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.

Ten Thousand Tons

“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”

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)

“And come morning

I am disappeared

Just an imprint on the bedsheets

I'm by the roadside with my thumb out”

http://youtu.be/6t2Hz6KL3uE

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

We are electric pulses

The sleeping soul of the country

The sleeping soul of the country

The sleeping soul of the country