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Showing posts with label Michael Caligiuri. Show all posts
Showing posts with label Michael Caligiuri. Show all posts

Wednesday, August 13, 2014

Pelotonia--180 miles

As many of you know, I rode in Pelotonia, a cancer fundraising bike ride, on August 9-10.  I had originally signed up to ride 100 miles but after some prodding (nagging) from my husband I decided to do the longest ride, 180 miles over 2 days.  It was an amazing experience...more than 7,000 cyclists, hundreds of volunteers including paramedics, physical therapists, police officers and thousands of supporters...all focused on our One Goal ==> End Cancer.

Of course there were people lining the streets in downtown Columbus at the start but there were people cheering us on and encouraging us throughout the route.  There were many, many people throughout the ride holding signs, shouting encouragement and always saying, "Thank you for riding." ...even in some pretty remote locations.  The volunteers always thanked us and of course we thanked them back since they had the food :) and the police officers manning the intersections always thanked us, too.

One small town east of here, Granville, had hundreds (thousands?) of people turn out, lining some sections of the course 2-3 people deep.  It came when we were 60 miles in, starting to feel tired yet knowing the worst was still ahead of us.  What an adrenaline boost that was!  I started tearing up as I rode into the town seeing the support and was a boo-hooing mess as I passed through.

It was a physical manifestation of an image I held on to during some really dark nights in the hospital....all my family and friends surrounding me and cheering me on....that's what I saw and felt as I rode through Granville and many other times during the ride.  Here are a few good pictures of the scene in Granville.



Most of the day Saturday I rode with my husband Al and Tammy, my oncologist's nurse practitioner.  Although Tammy was riding really strong and I was having some hip and foot issues so she dropped us, well dropped me, like a used Kleenex.  But we would meet up at the rest stops and take off together.

Crossing the 100-mile finish line alongside Alan and Tammy is a feeling I will never forget.  Those two are the people most responsible for getting me to the mental, emotional and physical condition to successfully complete that ride.  My training and toughness may have been what got me to the finish line, those two got me to the starting line.


After we got off our bikes, we all exchanged congratulatory hugs and I just broke down sobbing on Tammy's shoulder.  I spent a lot of time on the road thinking about these last 18 months...not so much the bad stuff, just a little bit of that.  But I thought so much about the love and support that had gotten me to that finish line and I was just overwhelmed by it all.  

Alan and Tammy weren't riding the second day so we ate dinner, they left, I got a massage and some first aid for my foot, and went to sleep in my dorm room.  My roommate was a lovely young lady who is majoring Marketing and Finance at OSU who will be a senior this year.  

On Sunday, we lined up to start at 7am on a cool foggy morning.



As you can vaguely see in the above photo, we started riding uphill pretty quickly and we continued going uphill for another 20 or so miles.  Ugh!

Since Tammy and Al weren't riding Sunday, I rode with some folks I met on a training ride that I wrote about here--Pelotonia.  I was having issues with my foot and it really slowed me down on any sort of hill, of which there were many.  So I would take off with the group but would get dropped pretty quickly.  That gave me a lot of time to ride by myself.  It was an interesting metaphor for how my fight went, and how it might go in the future.  Sometimes, your loved ones are fighting with you, side by side but there are also times when you're fighting alone.

The other interesting contrast on the ride is that my primary riding partner on Sunday was Chris Scarcello, Director of Research Operations at The James, the cancer hospital where I had my treatment.  She is the sister of Michael Caligiuri, MD, the CEO of The James.  Dr. Caligiuri rode with us for extended periods of time.  It was nice to see him thank every rider he passed.  Chris' two daughters, Liz and Gina, and friend Julie also rode in the group.  So, on Saturday, I rode with the people personally responsible for my recovery and on Sunday, I rode with some of the people corporately responsible for my recovery.

I crossed the finish line with their group at about 2PM.  Waiting at the finish line were Al, Claire, my niece Samantha, brother in law David, nephew Max, Tammy, and a fellow with whom I work, Greg, and his family.  It was such a feeling of love and support and I was grateful that they were there.



Here's a link to all my pictures from Pelotonia-- Kathy's Pelotonia Album

On Monday, as I was still basking in the post-Pelotonia glow, I had to grab a late lunch in the 30-minute window between meetings after our cafeteria had closed. As I ate my lunch at a sidewalk table near my building, a 20-ish year old man approached me with a story about needing money to get out of a parking garage because he lost his ticket. I sensed it was a scam but told him I'd give him money if he told me his story and he listened to mine.
He told me he's a recovering heroin addict
he wants to attend OSU
he had a dope sick, jail house encounter with God that powers his recovery
that he's scared he will relapse
that it hurts to get shot.
I showed him a picture of me last year
told him about my transplant
shared the grim prognosis and relapse statistics for my disease even with the transplant
told him there was nothing I could do to control my relapse, that it was a roll of the dice with the odds set by the biology of my plasma cells.
I told him that over the weekend more than 7,000 people rode between 25 and 180 miles and thousands of others volunteered to try to change those odds for me and for millions like me.
I asked him that, when he's faced with a choice of whether or not to use again, to think about the gift of life God had given him and to make a choice that honored that gift...because there's millions who don't have a choice as to whether we relapse but would do anything to have one.
I handed him $35, gave him my phone number and told him to call me if he needed anything, and that I'd pray for him.
It may not have helped him, but as those encounters usually do, it really helped me.

I will ride in every Pelotonia for as long as I'm able.  Yes, it feels great to raise money for cancer research and to complete a challenging physical activity.  But what Pelotonia is for me, as I ride through the streets filled with supporters cheering me on, is a physical manifestation of the love and support I felt during my illness, treatment and recovery that carries over once I get off of the bike.

I'd ride a lot longer than 180 miles to be able to feel that every year.

Sunday, June 08, 2014

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

Friday, December 27, 2013

"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.