Tail End of May

Every flower that blooms has to go through a whole lot of Dirt.

I decided that I would attempt a taper on my, not so nice to me, DEX. I’m quite sure I have mentioned how much I dislike this drug. All the false energy dashing through my body; leaving a streak of grumpy achy cells as it passes by. A day after I said goodbye to my filthy steroids, SW was taking my body back to my care center. Yup, my left ankle became Super-Sized. Hum. Is this a good thing? A bad thing? Or just a thing?

Walking away from the Diagnostic Imaging check-in desk to plop down next to SW, I abruptly stop in my tracks, make a U-turn to see if the receptionist has a light green bodily fluids bag. Eventually a bag was found and to my surprise, I filled the bag quick-like as I attempt to find my way towards the bathrooms. Oh no!

Hobbling around from Point A to Point B on my still swollen left ankle I found a spot to trash my filled up green bag. Clearly, my new and improved oral blood thinner is not pulling its weight and the ultrasound imaging agrees.

My mostly competent brain is now filled with stress. Do I need a new blood thinner? Yes. Do I need new steroids? I think so.

Hours later I am at home sorting my weekly medications. Wait, what is this, and this one too? Oh no, are they all funky. I want 90-day medications that I can mail order. And this one, where is this store? Oh my…

 

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Life Isn’t Perfect

Life isn’t perfect, but love doesn’t care.

Going out to breakfast at one of our favorite neighborhood spots called Gravy, I’m prepared to order my usual dishes to fill my belly – a warmed biscuit smothered in sausage gravy and one bowl of sweetened oatmeal topped with scrumptious fresh fruit. Yum! Yum! When our server arrives I go out on a limb, ditch the traditional Kim order and request Brioche French toast. Also, a never ending supply of coffee and cream. A perfect combination for today!

Today, May 11th, life is different in a good sort of way. My delightful other half, SW, gave me two charming necklaces. Opening up the gift bag I noticed one was a morning necklace and the other an evening necklace. Two? I am a lucky girl! Or, are the two really mimicking my AM pills and my PM pills found in my cheesy plastic pill sorter taking up residence on my kitchen counter?

Today marks a day on our calendar that screams, “You’ve done it girl! You have made it 8-years living with advanced lung cancer!”

Wowza! I have done it and really, REALLY feels so good!

Exiting Gravy we walk north, slowly moving uphill, we find ourselves walking alongside VAN1SH, our perfect van. Silence has taken us over as SW futzes with his keys. Soon, loaded in, we are headed towards our house less than 2 miles away. At home we quietly scamper towards our bed. With limited eye contact, together we grasp hands and fall asleep.

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Toothpicks

Make today a day for the fancy toothpicks.

I logged in lots of MRI scan time Monday and Tuesday this week. Monday’s scan involved Iron Infusion contrast, an oxygen monitor and, don’t forget, a heart rate monitor. I was all dressed up with only one place to go! I totaled about 160 minutes in a not so friendly MRI chamber. Exhausting. I got through it all and I wonder is this really worth it?

I got a MyChart message from my neck up oncologist, Doctor A. For the most part we have found a way to work together as long as I am kept current on brain spots. Are they growing, shrinking, or holding steady?

The message: my one white spot, near-ish my left ear, is same size as my MRI scan 4 weeks ago. So, all-in-all a wash; that sounds good to me!

For now, SW and I keep going forward to figure out what this spot is. And YES, it is a perfect day to use those fancy toothpicks tucked away at home in a cupboard!

Me and my BIG MRI machine for my itty-bitty brain.

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How Do Friends Treat You?

There’s no problem that friends cannot confront, combat, plot against, ignore, make fun of, drown in chocolate sauce or run over with the car.

Years ago I had a cancer therapist who warned me of friends who would be there for me; then one day, poof, they might be gone. Not my friends! I wanted to scream. However, that sad little saying might just be true.

My gang of pals has come, gone, shifted, evolved, changed and some friends, SW says, “Have turned into comets.” Here today, gone the next and may not be seen for another 75 years! I do what I am able to reach out. It is not easy for me to do this with 8-years of NSCLC and treatment under my belt. Usually a micro-sized text message can be sent and received, but a reply back with an endless supply of questions is too much for this gal to process. Keep things short and sweet, please.

Those of you who have joined my posse or who are still here…

You are EFFIN AWESOME!!!

 

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A New Book, A New Day

Sometimes you just gotta go all out and put two sugars in your coffee.

I adore warm silky, smooth coffee. Today my fan favorite is Hair Bender by PDX company Stumptown. It tis divine! I don’t add sugar to this brewed blend of tasty goodness, but I do add lots, lots, and more lots of half and half. It keeps me going through most of my AM.

This week it was suggested I listen to an Oregon Public Broadcast (OPB) radio interview with Sallie Tisdale. From my perspective this interview was good. The topic, a little sad, was still worth broadcasting on my iPhone. A 50-minute segment took me 2-days to get through. Did I mention this was a tough interview for me to listen to?

Portland author Sallie Tisdale spoke about her recent book, “Advice For Future Corpses (And Those Who Love Them”. I encourage you, a friend, a parent, a child, a sibling or an individual who wants to spend 50-minutes of your valuable time to listen.

FYI – coffee with sugar just might help you get through it all.

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What is next?

I managed to finish up my brain zaps on Halloween. Whew! Thank goodness it is over. I was oddly able to sound the jumbo bell that announces I’m done (for now) with a nurse escort. Thank you to everyone who played a part!

Two parts done and only infusions & images left to cross off my list..for now. Plus you know that other “stuff that is on my temporary schedule”.  Eye exams, learning how to swallow again (yes, that again. Resorting my pants drawer and where to hang my hats?  Darn those delightful kick-butt hats!  Love them and hate them. Now where to put them?

My awesome sweetheart is testing my patience, again.  Is it from all the brain activity I’ve had over the last few weeks making me feel very  vulnerable?  My mega doses of sleep I have been getting/not getting? Who really knows which one or which grouping? I know I’m beat up for endless reasons.  Frustrating galore! Very frustrating actually.

Today, I am casually parked at my small kitchen table.  Ready to encounter most casual easy-peasy things that come my way.  Simple is key.

I’am slowly recovering from my 2nd Keytruda infusion last week.  “Ugh” to put it lightly. i’m moving around…a little.  I am smiling, hoping that this gunk is going to work.  Time will tell.

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That Annoying Stamp

one oncologist doctor of mine places a stamp on my schedule that says “Tentative Schedule Only”.  Frustrating? You bet cha! I’m not sure how many times my schedule has changed in the last few days. So far, it feels countless. Why can’t they wait until things are firmed up before I end up with it? I hear that Monday I will get a final schedule. That will be nice or I will scream with all my might, WTF!?!?

A few significant moments have taken place over the last few weeks.

Roughly 30 staples were plucked from my brains left side wound. Kind of icky if you ask me.

I made it through my 3rd brain mold making.  Another grand moment.

I hope Monday all SW’s and my questions get answered to our satisfaction before radiation begins later in the week. Pretty, pretty, please to whoever is listening…

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My October 2018

October is one of my favorite months. I get to wear warm clothes, have shiny lip gloss, enjoy easy teen reader books in my Ikea lounge chair and to make it even a smidge better, I now get to indulge on grapefruit! Yep, gobble down on grapefruit! One of my all-time favorite fruits that had been cast aside for the last, way too many years, like 7.  No fun at all!

This October things are changing – I would say Big Time. Just before SW and I celebrated our 11th wedding anniversary I was getting discharged from a hospital approximately an hour away. I’d like to say I left after a simple meeting with my brain surgeon, Dr Ciporen, but nope. I left after he performed surgery on the left side of my monster brain full of toxic gunk that needed to be removed.

For countless days before surgery my head hurt. Hurt-hurt actually. I so badly wanted it to just go away, but nope, it got worse. I was upset. Mad at most everything I looked at, myself included. I could not escape the phrase, what did I do? Severe depression kicked in. Why does this garbage happen to me? I thought I was a good person. Ready to turn in my towel, I was DONE! I struggled with uncontrollable brain swelling. I could not focus on where it hurt to tell anyone. Names, memories, friends, walking, etcetera all seemed like foreign topics. I’d watch a movie or television program and not understand what was going on. Nothing made sense. My entire body hurt from unexplainable stress. The reasons why did not seem to matter. I was stuck at home, alone, settling in to die.

Two semi-options stood out. 1- investigate a clinical trial offered by my neuro-oncologist and 2 research Death with Dignity (DWD). Neither option sounded good.

My left-side brain swelling was alarmingly close to things I considered critical. Removing the infected tumor could/might impact my speech, memories, friends and family…me. Would it be worth fracturing these things? To qualify for the DWD medication it would require a prognosis of less than 6-months to live, which I’m not ready to be there yet.

Trembling, I chose to move forward with the clinical trial offered by my neuro-oncologist. So now my October looks like this:

  • Monday, 10/1 approximately 30 staples will be yanked out of my left-side hairline (forehead to ear).  Lucky me!
  • Tuesday, 10/2 my radiation oncologist will be making a mold of my head for radiation.
  • Thursday, 10/4: I will have a brain MRI to plan my brain radiation.
  • Monday 10/8 – 12 is set aside for multi-days of brain zapping. Zap! Zap! Zap!
  • Tuesday, 10/16 appointment with medical oncologist Jeremy Cetnar. I hope I can walk still.
  • Wednesday 10/17 +18 MRIs – multiple brain scans to see how treatment is going.
  • Friday, 10/19 first infusion of Keytruda is scheduled.

I do hope that recovery allows me to celebrate Halloween and Day of the Dead.  Favorite Days of mine!!!

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Hello?

Does this Blog-thing still work?  I hope so because my mixed up brain parts are ramping up to write again.

Dear Cancer Friends please help me by reading and posting comments.

Kimmywink

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More Tired Than Tired

These days I really like being home. Five days away from home, I missed my bed. I like the fragrance left behind by my scented candles and soft sounds my cat makes at each inhale and exhale as he sleeps. It all seems so innocent and inviting. I wish I could enter my cats world of warm snuggles. Today, I can’t. I have two days of evening MRI scans that will  start tonight if our citywide dusting of snow doesn’t interrupt things. Please don’t snow more!

IMG_8763

Yesterday was my usual every 4-week, longish-day at my cancer care center. At our last appointment for the day, with my social worker, SW added his 2 cents, “We’re tired. Kim has been here listening and talking to her doctors every 4-weeks for almost 6 years. Wouldn’t you be tired of that too?”

He is right. I have treatment fatigue.

 

 

Update: As I was finishing this post, I got a call and my MRIs have been rescheduled due to snow.

 

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