Two truths

In my heart, I've always believed two truths.  Time and time again, circumstances always confirm to me that--

1. God is good
2. People are good

As I deal with my journey into this illness, those truths are confirmed over and over again.  I look at the path that lead to my diagnosis and see so many points on the way that I could have chosen a path that would have delayed the diagnosis...but I didn't.  And I know that happened because God is good.

So many people have come forward during this time to express their love, concern and support that its really been overwhelming.  It brings me to tears sometimes just thinking about it (which, of course, irritates Claire, "Why are you crying if its a good thing"?)  You expect your family, close friends, church family and close work associates to reach out.  But I have had so many people offer to help, tell me they'll pray, cheer me up and cheer me on, tell me they know I'll beat it.  I feel like Sally Field at the Academy Awards, "You like me! Right now, you like me!"

I was talking with one of my friends at work about this phenomenon and how the news is filled with stories that give the impression that people are bad.  I think that comes from the fact that we live such self-reliant lives that people don't have an opportunity to show their goodness.  So all we see are stories of bad.  A silver lining of my health issues is that it gives people a chance to show they care....and that's good for them and its good for me.

Thanks to all of you who have been so caring and supportive.  You have no idea how much it helps.

My Rep

From my friend Erin. Quite fitting!

Great is Thy Faithfulness

Musical theme of the day....

Pardon for sin and a peace that endureth,
Thy own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside! 

“Great is Thy faithfulness!” “Great is Thy faithfulness!“
  Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
    “Great is Thy faithfulness,” Lord, unto me!

Medical Hope--Extended Edition

So, after 7 hours at the hospital, 16 x-rays, 11 tubes of blood and one bone marrow biopsy, the information my hematologist/oncologist needs to develop my treatment plan is working its way to the radiologist and  pathologist so we can review a plan next week.  Dr. Efebera is a confident, energetic practitioner who is obviously jazzed about her specialty.  I love that kind of professional...whether your thing is customer analytics or B-cell lymphoid malignancies, I respect folks who know their stuff, can explain it well and answer questions with depth and confidence.

The bone marrow biopsy was pretty painful but not as bad as the nurse practitioner made it sound.  She said that when she was withdrawing the liquid, I would experience "10-15 seconds of toe-curling pain."  I only curled my fingers and even though she told me it was ok to unleash whatever language that would help me, the worst it got was a steady stream of "owie, owie, owie."  So badass!

I'm working on a poem entitled "Ode to a Bone Marrow Biopsy"  What I've got so far is
I got a hole in my pelvis,
can't shake my hips like Elvis.
It hurts down in my marrow and
I'm stiff like a scarecrow.

Look out Maya Angelou!

Its been great to have words of encouragement and humor from my friends.  Ali asked me if I would need Amy or Claire to donate stem cells and I told her that they would come from me because "I don't want any hand-me-down stem cells anyway."  She said, "Yeah, those two are only half-perfect so their stem cells would probably be sub-par anyway."

My sister-in-law Karen was telling her sons about my situation and Spencer became very concerned. She told him "you know she is the strongest person I know!" Spencer said, "Yeah, she could win Wipeout!"

The other night when I was crying, Claire was mimicing my gentle, nurturing style by telling me there's no reason for me to cry and I need to trust the doctors to figure this out.  Thinking perhaps she didn't understand how serious amyloidosis is, I said, "You do realize people die from this".  She said with total certainty, "Yeah, people do, but you won't."  Love that kid's confidence.

Right now, if things go as planned, I will have chemo and stem cell transplant in early April requiring a 3-5 week hospital stay.  My friend Allyn said she could see me doing OK with that if I'm feeling poorly the whole time but she thought I might have issues being in the hospital that long if I'm feeling OK.  I'm looking at the hospital stay as a reset---reset my bone marrow, reset my focus, reset my attitude.  I'm going to try to be fully in the moment and catch up on movies, books, praying, contemplation, writing, yoga....all sorts of things to fill the moments.  How many times in your working adult life do you have an opportunity to have NO responsibilities or obligations for 4 weeks?  Granted, I'd prefer to have the chance without the illness, perhaps while touring Italy and Greece but I'll have to make the best of it on the 3rd floor of the James Cancer Center.

They have wi-fi in the unit so I can Facetime with friends and Karen said she'd come in and we could watch movies and do crafts.  I'm hoping to have lots of friends and family come and hang out...it just has to be two at a time.  My doctor said I would lose my hair from the chemo so maybe I can have some tattoo markers and have a competition to see who can draw the coolest design on my head.  I was thinking about getting a tattoo on my  head under where my hair will grow back so you can only see it during recovery from my chemo.  Maybe the winning design will become the tattoo.

But, I'm getting ahead of myself...I need to have a cardiac MRI on 3/19 to confirm there is no heart damage and have the nephrologist confirm there is no kidney damage.  My doctor said that looking at my lab results there is no evidence of damage to my heart, liver or kidneys but we have to confirm.  Next, its skiing for a week in Steamboat with Al, Claire, Amy, Sean, Deena and Gregg the last week of March then the Fleetwood Mac concert on April 4 with Al, Amy, Sean, Allyn and Jasper.

After that, its time for me and Dr. Yvonne Efebera, with an assist from Al, Amy, Claire and all my friends and family, to kick some amyloid ass!

Medical Hope

Quick update...good prognosis from doctor that all treatment options are available. Need to have cardiac MRI to confirm no heart damage but she said she'd be surprised based on lab values. Talking about stem cell transplant which is the current treatment with the best outcome.

Appt with her next Thursday to discuss treatment plan. Prayers/positive vibes are working. Keep em coming!!

Real hope

This morning's reading and reflection from Day by Day is such a great message for me. I'll have to keep that image of a sunrise over the ocean as hope. I've been on the beach watching the sunrise over the ocean more times than I can count.

http://prayer.forwardmovement.org/forward_day_by_day.php?d=28&m=2&y=2013

Psalm 71. You are my hope, O Lord GOD.

If you have strolled at sunrise on an eastward-facing beach, perhaps you saw sunlight reflected in blinding brilliance across water. Your eyes could accept only shielded glimpses, and from wherever you glanced, the glorious path on the water followed, as if your vision drew the light toward you. Biblical hope is like that.

In contrast, our use of “hope” is a four-watt night-light. If you say, “I hope it doesn't rain,” the fulfillment is “iffy.” Hope in God is not. Ordinary hope is no match for the hope attached to our unchanging God, so the psalmist wrote with confidence, “You are my hope.”

In the New Testament, Christ is hope’s focus. Christ-centered hope cannot disappoint because its certainty is rooted in the cross (Romans 5). This hope gives life, so that Jesus could declare “Anyone who believes…has passed from death into life” (John 5:24). Hope for today and for the future, hope already assured in the past event at Calvary, hope in the Risen Christ!

We walk together, hope shining on the Lenten path, grounded in the history of the cross. I do hope that it doesn't rain on Easter, but no temporary storm can deny Easter’s dawn. The day will come. In sure hope, get ready to say, “Indeed, He is risen!”

Dress for Success

I was thinking about the appointment tomorrow with the hematologist/oncologist and I was contemplating what I should wear.  I'm not going into my office so I can wear whatever I want.  I thought about how at times in the past, I would carefully pick an outfit to wear to work if I had an important meeting.  "What impression do I want to give?  What's the best outfit for that?"

Do I show up tomorrow looking meek and needy sending a message of  "save me" or do I look prepared and ready saying "let's roll"?  You know I have to go with prepared and ready.

Its interesting to think about the clothing choice I would make for a meeting at work where my professional success may be on the line.  How do you dress for success for your first meeting with someone whom you hope will save your life?

Makes me think of this passage from one my favorite songs by Caedmon's Call "Faith My Eyes"--

But I get turned around
I mistake some happiness for blessing
But I'm blessed as the poor
Still I judge success by how I'm dressing 

So keep'em coming these lines on the road
And keep me responsible be it a light or heavy load
And keep me guessing with these blessings in disguise
And I'll walk with grace my feet and faith my eyes 

So whatever happens tomorrow, may I walk with grace my feet and faith my eyes.