OK, so now what?

This post has been a long time coming.  I've been turning it over in my head for many, many months.  I'm not sure why I feel comfortable writing it now...maybe it's the approach of the holiday season, maybe it's the recent suicide of a former work colleague, maybe it's the knowledge that I'll have an empty nest in about 624 days (but who's counting), maybe it's the overwhelming sense of normalcy these days, maybe it's a combination of all of those.

When people ask me how I'm doing these days, or more specifically how my health is, I usually reply with, "It's pretty much back to normal.  I'm in remission, my damaged organs are recovering and I just have follow-up care until something changes."  And that's true physically.  Emotionally, it's a bit of a different story.

Emotionally, I look around and think, "OK, so now what?"  Many people fighting serious illnesses talk/write about "not being defined by their disease" but sometimes I think maybe I was defined by my fight.  Now that this round is over...OK, so now what?  I look around and see how much of my life these last two years has been focused on my health.  After that, it's been about supporting Claire in her school and sports activities.  Knowing the first is gone and the second soon will be..OK, so now what?

I don't really have any buddies in this area.   My two best friends are 350 and 2,000 miles away.  Yes, I have a lot of friends in this area and a really wide social circle.  But that expanse doesn't mean that I don't miss having a few close buddies.  You know...the ones who you know that every Friday night, you'll head out to have wings or who call you and say, "I'm watching a movie tonight,  Grab some wine and come over".  It's pretty much the same situation at work.  I'm just missing those 2-3 "go to" friends that you know if they're doing something, you're going to be a part of it.

I found that during my illness and recovery, I was suspended between these two poles in sort of a no-man's land.  I was the center of attention but on the periphery of action and interaction.  As I recovered, I got a lot of, "We need to catch up,  we'll have you over for dinner" but the invites never came.  Or, "We had this get together and we were going to invite you but we weren't sure if you were up to it."

Things weren't all that great before I got sick.  I was wrapped up in work and Claire's activities.  (Or maybe I was/am an a-hole.) Those things aren't as consuming as they once were.  I guess my experience has made me see some deficiencies in my current life.  Just like when I first got out of the hospital and spent a lot of time looking around the house at things that needed to be improved here, creating a lengthy "honey do" list, I've been developing my "Kathy do" list.  Unfortunately, there's not an entire industry with multiple store chains and TV networks devoted to my fixer upper.

There are times when I think I'm being petty and ungrateful.  I consider folks with my disease who would love to have this set of problems and I remind myself how fortunate I am to be alive and living a normal life.  But then I think, "Aren't these normal expectations all part of being normal?"  Except things aren't normal.

As you can see, I've got a lot to figure out.  Do I move back to Florida where I think I've got some buddies?  Do I try to build something here I've never really had in my almost 9 years of living here and if so, how?  Do I reset my expectations?  It's like an episode of "Love It or List It" for my social life.

I do know that I'll continue to try to get up every day knowing that if I'm alive and not incapacitated with illness or treatment, there's something God wants me to do.  That's where my focus has been and where it will continue to be.  Like so many challenges throughout this journey, I just need to do what God puts in front of me and trust that He'll work the rest of it out in just the right way, at just the right time.

The "13 Wardrobe"

I finally had a chance to get my winter clothes out and put my summer and fall clothes away.  I decided it would be a good time to go through my clothes and purge things I didn't wear anymore.

I usually follow the rule of "if I haven't worn it in a year, get rid of it."  That works great....unless you have a two year period during which your normal wardrobe doesn't fit, as I have.  During the winter of 2013, I was so bloated that I had to wear really blousy shirts and elastic waist pants.  While I was better in the winter of 2014, I still couldn't wear much of my normal wardrobe.

So, now it's been almost three years since I bought any "normal" clothes so the nice work pants that I do have are waaaaaaay out of style.  I had to get rid of most of my "normal" winter work pants.  Yes, it's an excuse to go shopping but I don't like to go shopping, especially for work clothes, and I don't really want to spend money on that now, anyway.

I also got rid of many of the blousy shirts and elastic waist pants that were the staple of my wardrobe from May 2013-April 2014.  When I would show something to Alan that I was getting rid of, he'd ask, "Is that a 13?" ie did you buy that in 2013.  If I said, "Yes", he'd say "pitch it."

I do get the feeling that I'm tempting fate when I get rid of those clothes...like I should keep them around in case I need them again. And if I keep them, I won't need them but if I get rid of them....Logic tells me that I shouldn't live my life preparing to relapse but being a Gator fan has made me pretty superstitious.  I've been banished and have banished others to inconvenient locations during Gator viewing parties because the team started doing well.

Logic did prevail and I did get rid of them.  I hope my co-workers will understand if they see the same pants or skirt a bit too regularly since the wardrobe is really depleted.  I figure if the male anchor on the Australian Today show can wear the same suit for a year ( read the story here ), I'll be OK if I wear a pair of pants more often than I'd like.  I promise you they'll be clean.

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.

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.