ve got a chain connecting you with your doctor ’cause you aint ever going to get to far from ’em. No way, no how she understands that frustration.

Speaking of frustration!!! She has absolutely no way to understand how annoying it is to have to pee constantly! I swear I’m like an eighty year old man (my apologies to any eighty year old men I just offended)! I pee every five minutes…and there’s no way my wife gets that. She can’t understand what that’s like for sure. And it’s not just pee either, no way she understands what severe constipation feels like. It is a miserable feeling that she just can’t sympathize with.

Thank God I got a vasectomy last year.

One Down, Eleven More To Go

Posted on by
Reply

So that wasn’t too bad. Five days of 340mg of Temodar every night before bed, throw in a cocktail of anti-nausea meds, a little Vicodin, and a few extra naps and it went by pretty quickly (my wife might say otherwise!) The doc says that I’ll probably feel the juice flowing through my body for another five to seven days but it’s nice to know that one treatment’s down with only eleven more to go (and another 4 weeks before I’ve got to take more!).

Tomorrow morning at the delicious time of 6am I’m flying out to Nashville to be a part of a large gathering of Kairos Church Planting participants. It should be an exciting week of hearing stories from around the United States concerning the creativity and innovation that’s happening in starting new faith communities for new people. I feel blessed to call myself a part of this larger national family…now if only I could count on someone to help me shower and take my pills when I get there…anyone? Volunteers?

Seriously though, keep me in your thoughts and prayers that there’s no complications on the plane (blood clotting in my legs from sitting too long would be bad), that the after affects of the chemo don’t keep me down while I’m there, and (most importantly) that my wife survives without me while I’m gone (I’m pretty hard to live without).

Happy Birthday My Love

Posted on by
3

My wife was born twenty-eight years ago yesterday. That was a very good day…for everyone but her mom who had to do the whole birth thing…which is beautiful in retrospect but kind of painful (so I hear) in process.

For the last eleven years and ten months we’ve been a something. For the last eight years and a few months we’ve been even more. For the last seven years we’ve learned how to love each other as we learn to love and lead people. For the last six years and a few months we’ve figured out how to love each other with kids and minivans. For the last nine months we’ve learned how to be partners in leading a movement. For the last five months we’ve discovered a deeper sense of commitment to each other than the previous eleven combine.

All throughout, from when we started dating on Y2K to today she has ever been my friend and partner. She causes me to laugh more than any other person and brings me great joy. But it’s been the last five months that she’s had to give virtually everything…

She’s been a single parent, caring for our two high-energy, amazing kids virtually on her own. Taking them to doctors appointments, scheduling biopsy surgeries, taking them to occupational therapy, play therapy, and school all on her own. She’s been a chauffeur for our whole family, driving me to physical therapy, radiation therapy, appointments with my oncologist, radiologist, naturopath, brain surgeon, and phlebotomist among others. She’s been my nurse, at times giving me regular acupuncture in my feet, giving me shots in my stomach, preparing my food, helping me down the stairs, and helping me figure out my pills. She’s been forced into farming, caring for our fish, our cat, our dog, and our chickens…none of which she truly cares about. She’s endured my moodiness, my varying pain threshold, my sleepiness, my vile body odor, and the random water weight that seems to creep up my face and arm pits (gross right?). She’s endured and supported our family amidst the unknowness of everything–is it benign or cancerous? Is it bad cancer or not-to-bad cancer? Is it in my brain or not? Is it gone or not? Am I dying or not? Will I walk again or not? Is this the new normal or not? She works as a teacher. She works as a creator of community. She works constantly and looks beautiful all throughout!

If you were sitting in Mon Ami (the cafe by our home) where Jess is sitting only three tables away with one of her friends, you’d see me awkwardly tearing up as I think about how blessed I am to be partners with such an amazing woman. I have no idea how long we’ll be blessed to walk this earth together but I can be certain that every moment spent with her is one more than I deserve and I am learning to cherish each and every single experience with the most lovely, beautiful woman I could ask for.

Happy birthday Jess!

What is Healthy Recovery?

Posted on by
3

So we’re in recovery mode now. I’ve been done with radiation and chemo for a few weeks and slowly but surely I’m gaining back strength and energy. In many ways I almost feel like a real boy again (I’m picturing myself saying this like Pinocchio).

But it’s been a strange process to realize how difficult recovery is truly going to be. The physical recovery is one thing: neuro-rehab (starting at the end of the month) to hopefully get my paralyzed leg working fully, eating healthy and normal again now that I’m able to, getting into normal sleep habits now that I’m off steroids, and learning to balance my energy so I don’t over do it and crash. It’s the other recovery stuff that is so difficult. I’ve got a wife who’s been a single mom caring for an invalid for three plus months and she’s tired. I’ve got kids who are not only grieving the reality of the previous three months but are still missing the dad that went on bike rides with them and could wrestle with them. And then there’s the reality of MRI scans on September 22nd and the October 12th meeting with my oncologist to determine what’s next. Am I cancer free? Has it spread to my brain? Has the tumor grown? Is the tumor gone?

Relatively speaking I feel great (relatively speaking!) part of me is ready to go back to work full-time, to be the busy body around the house that I used to be, and to be out in the real world more consistently. But I am learning (thanks to advice from family, mentors, doctors, and friends) that this is not healthy recovery!!!

Here’s what I think a healthy recovery is looking like for us (though it may change tomorrow):

  • Spending lots of time together as a family
  • Finding a good and simple rhythm to our life as a family (thanks to Jones going to school we’re actually achieving this!)
  • Discovering and utilizing tools for our kids to work through their grief and anger over my sickness
  • Taking time away for just Jess and I (counting down to September 30th at the beach)
  • Getting a dog (yes, we just got a dog! Even though Jess and I are definitely not dog people it seemed like a good idea for our kids. We call it a therapy dog…and her name is Ruby)
  • Physical therapy–starting at the end of the month. Hopefully it’ll help and I’ll one day be able to drive again!
  •  Creating space for Jess to recover–this might be THE most important thing considering how much she’s given over the last three months
  • Keeping life simple and not adding in too much stuff and clutter (even though we are eager to do so many things!)
  • Pursuing a healthy spiritual vitality for our whole family
  • Keeping a simple, yet consistent, connection with our downtown community
  • Finding ways to laugh, have fun, and be silly.
I’m sure there’s more that belongs on that list. Recovery is tough ’cause it’s not just a matter of doing the things we did before. Everything has changed, we now live in a post-my-dad-has-cancer world, and things are different now. Recovery is exciting too because it’s a process of discovery–discovery of what the new ‘normal’ is going to be.
Thank you all for being present and patient with us as we discover and re-discover what healthy recovery looks like.
peace.

Top 15 Things I've Learned About Fighting Cancer

Posted on by
3

(I could have typed a list of twenty…but here are fifteen in no specific order)

  1. Having a good medical clinic with not only doctors that you trust but a supporting staff that serves as your advocate is huge (thank you Northwest Cancer Specialists!)
  2. Physically and emotionally things can swing from amazingly wonderful to hell and back in a matter of hours. Finding that tension between living in the moment and realizing that it truly is just a moment is both important and difficult.
  3. Learning to be honest with yourself and with others about how you feel (both good and bad…though for me being honest with self and others about the bad was much more difficult) is hugely important not only for support but also for your health.
  4. Prayer works. I don’t mean to say that it works like some amulet or charm, that it’s a hocus pocus trick that if you get enough people praying you’re going to make it. But God does speak, he does act, and he does value our voices. In all of my healing (both emotional and physical) prayer has been central…and it makes a difference.
  5. I’d rather be sick than be the caretaker. This is harder for my wife than it is for me and she deserves all the grace, pampering, and vacations I can muster to show her how grateful I am.
  6. A loving and capable wife/caretaker covers a multitude of sins. If it weren’t for Jess I would not be doing as well as I’m doing now. I wouldn’t have always remembered or had the strength to take my meds and do the things I need to do to bring healing. From shots in the belly to chicken noodle soup, from acupuncture in my feet to being my private chauffeur she has covered every base and done it without complaining or faltering even once. Simply amazing.
  7. Being positive is generally easy when you’re constantly showered with support from a loving community.
  8. Being prayed over by your doctors is kind of surreal. Both my oncologist and my naturopath have held my hands and prayed over me in their office. It was a trip and it was pretty damn cool. Not only have both of these two docs prayed over me but they are actively working in partnership together (a very rare thing). What a blessing!
  9. Setbacks are a part of the mix but they don’t define it. Blood clots, pulmonary embolisms, side affects, headaches, vomiting, constipation, weight loss and weight gain, swelling, rashes, etc. came and went (though some seem to linger at times) but they are not the focus. It gets easy to be caught up in these ‘little’ things and forget the real task at hand: killing cancer.
  10. I’d rather be in pain (to an extent) than be constantly overwhelmed with exhaustion. When you’re so tired that you cannot physically function in any way and your brain is in a constant cloud its quite debilitating. At the same time, however, it doesn’t ‘feel’ like anythings wrong. I like that when I’m in physical pain I feel like I’ve got something to fight against, an enemy to beat. The exhaustion stuff was hard on the emotions and soul.
  11. Waiting is what you do. It’s just a part of it whether you like it or not. You wait for results, you wait for recovery, you wait in doctors offices, you wait…wait…wait. Get used to waiting.
  12. There are three ways that we have been blessed by people’s help: Routine, random, and offered. The routine help has been a lifesaver (no joke, i don’t say that lightly); knowing that someone will help us pick up our house on a few specific days a week allows us to focus on things like expending the little energy we have with our children instead of the dishes. Routine help has been wonderful. The spontaneous/random stuff has been great too: when people showed up with cups of coffee early in the morning or pints of ice cream in the evening, when people randomly watered our failing garden outside because they noticed it needed to be done…this kind of stuff brought tears to my eyes often. Finally (and I don’t say this in a jaded way) anytime people offered to help (even if they were unable to follow through) it was a blessing to be genuinely cared about. Even when it did not come to fruition the offers mean something to me and I am grateful.
  13. Supportive parents (on both sides) is such a gift. We couldn’t have gotten this far without our family (siblings included!!). Enough said.
  14. You don’t know what works…and you probably never will. If (when) the cancer is gone I won’t know if it’s because of your prayer, the natural supplements I take, the hydro-therapy I do, the positive energy in our life, the radiation, the chemo, the things I’m doing to make my body more alkaline, the food I eat, the acupuncture treatments, or something else! Most likely the answer is “all of the above” but all I can do is to keep doing the next most right thing.
  15. A story is always being told. In death, in life, in sickness, and in health our lives are telling a story. I hope my story is defined by its inclusion in one larger than itself (larger than myself!) that includes love winning, death being overrun, and peace reinging free. And I hope that regardless of my life situation the story I live is consistent with its inclusion in the larger narrative.