Saturday, December 28, 2019

Tunnel Hill 100: Living as if Living Matters

I wanted to title this "Running After Heart Failure".  I like the ambiguous way it can be read.  However, I can be superstitious, and I never want to tease the Fates with my silly word play. The fact remains, we (my doctors and I) do not know if this is "after", temporally speaking, or if I really am still in hot pursuit, running after it...that will take more time to know. Maybe I'll save this for my book...

Over the course of my life I've returned to this quote time and again. This year, when I find myself fearing for my mortal existence, that really drives the point home - and forces me to perhaps do some things that are more scary than I could ever have understood before.

In June, after five months of cardiac rest and being on horrible meds that made me feel like the walking dead, my first good echocardiogram results came back. These four months were decidedly not a time when I lived a good life. I did it as a means to a hoped for end. My act of hope was quietly registering for Tunnel Hill 50 miler. My thought then: I want to run the 100 (and already knew that I could switch up), my last real race before my world began to unravel.

An act of reasonable unreasonableness.

In July, I tell my cardiologist that I want to get off the drugs (which I am supposed to stay on "indefinitely") - they are having an overwhelmingly negative effect on my quality of life. Base on my quick rebound, he agrees, with some reservations. We plan another echo to monitor things. I continue gradually ramping up my mileage. Paces are still far slower, but I am feeling more "normal" after getting off the drugs. Things gradually proceed. At the end of August, I have another echo: Results, normal.  

On September 7th I message Steve Durbin, The RD of Tunnel Hill:
"Hey Steve, I'm registered for the 50 (again) and want to upsize (again). :P I'm assuming that's still allowed"
Now the question is: Is this the "smart" thing to do?

When I started making noises about doing something like this (and no, I did not share this with many), the overwhelming response was: Don't jump in too fast. Wait. Wait. Wait.

Wait for what, for how long? Wait for a year? Will that be adequate? Wait for two years? Wait for a few more good echos? What will it take for me to ever feel comfortable again? The fact is, I will NEVER feel "comfortable" again. I will never again have the luxury to take my body for granted. That convenient fiction is shattered and done for me. For the rest of my life I will have to have regular echos, and I will dread and fear each one. Myocarditis sometimes comes back and there's no way to know or prevent this from happening. Some never have a reoccurrence and some have many. The challenge is to keep things in check - keep those thoughts rational and the risks reasonable. Unless you've been told that you could drop dead in an instant, you can not understand this. Consider yourself fortunate. For me, the safest thing to do is to stop doing the things that allow me to feel the most alive that I can feel.

And so, I choose to live reasonably unreasonably.

The days leading up to Tunnel Hill I can't help the thoughts that pop into and pulse through my head. I am running this solo, again, so I plan to carry my phone, at night. I don't usually do that, but my experience last year was that I was alone for hours at a stretch during the night. I order a new RoadID, with my medical info. I do what I can. But the fact remains: If something goes wrong, it will go very wrong very fast. And, I will have no prior warning.

Maybe I'm just soaking in self absorbed awfulizing! Much ado about nothing?

But, what if...back and forth I vacillate:  This is reasonable...this is unreasonable...You need to do this...It could kill you...Is it worth it? Why must you do this? Why must you do this now? 

I'll admit that part of it is about defiance - fuck this shit that's happened to me. Fuck this year that I've had to sit on the sidelines praying that what I was doing would matter. Fuck existential uncertainty (which of course is always there whether we choose to notice or not). Fuck fucking viruses. I'm angry. I'm sad. I'm depressed. I'm scared.

And, I am hopeful. Through all of this, I am hopeful.

If I lose that, then I am already gone. But there are moments, when I cry from the fear and frustration of it all. When my heart feels like it is racing at 3 am, lying in the dark thinking about the possibilities. I touch my pulse - It's not racing - it just feels that way inside my head. 

Ultimately it comes down to choosing my life instead of just allowing life to happen to me. It is my act of saying YES to living on my own terms.

But, I am still scared. Those of us who take on scary challenges, who allow ourselves to be vulnerable, who risk "failure", need to accept that things may not go well. That's part of the game we play. But this is the first time I've had to accept that "failure" can be final.  
“It is only by risking our persons from one hour to another that we live at all.” ~ William James

So, how did it all go? Well, I'm here writing this so obviously I survived, so far. The journey was the point, not the end. But getting to the end is a good thing too.

About two weeks before the race, my breathing issues reemerge - this after several months of minimal issues. I do everything I can do to get things to calm down, but in the end I contact my ENT and she puts me on another three week round of antibiotics. I start those late on Wednesday. The race is Saturday. This is not good, but I really have no choice.

I fly out on Thursday to Chicago. Sandra fetches me there and we drive south. I feel like utter crap. Maybe it's the antibiotics. Maybe it's the bug my husband and daughter started fighting a couple days ago. Maybe it's worry. Maybe it's my heart. Who knows. I planned things so that we would have a day to chill before the race. I spend most of Friday in bed, except for a short shakeout run and a trip to packet pick up. But Friday night I feel better, but not great.

Saturday morning we wake a bit before the alarm. Coffee. A bagel. Dress. Finalize plans. Add the finishing touches to the drop bags. Arrive in Vienna without incident.  It's cold. 20ish degrees. I finish getting ready just as the gun goes off.

I have some goals in mind, but I will have to see how the day unfolds. If my breathing issues kick in then all bets are off. I'm unsure how I will handle that. I am determined not to run myself into the ground like I did last year. One of the biggest challenges in running a relatively flat, runnable 100 is pacing. It is easy to run the first 50 fast and then hit the wall for the second 50. The DNF rate at Tunnel Hill is generally around 40-50% probably for this reason - Also becasue you can "buckle-down", earning a 50 mile finish for getting to 50+ miles. "Easy" 100s can be very hard if you aren't smart! So, I take it very easy to start. I do, however, immediately realize that "very" easy doesn't feel quite as easy as I would like.

Being on "cardiac rest" for five+ months means basically weakening your heart. When you take stress off of anything, it gets weaker if that is not balanced with work.
Work + Rest = Stronger.
Rest - Work = Weaker.
While my training was good, it was too condensed. My heart is nowhere near where it was last year. I can only hope that being smarter will pay off.

The miles tick along. I run with Sandra and her friend Jodi. We chat away the miles - or mostly they chat, since I'm not really a chatter, and I am a bit stuck in my own head.

We hit the wetlands turnaround at 13ish miles and let Sandra and Jodi go on as I walk and take a gel. I know I need to start switching up my paces a bit more. I catch up with them before we hit Karnak at 16ish miles. At this point I decide to start adding in short walk breaks each mile. Jodi goes on, champing at the bit, and I tell Sandra to go on. I'll be walking .10 mile at every mile beep. I'm maintaining a good pace, around 10:30-11 this way and eventually catch and pass Sandra. She's moving well and doing her own thing. We hit 26ish miles at Vienna. I am, as usual, not efficient on the aid station end. I fuss with my bottles, change shoes, use the potty and head back out. I catch up with Sandra who came into the AS behind me, but left ahead of me. We run together for a bit, but my walk-run doesn't really work with her run. We pass 30 miles and I comment on how she has less than 20 miles to go - which I guess is not what she wanted to hear, but since I have less than 70 miles to go, I though that sounded pretty damn sweet. Hahahaaa. Nope. She's hit a bad patch, and I'm hitting a bit of a good patch, so I let her get through that and I move on knowing she will get through it.

At somewhere between 31-33 miles, my breathing starts getting wonky. That patch, that was good, comes to a screeching halt. I don't know what tricked it, but the tickle starts and then my throat feels like it closes up. And the coughing starts. I am struggling to maintain my pace and my breathing is labored and uncomfortable. But here's the problem: I can't really tell what's going on with my body when this happens. Is my heart pissed off? Do I just need more fuel? I feel instantly weaker when this happens - but why? I get to the Tunnel Hill aid station feeling pretty awful. The only way that I can describe it to people is that I feel like I am breathing through cotton balls stuffed down my throat. I see Sandra get in and out of the AS fast. I am starting to freeze since my body feels like it's just powering down. I add clothes and head out for the 2+ miles to the turn around. I see Sandra coming back in, looking good, and that will be the last time I see her before I reach Vienna again.

The next 12+ miles are rather unpleasant. It's cold, I can't breathe, and it feels like every sip of fuel further clogs my throat. Somehow I make it back to Vienna. I'm about 2 hours behind where I want to be. Sandra is there, having finished strongly, and PRed by hours, she helps me get my stuff together. My breathing is so labored. I haven't been able to eat, and I feel weak. All I can think is: I should stop. I don't want to stop.

We sit in the heated tent and I get some hot soup. Soup is what always saves me. Having squandered a good 45 minutes trying to re-group and trying to get my breathing to settle down I accept it is futile. I tell Sandra I need to go and she needs to go back to the hotel to sleep. I assure her that my original finish goal is not going to happen, if I finish at all. So, she needn't get up early to be at the finish. And against all reason, I head back out into the dark, cold night for the second 50 miles.

The next 26 miles is just a grim exercise of putting one foot in front of the other. Last year the pancakes at Hammond Pond saved me. The thought of them keeps me moving. I get there, grab two and discover that this year they have added chocolate chips. Normally I would be so down with that, but tonight they cause my throat and stomach to seize up. I march on with grim determination and no hope for reprieve.

On my return trip, however, the pancakes are replaced with mash potatoes. Oh, mother of god, these mashed potatoes are manna from the heavens. I eat two cups and then reluctantly move on. they save me, but not for long.

My last pass through Vienna is not good. I literally stumble into the heated tent, dizzy, unsteady, freezing cold. I see others with the same vacant stare I wear. I suck down noodle soup. Potato soup. I sit close to the heaters trying to get my core temperature back up.

I'm terrified of this last 24 miles. It's 3 am, and I am now many many hours behind my goal. There's a very lonely 7 mile stretch coming up, from mile 78.5 to about mile 85.5, where you see very few people and there is only one unmanned aid station with water (usually frozen at this point). This is the point I have been worried about since I decided to do this race again. But given how rough I feel now, at 76 miles, I'm just, honestly, scared. I envy those who have clearheaded friends helping them - heading back out into the dark with them.

Somehow I muster the will and courage to get up and go.

It is a long, lonely night. November nights are very long. I keep moving and occasionally pass someone. My only consolation is that I keep passing people at regular intervals. No one passes me for that last 24 miles. By the time I get to the last turnaround, I start see people in even worse shape than myself. As I head back for the last 9 miles, the marathon runners, who started their race that morning, trit-trot by offering a steady stream of encouragement: "Great job!!", "You are amazing", "You are such an inspiration", but all I want to do is run. This does not feel amazing in the slightest. I want to do what they are doing. I'm barely moving at this point, between my labored breathing and my inability to eat much for hours, I cannot get my body to move. I am shuffling, along, and if feels like torture.

For the past 20+ miles I try to rework my goals. What will I be satisfied with at this point? I decide on a number that at this point is reasonable, but still hard. Unfortunately, I don't have a net time on my watch (that was replaced months ago with heart rate when I needed to run by that. I didn't change my settings before the race, and I am regretting that now). With about 3 miles go I just try to will my legs to run just ONE mile at a "normally" easy pace. Just ONE!, and I will reach my new goal. But my legs will not. Few really know what this feels like unless they have been there. I've had people laugh at me when I tell them that it took every ounce of willing and effort to "run" a 15 minute mile.  But when all you want is ONE stinking 11 minute mile, but all you can get are 15s, you become much more humble. And you never laugh at another's tale when you have never been there.

And so I cross the finish, 3 minutes behind my "goal", revised now about 10 times.

But, I did it. I finished. I did not quit when I wanted to, and I desperately wanted to at least 20 times.

Should I have done it? Probably not.  Did I do myself any harm? I honestly do not know. Have I told my cardiologist about all of this? Hell no. Call me stupid if you wish, but we all must decide the terms of our own lives and take responsibility for those choices. I have and will continue to do so.

2019 was not my best year, and yet in some ways it was the best year I could hope for. I do believe that I am in a much better place in many ways then I was a year ago, though I have dark and scary days still. I am not the same person I was. Some of that is good and some of that I need to make peace with. I do hope that 2020 is better in the ways I want it to be, and that the lessons I need to learn are not so hard, because there's still a lot I want to do before this book is closed.

Thursday, September 26, 2019

The Things That Change Us

“The dangers of life are infinite, and among them is safety.” ~ Goethe

Sometimes we never "go back" to what we were before. Of course this is an undeniable truism of life - life changes us every single day, in fact every single moment - but most days we don't notice the small and subtle changes. But then there's the big things. The things that shake up the status quo.

Since I last wrote I had another echocardiogram. That one, three months after the previous normal one, also came back normal. So, based on that, I'm normal. I don't normally consider myself very 'normal' but in this case normal is fine with me.  Though, my cardiologist will do more echos periodically to make sure everything keeps working right, I guess I can really start living again. But, there's this giant unknown hanging over me.

When you are diagnosed with something like Myocarditis, and with it heart failure, it changes you, or at least it changed me. I never gave my heart much thought. It seemed to be working fine and kept allowing me to do some pretty crazy things. The fact that I had no symptoms even when my heart was failing, is still rather disconcerting. In fact, when I tell others this, I sense real shock and maybe a little cause for pause. I can see the *WTF* look in their eyes. They don't really believe me. But it's true. We never really know what's happening inside - even those of us who are pretty damn aware of what's going on in their body. If it could happen without my knowing before, what if it happens again? How will I know? 

Before everyone starts points to my coughing/breathing issues (which everyone does!!), let me explain how that all played out:
The issues began around January, 2017. I remember running Black Canyon 100k (DNF at 55 miles in freezing, dumping rain/sleet with hypothermia). My real breathing issues began here, having started that race with a "little" post-cold upper respiratory stuff that became chronic hacking after that race (Warning: Do not run a freezing cold, raining, 100k with an URI!!). After that I was diagnosed with bronchitis. My coughing was so violent that I ended up straining my diaphragm, resulting in pain for months. The fact is, and I can see that clearly now, that issue was never entirely resolved. Slowly and insidiously, the coughing and breathing issues continued and increased. I kept asking my doctor for some help in resolving it: First she diagnosed me with exercise induced asthma (via email, not a physical check up) and prescribed an inhaler. Case closed. But it wasn't. The inhaler did nothing as far as I could tell. I kept telling her that I felt that the whole thing started in my sinuses. She kept dismissing my issues - probably because she believed it was much ado about nothing - after all, I could run a hundred miles. After running Silver Rush 50 in July 2018, and having a horrible attack that lasted from about mile 30 to the finish following a bad electrical/hail storm at 12,000 feet, and then hacking uncontrollable for hours after (also rainy, cold conditions), I demanded tests. A pulmonary function test was ordered and came back negative for asthma. She said, "Okay, let's test your theory and have you start daily nasal steroids" (note: I had been using these for some time the previous year, following Black Canyon, but they caused a perforated septum!). The steroids got me through Leadville 100 (well, 100k) without any breathing issues. But then a month later, having backed off the steroid use because I didn't want to keep using that crap, the breathing issues returned. I got through Tunnel Hill 100 and had an appointment set for a week after to focus on figuring this out once and for all. My doc spoke with the pulmonologist who wanted some tests before moving forward. I went in for another pulmonary function test, this one with a methacholine challenge, and that was negative. Then came the echocardiogram to "rule out" heart conditions. Anyone who's been following this knows how that went. I had the echo three days into the flu, and had a fever of 103 during the test, but since it took two months to get the test, I did not want to reschedule as everything was on hold until all the tests were completed. I called my doc the morning of the test asking if there were any reasons not to have it done while sick with a fever. She responded later:

"The flu-like illness shouldn't affect the results.We do have a cause of your shortness of breath, but it isn't good news. Your heart function is decreased (this is called cardiomyopathy) but all the valves are working normally in the heart. This means we have to determine a cause of this decrease.It is possible that being an endurance athlete has contributed..."

Of course running is to blame - and in some cases it is, though running rarely causes this particular issue. Most endurance caused heart issues are electrical. Mine was the plumbing. 

I have since learned that a fever can cause temporary cardiomyopathy. But a fever/flu can also be a symptom and/or cause of Myocarditis.  So, thus began my months of "cardiac rest" after all other tests came back negative and/or normal. 

But here's the thing, after my normal echo three months later, my coughing/breathing issues had gotten worse. My cardiologist, from the start, agreed that the coughing had no connection to my heart function.  And as my heart function was now normal, the breathing was at its worst ever.  My runs would start out great, and within 2-4 miles I was reduced to a gasping, breathless walk. I had seen an ENT while being treated for the heart stuff, and she diagnosed vocal cord dysfunction, only because she saw no other issues. VCD is a grab-bag type diagnosis - its cause can be sinuses, GERD, damage to the vocal cords, even anxiety - but I was still convinced mine was sinus related. My theory was that I had managed the sinus stuff with sudafed (taken every so often when things got bad, never regularly) prior to the heart issues. But while being treated for the Myocarditis I couldn't take sudafed.  So, once I was off the heart meds I emailed my ENT: "Can we just try a round of antibiotics, just to see if they have an effect?" She agreed to test my theory and within two weeks there was substantial improvement. By week three, it was all but gone. The "all but" is still an issue and I am managing it. I still have very occasional, but manageable, issues and will probably need to do another round of antibiotics - but in the end it has been determined that the cough was completely unrelated to the heart issue.  People do not believe me, or don't want to, which is why I am putting it all down here. 

The truth remains: 
I had NO symptoms of heart failure. 
I now have no symptoms of heart failure.
In the event that my heart once again fails, will I have symptoms? 

Hmmm. While the past does not guarantee the future, my experience is not very reassuring. 

So, what to do now? Sit around and wait? Wait for what? How long should I wait before I feel confident that it won't happen again? Will that ever happen? Will waiting provide me with peace of mind? 

When runners die running, people rush in with comments like: 
"He/She must have known something was wrong."
"Watch your heart folks"
"Pay attention to your how you feel."
"How could someone not know something was wrong?"
“Security is mostly a superstition. Life is either a daring adventure or nothing.” ~ Helen Keller
So, will I ever feel the way I felt before this all began?  Not physically, I feel completely normal physically - but mentally.  In the past I never really gave a second thought to pushing myself - I don't mean day in and day out - but I mean in a race or training in general. 

Sometimes you just have to choose to live. You don't get days and years back. Yes, there are times to sit back and wait, heal, recover, rebuild. I've done that now.  Have I given it "enough" time?  No one knows. The doctors don't know. I don't know. No one knows.

So this weekend I will run a 50k. It's my first actual "Race" this year. It is a training race, hopefully, for Tunnel Hill 100 in November.  Tunnel Hill was my last real race since this whole nightmare began, and for me, returning this year is deeply symbolic and important. It's something I need and if people want to weigh in on the "prudence" of that, I will only say: Please keep it to yourself.  This is MY life. This is my ONE life. 

I refuse to define myself by something that has happened to me. I will not reduce myself down to this "condition" that just happened to pick me. Yet, some things happen in life that do change you profoundly. They redirect priorities, make you aware of things that never dawned on you before, open your eyes to a new perspectives. And these things can not be passed onto others, for they are all ours. We can try to explain, but no one can understand another's experience, and no two people have the same experience. I hope to hold onto the awareness that I've gained and push aside the fear of the unknown and unknowable. 
“Go out on a limb. That’s where the fruit is.” ~ Jimmy Carter

Friday, June 7, 2019

What's Next?

The update for now, as far as I know it:
Last Wednesday I went in for my second echo. It had been four months of "cardiac rest" and waiting and wondering and hoping and fearing. The unknown. Doing all you can and hoping something will make a difference. What that entails is: First, reduced activity. I could and did still run, but I cut my pace and mileage significantly. My general aerobic pace dropped by about two minutes per mile and my mileage was cut by a half to two-thirds in volume. So, I dropped from 60-70 mpw to 25-35 mpw. My pace dropped from about a 9:15 for general aerobic runs to 11+ and I ran nothing harder than that. Second, I began taking beta blockers and ACE Inhibitors with the aim of reducing as much cardiac work as possible allowing my heart to rest and recover from heart failure. The medication makes the volume and pace cut easier since I generally feel like crap when I'm running. 
Everything hinged on that second echo: Would there be improvement? Would there be further loss of pumping function? Would I need a biopsy? Since the range of possible outcomes for myocarditis is anywhere from complete recovery to heart transplant and/or death attempting to do all you can do to give yourself the best possible outcome is a daily act of faith. The reality is that there's not much one can do to alter the situation except support your body as much as possible and hope for the best. But you can do all the "right" things and still not recover from this. 
The months and weeks and days are counted down. The week leading up to the echo I have dreams - dreams that they tell me things have gotten worse, the worried looks, the plans of what will come next. The unknown. I push these aside as best I can, and hope.  
Finally the day comes. I have the echo. I wait for word of the results. And wait. And wait. The next morning as my family and I head off for a trip I notice a voicemail. I am terrified to listen. I press play and quietly listen as my husband and daughter sit beside me, noticing nothing.  "The results are good. Your heart is pumping well again". I send an email: What does this mean now? Can I get off the meds? Can I really start running again? Does this mean I'm "all better"? What does this mean now? 

Doc: "RE: Echo

There is a risk of relapse, if medications are stopped prematurely. I would plan to continue the medications at least for the short term -- I'm assuming you feel OK on them. We could discuss tapering off of them in the future. As far as running, you certainly could start to increase your activity. I would get back into things relatively slowly and avoid anything too competitive for the next few months.

Heart function is something that can change. We should continue to monitor this periodically with an echocardiogram..."

This is a time you want to hear: "You're good to go". I want to be "fixed", healed, done, not just "better". But that's not how these things work. I am impatient. I am, also, still trying to resolve the coughing/breathing issue that clearly is not cardiac based but which lead to this whole thing to start with. 
Realistically Leadville is out for this year. I have not withdrawn from the Barkley Fall Classic and hope to be able to at least give that a fighting go, but we shall see. A couple people in the BFC FB group took me to task for not dropping, asking me: "How would you feel if you were on the waiting list?". Or the classic paternalistic comment that assumes I'm an idiot: "Drop. Your health is more important".  I will confess that I am sick to death of getting "well meaning" (but uninformed) advice from strangers who know nothing about me nor my situation. 
I am also hoping to go back to Tunnel Hill. Since that was the last race I ran, I would really like to be able to run that as kind of a symbolic act of defiance against the odds and a return to what I love doing. Time will tell if that will happen. 
For now I need to keep doing what I've been doing. Admittedly that's not what I want right now. I want to hear that I can resume living, in the sense of returning to what I have been doing for low these many years. But, actually, I have resumed living with a completely different mindset. I will never be the person I was. I will never again take for granted the things I did before. For that I am thankful.

What is Myocarditis?
"In simple terms, myocarditis is a disease that causes inflammation of the heart muscle. This inflammation enlarges and weakens the heart, creates scar tissue and forces it to work harder to circulate blood and oxygen throughout the body.
While we often associate cardiovascular conditions with elderly populations, myocarditis can affect anyone, including young adults, children and infants. In fact, it most often affects otherwise healthy, young, athletic types with the high-risk population being those of ages from puberty through their early 30’s, affecting males twice as often as females. Myocarditis is the 3rd leading cause of Sudden Death in children and young adults...[M]any patients live long, full lives free from the effects of myocarditis. For others, however, ongoing cardiovascular medication or even a heart transplant may be needed. Overall, myocarditis which can cause dilated cardiomyopathy, are thought to account for up to 45 percent of heart transplants in the U.S. today." ~ The Myocarditis Foundation

Saturday, April 13, 2019

One Day You Won't Be Able To Do This. Today Is Not That Day

“I was complaining that I had no shoes till I met a man who had no feet.” ~ Confucius
We are always changing. We are never the "same" person when we go to bed as we were when we woke that morning. But some things accelerate change. Some things change us even against our will. The outcome depends greatly on our attitude about the whole thing. 

As so many of my friends and athletes head off to Boston, alarms keep pinging me, sending helpful reminders that I have a Southwest flight to Logan Airport leaving shortly. And yet, here I am, sitting in my living-room, typing. That seat was cancelled several weeks ago, but the alarms never got the memo.

I've been here once before when I hurt myself shortly before Boston 2013. But both cases could not be more different. 

I see the smiles and excitement. I've felt that too.

I hear about the nervous energy. I've felt that too. 
I hear about the weather angst. Yeah, that I've felt all too often.

One of the gifts running (or any hard challenge) brings is big emotions - some we enjoy and others we are less comfortable with - but it's all big, and raw and inescapable.

It's called, feeling alive! I've felt that, too. 

In 2013 I admit that I had a big case of "feeling sorry for myself" syndrome. I moaned and complained and cried and cursed the running gods and cursed myself for my idiotic ways and hated myself and wanted to hide under a rock. I cried and cried and cried because I couldn't run Boston. 

Well, perspective changes everything, and it sure as hell, has changed me. 

What a freaking whiner. 
What a spoiled baby, I think now. 

And this year I have already shed tears. Some tears come from the same place and others come from much deeper within. I have little doubt that more will come.

“Cultivate the habit of being grateful for every good thing that comes to you, and to give thanks continuously. And because all things have contributed to your advancement, you should include all things in your gratitude.” ~ Ralph Waldo Emerson
So now things have changed. Some things force themselves on you whether you like it or not. They change your worldview. We can't know things if we don't know them though we may think we know them, or "understand", we do not. For most of us that "knowing" involves a direct experience. So many claim to "understand" things they, quite honestly, can't understand because they have not experienced it. You can *try* to put yourself in someone elses shoes, but nothing can ever compare to those shoes being your shoes. I find myself time and again wishing to wake from this nightmare that seems to make no sense. How could this happen? How could this happen to me? Well, things happen to people, even me. Even you. I may have done nothing whatsoever to "deserve" this, but here I am.

I have a friend/former athlete who is going through something very similiar:
No known cause.
No known risk factors.
No "cure".
And she recently said to me "You and I are the healthiest sick people".

And that's how it feels - like someone is playing a cruel trick on us and all we can do is hope and pray that we recover. But we can do nothing else. We can only have faith and then try to appreciate the things we do have now.

If you are paying attention, and IF you survive the big lessons, then you emerge with greater understanding, an expanding range of emotions, a perspective that can only be gained through hard times and battles.

If I come out of this, if I can even attempt to live as I now wish to live, then I will thank my lucky stars for this experience. Right now I'm not there yet, and I know that I may never actually return to that place I miss and took for granted. 
“Let gratitude be the pillow upon which you kneel to say your nightly prayer. And let faith be the bridge you build to overcome evil and welcome good.” ~ Maya Angelou
Not that long ago as my husband and I were fretting or fighting over something I already recognized as stupid and insubstantial in the grand scheme of things, I said to him:
"You know, things will not always be this good. There will come a time when we will look on these worries and concerns as a silly waste of stress. I wish we could understand that now."
And like a bad Hallmark movie, it all comes true. Poof.
Let's see how they handle really scary and difficult stuff, giggle the Fates.

And so life takes a dramatic turn. Some close to me try to hold on to what was, but that is gone forever. Either join me where I am now, or stay behind, but I can no longer be that person.

Things do not and cannot remain the same. There is no such thing as "same". You really cannot step in the "same" river twice (Thank you, Heraclitus). Many desperately try to make life the same all the time and this is where the attempt to avoid pain and fear and change undermines real living. At least that's how I see it. Yes, I want to wake from this nightmare. I want to understand the WHY here. But there is no why to discover. I will create the why.

I will confess that I have little patience for whining about things that I now believe to be trivial. Yet I also fully recognize that I too whined about stupid shit. At least it feels stupid now. I would give anything now to have the luxury of whining about the things that mattered before. I whined about missing Boston 2013 because I had a torn ligament. Oh my god, if only I had that concern now! I've whined about the weather. I've whined about it all - so please understand that I am not "judging" that - that's normal. I would trade in a second. I am not saying that my perspective is now "better" but it is different.

To all those out there doing the things they set out to do, remember that you GET to do these things. If you are not enjoying it then why do it? And, if you are enjoying it then why are you whining?

I usually don't pay attention to most signs at races, but one hit home some time ago:
"One day you won't be able to do this. Today is not that day"
That sign has always brought me to gratitude, even if I felt like hell - and no matter what it is that you can do today, there will come a day that you can't do it. And while this is a depressing thought and not one we need to live with constantly, it is important to recognize. 

Yes, this has been a bit of a ramble. That is the state of my mind presently. And as I wrap this up, I am dinged once again. My flight leaves in one hour. But, the snow has now stopped and the robins have begun to sing. I am grateful for that.  

Saturday, March 16, 2019

The Waiting Is The Hardest Part

Eightish-ish weeks in. The waiting continues. This is all a waiting game. Waiting to see if my heart can and will heal. Waiting to see if my life will look anything like what it always has looked like. Waiting to make plans. Waiting to dream again. Waiting for something, anything.

The worst part of all of this is the not knowing. I can't plan. I can't dream. I can't hope without the nagging feeling that I'm setting myself up for crushing disappointment. I am trying to make peace with being in the moment. I am trying to use this time to be present - to notice when my ego and striving desires take me away from now.

The "differential diagnosis" is currently "myocarditis" which is heart inflammation: 
"Myocarditis is a rare, sometimes fatal disease characterized by inflammation of the heart muscle. Although it is an important cause of dilated cardiomyopathy (enlarged weakened heart muscle that can’t pump well) worldwide, often progressing to heart failure and transplantation, myocarditis remains poorly understood and is often undiagnosed. Most cases of myocarditis result from a prior viral infection, although many other causes have been identified. The true incidence of myocarditis is unknown due to diagnostic difficulties...." 
"Although myocarditis is a relatively rare disease that in many cases resolves without further problems, the importance of recognition, early diagnosis and prompt treatment in high-risk individuals cannot be overstressed." ` The Myocarditis Foundtion
It's rare and often undiagnosed. It is the number one cause of sudden death in both children and adults. It can be caused by a virus (such as the flu) or bacteria, or environmental toxins, or an autoimmune response. It can happen to anyone and there's not much you can do to protect yourself. The actual number of cases is unknown since many die without ever being diagnosed while others spontaneously recover without even knowing it's happened. 

In my case it was discovered by accident. 
"The two most powerful warriors are patience and time." ~ Leo Tolstoy
So what am I doing? I'm resting. Well, that's resting compared to what I used to do. Am I still running? Yes. But quite a bit less and for the first time I am running according to HR, keeping my HR generally below 120. I am eating well and upping my natural anti-inflammatories. I have now been alcohol free for eight weeks, and feel great about that. In my situation ANY alcohol is a bad idea. I am taking some drugs (which I HATE!) to reduce stress on my heart and allow it to rest and heal. 

What's the prognosis? We have NO idea. I must continue to act as if my actions will make a difference but this is somewhat out of my hands. One of the frustrating issues in dealing with a heart condition is that often the answer is rest and time. Unlike cancer, you don't get to "fight" the little shit that's trying to kill you. Instead you have to do exactly the opposite - you must pull back. You must not fight. You must turn the other cheek. This "waiting game" is not generally how I deal with life. I've never been one to "avoid" problems - I deal with them head on. So I try to embrace the things I can do and then "inaction", resting, not "doing" becomes action.

The general consensus is that it takes 3-6 months to see how things are responding. So, I have pulled out of all my races through the first half of the year. Chances are good that 2019 will be a "rest" year for me and hopefully I can return to the life that I so want to live.

Yesterday I dropped out of the Boston Marathon. I was contemplating walking/jogging it. I could actually run it and I could run a decent time, even now. One of my goals was to run Boston for 10 consecutive years. I've run: '12,'14, '15, '16, '17, and '18. Notice that '13 is missing. That omission has bugged me ever since. That year I pulled out 10 days before the race due to a pelvic sprain I sustained during my last track session, doing a stupid thing. That year I also could have run but since I was pretty much in the best shape ever, I just didn't want to "jog" it. The money and the fact that I had my first 50k a couple months later convinced me that dropping was the best option. But that meant that my consecutive runs would be restarted at '14. After running 2014, the experience of being in Boston and running the year after the bombing was so overwhelming that I wanted to return "for as long as I can get in". So, here I am. My 7th Boston, 6th consecutive Boston will not be. Now, this may qualify as a major First World Problem, but we all do have a right to have our goals in life. I know it really doesn't matter and yet it does matter to me.

Many erroneously assume I am "injured". I haven't been injured in many years, actually since that sprain in 2013. And in fact now I see running injuries so differently - those complaining about stress fractures and tendinitis??? I try not to say "Hey. At least you aren't an "otherwise healthy" person with a heart condition that might kill you". As tough as tendinitis is, it ain't gonna kill you. I won't say these things to a suffering person, but I will think these things, as I believe most who have confronted their own mortality will. Some experiences dramatically change your perspective.

So for now I sit and wait. But I'm not "just" sitting - I am being present. Sometimes that means I cry and feel sad and sorry for myself as I see others signing up for races, getting exciting about the coming of spring and running cool races, etc. I cry because I want to live my life and I also just want to survive. I cry because I do not want to leave my husband and life partner so soon, and because I desperately want to see my daughter grow up. I cry because unless you have had to look your own mortality in the face, you can not begin to really understand. You can try, but it won't work. And that can be lonely. Others can say "You are going to be alright", but that's not how life always works. People die. I am no exception.

Other times I am grateful for this lesson. For this chance to refocus a bit - to perhaps reexamine my priorities. Of course I want it to turn out well. Regardless, I am not the same person I was a couple months ago. We never are, but some things accelerate change. I only hope to have the opportunity to continue to grow through all of this.

To be continued...

Thursday, February 21, 2019

The Middle: The Ups and Downs of Sharing

“Life can only be understood backwards; but it must be lived forwards.”  ~ Soren Kierkegaard
If you give away too much, you suffer a loss because "too much" implies more than you should give for your own well being. If you give too little, you may feel cut off from others. The balance is hard to find.

Over the past three weeks I have experienced everything from support and attempts to understand, to condemnation and writing me off as one of the walking dead. It's been hard, very hard. I'm angry as hell. I'm angry this is happening. I'm angry that people claim to "understand" when they can't possibly understand. And when I tell them this, they get defensive and dismiss my reaction. They attempt to tell me that I will be fine. Some wish to dismiss the truth of what this all might mean, for me (not for them because this shit will never happen to them). Some wish to use my situation as inspiration to do what they can do while they can do it - and that's great and it's something I've encouraged people to do since starting this blog in 2011 - so that's fantastic that they're doing it -  except for the inference (due to the timing of these constant proclamations) that I'm done for and fucked. It's great to inspire, but not at the cost of ones life. I guess no one listened before.

Maybe I'm just being sour about the whole thing. But, hey. I have a right to be pissed off at the wold right now.

On the other side there's the silence from some. Some just can't deal. I'm a pretty normal person. I'm healthy. I generally live my life with gusto and go after what I want. I take pretty good care of myself. I do things most others my age cannot even fathom. And yet, this is happening to me. We need to distance ourselves from such glaring examples of human mortality.

So, I've gone back and forth on this: Share...don't share...share...don't share.  The fact that I've shared so much, that I've exposed my soft vulnerable spots, and that some have taken the opportunity to poke or kick those vulnerable spots I chose to expose, well, that's just mean.

And I can't help but feel that some will follow along just to witness my downfall. There is the "watching the train wreck" impulse in many. They want to follow along. But it's like watching another crappy Netflix series.

I took a risk sharing as much as I did, and perhaps if things turn out well I will return and tell my story after the fact. But telling it while I'm going through it has proven dangerous and painful and eye opening in a very hard way. Yes, I've received a lot of support, and I thank those who offer it. But those who have chosen to be mean cut into a painful place that I hope no one out there has to discover in themselves.
“To dare is to lose one's footing momentarily. Not to dare is to lose oneself.” ~ Soren Kierkegaard
So for now I will focus on me and those who are closest to me. I wanted to share my story only because I thought maybe someone else out there is like me, and maybe someone out there could learn from my example. But I guess I'm wrong.

To paraphrase Socrates, it is better to make yourself as good as possible rather than building yourself up by silencing, laughing at, and cutting down others. As Socrates faced his death, condemned for speaking awkward, uncomfortable truths, he warned those who condemned him: "[T]he easiest and noblest way is not to be crushing others, but to be improving yourselves" (Apology) It is better to stand for something and to say it, to use your life as an example, than to constantly shut down those who take the risk, speak out, and share their truth. Most, it seems, don't want to hear it.

Until later...

Thursday, February 14, 2019

The Beginning: The Teacher Appears

“The world is full of obvious things which nobody by any chance ever observes.” ~ Arthur Conan Doyle

I stand waiting for my turn at check in, the imaging waiting room is packed on a Friday afternoon. The woman behind me, at least 10 years younger than me, is laboriously breathing in and out. In and out.  Out of the dozen siting in chairs, waiting for various scans, I'd estimate that about 90% of them look sick. Very sick. Some in wheelchairs. Some hooked up to oxygen canisters. Many with a glazed over, dazed look in their eyes. 

It is almost 3 p.m. and I have not been allowed to have any caffeine for the whole day. Now, I don't drink a lot of coffee. I have one not-so-large mug in the morning and that's it. But, take that away from me and I feel the withdrawal effects. Add to this not being able to eat for three hours (yes, I know that's not very long, but it is for me!), and I feel rather a mess. My head is throbbing and my blood sugar feels like it has bottomed out. 

A nurse approaches me asking me if I'm here for a TM stress test, and we make our way to the "nuclear medicine" side of things. She attaches a bunch of electrodes to my body, holding all the wires together with a belt fastened just a bit too tight around my belly (I hate things strapped to me when I run!) places the pesky O2 reader on my index finger - the doctor comes in, asks me a few questions and then informs the nurse, "This is going to take a while. We need to put her through the paces". He looks at me and says, "This could take 20 minutes. Are you okay with that?" "Sure" I respond. What are my choices? 

So we start at a fast walk, picking it up gradually. I am feeling just a bit out of sorts - lack of caffeine and low blood sugar is not a good combo for me. Add in the tail end of the flu and a still fairly compromised respiratory system, and things could get ugly fast. But things click along. Things speed up and the angle increases at distinct intervals. Every few minutes the nurse wraps my arm with the blood pressure sleeve as I try not to fall. God, this is tedious, I think to myself.  Due to all the straps attached, I have to run while holding into the front bar. The whole damn thing feels so awkward and unnatural. Meanwhile as I'm trying to keep my shit together the doctor is chit-chatting with me - talking about Leadville and the peaks he's bagged there, asking me questions that I can barely answer without completely falling flat on my face and becoming one of those pathetic YouTube TM fail videos...This is me, potentially!

So at some point I am gasping for air and the doc says "We'll be cutting things back in a minute" as I fight to keep it together for just one more minute. The TM slows, the angle drops, and I'm walking again. 

As the doctor enters data into the computer he comments, "This is what's called a "negative" test. You're in the top 1% for your sex and age, but given what you do, I'm surprised it's that low."

"Could that possibly be due to still recovering from the flu?" I ask.

"Absolutely. Make sure you tell the cardiologist that when you see him."

I leave, get more blood drawn and make my way home. Still with zero answers. Every test thus far, save the echo, has been negative or normal. Now I have to sit and wait another week for my appointment with the cardiologist. Waiting waiting waiting...

Over the past week I've continued to run. I'm keeping the pace easy. I'm wearing my heart rate monitor (something I rarely do). I'm keeping things at about 10 miles or less. Everything feels just fine. The juxtaposition of my echo results and my empirical experience is just so hard to reconcile.

“You can’t go back and change the beginning, but you can start where you are and change the ending.” ~C.S. Lewis

My date with the cardiologist is on Valentines Day. How appropriate. I get up early since I'm not sleeping well anyway and head out for an easy five miles with the dogs - just in case I'm told I can't run anymore, I want to get this run in. It is early and quiet. I hear a few meadowlarks bringing in a beautiful morning. It's a peaceful, wonderful, soul calming run. I try to take it all in. Just in case. 
“Anyone who has lost something they thought was theirs forever finally comes to realize that nothing really belongs to them.” ~ Paulo Coelho
Anxiously I wait in the small examination room. Dr. Drake knocks and walks in. I stand up, we shake hands and then sit back down. 

He asks, "So, where did this all start? What brought you here?"

"Do you mean, why did I have the echo?"


So I tell him the story: about the past year, possibly two, of coughing, which became more noticeable and bothersome over the past 10ish months. About the inhaler prescribed that seemed to do nothing...about the races and training runs where I had no issues...about the races and training runs where I was wheezing and hacking...the negative pulmonary function tests...the nasal steroids that seemed to help, until they didn't...about the symptoms when they happen...and that the echo was ordered just to "rule out" possible heart issues that might be the cause...I explained that I've never had heart pain or strange water retention...and on and on. I tell him that the issues feel like they originate in my sinuses. But then the echo results came back...

We talk more about my running, and I admit that I am not very good at taking recovery time between big races probably because I tend to feel pretty good shortly after - Yes, some general fatigue and soreness, which I always allow time for, but never experiencing weird swelling or other typical issues that many other runners often claim to experience. And, in fact, I have remained uninjured through all of this for many many years.

He then looks at my record: 

"So you quit smoking in 1985 after just a few years of smoking."

"Yeah. College. I still ran though." 

He chuckles.

"How about alcohol?"

"So." I begin. "I think this has been an issue. Once I started looking at what "moderate" means I realized that moderate means a very small amount compared to what I thought it meant. To be honest, I've been thinking about this for several years, and wondering if I might be overdoing it, self-medicating to deal with stress - though that's just a lame excuse - but, yeah. When I actually started thinking about it, I realized that it's not been healthy in any sense - even though everyone around me would call it very moderate."

So, we dig into this some more. For my size, 5'5'' and 110 lbs, going beyond moderate and healthy is surprisingly easy. 

"With women in particular," He notes, "I would say the majority of these cardiomyopathy cases, have an alcohol component. I've had patients who had two glasses of wine a night and had cirrhosis of the liver. The question is: How large are those glasses, or even one glass?"

I joke about all the lame drinking memes out there and how they all just feed into the general acceptance of excess, and most of us don't even question it, or if we do, we fight to dismiss the thought as quickly as it enters our consciousness.

"Well, I've had no alcohol in two weeks, almost 3 really, and I can say one thing: I feel a gazillion times better even though I thought I felt good before - I actually didn't. And it's not just physical, it's psychological I've been working on letting things go and I think not drinking has helps with that as well."

He looks at me hard and asks: "So you just stopped after the echo results?"

"Yes. If this is the wake up call I had to have, then so be it. But I just really hope I can turn it around."

Sometimes a teacher appears, ready to teach you a lesson you may not realize you need to learn, only to come to understand that it's the most important lesson you've learned thus far. You may not welcome the teacher at first, but if you listen closely you will feel the deepest gratitude. Sometimes what can kill you can also save you. At least that's my hope.

He explains that he thinks, but can not be certain as time will tell how things respond, that this can be repaired, fixed, reversed.  He agrees with me that the heart issue is a red herring concerning the cough, and that it does indeed sound like a sinus issue. He explains that addressing the heart damage will take months, not weeks. I will need to be on a medication that blunts the effects of adrenaline on my heart, since in these cases the body sometimes over responds by demanding more of the heart when the heart needs to rest and recover. I need to monitor my blood pressure (which is quite low). And I need to wear my HRM when running and keep things very easy, 70% or below. He suggested no long races or runs for now. After I get settled on the medication, I will be hooked up to HR harness for 24 hours to see how things go during a typical day. After three months I will have another echo to see where things are. Then we will proceed as needed.

He explains: "I do think that alcohol is a factor here, along with possible chronic over-training (meaning that I train a lot over time, not that I over-train at any given time). And the combination may be the issue."

Of course, I want things to happen faster. Three months. Three months is not a lot in grand scheme of things, but still. It means no Boston this year. I was trying to get 10 consecutive years. This pretty much shoots that goal to shit. But, this is my life I'm dealing with. It also means that Miwok 100k is out. Plans to run Behind the Rocks 50k again, also out. 

But, all of this really doesn't matter. What matters is seeing my daughter grow up. What matters is maybe returning to health and running with a new approach to it all. What matters is growing old, I hope, with my husband. What matters is being here for my friends. What matters is the future, the real future, not just the next 3 months or 12 months, or 18 months. I will do anything for that amount of time, or more, if it means being given another chance. 

Now, all of this could amount to nothing. It is still possible that the cause is not what we think and that this is not reversible, and that thought terrifies me. But for now I choose to be hopeful and do everything in my power to give myself the best possible chance at getting my life back.

This Saturday I may cry because I'm not running Black Canyon 100k. On Patriots Day I will most certainly cry, missing what should be my 7th Boston. In May I will have to miss a race I have wanted to run for years. This all really really sucks. But if this is the teacher I need to have appear at this moment and this is the lesson I must learn, I also welcome it. 

To be continued...

Everyone Seems to be Looking for "Motivation"...

  "Motivation is what gets you started. Habit is what keeps you going" ~ Jim Ryun It's January. For many of us that means cold...