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.

Cool Golf Drill

Martin Hall's Step-in Swing Drill

Adjective-free Friends

As I was talking to Al about my 50th Birthday Party, he was commenting on how many friends I have...about 75 showed up Friday. I said, "But so many have adjectives in front of the word 'friend'--work friends, church friends, Gator friends, sports friends. I need more friends who don't have adjectives."

Alan, in a moment of surprising clarity said, "All friends have adjectives, some have just gotten to the point that their adjective is 'best'."

Wisdom in those words. So, to all my friends, regardless of your adjective, I LOVE YOU!