No Words

Those of you who know me, even casually, know that I'm rarely at a loss for words.  But I've just completed an experience that words, even with my ability to distill and make analogies, cannot begin to describe. I've accomplished a few things in my life that I'm really proud of--helping to create a loving family, professional achievements, riding in Pelotonia, oh, and that beating a disease that kills 40% of people diagnosed with it within 6 months.  But completing my 200-hour Yoga teacher training ranks near the top.

I went into the training with ZERO intention of teaching. This was about me, and getting better with my yoga practice.  There were still physical dynamics within my body that I felt had not recovered from the de-conditioning that happened after my stem cell transplant. I thought that a strong, knowledgeable yoga practice would be another step in my physical recovery. And, if I learned it well enough to teach it, I'd certainly be able to practice it well.

So, on September 8, just 9 days after we moved to our new house ie not the best time from a practical perspective, I started a 200-hour yoga teacher training. The cover of the manual said, "Awaken Your Truth, Embody Your Light." I was hopeful it would help in my physical recovery but it gave me so much more.  I've spent every Friday evening from 6:30-9 and every other Saturday and Sunday from 9-6:30 with a group of 8 women and 1 man.  I knew the instructor and took the class because I loved her ability to combine feistiness and nurturing in an amazing yoga class.

But, I was worried about spending 180 hours over 3 months with 8 people that I'd never met. While many people think I'm a classic extrovert, I really value deep relationships based on authentic connection and don't really have a desire to spend time with people in the absence of that connection. I was cautiously optimistic that the spirit of my instructor, Sara Goff would attract people with whom I could connect.

As the title of this post indicates, I have no words to describe this amazing group of humans I had the privilege to learn with, practice with, discover with and grow with.  We opened our hearts, minds and bodies to each other, sharing moments of humor and tears, intellectual growth and emotional growth.  Sara took a random collection of seekers and turned us into a connected collective, a true tribe, with authentic intimacy and selfless love for one another.

Our last day was filled with hugs, laughter, tears, and, for me (and probably others), a strong feeling of gratitude.  Not gratitude for becoming a teacher or improving my practice, but gratitude for the individual humans I had come to know and love, and the community we had created together, under Sara's wise and nurturing guidance.

As we shared our hearts with one another one last time at our graduation party, it seemed that everyone was looking for the path that would allow each to be their most true, authentic self, free from the standards and expectations imposed by others.  Sara knew that the path she was on as a Yoga teacher, trainer and community creator was the one she was destined to be on. Other were at a bit of a crossroads, but taking steps toward what they felt was their path toward their truth, their light.  THAT was the magic of the experience

While I entered the training with no intention to teach, I now feel I have been given a gift that I am obligated to share with others. So stay tuned...I'll be hosting some yoga classes to prepare riders for Pelotonia before cycling season and to help them recover from cycling during the season.  

Today, as I drove to take a class from Sara because I needed to get one more experience with a portion of this community, the song "Wild Country" by Wake Owl came on my Spotify Discover Weekly playlist. It starts with the line, "What will become of the truth if we keep it in?" I really feel that my truth has been awakened and, in order to embody my light, I need to share it with others.  Stay tuned.

Why I Ride

Today, I went on a 108-mile ride from Columbus to Cincinnati with 11 other Pelotonia cyclists.  It was my longest ride of the season and despite an inauspicious start--went down in a pile-up at mile 2 and hurt my hip, and the group had some trouble maintaining any pace the first 25 miles--it ended up being a great ride.

At mile 25, I was able to join up with a faster group.  During the first 25 miles, we averaged about 12 mph.  Over the last 85, we averaged 17 mph, including cranking it at about 20 mph from mile 104 to 108.  It was a great group.

During the lunch stop at mile 66, I was feeling pretty rough--my hip hurt from the fall, my hamstrings were reminding me how much work they'd done and it felt like a red hot ice pick was jabbing me in my right trapezius.  I was lying on the floor of the picnic pavilion where we'd stopped trying to not think about how much my body was hurting.  While I was lying there, I was scrolling through Facebook and saw this post from my nephew's wife.  My nephew, Seth, has been through a tough battle with cancer over the last 8 months--two surgeries, two rounds of really rough chemo, multiple hospital stays.  It was tough to see such a young man, with two young children, go through such a hard battle.  But Amanda's post says it all.  THIS is why this group of people, and so many others, ride Pelotonia.  To see someone diagnosed with cancer, and have an effective treatment available that allows them to return to a normal life.  Every mile I put in, is in hopes that I can pay it forward for someone who is diagnosed after me.  That they'll have the ability to return to a full life that they find enjoyable and meaningful.  Like I did, like Seth did.

Please consider a gift to Pelotonia to help others who face a cancer diagnosis have hope of a full recovery.  You can donate here  pelotonia.org/kat4gators

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!