Onward!

I had a great week at the Teradata Partners User Group meeting in Dallas.  It was another great conference and my colleagues on the Steering Committee did a great job planning it.  Sure wish I could have been more involved in the planning but I guess I'll have to make up for lost time next year.

As always, I learned a lot professionally from sessions and meetings with other customers.  It was also another instance in which I was overwhelmed by the encouragement and support from so many people.  So many people went out of their way to give me a hug and tell me they were praying for me or cheering me on.  And, sometimes, I'm surprised by some of the folks who take the time to tell me they care and are happy to see me.

I spent some time talking to a colleague who serves as the Director of Advanced Analytics for Teradata International.  She works with clients around the globe to determine how they can use their data to deliver better business results and sustainable competitive advantage.  She's got a doctorate in Statistics and has been in both academia and industry for more than 25 years.  On top of that, she's one of the smartest people I know.

Judy told me how she'd been thinking about me and keeping track of my progress.  She's gone through a battle with breast cancer so we talked about how being an analyst has impacted the way we manage our disease.  She found my data collection of test results to be totally normal and could empathize with my desire to build some process control charts for my key test results so I can identify when my values start to go "out of control."  We talked about our commitment to understanding the science of our diseases and staying up to date on treatment options.  Judy said, "Cancer is my hobby."  I can relate to that.

We talked about the challenge in diagnosing my disease and I described how impressed I was with Dr. Levin's thorough approach in my first appointment with him.  Judy said, "That's because he has the mind of an analyst.  He thinks comprehensively and can find the story in the data."

We talk a lot in my group about structured problem solving....the ability to take a problem and break it down into possible causes that are mutually exclusive and collectively exhaustive.  We use issue trees to help in this process.  As I watched my primary care doc use very unstructured, superficial thinking during my diagnostic process, I thought about the value of an issue tree that listed my symptoms at the top level, each body system at the next level, possible diseases at the third level and tests needed to confirm or refute the diagnosis at the fourth level.  She could then see the tests that were most common across the possible diagnoses and move through those possibly ruling out multiple diseases at a time as the tests were completed.

Judy and I talked about how primary care physicians are sorely lacking in this skill.  I take college courses that will help in my career or that I find interesting on coursera.org.  While perusing the catalog one day, I found a course entitled "Clinical Problem Solving."  The descriptions says, "Participants will learn how to move efficiently from patient signs and symptoms to a rational and prioritized set of diagnostic possibilities and will learn how to study and read to facilitate this process."  Obviously, the medical community recognizes the limited diagnostic prowess within its ranks.

We had our closing gala in Cowboy Stadium with a concert by One Republic.  The stadium was really extraordinary and the huge TV screen over the field was the most impressive feature.  I could not believe the quality of the picture.

Before the One Republic show, the Dallas Cowboy cheerleaders appeared on stage.  The rush of people, primarily men, moving rapidly toward the stage was quite remarkable.  I could see this word bubble floating in the air representing the primary thought of the men in the crowd--"BOOBIES!"  One of my colleagues on the Steering Committee stayed at the table with me at this point and enjoyed the sights of the cheerleaders on the ginormous tv screen.  15-foot wide booties covered in white polyester short shorts was impressive and disturbing at the same time.

The speaker at the closing session was Jamie Clark, professional adventurer who has summited Mt. Everest twice and climbed the highest summit on each of the seven continents.  His message was one of perseverance, overcoming obstacles, and “climbing your Everest”.  He shared a quote from Sir Edmund Hilary about Everest--"Everest is never conquered, it only tolerates momentary success."  There are times I feel that way about my disease.  How long will my Amyloidosis tolerate my current success?

Jamie also talked about fear.  He said that fear can paralyze us and asked how we conquer it.  Jamie said we don't conquer it, we have to find balance and focus.  But he did say that on the other side of fear we find freedom.

He talked about one of the climbers, John, on one of his Everest expeditions being a few hundred yards from the summit and having to make the choice to reach the summit but knowing it was likely he wouldn't make it back to camp.  Or to decide to stop and turn around, missing what might be his only chance to summit Everest.  He tells the story here.

His talk really made me think of my Everest--getting my Amyloidosis into remission.  I had the opportunity to share that with Jamie when I met him after his talk.  He said, "But I had a choice to go up that mountain, you didn't."  But really, I faced a similar decision as his climbing partner, John.  I could have chosen a less aggressive treatment than the stem cell transplant.  I see stories of some people who choose (or their doctors choose for them) to try chemotherapy first before undergoing a procedure as risky and taxing as a stem cell transplant.  I chose to push on to the summit knowing there was a chance I might not make it back.  Granted, that chance was small and much less than the almost certain risk of death that John faced, but it was there.

What made the decision a no-brainer for me is what Jamie says is found on the other side of our fear--freedom.  I feel that I now have freedom to live a relatively normal life for whatever period of time my disease is in remission, however long it tolerates this current success.

As Jamie signed his book, Above All Else, for me he said, "I think you'll appreciate the word I've inscribed in the book."  I looked down at the book he was signing on the table and he'd written "Onward!"

Yes, onward, enjoying the freedom I've found on the other side of my fear.

Dallas, Indian Food, Gratitude

Tomorrow, I go to Dallas for 6 days for what I call "spring break for data geeks."  Its actually the Teradata Partners Conference that brings together 3,000 data and analytics professionals from the top companies around the world.  I'm on the conference steering committee that plans the conference.  Normally, I have a good grasp of the conference details but I missed all of the planning sessions for this year except the first one in San Diego in February...and I missed half of that because I was too sick with the Amyloidosis to attend the entire meeting.

I always look forward to this meeting because I can talk data and analytics for 24/7....well, that's some of it but I also get to see a lot of former colleagues I've gained in my 15 years in this field.  It's a rewarding time both personally and professionally.  Because my team does such advanced work in the field, there are always a lot of companies that want to learn about what we do.  I have meetings scheduled with folks from a bank in Australia, a bank in Russia and an insurance company in South Africa.  Its always interesting to "talk shop"with folks from across the globe.

But this time, it will be different because it's in the "after."  My fellow committee members and some former colleagues know about my battle but many do not.  I'm sure I'll spend a fair amount of time talking about the disease, treatment and diagnosis.  But I'm OK with that.

It will also be the longest I've been away from Alan since my hospitalization and recovery.   When I was in the hospital, we were together at least 10 hours a day, 7 days a week.  For the 6 weeks after I was discharged before he went back to work, it was 24/7.  Before I got sick, I would have worried how that much togetherness would effect our relationship.  But during my hospitalization and recovery, he became my rock, my protector, my cheerleader and ass-kicker--most of the ass-kicking happened after I got out of the hospital and he pushed me to regain my strength.

We went out to dinner tonight at an Indian Restaurant and talked about my upcoming trip and reflected on my hospitalization and recovery.  We both agreed that it felt like that time was 2-3 years ago, not 5-6 months ago.  I think its similar to what happens when you have a baby.  It's so painful at the time but the memory of the pain fades away.

We joked around about his gruff bedside manner with his hospital patients and I complimented him on how caring and patient he was with me in the hospital.  I said, "But, you were kind of an asshole when I came home pushing me so hard to regain my strength."  He said, "Honestly, there were times I looked at you and wondered if you'd ever get back to some version of normal."  But we both commented on how quickly a decent version of normal has returned.

I still spend a lot of time reading the medical literature on the disease and I'm watching videos from a semester-long immunology course from UMass so I can better understand the science behind the test results I now watch like a hawk--monoclonal protein immunoglobulins, serum kappa free light chains, serum lambda free light chains, serum kappa/lambda ratio.  I check my test results as soon as they come in and ask questions when I see anything that looks like variation.  I'm sure my doctor's nurse practitioner gets tired of my questions but, as I told her, I have an almost post traumatic stress reaction when I see things change.  The reaction is getting less extreme as time goes on.  Maybe that's part of my "new normal."

I'm now at a point where I can talk about the stem cell transplant without crying.  For the first few months after, any discussion of it would take me back to that scary place.   The transplant itself wasn't scary but the pain from all the fluid was. I cried a lot after my diagnosis and during my treatment and recovery.  Those were tears of fear, pain and emotional despair.  I still cry more than I used to before my diagnosis, but now, those are almost always tears of gratitude--for my transplant response, my prognosis, my husband, my daughters, my sisters, my family, my church family, my prayer warriors, my friends, my coworkers.  I have so many things for which I'm grateful.

I subscribe to an Amyloidosis Support Group on Yahoo.  Tonight, the president of the support group sent out a note about a 57-year-old woman who just died from the disease.  She shared this in the discussion...

Dr. Vescio coined the phrase that “Someday this disease will be a treatable nuisance”…and we know he meant if diagnosed quickly and treated well…and Dr. Skinner at a meeting recently said that this disease, in her mind, was almost at the “chronic stage” and we know she also meant if caught early….and treated well so it does all go back to awareness..

Both of those physicians are among the top Amyloidosis specialists in the world.  It's encouraging to see their perspective.  A chronic disease like diabetes or asthma.  So maybe it is incurable.  For me a 30-year remission is as good as a cure.  I get more and more hopeful that its possible.

So, tomorrow I take another giant step toward the old normal...or adding to my new normal.  I'll miss Al but we both agreed that this is much more like normal.  Look out Dallas.  I'm back and better than ever!

My Dad

I've been thinking about my dad a lot today since today would have been his 88th birthday.  Since his death was so close to my diagnosis and the whirlwind of emotions and activity that set off, I sometimes feel that I never really went through a grieving process for him.

The events of last February were just so bad.  Let's recap--

February 1--my father-in-law passed away
February 7--my father-in-law's funeral
February 14--my first appointment with Dr. Levin
February 18--my father passed away
February 23--my father's funeral
February 25--Dr. Levin calls me with the diagnosis of Amyloidosis
February 28--my first appointment with Dr. Efebera

Wow, I've never spelled it out like that before.  That's a lot of tragedy jam-packed into the shortest month of the year.

I came back from my dad's funeral on a Sunday and Monday after work is when Dr. Levin called me with my diagnosis.  He called me while I was driving home from work (I was just approaching the 33 exit on I-270) and he said something like, "I wanted to let you know that I have a diagnosis.  It's a condition called Primary Amyloidosis.  Its very rare and I'm not really sure to whom I should refer you.  I have some calls and emails out.  I'll call you tomorrow and let you know what I find out."

I called Alan and when I got home, we were both on our laptops, furiously searching the internet for information.  Bad move!  The Google searches for Primary Amyloidosis gave the impression that there was no hope and I was looking at surviving about 4 years or so.  It really distracted my attention from my dad's death and firmly focused it on what I believed to be my own impending death.

So today I've been thinking about the many lessons my dad taught me and the great memories I have of him.  And I'm thankful for a future that is very different from the one I thought I was facing last February.

Happy Half Birthday to Me!

Tomorrow I turn 6 months old.  Yes, there are times I may act like an infant but this birthday is due to my stem cell transplant.  People who have undergone the transplant often celebrate the date of the transplant as a birthday--hey, maybe I didn't travel down a birth canal but getting a whole new blood system is a pretty big deal.

I've spent the week with all of the gists in my life--nephrologist, gastroenterologist, hematology oncologist--and got good news across the board.  I won the gist trifecta!  The best news is that I've achieved a complete hematologic response to the stem cell transplant.  The response is categorized into complete, partial and none and is based on whether the M protein is found in urine and the ratio of immunoglobulin free light-chain.  Side note:  I have done a lot of reading about this disease and still don't understand enough about the cellular biology to explain what that means...I only know it matters.

The reason I know this matters is because of this chart from a 2007 study at the Mayo Clinic...

We analyzed 282 consecutive stem cell transplant patients. A partial hematologic response was achieved in 108 patients (38%), and 93 (33%) achieved a complete hematologic response. Survival rates of patients with complete, partial, or no response were significantly different, even after eliminating bias from early death. The degree of response was affected by the intensity of chemotherapy conditioning, septal thickness, and cardiac biomarkers. Hematologic response translates to longer survival.

 Dr. Efebera also said that my liver may reduce by 1/3rd over time to that will help with some of my bloating and pain.  A med school student was shadowing her during the appointment and she was showing him some of my CT scans and how large my liver was.  Normal liver span is about 13 cm and mine measured 24 cm in December and I'm sure its gotten bigger since then.  He asked if he could feel my liver and I said, "Go ahead.  I'm a little bit of a medical freak show where my liver is concerned."  I told him I have this mental image of a liver shaped Godzilla wreaking havoc throughout my abdomen metaphorically pulling down phone wires and smashing buses with screaming people inside.

I had an IV infusion of Zometa after my appointment with Dr. Efebera.  It only took 15 minutes for the infusion but toward the end, I developed pretty severe chest pain, throat tightening and pain in my ears.  These are all known side effects of the medication.  My nurse paged the nurse practitioner, Tammy, who is one of my medical buddies.  We joke around a bit in our emails to one another and she's a lot of fun.  She walked into the room and said, "What are you doing to me?"  I replied, "The real question is what are you doing to me?"  She said I had a good point there.

So, after some IV benadryl followed by some IV steroids, I was back to normal and went to work.

My appointment with my nephrologist, Dr. Samir Parikh was pretty uneventful.  We talked about reducing my diuretics over time to lessen the load on my kidneys.  After all the fluid issues before and during my hospitalization, I'm very reluctant to change those, almost irrationally so.  The good thing about Dr. Parikh is that he listens to my concerns and will change his recommended course of action.

He talked about how well my recovery has gone and how hard I've worked to regain my strength.  He told me I should go out to patient groups and give talks on how to recover effectively from serious disease.  Maybe I won't do that, but I think I might have a book inside me that might cover that.  I just need to get with some of my friends who are published authors--Fr. Stephen, Bonnie and Jim (soon to be published I'm sure)--to figure out how to get that book out of my heart and head and into the computer.

My appointment with my gastroenterologist went well also.  As I've said before, Dr. Levin is my main man, the top gist, since he diagnosed me and was the one to get all the gists on the same page when I had so many fluid issues in the hospital and they were looking a little like Keystone Cops.

No new good news, but no bad news either.  He thinks my abdominal bloating is due to damage from the disease and chemo and may improve over time as the amyloids clear out of my GI tract.  He is still concerned about the size and firmness of my liver.  There's one part of my liver that is really prominent (medical term for really sticks out) just below my rib cage on the left side.  Every time he plapates that area, he gets this really squinty look on his face I interpret as "this just isn't right."  My liver function tests are all still really good and the ultrasound from June showed the blood flow is good through the liver. Obstructed blood flow is one of the early indications of a damaged liver.

I've had some variation in some of the key measures in the liver function test.  Over the last 2 months, 2 key components had been creeping up steadily--46, 51, 53, 58,  64 and then back down to 43 this week.  I asked Dr. Levin about it and he characterized it as insignificant variation.  I think I need to get all my old hepatic function tests and start building some control charts for my liver function.  Time to go 3-sigma on my liver so I can see when the process starts to get out of control.  Problem is, I'd need to hire someone to do the data entry from the 250 pages of lab results I have on paper from my hospitalization.  

Dr. Levin did order an MRE of my liver.  No, that's not a typo for an MRI, it's a test called a Magentic Resonance Elastography.  It's a non-invasive way to detect hardening of the liver.  Its still a non-standard test at OSU so he has to get with the Radiologist and Physicist to get my appointment scheduled.

Dr. Efebera didn't seem to think there was much point in doing the test because there's no change in treatment depending on the results.  I hear Dr. Tom Bishop, statistics professor not medical doctor, talking about the Axiom of Action "in research, theory is developed, experiments are conducted, and data are collected and analyzed to generate knowledge to form a rational basis for action."  He's breaking one of Dr. Bishop's basic rules---if you're not going to change something in response to the data, there is no value in collecting it.  This test could go a long way in putting my mind at ease or causing me to freak out.

The reason it might freak me out is because if it shows my liver is hardened, its another indication of damage but there's nothing we can do about it.  I think one of the reasons my recovery has gone so well is because I have more than optimism, I have HOPE.  The difference, according to a Dr. Shane Lopez, the world's leading expert on hope according to Gallup Corporation (his employer), is that optimism is thinking “that the future will be better than the present,” while hope is thinking “that the future will be better and that you have a role in making it so.”

But, if I go back to my faith, our hope is in Christ Jesus.  So even if it shows hardening, I will have a role in making the future better than the present.  In this case, it will be through prayer which, time after time, God keeps pointing me back to prayer as the only action needed from me.

Weekend before last, Claire and I were in San Diego for some lacrosse stuff.  It brought back memories of my last trip to San Diego.  It was February of last year for a meeting of the Teradata Partners Steering Committee.  Its a group of folks who plan the conference for the database platform and applications most often used by the top companies around the world.

During that trip I became firmly convinced that there was most definitely something wrong with me. My stomach hurt so bad that I had to miss one full day of meetings because I couldn't leave my room and couldn't find anything to eat that I could tolerate.  The trip to San Diego last year was miserable but the trip this year was so enjoyable. It was very normal (understanding that normal for me means a high degree of fun is involved.)  I got to stay with my dear friends Danielle and Greg, get to know their children Anna and Ryan, watch Claire play lacrosse, hang out with Claire at the La Jolla glider port, go to the beach and I even had a margarita.  What's not to like?

I've been thinking a lot about the days before and after my diagnosis.  I'm a big fan of consciously taking a retrospective view from time to time to really look at the progress that's been made.  I've come so far physically, spiritually and emotionally from that time last February and March.  The days following the diagnosis I was like a boxer who had just received a flurry of heavy punches from an opponent--stumbling around the ring with no idea as to which corner I should head.

But I got my feet back under me and my mind cleared so I could continue the fight.  Some people think I have an incredible amount of strength to undergo all the tests and treatments I have.  Its nothing more than keeping my eyes on the prize--a day when I'm in remission and the effects from the disease are insignificant.  I think about Peter stepping out of the boat.  He was fine when he kept his eyes on Jesus and was able to overcome the dangerous physical forces all around him.  Once he took his eyes off the prize, he was overwhelmed by his situation and sank.  Its in my best interest to keep looking to the future--where my hope is in Christ Jesus.

Every test, every treatment puts me one step closer to that day.  I think of my friend Robyn who died a few weeks ago from pancreatic cancer.  I have the opportunity to fight, she doesn't.  So if my life involves lots of medical activity...well, it means I'm still alive.  They don't give IVs to dead people.

So, tonight, as I prepare to turn 6 months old, I am filled with thanks--for a loving God, for all the my friends and family who have been so diligent in prayer and positive vibes, for my medical team, for so so many things.  I'm alive, I'm getting back to normal and I've got a great prognosis.  Oh, how I've grown these 6 months!