Goodbye 2013!

Well, my trip to Mayo was as wonderful as I could have hoped.  Bottom line is that Dr. Gertz said that I don't meet their criteria for Smoldering Multiple Myeloma (SMM).  Granted, he didn't say I don't have it but that's because there's not a lot of consensus among the hematologists about when someone actually has it.  This table from a Mayo article in the December issue of the journal of the American Society of Hematology shows 9 different sets of criteria to diagnose SMM.  In the article, Mayo proposes new criteria to define SMM.  I'll go with their definition.

When I asked Dr. Gertz about the Revlimid therapy (maintenance chemo) that I'm on, he said that even if I did have SMM I wouldn't be considered high risk and they would not have me on maintenance chemo.  He said something to the effect of "there is no basis in the literature for you to be on Revlimid but I can understand a physician's intellectual leap to think it would be appropriate."  Translating the physician-ese, I think that says, "There aren't any studies that say its effective but your doctor's usage is logical."

The best news was when I asked him if I could expect a durable, long-term remission.  Technically, Amyloidosis is incurable and the best outcome is this durable, long-term remission.  As I've said to many people, I don't need a cure, a 30-year remission is as good as a cure for me.  Dr. Gertz said that it would be reasonable for me to expect that and he didn't see anything to indicate it could not be achieved.  Now, 30 years is beyond what's expected but with the treatment advances that have been made recently and new ones currently in the works, I really believe it's possible.

When I booked the appointment, the Mayo rep told me to plan to spend 2 days there in case they needed additional tests.  I didn't need any additional tests.  That was another confirmation of the expertise of my local physician.  My medical record from Ohio State had all the information Dr. Gertz needed to evaluate my case.

My appointment was at 8am on Monday.  I was back in the exam room shortly after 8 and Dr. Gertz came in around 8:15 wearing a nice pinstripe suit, white shirt and red tie.  It was nice that it was just him, no fellows, no medical entourage.  I love contributing to physician education and training but one on one time with an expert physician is a wonderful luxury.  The exam room looked like it was straight out of the 40s or 50s, in a cool way, not a run-down way.  The exam table was this cool, retro looking wooden table.  There was natural wood wainscoting around the room and one wall featured Dr. Gertz' diplomas, awards and some artwork.  Seemed like it was combo exam room and office for him.

I brought my 400 page medical record from Ohio State as instructed by Mayo.  As I lugged the tome around with me, clutching it like Smeagol clutched his precious ring, I wondered how much of it he would actually review...or would he have some fellow do the data mining.  He came into the room, introduced himself and began reviewing my record as I sat there.  I kid you not, the man reviewed each and every page of this record.

Some pages he just scanned and some he spent a lot of time on.  He circled and underlined items and made lots of notes on another page.  At one point, he pulled up the x-rays from my myeloma survey (basically an x-ray of every bone in my body done when I was first diagnosed) looking at the spots the radiologist identified as possible lesions...a sign of myeloma.  He told me that I didn't have any lesions.

I was impressed with how thorough he was.  I changed into a gown and he examined me doing the usual heart and lung physical exam and then he spent some time on my liver.  He was making his notes with a Mont Blanc ball point pen.  While he was examining my liver he asked if it was ok for him to make some marks on my abdomen and I obliged, of course, so he proceeded to draw some lines with his nice pen.  I kinda wanted to ask him to autograph my belly while he was there.  I also resisted the temptation to take a selfie with him despite my friend's challenge to do it.  I thought it might make the relationship a bit too informal at the start.

He agrees with Dr. Efebera's assessment that my liver may never return to normal size but it will reduce over time. He said my kidneys are showing good recovery and my liver function tests show recovery even if it is still significantly hardened and enlarged.

He spent about 1 hour and 15 minutes with me and answered every question I had.  His calm and confident demeanor was wonderful and he was so thorough in all his answers.

The best part was that I was done after that. I didn't need the 2 days so I called the airline and changed my reservation so I could return that night.  (And its fortunate that I did because my original flight out of Rochester was cancelled so if I had stayed with my original travel plans, I would have had to spend an extra day.)

While I was there, I got to meet Joanne, another Amyloidosis patient who is there for her stem cell transplant.  We met for coffee on Sunday and it was great to meet someone else fighting the same fight.  Her attitude reminds me a lot of my own and it was encouraging to meet another person who fully expects to beat this disease.  On Monday, she was getting her stem cells harvested and I stopped by for a visit.  I was there as they finished the harvesting and her husband took a picture of us posing with the magic potion that will send her into remission.

The trip was a great way to close out a crazy 2013.  (You can see more photos from the trip here.)  When I look back on the year, I am amazed at the roller coaster.  Yes, I lost my father and father-in-law; yes, I was diagnosed with and treated for a rare, incurable blood disorder; and yes, at each step of the way felt the love of God and so many friends and family members.  While the diagnosis was shocking, I was on the path to treatment three days after diagnosis and felt the peace and confidence from God the day after I was diagnosed.  I am so fortunate to have expert care available locally and have a physician who is just as caring as she is knowledgeable.  Check out this video of Dr. Efebera for some insight.

Yes, I had three weeks of chemo prior to my month long hospitalization but the timing worked out so I could go on our family ski trip between the chemo and admission.  I still can't believe what a blessing it was that I had the strength (limited as it was) to ski every morning we were in Colorado returning home 9 days before my admission.

I was also able to attend the Fleetwood Mac concert with my daughter and son-in-law, Amy and Sean, and my dear friends Allyn and Jasper on April 4, four days before my admission.  Yes it was a challenge due to my abdominal swelling and edema in my legs but I did it and really enjoyed it.

Yes, I missed all of Claire's freshman lacrosse season in which she was the second leading scorer on her team and made 1st team all-conference and second team all-district.  But, since Alan was off work on Family Medical Leave, he was able to attend all of them which was a rare treat since his work schedule makes it challenging for him to attend her games.  The board for the lacrosse booster association made a photo book for me with lots of pictures and her stats from the season. They gave it to me at the banquet on May 22 which was my first outing after getting out of the hospital. Yes I needed a wheelchair but I made it.

Yes, I had a month-long hospitalization and two months of convalescence but the expressions of love and support from family, friends and coworkers was innumerable.  Visits, gifts, cards, prayer, positive vibes, meals, milkshakes, encouragement....so many expressions of love that I still get teary-eyed when I think about it.  Yes, it was a scary time but it was filled with so much love.

The second half of the year was an ongoing progression toward normalcy.  Even though I was still recovering, I was able to do a lot of "normal things" like:

• travel to Claire's lacrosse tournaments in Virginia and New Jersey in June and July (and I didn't need the wheelchair or walker with seat that the physical therapist thought I might need)
• enjoy visits from several dear friends--Allyn and Jasper who came up from Virginia, my college roomie Deb before she moved to Mexico and my former boss Monica who lives in Australia but was in Ohio visiting family
• attend the wedding of Allyn and Jasper's son in California in August (and eat some Cronuts!  Thanks for the reminder, Jasper)
• go to Cedar Point for 2 days.  We drove up at 7am on Saturday and I stayed at the park until it closed at 10pm (with one little nap in the afternoon--Al took one, too.)  I learned how to pull myself out of a fainting spell during the first drop on this roller coaster when we were in the front row and I wanted to do the entire ride with my hands up. Underestimated the effect of the diuretics I was taking at the time and started to faint but pulled myself out of it.  My new trick I learned from my illness.
• take Claire on a lacrosse recruiting visit to San Diego in September
• attend a few days of the President's Cup golf tournament in October with Allyn and Jasper
• attend the Teradata Partners Conference in Dallas in October for the entire week and was able to meet all my committee obligations
• take Claire and a teammate to a lacrosse tournament in South Carolina in October (without Alan)
• take a business trip to United Healthcare in November to discuss their challenges in using customer data (somewhat ironic since they're my health insurance company.  I did keep the card for their Chief Customer Officer...just in case)
• spend a weekend baking Christmas cookies at Cookiepalooza with my sisters
• hike 10 miles during our Thanksgiving trip to Hocking Hills
• visit Allyn and Jasper in Blacksburg for Claire's annual gingerbread making and drive back in an ice storm (without Alan)
• go to the Mayo Clinic.

As I look to 2014, I've decided that as of 12:00:01 tonight, I am no longer sick.  I'm leaving Amyloidosis in 2013.  I knew going in that I would beat it and I have...at least for a time.  Now, I'm not going rogue...I will stay vigilant about my follow-up care and monitoring for any sign its returning but the sense, the attitude that I have an illness will stay in 2013.

Tomorrow, I will have my usual White Star champagne with strawberries and the black-eye peas that are currently cooking in the crockpot.  The black-eye peas are a southern tradition.  They're supposed to bring good luck but I don't think I'll need it.

"Enough, enough now"

I've been thinking a lot about my trip to Mayo and what I'm hoping to get out of it.  Of course, I have a document with a list of questions...that I keep on my Google drive so I can add to it whenever I think of a question...but I want to be prepared with a well-thought out answer if Dr. Gertz, or someone else asks me, why I'm there.  I think my answer will be...

1. Confirm the diagnosis of Smoldering Multiple Myeloma (SMM).  If it is confirmed, I'd like to know find out my risk for progression to Multiple Myeloma.  If its not confirmed, I want to discuss the pros and cons of the Revlimid maintenance.
2. Hear his perspective on long-term prognosis, risk for relapse and how to identify a relapse has occurred.
3. Discuss the liver and kidney organ response.

I'll go with those 3 because his answer will most likely cover a lot of the random questions I have (What is the prognostic significance of my t(11;14) translocation and 13q deletion found on the cytogenic study?) plus people like things to be in groups of 3.  Those of us who grew up on Schoolhouse Rock know its the magic number.

I'm sure I'll have many more questions but those are the big conversation starters.

My real goal is to leave Minnesota...or when I have my final consult with Dr. Gertz...with the information and confidence I need to fully enjoy this current period of remission and recovery.  Don't get me wrong, I'm pretty happy and surprisingly not worried about my disease.  When people ask me whether Alan is going with me and I tell them he's not, many people seem a bit incensed by that.  But, this isn't a trip where I'm fearful or facing an emotional situation.  It's almost like a business trip...just gathering those last few pieces of information so my Strategic and Self-Assurance strengths I discussed in the last post are fully functioning.  

Yes, I know my ultimate assurance is not from Self but from God and I run the risk of creating myself, my doctors or my knowledge as a false idol that occupies a place that is rightfully God's.  My peace about my disease, my acceptance of either diagnosis (with or without the SMM) and, my belief that God is in control and whatever I do or my doctors do cannot undo God's dominion over this give me confidence that I have God in His rightful place as I go through this.

I was chatting with a colleague at work today who serves on the board of a local Multiple Myeloma fundraising group.  She's been a wonderful supporter, confidante and guide as I've gone through my treatment.  When I told her about my trip to Mayo, she said that Dr. Michael Caligiuri, CEO of the James Cancer Hospital, will tell you to get treated by an expert and always get a second opinion. 

The second opinion part is pretty clear criteria but how do you define "an expert"?  Is it the best in your town, state. region, country, the world?  I know that Dr. Efebera is an expert...but Dr. Gertz is a more experienced expert...or is he more of an expert?  As I wrestled with this idea, the question of "How much is enough?" came into my mind.  When is my information enough, when is the expertise of my medical team enough?  It just feels like its a big brain teaser I'm trying to figure out.  At some point, I hope its enough.

These thoughts of "enough" made me think of one of my favorite scenes from my on of my favorite movies.  It's a scene about knowing when you've done enough and knowing its time to move on.

(Click here to see the video on mobile-- http://youtu.be/dNJe7LmPbvU .)

I'm hoping I leave Mayo with a sense of "enough."  Now, I don't think Dr. Gertz and I actually will re-enact the scene (mostly because he'd have to be Keira Knightley and I'd have to be Andrew Lincoln and that's just weird.)   But, I am hoping to walk away with a sense of "enough, enough now."

Send your prayers and positive vibes that I can achieve that.  It would be a great feeling with which to start 2014.

Six Months

Its been a good week for me!  I had an appointment with my hematologist/oncologist on Thursday and it was good news across the board.  There are two types of response that show progress against the disease--hematologic response and organ response.  My hematologic response is still good showing the disease is in remission.  And, when I asked her directly if my transplant response was a complete response or a very good partial response, she reviewed my results and said it was a complete response.  Granted, the studies show there's no significant difference in overall survival between the two but I guess I feel better knowing it was the best response that could be achieved.  Yes, I even compete with myself!

My organ response is also very positive.  My liver function is improving and my tests showed normal liver function in two of the three key liver function values and the one that has improved 67% from its highest level.  Granted, I still can't lie comfortably on my stomach (which used to be my favorite sleeping position) but I can feel the size improving and I'm hopeful that one day I can sleep on my stomach again and do the Superman/Banana exercise from P90X.

My kidneys are also showing good response to treatment.  The major sign that my kidneys were damaged by the amyloids was the amount of protein in my urine.  The kidney doctor explained that the amyloids pry open the filters in the kidneys allowing protein to leak out into the urine that would normally stay in the blood.  When I was diagnosed my urine protein was 36 times the upper level for normal.  The test this week showed it had improved by 50%. Granted it's still 19 times above the normal limit but a study I read said that the average time to a 50% improvement is 11 months and I got there in 8.  Hopefully, I'll continue to have great progress on my organ response.

Today, I was able to go to one of the workout classes I attended regularly before I got sick.  It's the "Total Body Workout Class" taught by Renee Phillips at the Dublin Rec Center.  I had been going to her core class on Tuesdays but wasn't sure I was ready for the aerobic component combined with the core work that she puts us through in the TBW class.  I was able to keep up really well.  Granted, I wasn't as strong as before but I was able to do about 75% of the exercises and reps and felt really good.

It was nice to see some of the women who I attended class with previously.  They were really happy to see me back and noted how good I looked and how well I did in class.  Their encouragement meant a lot to me.  As I talked to one of the women, I told her that I wanted to work hard to get back into shape in case I need to have another stem cell transplant.  She admonished me not to think that way but I'm not doing it out of fear.  Its really something I feel I can do now to put me in a better place to deal with this disease in the future.  One reason my transplant went so well (relatively speaking) is because of my "excellent performance status" to use the term found throughout my medical record.  I need to get back to that level of physical fitness.

That sense of doing things now so I can deal with this disease in the future is what's motivating me to go to the Mayo.  I trust Dr. Efebera completely.  But I feel that having another physician who is experienced in amyloidosis and knowledgeable about my case will be another source of information for me.  I can integrate that information into my decision making algorithm.  It's the basic predictive analytics process and while I may not be building a huge data set or developing complex statistical models, I still need to have a base of information that is organized and synthesized from which I can make decisions.

In the corporate world, we spend a lot of time trying to figure out how to get individuals to work together effectively.  One of the tools Nationwide uses is the Strengthsfinder survey offered by Gallup.  Its an online assessment designed to help people uncover their hidden talents.  When I took the test last in the summer of 2012, these were my top 2 strengths--

Strategic
People who are especially talented in the Strategic theme create alternative ways to proceed. Faced with any given scenario, they can quickly spot the relevant patterns and issues. 

Self-Assurance
People who are especially talented in the Self-Assurance theme feel confident in their ability to manage their own lives. They possess an inner compass that gives them confidence that their decisions are right. 

I think those two strengths really influence how I go about managing my disease.  I need information to spot the relevant patterns and issues.  Once I have that, I'll have the confidence I need to manage the disease and trust my decisions.

Another good part of this week is today is exactly 6 months after my birthday.  Many of you who are my friends on Facebook will recall the picture that my friend Erin posted of me at the birthday celebration she had for me at her house.  I know a lot of people were surprised by the photographic evidence of how hard the disease and transplant had been on me.  I had Claire take a picture of me tonight so I could look at the progress side by side and I'd say its pretty good.

OK, so maybe the makeup I'm wearing now helps but I don't think its responsible for the majority of the improvement.

Whether its my overall health, physical appearance or physical fitness, I know I'm not fully back to where I was before I got sick but I'm so thankful for the progress I've made.  It's been a team effort between my willingness to work hard (and Alan's efforts early on to make sure I did the work), the care from my amazing physicians and staff, and God's faithfulness that has brought me so far.

I can't wait to see what the next 6 months hold!

What a difference a year makes!

I had a wonderful Thanksgiving this year.  In so many ways, it was like last year's Thanksgiving--renting a cabin in Hocking Hills, spending time with Alan's brother David and his family, beautiful hiking and lots of good food.  But in so many ways it was totally different because of how I felt.  Last year, I was sick but didn't have a diagnosis and spent a lot of time talking to David, who is an Internal Medicine physician, about what might be wrong with me.  I was feeling poorly and worried about what might be wrong with me.

This year, it was a wonderful time. Not only was David and his family there, but the sisters of David's wife Karen and their families were there, too.  These are the ladies that I bake Christmas cookies with each year--Cookiepalooza.  They have become my sisters over the years and were instrumental in supporting me through my transplant and recovery.  They sent wonderful notes, gifts and care packages to me, visited me often, cooked for Alan and Claire and lifted us all up in prayer.

There were 13 of us in a wonderful cabin located near some of the most scenic hiking in Ohio.  The cabin was great, the scenery was beautiful and the company was even better.  It's located about 1-1/2 hours away from Columbus.  Alan, Claire and I got down there Thursday morning because Alan worked Wednesday night.  I picked him up from work Thursday morning and we drove down.

It was so emotional after the prayer before dinner.  To think about where I was a year ago and everything I've been through in that year and how far I've come was overwhelming.  And then the hugs and words of love and thanks from my adopted sisters, my brothers in law and, of course, Alan and Claire, brought out the true spirit of Thanksgiving.

Friday, we went on a 10-mile hike through three of the park's areas--Old Man's Cave to Cedar Falls to Ash Cave.  It was a beautiful day with a high in the 30s and a clear blue sky.  You can see the photos here.

It was a wonderful time with loving family enjoying so much for which we are thankful.