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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Another Birthday is Here!

In a few days I’ll be that huge number 41. That big-ole number I never thought I’d achieve. At the same time it’s a small little number that looks a little lonely, like it needs a friend. Maybe a buddy? I’m not sure.

“Forty” needed a big celebration with friends and “Forty-one” a celebration with my sweetheart. Quite the opposite of last year, not on a level of importance. This girl, who made it through 365 days of 2017 is a wonder or perhaps a bit of a mess – a chaotic one. Feeling like a crazed teenager on a TV program. Or really, more likely a novel, where you don’t understand or know what is going on. Until those last 40 pages, where you are left wondering does that really happen? No way! In my world, it could.

Somehow I got through it, I did it with countless bumps and bruises. An unknown number of steroids working in my brain; partnered with my anti-cancer medication Lorlatinib. The jury is still out, investigating who was more detrimental to me. I cannot forget how I treated Spencer during much of the time. It is embarrassing – closing my eyes; seeing the snippets that remain. How could I do some of that stuff? It makes me feel ill in my tummy, but not cancer sick, more like how could I be that way sick? I might just be a fruit-loop like my former lovers claim.

I’m not at all sure where this quote came from. I reconnected with it in one of my writing pads a few days ago – I’m a fan. “Be brilliant in every way possible!” Okay, I’ll do that. Maybe many of us should. I am pretty certain I can come up with a few people who should.

You too?

I intend to carry that quote, message, or whatever you want to call it, with me as I pass through the next few days.

Be brilliant in every way possible.

Be brilliant in every way possible.

Be brilliant in every way possible.

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Happy Happy, Joy Joy!

I about crumpled over, MRI and CT scan results were exactly what I needed to hear.  My NSCLC is managed!

My itty-bitty dose of Lorlatinib (75mg daily) with one smidgen of Dexamethasone (2mg daily) is working in my loopy body.

Yea for madness!

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November 24th – Black Friday

Sunlight is poking through. Just a tiny bit. kim bug

It seems to mimmic my little load of laundry in the wash. Shifting gently back and forth in the suds.

Next week this cycle could end.

Relief. Maybe?

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Bumpy But Lovely!

Today, walking my street to sniff fragrant rose blooms was such a delight. The sun was nicely shaded by either clouds or very tall street trees. At every encounter with a rose I would pause to smell it. Every so often, I’d stumble upon a special bloom that felt twice as fragrant. I would hesitate a little longer, breathe in a little deeper to allow myself a bit more time to infuse my senses. Completely delicious!

This summer seems more precious to me than others. I’m not sure why. I am looking forward to seeing just where it takes me.

Today is day 20 for Lorlatinib. Sure, it’s been a bumpy road so far, but aren’t all of them?

 

 

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June? Oh Sugar!

IMG_6987“Hello?  Are you there?”

It’s been a while. Feels a little awkward. Like calling back that friend you have neglected the last several days that have turned into weeks. What will I say?  What is the reason for my behavior? I don’t necessarily need to address why, but it would be kind to state.

I’ve been up to very little. Energy is holding steady at a medium low; my activities reflect that.

Next week my 42-month relationship with alectinib will end. Without skipping a beat I will get to discover in’s and out’s of Pfeizer’s lorilatinib (aka PF 06463922).

Today, I sit unsure how things will go over the next few weeks. I do know for certain, if I need help, I will ask for it. I don’t have a need to go it alone.

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Best Worst News of My Day

Image-1-3“What, no honey mustard? Well that’s the worst thing I’ve heard all day!” I said while laughing to the extremely hip woman taking my order. Nodding her head in agreement she responded with something along the lines of – it is a bummer I know. Would you like ranch, an Italian vinaigrette… when I cut her off and requested blue cheese dressing please.

Sitting across from SW I continued to giggle, rather loudly. I couldn’t get over how funny this really was. A close to home brew pub – out of my most desired salad dressing was the worst thing I was told all day. Days later still cracks me up.

Not having a particular kind of salad dressing is no crime. It’s not worth crying over. Certainly not going to change my opinion of this pub. Knowing after one appointment with a medical specialist and one phone conversation with another medical specialist that my biggest upset of the day was salad dressing.

Oh, please universe, let me have more days like this.

 

 

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