I miss drinking coffee.
Not only am I spoiled by living in Central Oregon and having access to some of the best roasters EVER, but it’s part of my ritual. It’s comfort. No matter the season, I can happily rely on wrapping my hands around an obscenely sized mug and sipping my way to it’s bottom throughout my morning.
I haven’t done this in a while. I’ve left behind quite a few of my rituals. A lot of my comforts have been laid aside for what we now call, my “new normal”. Writing is one of those things. I used to write so often. I craved the outlet. I felt like I was documenting, recording, venting, being transparent. Maybe even bringing others together who might have something in common. For quite some time, I’ve felt a sense of decapitation. Lots of feelings have swirled around that headlessness. Mostly directionless. Feeling foggy. Numb. Misunderstood. Like my ship has been hit. With that came a need to lay quiet. To be still. To observe more and receive direction.
I have always written. It’s part of who I am. It’s how I process both goodness and grief. There are a million good things that come from writing publicly to the few negatives that come with putting yourself out there to be perceived and assessed, to be criticized and evaluated. The support that I have received over the past year from the growing plethora of people affected in some way by cancer has been overwhelming and amazing. That in itself makes it all worthwhile. This journey has been quite a beautiful one because of the people who have come into my life because I have put mine out there. On the flip side, during your lifetime there will be those who may never believe in you. They may absolutely NEVER “get” you. Sometimes, these people you may feel know you well, so it feels extra undeserved. Sometimes the people who don’t believe in you will be people you don’t even know, just looking for someone to criticize. Whatever the case may be, it is important to note that not everyone will agree with the things that you are doing, and that’s totally ok. The key is to stop letting people who do so little for your life, control so much of your mind, feelings and emotions. This is where I am. I’ve let go of those that God found a way to weed out and made permanent space for the people He has, over time, handpicked to be here.
That being said, despite my weariness, my weakness, my growing tired body; I still have a wildfire in my soul. I hope to breathe it back to life, after these past few months of feeling snuffed out. God has stirred that in me over and over again. My days and my world and my head have been extremely full…. but my words…. they have been silent. Intentionally. Something stole my spark. After having thoughts and blog content a-plenty, but no drive to post or write ….I pray for the invincible desire to put it all out there again.
I realize the obvious scattered-ness of this entry, but since an update is hugely over due, I kind of just spit it all out there. I’ll try to cliff note the last several months for those who don’t follow my facebook updates. Bare with me (and I promise to get back to more insightful, cheery postings soon!)
Since summer started, I haven’t stopped running. Sometimes, quite literally. I’m not sure if it was my attempt to fill my days to the brim after months of being on lockdown, or a mission to distract myself from what was happening to my body, almost like I was attempting to prove to myself that I REALLY wasn’t sick. Running, running, running… mommy’ing, friend’ing, filling my days with family and outings, and tasks, household chores, doctor appointments, chiropractor appointments, naturopath appointments, anything appointments. My weeks and days were mostly attempts at finding anything that would slow down the relapse we discovered only 2 months after stopping chemo this year. A severe blow to my entire family and circle of friends; we licked our wounds and I hit the ground ready to figure out my next steps. I knew I needed a clinical trial, since I’ve been strongly opposed to a second round of chemotherapy. Despite the adamant advise from my doctors, I started researching everything I could and with the help of a clinical researcher, who started filling my inbox quickly with trials I might be eligible for. Months was spent filtering through them, fundraising and trying to configure how much time I had until I HAD to start something again.That time came the day after returning home from our annual family camping trip at Trinity Lake.
I had been sick off and on during that trip and knew my time was running out. As soon as I got home, I high tailed it to see my doctor and off to the hospital I went.
My lungs were buried in fluid and my kidneys were shutting down. Six days in the hospital, a surgery and two lung taps later, they let me go home and told me to start chemo right away. I argued with several of my doctors for a few days and we were off to do some mach speed research. Thank God for my sister-in-law, Kacy who took it as personal mission to contact several Universities, hospitals, trial coordinators, doctors and researchers.
Ben, our clinical researcher recommended IAT and we went back and forth between that and the Gerson Institute for about 4 days before deciding on IAT. A week later, several faxes, phone calls and last minute travel arrangements later, a tearful good bye from the boys, we landed in Freeport, Bahamas for an 8 week immunotherapy program.
My parents dropped everything and came with me to get me settled here, and so far, we’re a week in. I’ll start detailing the bits of that journey as often as possible as I feel it’s imperative to get this information out there for others going through the same thing.
… and a final sassy note….
I just spent 16 minutes Skype’ing my boys…. I just saw their faces across 4000 miles. They are not with me and I am not with them. Cancer, I hate you because you are ruthless and unfair.
I will kill you.
Pardon the dust ’round here. I know it’s been quite some time. The thing is…
I have oh so much to say and far too little organizational tools in my headspace right now to put anything down that feels jointed. So, while I fly through my day (and that’s just about exactly what it feels like) I come across huge thoughts and bits of introspect that often times stop me right in my tracks, but while I ponder and brood over it … I’m off and brooding over sumpin’ else. Then two weeks fly by. Or 4. Then I’m here — ‘splainin’ where I’ve been.
I’ll be honest too. I’ve had some rough weeks. I’ve soaked a few bits of tissue in both the good and the not so good. But I love that the good trumps the bad. The good carries weight. I can FEEL it’s sway. God has been hard at work on me. It’s like He has His big index finger, dipped in my chest, swirling and twirling and whirling it around in a slow rotation that becomes more and more visible the longer He does it, like a plume of water in a vortex.
Pleading. Begging. God, use me, show me, make me an implementer, an instrument. Bring good here. Show light here where it’s dark. Use this tiny little story of mine and make it seriously significant………………
(and He is.)
When we are immersed in the worst of something, we resolve ourselves to being inadequate of repairing … well, anything. (We get wilty and weak.)
But show up and stand tall to the good in something, and we move towards the best in … everything. I’m ready to move towards the best in everything. I just am.
One of my favorites ::
Lord make me an instrument of your peace,
Where there is hatred let me sow love.
Where there is injury, pardon.
Where there is doubt, faith.
Where there is despair, hope.
Where there is darkness, light.
And where there is sadness, joy.
Oh, divine master grant that I may
not so much seek to be consoled as to console;
to be understood as to understand;
To be loved as to love
For it is in giving that we receive-
it is in pardoning that we are pardoned.
And it’s in dying that we are born to eternal life.
The last few weeks have been FULL. There have been birthdays and celebrations and long drives and 3 hour dinners, late night talks and amazing time with family. I’ve wrapped my arms around all of my incredible (local) friends and really put solid energy into spending quality time with them. I’ve encountered some of the most stouthearted people. Warriors in Christ. New friends that have truly become underpinnings and reinforcements when I’ve literally felt like my legs had fallen out from under me. I’ve been devoted to creating tribute to these people. MEMORIES. Chances to eat and laugh and contemplate and muse on. I let myself dream with them, beyond cancer deadlines and looming diagnosis. Outside of fear and worry and things that are not mine to control. God has chosen soldiers for me in this season. Do you know what a soldier is? It’s someone who fights FOR you.
My gosh, I’m thankful. I am LEARNING. And my heart is FULL.
I spend a lot of time now thinking of when I’ve been my most happiest. Do you know when yours was? I reflect back on snipits that really stand out to me. I think this is probably a normal phase for someone in my place right now. I let myself go backwards here, even though I am facing forward with all my might. I know that I believe that God is good (abundantly good!) and has purpose. I know I’ve asked a thousand times in the last year, why He would allow turmoil or induct a season that has no worth or contribution to my future. That’s just it, He doesn’t. The Hebrews felt that the future was not whole without the past. I’m in the same boat. It all leads here. Now… live intentionally.
For me, I’m cataloging. I’m allowing myself valid nostalgia. I think about peanut butter and banana sandwiches in the back yard when I was little. Of hanging on the fence hollaring out to my friends who lived on the other side. Of my yellow banana seat bike that I rode for hundreds of miles. I think about my childhood dog, Sam, and how she trompled behind my brother and I throughout the neighborhood, wherever our tireless feet would take us. I think about swimming with my dad as he tirelessly dropped quarters for us to race and find at the bottom of the pool. I think about what a treat it was to stop at 31 flavors for rainbow sherbet. I remember tapping morse code messages on the wall in my bedroom at night to my brother on the other side. I think about Camp Tadmor and my summers spent giggling over boys and Wet N Wild shimmer lip gloss. I remember bike rides to the Pole Pedal Paddle and fireworks off the butte … spending warm twilights at the softball fields collecting pop cans to buy Pixie Stix and licorice ropes. I remember spending every July at Trinity Lake, where I would crush on a different boy each year, drink my first beer and worry about nothing but my tan and my hair.
Mmmmmm, isn’t the good, GOOD? What are YOURS?
Go on you peeps of awesomeness…
continue being remarkable.
be present… here… now.
Now that I’ve committed to spending my time healing and focusing on doing MY part to keep things in check, my days are usually pretty full. I don’t think I’ve ever been busier and yet, I feel perpetually behind on just about everything.
Many ask what I’m doing with my days, now that I’m converting to so many lifestyle changes, so I thought for anyone in my shoes later (God forbid), it might be helpful to see a standard day/week.
I usually wake up between 6:30 – 7am depending on my schedule with the boys, if they are home, it’s up and at it early. Their request for pancakes starts promptly upon peeling back my eyelids. So a typical morning is running around getting breakfast going, the dog let out and fed, clothes laid out for school and the shuffle of loading backpacks, homework, brushing teeth, etc. I usually sneak in a shower while they stuff their faces with something gluten free, toss in a load of laundry, wipe down the counters and off we go.
After dropping the boys at school, which is roughly 15 minutes away, I return home and start the routine. Configuring the pile of supplements and pills for that day, I start slicing and dicing for juicing that day and I chug my glass of Himalayan salt and iodine water. I’ll usually spend a hour or so catching up on email, having a cup of coffee, answering messages, going through my to-do list, (usually adding to it), tossing in another load of laundry or folding one, making beds, sweeping up from the morning tornado and returning any phone calls I need to. I usually can get my week of doctor appointments scheduled for the following week. By this time, I’ve finished a juice and it’s time to make another.
I fill the majority of my days depending on the day of the week with what feels like a never ending list of to-do’s. I usually have some sort of client communication to follow up on, a doctor to call, a parent to fill in, plans to make for the boys. I spend an hour or so in the yard everyday, pulling weeds, planting, mowing. The garden boxes are slowly coming along and that will take a bit of my time soon. After taking care of house and home, I usually load up for the day, head into Bend and start a round of appointments. These usually take a few hours a day and if I have the kiddos, I usually have to race back to pick them up from school, get them changed, fed and off to baseball. On the days they are gone, I usually will make the most of my time in town, stocking up on things we need, meeting up with friends, getting any shopping done, washing the car, or planning meetings for upcoming plans for the non-profit. On the days I don’t have the kiddos, I try to cram as many doctor appointments in as possible so I’m free for them completely, when they are home. Evenings are filled with making dinner, packing lunches, working on homework, boy showers, haircuts, reading, playing with the dog and working around the house. I often times feel like the days are gone before they even start. I feel busier than I have ever been.
Here’s this week for example:
-answer emails to pending clients
-call NY facility for coordination trial details
-finish logo comps and send to client
-coordinate video project for recent fund raiser
-call naturopath for this weeks infusion appts and supplement order
-3 hour infusion
-Patti’s retirement party
-order gravel/mulch for driveway
-monthly blood draw
-dinner with the fam
-3 hour infusion
-Oncology appointment/exam to go over monthly numbers
-early release, pick up boys at 2:30
-book club/study at church
-Last day of school (volunteer) pick up boys at 3:30
-Naturopath blood wash
-Cohen’s baseball game
-No school, boys home
-3 hour infusion
-prep for yard work projects on Saturday
-planned work party in yard, lay new driveway, realign irrigation lines, build fire pit, stain concrete, build garden fence, plant seedlings/starts.
-day with friends
-prep for session on Monday
Oh, Jen. I have know you for a long time now. We once had parallel lives. Both passionate photographers. Both once married to firefighters. Both with two boys of the same ages. Both lovers of art, design, travel, and so much more. We vacationed together, we worked together and we laughed together. Our kids played together.
And then it happened. Just a year ago, I watched the direction of our lives fork. Yours went the way of doctors, specialists, hospitals, chemo, pills, shots, tests and more emotional and physical pain than anyone should ever endure. From far away, I watched a community rally around you and I watched you fight with more strength and determination than I could ever imagine. You are loved by so many. Your story touches me and thousands of others and we pray for you and hope and dream for your future, with the two things we all want….health and happiness.
Jen, spending this weekend with you was a gift. I so wanted to take care of you, and make your pain go away…even for just a little while. I marveled at how you administer your own shots every hour and take so many meds…a non-stop routine with no end in sight, ever. I wanted to feed you, to hydrate you, to let you rest in a place where you would not have do do anything but get stronger. I begged you to eat and to drink, and you did a little of both for me, and then it all came back up again. I felt horrible. And powerless. I watched you sleep for most of the day, checking on you every half hour and wondering how you can go on with this pain and exhaustion. You told me you have no choice, you HAVE to fight, for your boys. I get that.
But, I still have so much trouble understanding how this could all happen to you. It is so wrong. So unfair. We talked about that this weekend a bit and I was happy to see that you had not lost your faith, or your inner strength, even though I am still not so sure I haven’t lost mine. On the outside, you still look beautiful and healthy. I do like how you have managed to stay gorgeous, mama. Maybe it’s a sign of more good things to come. I am counting on it.
Please keep fighting, Jen. We are all fighting along with you. We love you.
And, to the rest of the photo community and the world: please keep supporting Jen…with your thoughts, your words, or a donation of any amount. The cost of fighting cancer is just staggering.
Your notes of love and support give her so much strength. Email Jen at firstname.lastname@example.org
Jen Burgess Thompson is no longer in pain. She went to be with our Lord at 5:20 (EDT) on 10-12-2012. She passed away peacefully while holding our hands. We want to thank all her many friends and supporters for your uplifting thoughts, prayers, meals fundraisers, Shots 4 Jen and so much more. Each of you meant so much to her, to all of us. Our love to all of you! -Bill and Patti Burgess and family.