Juxtaposition

Juxtaposition—the fact of two things being seen or placed close together with contrasting effect.

I’ve spent the last week on vacation in Mt. Shasta, California with my husband and our youngest daughter.  We rented a little cottage and spent our time hiking and white water rafting through some beautiful scenery.  As you'll read below, I spent a lot of time thinking about some things...some of them a little heavy.  But don't worry, it didn't spoil my vacation.  I'm pretty sure Alan and Claire had no idea of what I was wrestling with mentally and emotionally.  I've gotten pretty good at the skill I call "active ignorance" (the act of ignoring something that I don't want to think about).  You can see the fun from the vacation here--Kat's Vacation Pics 

I’ve had a lot of time to think and there have been a few contrasts that I’ve been turning over in my mind:

•       Choosing to live out of a backpack or having to live out of a backpack

•       Consuming resources or preserving them

•       Relying on science or trusting in God.

Choosing to live out or a backpack or having to live out of a backpack

We were staying very close to the Pacific Crest Trail so we encountered several people who were hiking the trail.  It appeared that some had made a choice to spend time on the trail.  We met a woman at the market in Castella who was transferring her possessions to a new lightweight backpack she had just taken out of the shipping box.  She said she was spending a few months hiking the Pacific Crest Trail.  Al, Claire and I talked about the woman and others we’ve known who have taken time from their “normal life” to go on extended hikes. 

There were others we encountered who appeared to have fewer options when it came to their backpack—not just the option of getting a new one but having the option to leave it behind.  I told Claire after one particularly rough looking guy passed us with his backpack, “There’s a big difference in the life you’re leading whether you choose to live out of a backpack or you have to live out of a backpack.” 

Consuming resources or preserving them

The first full day we were in Mt. Shasta, we drove up to Ashland, Oregon to go white water rafting on the Upper Klamath River.  It had 40+ named rapids with many being class III-IV+.  During the trip, the guide offered to let someone “ride the bull” through some rapids…that’s sit with your legs over the bow of the raft holding on to a rope. 

Now, in my “before” I would have been the first to do that.  If there were an option for adventure and adrenalin, I’d go for it.  But now, in the “after”, I have this thought of how hard I’ve worked to regain my strength and how I want to protect my health and strength—the choice to preserve and not fully consume.  It's just like any other finite resource--money, time, fuel....life.  I told Al and Claire that so many people have invested in my recovery—my family, medical team, church family and friends—that I don’t want to do seemingly silly things that might put that health and strength at risk. 

If I were a corporation, I’ve gone from a sole proprietorship to a public company.  I almost feel a need to hold a proxy vote before I make any decisions that could put my health and strength at risk.  Plus, there’s always this little voice that says, “How will you explain this to Yvonne?” (my oncologist) if I get seriously hurt.  It’s a tough question for those of us who’ve worked hard to recover from treatment and enjoy our remission but who face a likely relapse….”Do you consume or preserve the precious amount of life that’s left?”

Relying on science or trusting in God

I was perusing Twitter while we were waiting for our flight out of Columbus at the start of our vacation.  One of the Mayo oncologists I follow, Dr, Vincent Rajkumar, tweeted out a link to a study recently published by Mayo.  Reading those studies can be an emotional crapshoot leading to vastly different places—filled with hope or fear.  Unfortunately, this one led to the latter.

The study was the first long term retrospective on the role of chromosomal abnormalities in overall survival of AL Amyloidosis patients.  I’ll save all the discussion of factors, sample sizes and p values and cut to the chase.  Bottom line, it found that folks with my chromosomal abnormality—a translocation of the 11th and 14th chromosomes—and my level of plasma cells in their bone marrow (<= 10% I was 10% and 7% depending on whether you consider the core or aspirate sample) had a median overall survival of 53 months compared to “not reached”...meaning the folks who met this criteria (me) died after 53 months on average and those who didn't have these features were still alive.  I've always taken comfort in the fact that my heart has never shown evidence of amyloid infiltration and because of that, have been able to dismiss a lot of the bad news found in the studies.  But this statement in this study totally undermined that confidence.  "abnormal cIg-FISH had a negative prognostic impact independent of NT-proBNP and other adverse features on multivariate analysis. Even high-dose chemotherapy with stem cell support did not abrogate the risk imparted by abnormal FISH."  So, even if you don't have heart involvelment (as measured by NT-proBNP) and you have a stem cell transplant, this criteria still impacts overall survival.  You can read all the gory details here-- Abnormal FISH in patients with immunoglobulin light chain amyloidosis is a risk factor for cardiac involvement and for death

So...53 months.  I’m 29 months in when the median overall survival is 53 months.  I retweeted the study with an admittedly melodramatic comment and Dr. Rajkumar was gracious enough to reply in an attempt to talk me off the ledge.

So, Dr. Rajkumar says my expected survival is longer….6 months, 6 years?  Either of those numbers is less than I’d like.  I’ve always said a 30-year remission is as good as a cure for me. I know a woman whose disease course has been very similar to mine so far and she's 20 years out.  But 53 months is decidedly less than the 360, or even 240,  I’m hoping for.   What now?

It seems with all of these juxtapositions, it’s not a question of “or”, it’s a question of “and”.   I can choose to fully consume my life while being smart about preserving it.  I’m able to live my life more fully than many my age who have never been sick and I can certainly consume more than many Amyloidosis patients I know.  And, whether I'm choosing or having to live out of a backpack, well at least I'm alive.

I can rely on the science to understand the challenges and risks ahead but I will trust in God to guide me through them.  He’s gotten me through everything so far.  As my friend John says, we're curve-busters. He's gone through 2 stem cell transplants, a few rounds of chemo and radiation in his fight with Multiple Myeloma so he speaks from experience. And, if my time is less than I’d like and I can’t do the things I’m hoping to do—guide my daughters as they become adults and build their families, dote on some grandkids, spend some time in retirement with Alan—then I have to trust that God will provide for the love and nurturing that I can’t.

So I trust in God AND I also ride my bike to raise money for cancer research…hoping it will help me, knowing it will help someone.

For in hope we were saved. Now hope that is seen is not hope. For who hopes for what is seen?  But if we hope for what we do not see, we wait for it with patience.

--Romans 8:24-25