Raising my Ebenezer

Those who've read my blog for a while know that I listen to a lot of music...different artists, genres, periods.  And while I love some hard hitting indie rock (looking at you Frank Turner, current fave), classic Christian hymns are go-to music for peace and comfort.  I wrote about it here (the morning after I was diagnosed), here when I booked my appointment at Mayo Clinic, and here when I reflected on my time in the hospital.

As I recovered and left the vestiges of illness behind, I thought more and more about ways to remind myself of God's goodness to me through this time.  One of the reasons I think and write about my illness is so that I can bask in the blessing that is my recovery.  

In one of my favorite hymns "Come Thou Fount of Every Blessing", my favorite line is "Here I raise my ebenezer, here by thy great help I've come."  An ebenezer is a stone monument meant to signify great help from God.  It's taken from 1 Samuel 7 when the Israelites defeated the Philistines.  In the hymn, that line about raising an ebenezer is about acknowledging God's blessings.

In my usual rebellious manner, I've added a new twist to the "ebenezer" concept.  The monuments I've created to remind me, and others, of God's goodness and to celebrate my recovery are...tattoos.  After getting such a great report from Dr. Efebera last month (normal, stable FLCs; totally normal organ and blood biomarkers; move to 6 month follow-up) and feeling like my physical fitness was returning to my pre-illness level, I knew I wanted to get a tattoo to commemorate this..and remind me to share my story with others to bring hope and encouragement.  I knew exactly what I wanted to get....

After stem cell transplants, you don't know if it was successful until 100 days after the transplant.  That's when the tests are done to determine if that hell I went through actually accomplished anything.  As you can imagine, it was a pretty stressful time for me.  One day during this time when I was descending into an abyss of worry, I was standing at my front window.  I saw a goldfinch in the bushes.  I love birds of all types, especially goldfinches, and enjoyed watching the little guy flit around.  At one point, he stopped and turned his head.  It seemed like he knew I was watching him and I was sure he would fly away.  Instead, he flew over to the window where I was standing, landed on the frame and stood there staring at me for about a minute.  It was so cool and such a wonderful little blessing to break my worry.

Later, I found out that in Renaissance times, the goldfinch symbolized a return of health or a rising from the sick bed.  How cool is that?  

Last week while I was in Jacksonville spending Christmas at Amy and Sean's, I got a goldfinch tattoo on my inner bicep from James Cumberland at Sunday Tattoo. Sean said he does great bird tattoos and he did not disappoint.  Not only did he come in on his day off to fit me in, he was a nice guy and did great work.  I originally wanted to get it on my forearm so it would be more visible and allow me to share it's significance ie "raise my ebenezer."  I consulted about this with two women in my field who are about my age, much more successful than me and share my rebellious spirt. They both said I should go for it since it's such a great story and, as one of them said, it's not like I have to prove myself professionally.  But my daughter Amy and one of her friends ganged up on me and strongly suggested I put it in a location that was more "hideable" in a business setting.  It's on my inner bicep.

Here are two pictures taken exactly three years apart.  The one on the left was taken January 1, 2014 is when I decided I was strong enough to really start working out again.  I'd been working out some but I wanted to take a picture of where I was when I moved from recovering from my illness and treatment to restoring my physical fitness.  The one on the right was from this morning, showing my restoration and my "ebenezers".  (I'll share the story about the wave tattoo another time.)  


And here's a close-up of the goldfinch.

Now, whenever I raise my right arm--to work out, high five, clap at a concert, give a hug, anything--I'll be "raising my ebenezer" and remembering God's blessings.

Adventures in Work Travel

As many of you know, I left my job with Nationwide Insurance in June after 10 years with the company.  I took a role as a Business Consultant with Teradata, a company I've worked closely with for the last 16 years.  The new role requires that I travel a few days per week for a few weeks each month to meet with clients.  While I know it will probably wear on me after a while, it's been pretty good so far.

This week was my worst week of travel yet, but I still really love my job.  I spent Monday through Thursday working with colleagues in San Francisco planning out the products and solutions that I will be presenting to clients.  I've known one person on the team for more than 10 years and really enjoyed getting to know the others, having lots of fun and designing a kick ass product.  A group of us went to the San Francisco Giants baseball game on Tuesday night and I got to meet one of my Amyloidosis little sisters who was also at the game.  On Wednesday, we worked until 7:30 and then went to a funky little restaurant in Chinatown with my colleague from the UK. I also found out I'll be going from Dublin, Ohio to Dublin, Ireland for a week in January for our Global Sales Training.  

The travel was pretty good going out.  I flew from Columbus to Minneapolis and then on to San Francisco.  I was a little late getting into Minneapolis but when I got to the gate for my flight, they were boarding so I didn't have to wait at all but there wasn't room for my carry on so I had to take it to the front of the plane.  While I was at the front of the plane, the flight attendants were trying to convince a man to stay on the plane who had asked to get off because he was claustrophobic.

I had two colleagues on the flight and when we got to San Francisco, went together in a cab to our hotel.  You couldn't have ordered up from a casting office a better representation of "grungy, stereotypical cab driver" than the one we had.  He was obviously foreign, had crazy hair sticking up and smelled like he hadn't bathed in a month.  My colleagues and I were giving each other sideways glances in the back seat.  I handed out breath mints, my colleague distributed scented hand sanitizer...anything to cover the smell.  I really thought I was going to be sick.  

Thursday afternoon I flew from San Francisco to Minneapolis and then on to Philadelphia.  I was representing Teradata at the Wharton Customer Analytics Initiative partner meeting.  When we arrived to Philly, I was standing in the aisle of the plane waiting to exit and the man in the aisle seat next to me was sitting because there was no place for him to stand.  The woman next to him (60ish year old and looking pretty anxious) was standing up in a hunched over way since she was by the window, said to him "Mister, you need to get up because I don't want to the the last person to get off the plane."  He didn't say anything so I tried to defuse the situation and said, "Ma'am, he doesn't have any place to stand because I'm here.  I promise I'll let him go in front of me."  Then he added to her, "And I'll let you go in front of me."  A few minutes later, the line still hadn't moved and she said, "If you don't stand up and I'm going to climb over you" which a) probably wouldn't have been successful and b) wouldn't have been pretty if she tried.  I just said, "Ma'am, I promise you that you can go in front of me."  Crazy lady!

I got to my hotel about midnight and had a few emails to answer before I went to bed.  Thankfully, my meeting the next day didn't start until 9:30 so I got up at 7, got ready, did a little work and headed to the Wharton Customer Analytics Initiative partner meeting.  I spent the day in a room with 20 people listening to professors from Penn and Wharton describing their work in analytics.  As I left at 3, I was notified that my flight out of Philadelphia was delayed and I would probably miss my connection in Detroit.  I decided to go to a cute cafe/wine bar and have some food and wine before I headed to the airport.  Little did I know, this was going on in the atmosphere...

As I was heading to the airport, my colleague, Mary, who arranged for me to attend the meeting called to see how things went.  I told her I had a great day but then told her about the travel challenges.  She started searching for flights for me.  About that time, I was notified that Delta had re-booked my on United to go through Dulles and get to Columbus about the same time as originally scheduled.  When I tried to check in on my phone, the United website said one of my flights had been cancelled.  I called our corporate travel partner and they said that the flights were still scheduled and I needed to go to the United counter.  I was at the Delta counter so I went over to the United terminal, waited about 10 minutes (heard them tell a man there were no available flights until Sunday) and United told me that yes, my flight out of Philly was canceled.  So, it was back to Delta to get back on my original flight to Detroit, knowing I could drive to Columbus if needed.  I waited in line and on hold on the phone and got back on the flight to Detroit that was now arriving at 11.  

I made it to Detroit, got to the car rental (after about 30 minutes) and headed out to Columbus.  Alan had offered to come up and pick me up but he had already driven to Cincinnati to pick up Claire, had worked the night before and I didn't want him to have to spend 9 hours driving that day.  So, I headed south to Columbus pretty tired from the week and with some rain ahead of me.  I loaded up some podcasts and Alan said to call him if I felt sleepy.  

About 1 am, I got a text from my colleague Mary asking if I was home yet.  I told her I still had 1-1/2 hours of driving left.  She asked if my husband had picked me up and I lied and said yes because there was no point in her worrying about me.

I got home about 2:45 and crawled in to bed.  Alan got up in the morning and took the rental car back for me so I could sleep longer and relax.  Even with all these "adventures", I still love my job.  I got to work with some wicked smart and hilarious colleagues doing great work and then talk shop with some of the most prestigious business professors in the world.  I'm working with some great clients and account teams that challenge me in a really productive way.

So, I'm back at it next week meeting with a large US insurer in Boston on Tuesday and with the account team for a large CPG company in Cincinnati on Wednesday.  I'll try to enjoy Boston Monday night and have dinner with Claire on Tuesday and Wednesday before coming home Wednesday night.

Yes, it's busy, yes it's a lot of travel and yes, it can be a hassle sometimes, but I'm always thankful I have the health and stamina to do it.  A bad day traveling beats a good day in the hospital  These adventures are what remission is all about.

Wall Theology

As many of you know, I received my Amyloidosis diagnosis the day after I returned from my dad's funeral in Florida.  It was a whirlwind time of so many emotions and the busyness of trying to save my life.  Many emotions and actions went unattended as I focused on my health.

While I was in Florida, my stepmother asked me if there were any of my dad's belongings that I wanted.  There was only one thing I really wanted...this watercolor.

It had hung in my parents' home while I was growing up and I always loved it.  My parents didn't go to church so any "theology" I got was either from my grandmother, who attended a rather scary Pentecostal church, or second hand through items like this.

My stepmother seemed reluctant to let me have it and told me she would box up some items and ship them to me later.  The box came while I was in the midst of my chemo and remained unopened....until today.  Cleaning out our basement and the rest of our house to prepare for a huge garage sale is my first priority during my period of "fun-employment."  (For those who haven't heard, I left my job with Nationwide after 10 years and I'm taking the summer off before I move on to my next job.)

I was so happy to see that the robin and sparrow watercolor was in the box.  I was so apprehensive and would have been very sad if it hadn't.

When I asked my stepmother for that, I had no idea how much the attitude depicted in that painting would carry me through the next period in my life.  It now means even more that it did before I was diagnosed.

Still Going Strong

I'm writing this post from Sandy, Utah on the last day of a fabulous ski vacation.  My husband, two daughters, son in law and brother in law skied for four days at three different resorts and it was fantastic.  The weather was great--3 days of nice snow and bluebird skies, and one day of constant snowfall.  We are all about the same level skier and so it's fun to just chase each other down mountains.

We stayed at an AirBNB that was awesome.  It was a 4BR, 3Bath home located about 25 minutes from the slopes and 5 minutes from the grocery store.  It has a lovely hot tub and is really comfortable and cozy.  Of course, the best part was just spending time together. Our older daughter, Amy, and her husband, Sean, live in Florida so the times when we're together with them are really special.

We skied at Solitude, Alta (2 days) and Snowbird.  Each day and resort was special. Here are a few photos.

Me and my brother in law (top) and me and my husband

My daughter Amy and her husband Sean

One of the mountains at Alta

Claire, me and Amy

We had the GoPro recording at various points.  I haven't had a chance to compile the overall video but this 45-second excerpt was too good not to share.  Thankfully, Amy is ok.  You can see the care and compassion inherent in our family as we all double over in laughter at her misfortune.  As she watched the video, she commented, "I really like how you're practically contorted with laughter."  :)  Amy's Crash Video

As you might expect, I gather my stats as I ski so I can see number of runs, distance and speed of my day.  I'm proud to say that I set a new land speed record this year.  My previous record was 42mph on the bike, the ski record was 38mph.  This year, I hit 48mph on skis.  Boy did it feel good to be able to go that fast!

This time of year is always a time of reflection for me because I received my Amyloidosis diagnosis on February 25, 2013.  I think back to those scary times when I wondered if I'd ever be able to do active vacations with my family ever again.  I think about the ski trip we took between my chemo and stem cell transplant with the 30 pounds of fluid in my abdomen.  I couldn't even buckle my ski boots but I skied every morning with my family even though I could hardly eat because of the pain from the GI involvement.  I remember the grief I felt when I was too weak to ski down the final day and had to ride the gondola down the mountain.  I wondered if that would be my last act on a ski slope....one of defeat.

But, that wasn't the case and I've been able to continue doing the activities I love--cycling, skiing, and most importantly, traveling with my family.  Several times a week, I see a post on the Amyloidosis Facebook page or an online forum about someone dying from the disease or being permanently incapacitated.  I am so thankful for every day of health I have.  I lost something I took for granted and I try to savor its return every day.

Next month, I'll be speaking with my physician, Yvonne Efebera, MD, to the board of directors for the Foundation of the cancer hospital where I was treated, Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute...aka The James.  My message will be one of thanks, thanks to each person there and the millions of others who have supported cancer research in the past.  Research into my chemo drugs and the use of stem cell transplants many years ago is the reason I can savor my health and the life it affords me.

If you'd enjoy the opportunity to give that gift of health and hope to someone in the future, please consider donating to my Pelotonia ride.  pelotonia.org/kat4gators 100% of all rider donations go directly to cancer research.  To learn more, you can read some of my previous Pelotonia posts here--http://katseyeview.blogspot.com/search/label/pelotonia 

Your donation could fund the research that creates the treatment that returns health and hope to some person in the future.  Let's End Cancer!

Data Crunching

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!

36 Hours in DC

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-timpf  It 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.