Keep going, part II

Keep Going

Two years ago today, I was spending the day at The James Cancer hospital undergoing preadmission testing and counseling for my upcoming stem cell transplant. It looked like this. 

Today, I'm heading in to Salt Lake City in the midst of my ski vacation after skiing more than 30 miles over 3 days on intermediate and expert trails (blues and blacks) and taking a bobsled ride at the Park City Olympic track.

Here's what my last few days have looked like. 

And here's a link to a video I made of one  our mornings of skiing. 

https://vimeo.com/122426247

For anyone going through a tough time, whether it's physical or emotional, go with confidence and hope toward the future. As Winston Churchill said, "If you're going through hell, keep going."

What other choice do we have?

For whom do I cry....

I've had a really rough time the last few days.  A dear friend who was diagnosed with metastatic melanoma at the end of January has been in the ICU of The James since last Friday.  Her husband has been told that the cancer is really aggressive and she now has only hours or days to live.  Just last Thursday, she was planning on going with me to a talk by the CEO of The James but had to cancel at the last minute because she wasn't feeling well.

I visited her yesterday and today.  I watched her gentle, loving husband (who reminds me a lot of Al), stroke her hand and her hair, talking to her about a trip to Ireland they want to take and the ballroom dancing lessons they'll take when she's recovered.  I see him start to choke up and then recover so he can support her.  I watched her daughter sit by her bed holding her mom's hand and talk about memories and plans.

It was so heart and gut wrenching.  And when I see that, sometimes it's hard for me to really be honest about who I'm crying for.  My heart aches for my friend and her family...but it's also a quick jump to replace her and her family with me and my family.  It's such a bad place to be, at such a bad time to be there.

Please pray for both of us.

(Oh, and today is the second anniversary of my first chemo treatment.)

My Prognosis...

Survey says....

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Please participate if you or a loved one has been diagnosed with Amyloidosis.


https://www.surveymonkey.com/s/S7BD2G5

Clawing through Concrete

Maintaining a consistent state of mental and emotional balance is the real battle for me that has lasted much longer than the physical one.  So many minor things can knock me off balance.

As I researched and learned more about the disease early on, I was on a quest for a number of months....how long did I have left?  I wrote about it here, The Real Slim Shady & Multiple Myeloma just about one year ago.  I was able to let that thinking go and move on to living my life without obsessing about it....most of the time.

Occasionally, I'll go down a rabbit hole and the thinking goes something like this... 

living 10 years with this disease is pretty good.  That's 120 months.  You've already burned through about 20 of those.  You better hurry up and share that wisdom with your daughters, or get that retirement account in better shape (for Alan to use because God knows I won't use it), or insert whatever random thought of the future is bothering me.

It's like a New Year's Eve countdown clock just pops up in front of me sending me into a tailspin.

The other thing that sends me down that rabbit hole is when I notice something physically that makes me think my recovery is at risk--my liver feels enlarged, my kidney hurts, my stomach is distended.  The thoughts at that point go....

you've worked so hard to get yourself back into shape and now it's all for nothing.  You're getting sick again and soon your physical strength will be gone.  And you'll have to do that work all over again....if you can do it.

Getting out of this feels like I'm clawing through concrete.  My tenuous fingernail hold on mental and emotional strength slips and I have to claw my way back to regain the hold and enjoy my life.  It's an exhausting process.  And there aren't that many people who can relate to it.

I think back to the time before I was sick and compare it to how I feel now, always around people but separate in my struggle.  This excerpt, from The Journey of the Magi by TS Eliot that the assistant rector at my church shared on Sunday as she prepares to take on a new assignment, captures some of the feeling--

All this was a long time ago, I remember,
And I would do it again, but set down
This set down
This: were we led all that way for
Birth or Death? There was a Birth, certainly
We had evidence and no doubt. I had seen birth and death,
But had thought they were different; this Birth was
Hard and bitter agony for us, like Death, our death.
We returned to our places, these Kingdoms,
But no longer at ease here, in the old dispensation,
With an alien people clutching their gods.

Living this way with this knowledge, this recognition of the scarcity of time and uncertainty of the future could be a blessing. I tell myself it is and try to live accordingly. But occasionally, doubts creep in, and I wonder if I'm lying to myself. 

Hey look it's me!

The winter newsletter of the Amyloidosis Foundation featured my story.

You can read it here.  https://origin.library.constantcontact.com/download/get/file/1103817697559-49/Dec_2014_newsletterfinal.pdf