Pelotonia

As you can see by the banner on the right side of this blog, I'm riding in a fund-raising ride for cancer research in August called Pelotonia.  It's a big event here in Columbus.  It has raised almost $3 million so far this year and has raised over $61 million in its five years.  I've committed to ride 100 miles and raise $1,800 but because all of you are so generous, I've already raised $3,500.

The finish line for the ride will symbolize that I've left behind the impact of the disease and treatment, and that I've regained the physical performance status I had before I got sick.  I'll be riding with my husband Alan and my oncologist's nurse practitioner Tammy Lamb.  Those two have been key in getting me back to normal and I'm so happy I'll be able to cross that finish line with them.

The cool thing about Pelotonia is that every dollar donated to support a rider goes directly to cancer research at The James Cancer Hospital and Solove Research Center.  Local businesses and corporations fund all the administrative costs.  And the research they do there is really making progress.  Here's an article about a new pill developed at Ohio State that helps chronic lymphoctytic leukemia (http://www.nbcnews.com/health/cancer/new-pill-helps-leukemia-patients-live-longer-n118566)  Some of the foundational work for this promising new Multiple Myeloma treatment, Elotuzumab, (http://finance.yahoo.com/news/bristol-myers-squibb-abbvie-receive-120000568.html), was funded by Pelotonia and completed in the lab of one of the physician researchers who rides on the Ride MMORE team, Don Benson, MD, PhD  These are just two advancements coming out of Ohio State that I'm aware of in the last month.

I was fortunate enough to get Shelley Meyer, wife of Urban Meyer the football coach for Ohio State, to hold a fund-raising spin class for my peloton--my riding team--Ride MMORE on May 18.  That raised $1,000.  Shelley and I both tweeted about it a lot and one of the local sportscasters came out and did a story on it. Here's a link to the story http://vimeo.com/95812325 recorded off of my TV (apologies for the quality.)  Shelley was so supportive and gracious.

Yesterday, I went on a training ride with about 200 other Pelotonia participants.  Here's a picture as we were lining up to leave.

There were options for 19, 39 or 57 miles.  I wanted to do the 57 mile route as a prep for the 100 miles I'm riding in August.  I made arrangements to meet up with a woman, Tanya Knauss, who joins us for our Ride MMORE training rides on Tuesday evening.  Her husband of 8 years was 33 years old when he died from brain cancer in 2013.  Her spunk, spirit and sense of humor make her a blast to hang out with.  Tanya's sister and a few friends were with her at the start of the ride.  We took off a little bit after 8 and about 15 minutes into the ride, I was feeling really strong and just wanted to ride for speed to make myself stronger.  I've ridden close to 350 miles so far this year (not counting a few hours on the trainer in the basement in the winter) but I'm still nervous about riding the 100 miles on August 9.  I want to use the training rides I have to push myself so I'll be ready for that and can finish strong.  Between vacations and work travel, I only have 4 more weekends available for training.

So, I took off and rode what I'd call comfortably hard.  Turned out it was between 15-17mph and I was by myself for about 20 minutes (it seemed).  I came on a group of two men and one woman who looked about my age and were riding at about my pace so I thought I'd hang with them for a while.  It was nice to be in a group and the pace was good so I just tagged along.  We chit chatted a little bit while we rode along.

When we got to the first rest stop, we took off our helmets and sunglasses and started introducing ourselves.  Turns out I had crashed the group with the CEO of The James Cancer Center, Michael Caligiuri, MD.  Also riding with the group was Christine Scarcello, Director of Research Operations at The James.  I told them my story, incessantly praised the care I've received from Yvonne Efebera, MD and her team, and shared how thankful I am to have The James available locally to provide my care.

Now, those of you who know what a die-hard Gator I am and remember how poorly the Ohio State football and basketball fans treated me when I first moved up here will find my affection for Ohio State a bit surprising.  At some point in this fundraising adventure, I will be donning a cycling jersey with this Team Buckeye logo on it.  I now have lots of love and respect for Ohio State for creating such an incredible health system--The James Cancer Center, Dodd Hall Rehab Hospital, The Wexner Medical Center and all the physicians and care givers that I've encountered.  If you've been reading this blog for a while, you've seen my praise for these physicians--Dr. Efebera, Dr. Levin, Dr. Blum (the doctor who cared for me during most of my transplant), Dr. Parikh, Dr. Benson--and their teams...especially Tammy Lamb, Dr Efebara's nurse practitioner.  All incredibly smart and incredibly caring.

I rode most of the day with Christine and Giorgio whose last name, according to my internet stalking skills, is Bittoni.  We talked a lot about The James, cancer research, Pelotonia, our families and interests.  It was great to get to know some new folks who are committed to ending cancer by riding in Pelotonia.

If you haven't given to Pelotonia yet, consider a donation to my ride or to Alan's  You would be so impressed with the commitment of so many people to create a cancer free world.  I got to know three more of them on Saturday and rode with another couple hundred.  Watch this video and hear my riding partner from Saturday explain how the money is used and then please give a gift.

I'm raised $3,500 now.  $5,000 sounds like a nice, round financial finish to go with my 100 miles of riding.

How 'bout it?!?!?

Here's the link for those of you on mobile-- http://youtu.be/Y8t7y1umCNs

Relatively Easy

The last two weeks have been a continuous stream of good news and confirmation of how well I've made it through the treatment of and recovery from this disease.  My nephrologist telling me last week that I "breezed through the transplant," my gastroenterologist telling me that not only is my liver size reducing, its also softening which means its getting closer to normal.

The latest good news that I've shared on Facebook that I had my abdominal ultrasound on Wednesday for a post-transplant re-staging of my disease. It showed that in the 9 months since the transplant, my liver has reduced 5.4 cm in size from 24 cm to 18.6 cm. That meets the defined criteria for organ response. My kidneys were also effected by the Amyloidosis and I've achieved organ response there, also.

Hematologic response--check complete
Liver response--check greater than 2 cm reduction
Kidney response--check greater than 50% reduction in 24-hour urine protein

Here's the picture from an article in the journal of the American Society of Hematology entitled "What do I need to know about immunoglobulin light chain (AL) amyloidosis?" authored by three Mayo physicians including Dr. Gertz who I saw for my second opinion.

So, I've made it across the entire response continuum and for that I am so thankful--thankful to God for His guidance and faithfulness, thankful I pushed for a diagnosis, thankful to my medical team and thankful for the support of my family and friends.  I know of so many amyloidosis patients whose disease went undiagnosed and untreated/ineffectively treated for an extended period of time and suffered irreparable damage to a combination of their heart, kidneys, liver, nerves and/or skin.  They are facing limited strength and endurance due to heart damage, regular dialysis and edema due to kidney damage; ongoing abdominal bloating and digestive problems due to liver damage; painful neuropathy, loss of balance, dangerously low blood pressure due to nerve damage; and/or debilitating pain when doing something as simple as talking or smiling due to amyloids in their soft tissue.  I don't have any of that.  Yes, I have some clinical signs from the damage caused by the disease but they don't impact my ability to live the life I had before.  Yes, I have a ~96% chance of relapse but overall survival in complete response SCT patients is averaging 10 years now and getting longer every day.  I am healthy and disease free until Dr. Efebera presents me with test results and her assessment that I have relapsed.

I've been listening to a new to me artist named Jason Isbell that a friend (music identifier extraordinaire) recommended to me.  He knows I like progressive rock and alt country artists who write poetic lyrics wrapped in simple solid music--Ryan Adams, Josh Ritter, Delta Spirit, Old 97s, The Avett Brothers (still mad I missed their show in May due to my SCT recovery).  Andy Staples, a sportswriter I follow on Twitter and fellow UF Journalism school grad, called Isbell, "A storyteller who follows Strunk and White's rule 17.  That rule says, "Omit needless words." 

Isbell has a song called "Relatively Easy" which has become my favorite song recently.  I know one of the main reasons is because of all the good news I've received compared to others I know fighting Amyloidosis.  I almost feel a little guilty...like that person who survives a plane crash and wonders "Why me?"

Here's a link to the song-- http://youtu.be/NIQ1NHa0g6A

Here are the lyrics that really impact me--

You should know compared
To people on a global scale
Our kind has had it relatively easy
And here with you there's always
Something to look forward to
Our angry heart beats relatively easy 

I've always felt this way about life in America.  My work with Food For The Poor and my travels to work with the destitute poor in Haiti and Jamaica gave me a broader perspective of what prosperity really is.  I met a parent whose child died for want of $2 in antibiotics.  If I lived in any country other than a highly-developed first world country--US, Canada, Western Europe, Japan--I'd be looking at a much more grave prognosis.  Because of the care I've received and the care that will be available to me in the future, I have a lot to look forward to.  I think about all the support from Al and his work and dedication to get me back to normal.  So yes, here with Al, there are lots of things to look forward.  Our hearts that were angry when I was first diagnosed now beat relatively easy.

I lost a good friend
Christmas time when folks go off the deep end
His woman took the kids and he took klonopin
Enough to kill a man of twice his size 

Not for me to understand
Remember him when he was still a proud man
A vandals smile a baseball in his right hand
Nothing but the blue sky in his eye

 While I never even considered suicide, I can understand the despair over the future that could make a reasonably emotionally healthy person consider it.  You can become hopeless when who you are seems so far from the person you've always considered yourself to be and you don't see a clear path to become the person you believe you are.  That's what those two verses say to me.  I talked about that feeling in this post--Before and After Part 2  This was in July when I wasn't sure about the hematologic response and hadn't seen any organ response either.  I looked back at the person I was at Amy's wedding--not just the physical state, but also the emotional state--and didn't think I'd ever get back to a reasonable facsimile of that person.

Still compared to those
A stones throw away from you
Our lives have both been relatively easy
Take the year and make a break
There ain't that much at stake
The answers could be relatively easy

I think about the people I know who are fighting much harder battles with this disease than I am and face a much longer road to normal, if that's even possible.  I think about my friend Robyn who died in September after a four-year battle with Pancreatic Cancer.  I'm coming up on my one-year anniversary of my diagnosis.  I did take a year, there was a lot at stake, but, yes the answers were relatively easy.  As Dr. Parikh said I've breezed through this.

So, I'll sit here enjoy a post-workweek glass of red wine and bask in all the good news I've received and contemplate Relatively Easy.

Good Progress

I had appointments with my gastroenterologist and nephrologist on Wednesday.  I call it my day with the gists.  I really like both of these physicians and they're about as different as possible on the surface.  But what they do share is a deep knowledge of their medical science with equal portions of compassion, a bias for action and a willingness to educate me...which are very important to me.

Dr. Levin, my gastroenterologist, is about 70 and a focused scientist who seems to have a gruff exterior but has a heart of gold and a mind that can quickly organize data.  He reminds me of that grumpy uncle who is somewhat intimidating when you first encounter him but is quietly caring and figures out all the brain teasers.  When I was continuing to have issues with my fluid retention in the hospital and felt like the transplant physician, Dr. Levin and my nephrologist couldn't develop an approach, I asked Dr. Levin to step in and get things moving and he did.  He was also the one to diagnose me.  For that, I will be forever grateful.  During my first appointment with him, he asked if I was related to a physician named David Koontz.  I told him David is my brother in law and Dr. Levin mentioned that he trained David when David was a resident at Riverside Hospital about 25 years ago.  It shows me he's a man who cares enough about people to commit them to memory.

Dr. Parikh, my nephrologist, is probably in his early to mid 30s and is very eager and engaging.  I wrote about my first encounter with Dr. Parikh in this post.  He answers all of my questions and provides context and the reasons why lab values may be changing.  When I notice a change and express concern, he doesn't just tell me "that's normal, don't worry about it"  he tells me why its normal, what is driving the change and why I don't need to worry about it.  So often when questioning any technical expert, I'm reminded of the quote by Einstein that says "If you can't explain it simply enough, you don't understand it."  Dr. Parikh always explains things simply enough so I can understand them.   When we were talking about changing some medication levels over the summer and I wasn't ready to change them as much as he was, he listened to my concerns and said we would try my course of action first.  To me, that shows a great deal of confidence in his ability to manage my condition since he didn't insist on his course as the only course.

On Wednesday, Dr. Levin told me that he could feel that my liver size has reduced.  I felt that but his assessment validated that it wasn't just wishful thinking on my part.  He also said my liver is no longer rock hard.  Liver hardness < Rock  That's a nice equation.  I was reading the proceedings of the International Symposium on Amyloidosis and read this interesting information in the history section.

Thomas Bartholin, discoverer of the lymphatic system in humans, described in his Historiarum Anatomicarum Rariorum the autopsy of a female whose spleen was so hard that it could scarcely be cut with a knife.  He stated that incision of the spleen produced a sound like that of the cutting of spongy timbers. This autopsy report was included among the 3000 collected in Theophili Boneti’s Sepulchretum Sive Anatomia Practica which was published in 1679.

That type of organ hardness is what I've imagined my liver is like.  Nice to know Dr. Levin feels that its softening up.  Goodbye spongy timbers!  (When I read "spongy timbers" I thought that would be a good name for a pirate ship captained by Spongebob Squarepants.)

Dr. Parikh said that my kidney function is normal except for an excessive amount of protein in my urine.  The amyloids have pried open the filters in my kidneys.  Substances that are too large to pass from the blood into the urine through the normal size filter will go through in an amyloid damaged kidney.  Protein that should stay in my blood leaks into my urine through the filters that have been pried open.  He said that's improved thus far and he expects it to continue improving.

In Amyloidosis, they measure treatment response in hematologic response (are you no longer producing the substances that create the amyloids) and organ response (are the organs damaged by the amyloids recovering.)  My doctor said that organ response can take up to three years to complete and in the studies I read, that seems to be the standard period of time they look for changes.

I had a complete hematologic response and as long as my immunoglobulin free light chains are normal, that response is continuing.  There are defined standards to determine organ response.

For the liver, that criteria is ≥50% decrease in an initially elevated alkaline phosphatase level, or decrease in liver size by at least 2 cm.  My alk phos level has reduced by 33% in 9 months and I still have 27 months within which improvement could occur.  I go next week for an ultrasound to measure my liver.  Last time they measured it, it was 24cm.  22cm next week shows organ response in the liver.  Now, bear in mind that normal for someone my height is about 8cm. It reminds me of that scene in the Grinch where his heart grew 3 sizes that day...except for me its my liver and it wasn't undersized to begin with, as far as I know.  But I sure got the 3 sizes thing.

For the kidneys, response criteria is 50% reduction in 24-hour urine protein excretion (at least 0.5 g/day) without worsening of creatinine or creatinine clearance by 25% over baseline.  At my appointment in December, my 24-hour protein had reduced by 48%.  So close but I'm going to round up.  I'm sure I'll be officially in the response criteria when they measure it again, probably in April.

So, more good news and good progress.  The bad thing about doing so well is that I'm now on 6 month follow-up with Dr. Levin and Dr. Parikh.  I'm really going to miss seeing them but since it means that I'm getting better, then sorry guys, we're going to have to get comfortable with a long distance relationship (time-wise, at least.)  It sure beats the alternative of being in a health state where they are managing an active disease process.

So, docs, see you in July.  Hope you don't miss me too much!