The Ride as Sacrament

On Saturday, I will start a 2-day, 180-mile ride to raise money for cancer research at The James, the cancer center where I've received all my treatment and where my friend, John Rucker, is currently receiving his second stem cell transplant for Multiple Myeloma.

This graphic captures one of the main reasons I'm riding (beyond the fundraising)....to prove to myself, my loved ones, the world and this disease that I am walking, or rather, riding away from the negative effects of the disease and treatment.  It will be a demonstration that I can leave behind the negative physical effects but will also be a time for me to leave behind the negative emotional and mental effects, as well.

In my church, a sacrament (baptism, wedding, funeral), is defined as "an outward and visible sign of an inward and spiritual grace."  Those 180-miles will be that outward sign of my re-birth, the final shedding of the chrysalis of these last 18 months...10 miles for every month.

Seems fitting.

Final results of Gist Week

Hematologist results are all good!! The one key number--kappa free light chains aka the dirty bastard--is still as low as it's ever been. Normal is 3.3-19.4 and my lab results show less than 3.3...still at that level 3 months after stopping chemo. It was 79 when I was diagnosed. WooHooo! Thanks for the prayers and encouragement one and all, and thank you God for all the blessings you've given me throughout this journey. Now I can not think about this for a few months.

So begins KATE (Kat After Transplant Era), Cycle 6. It's 6 because that's how many oncology appointments I've had. With this, you kinda live in little chunks from oncology appointment to oncology appointment. That phrase "new lease on life" is real. It feels like my contract has been extended for another 3 months. Here's the closing song for Gist Week. It's about trying not to think about it for the next 3 months. Roll credits. 

http://youtu.be/LHJhyrrUTgc

Results of Gist Week--Episode 1

Part 1) "Live and Let Liver" Liver gist says things are great and I'm "the example of recovery from this disease." We joked around about me being able to die from something else and he said that would be great unless I get killed by a pick-up truck while I'm out cycling in the near future. If that happened, he said he'd stand on my grave shaking his fist saying, "You wasted all of this!" Sounds pretty morbid but it was really funny at the time.
 
Part 2) "Kidney Time" Kidney gist agrees about how well I'm doing and said I could cut my last medication dose in half. If I don't have any issues with fluid from that after a few weeks, I can discontinue it. The recovery of my protein loss through my kidneys has slowed down but is still improving and may continue improving for another two years. Last test, in March I was improving by more than 6 grams per day and now I'm down to a little over 4 per day. But, as my phlebotomy buddy and I say, "Slo motion better than no motion." AAAAND...I see the kidney gist one more time in 6 months and if things are still doing well, I won't have to have regular visits with him so I'm not only reducing the number of medications, I'll be reducing the number of physicians. Love ya, Dr. Parikh but it's time for me to move on. Really, it's me, not you.
 
So, great news across the board today but tomorrow is the big one! C'mon plasma cells, don't let me down!

The Gist of What I'm Sayin'--Part 1

Tonight, I'm talking about the gists...both kinds in my vernacular.  The first is how I refer to my medical specialists--gastroenteroloGIST, nephroloGIST and oncoloGIST.   That's the subject for part 1.  In part 2, I'll get to the gist that refers to "the substance or essence; the main point."

This week is Gist Week in my medical schedule because I have appointments with all my main peeps--liver gist, kidney gist and cancer gist. Now, you may think Gist Week is cool, maybe even like Shark Week on Discovery Channel.  The only similarity they share is that they both involve lots of blood---mine from a phlebotomist stick and not a shark bite, going into a tube and not the ocean.  That's about the extent of the excitement in my week.  But I do get to see my buddies at the phlebotomy lab at Stoneridge.  As I said on Facebook after my last visit, it's nice when the 60-year-old phlebotomist and I can quote the same lyrics from Common simultaneously--"Slo motion better than no motion."  :D

While having all of these the same week really messes up my work calendar and probably causes my admin to direct some not so nice words my way (even more than usual), it's nice to get them all done within a few days of each other.  It just condenses the time I have to think about my disease and lab values, and gives me more time to forget I'm dealing with this.

This will be an important diagnostic week for me for several reasons.  I'll go through them gist by gist.

Liver gist--I'm hoping my liver has softened and gotten smaller so he doesn't make the "this thing is really effed up" face he usually does when examining my liver, if that's even a face a 70ish year old Harvard educated physician could make.  I know my liver function tests are all normal because I got a sneak peek before I went on vacation.  I wasn't feeling well and Tammy wanted to check a few key things before I left.  Thumbs up!

Kidney gist--I'm hoping the protein level in my urine is low enough that he'll take me off my last prescription medication.  One little pill twice a day may not seem like much, especially considering what I've been through, but for someone as anti-medicine as me, it's just a daily reminder that I have Amyloidosis and it would be great to be free from that.  If the protein level has to be normal to take me off of it, it probably ain't happening this time. According to my spreadsheet then it won't be until September 19.  This assumes the recovery is linear (which it probably isn't damn you diminishing returns) even though it looks like this.

Here's the waterfall chart for my protein levels showing how much it's come down since diagnosis....yeah, it's nerdy but I think it's cool....so it is....

Cancer gist--The other gists are on Wednesday and Dr. Efebera is on Thursday.  Before my appointment with her, I have an ultrasound to measure my liver span.  It was 24cm last summer and in January it was 18.6cm.  I don't have a big enough data set to have any idea what it might be this time.  Based on how it feels, it's down a lot...I can sleep on my stomach again, YAY!!  I'm hoping it's below 13cm but anything below 15cm will be a win in my book.

Now, the real magic numbers with Dr. E are my free light chains.  Those are the bad proteins produced by the aberrant plasma cell clone who caused all the problems  Those are the guys who clump up and form the amyloids that clog things up...and, even on their own before they clump, they're toxic enough to cause damage from the oligmers.  Fun stuff, eh.

The test this week will be the first real test of how my bone marrow is working since the transplant.  Last September, I started the oral chemo, Revlimid, to "clean up anything that was left after the transplant", according to Dr. E.  It worked so well that the bad free light chains, the kappas, just showed up in April as "< 0.33", the lower end of normal.

And, just to be sure, I did a 3-sigma control chart based on all my normal values and have this.  Looks like the system has been behaving OK up to this point.

This week will be the first time to check and see if the free light chain process can be in control without any pharmaceutical intervention.  The magic number there is less than 1.94 mg/dl but I'm OK as long as it's still within the control limits...one point does not a trend make.  (Yeah, I can say that now....hopefully I'll have the strength of spirit to be OK if it is above normal.)

So, there's my Gist Week.  I'll get to the other gist in a later post.  As I said last summer, I feel like I can live more boldly, and maybe more honestly now.  I've got a few things I'm struggling with and I need to come clean.

But as long as the gists above say everything is ok, I can handle the other one.

The Pressure to Parent

Probably the worst part about receiving the diagnosis of a terminal, life shortening disease is the pressure I feel to try to be the best, most effective parent I can to my two daughters.  Yes, Amy is 28 and Claire is almost 17 and a lot of the "heavy-duty" stuff is done but I feel they're both getting to the ages where I can help them the most.

I've helped and mentored a number of young women in my career and have always enjoyed it and felt like I'm pretty good at helping them figure out when to make a job change, have a tough conversation productively, improve work relationships, balance work and family...topics like that.  From what my friends and "mentees" tell me, I have a really good ability to frame up the choices people are facing and organize the factors they should consider so they can make an informed decision.

Just last week I had such a rewarding phone call with a former co-worker who is considering a job change and we talked through the pros and cons, how it fit into her longer term career and family goals, and how and when she should share with her boss.  I really get a lot of satisfaction from those conversations and see it as a way I can use my analytical mind, that can drive people who know me well crazy at times, to help others.

I've had the opportunity to do this with Amy some over the last few years as she's started her career and think I've helped her out with some sticky situations at work and the impact they've had at home.  It's been great to be able to invest that skill in the success and happiness of one of my children.

Claire is at that age where parents are not at the top of the list of sources for good advice.  Plus, she's always needed to have a clear view into the direct return on engaging in any activity.  I've had the chance to help her figure out how to be a better teammate on her sports teams and productively deal with personalities that she finds challenging (ie irritating...and that's a lot of personalities.  She doesn't suffer fools easily.)  But there's so much more I feel I need to teach her about how to be a happy, balanced woman and it pisses me off that this disease might take that opportunity away.

Alan and I have been working almost continuously with Claire on the need to do the things people in authority over her expect of her, even if she doesn't see the benefit.  Right now, those things are Alan and I wanting her to be better organized, manage her time better...just develop the habits and practices that help her keep up with the increasing demands of college and a career.  She's been pretty resistant because she doesn't see how it will help her now.

She and I had a great discussion about her resistance last night.  I told her that when we tell her to do things, she needs to trust that we have her best interests at heart.  I pointed out she wants us to trust her in situations where we don't have all the details we'd like and we are pretty accommodating of that.  I told her she shows her respect and trust of us when she does the things we ask even if she doesn't clearly see or believe there will be a benefit.

It was a great discussion.  She never disagreed or got defensive and could clearly see the validity in my perspective.  She's got a tough outer shell that rejects anything weak or irrelevant and I've gotten pretty effective at getting past it.

Not having THESE ^^ moments with my daughters is what pisses me off, and frankly scares me the most, about the single-digit lifespan that many patients with this disease experience.  Now, I've met folks who are 20 years out from their diagnosis, too, but there's no way of knowing where I'll fall on the bell curve--short tail, middle or long tail.  I cried a lot while I pondered this, not out of fear or anger but just sadness over what this might mean.

This insecurity about being around to guide them causes me to over-react when I think something is interfering with my ability to play an active role in guiding them.  I'm getting better but it's somewhat insidious and many times I only recognize it in retrospect.  

The bottom line is that I need to trust God and do my best to stay in the moment without worrying about what I expected in the past or what the future might bring.  That living in the moment, the "I AM", seems to be the foundation of so many of the world's religions.  I saw this on the blog of a fellow cancer patient who was talking about the struggle to deal with the daily fear this diagnosis brings.  She shared this photo.

Daily, I read the "Litany and Novenas to Saint Faustina" that were given to me by John Reiner of Oakland Nursery last summer.  He said it was part of the regimen he used to beat stage IV colon cancer that had metastasized to his liver.  http://www.dispatch.com/content/stories/local/2012/10/28/to-your-health/nutrition-plays-role-in-prevention-treatment.html  I'm doing great at following his spiritual instruction, I'm still not as good at following his nutritional advice that he shared here  Nutrition Confusion but I'm trying. 

Last night, it said, "Saint Faustina, obtain for me the grace of a childlike trust in the Lord God who can do all things.  He is Wisdom itself and loves with an everlasting love."

So, whether it's the guidance of The Bible, Taoism, Saint Faustina, or a modified version of what I shared with Claire, I need to continue to trust that God has my best interests at heart and live in the moment.

THAT is the only way I know for me to have a happy life...regardless of how long that life is. 

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.

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