Another Before and After

As my longer term readers know, I’ve done a series of Before and After blog posts.  Most of them last year focused on how much better I was doing before I got sick and how I was struggling in the after.  Now, as I get past the first anniversary of my diagnosis and treatment, the after is so much better.

At this time last year, I was ending my stay at The James (The official name is “The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute” but I know it well enough to be on a first name basis. Hell, we slept together for 22 nights.)  Right about this time last year, I was discharged from the Bone Marrow Transplant Unit at the James to Dodd Hall Inpatient Rehabilitation Hospital, another Ohio State University facility.  My stay at The James resulted in me becoming very deconditioned.  The amyloidosis caused me to have significant fluid issues and the chemo used in the stem cell transplant only added to the problem. 

My “dry weight” when I went into the hospital was probably about 115 pounds but my total weight was 150 lbs.  I gained 6 pounds after one day of harvesting my stem cells because of the IV fluids they gave me.  I got up to 170 pounds in the hospital.  So, I was very weak from the disease and the chemo and had about 60 pounds of fluid in my thighs and abdomen that I had to cart around.  The fluid in my abdomen compressed my lungs so it was difficult to breathe deeply.  All of this conspired together to keep me flat on my aching back for about 2 weeks.

I have a copy of my medical record that I got when I went to Mayo Clinic for my second opinion.  One of the things I’ve enjoyed reading is the progress notes on my inpatient record over the last 2 weeks.  I was at my lowest point in the fight against this disease and it’s wonderful to see how much better I am this year than last.  As I shared on Facebook yesterday, I was preparing to go on a 20-mile solo bike ride and decided to see what I was doing one year ago.  Here’s the progress note from my medical record--"Worked hard yesterday at mobility. She was up and walked an entire lap around the unit and sat in a chair. She is very tired this morning, but wants to be up more later. Still eating little amounts. Diuresed well with Bumex but Ascites still quite symptomatic."  Yesterday, I rode 19.55 miles at an average pace of 14.4mph…by myself.  Now that’s a before and after!

One activity I missed last year was attending Claire’s lacrosse games.  It was her freshman season and she ended up being first team all conference, second team all district and the second leading scorer on her team.  Normally, I attend every game of hers and take a lot of pictures but I couldn’t attend any games last year.  I’ve prepared the year-end video for her field hockey team and was planning to do the same for her lacrosse team last year but I couldn’t because of my hospitalization.  This year, I’m responsible for taking pictures of the varsity team and preparing the year end video.  In the past, I might have been concerned about being responsible for both.  Now, I’m thankful I can go to all the games, take pictures of the play and compile those into a commemorative video. 

Last year, one of my first outings was to attend Claire’s lacrosse banquet.  I was in one of my big lady shirts, elastic waist pants, hat that Amy had knitted for me and sitting in my wheel chair.  It was hard because I didn’t have the ability to walk more than a few blocks at the time and the prospect of being up and out for more than an hour was overwhelming.  Contrast that with Saturday when I left my house at 7:30am, drove 3 hours to Indianapolis, attended the Patient Day at the International Symposium on Amyloidosis, drove 3 hours back, photographed Claire’s lacrosse game, went to dinner with some of the parents AND…had a beer!!  That’s another big before and after.

  

I’ve also been able to return to my pre-illness wardrobe.  From March 2013 through November 2013, my abdomen was so bloated from the effects of the disease and transplant that a big portion of my wardrobe did not fit—jackets wouldn’t button and neither would lots of pants.  Now, I can go into my closet in confidence knowing that whatever I choose will fit.  Clothes shopping is such a chore for me and selecting outfits is, too, so this is a small, but significant quality of life improvement. 

 

As a native Floridian, transitioning my wardrobe as the seasons change is challenging. In Florida, I had one basic wardrobe.  For the 2 months that I needed a “winter wardrobe”, I just put a cardigan on top of my summer wardrobe.  No change required for spring and fall.  I’ve really struggled with what to wear this spring and was getting really frustrated until I realized…I didn’t wear any spring clothes last year.  It’s been 2 years since I wore most of these clothes.  My spring and summer wardrobe last year consisted of yoga or sweat pants, a tank top that I could wear under my abdominal binder, a loose blouse and tennis shoes.  Since I only weighed about 100 pounds once I lost all the fluid, I would usually wear a hoodie to keep me warm since I had no body fat.  But, it had to be size large to fit over my stomach.   Most of these clothes were purchased at Target while I was still in the rehab hospital (they required that patients dress every day) or after I was discharged.  God bless Alan and Amy for being my personal shoppers in the beginning.

I was going to physical and occupational therapy twice a week in May and June so the therapists got to know me pretty well.  The physical therapist, Vanessa, would often ask me where I got a piece of clothing I was wearing and the answer was invariably, “Target. I just bought this because I didn’t have anything that fit.”  At some point during the first month, Vanessa coined the term “rehab couture” and if she asked about my clothing, she would start with the question, “Is that part of your rehab couture?”  We had some good laughs with that.  A few of those pieces continue in my wardrobe.  Let’s just say I’m not wanting for lounge wear.

While at the Amyloidosis patient day on Saturday, I sat at a table with three other patients.  Each of us had undergone a stem cell transplant and one had also had a kidney transplant.  We all talked at length about how fortunate we are.  That’s right, four people with an incurable, life threatening disorder who have each had their bone marrow drano’d out by a mustard gas derivative were calling themselves lucky.  Yes, having this disease stinks and the transplant was so physically and emotionally hard but each one of us has a normal life.  For many with this disease, a normal life isn’t possible because of the organ damage caused by the disease before they get diagnosed. 

Everything feels so normal now that the before of last year—weakness, pain, fainting, stomach problems…and the big one, fear—seems so far away.  I have flashbacks to those days and it makes me so thankful for the freedom I have now.  Dealing with the limitations of a serious and potentially long-term illness is a type of oppression.  It takes away some of your most basic liberties, like the ability to just go where you’d like and do those things that comprise a normal life.  I feel a special type of freedom just being able to walk outside!

For my first stem cell birthday party, I put together a slide show depicting the 12 months around my transplant.  I turned it into a video and posted it online so others can see my transplant recovery.  You can see it here-- http://vimeo.com/92131205 As I think about the last year, that freedom to do simple things I enjoy is how I’ve measured my recovery.   

As I think about this series of befores and afters, here’s what I know:  No before is permanent.  If it’s a before that you like, cherish it because you never know how long it will last.  If it’s a before that’s trying, just keep pushing ahead knowing that it will change.  Again, nothing is permanent.  As my friend Jim told me last year, every before eventually becomes an after.  The work done in the before defines the quality of the after. 

Now, I'm not saying that work alone can create the after. The after that comes is due to so many things beyond my control. It may not look like before, or even an after I would have chosen. But, the only things I can control are my work in the before and my attitude toward the after.  And I'll give those two things the best that I have. 

So, I’m enjoying this after and pray that I’m ready for whatever changes when this becomes a before.

Healing Service

I gave the message at my church's Holy Week healing service tonight.  Here's what I said....

Hi, my name is Kathy Koontz and as many of you know, in February of 2013 I was diagnosed with Primary Amyloidosis, a rare, fatal, incurable blood disorder.  I chose to undergo a stem cell transplant last April because it gave me the greatest chance of some version of a normal life for a period of time.  For some people, that period of time might be 3 years and for others it could be 30.  Doctors can’t predict how long the transplant will be successful. I remember reading one article that said about 96% of patients will eventually relapse.  The documentation about a study in which I’m enrolled at Ohio State puts it pretty succinctly when describing its purpose—“Because nearly all amyloid patients relapse and treatment is eventually unsuccessful” dot, dot, dot.

96% relapse rate, treatment is eventually unsuccessful?!?!?!  I know you may be wondering why I’m delivering the message at the Healing Service.  No, it’s not another practical joke from Cricket and Stephen….although I wouldn’t put it past them.

There’s a difference between the word “cured” and the word “healed”.   The definition of the word cured is—“relieve a person of the symptoms of a disease or condition.” While the definition of the word healed is—“cause a wound, injury, or person to become sound or healthy again.”  To become sound again.  Finding relief from symptoms is so temporary and focused only on the physical being while, to me, being made sound, or perhaps even made whole, covers all aspects of being—physical, spiritual, emotional and intellectual.  A cure is rooted in circumstance and seems fragile and temporary.  Being healed transcends those circumstances.

My stem cell transplant was aimed at getting me as close to a cure as possible.    And while the transplant worked and my disease is in remission, it’s not the medical treatment that has healed me.  Yes, it’s relieved the symptoms, moved me closer to a cure and helped give me hope for the future, but it hasn’t made me sound.  That took something more.

I was in a great deal of pain that I’d describe as significant and despair-inducing for about 2 weeks during my month-long hospitalization.  Bear in mind, I delivered 2 kids without epidurals..I’ve got a pretty high pain tolerance.  When Cricket used the words “dark, somber and frightening” yesterday to describe the emotions of Holy Week for Jesus, I knew a little of what that felt like.  Now, I’m not comparing what I went through with what happened to Jesus during Holy Week but I’ll say it’s about as close to that as I ever want to get.  The physical pain was bad enough but the emotional pain was even worse.  The days weren’t too bad because my family would be there and there was a lot of distracting activity.  But, at night, I was alone for many hours with my pain and my thoughts, but also and most importantly, my God and my faith.

Many nights, I would think about the Bible passage about the woman who was healed from her hemorrhages of 12 years merely by touching the hem of Jesus’ cloak.  On those nights, I would rest my elbow on the bed, hold my hand up and rub my fingers together begging in my morphine-induced haze “Please just tell me where the cloak is.  I will do whatever it takes to get there but you have to tell me where it is.  Please, tell me where it is!!”

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

There were certainly some “dark, somber and frightening” times.  But at every turn, at each dark moment I felt the love and presence of God and of His people…all of you.  God, and His people, have been there at each step bringing mercies and gifts, both large and small, to make the path a little easier to walk.  As I see this happen with such consistency, it gives me confidence that no matter what medical twists and turns may happen with this disease, I can fully trust in the goodness of a loving God, the sufficiency of His grace and the love and support from my faith family.

This trust in God is like a muscle that gets stronger and stronger the more I use it.  Sometimes, I think about the relapse statistics for my disease and wonder if God is giving me opportunities for my trust to become so strong because I’m going to need it in the future.  Sure, I’ll start to worry but then I’ll think about how blessed I’ve been throughout this process and know that God, and His people, will be there for me regardless of what I face in the future.

And because of that trust, I don’t have to worry about being cured.  It’s proof that I’ve already been healed.

Gratitude and Gator Basketball

As anyone who spends more than about 72 seconds with me figures out, I'm a huge University of Florida Gators sports fan (sorry, not just going with saying Florida Gators, trying to be considerate of my international readers.)  I graduated from Florida, my daughter graduated from Florida and, as my friend Harrison said on Facebook, "I love the University of Florida. As an institution, it connected me with lifelong friends, prepared me for future success, and gave me some of the best teams in the country to cheer for. It's great to be a Florida Gator."

This year, the men's basketball team had a particularly good year.   Pre-season, they were ranked 8th primarily because they were only returning 2 starters and the roster wasn't chock-full of the highly rated superstars.  But the guys came together, improved as individuals, played as a team, went on an historic winning streak and lost in the semi-finals of the NCAA tournament.  Yes, I was bummed they lost.  Not because it denied me bragging rights as a fan but because it meant that I wouldn't have an opportunity to watch this group play anymore. They were, to me, the embodiment of "team."

One Saturday morning in mid-February, I got a phone call from my friend, Patrick, a fellow Gator living in Columbus whom I met through the Columbus Gator Club.  Patrick has been a great friend in our time in Columbus and never more so than during my diagnosis and treatment.  That morning, he wanted to know if I'd like two tickets to see the Gators play Kentucky that night in Rupp Arena.  Say what?!?!?  Gators were 16 games into a winning streak that would eventually reach 30 games and were ranked #3 and Kentucky #14.  In 17 tries at Rupp, Coach Donovan had only won 3 times.  Of course I'd like them!!!

Patrick's father is a farmer in Kentucky, long time Kentucky basketball supporter and has first row seats in a corner of the arena next to the student section.  I couldn't believe that Patrick would offer these seats to me.  He told me that his daughter had a basketball tournament with games going too late for him to get to Rupp for the 9PM tipoff.

Alan was working that night and Amy had plans so Claire needed to be my partner in crime.  She's a big Gator sports fan, too, but predicting the behavior of a 16-year-old girl is difficult.  She was asleep when Patrick called so my plan was to wait for her to wake up, ask her and if she wanted to go and, if she didn't, burn up the phone lines to other Gator club members looking for someone to go with me.

When she got up around noon, I non-chalantly told her about the tickets and asked if she'd like to go.  Her eyes lit up and she said, "YEAH!"  Alright!  We took off for the 3-1/2 hour drive to Rupp around 4 PM leaving ourselves plenty of time for traffic and parking.  We got to Rupp just when they were opening the doors and had time to walk around and take in the history of the place.  The seats were great, the Kentucky fans welcoming and a Gator win made the night.

Here's some of the photographic evidence.

The view from our seats, taken with my phone.

The game finished a little after 11 and it was close to midnight before we got out of Lexington and on to the interstate, facing a drive of over 3 hours.  Now, I usually like to drive fast and that night, I had an extra incentive to get home as quickly as I could.  I felt like I was racing against my consciousness.  I knew I'd start getting sleepy soon and wanted to use my alert time to get in as many miles as I could.  The plan was to try to get home that night, but if I just couldn't make it, to stop in a roadside motel to sleep and come home in the morning.  It was starting to snow lightly that night which might make travel slower but....I had made plans to go skiing with my other daughter Amy and her husband Sean the next day, so for that, the snow was welcome.

Yes, from a purely objective perspective, making plans to go skiing after driving until 3 am that morning seems silly.  But, I've always been one to try to do a lot, maybe too much by some peoples' standards.  Knowing how limiting my disease and treatment had been over the last year, and that it could return at any time, I now have a compulsion to take advantage of opportunities to have fun. When I push myself, it also gives me an chance to validate to myself that "I'm back"--I can do the things, and function at the level from before my diagnosis and treatment.  Just a big middle finger in the face of amyloidosis.  Yes, I'm not afraid to poke the bear.

About 45 minutes out of Lexington on I-75, I was driving a wee-smidge over 80 mph.  I'll leave it to your imagination to quantify "wee-smidge".  The road was still clear but the snow was starting.  I was driving in the left lane and as I came to a bend in the road, I saw some snow in my lane.  There was a car about 1/2 car length behind me in the center lane so, to use Al's term, I punched it to get ahead of it so I could change lanes and avoid the snow.  Well, about 15 seconds after my NASCAR-esque maneuver,  the lights from a police car appeared behind me and I was pulled over.

The Kentucky State Policeman took my license and insurance card and listened to my explanation.  He was very cordial, told me I was only getting a warning and asked me to "slow it down a bit" so I could make it home safely.  Wow, no ticket...that NEVER happens.  Well, to understand what most likely prevented the ticket, you should see the my driver's license picture.  My license expired on my birthday this year which was only 2 months after my transplant.  Here's the face that the policeman saw smiling up from my license.  I told Claire that he either wanted to make sure I wasn't drunk, saw the logic of my actions, didn't want the bad karma from giving the "cancer lady" a ticket or thought to himself, "Of course she's speeding, she SHOULD be in a hurry, SHE'S GOT CANCER!!!"  Whichever it was, I'm glad I didn't get the ticket.  I had been debating "losing" my license so I could get a new picture.  Given my lead foot, I think I just might keep this one until it expires in 2017.

I was really sleepy toward the end of the drive and Claire drove the last 45 minutes.  We got home safely about 3 am.  I got up that morning about 10 and met Sean and Amy.  Sean drove the hour up to Snow Trails and we had a great time skiing together for several hours.  Not a bad 2 days for a 50+ year old lady less than one year after a stem cell transplant.

It was another validation that I could push myself and hold up pretty well.  If the Gators had not been doing so well, I doubt I would have been motivated to make that drive to and from Kentucky in one day.  It was also another validation of how caring and loving folks have been to me throughout this entire journey.  During the drive, I thought about Patrick giving me the tickets and felt badly that he missed a historic Gator win in Rupp.

I wondered about the reason he couldn't go.  Patrick's daughter is in middle school and this was a mid-season tournament.  I was a little surprised that he wouldn't go to the game, knowing that he's as big a Gator fan as me, if not more so.  (He did serve as Albert, the UF mascot, while he was in school so I guess that automatically makes him "more Gator" than me.)  Patrick is in the Naval Reserves and has had two Middle East deployments since we met in 2006.  He said he's missed enough of his kids' activities already and didn't want to miss this tournament.   Patrick and I are friends on Facebook and I know from his "Likes" that he sees some of my updates.  The day before, I had posted this as my status--

"One year ago today, I had my first appointment with my gastroenterologist who eventually diagnosed my AL Amyloidosis, the man who punched my ticket for this crazy roller coaster. Over the next 14 days, I will "celebrate" the one year anniversary of--my father's death (2/18), my father's funeral (2/23), my diagnosis (2/25) and my first appointment with Dr. Efebera (2/28). All in the midst of a busy time at work. Here's hoping I can hold it together. If today was a preview, it ain't gonna be pretty."

As I pondered the real reason Patrick gave me the tickets, I wondered if maybe he did it to take me out of my funk. I realized that it was because he was being a great father or a great friend or, more likely, both.  For all the bad things that this disease has brought into my life, this was another example of the tokens of love and compassion that have been so frequent.

When first diagnosed, I would get overwhelmed with fear.  The fear subsided and was quickly replaced with being overwhelmed with gratitude.

So, thank you Patrick, thank you Gator basketball, and thanks to so many of you who have shown your love and care along the way.  There's a party this Friday to celebrate my First Stem Cell Birthday and thank everyone who's been there for us.  Let me know if you haven't gotten your invite and I'll send it along.  I've got so many people to thank!

Another step toward...?

This week was another opportunity to engage in an activity I really enjoy.  I presented “Analytic Methodology + Change Management = Business Value” at the 2014 INFORMSConference .  One of the conference organizers had seen me present the same information at a Big Data Conference at Ohio State a few years ago and thought it would be a good addition to the conference track he was developing. 

When he called me in January to invite me to speak he said, “I really wanted you to present last year and was disappointed when I learned your schedule wouldn’t permit you to present.” I said, “You were no more disappointed than I was that I was busy last April.”  I crack myself up.

I’ve been presenting at industry conferences and webinars for at least 10 years since my old boss, Monica Woolmer, took me under her wing and we co-presented at the Teradata Partners Conference in Seattle in 2004 (?).  The night after our presentation, a rather drunk fellow from New Zealand was telling me how much he enjoyed our presentation.  I thanked him and he asked me to dance with him.  I explained I don’t dance at professional conferences (I’m a terrible dancer so it undermines my data geek street cred).  He became more and more insistent until he flipped me over his shoulder and carried me out to the dance floor.  Thank goodness we passed by my tall, Norseman looking friend Sturla (he should look Norse, he is from Norway) and Sturla extricated me from the kiwi’s shoulder and guided me off the dance floor.  As you can tell, I’m quite an inspirational speaker, at least within the data geek community.  (This was also the year that my dancing embargo brought Monica and Luke together leading to her move to Australia and their marriage, and my epic arm wrestling tourney that won Luke $200 from betting on me.  7-1 record baby!).

When people see me now, it really appears that I’m back to normal, or as I say to people when they point out that I was not normal before, that I’m back to my old version of abnormal.  And, from a physical perspective, that’s pretty true.  I look and act pretty consistently with how I did before I got sick.  This blog has shared some of the ways I’ve changed emotionally. One of the changes I haven’t discussed much is how I’ve changed intellectually.

There’s a side effect from chemo, especially the high dose chemo I underwent, called “chemo brain”.  There are times when I’ve felt that my brain “just don’t work right” to use a Southern colloquialism.   I’ve encountered each of these examples from the American Cancer Society—

• Forgetting things that they usually have no trouble recalling (memory lapses)
• Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
• Trouble remembering details like names, dates, and sometimes larger events
• Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they are less able to do more than one thing at a time)
• Taking longer to finish things (disorganized, slower thinking and processing)
• Trouble remembering common words (unable to find the right words to finish a sentence)

This column from a Multiple Myeloma patient entitled "What Happened To My Organizational Skills And Focus?" captures a lot of what’s happened to me.    I was expressing to Alan my frustration over my difficulty remembering details, especially names.  He said, “Well some of that is aging.  Just the other day I was having trouble remembering the name of someone I worked with in St. Augustine.”  I replied (and the all caps do not do justice to the vigor of my response), “I’M NOT TALKING ABOUT FORGETTING THE NAME OF SOMEONE I WORKED WITH 25 YEARS AGO.  I’M TALKING ABOUT FORGETTING THE NAME OF SOMEONE I TALKED TO 25 MINUTES AGO!”   I’ve accessed our online corporate directory more in the months since I’ve been back than I have in the preceding 8 years.

The issue with being unable to find the right words to finish a sentence is especially frustrating for me.  A strong vocabulary and precise language has always been important to me and a skill that has helped me in my career.  I can usually find the word I’m looking for but rather than it taking a few seconds, I now have to think about it for a few minutes…or use a thesaurus if one’s available.

One function they say is particularly impacted is “executive function”.  Here’s a description of the activities included in executive function—

Executive function refers to a set of mental skills that are coordinated in the brain's frontal lobe. Executive functions work together to help a person achieve goals.

Executive function includes the ability to:

 manage time and attention

 switch focus

 plan and organize

 remember details

curb inappropriate speech or behavior

integrate past experience with present action

OK, so I wasn’t that good with the curbing inappropriate speech or behavior before but I was pretty solid on the other things.  Bottom line, I’m an executive and should probably have good executive function.

I’ve always felt that my executive function and intellect has been a key to my professional success.  And it’s been pretty scary trying to function with it being reduced.  As I work on a problem or try to design the new org I’m tasked with creating, there are times where I feel like my brain just won’t get any traction.  I’m thinking hard, but my wheels keep spinning and I can’t make progress.  Supposedly, this will improve over time but who knows how long it will take.

This chemo brain issue is why I was so nervous about giving my presentation today.  Would I be able to stay focused and remember details?  Or would I step out there and have nothing to say beyond the words I had on my slide?  Remembering and sharing the details is what has always made my presentations effective—the slides show the concepts and I tell the story of the details behind the concepts.

Thankfully, today went well.  I was worried about how I would react if my treatment took away something I’ve enjoyed so much.  My chemo brain didn’t betray me.   I’ll just have to deal with my thinking struggles hoping that it will improve over time.  It’s just another challenge for me to overcome as I deal with this disease and treatment.  As I said last year about this time when facing my second day of stem cell harvesting, “So, its time to suck it up and move ahead.”

As I think about where I’m moving to, it’s not a “new normal.”   That is linked to an old normal and I don’t want my future linked to my past.   It’s not “normal” because, as folks remind me regularly, normal isn’t part of my idiom.  Its another example of how I’ve looked for a simple label for something and that simple label doesn’t exist.  Maybe I’ll just go with I’m moving to where “I Am.”  I’ll let you decide if that “I Am” is inspired by God or Popeye.  In my case, both are fitting.

Hope, tenacity, resiliency

As many of you know, I had a dear friend, Cara, pass away after a 7 month battle with AL Amyloidosis that had attacked her heart.  We met when Tammy, the Nurse Practitioner for our hematologist, Dr. Efebera, introduced us.

One thing I've observed as I talk to patients diagnosed with this disease is that it's normal to go through a grieving process for the life you thought you were going to live.  I wrote about it in this post  "A Time to Mourn."  Tammy thought it would help Cara to meet someone who had gone through that process and treatment, and was returning to a normal life.  I told Cara she was my little sister in this shitty sorority that neither of us wanted to join.  Kappa Lamda Delta--a little Amyloidosis nerd humor, ha ha.

After declining heart function between Thanksgiving and Christmas that required an extended stay in the heart hospital, her cardiac function had started to improve recently and she found out one week before her death that her hematologic response was still good and the disease in her blood was under control  She and I talked for about 30 minutes on the Sunday before she died discussing information I gathered for her at the Amyloidosis Support Group meeting and the good news of her prognosis.

On Thursday, her husband Bill left for work and she was still asleep.  When a friend came to take her to dialysis, she discovered that Cara had died peacefully in her sleep.  It was a real shock to me, almost a blow to the confidence I've had thus far.  As Tammy and I rode together for 3 hours to and from Cara's funeral, we talked about the impact a patient's mental and emotional state has on their disease process.  Tammy asked me if I'd ever thought about the mental and emotional practices that have contributed to my recovey.

Those of you who know me, know the answer to that question is yes.  I think about things A LOT--concepts, ideas, motivators.  As I've thought about this over the last 5 days, the 3 things I've come up with in response to Tammy's question are: hope, tenacity, resiliency.

Hope
You need hope--a vision of what could be and a belief that you'll get there.  The source of my hope is my faith and relationship with God.   Psalm 40 is my story of this disease's impact on my life (you can see a verse from it in the header of the blog--non-mobile version) and I lean on Jeremiah 29:11 a lot--"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."

My church family, my Body of Christ, supported me every step of the way with encouragement, assistance and, most importantly, prayer support.  This church family wasn't limited to those that attend the physical building of St Patricks Episcopal Church in Dublin, OH or even those who are Christian or religious.  I had support across the country and around the world as friends shared my need for prayers and thoughts.   Knowing this support was there carried me through some really tough times.

One of the first work events I attended after my stem cell transplant was a leadership meeting that featured Shane Lopez.  He's a researcher with the Gallup organization and Gallup calls him "the world's leading expert on hope."  In his talk, Lopez explained the difference between hope and optimism.  Optimism is believing that tomorrow will be better than today.  Hope is believing that tomorrow will be better than today and I have a role in making that happen. Each patient needs to figure out that role he or she plays in making hope happen.   It could be changing to a plant based diet, using supplements, a thorough understanding of the disease (that's mine), a closer relationship with their medical team or any number of things.  I think it's incumbent on the medical team and the patient's support system to understand what that role in making hope happen is for each patient and enable that hope to take root.  Yes, we know medical profession, green tea and/or curcumin (turmeric) supplements have no/few studies proving their efficacy.  But if their use provides hope to a patient and isn't contraindicated, don't put a "road closed" sign on their highway to hope by telling them there's no use taking them.  You can read more about hope in Lopez' book Making Hope Happen.

Tenacity
You need tenacity to go through the physical and emotional challenge of treating and living with the disease.  Sometimes that tenacity requires physical action--work to regain basic functional strength after the SCT, willingness to go through a difficult treatment, training to regain a former performance status, regular dialysis.  Sometimes it requires mental/emotional discipline ie not letting thoughts about the disease overwhelm your thinking thereby preventing you from enjoying the time you have, stopping yourself from playing the "poor me" and "what if" games or trying to ignore debilitating pain  The source of my tenacity is first and foremost my love for my family and friends and the love they have for me.  I will fight to the end so that I am here for them and to make sure my battle honors the sacrifices they have made and the love they have for me.

A second source is my competitiveness.  I've always felt its important for me to "win" if I'm going up against an opponent.  I know a lot of that thinking comes from my brother Rob, who is 16 months older than me, and my dad.  My mom told the story that the first time I stood up as a baby, my brother came over and pushed me down. For the rest of our lives at home, that dynamic played out over and over--putting me in an oil drum and rolling me down a hill; throwing his shoes at me to knock me off my skateboard because I was winning a skateboard race; tying a rope around my waist and hanging me out of a second story window so I could wash them; telling me when I was 5 to touch the tail of a bee he had caught because it "feels neat", throwing a dart high in the air only to have it land in the top of my head. I've always said it prepared me to emotionally survive corporate America, I never thought it would prepare me to survive the battle of my life.  My dad, whenever either of us got a C in school or he sensed any sort of mediocrity, used to inspire us with, "Well, the world needs ditch diggers, too."  I always wanted to prove to my dad that I wasn't going to be a modern day version of a ditch digger.

Now, with a fatal, incurable disease, it's important to have a realistic definition of winning and understand that mediocre results are perfectly acceptable..as long as you have exceptional effort.  For me, winning isn't a cure.  Not to be morbid, but odds are, I'm going to lose this war.  Actually, we all will lose our war against some disease or condition.  As my friend John Rucker told me, who has an inoperable brain tumor secondary to multiple myeloma, "Kid, none of us get out of this alive."  Something's going to win against each one of us.  Is it a blessing or a curse for me to know my opponent?  For my personality, it is somewhat of a blessing.  Knowing my "opponent" gives focus to my competitive spirit.  I think of some of the quotes from Sun Tzu in the Art of War--"If you know the enemy and know yourself you need not fear the results of a hundred battles." and "He who knows when he can fight and when he cannot, will be victorious."

As I told Tammy in a Facebook message (which looking back on it was a pretty crappy way to share something morbid with someone who deals with this and other emotionally and intellectually overwhelming diseases on a daily basis--sorry Tammy) "Have you ever seen the movie 300?  It's about 300 Greeks battling 10,000 Persians. Amyloidosis is like that. You know you're going down, you just want to last as long as possible and inflict as much damage as you can on the enemy."  To be historically accurate, it was 300 Spartans with 700 Thespians and 400 Thebans but really, how can 700 actors help in any battle?!?!? ;)  As Spartan sons would leave for battle, their mothers would reportedly say, "Come back with your shield--or on it."  I'm going to beat this or fight hard to the end if I don't. That saying about it being ok to lose a battle but win the war doesn't apply here.  When I lose the first battle, I've lost the war...I just want the opportunity to engage in as many battles as possible

Resiliency

Finally, you need resiliency so that as you hit bumps and detours on the road to your vision of hope, you can gracefully adjust.  It may require changes in hope--revising that vision of the future due to new developments or changes.  It may require additional tenacity--being willing to go through additional and unexpected physically or emotionally challenging treatments and periods.

It is dangerous to get too firmly attached to any set of expectations because you're dealing with a complex disease in different human bodies that will respond to that disease and treatment differently.  Many of us with this disease read the studies that are published and believe the optimistic results will apply to us and the pessimistic results apply to someone else.  I do that all the time...and that's OK because it drives my hope.  "Sure, I know this disease has a 96% relapse rate but that won't apply to me."  When Urban Meyer was at the (or maybe The) University of Florida, he regularly referred to our academics as being in the top 1%.  Yeah, well that's my hope for my course in AL Amyloidosis, I'll be in the top 1%.

That is my hope, but my plan is to do whatever is required to string together the greatest number and longest duration of "progression free survival" periods. The National Cancer Institute defines progression-free survival as "the length of time during and after the treatment of a disease, such as cancer, that a patient lives with the disease but it does not get worse."  I picture an X-axis of time with a wave representing my disease state rising above and descending below it.  Each time it passes below the axis, into the negative territory, I know that its next ascent, my return to a progression-free state after treatment, will not rise as high, nor span as long as the previous one.  I just need to keep the wave going as long possible 

Hope, tenacity and resiliency are the bricks that make the foundation upon which my mental and emotional state is built.  But you need mortar to connect bricks together to make a structure that is strong.  In my mind, the mortar is a patient's advisors--close family, friends and medical team members whose opinions you trust and who can keep you balanced across the three.  These folks need to operate more as coach than cheerleader.  They need to be able to tell you that you're letting your tenacity overwhelm your hope.  Or you need to be more resilient and recast your vision of hope.  Or you need to increase your tenacity or you'll never achieve your vision of hope.

Understanding how each member of the team balances across those three dimensions can help put their guidance into proper perspective.  No one is perfectly balanced across all three but as patients, I believe our inner circle of trusted advisors needs to collectively span across all three. 

For example, I've learned that Dr. Efebera skews really heavily to the hope side.  That's one of the traits I appreciate the most about her.  I would imagine it's emotionally challenging to be a physician caring for patients whose diseases have such high relapse rates and relatively short overall survival.  Knowing this about her means I need to understand that when she tells me something will improve in 3 months, there's a possibility it may take longer.  In Efebera-speak, that means it could START improving in 3 months.  She's contributing my hope and I appreciate that but I need to make sure my tenacity is in place to do any work required to further that improvement longer than I thought and that my resiliency is strong enough in case that 3 month milestone passes by with little or no improvement.  It's not a time to recast my vision of hope because one milestone wasn't met "on time."  Didn't happen now <> won't happen ever.

My friend, Allyn has also helped with my hope.  Early on, she described the consequences of my disease and treatment as, "A terrible situation with the best possible circumstances."  It made me look more consciously for all those great circumstances that are waaaaay too many to list here.  And as I found them, it reinforced my hope because it was a reminder to me of God's providence.  I remember my friend Cass, who is an Episcopal priest, saying, "What we may call a co-incident is really a God-incident."  It helps reinforce the hope I have.

My husband, Alan, is very focused on tenacity...primarily the work required to get back to some version of normal and to maintain that.  When I got out of the hospital, I had very basic physical therapy exercises to regain my strength, not challenging but tiring--walk backward, walk toe to heel, walk sideways.  Initially when I was discharged, I had trouble even standing up for more than a minute. And I was tired...physically tired, tired of doing things I didn't want to do, just tired after 4 weeks in the hospital getting new bone marrow installed. I was also basking in the glow of surviving the transplant. I had my eyes firmly fixed on that vision of hope of remission and saw the transplant as the road that would get me there.  But a road doesn't get you anywhere solely on its own.  You need velocity to get you to a destination  Alan was very focused on ensuring I was doing the work needed to get me as close as possible to back to normal.  "Drill Sergeant Al's Convalescent Home" is how I described those days.  But I needed a counter-balance to my reliance on hope and I trusted Al (and still do) that he has my best interests at heart and I need to do what he says.  Yes, friends it does happen.

Amy and Claire have each helped with my resiliency.  After the stem cell transplant I went through a period in what I call "no man's land."  I'd just gone through the most physically and emotionally taxing experience of my life and I had to wait another 70-ish days to know whether the transplant had worked.  Sometimes it doesn't. When I got into a state during which I was fixed on having the life I had before the transplant and convinced that I never would Amy told me "To live the life God has given me."  It helped me recast my vision of the future, my expectations, but still maintain my hope.

One night in early August, two days before my appointment that would measure my hematologic response to the stem cell transplant (did all that pain and turmoil accomplish anything?!?!?!?), I was in excruciating pain from my liver.  I was in the kitchen crying, Alan was at work so the comforting fell to Claire.  Now, I've talked about her confidence and strength of spirit before.  When I wanted to make sure she knew how serious this disease is and asked, "You do realize that people die from this?", she responded, "People do but you won't."  That night, she came over to me, put her arm around me and pointed my attention to my vision of hope by saying, "Mom, the doctors keep telling you everything is great.  You've got to believe that's true until they tell you that it's not."  

I am so grateful for the team that has brought me where I am today--God, my family, my friends, my medical team. The second verse of Psalm 40  says, "He drew me up from the desolate pit, out of the miry bog, and set my feet upon a rock, making my steps secure."  God set me on that rock but it was built in partnership with and made secure by my family, friends and medical team.   For that, I will be eternally grateful.

More Milestones

It's been another period of one year milestones, reflecting about where I was and how I was feeling one year ago.  Saturday I went to the Amyloidosis Support Group meeting at Ohio State.  Because there are so few Amyloidosis patients, this meeting covers Ohio and Pennsylvania and is held twice each year.  Last year, fortunately, the meeting was held about 2 weeks after my diagnosis.  I met Sandy during that meeting, a wonderful woman who gave me hope that I could have a normal life with this disease.  Her words of encouragement kept me going through some dark days during and after the transplant.  Sandy and her husband were at the meeting and it was great to see her again and tell her how much her encouragement meant to me.

This period of time between my diagnosis and discharge from the hospital was such a blur.  I was emotionally reeling and trying to mentally process so much that there are many things that happened that I've simply forgotten.  Sandy reminded me that at last year's meeting, Dr. Efebera said about me, "Don't let her appearance fool you.  She looks strong and healthy but she is very sick."  Maybe I blocked that out because I didn't want to accept her assessment.

Last year, I met someone who had Multiple Myeloma and Amyloidosis who told me that he didn't go to the Amyloidosis Support Group meetings because he found them too depressing, that people who attended those meetings didn't seem to have much hope.  He found those that attended the Multiple Myeloma meetings to be much more hopeful.  I decided when he told me that to continue to attend the Amyloidosis meetings to make sure there would be at least one voice of hope in the room.  I remember how much Sandy's message of hope meant to me and I plan to make sure I can share that message of hope with those who may come after me.

Yesterday was Claire's first Lacrosse scrimmage of the season.  She and I have talked several times over the last few weeks about the fact that I have never seen her play Lacrosse in high school.  It seems surreal that I missed an entire season.  She started playing organized sports at age 4 and has played continuously since then. Until last year, I'd probably missed fewer than a dozen games and last year I missed an entire season.

I love taking pictures at her sporting events and have done the year end photo video for her Field Hockey team the last two years.  One of the VPs of the booster club called me to ask if I'd be willing (and able) to take pictures of the lacrosse team this year.  I said, "Of course" not just because I want to help but because it will feel more like normal.  It felt great to be down on the sidelines taking pictures yesterday.  The temperature was in the mid-60s, the sun was shining and I was so thankful to be healthy enough to do it.  Here's a link to the photos....not too bad if I do say so myself. https://plus.google.com/photos/102055039637995406761/albums/5990062683688395537?authkey=CMT7uMar85Dd7gE

Alan and I are planning on taking a weekend ski trip to New York the first weekend of spring break.  Yes, I went skiing at Steamboat for a week last year over spring break but was so weak and I felt so bad it was a real struggle.  Looking back on the trip, I probably shouldn't have gone but I didn't know if I'd ever have the chance to ski with the family again and I was determined not to miss the opportunity.  I was proud that I was able to ski each morning we were out there but it was a real struggle.  I tried to keep up a brave appearance but was really scared and suffering.  I knew things were bad when I would eat a half of a peanut butter sandwich for lunch as if I were a priest distributing communion to myself--rip off one small piece and chew it over a few minutes.  Dinner was also a choice between nourishment and pain.  I knew things were bad for me when I didn't have the energy to ski down the last day.  I'm ashamed to admit I took the gondola down but I knew I didn't have the strength to ski down and was afraid if I tried, I'd end up getting hurt.

Alan will be gone over Mothers Day weekend this year which is the first anniversary of my discharge from the hospital.  But, I'm glad he'll be gone, not because I don't want him around but because he'll be riding the 200-mile Tour of the Scioto River Valley bike ride.  He's done this ride several times since we moved up here and it feels very normal to know that's what he'll be doingh...not at home with me cajoling me to do my physical therapy and installing the shower hand rail and bench I needed when I first arrived home.

I'm so thankful that I can enjoy this normal that's pretty close to the old normal.  How different things look this year.

A Time To Mourn

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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