I go to the website and think hell yeah, I want to be Out Living It! I got this…how do I choose between kayaking, surfing, or climbing? First Descents looks to be a perfect paring for this PDX girl! Oh, that’s right, this version of me has been slightly modified. Well…here goes something!
I enthusiastically sign up for a week long kayaking adventure that would be filled with AYA (adolescent and young adult) cancer survivors. 18+months later, opportunity came knocking, not an ideal time for me. However, after all this waiting I was not going to let it float on by.
In my barely-getting-by mind and body, I boarded a plane. 5-hours later I found myself at beautiful Tarkio River Lodge. A large cabin, bunk house, yurt, barn, and caboose were perfectly placed to allow for maximum visibility of the river that bordered the property. The same river that would challenge me daily as I attempt to hitch a ride downstream in my kayak.
It was exhausting. Learning something new. Baking in the warm sun. Freezing in the cold water. Challenging yourself to not panic when you are upside down, attached to your kayak. Walking up a short hill when your lungs don’t work so well.
photo taken by Casey Brown
I had little energy for socializing after long days on the water. Energy was replenished by delicious healthy meals prepared by two onsite chefs. Most of my mingling took place at mealtime when I tried hard to genuinely connect with a few fellow survivors.
- First Descents has excellent staff that know the sport, can teach the sport, and provide you with confidence to trust them
if when you need a rescue.
- People unfamiliar with eating healthy, mostly vegetarian meals struggle when that is the only option.
- Out of 14 survivors, only 2 of us had metastatic cancer. Permanent residence in cancer land is frankly different; I was grateful to have a buddy. I’m not so convinced the programing is set up for people like me, those of us living with cancer. I will need to mull this over for a week or two.
- I am going to learn how to make pumpkin seed milk. It was delicious!
Like a rebellious teenager my care team announced, “We will get in trouble…That’s okay with us…We are going to do what is best for you!”
The words came at me like cold glass of water tossed in my face.
Let me make sure I heard you correctly… I won’t get excused from the trial if I get a spot zapped…YOU will get into hot water and you are okay with that. I will still get my cancer controlling Alectinib pills.
The invisible shroud of sadness induced exhaustion I had been wearing for over a week vanished.
I am sure this is common practice, for a care center to take the heat with a patient’s best interest in mind. I want it to be if it is not.
Appropriately, later that day I found myself at the Oregon Coast. Feeling the warm gritty sand on my legs and feet. Watching kids and dogs play on the vast playground. Listening to the power of the ocean. I had no doubt that I was spending my day, my precious gift of a day, doing exactly the right thing.
I am pleased to announce that my next eye exam will take place in 6 months. Six months? Well, that can’t be a major problem!
I have officially been diagnosed with a mild case of Radiation Retinopathy. Whole Brain Radiation is the cause. The upside is the ‘mild’ part. If/when a transition occurs to moderate or beyond, treatment exists.
I am not unique when I say, I hate that the treatment of cancer comes with many destructive side effects. Do I get a badge for living long enough to experience them? Cancer sucks.
Tuesday morning was brutal. I had a 7:30am appointment to get a cracked filling replaced. It’s been years since I’ve left the house by 7. I had enough coffee in my system to register the dentist say, “Kimberly, we need to replace this filling with a crown.” Sigh. Thinking of course you do I responded “okay”.
I headed off to my eye appointment, sore mouthed and temporarily crowned looking for some answers to the eye hemorrhaging. It took 2-hours to discover that the doctor I was scheduled with was not a retina specialist. Are you kidding me?! Attempt #2 to see a retina specialist will take place next week.
Wednesday afternoon the name on the caller id took my breath away. I wanted the call while dreading it. My treatment options regarding my growing brain tumor were presented to me. Wow. No smoking gun. Half-hour later I made my choice.
The growing brain tumor is not a lesion that is measured per trial. I have 5 trial lesions that are measured to determine if the trial drug is working or not. So technically, the trial drug is still working – and actually is since all other tumors in my body are still responding. If the growing tumor was a trial lesion I would be excused from the trial. Since it is not, I get to make some decisions on my own. If/when I radiate I will loose trial eligibility.
If I remain symptom free, I will see how the brain MRI looks in 5 weeks and take action if necessary. I suppose I made the decision to put it off. Seemed like the way to go.
Sitting in the odd chair that has a midcentury feel, flat black leather, chrome legs and sleek lines. Nearly fit for my living room but it definitely screamed clinical. Does the Herman Miller medical line have chairs? Am I parked in one? My first hospital room had a few Herman Miller products. Not the products you want, like elegant swanky chairs, but heavy plastic antibacterial cabinetry on wheels. I wonder if I’d be paying attention to the bad news any better, or at all, if the setting was like a Herman Miller living room display, sexy furniture from Design
Outside of My Within Reach.
I have some strange hemorrhaging and swelling in my eyes. Plural, now both of them. I should have paid more attention at the eye-guys description of the issue at hand. I know I’m going to be asked by others What’s going on with your eyes? Truth is, right now, I could care less of what is going on with them. I am singularly focused on how this impacts Alectinib, my anti-cancer treatment.
I’ll find out next week, if not before. For now I wait. Pretend that I’m not worried. Play 100-questions in my head.
Voila! Like magic the front yard was transformed into a thing of beauty! That is if you define magic by a handful of friends each swinging by at different points in a day to help you move dirt, plant greenery, and move more dirt.
How I managed to pull off 8-hours of working in the sun is a mystery. How I managed to get my body out of bed today, the day after, even a greater mystery. Heck, I’ll take what ever good comes my way!
A burst of energy is a treat. Using it to do some manual labor felt good. Working hard with a group. Being an active participant in a work party. Taking the same number of breaks as everyone else. Feeling and acting like the person I want to be. Satisfied with my ability to output.
Yes. Satisfied with myself. Now that is magical.
B I G thank you to Avery, Daryl, Stacy, SW and Geiger clan.
Recently my husband and I co-hosted a baby shower. Friends who live a few houses down are the expecting couple. For them I’m sure this is a very scary/exciting/happy/terrifying time but for me it is happy; nothing but happy!
The gathering was filled with entertaining games, delicious food, and high quality friends and family. The perfect recipe for a fantastic time. The parents-to-be were happy and that should be all that matters.
Partnering with my husband, it was important that we both have a good time. We did. I’m fairly certain SW’s good time was based on mine and I’m okay with that. My good time was much deeper than the 3-hours of laughing and joking at the party. I enjoyed the change of focus for a few weeks. A welcomed perspective change. I did not think of aging, er not-aging. Thoughts of cancer and it’s side effects were pushed aside. My focus was on life. A new life. A new beginning. A clean slate. A precious pure start.
I understand why some believe that this cycle starts again after death. I am filled with a sense of calm, peace, and even joy thinking that could happen to me.