My hospital's online chart system finally added my test results from when I was in the hospital. This completed my data set for my tests so, of course, I had to do some data analysis. It looks like this--
2008 1
2009 1
2010 8
2011 4
2012 26
2013 491
2014 63
2015 48
So, not too much until 2012 when I knew something was wrong starting in October; diagnosed and treated in 2013 ; and working on my recovery in 2014 and 2015. Nice to see the numbers trending down. Here's a graph showing the number of tests by month.
Here's a word cloud I did of the providers who ordered the tests. You see #1 is Yvonne Efebera, MD with 99 tests, #2 is Tammy Lamb at 89 and #3 is Rebecca Scott (the nurse practitioner on the bone marrow transplant unit) with 80. I've had tests ordered by 35 different providers. The father of a girl who played field hockey with Claire, Rob Baiocchi, MD is a hematologist at Ohio State. He mentioned at one of the games that I looked familiar and asked if he'd taken care of me. I told him that the time I was in the hospital was such a morphine induced blur and perhaps he did, but I didn't remember it. Sure enough, when I looked at the tests from when I was an inpatient, I saw that he ordered my red blood cell transfusion. Quite a small world.
I also did a word cloud of the tests that were ordered. You see the focus on the blood tests to see how my blood health was doing in the onslaught of chemo. CBC to check the components, hepatic function panel to check liver function (the amyloids went after my liver and chemo is metabolized by the liver--double whammy), interesting that the immunoglobulin free light chain test to measure the substances that create the amyloids is relatively small. They say that it's important to protect organ function for amyloidosis patients so it's nice to see the word cloud confirm my physician's focus on that.
I had a great appointment with Dr. Efebera this week. I posted this on Facebook--
4 month check up and all the digits look good. Kappa light chains aka
bad stuff is below normal at 2.79. It was 79 when diagnosed. Key liver
test that was 500 right after my transplant is now 57.
I sent this email to Dr. Efebera tonight at 5:06--
Alan
was asking me about our appointment and asked what we discussed about
my liver. I said we barely even talked about and breezed over the lab
results. I said, "She didn't even palpate it. My liver is like the
best gift I bring Yvonne and she didn't even take the time to enjoy it."
Glad you enjoyed the kidney results, though. :)
Merry Christmas, from all my organs.
She replied at 5:08--
I
know!!!!. Your abdomen is so flat (flatter than mine) that your liver
said “ no need to palpate me today, you can already see me”
And then added at 5:09--
and I love those kidneys of yours.
I love my kidneys, too. It's been a good week and I'm so grateful for how well I'm doing, what a great care team I have and how bright the future looks for Amyloidosis patients. 2015 has been a pretty good year!
What an incredible trip to DC for a meeting that brought together
most of the top Amyloidosis researchers from across the world, patient
advocates, caregivers, FDA representatives, and, most importantly,
representatives from the Amyloidosis Research Consortium.The ARC is an organization “committed to
building collaborative relationships between patients, academia, industry,
foundations, federal funders, and regulators to facilitate and speed new
therapies to market.”Highlights of the
meeting included—
Meeting or seeing again “my people” especially my
Amyloidosis sister Kim Tank, who I met in person for the first time
Confessing my research fan crush on Dr. Ray
Comenzo with him…and several of my Amyloiodosis friends (hilarity ensued, FYI)
Hearing the top researchers in the world share
with the FDA why the current drug development methodology in Amyloidosis is
killing patients (my words, there)
Learning of the strength and courage of others
who are struggling with this disease and hearing their heartwarming…and gut
wrenching…stories.
Having people share with me how my blog has
given them motivation and hope
Basically, the overall theme was HOPE!
Right now, there are no FDA approved therapies for AL
Amyloidosis.Every treatment is an
“off-label” use of a drug designed for Multiple Myeloma.Problem is, we don’t have MM.As Dr. Morie Gertz noted at the session, “The
massive gains in myeloma survival are not translating sufficiently to AL
patients.Unique interventions are
needed for amyloid population.The
amyloid population is uniquely fragile.Typical myeloma regimens have much more profound impact on AL.”I’m assuming that impact is negative.
Presenters, including Dr. Giampaolo Merlini from Italy and
Dr. Vaishali Sanchorawala from Boston talked about the physical, mental and
emotional costs of the disease.30% of
patients diagnosed with AL are dead at 6 months and for those with cardiac
involvement, median survival is 18 months.Not having approved drugs and the slow pace of drug development inherent
in diseases with small populations is causing deaths that could be
prevented.The pharma companies have potential
drugs but using overall survival as the success measure in clinical trials for
small populations makes the approval process too long and not economically
sound.For AL Amyloidosis, it makes
sense to use biomarkers that are proven to be predictors of overall survival as
success measures in trials.If the FDA
would allow that, it would reduce the time to complete a trial from 6 years to
3….cut in half!
Dr. Sanchorawala shared results showing the impact the disease
has on quality of life, another measure the FDA can use in determining whether
a drug is shown to be effective.Her
study showed that Amyloidosis patients have a similar reduction in quality of
life reported by people with Rheumatoid Arthritis.And for some groups of patients, it’s at a
similar level as chronic lung disease.The impact to quality of life by those two diseases is pretty well
understood.For many with Amyloidosis,
it is hard to measure with a clinical test the impact of the disease.How do you quantitatively measure the impact
that infiltration into the nerves of the mouth and salivary gland has?I know a woman who’s dealt with this for 13
years.It’s painful for her to talk, or
to smile at her grandchildren, so she feels isolated.If she were willing, why not let her try a
drug that might help improve her quality of life?But since that’s not an outcome that gets
measured, she’s ineligible to participate in any trials, regardless of how
willing she is because her outcome doesn't help the pharma company prove the efficacy of the drug to the FDA.
I’m HOPING that the ARC will be able to have the FDA accept
biomarkers and quality of life measures as study endpoints for Amyloidosis
drugs very soon….like starting next year.It’s interesting that I was asking on Twitter about this quality of life
question over the summer, thinking about the woman with the mouth
involvement.So happy to see it might
happen.
It was so wonderful meeting so many of the physicians whose
work I’ve read over the past two years.First and foremost was being able to chat with Dr. Ray Comenzo, who I
met at the Amyloidosis Gala in Nashville in October.I cornered him there for about 20 minutes and
told him how much I appreciated his work and how much hope he’s given me. He was very gracious as I gushed on and talked his ear off. I read this article (“How I treat Amyloidosis”)
when I was first diagnosed and the first case was so close to my disease
course.Reading about her recovery gave
me so much hope.When Dr. Comenzo came
into the breakfast room, I told my friends at the table he’s my researcher crush and that while I’ve only met
him once, I know him through his writing and I feel a deep connection to him. I
said his writing speaks to me more intimately than the most graphic romance
novel and, of course, lots of laughter ensued. Right after that, a woman went
up to him and they hugged.I said,
quietly so only my table could hear, “Don’t you go hitting on my man.You ladies see what I’m up against with him.”
Later in the day, I shared this discussion with Dr. Comenzo
and he got quite the laugh.I thanked
him for his research. We talked about the need for more treatments for
Amyloidosis and I shared with him my perspective on maintaining a positive
mental state.I said that I pictured a
sine wave going up and down across a horizontal axis.Right now, I’m above the line and wasn’t
going to waste a perfectly good remission worrying about relapse.As long as new treatments are being
developed, I can count on one of them being available if I relapse to put me
back above the line.My hope is to keep
the wave going as long as possible.He
said, “You may have a crush on me but you inspire me.”Swoon!
Dr. Sanchorwala came to me during one of the breaks after I’d
shared that I was treated at Ohio State.She asked me if I was treated by Dr. Efebera and when I told her I had,
she shared with me how much she enjoyed Dr. E when she trained in Boston. I
told Dr Sanchorwala how much I love Dr. E and how my friends and family believe
she’s the perfect personality for me.She
mentioned that she recognized me from Twitter from an online Amyloidosis
Journal Club that another physician has organized.It was really cool to talk with her.
Meeting so many patients I’ve interacted with online was a
blast. First and foremost, I got to
FINALLY meet my sister in this Amyloidosis sorority, Kim Tank.Kim and I met through a Facebook group as I
was recovering from my stem cell transplant and she was preparing for
hers.She’s a badass runner who completed
a 100K run while finishing up her chemo and qualified for the Boston Marathon 9
months after her transplant.She’s got
great faith and great humor and is my sister from another mister.I’ve felt close to her for over a year, even
though she lives in California, and it was great to meet her.We shared a room and had our Kappa Lambda
Delta Amyloidosis Sorority slumber party and then did a whirlwind drive through
DC on our way to the airport after the meeting was over.Lots of love and fun squished into 29
hours.
I got to reunite with Joanne Campbell who I met when I was
at Mayo and visited while she was having her stem cells harvested.I finally met Carole Harber and her husband
David.He’s a cyclist who had his bike
set up on a trainer in their hotel room during his stem cell transplant about a
year before mine.Last year, he was the
number one ranked road racer in his age group in the state of Oklahoma.I saw the actor Michael York again, first met
him at the gala in Nashville.He, his
wife and I had a lovely chat.Sharing a
room with more than 100 folks who are “my people” was a blast. The love, energy
and support was just phenomenal.Hearing
stories from folks who have had such a tougher road with this disease than I
have inspired me and filled me with gratitude.
I also finally met in person my fellow Amyloidosis Kat that
I met on Twitter.Kat Timpf is a
reporter for the National Review and a Fox News Correspondent. Her mom died
from cardiac Amyloidosis last year only three weeks after being diagnosed.We’ve shared some messages on Twitter and
tend to re-tweet one another’s amyloidosis tweets.She got up and shared her mom’s story at the
meeting. You can hear an interview she gave about it here.https://soundcloud.com/ben-kissel/katherine-timpfIt was heart-wrenching to hear her talk about
how the family celebrated when the doctors determined that her mom didn’t have
cancer.They didn’t know it at the time,
but she had something worse.Let that
sink in.
Josh Lacy shared his story of Amyloidosis.He was diagnosed with AL Amyloidosis with
cardiac involvement in 2012 when he was in his mid-30s.He was married with a 4 year old daughter and
1 year old son.You can imagine how
devastating this diagnosis would be at that time.During his talk, he made an impassioned plea
so he would be alive to see all the milestones ahead of his children—high
school, college, marriage and adult life.Boy do I know that feeling.He’s
a former college baseball player and talked about how hard it is to know his
son will never know his dad as the strong athlete Josh once was.That really choked me up.He talked about being too weak to go into
school for his daughter’s first day at kindergarten but he was able to go to
school in his wheelchair. He also gave me a good laugh when he described how he
didn’t have the strength to lift his son when he was sick so if his son didn’t
want to do something, he’d lie on the floor and look at Josh like he was
saying, “What are you going to do now?”
Later in the day, Josh came up to me and introduced
himself.I told him my name and he said
he knew who I was through my blog.That
his wife had read it and used it to motivate him during some of his tough times
basically saying, “Look at what that lady is doing.You can get back, too.”(My words, not theirs.)That was my whole reason for starting the
blog…to give hope to people that it is possible to have a full and satisfying
life with Amyloidosis.I felt so honored
to have served as a tiny bit of motivation for Josh and his wife Adrienne. I had a great chat with them.Such a great couple that joined this crappy
club.I am so inspired by their faith
and strength.
I thought about my girls as Kat was telling her story.If I had cardiac involvement, I’m firmly
convinced that I wouldn’t be alive today after my delay in diagnosis.I would have been like Kat’s mom or my friend
Cara or any of those other cardiac patients who have a median survival of 18
months after diagnosis.But, because of
some variable portion of the germ line of some gene, my free light chains
didn’t effect my heart.And so I’m here
today trying to use the time God has given me as effectively as possible.
My doctor introduced me to Cara who was diagnosed about 6 months after me. I told her I'd be her big sister in this crappy sorority we both pledged in to. She had cardiac involvement and, even though her hematology was starting to respond from chemo, her heart was too damaged and she died about 6 months after being diagnosed. She left behind a loving husband, three children between the ages of 9 and 14, and scores of loving family members and friends. I regularly think about the comment one of Cara’s
sisters in law said to me at her viewing, “We wanted your story to be her story.”I vowed then to try to change the story for a
Cara in the future. So that someone with cardiac Amyloidosis could have my
story. Yesterday was a HUGE step in that
direction.
She's got her cowboy boots and car keys on the
bedstand
So she can always run
She can get up, shower, and in half an hour she'll
be gone”
As some of you know, I
just finished attending the Teradata Partners conference in Anaheim. I call it
spring break for nerds but it's always a great time of learning new things and
re-connecting with colleagues from across my almost 20 years in the data and
analytics field. Oh and there's a fair amount of fun. I've been on the
planning committee for the conference for the last 4 years and this was my last
conference as a committee member. It was bittersweet.
Last year I was the
president so I gave a 20-minute keynote in Monday's general session and was
emcee for the closing general session on Wednesday. The highlights included
telling the story of some good work, meeting football commentator Herm Edwards,
and wearing a yellow spandex Kill Bill suit and, later, my cycling kit in front
of 3,000 of my closest friends. I had numerous people stop me this year
to tell me how much they enjoyed my time on the stage last year. (I just realized I never wrote about that here...sorry.)
While I wasn't on the big
stage this year, I did present with Dean Furness, a colleague who works at
Wells Fargo in Des Moines. Dean and I met when I went to speak at a
professional development day at Wells Fargo in December 2011. He also presented
and we became fast friends at a dinner the night before. At the time, he was working with a former colleague and volleyball partner, and friend David Brenner. We talked about the unique experience of being David's friend and colleague. :)
Seven days after we met,
Dean was in an accident at his family farm—an 1,800-pound hay bale rolled off
his front loader and crushed him underneath.It severed his spine and he’s now paralyzed from the chest down.But, through a lot of faith, support and hard
work, he got back to work faster than anyone predicted--including the Social
Security admin who came after him to return his disability payments because he
obviously couldn’t have been disabled since he came back so quickly.Ten months later, he presented at the Partners
conference in October 2012 and I had the pleasure of introducing him.
Now, those of you who have
been around a while may recognize that October 2012 was when I first realized I
was sick.While packing for the Teradata
conference that year, I had to go buy a new pair of pants because my jeans wouldn’t
button, even though I hadn’t gained weight.And some of the pictures from the conference show the slight signs of my
facial edema.Hmmmm?
Well, we know how that
turned out.Dean’s triumphant return coincided with the
beginning of my decline but, like Dean, through faith, support and hard work
I’ve made it back, too.So Dean and I
decided to do a session that talked about how people can use business
measurement constructs to help hem “up their average.”The title was “Curve Busters: Looking for a
Dare to be Great Situation.”
One thing Dean noted, as
he rolled across the stage in his wheelchair, was that people look at him and
automatically know he’s been permanently affected by his experience.It’s not obvious when someone looks at
me.But I have been permanently affected,
too.And lately, it’s been really
weighing on me creating this grating, and at times overwhelming, level of
frustration.I just didn’t know what was
frustrating me but it was a consistent feeling.
On Thursday, after the
conference was over, I went up to LA and had dinner with some dear friends.They’re facing their own health challenges
that are impacting their ability to have a life that is as fulfilling as they’d
like.We talked about the struggle of
keeping it together through the good days and the bad days.
After dinner, I went, by
myself, to see one of my new favorite performers, Frank Turner at a small
theater with a capacity of about 1,500 people.It was a great show and a great crowd and well worth the 45-minute drive
back to Anaheim at 11:30.The show was a
big sing along and as he played the song “I Am Disappeared” (which I hadn’t
listened to before), snippets of the lyrics just struck me and I had moment of
catharsis and epiphany.
“Of people wrapped up
tight in the things that will kill them(my disease)
Of being trapped in a lift
plunging straight to the bottom (if I relapse)
Of open seas and ways of
life we've forgotten (of being able to perform mentally and physically, and not worrying about the disease and it's complications)
I keep having dreams” (of
the time before I was sick)
“She woke up screaming in
the middle of the night
Terrified of her own
insides” (of the chromosomal defect that I have that is the worst factor for
long-term survival)
“And on the worst days
When it feels like life
weighs ten thousand tons
She's got her cowboy boots
and car keys on the bedstand
So she can always run
She can get up, shower,
and in half an hour she'll be gone”
“I keep having dreams of
things I need to do, And waking up but not following through” (I am so
distracted, I think that’s why I stay busy doing so many things)
I’ve had many days where I
felt like I wanted to run away, just get in the car and drive far, far
away.There are days when the pressure
of living with this disease, dealing with known and possible organ impact,
maintaining a career, trying to have a normal life, dealing with challenges at work blah, blah, blah are like
a crushing weight on me.It’s not a lot
of overwhelming, attention-grabbing thoughts or even an acute emotional
reaction.Its just there are times where
I feel like I’m trudging along wearing a 100-pound backpack.Maybe not ten thousand tons, not
debilitating, just a constant heavy presence.
I feel alone so much of
the time, even when I’m around friends, family and colleagues. It struck me that it wasn't a coincidence that I had this catharsis alone in the middle of a jam packed room. I’m alone in this struggle no matter how many
people I know that love me and care about me.And it’s made me hyper-sensitive to anything that I think contributes to
that sense of separation. Honestly, there are fleeting moments when I wonder why I'm alive, is what I'm living now worth all the work to get it and, if I relapse, worth all the future work to keep it. I talk myself out of it pretty quickly, but it happens occasionally.
When I feel like I want to
run away, I realize that there’s nowhere to run to get away from this.Dealing with this disease is the definition
of a “fact of life” for me…barring some significant and unexpected medical
advances,I will have to deal with this
as long as I’m alive.
From what I read, what I’m
dealing with isn’t uncommon for cancer survivors.I read an article in Psychology Today
entitled “The
New Cancer Survivors” noted this—
And
as more and more people are living with cancer as a chronic manageable
condition, often outlasting the crushing prognosis that the disease will cut
their life short, the psychological nature of their situation
becomes clearer. Theirs is a hyper-real, intensified state of existence in the
liminal space between being terminal and cured. In many cases, after believing
that their death was imminent and coming to terms with that fact in whatever
way they could, they find themselves instead navigating a new and wildly
uncharted reality. Their lives, unnervingly interrupted, are resumed in a form
that is somewhat familiar but permanently altered.
So I continue on,
permanently altered, navigating this uncharted reality. I have come to terms with death. I'm not afraid for me and, as much as I want to be around for Al, Amy, Claire and all my other friends and loved ones, I trust that God will provide for them what I might have. It's not a fear of death that weighs on me, but a nagging question of what should my life look like and how do I get past this sense of isolation? I think that's what drives my desire to run away..."If I'm going to feel alone, well then I'll just BE alone."
But, as my buddy Frank Turner says in one of
my favorite songs “We can get better, because we’re not dead yet.” So, I'm not dead...I'll try to get better.
Thanks, Frank!
"I Am
Disappeared"
I keep having dreams
Of pioneers and pirate
ships and Bob Dylan
Of people wrapped up tight
in the things that will kill them
Of being trapped in a lift
plunging straight to the bottom
Of open seas and ways of
life we've forgotten
I keep having dreams
Amy worked in a bar in
Exeter
I went back to her house
and I slept beside her
She woke up screaming in
the middle of the night
Terrified of her own
insides
Dreams of pirate ships and
Patty Hearst
Breaking through a life
over-rehearsed
She can't remember which
came first
The house, the home, or
the terrible thirst
She keeps having dreams
And on the worst days
When it feels like life
weighs ten thousand tons
She's got her cowboy boots
and car keys on the bedstand
So she can always run
She can get up, shower,
and in half an hour she'll be gone
I keep having dreams of
things I need to do
And waking up but not
following through
But it feels like I
haven't slept at all
When I wake to a silence
and she's facing the wall
Posters of Dylan and of Hemingway
An antique compass for a
sailor's escape
She says you just can't
live this way
And I close my eyes and I
never say
I'm still having dreams
And on the worst days
When it feels like life
weighs ten thousand tons
I sleep with my passport
One eye on the back door
So I can always run
I can get up, shower, and
in half an hour I'll be gone
And come morning
I am disappeared
Just an imprint on the
bedsheets
I'm by the roadside with
my thumb out
A car pulls up, and Bob's
driving
So I climb in
We don't say a word
As we pull off into the
sunrise
And these rivers of tarmac
are like arteries across the country
We are blood cells alive
in the bloodstream
The beating heart of the
country
We are electric pulses
In the pathways of the
sleeping soul of the country
We are electric pulses
In the pathways of the
sleeping soul of the country
