The Lurking Bear

I read an article last week, Life after near-death:  why surviving is only the beginning that detailed life after near death experiences.  It really resonated with me and made me reflect on how I'm doing after my stem cell transplant.  Now, maybe I wasn't at death's door but I was a lot closer than I've ever been, say maybe in death's zip code, just passin' through thank you very much.

The article starts out telling the story of Patricia and Trevor who were attacked by a bear while on a hike in Waterton Lakes National Park, Canada.  They were both seriously injured in the attack, requiring extended hospital stays and surgeries, and both were left disfigured.  The article details how Trevor rapidly moved on from the experience and looked to face life as a new man.  Patricia was very fearful and was never able to regain any peace after the attack.

The article describes Trevor's ability to repress his fears and use humor and logic may have helped his ability to move on--

Psychiatrist George Vaillant, in his Study Of Adult Development, found that this type of suppression was straightforward, practical, and it worked. "Of all the coping mechanisms," he wrote, "suppression alters the world the least and best accepts the terms life offers." Contrary to what many psychologists would have you believe, he says, simply suppressing a traumatic experience and getting on with business is "the defensive style most closely associated with successful adaptation". Trevor forced this hard-nosed logic to dominate over emotion, telling his wife, "We won't be attacked again, Trish. We're predisastered." (In quoting from the movie The World According To Garp, he was employing one of the best strategies for successful adaptation: humour.) In the midst of the attack, Trevor recalled feeling distant and philosophical about it. He had seen the bear attack Patricia and was under the impression that she had been killed. When the bear returned to attack Trevor for a second time, he later told his wife that he was convinced he'd die, but his only reaction was curiosity. He thought: "So this is how I die." Patricia's response to the bear was pure panic and terror.

I've used many of those techniques myself in trying to manage my reaction to my disease...my bear...with humor being my go-to response.   I love the predisastered quote. That sentiment is what drives my crazy behavior like not using sunscreen even though I've had five basal cell carcinomas removed and not caring about my cholesterol anymore.  Yeah, I'm living the wild life post-transplant.

I've always been one willing to fight and work hard when needed and I'm rarely intimidated.  I've always been that way, probably due to my brother's attempts to repress me, starting from the moment I was born, to hear my mom tell it. (Help, help, I'm being repressed!)  He taught me early how to stand up to an opponent that, based on appearances, you have no chance of beating.  Thanks Rob!

I really believe that attitude has helped me emotionally and physically.  I've met some patients who have become fearful and retreated from the world when diagnosed with AL Amyloidosis...reacting as Patricia did.  I've met some who have faced it as a big challenge they need to get through and approach it with confidence and optimism...reacting as Trevor did.  I wonder what causes the different reactions.

Patricia was never able to regain a joy in life because she was always afraid the bear was lurking to attack her again.  I can really relate to this feeling due to the relapse rates of AL and Multiple Myeloma.

I often say that AL may be incurable but neither is asthma or diabetes and I'm counting on being able to manage the disease well into my golden years.  The problem is, unlike AL and MM, asthma and diabetes are not continuously evolving in this sinister, genetic mutation arms race trying to gain an advantage.  The bear is out there and, at some point, he may regain his strength and grow stronger and more threatening.

Now, there's a word I see used quite often to describe the plasma cell clone that causes AL.  That word is "indolent".  In medical terms, indolent means 1) causing little pain 2) slow growing.  I knew when I first read that term I had a flashback to Jane Austen or the Bronte sisters or some other 19th century writer and I thought it was applied to a lazy, slovenly character, usually the sort of man that would not be an advantageous match for one of the female protagonists.

I found the character in Pride and Prejudice whom Jane Austen calls "indolent."  It's Mr. Hurst, who married Louisa Bingley.  If you've seen the BBC mini-series with Colin Firth (sigh) it's this guy.  That's how I picture the AL clone, lounging around in the parlor of my bone marrow, drinking wine and eating snacks, not really doing much.  More in line with the non-medical definition of indolent--averse to activity or showing an inclination to laziness.

If I have MM, well, lets just say I've never seen the term indolent used to describe the MM clone.  That guy seems a bit more busy and industrious than our Mr. Hurst up there.  I guess that's why the percentage of plasma cell clones in your bone marrow is part of the differential diagnosis between AL and MM...just how much work has that little clone been doing, knowing that if he's been busy before, he'll get busy again at some point after the transplant.

But, I won't really know what the clone is doing until that activity manifests itself in a relapse.  And I can be like Patricia afraid to move along the trail because I might encounter the bear.  Or I can be like Trevor and get on with my life.  I've said all along, the only thing I can control in my whole situation is the depth of my faith and the strength of my attitude.  If the bear is going to return, all my worry and fear until then will do nothing but keep me from fully enjoying the remission I currently have.  I'm on a trail in bear country, there's no changing that.  I can choose to curl up in a ball and wait in fear, or I can keep moving forward upon this path which God has placed me, enjoying the scenery and making progress in my life until the bear comes back.  I think I'll choose the latter.

In 1993, Amy and I went on a hiking, biking and rafting trip through Yellowstone. One of our guides had served as a bear naturalist with the US Fish and Wildlife Service.  She said that if you encounter a bear on the trail, you should never run.  You should stand up as tall as you can and wave your arms to try to make yourself appear as large as possible and stand your ground.  Now, she did admit the first time she encountered a bear, she turned and ran out of instinct.

I think that's a good metaphor for what I need to do if my bear returns--try to be as big as possible, emotionally and spiritually, and stand my ground.  I pray I'll have the grace to overcome the instinct to turn and run.

Ends of the Earth

Today is my husband's 60th birthday and I've been thinking a lot about our journey together over the last week.   In the midst of this, I've been obsessed with a song that I listen to whenever I can.  It's called "Ends of the Earth" by Lord Huron, an indie-folk band based in LA.  The song is about someone who wants to go explore, and conquer, unknown lands and he's asking someone if they would follow him to the ends of the earth.

The description of the journey struck me as a metaphor for how I see my health journey.  The song starts out with

Oh, there's a river that winds on forever
I'm gonna see where it leads
Oh, there's a mountain that no man has mounted
I'm gonna stand on the peak 

Out there's a land that time don't command
Wanna be the first to arrive
No time for ponderin' why I'm-a wanderin'
On while we're both still alive

It closes with this

I was a-ready to die for you, baby
Doesn't mean I'm ready to stay
What good is livin' a life you've been given
If all you do is stand in one place 

I'm on a river that winds on forever
Follow 'til I get where I'm goin'
Maybe I'm headin' to die but I'm still gonna try
I guess I'm goin' alone 

Here's the video..

(and the link for you mobile folks...http://youtu.be/O42EKFw99yQ)

As I said on Facebook, regardless of what this health journey brings, I know Alan will be with me...pushing me, pulling me, carrying me as needed...while we laugh together at every step along the way.  I know he'll follow me to the ends of the earth and I know I'm not going alone.

Happy Birthday, BPK!

A Time To Mourn

February will always be the month of mourning for me.  Many of you know the challenging February I had last year—the deaths of my father and father-in-law, and my diagnosis with AL Amyloidosis (and eventually Smoldering Multiple Myeloma) all in the same month.

There’s the traditional mourning that accompanies the death of a loved one and that was part of my February.  But my diagnosis cut short that mourning and introduced me to mourning the passage of something else.

Before my diagnosis, I considered myself a pretty strong Christian who recognized that God was ultimately in control of my life.  At the end of the Confession of Sin in the Episcopal service we say, “For the sake of your Son Jesus Christ, have mercy on us and forgive us;  that we may delight in your will,
 and walk in your ways, to the glory of your Name.”  I’ve always appreciated that word “delight.”  I don’t ask God to help me “accept” His will but to delight in it.  That’s a pretty high standard but I’d always felt I was doing a pretty good job at it.

I have found that its really easy to delight in God’s will when God’s will is relatively close to my design for my life—happy, healthy, faithful family; financial security; loving friends.  It’s challenging to delight in a diagnosis of AL Amyloidosis with Smoldering Multiple Myeloma and the health problems and likely reduced lifespan that comes with it.

That sense of security, the expected guarantee that my life design will continue, is lost with the diagnosis of a fatal, incurable disease that has a 96% relapse rate.  Yes, I know, that guarantee was never really there in the first place.  But an illusion that persists long enough starts to feel like reality.  And, so, in the midst of mourning the loss of my father and father-in-law, I started mourning the loss of the life I thought I was going to have.

From talking to others with this disease, many of us progress through the five stages of grief after diagnosis—denial, anger, bargaining, depression and acceptance.  I think one of the reasons I’ve done so well with this emotionally is because I was able to move through those stages pretty quickly.  I don’t think you can be “all in” in the fight until you get to acceptance.

One year ago today, my phone call from Dr. Levin as I drove home on I-270 went something like this, “Mrs. Koontz, I have a diagnosis for you.  It’s a rare blood disorder called Primary Amyloidosis.  Your next steps will be to have biopsies of your liver and kidney and an echocardiogram of your heart to see if and how much they’ve been affected by the disease.  I will need to refer you to a specialist but I don’t know who treats it here at OSU.  I have some phone calls and emails out and will call you tomorrow with the name of someone to whom I can refer you.  Have a great night!”  Ok, he didn’t say “Have a great night” but I can’t really remember what he said, if anything, to close the conversation.

After I got off the phone with Dr. Levin, I called Alan.  I remember I was passing the I-270 exit for Tuttle Crossing when I was on the phone with Dr. Levin and was passing the 33 exit for Avery-Muirfield when I was on the phone with Alan.  I got home, jumped on the internet and was shocked at the prognoses I saw.

Yes, everyone says “don’t go on the internet there’s a lot of misleading information out there.”  But I knew how to find the good information….I work in data and analytics and understand statistics; I did Media Relations for a teaching hospital, writing general media news releases and pitching story ideas about clinical trials going on at the hospital; my husband is an RN with a career of experience in the ER and ICU.  I know how to find the valid information….and the valid information was the scary stuff.  There’s not a lot of false information floating around the interwebs about a rare disease.  Not too many sensational news reports exaggerating the seriousness of the diagnosis....no exaggeration needed.

I remember seeing average survival time of 4 years and thinking I wouldn’t even be around to see Claire graduate from college or know any grandchildren that might come along.  As I reeled from the shock, I kicked my meta-analysis into high gear searching for some hope in the medical literature I was reading.  At the time, I wasn’t aware of the progress that has been made against this disease in the last 10 years and was giving equal consideration to information from 1999 that I was to that from 2012.

But as I read more, I saw such variation in the overall survival estimates and decided I was going to be one of the people on the long tail of the survival curve.  I saw on the Amyloidosis Foundation website that high dose chemo with stem cell transplant “is the most aggressive treatment to date for those who can qualify for it. It is showing a great deal of promise.” I decided the phrase “aggressive with a great deal of promise” sounded like what I wanted.

So, at 10 pm, about 5 hours after I first heard the phrase “primary amyloidosis” from Dr. Levin, I posted on my blog (Relaxin in the Amyloid Oasis) that I had seen a calendar for a stem cell transplant and noted, “It says the process takes 5 weeks but can take up to 8 depending on how well the patient tolerates the treatment.  I told Al, "My goal is to be done in 4!"  :)”

I moved through those grief stages pretty quickly that night and got to a point where I was ready to fight once I had a sense that there was a path to success.  Now, I’m not saying I didn’t cycle back through some stages over the coming weeks and at different points in my journey (because I did), but that night and over the next few days, God gave me the strength to want to fight this.  And the very next morning, He gave me the peace to know that I would be OK. ("It Is Well With My Soul")

Over the summer, as I recovered from the stem cell transplant and wondered if it was successful, I still went through periods during which I would mourn the life I had, or I thought I had, before my diagnosis.  But once I learned I had the best response possible to the transplant, I haven’t done the before and after thing.  Words of wisdom from two beloved believers helped me with that.  First, my daughter Amy admonished me to “live the life God has given me.”  And my friend Jim told me that “my after is now a new before.”  I have a life, there is more to come and I need to look to the future thankful for what I now have, not disgruntled about losing what I thought might have been.

Another period of mourning I’m now experiencing is related to work.  In January, we had a new leader named for my group.  He has reorganized the group and my team of three directors and 25 people has been split up into other teams within his organization so I can take on a new role.  While I’m excited about the new role, there is a sense of mourning for a team and a function that I’ve been working to build over the last 3+ years.  I’ve developed some great relationships with folks on the team and, while the relationships will continue, there’s no escaping that they will change.  You take a job for the work, you stay in a job for the relationships and I’ll miss working closely with the team.

But, if this last year has taught me anything, it’s that change will come and even when I can’t see where the path will lead, I can trust in God’s love and care as I walk the path.  Lately, I’ve been thinking about the passage from Ecclesiastes 3 (There is a time for everything, and a season for every activity under the heavens:  a time to be born and a time to die…) and humming "Turn, Turn, Turn", The Byrds song that is based on the passage.  I was pretty familiar with the section of the passage that lists all the activities for which there is a time but I hadn’t read the whole chapter recently.  I was struck by the verse that comes shortly after—“I know that there is nothing better for people than to be happy and to do good while they live.”

Yes, as I move through this period of mourning and past these one year anniversaries, I will hold fast to that…to be happy and do good while I live.

The Real Slim Shady & Multiple Myeloma

May I have your attention please?

May I have your attention please?

Will the real Slim Shady please stand up?

I repeat, will the real Slim Shady please stand up?

We're gonna have a problem here..

The request at the gala on Saturday night seemed simple enough....."Will everyone with Multiple Myeloma please stand up?" Hmmmm, I wonder if I should stand up, I pondered, as the words from Eminmen's "The Real Slim Shady" crept into my head.  According to my OSU medical record, I have Primary Amyloidosis diagnosed 3/11/2013, I have Multiple Myeloma diagnosed 3/11/2013 and I have Smoldering Multiple Myeloma diagnosed 5/11/2013.

According to Dr. Gertz at the Mayo Clinic, I "do not meet their criteria for Smoldering Multiple Myeloma."  Notice he didn't say that I don't have it.  I've watched several webcasts and videos from The International Myeloma Foundation in which they will have physicians with different perspectives review a set of diagnostic information and discuss what treatment is warranted.  I call these the myeloma battle of the bands.  Mayo is always on the conservative end of the spectrum--don't treat, cost doesn't warrant the outcome improvement, etc.  (Meanwhile, Antonio Palumbo, MD in Italy is almost always advocating to treat.  Those impulsive Italians!)  

So, when Dr. Gertz says I don't meet their criteria, I take it with a grain of salt, knowing that Mayo is very conservative.  It seems there's not a lot of clear cut, agreed upon criteria that separates Primary Amyloidosis (AL), Smoldering Multiple Myeloma (SMM) and Multiple Myeloma (MM).  At the point I started to get fixated on labeling what I have, Dr. Efebera explained that the name doesn't really matter.  She will look at all the clinical information available to her and develop the most effective treatment plan for me, not based on the combination of letters for my disease.

I trust her expertise and judgement and, in theory, her approach sounds great.  The problem with it is the difference in prognosis for someone with the different combinations of the alphabet soup--AL, AL with SMM, AL with MM.  She told me I'm "in a gray area" between AL and AL with SMM.  

Just this week I saw a study from Mayo that said AL patients with greater than 10% bone marrow plasma cells really have AL with MM.  Well, what do you know, my aspirate sample (the liquidy part of the marrow) was 7% but the core sample (from the solid piece of bone marrow) was smack dab on 10%.  And, according to Dr. Efebera, the core sample is the more accurate measurement.  Did the pathologist round up or round down?

I recently read an article in the New York Times entitled "How Long Have I Got Left?"  It chronicles the quest to get a definitive life expectancy figure by a Neurosurgical resident recently diagnosed with lung cancer.

These statements really captured many of my feelings as I've researched my disease and prognosis--

Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely.

But the range of what is reasonably possible is just so wide. Based on today’s therapies, I might die within two years, or I might make it to 10. If you add in the uncertainty based on new therapies available in two or three years, that range may be completely different. Faced with mortality, scientific knowledge can provide only an ounce of certainty: Yes, you will die. But one wants a full pound of certainty, and that is not on offer. 

What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability. 

The writer describes his quest for a life expectancy number.  But before I can even get to a number, I need a name and there's not a lot of consensus in the medical community about the name of my disease, my unique combination of letters.

I know that one of the spiritual lessons from this journey has been trust.  God brings that message of trust before me on a regular occurrence...bordering on annoying almost (sorry, God, but I call it like I see it.)  This mystery about the name of what I have, much less the amount of time that diagnosis is expected to afford me, is just another opportunity to trust God.

I'm doing pretty good about not worrying about my combination of letters.  I will continue to read and study because I am intellectually curious about this.  I'll keep working to regain my strength and stamina so I can feel that I've left the effects of the disease in the past.  My recent trip to Colorado with my sister in law and her sisters (my adopted sisters) was a big step.  I went backcountry skiing for at least 2 hours each morning and kept up just fine.  I went downhill skiing at Steamboat Springs for one day and successfully made it down my favorite black diamond run "Huevos".  You can see the photographic evidence in my Google photo album.  That's really good progress less than 9 months after my stem cell transplant.  Crossing the finish line on my 100-mile Pelotonia ride will be the ultimate expression that I've moved past the impact the disease and treatment have had on me.

I'll continue to live my life one day at a time trusting that, as it was before my diagnosis, my time on earth is in God's hands.  But I do need someone to tell me whether or not I should stand up.

Hospital Memories

This benediction showed up on my Facebook feed last week:

In the quiet of this place, in the dark of the night, I wait and watch. The senses of my heart are awake to you. In the stillness of my soul, I search in the silence of my spirit, O God. (Celtic Benediction)

It reminded me of some of the lonely, scary nights I had in the hospital.  The days were fine because they were filled with a lot of people and activity.  Alan was with me most days from 8 am until 2 pm and then back with Claire between 7 and 9 pm.  Amy came for a few hours every night, as well. What a loving sacrifice from her.  She had only been married for 6 months and would spend her days at her job at Grant Hospital and her evenings with me at The James or Dodd Hall.   But, after 11pm when things slowed down in the hospital, it was me, my thoughts, my music, my prayers and God.

I would stream music from my phone to a bluetooth speaker I brought with me and during some of the nights when I couldn't sleep well, which was most nights between about April 15 and April 28.  I had a playlist of my favorite hymns that was my go to choice.

• It Is Well With My Soul
• A Mighty Fortress Is Our God
• Come Thou Fount of Every Blessing
• Great Is Thy Faithfulness
• The Old Rugged Cross
• How Great Thou Art

These are songs I remember my grandfather singing and have sung a lot myself in church and at Cursillos.  They always took me to a happier time and reminded me who was still in charge.

"It Is Well With My Soul" was one of the first hymns that came into my mind after my diagnosis.  As I explained in this blog post, Jesus told me during my morning prayer the very next morning after my diagnosis that "He's got this" and that promise has held true since that moment.  I've learned that faith isn't digital ie it's on or it's off.  It's much more variable than that.  Sometimes it was full power, total faith, no room for doubt.  But sometimes it was a really weak signal with lots of doubt and fear mixed in.  And, I think God's OK with that as long as I keep seeking Him, no matter how frail my efforts may be.

Many nights I would think of the story of the Cherokee right of passage where the young man is taken into the forest at sundown by his father, blindfolded and left sitting on a stump until the sun rises.  He experiences many fears through the night and when he removes the blindfold in the morning, he realizes his father has been sitting next to him all night.  You can read more about it here.  I felt that way during many scary nights when I was in so much pain and fearful about my recovery.  I knew God was sitting there next to me.  But one night, I started thinking about everyone who was praying for me, thinking about me and sending me positive vibes.  I pictured them as a ring around me on that stump helping to keep anything negative or harmful away from me.  I held on to that image many times through my hospitalization and recovery.

Another memory I have is from a line in "Come Thou Fount of Every Blessing".  There's a line that says--"here's my heart, O take and seal it, seal it for thy courts above."  I remember one night I was pretty doped up on morphine but still in a lot of pain.  When I heard that line I said, "Hey God, while you're in there doing that heart sealing thing, could you maybe work on my liver, kidneys and abdominal swelling?  You know, since you'll have the hood up."  That made me laugh at myself and gave me a little glimmer of hope that I could make it through this with my unique sense of humor still in tact.

Chemo and pain can alter many things but I'm glad my spirit..and sense of humor...have recovered well.

Pelotonia!

Since 2008, Columbus has had a bike ride designed to raise funds for cancer research called Pelotonia.  It's raised more than $50 million since it started.  I've known several folks who have done it and have contemplated riding in the past but....well, you know how it goes..lots of excuses.

I have a few colleagues at work who have ridden and vowed that this year, I would ride.  I've done a fair amount of cycling in the past.  The only organized ride I've been on was the 210-mile, 2-day Tour of the Scioto River Valley...during which I crashed 23 miles from the finish line and broke my arm but completed the ride anyway.  Yes, I really wanted that finisher's certificate.  You can read all the gory details here.)

Back in August, I went on a real ride with Al.  Now, I had been doing some rehab rides on Claire's cruiser bike in June and July as part of Drill Sergeant Al's Convalescence Home (service mark "You'll FEEL The Love!) but August was the only time I've been on my bike since fall of 2012.  I was able to do 9.5 miles at an average rate 12.4 mph.  OK, not exactly 100-mile Pelotonia worthy but that was four months after my stem cell transplant. I'm hoping I'll do a lot better the next time I get on the bike.

Pelotonia has routes you can ride that range from 25 miles to 180 miles.  I've decided I'm going to do the 100-mile route.  I've needed a challenge to get me back to the physical condition I was in before I got ill and I think this will do it.  I'm starting to workout with more strength and endurance guessing I'm back to about 75% of my recent peak.  I'll get the bike on the trainer in the basement and will have a chance to catch up on my Netflix queue since I'll be spending 60-90 minutes down there several times each week.

While the funding for cancer research is important, this ride symbolizes so much more for me...a way to show my strength has returned and to show thanks for all who have helped me along the way.  

You'll see a lot about the ride between now and when its held in August. Please consider supporting my ride.  Click here to donate.

"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.

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?!?!?!

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!