Memorial Speaking

Yesterday, I spoke at a memorial service for the first time, A Living Legacy Memorial Celebration for Marcy Westerling.

MW bike

I have experience with public speaking and lately the topic revolves around my experiences living with metastatic lung cancer. Now, 4-years plus living in cancer land, I can get through the highs and lows with little emotional response. Not the case yesterday at the memorial.

Crafting my speech I second-guessed nearly every line I typed. I struggled to find the perfect words. SW reminded me ‘be you, that’s what Marcy would want’. Attempting to abort the entire difficult endeavor, I sent an email to the co-organizer saying I’d be happy to step down if they had too many speakers. Nope. I was speaking and near the end after a video of Marcy, just before Mike, Marcy’s spouse.  ….okay…?!

I spoke my standard ‘short, to the point, make you laugh, make you cry, and give you something to think about’ style.  I got through without tears and making eye contact with the audience most of the time.

Upon completion, after two hugs to the co-hosts, I took my seat in the front row.

It wasn’t until 1:17 am, 9-hours after the event, when the bulk of emotions hit me. Sad. So sad. Grieving. Tears pooling. I missed my friend. Grinning about dropping an F-bomb in a church. (I swear Marcy made me do it!) Thinking about Mike, knowing that one day, chances are good, SW will be in his same shoes. The topic that consistently makes my guts clench and takes my breath away.

I managed to get some sleep once the hamster in my brain stopped running on its wheel.

Like I said in my speech… You take a risk investing in relationships with people who have terminal cancer. You place yourself in a vulnerable zone. It often ends sadly and it can be painful.  And, it will be worth every bit of it.

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My FD1 Experience

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.

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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.

My takeaways….

  • 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!
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Spending a Day

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.

rockaway beach oregon

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Cause: Prior Treatment

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.

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The Hits Keep Comin’

FullSizeRender-16Tuesday 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.

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Starting a Collection

Still feeling nothing from the retina hemorrhage, I am being told that I have more in both eyes now. Looking at my eye images on screen while being told this is blood… that is likely plasma…this here is…  I’m drifting, his words are floating right on by. What is going on with my body?  Why are you breaking down? I need you to work!

I’d be much more in tune if the ear thing hadn’t just happened.

Lefty, the rebellious ear with more holes in it, slowly decided to stop working a short time ago. Thinking back to when I purchased a new car radio, or what ever you call them now, it was brought to my attention that my driver-side front speaker was not working. Makes sense now. Seems that the cause is not my 2011 cisplatin based chemo cocktail but otosclerosis, not cancer related. Not that the cause really matters to me.

image.resize.310.310Many tests and stern insurance company conversations later I can hear, in stereo. I’m sporting a Nano, a Phonak Virto Q Nano.  I just love it.

I don’t love the eye issues. Fingers crossed the retina specialist I see tomorrow will have some answers.

I don’t love collecting problems. I am leery of what lies a head.

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Huh?

whyeyeouddaSitting 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.

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Sad, sad and more sad

A good friend of mine died.  She died of Ovarian Cancer.  I’ve added Ovarian Cancer to my “I hope you get cancer and die” list.

She was the first woman I really clicked with in cancer land.  Funny how we met.  We were both clients at Portland’s Immune Enhancement Project. She was tracking me.  She would schedule her appointments around mine for the chance that we would connect in the waiting room.  Apparently she was excited to see another “young one”.  She was talking to SW when I finished up with acupuncture.  While trying to drink the cold water in the miniature dixie cup she asked me what stage my lung cancer was.  I barely eked out, “it’s stage 4”.  Tears streaming down my cheeks; this was the first time I spoke it to someone.

The three of us left the small waiting room after being shushed several times by the practitioners. We grabbed a table and some beverages outside at a nearby pizza shop.  Marcy talked and I listened in awe.  Forget putting her on a pedestal, I placed her on top of Mt. Everest.  She was the complete opposite of the doom and gloom depression rift I was in.   She was determined to live.  Thankfully her determination was contagious.  She played a major part in helping me learn how to navigate cancer land.

For over 3-years, not many days went by without the two of us communicating.  In her final weeks that communication became nonexistent.  It was sad but I accepted it.  In my head I knew that it would be fine if we did not speak or hold hands one last time.  To my surprise, and nearly her entire home care team, she phoned me hours before her life ended.  As directed by her, I showed up at her bedside to hold her hand.  A 30-minute visit to say I love you and goodbye to her body was satisfying.  An email stating that she died later that night did not surprise me.

I miss my friend.

Read more about Marcy here.

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Work. Lots and lots of work.

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.

Pots

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.

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It’s a…. BABY!

babycraftsRecently 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.

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