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.

Liam or Morie

For the longest time, my celebrity crush has been Liam Neeson.

Whether its his work as an opportunist  turned Jewish rescuer Oskar Schindler in Schindler's List, the kick-ass dad in Taken or the sensitive widower in Love Actually, his acting combined with his looks has put him at the top of my celebrity crush list.

But now, he's been replaced by this guy....

Yes, perhaps not as attractive and maybe not as famous as Neeson to the uninformed but to folks knowledgable about research and treatment of Amyloidosis, this guy is a rock star.  This is Dr. Morie Gertz, Chair of the Department of Internal Medicine at the Mayo Clinic and one of the top physicians and researchers in Amyloidosis.  When I called to make my appointment with Mayo, they didn't tell me who my appointment was with.  When I got the letter with the details of my appointment and saw that it was with Dr. Gertz, I felt like I won the lotto.

So many of the studies I've been reading over the last few months have been authored by him.  He's the editor of the book that is considered the gold standard on diagnosing and treating Amyloidosis and he's one of the top physicians in the world at treating Amyloidosis.  From everything I've heard from people treated by him and who have met him, I will love him.  

If he's unseated Liam, I already do.

It's Complicated

I decided to go to the Mayo Clinic for a second opinion on my prognosis and treatment plan.  Mayo is one of the top Amyloidosis centers in the world and with such a rare and poorly understood disease, I thought it was a good idea to have them weigh in on my case.  As someone said on the online Amyloidosis Support Group, "I quickly learned that the doctors that wrote the articles and books do know a lot more about Amyloidosis than the local doctors that read their articles and books."

Granted, my doctor is much more informed than the average local doctor but her primary research focus is Myeloma...related but a separate disease.  She's presenting 6 papers at the American Society of Hematology meeting next month--4 on Myeloma, 2 on complications from stem cell transplants, 0 on Amyloidosis.

Given that I have met my out of pocket maximum for the year and Mayo is considered in-network for my insurance, it was important to get the appointment done before the end of the year.  So, I fly from Columbus to Rochester, Minnesota on Sunday, December 29th for my appointments on Monday, December 30 and Tuesday, December 31.

To prepare for the appointment, I needed to get a copy of my entire medical record from Ohio State, copies of all my radiology studies (3 ultrasounds, two CTs, two MRIs and an echocardiography) and the actual glass slides from my biopsies. I was worried how long that would take so I went on Monday and put in my request.  They pulled together the copy of my medical record--all 350 pages of it--while I waited.

I have access to lots of test results and other information on-line but it doesn't include any of the info from when I was an inpatient.  Reading through the inpatient notes was really interesting.  Some of the info I remembered, some of it brought back memories and some of it I had no recollection of at all.

It was interesting to read through it, especially the doctor's notes.  During one of my appointments in June, Dr. Levin described me as "a thin chronically ill appearing but animated middle aged woman."  Even at my lowest point physically, I still had some life in me.  Can't keep me down!

I found two things in the medical record that caused me some concern.  I always thought, based on my reading and guidance from folks in the support group who've had this disease lots longer than me, I had achieved a Complete hematologic response.  But my doctor's notes only list a Very Good Partial hematologic response.   At first I was a little concerned because of this graph--

But, the article that goes along with the picture says "Patients achieving a CR or VGPR after HDM/SCT, as defined by the new criteria, had indistinguishable OS (overall survival) and EFS (event free survival), with median OS exceeding 9 years."  Ok, so I'll take that.

The other thing I found that was concerning was a diagnosis of Primary Amyloidosis with Smoldering Multiple Myeloma (SMM).  So it's not enough for me to get a rare disease that is only diagnosed 3,000 times per year in North America, I also get an add-on bonus feature of the possibility of developing Multiple Myeloma.  That's what is complicated.

But, one of the people I met through the online support group said that he had the same diagnosis from his local doctors.  He went to Mayo and Dr. Gertz, who is one of the world leaders in Amyloidosis research and treatment, cured him of the SMM in a few minutes.  He said Dr. Gertz looked at all his test results and determined the other doctors were incorrect and the only issue he had was Amyloidosis.  I sure hope that's what happens with me.  I never thought I'd look forward to getting another diagnosis of Amyloidosis but given this complication, I'm hoping for it now.

My flight back from Mayo lands at 11:59 PM on December 31.  Getting the Amyloidosis only diagnosis would be a great way to close out 2013 and move into 2014 with even more hope than before.

One of the songs I've been listening to a lot lately is "Come Thou Fount of Every Blessing" by Sufjan Stevens.   It's a classic hymn with the words written in 1757.   One of my favorite lines is "Here I raise my Ebenezer;  Hither by Thy help I'm come;".  What's so great about raising an Ebenezer?  This information I found online seems to explain my basic understanding of the line--

In 1 Samuel 7, the prophet Samuel and the Israelites found themselves under attack by the Philistines. Fearing for their lives, the Israelites begged Samuel to pray for them in their impending battle against the Philistines. Samuel offered a sacrifice to God and prayed for His protection. God listened to Samuel, causing the Philistines to lose the battle and retreat back to their own territory. After the Israelite victory, the Bible records: “Then Samuel took a stone and set it up between Mizpah and Shen, and called its name Ebenezer, saying, ‘Thus far the Lord has helped us’ ” (1 Samuel 7:12). 

The word Ebenezer comes from the Hebrew words ’Eben hà-ezer (eh’-ben haw-e’-zer), which simply mean “stone of help” (see Enhanced…, 1995). When Robinson wrote his lyrics, he followed the word Ebenezer with the phrase, “Here by Thy great help I’ve come.” An Ebenezer, then, is simply a monumental stone set up to signify the great help that God granted the one raising the stone. In Robinson’s poem, it figuratively meant that the writer—and all who subsequently sing the song—acknowledge God’s bountiful blessings and help in their lives. 

The next time you sing about raising your Ebenezer, you will be able to “sing with the understanding” that you are acknowledging God’s help in your life (1 Corinthians 14:15).

So, regardless of what happens I'll raise my Ebenezer--acknowledging God's bountiful blessings and help in my life.  I guess I need to find a big rock!

t(11;14) Translocation

Over the last few days, I've been loading an Excel spreadsheet with lab values from key tests that show whether my Amyloidosis is under control and whether my liver and kidney function are improving.  The key test is the Serum Free Light Chain Assay that measures how much of the bad protein my body is producing.  One item I wanted to include were some of the values from my bone marrow biopsy.  It's nice to have all this information in one place so, as I read studies in the medical journals that reference lab values at different points in time--at diagnosis, after transplant, etc.--I have them in one location.

As I was reading the report from my bone marrow biopsy, I found this entry--

FISH analyses on this sample were positive for loss of the probes for 13q and positive for a t(11;14).  These abnormalities were not seen in the banded metaphase analysis.

I've learned that when a pathologist takes the time to include additional notes with the word "abnormalities" its probably a good idea to understand (as best as I can) the abnormalities.

FISH stands for fluorescent in situ hybridization and, according to Wikipedia, is used to detect and localize the presence or absence of specific DNA sequences on chromosomes. I couldn't find too much on my missing probes for 13q but what I found for t(11;14) wasn't very encouraging.

t(11;14) translocation means that part of my 11th and 14th chromosomes have swapped parts.  It's considered to be an acquired translocation as opposed to one that has been present since conception.  I did some medical literature searches on the impact of t(11;14) translocation on Amyloidosis and found an article from 2009 entitled "Translocation t(11;14) and survival of patients with light chain (AL) amyloidosis".  It was published in Haematologica, the hematology journal of the European Hematology Association.

Some of the highlights, or rather lowlignts from my perspective, include the following statements--

• The risk of death for patients harboring the t(11;14) translocation was 2.1 (CI 1.04–6.4), which on multivariate analysis was independent of therapy.
• Although preliminary, our data would suggest that cIg-FISH testing is important in patients with light chain amyloidosis and that t(11;14) is an adverse prognostic factor in these patients.
• On Cox multivariate modeling the t(11;14) translocation retained its significance despite the addition of treatment administered.
• On multivariate analysis, the hazard ratio for death for patients with this abnormality was 2.5 times that of the other patients without this abnormality.
• One can speculate that the indolent nature of the t(11;14) clones – and perhaps their relative resistance to chemotherapeutic intervention –may explain our findings.

So, to translate some of the clinical study language for those of you not familiar with reading this genre of literature---

• on multivariate analysis was independent of therapy=regardless of the type or effectiveness of treatment, it's bad to have this
• adverse prognostic factor=it's bad to have this because people with this don't do as well as those without it
• hazard ratio for death for patients with this abnormality was 2.5 times that of the other patients without this abnormality=people with this die at 2.5 times the rate of those without it so it's bad to have this.
• relative resistance to chemotherapeutic intervention=chemo is the last line of treatment in Amyloidosis after relapse following two stem cell transplants (two seems to be the max I see people receiving), so if this makes the amyloidosis resistant to chemo then there are no effective treatment options after relapse when stem cell transplant isn't an option so it's bad to have this.

Now, this study was based on only 56 patients who were diagnosed between 1998 and 2006 who had the FISH test panel performed.  They started with over 500 patients but only 56 had the test done so it's not like it was based on a large population.

I have a lot of questions for my oncologist during our appointment in December.  I'm looking forward to hearing her perspective on this.  She always tries to be so encouraging and reassuring that I'm sure she'll tell me not to worry about it.  I think her perspective is that each person's disease progresses in a unique way and understanding whether the progression is from a chromosomal abnormality or something else will have little effect on how she goes about treating the disease.  I love her strong focus on only using information as a rational basis for action.

It's been a rough week at work with a lot of challenges and I've been working through them with this t(11;14) translocation thing in the back of my mind.  It does help me keep work problems in perspective.  When Alan asks me how my day at work went, regardless of what happened, I can say, "My free light chains are still under control so everything else is good."

I know that God can overcome the "adverse prognostic factor" that this chromosomal translocation introduces.  I just need to pray, trust and believe.  It's worked so far.

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!

Shan yao, bamboo leaves and watermelon rind

I went to my acupuncturist this week to see if she might be able to help with my abdominal bloating.  Its gotten to the point that pants that fit at the beginning of the day feel like a vice as the day goes on.  I started to go to acupuncture when I broke my arm a few years ago and ended up with frozen shoulder.  Acupuncture was a miracle cure, fixing what traditional physical therapy could not.

I go to the Acupuncture Healing Clinic.  Dr. Zhang was trained in China, has US acupuncture credentials and is a clinical assistant professor in the Integrative Medicine practice at Ohio State.  She knows her stuff and is a no-nonsense person.

I had seen her a few times last winter to help deal with some of the symptoms from the amyloidosis but hadn't seen her since I got out of the hospital.  She asked me about the transplant and the prognosis.  After I finished telling her about it, she said (in her very strong Chinese accent) "You'll do fine, you're a very strong lady."  Yeah, I get that a lot, I thought to myself.

She said she thought a few acupuncture treatments could help with healing my GI tract and helping me not retain water.  She went about placing the needles in my abdomen, thigh, calf, head and ear.  The head and ear ones are for relaxation.

After I was done, she gave me a list of foods I need to add to my diet: shan yao (Japanese potato), bamboo leaves and watermelon rind.  She said all of these would help soothe my GI tract and help with fluid balance.  So, Alan was off that day and out running errands so he went to the local Asian market to get the potato and bamboo leaves.

I haven't eaten the potato yet.  I found a recipe for shan yao and lemongrass soup.  It sounded pretty good and looked simple.  I've made a tea out of the bamboo leaves and its OK.  Kind of like grass-flavored water.  Tonight I'll cut up the watermelon, use the red part in my juice and chunk up the white part to eat as a snack.  I like jicama and watermelon rind is pretty similar to that in taste and texture.

I'll have several sessions with her and hopefully it will help.  If it does help, it could just be that it was only a matter of time but I'm willing to try anything to contribute to my recovery.  While I don't understand it, I appreciate the ancient wisdom that's contained in acupuncture.

My next adventure in my recovery is to attend a restorative yoga class.  Friday evening I'll be attending this class at Yoga on High.  The description says:

Otherwise known as the art of relaxation, restorative yoga postures melt away physical and mental tension and deeply rest the mind and body. They also assist the body’s processes of healing injuries and recovering from illness by releasing tension that would otherwise impede recovery. Join Gail Sky, a certified advanced Relax and Renew ™ teacher and Master Level Reiki practitioner, for a weekly dose of Restorative Yoga. Receive some Reiki as well, if you like. Please bring an eye pillow if you have one. No yoga experience necessary.

Now, where can I find an eye pillow?!?!?!

Psalm 40

The last few weeks since my last post have been really great.  Not that anything in particular has happened that's great, but its just been a steady stream of "normal."  I'm back at work on a regular schedule and feel like I'm back to being productive and contributing to the work of my team.  Its been nice to have the work and all the relationships I have there returning to normal.  Its not the same as before because I've taken the time away as an opportunity to focus my work time on the most meaningful things possible so its been even more rewarding.

One opportunity I've taken advantage of is becoming a mentor to a 3rd grader through Big Brothers/Big Sisters Project Mentor.  I'll spend 50 minutes each week with a student at the K-6 Science, Technology, Engineering and Math school located in an impoverished area of Columbus.  There will be a group of us who leave Nationwide during lunch one day each week.  We'll board a bus, head over to the school and work with our mentee on reinforcing academic skills.  I'm really excited about the opportunity to do this.  I figured if Nationwide could get by just fine with me being gone for 3 months straight, they can certainly survive with me being gone for an hour and a half in the middle of the day each week.

While Columbus is a pretty progressive (compared to the rest of the midwest) and diverse city, its not very integrated as this racial dot map from the 2010 census shows.

I'm really looking forward to getting out of my suburban cocoon and helping a young student become a data nerd like me...perhaps, a girl can hope.  But at least, help them through the stress of the standardized testing of 3rd grade and help them improve their performance in school and/or appreciation of learning.  And, as has happened every time I've done something like this in the past, I feel more blessed and enriched than the person whom I'm supposedly serving.

Another piece of normal was going to Cedar Point over Labor Day.  Because of my recovery, our only travel over the summer was to Claire's lacrosse tournaments.  While we enjoyed our time together, all the trips consisted of was driving long distances, sitting in the heat and rain to watch lacrosse and, occasionally, catching up with old friends like Jay and Mark in Richmond and Christine and Jim in Philadelphia.

So, we decided to end the "Summer of No Fun" with a trip to Cedar Point.  We all love riding roller coasters and there's no better place to do that than Cedar Point.  We left at 7 am on Saturday.  We got to the hotel around 9:30, checked in, got our tickets and hit the park.  I was concerned about my endurance and whether I'd be able to last as long as the others.  Yes, Alan and I both went to our room mid-afternoon for a little siesta but I was still going strong as we walked out of the park at closing time.  I rode all the roller coasters, some more than once, and really enjoyed myself.

I told Alan as we were walking out how nice it felt to do something normal and to not feel limited by my disease or recovery, at all.

I started my maintenance chemo the day we got home from Cedar Point.  Its a pill that I take once a day that, according to Dr. Efebera is "very well tolerated."  I remember her words of encouragement about how well I would do with the transplant and how enthusiastic she was about how well I was doing after the transplant.  I know her standard of the word "well" and my standard of the word "well" are not exactly in snych.  I was concerned that I would experience some of the major side effects.  Some people have had such debilitating side effect that they had to discontinue the treatment.  That would have been very demoralizing for me. But, the good thing is that I've been on the treatment for almost 2 weeks now and haven't had any noticeable side effects.  Yay!!

Another normal activity was going to see my dear friend Tami who happens to be my hair stylist.  I've been going to Tami for almost 7 years and have followed her through 4 different locations.  We talked about whether to color my hair (we decided not to) and she trimmed it up around my neck and ears.  Tami is a strong Christian woman and our conversations always focus on faith and family.

We talked about my disease and recovery and how God could use what has happened to me for His purposes.  Tami is always so generous with her praise and encouragement and Wednesday night was no different.   She said that she believes that since I'm in a leadership role at work, interact with a lot of different people and because I'm so outgoing and open about my illness,  my testimony of faith in God and the love from others will help people see the power of a real relationship with Christ and the care of a Christian community.

As I thought about that during my evening prayers, one of my favorite Psalms came to mind.  Its Psalm 40 and its one of my favorites due in no small part to the song by U2 called "40."   This song is always part of my church's U2-charist that we hold at our town's Irish Fest.  I listened to this song a lot in the hospital and during my recovery.  I really like the New Living Translation of this Psalm and feel that these verses capture my view of my disease and recovery--

Psalm 40

For the choir director: A psalm of David.

¹ I waited patiently for the Lord to help me,
    and he turned to me and heard my cry.
² He lifted me out of the pit of despair,
    out of the mud and the mire.
He set my feet on solid ground
    and steadied me as I walked along.
³ He has given me a new song to sing,
    a hymn of praise to our God.
Many will see what he has done and be amazed.
    They will put their trust in the Lord.

As I was driving home today, I got a call from Tammy (yes another Tammy) one of the Nurse Practitioners at Dr. Efebera's office.  She said that they have a patient recently diagnosed with Amyloidosis and asked if I'd talk to her.  Tammy said the woman is only 46, very energetic and has a lot of questions about the disease and treatments. Tammy said that this woman reminded her a lot of me and she thought I might be able to help her out by sharing my experience and perspective.  Of course I said I'd love to help and told Tammy to give her my contact info and a link to the blog.

When I got home I had one of the most meaningful notes I've ever received.  The note was from Bethy, the daughter in law of my friends Allyn and Jasper.  Or, perhaps I should say the wife of my friend Reid.  I still remember when he was in high school and corrected me when I introduced him as my friends' son.  He said, "Aren't we friends?"  He's always been quite the charmer and has a very kind heart...rare combination.

Bethy's been dealing with some health issues of her own and we've been trading Facebook messages about our health issues over the last few months offering words of encouragement to one another.  We had the opportunity to catch up while we were in Santa Monica at the end of August for the wedding of Allyn and Jasper's other son, John.  In her note, Bethy commented on how much genuine love and concern she felt from me, Alan and the rest of the family as we asked her how she was doing, told her how much we care about her and told her we were praying for her.  Isn't that really what Jesus would do?  Show genuine love and concern to someone who is suffering.  I know my illness has helped me be much more caring and compassionate to those who are in need.

Whenever I'm trying to figure out God's purposes, I pray, I read scripture and I look for confirmation from the people God puts in my life.  

Looks like I got that confirmation this week.

"I'll Never Take Anything for Granted Again..."

"I'll Never Take Anything for Granted Again..." is the title of a magazine article describing actor Michael York's battle with amyloidosis.  Michael York has been in a ton of movies including Cabaret, Logan's Run and, most recently, as Basil Expedition in the Austin Powers movies.

He underwent a stem cell transplant at Mayo Clinic in July of 2012 and says in the article that his energy is returning 6 months after the transplant.  He refers to his facial bloating and lack of hair.  I found a photo of him on the internet that shows how the disease has affected him.

He said his swollen face is partly due to his meds but also from the disease itself.  "There are deposits all over," he said.  Boy, do I know that feeling.   Based on what I can tell, the photo above was taken 9 months after his transplant....so I'm doing OK with the hair growing.

Here's a photo from the wedding we went to last weekend in Santa Monica.  I have more hair than appears in the photo because it's pretty grey and the light in the photo washes it out.  When someone comments on how grey my hair is, I steal Al's old line, "I don't care what color it is, as long as it comes in."

It was really interesting to see the similarities between how the disease affected his relationship with his wife and how it affected my relationship with Al.   He said, "I discovered just how very much I love my wife [celebrated photographer, Pat York]. She’s been amazing. Like a lioness. She was so proactive. She had all the questions for the doctors, and she knew the answers – she’s queen of the internet. What she did was such a powerful thing. She’s always been so positively behind me. We have a great relationship. I’ve been very, very lucky."  All of that is true for Alan except being queen, or in his case king, of the internet.  He still gets confused between a search engine and a web browser--"I don't want to use Chrome, I like to use Google." smh

York first knew something was wrong when he had dark circles under his eyes that wouldn't go away.  The medical term for that is purpura and I've had my own battles with that.  Fortunately, I never had it around my eyes which is common among amyloidosis patients.  Mine has been mostly on my arms (and mostly my right arm) and on my chest.  Mine show up as purple spots about the size of a pencil eraser.  I've had up to 12 spots on my chest and 8 on my arm at any one time.  Right now, all of them are fading and I haven't had any new ones show up....touch wood, as Michael York would say.

As each day passes and the physical reminders of my illness fade, I'm more able to leave behind the worry of my disease that has so consumed me at points of my recovery and take the advice offered by my amyloidosis buddy Michael in this Austin Powers video.

"I suggest you don't worry about this sort of thing and just enjoy yourself.  That goes for you all, too."

Oh, and here's another photo from the wedding.  That's the face of me...and Al...not worrying and just enjoying ourselves.

How P90X and Renee Phillips Saved My Life

This is a post I've been wanting to write for some time now.  As many of you know, I completed the P90X program in the winter of 2010.  I used P90X and Renee Phillips' workout classes at the Dublin Rec Center to stay in shape after completion.  I got into really good shape for a then 48-year--old.

I didn't stay in that good of shape but I was pretty trim and muscular up to the point I got sick.  As many of you know, the first sign I knew I was sick was when I discovered my liver was enlarged.  I found this one night when my stomach was hurting and I was pressing around on my abdomen and felt this hard mass.  I asked my husband (the ICU nurse) to come over and feel it and he said, "That's your liver and its not supposed to be like that."

As I've said before, I was so fortunate they caught my disease before it had progressed and caused permanent damage to my liver and kidneys.  If I hadn't been in such good shape and so trim, I probably would never have started on my quest for a diagnosis.  And once I did, it probably would have taken them longer to come up with a diagnosis without the key info that my liver was enlarged.  The only reason I, and my physicians, could feel that my liver was enlarged was because of all the exercise I had done in P90X and Renee's workout classes.

So, I don't expect everyone to go out and do P90X or go to Renee's classes (although you'll love the results if you do) but let me be an example.  According to my doctor, my recovery would be so much more difficult if I wasn't in such good shape going into the chemo and stem cell transplant.  And it was pretty damn hard.

I don't want to be a downer but take your physical fitness and your health seriously.  You never know how it will benefit you beyond just looking and feeling GREAT!

Another Step to Normal

I took another step to normal today by going on a "big girl" bike ride with Alan.   I've gone on a few rides on Claire's cruiser bike..

Its a nice bike but its not made for a workout.

It was nice to get back out on my road bike with a cycling jersey, bike shorts and my clip-in cycling shoes.  We set out to ride around Glacier Ridge Park near our house.  It has a nice trail that winds through the park's wetlands, woods and prairie.

I completed the 9.5 mile with an average speed of 12.4 mph.  Not too bad for my first real ride and a good start to get me ready for the 75-mile Pelotonia route next year.  My biggest worry was that I wouldn't get my shoes out of the clips when I stopped and would fall over. Sad to say, its happened before.

But, I made it through with no problems.  It was a lovely afternoon.  Feeling the wind and the sunshine on my face and hearing the birds sing really made me glad to be alive...even more glad than I usually am these days.  :)