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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Another Good Day

I have a tendency to overcommit myself.  I do best when I have three things or less to do a day.  I know, sounds very under-commiting, but it is perfect for me, right now.

yammersI no longer do well with a long list of things to accomplish. I get stressed out. I start forgetting things.  I over caffeinate. I get hungry and spacey. I can’t relax enough to nap.  I binge watch Netflix. I criticize myself for not exercising. It makes for a pretty sad day.

I prefer days like yesterday. Lounge around drinking coffee and reading until my lunch date. Lunch out on a warm covered patio. Swing by the market for groceries. An afternoon bike ride.  Pet Yam (meow).  Some gardening in the shade before dinner. An after dinner stroll with my husband. I’ll take this any day of the week. I need things simple and I like them simple.

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Loose the Stigma, Man…

Back from vacation and catching up on some great lung cancer related articles

Journalist and cancer survivor Diane Mapes writes for Fred Hutchinson on the lung cancer stigma here… Lung Cancer Blame Game

Be sure to click on the image of the girl with her arms spread wide – you’ll see some familure faces in the slideshow.

Another great read is an article by Cheryl Strayed (author of Wild)…  The Painful Personal Toll Lung Cancer has Taken on My Life

Enjoy!

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Holy schamoly!

hope'n it upThe number of survivors at LUNGevity Hope Summit 2015 was 150. How about that?! How did it happen? Are more patients feeling better due to recent rapid advances in treatment options for lung cancer? Could they be feeling less scared to identify themselves as having lung cancer?Or is the lung cancer population finally forming a large uniformed force like the ladies in pink? Regardless, it was pretty awesome to see and be apart of.

My special moments:

1.Hearing Nancy Brinker state that sometimes you need to be a little irritating to get people to listen.

2. Closing down the hotel bar with Kim, Davin, Kimberly, Jessica, Anne and Dusty. Life is so much better with friends you can share the good, bad and ugly with.

3. Having to convince Dr Raja Flores that I did not have my early stage lung cancer surgically removed. …blush…giggle, giggle… I’m advanced, I’ve had it all but surgery…

4. Watching Chris Draft perform – I mean speak – on the topic of awareness and advocacy. I’m pretty certain that man could sell a fireplace to the devil. Best in Show goes to Chris.

5. Alaska Airlines’ lost and found system. I left my prescription eye glasses on the PDX-DCA flight. Two days later, they were retrieved and delivered to me at the gate of my DCA-PDX flight. Impressive!

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