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. 

Next Steps

The next steps have changed from my first post about this. I have an appointment tomorrow with Dr. Yvonne Efebera the hematologist/oncologist at OSU who was the Chief Fellow in Hematology Oncology at Boston University Medical Center which is recognized as an international leader in amyloidosis treatment.

I have an echocardiogram scheduled next Wednesday to see if there is any heart damage from the amyloidosis.  Please pray that there isn't any because, from what I read (and I'm really trying hard to to read too much), that is one of the reasons I wouldn't be considered a candidate for some of the more aggressive...and effective...treatment options like stem cell transplantation.

Have an appt next Monday with a nephrologist at OSU--Dr. Samir Parikh.


Currently, no biopsies scheduled.

So, the list of medical specialties I will have seen or has worked on my case after Monday--
Internist
Hepatologist
Gastroenterologist
Hematologist
Nephrologist
Pathologist
Radiologist

And I have an appointment scheduled with an Endocrinologist in April.

Its like the medical version of the World of Beers tour at the Winking Lizard.  Hopefully I get the Golden Phlebotomy Tube trophy at the end.

I'll report back after the appointment tomorrow.

Tig Notaro

No, its not another rare disease, that's the name of a comedian whose stand-up routine performed 3 days after receiving a breast cancer diagnosis and one month after her mother died is really helping me through this time.  You can buy the 30-minute set from iTunes here its a little edgy but its worth the $4.99 as you hear her come to terms with what's going on in her life in front of an audience.  This snippet really resonates with me...

"It Is Well With My Soul"

During my centering prayer this morning, Jesus told me, "Don't worry, I got this."  Not in those exact words but as I tried to characterize the feeling I came away with, that's it.  And all morning, I've been humming this hymn "It Is Well With My Soul".

Appointment with hematologist who specializes in Amyloidosis on Thursday at 8 AM.

C'mon, sing along with me!

Relaxin' in the Amyloid Oasis

As many of you know, I've been dealing with some really weird health issues since October.  Just a collection of odd symptoms including an enlarged liver.  For 2 months my internist told me that there was nothing wrong with me..."You're a tall woman and tall people can have larger organs."  I called it big lady, big liver syndrome.  When I went to her about problems with edema I'd been having, she told me that I should watch my salt intake.."There's a lot of hidden salt in things like Lean Cuisine."  Of course, she never ASKED if I actually ate stuff like that.  Anyway....

Thankfully, I got an appointment on New Years Eve with an angel named Connie Coburn, a nurse practitioner at OSU who actually believed me when I said something was wrong.

Well, after 33 blood tests since the start of the year, a liver MRI and an upper endoscopy, it turns out I have a rare blood disorder called Primary Amyloidosis.  Only about 3,000 new cases are diagnosed in the US every year. Basically, from what I understand, my bone marrow is soooo incredibly awesome that its producing antibodies that my body cannot break down.  Sounds great, right???  Super-duper, everlasting antibodies ready to protect me at a moment's notice???  Yeah, not so much.  Since my body can't break them down, they collect in my tissues potentially causing damage to heart, kidneys, liver, spleen, nerves, intestines, skin, tongue and blood vessels.  No mention of lions and tigers and bears but plenty of "oh my!"

My doctor, Dr. Edward Levin, who is equal parts saint and scientist, says the next steps are to have biopsies of my liver and kidneys...not to look for cancer but to take tissue samples to see how much damage there may be...and to complete an echocardiogram to see if there is any heart damage.  According to the amyloidosis website, the next step after that is to undergo treatment to stop the production of the antibodies, perhaps through chemo and stem cell transplantation.  The link shows a sample calendar of how the 5-week process will go calling out activities like "catheter placement" and "psychiatrist visit".  It says the process takes 5 weeks but can take up to 8 depending on how well the patient tolerates the treatment.  I told Al, "My goal is to be done in 4!"  :)

When I first typed amyloidosis into my iPhone, it autocorrected it to "amyloid oasis".  I kinda like that image better.  Here I am, relaxin'  in the amyloid oasis.  Bless you autocorrect.