Some Space

photo-99I now have some space between the tops of my shoulders and the bottoms of my ears. Finding out that my trial drug (alectinib) is shrinking my brain tumors was the news I needed.  I’m thrilled to say the least.  The lung and adrenal are also still stable.

I dream that the brain tumors will continue to shrink before I hit a plateau.  A girl should always dream!

I celebrated by shop-vac-ing the dried leaves out of the window wells.  Fun! Fun! Fun! I know I’m not the only person who does this, right?

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Moving Through

I’m the kind of girl who likes to know where I stand at all times.  I’m often most uncomfortable when I don’t know what I think or feel on a particular topic or subject. Lately, I’ve been stuck in who-knows land.

My mind feels scattered.  Sorting thoughts.  Resorting thoughts.  Distracting myself with cooking, baking, yard work, and the “typical Kim go-to” cleaning and organizing.

What has me in a tizzy is the loss of my sweet, sweet friend Jessica.  Clearly, she’s had an impact on many of us with lung cancer from the number of bloggers that have already written about her.

Jessica to me was a dear friend.  For knowing each other for just over a year our connection was unmatched; saying we clicked would be an understatement.  She and I had a number of things in common; our love for zippy cars, snuggling our pets, Woot t-shirts, TV shopping, being informed about our disease, dreading dress shopping, control freaks, etc… We met online and thanks to Lungevity we were able to meet in person on two separate occasions.  Living on opposite sides of the US, we primarily communicated over email and text messages.  For a majority of our relationship we communicated daily.

Processing Jessica’s passing, on March 28th, has been particularly hard on me for many reasons.  She is the first person with cancer I’ve really let in to my heart since Kurt passed away, in August of 2012.  I suppose I was trying to protect myself.  Watching someone, like Jessica, pass is like looking in a mirror at my own death.  Sure, it’s not happening at the same moment in time but it will one day and chances are good it will look pretty similar.  (Unless the damn bus that keeps running over people comes my way.)

I hope soon I can move through this great loss of mine.

I wish the family and friends of Jessica Rice and Kurt Shull courage to continue living through their loss as well.

Cancer sucks.

 

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Standing… Comfortably

Yay for Friday!  Double yay-yay for being vertical without a pounding headache!

photo-96I’ve been busy making these cute little felted wool nests while laying in bed.  It’s been fun…but…

…but now I’m ready to get back to my other stationary, yet standing, hobby of making stained glass art pieces.  Today, I will call this restoration piece complete!

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Stabbed in the Back

Last week I went to my Thursday set of OHSU appointments wearing my Bite Me t-shirt (tourist T from my last Hawaii trip).  I thought it fitting considering I was checking in for a long day at 8:15 am and had not eaten since the evening before.  My shirt was more of a warning for those around me, as in most women, when I’m hungry, I’m cranky.

This was my last uber-busy day for a few weeks. I knew it was going to be draining.  The greatest difference from the prior 3 weekly appointments was this time a lumbar puncture would take place.

The lumbar puncture was done to take a sample of my spinal fluid.  My fluid will then be tested to see how much of RO5424802 is in that fluid.  In a perfect world, lots of little drug parts will show up in the fluid.  Hitching a ride in this fluid is how this drug reaches the brain.  Once in the brain, hopefully it can stop all the tumors up there from growing.

The puncture itself was not painful.  Laying flat for nearly 2-hours after the procedure was a challenge.  I was on a strict schedule to eat and take drugs.  Why? Because I would need to report back to oncology to do 4-hour, post drug dose labs.  Eating would get this process started.  I managed to semi-neatly eat my so delicious yogurt; eating my granola was very messy.

ktmAll eventually worked out.  I was able to be taken home around 5:00pm by my sweet friend Tracy, who was with me every step of the day.

The days following it were another story.  I had/have some severe headaches when I transition from horizontal to vertical.  I’ve been downing the tylenol which seems to help a little.  Oddly, I feel better in the evening, not-so-much in the morning.  I’m back to needle felting and watching netflix in bed.  I anticipate being fully recovered by the weekend.  Looking forward to that.

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Great Explanation

Yesterday, I watched a great video of lung cancer expert, Dr Ross Camidge at University of Colorado.  I was referred to this video from two different blogs I read Gray Connections and A Lil Lytnin’ Around the World.  After watching the video a second time with my husband I decided it was worthy of being posted here too.

The 14 or so minute video explains well where molecular oncology is today, specifically for my ALK+ NSCLC.  In this video Dr Ross Camidge, one of the movers and shakers in the field, explains things in a way us non-experts can understand.

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Side Effects – After One Week

I started taking RO5424802 Thursday, February 27th, slightly over one-week ago. People have been inquiring about side effects.  Are you ready for this? Here goes…

So far I’ve been experiencing:photo-93

None.

Nada.

Zilch.

Zero.

I’ll find out in a few months if this magic pill is working.

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…And Another One Gone…

My recently appointed medical oncologist announced he will be moving out of Oregon. I’m sure Dr L-C will be happier living in a less wet and grey part of the world.  But…what about me?  This will be my 4th medical oncologist since diagnosis in May 2011.  Poor me.

I’m not too sure who my next one will be, the name has escaped me.  I have no intention of leaving my care center or my trial because of this change.  I’m sure who ever I get, I’ll have them whipped into shape quickly.

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Marching Along

The trial has begun!  I feel much satisfaction knowing that I’m on a drug that has the potential to work in both body and brain.  Will it work in mine?  Yes!  How long? Forever!

I’m pretty certain my expectations are a tad high.  I’m fine with that.  Isn’t there some kind of saying about shooting for the moon and accepting landing on a star?  That’s what I’m doing.

Go go gadget RO5424802!

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Ahhh…Much better

Thank you Last Week for finally coming to an end! The final day did end on an upward note.

My difficulties with OHSU and my written testimony got completely straightened out. Apparently it was a big-fat-misunderstanding a new employee had between editing employee documents and patient documents. OK. Like my lovely Blue Q socks say, “screwing up is part of the program.” It does happen; even to the best of us.

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The stress caused by when am I going to move to the trial? is finally over. I’m going to OHSU tomorrow to get my I’s dotted and my T’s crossed to get things going on the trial. My anticipated start date is Tuesday, February 25th. The official trial title is: A Phase 1/2 Study of the ALK Inhibitor CH5424802/RO5424802 in Patients with ALK-Rearranged Non-Small Cell Lung Cancer Previously Treated with Crizotinib. I’m happy to get on a treatment that might actually stop my pesky growing brain spots. (Criz, don’t get me wrong, you were great for those 29-months!)

Now, it is time to eat enormous amounts of grapefruit during this drug-hiatus!

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Irkiness-er

A handful of days ago I was asked by OHSU to testify at the Oregon State Legislature.  Well, that request morphed into something very different.  I still said I would help them by providing written testimony in favor of a request to sell bonds to fund a Capital Construction project.  I submitted my signed one-page written piece yesterday.

I was quite shocked when the OHSU representative wanted to make corrections to my signed document.  Corrections?  A few email exchanges later I learned that I do not follow the APA Formatting and Style Guide among other things – like my inappropriate use of dashes.  I wanted to scream Are you serious?

I refused to make the changes.

I’m left quite bothered by this.  I know that this person from OHSU did not want to change my content, per se.  But, they wanted to change my voice.  When you ask for a patients perspective that is what you are going to get.  I can’t help but wonder what other patient perspectives they have corrected and to what extent?

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