Still Going Strong

I'm writing this post from Sandy, Utah on the last day of a fabulous ski vacation.  My husband, two daughters, son in law and brother in law skied for four days at three different resorts and it was fantastic.  The weather was great--3 days of nice snow and bluebird skies, and one day of constant snowfall.  We are all about the same level skier and so it's fun to just chase each other down mountains.

We stayed at an AirBNB that was awesome.  It was a 4BR, 3Bath home located about 25 minutes from the slopes and 5 minutes from the grocery store.  It has a lovely hot tub and is really comfortable and cozy.  Of course, the best part was just spending time together. Our older daughter, Amy, and her husband, Sean, live in Florida so the times when we're together with them are really special.

We skied at Solitude, Alta (2 days) and Snowbird.  Each day and resort was special. Here are a few photos.

Me and my brother in law (top) and me and my husband

My daughter Amy and her husband Sean

One of the mountains at Alta

Claire, me and Amy

We had the GoPro recording at various points.  I haven't had a chance to compile the overall video but this 45-second excerpt was too good not to share.  Thankfully, Amy is ok.  You can see the care and compassion inherent in our family as we all double over in laughter at her misfortune.  As she watched the video, she commented, "I really like how you're practically contorted with laughter."  :)  Amy's Crash Video

As you might expect, I gather my stats as I ski so I can see number of runs, distance and speed of my day.  I'm proud to say that I set a new land speed record this year.  My previous record was 42mph on the bike, the ski record was 38mph.  This year, I hit 48mph on skis.  Boy did it feel good to be able to go that fast!

This time of year is always a time of reflection for me because I received my Amyloidosis diagnosis on February 25, 2013.  I think back to those scary times when I wondered if I'd ever be able to do active vacations with my family ever again.  I think about the ski trip we took between my chemo and stem cell transplant with the 30 pounds of fluid in my abdomen.  I couldn't even buckle my ski boots but I skied every morning with my family even though I could hardly eat because of the pain from the GI involvement.  I remember the grief I felt when I was too weak to ski down the final day and had to ride the gondola down the mountain.  I wondered if that would be my last act on a ski slope....one of defeat.

But, that wasn't the case and I've been able to continue doing the activities I love--cycling, skiing, and most importantly, traveling with my family.  Several times a week, I see a post on the Amyloidosis Facebook page or an online forum about someone dying from the disease or being permanently incapacitated.  I am so thankful for every day of health I have.  I lost something I took for granted and I try to savor its return every day.

Next month, I'll be speaking with my physician, Yvonne Efebera, MD, to the board of directors for the Foundation of the cancer hospital where I was treated, Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute...aka The James.  My message will be one of thanks, thanks to each person there and the millions of others who have supported cancer research in the past.  Research into my chemo drugs and the use of stem cell transplants many years ago is the reason I can savor my health and the life it affords me.

If you'd enjoy the opportunity to give that gift of health and hope to someone in the future, please consider donating to my Pelotonia ride.  pelotonia.org/kat4gators 100% of all rider donations go directly to cancer research.  To learn more, you can read some of my previous Pelotonia posts here--http://katseyeview.blogspot.com/search/label/pelotonia 

Your donation could fund the research that creates the treatment that returns health and hope to some person in the future.  Let's End Cancer!

Data Crunching

My hospital's online chart system finally added my test results from when I was in the hospital.  This completed my data set for my tests so, of course, I had to do some data analysis.  It looks like this--

• 2008    1
• 2009    1
• 2010    8
• 2011    4
• 2012    26
• 2013    491
• 2014    63
• 2015    48

So, not too much until 2012 when I knew something was wrong starting in October; diagnosed and treated in 2013 ; and working on my recovery in 2014 and 2015.  Nice to see the numbers trending down.  Here's a graph showing the number of tests by month.

Here's a word cloud I did of the providers who ordered the tests. You see #1 is Yvonne Efebera, MD  with 99 tests, #2 is Tammy Lamb  at 89 and #3 is Rebecca Scott (the nurse practitioner on the bone marrow transplant unit)  with 80.  I've had tests ordered by 35 different providers.  The father of  a girl who played field hockey with Claire, Rob Baiocchi, MD is a hematologist at Ohio State.  He mentioned at one of the games that I looked familiar and asked if he'd taken care of me.  I told him that the time I was in the hospital was such a morphine induced blur and perhaps he did, but I didn't remember it. Sure enough, when I looked at the tests from when I was an inpatient, I saw that he ordered my red blood cell transfusion.  Quite a small world. 

I also did a word cloud of the tests that were ordered.  You see the focus on the blood tests to see how my blood health was doing in the onslaught of chemo.  CBC to check the components, hepatic function panel to check liver function (the amyloids went after my liver and chemo is metabolized by the liver--double whammy), interesting that the immunoglobulin free light chain test to measure the substances that create the amyloids is relatively small.  They say that it's important to protect organ function for amyloidosis patients so it's nice to see the word cloud confirm my physician's focus on that.  

I had a great appointment with Dr. Efebera this week.  I posted this on Facebook--

4 month check up and all the digits look good. Kappa light chains aka bad stuff is below normal at 2.79. It was 79 when diagnosed. Key liver test that was 500 right after my transplant is now 57.

I sent this email to Dr. Efebera tonight at 5:06--

Alan was asking me about our appointment and asked what we discussed about my liver.  I said we barely even talked about and breezed over the lab results.  I said, "She didn't even palpate it.  My liver is like the best gift I bring Yvonne and she didn't even take the time to enjoy it."  Glad you enjoyed the kidney results, though.  :)

Merry Christmas, from all my organs.

 She replied at 5:08--

I know!!!!.   Your abdomen is so flat (flatter than mine) that your liver said “ no need to palpate me today, you can already see me” 

And then added at 5:09--

and I love those kidneys of yours.

 I love my kidneys, too.  It's been a good week and I'm so grateful for how well I'm doing, what a great care team I have and how bright the future looks for Amyloidosis patients.  2015 has been a pretty good year!

36 Hours in DC

What an incredible trip to DC for a meeting that brought together most of the top Amyloidosis researchers from across the world, patient advocates, caregivers, FDA representatives, and, most importantly, representatives from the Amyloidosis Research Consortium.  The ARC is an organization “committed to building collaborative relationships between patients, academia, industry, foundations, federal funders, and regulators to facilitate and speed new therapies to market.”  Highlights of the meeting included—

• Meeting or seeing again “my people” especially my Amyloidosis sister Kim Tank, who I met in person for the first time
• Confessing my research fan crush on Dr. Ray Comenzo with him…and several of my Amyloiodosis friends (hilarity ensued, FYI)
• Hearing the top researchers in the world share with the FDA why the current drug development methodology in Amyloidosis is killing patients (my words, there)
• Learning of the strength and courage of others who are struggling with this disease and hearing their heartwarming…and gut wrenching…stories.
• Having people share with me how my blog has given them motivation and hope

Basically, the overall theme was HOPE!

Right now, there are no FDA approved therapies for AL Amyloidosis.  Every treatment is an “off-label” use of a drug designed for Multiple Myeloma.  Problem is, we don’t have MM.  As Dr. Morie Gertz noted at the session, “The massive gains in myeloma survival are not translating sufficiently to AL patients.  Unique interventions are needed for amyloid population.  The amyloid population is uniquely fragile.  Typical myeloma regimens have much more profound impact on AL.”  I’m assuming that impact is negative. 

Presenters, including Dr. Giampaolo Merlini from Italy and Dr. Vaishali Sanchorawala from Boston talked about the physical, mental and emotional costs of the disease.  30% of patients diagnosed with AL are dead at 6 months and for those with cardiac involvement, median survival is 18 months.  Not having approved drugs and the slow pace of drug development inherent in diseases with small populations is causing deaths that could be prevented.  The pharma companies have potential drugs but using overall survival as the success measure in clinical trials for small populations makes the approval process too long and not economically sound.  For AL Amyloidosis, it makes sense to use biomarkers that are proven to be predictors of overall survival as success measures in trials.  If the FDA would allow that, it would reduce the time to complete a trial from 6 years to 3….cut in half!

Dr. Sanchorawala shared results showing the impact the disease has on quality of life, another measure the FDA can use in determining whether a drug is shown to be effective.  Her study showed that Amyloidosis patients have a similar reduction in quality of life reported by people with Rheumatoid Arthritis.  And for some groups of patients, it’s at a similar level as chronic lung disease.  The impact to quality of life by those two diseases is pretty well understood.  For many with Amyloidosis, it is hard to measure with a clinical test the impact of the disease.  How do you quantitatively measure the impact that infiltration into the nerves of the mouth and salivary gland has?  I know a woman who’s dealt with this for 13 years.  It’s painful for her to talk, or to smile at her grandchildren, so she feels isolated.   If she were willing, why not let her try a drug that might help improve her quality of life?  But since that’s not an outcome that gets measured, she’s ineligible to participate in any trials, regardless of how willing she is because her outcome doesn't help the pharma company prove the efficacy of the drug to the FDA.

I’m HOPING that the ARC will be able to have the FDA accept biomarkers and quality of life measures as study endpoints for Amyloidosis drugs very soon….like starting next year.  It’s interesting that I was asking on Twitter about this quality of life question over the summer, thinking about the woman with the mouth involvement.  So happy to see it might happen.

It was so wonderful meeting so many of the physicians whose work I’ve read over the past two years.  First and foremost was being able to chat with Dr. Ray Comenzo, who I met at the Amyloidosis Gala in Nashville in October.  I cornered him there for about 20 minutes and told him how much I appreciated his work and how much hope he’s given me.  He was very gracious as I gushed on and talked his ear off. I read this article (“How I treat Amyloidosis”) when I was first diagnosed and the first case was so close to my disease course.  Reading about her recovery gave me so much hope.  When Dr. Comenzo came into the breakfast room, I told my friends at the table he’s my  researcher crush and that while I’ve only met him once, I know him through his writing and I feel a deep connection to him. I said his writing speaks to me more intimately than the most graphic romance novel and, of course, lots of laughter ensued. Right after that, a woman went up to him and they hugged.  I said, quietly so only my table could hear, “Don’t you go hitting on my man.  You ladies see what I’m up against with him.”

Later in the day, I shared this discussion with Dr. Comenzo and he got quite the laugh.  I thanked him for his research. We talked about the need for more treatments for Amyloidosis and I shared with him my perspective on maintaining a positive mental state.  I said that I pictured a sine wave going up and down across a horizontal axis.  Right now, I’m above the line and wasn’t going to waste a perfectly good remission worrying about relapse.  As long as new treatments are being developed, I can count on one of them being available if I relapse to put me back above the line.  My hope is to keep the wave going as long as possible.  He said, “You may have a crush on me but you inspire me.”  Swoon!

Dr. Sanchorwala came to me during one of the breaks after I’d shared that I was treated at Ohio State.  She asked me if I was treated by Dr. Efebera and when I told her I had, she shared with me how much she enjoyed Dr. E when she trained in Boston. I told Dr Sanchorwala how much I love Dr. E and how my friends and family believe she’s the perfect personality for me.  She mentioned that she recognized me from Twitter from an online Amyloidosis Journal Club that another physician has organized.  It was really cool to talk with her.

Meeting so many patients I’ve interacted with online was a blast.  First and foremost, I got to FINALLY meet my sister in this Amyloidosis sorority, Kim Tank.  Kim and I met through a Facebook group as I was recovering from my stem cell transplant and she was preparing for hers.  She’s a badass runner who completed a 100K run while finishing up her chemo and qualified for the Boston Marathon 9 months after her transplant.  She’s got great faith and great humor and is my sister from another mister.  I’ve felt close to her for over a year, even though she lives in California, and it was great to meet her.  We shared a room and had our Kappa Lambda Delta Amyloidosis Sorority slumber party and then did a whirlwind drive through DC on our way to the airport after the meeting was over.  Lots of love and fun squished into 29 hours.   

I got to reunite with Joanne Campbell who I met when I was at Mayo and visited while she was having her stem cells harvested.  I finally met Carole Harber and her husband David.  He’s a cyclist who had his bike set up on a trainer in their hotel room during his stem cell transplant about a year before mine.  Last year, he was the number one ranked road racer in his age group in the state of Oklahoma.  I saw the actor Michael York again, first met him at the gala in Nashville.  He, his wife and I had a lovely chat.  Sharing a room with more than 100 folks who are “my people” was a blast. The love, energy and support was just phenomenal.  Hearing stories from folks who have had such a tougher road with this disease than I have inspired me and filled me with gratitude. 

I also finally met in person my fellow Amyloidosis Kat that I met on Twitter.  Kat Timpf is a reporter for the National Review and a Fox News Correspondent. Her mom died from cardiac Amyloidosis last year only three weeks after being diagnosed.  We’ve shared some messages on Twitter and tend to re-tweet one another’s amyloidosis tweets.  She got up and shared her mom’s story at the meeting. You can hear an interview she gave about it here.  https://soundcloud.com/ben-kissel/katherine-timpf  It was heart-wrenching to hear her talk about how the family celebrated when the doctors determined that her mom didn’t have cancer.  They didn’t know it at the time, but she had something worse.  Let that sink in.

Josh Lacy shared his story of Amyloidosis.  He was diagnosed with AL Amyloidosis with cardiac involvement in 2012 when he was in his mid-30s.  He was married with a 4 year old daughter and 1 year old son.  You can imagine how devastating this diagnosis would be at that time.  During his talk, he made an impassioned plea so he would be alive to see all the milestones ahead of his children—high school, college, marriage and adult life.  Boy do I know that feeling.  He’s a former college baseball player and talked about how hard it is to know his son will never know his dad as the strong athlete Josh once was.  That really choked me up.   He talked about being too weak to go into school for his daughter’s first day at kindergarten but he was able to go to school in his wheelchair. He also gave me a good laugh when he described how he didn’t have the strength to lift his son when he was sick so if his son didn’t want to do something, he’d lie on the floor and look at Josh like he was saying, “What are you going to do now?”

Later in the day, Josh came up to me and introduced himself.  I told him my name and he said he knew who I was through my blog.  That his wife had read it and used it to motivate him during some of his tough times basically saying, “Look at what that lady is doing.  You can get back, too.”  (My words, not theirs.)  That was my whole reason for starting the blog…to give hope to people that it is possible to have a full and satisfying life with Amyloidosis.  I felt so honored to have served as a tiny bit of motivation for Josh and his wife Adrienne.  I had a great chat with them.  Such a great couple that joined this crappy club.  I am so inspired by their faith and strength.

I thought about my girls as Kat was telling her story.  If I had cardiac involvement, I’m firmly convinced that I wouldn’t be alive today after my delay in diagnosis.  I would have been like Kat’s mom or my friend Cara or any of those other cardiac patients who have a median survival of 18 months after diagnosis.  But, because of some variable portion of the germ line of some gene, my free light chains didn’t effect my heart.  And so I’m here today trying to use the time God has given me as effectively as possible.  

My doctor introduced me to Cara who was diagnosed about 6 months after me.  I told her I'd be her big sister in this crappy sorority we both pledged in to.  She had cardiac involvement and, even though her hematology was starting to respond from chemo, her heart was too damaged and she died about 6 months after being diagnosed.  She left behind a loving husband, three children between the ages of 9 and 14, and scores of loving family members and friends.  I regularly think about the comment one of Cara’s sisters in law said to me at her viewing, “We wanted your story to be her story.”  I vowed then to try to change the story for a Cara in the future. So that someone with cardiac Amyloidosis could have my story.  Yesterday was a HUGE step in that direction.

Just when you thought it was safe....

So, as you can tell from my various activities--riding strong in Pelotonia, hiking  and white water rafting in the Cascades, racing in cyclocross--my health has been pretty good lately.  But....there's been this issue that has caused me some concern and been a source of worry for my husband, who's an ICU nurse.  When I exercise, my heart rate has been about 20 beats per minute higher on average and at max compared to when I got sick.  On long, hard bike rides, I've had extended periods of time during which my heart rate was above my max HR.  And, I've had some near fainting spells during particularly difficult times.

I did the responsible thing (shocking, yes?) and consulted with my hematologist.  Yes, it seems odd to consult with a hematologist on a cardiac issue but I assume all issues are due to the effects of the amyloidosis or treatment so I start with Dr. Efebera.  She referred me to a cardiologist at Ohio State Ragavendra Baliga, MD.  I met with him September 17 and, like every other physician I've encountered at Ohio State, I was impressed with his knowledge, friendliness and balanced perspective.  I loved his icebreaker question.  He asked me, "What are you famous for?"  I answered, "Kicking Amyloidosis' butt and being a data geek."  (Confirmation came that same week when Pelotonia tweeted out a link to my story in The James magazine-- https://twitter.com/Pelotonia/status/647018183652737024 and Teradata Partners posted an interview with me talking about how we select sessions for the conference-- http://www.teradata-partners.com/blog/post/global-compelling-stories-value ) After reviewing my history, he ordered some tests--a cardiac MRI and a VO2 stress test.

I've had a cardiac MRI before.  You get an IV to deliver the contrast, you get loaded into the MRI machine and you spend about an hour following instructions of when to breathe and when not to, and listening to noises that sound to me what an apoclyptic robot war would sound like.  The VO2 stress test is the usual stress test--walking then running on a treadmill with ever increasing pace and incline--WITH a mask over your face and your nose pinched shut so they can measure how your body uses oxygen.

First, the good news....the VO2 test shows that I'm in pretty good shape.  I performed at 138% of what is expected for someone of my age and gender.  Dr. Baliga says he never sees anyone over 100%...well, he's a cardiologist treating advanced and complex cases.  Logic says his patient population won't be filled with folks who have high cardiovascular function.  He told me my VO2 max was 36...and then he told me that Michael Phelps' was 71.  My rose-colored glasses helped me see that halfway to Michael Phelps for a 53-year-old woman wasn't too bad.

The bad news is that the MRI showed some thickening of the pericardium, that's the fibrous sac that contains the heart.  It also showed some enlargement of the atria, the top chambers of the heart.  These are not the chambers that pump the blood out, they're the ones that receive blood from the body and the lungs.  Their walls are thinner than the lower chambers, the ventricles, that do the pumping.  

The MRI report said there was evidence of "constrictive physiology" which means the thickened pericardium, the sac that holds the heart, could be pressing in on the heart and constricting it's function.  Like a balloon, when you squeeze on one part, it causes another part to enlarge.  That may be why my atria are enlarged.

So, Dr. Baliga wants me to undergo a cardiac catheterization to measure the pressure in my chambers....to know whether my heart is constricted.  Initially, I wasn't a big fan of the idea.  When I asked my standard question regarding any major test, "How will the results change my treatment or management of my disease?"  The answer, as so many things when managing a complex disease, wasn't as straightforward as I would have liked.  Bottom line is, it could rule out this constrictive physiology and show the heart isn't constricted and this isn't something we need to monitor and manage over time.  Or it could show that this is a problem that we need to monitor and this would give us a very thorough set of baseline data so we could pick up changes and know when to start treating it....through surgery by cutting a window in the pericardium.  Eeek! 

Dr. Baliga called Amyloidosis an outlier disease because there's not a lot of proven treatment approaches once you get beyond the basics of the disease.  And he said I'm an outlier within the Amyloidosis patient population so there's no literature on how to deal with my situation...everything is anecdotal.  The good thing is, he trained at Boston which is one of the centers of excellence in Amyloidosis and has a colleague there who he will consult on my case after he gets the results from the catheterization.  

As I was texting with my nurse practitioner Tammy about whether to have the cath, she strongly recommended it saying, "This is your heart, we don't want it broken."  I said, "A ruptured atrium sounds kinda serious" and she said, in her usual understated manner, "Ya think?"

So, on October 28, I'll have a cardiac catheterization done by a cardiologist specifically chosen by Dr. Baliga because, as his nurse comfortingly (?) noted, he has a lot of experience with patients with heart failure.  And then we'll see if I have an additional problem to monitor or not.  I was thinking about how well things had been going over the last year and it made me think of the tag line from Jaws 2....

But, I'm going to "stay in the water."  Between now and then I have two cyclocross races, a trip to Nashville for an Amyloidosis Gala and patient meeting, a trip to Anaheim for the Teradata Partners conference including a doing a presentation called "Curve Busters: Looking for a 'Dare to Be Great' Situation" (with my friend Dean Furness who became a paraplegic from a farm accident a year before I was diagnosed), a Frank Turner concert in LA the night the conference ends and dinner with my friends Reid and Bethy, a party with my Pelotonia team, leading my church's pledge drive as chair of the Stewardship Committee, organizing weekend food kits my church is providing for 75 students on free lunch at a nearby elementary, starting a new mentoring relationship with a 6th grader at Champion Middle School, watching some Gator football, doing some exercising and yoga, keeping the day job, wife-ing a little for Al and Mom-ing a little for Claire.  

No time to worry.  God has given me the grace to deal with what is, and not worry about what might be.  

Keep on keepin' on my friends!!  

Juxtaposition

Juxtaposition—the fact of two things being seen or placed close together with contrasting effect.

I’ve spent the last week on vacation in Mt. Shasta, California with my husband and our youngest daughter.  We rented a little cottage and spent our time hiking and white water rafting through some beautiful scenery.  As you'll read below, I spent a lot of time thinking about some things...some of them a little heavy.  But don't worry, it didn't spoil my vacation.  I'm pretty sure Alan and Claire had no idea of what I was wrestling with mentally and emotionally.  I've gotten pretty good at the skill I call "active ignorance" (the act of ignoring something that I don't want to think about).  You can see the fun from the vacation here--Kat's Vacation Pics 

I’ve had a lot of time to think and there have been a few contrasts that I’ve been turning over in my mind:

•       Choosing to live out of a backpack or having to live out of a backpack

•       Consuming resources or preserving them

•       Relying on science or trusting in God.

Choosing to live out or a backpack or having to live out of a backpack

We were staying very close to the Pacific Crest Trail so we encountered several people who were hiking the trail.  It appeared that some had made a choice to spend time on the trail.  We met a woman at the market in Castella who was transferring her possessions to a new lightweight backpack she had just taken out of the shipping box.  She said she was spending a few months hiking the Pacific Crest Trail.  Al, Claire and I talked about the woman and others we’ve known who have taken time from their “normal life” to go on extended hikes. 

There were others we encountered who appeared to have fewer options when it came to their backpack—not just the option of getting a new one but having the option to leave it behind.  I told Claire after one particularly rough looking guy passed us with his backpack, “There’s a big difference in the life you’re leading whether you choose to live out of a backpack or you have to live out of a backpack.” 

Consuming resources or preserving them

The first full day we were in Mt. Shasta, we drove up to Ashland, Oregon to go white water rafting on the Upper Klamath River.  It had 40+ named rapids with many being class III-IV+.  During the trip, the guide offered to let someone “ride the bull” through some rapids…that’s sit with your legs over the bow of the raft holding on to a rope. 

Now, in my “before” I would have been the first to do that.  If there were an option for adventure and adrenalin, I’d go for it.  But now, in the “after”, I have this thought of how hard I’ve worked to regain my strength and how I want to protect my health and strength—the choice to preserve and not fully consume.  It's just like any other finite resource--money, time, fuel....life.  I told Al and Claire that so many people have invested in my recovery—my family, medical team, church family and friends—that I don’t want to do seemingly silly things that might put that health and strength at risk. 

If I were a corporation, I’ve gone from a sole proprietorship to a public company.  I almost feel a need to hold a proxy vote before I make any decisions that could put my health and strength at risk.  Plus, there’s always this little voice that says, “How will you explain this to Yvonne?” (my oncologist) if I get seriously hurt.  It’s a tough question for those of us who’ve worked hard to recover from treatment and enjoy our remission but who face a likely relapse….”Do you consume or preserve the precious amount of life that’s left?”

Relying on science or trusting in God

I was perusing Twitter while we were waiting for our flight out of Columbus at the start of our vacation.  One of the Mayo oncologists I follow, Dr, Vincent Rajkumar, tweeted out a link to a study recently published by Mayo.  Reading those studies can be an emotional crapshoot leading to vastly different places—filled with hope or fear.  Unfortunately, this one led to the latter.

The study was the first long term retrospective on the role of chromosomal abnormalities in overall survival of AL Amyloidosis patients.  I’ll save all the discussion of factors, sample sizes and p values and cut to the chase.  Bottom line, it found that folks with my chromosomal abnormality—a translocation of the 11th and 14th chromosomes—and my level of plasma cells in their bone marrow (<= 10% I was 10% and 7% depending on whether you consider the core or aspirate sample) had a median overall survival of 53 months compared to “not reached”...meaning the folks who met this criteria (me) died after 53 months on average and those who didn't have these features were still alive.  I've always taken comfort in the fact that my heart has never shown evidence of amyloid infiltration and because of that, have been able to dismiss a lot of the bad news found in the studies.  But this statement in this study totally undermined that confidence.  "abnormal cIg-FISH had a negative prognostic impact independent of NT-proBNP and other adverse features on multivariate analysis. Even high-dose chemotherapy with stem cell support did not abrogate the risk imparted by abnormal FISH."  So, even if you don't have heart involvelment (as measured by NT-proBNP) and you have a stem cell transplant, this criteria still impacts overall survival.  You can read all the gory details here-- Abnormal FISH in patients with immunoglobulin light chain amyloidosis is a risk factor for cardiac involvement and for death

So...53 months.  I’m 29 months in when the median overall survival is 53 months.  I retweeted the study with an admittedly melodramatic comment and Dr. Rajkumar was gracious enough to reply in an attempt to talk me off the ledge.

So, Dr. Rajkumar says my expected survival is longer….6 months, 6 years?  Either of those numbers is less than I’d like.  I’ve always said a 30-year remission is as good as a cure for me. I know a woman whose disease course has been very similar to mine so far and she's 20 years out.  But 53 months is decidedly less than the 360, or even 240,  I’m hoping for.   What now?

It seems with all of these juxtapositions, it’s not a question of “or”, it’s a question of “and”.   I can choose to fully consume my life while being smart about preserving it.  I’m able to live my life more fully than many my age who have never been sick and I can certainly consume more than many Amyloidosis patients I know.  And, whether I'm choosing or having to live out of a backpack, well at least I'm alive.

I can rely on the science to understand the challenges and risks ahead but I will trust in God to guide me through them.  He’s gotten me through everything so far.  As my friend John says, we're curve-busters. He's gone through 2 stem cell transplants, a few rounds of chemo and radiation in his fight with Multiple Myeloma so he speaks from experience. And, if my time is less than I’d like and I can’t do the things I’m hoping to do—guide my daughters as they become adults and build their families, dote on some grandkids, spend some time in retirement with Alan—then I have to trust that God will provide for the love and nurturing that I can’t.

So I trust in God AND I also ride my bike to raise money for cancer research…hoping it will help me, knowing it will help someone.

For in hope we were saved. Now hope that is seen is not hope. For who hopes for what is seen?  But if we hope for what we do not see, we wait for it with patience.

--Romans 8:24-25