Medical Update

Thank you for all of the messages asking for an update. Sorry it was so long coming. 

First of all, I'm fine. Breathe.

Over the weekend following my visit with the oncologist, they emailed my lab results to me. I immediately dissected it and called my doctor with questions. She gave some thoughts but wanted to let the oncologist have his say and get his thoughts on it before we decided anything. LONGEST WAIT EVER.

I finally had the follow up appointment this past Tuesday. The oncologist video conferenced the meeting with my immunoneurologist in Nashville. They both agreed my issue was not a cancer issue, but was an acute reactive immune response caused by the neurotoxin and flared up by higher intensity runs and workouts. They explained how some of the abnormal levels were actually not too concerning and why. They explained what they were looking for specifically and how they interpreted some of the abnormalities. They discussed what we were doing right and what needs to be more carefully monitored. They really liked that my coach and I had been noticing patterns of when the responses were occurring and asked that we start tracking the reactive days in our training plan calendar for them to look at more closely. They gave me a few more guidelines to follow and changed my follow up timeframe to more frequent lab checks for a while, but I'm still good to go with waiting 6 months before next doctor visit. They gave their full blessing to continue running and working out, including the high intensity things. They feel we are still tackling it better than any of their other patients and that we're giving them a lot of good information. The downside is that this is going to continue to be a daily thing for me. Forever. But, the responses are fewer and further between, and are not as bad when they are happening, and are not lasting as long (when I cooperate and give my body the rest it needs to stop the overreactive response).

So, in a nutshell, the neurotoxin continues to fight and try to win, but we are continuing to gain ground on it and I keep getting better, despite some really rough days and weeks. I have to do a better job of some daily decision making in regards to running and working out (and that's on me - not my coach), but I can also breathe a little easier without the cancer word being held over my head. In order to stop the responses when they happen, I have to stop and completely rest for a day or more, depending on how severe the response is.

This week has been really rough, with the change in schedule, addition of long work days, and high stress with Don being gone, back to school chaos, and doctor visits, among other things. I've been dealing with some random sore spots and spells of nausea. Some of my labs are still out of whack and I'm feeling it. The lack of sleep, high levels of stress/anxiety, and not feeling great have led to some irritability and over-sensitivity, which has led to some strains in communications, leading to some friction in some relationships. Those situations are now (unintentionally) adding to the stress, despite my best efforts to just keep breathing through it and stay calm. If you are someone who has been affected by this - I'm sorry. I'm doing my absolute best and I truly am trying. Please be patient and understanding. I know it's me and not you. Just bear with me. But, please also remember that if I have to stop talking and walk away - it's to keep me from getting overly upset or emotional and then being thrown further into another reactive response. I'm not trying to be rude or disrespectful. I'm trying to survive.

I have a race tomorrow that I'm not feeling extremely confident about, mainly due to the rough week I've had. I'm hoping to get some sleep tonight before the race, and maybe sleeping in a bit Sunday morning to try to minimize the stress responses. But, Monday is coming, with all 55 teenagers in my classes and the other 2000+ in the school. This is, by far, the toughest time I've had going back to work, and while my admin team is aware of what's been going on and has my back, there is nothing, absolutely NOTHING, anyone can do to stop my body from reacting to the overload of noise and activity that is about to assault it in the coming week. I've already been informed by both specialists that this year may involved taking a lot of sick days, and that I'm going to have to play each day by ear. One day at a time. For the next 200 days. This should be interesting.

But, again, I'm fine. Thank you for the continuous messages and concern. We're still moving forward.

Challenge Accepted

We've had a new program at the gym this summer - OCR training - started by our running coach as a means to train people for mud runs, Spartan races, and other obstacle type events. Now, most of you know I LOVE obstacle racing and have been doing it for over a dozen years, even before I began distance running... long before I met my coach and heard him talking about it. But as soon as he put it out there, I was in. The first couple of workouts I was thinking "this is too easy." And THEN he hit me with one that left me feeling like I'd just climbed Mount Everest, using only my arms. It was an awesome, challenging workout. I loved it. Even though it kicked my butt and left me unable to lift my arms over my head. Or sit down normally. It was the best.  

Well, last night, OCR almost did me in. I wasn't about to tell anyone, but every single thing we did was something I probably shouldn't have been doing, and I was hurting. A lot. I was not about to quit though. Especially with the week I'd had, especially with the fact I'd basically had to beg to be allowed to participate on a Thursday evening before a race weekend, especially because there were two people there I didn't know, and especially because of the personal goals in the back of my mind reminding me I had work to do. I pushed through, knowing I was going to regret it later, and wondering if I'd have to bail on my race on Saturday because this was an intensity that was going to send my body into chaos. It wasn't so much a leg thing, so there's that hope. But, I desperately needed that intensity and outlet for the frustrations and irritations of the week, and I knew I needed it to stay on track if I had any hope of accomplishing what I was setting out to do. 

I woke up this morning and felt every single thing I knew was going to hurt, plus some I didn't realize I'd worked on. I have a huge bruise on my wrist that is totally grossing my boys out. It's gnarly. My wrist is also rock hard and stiff. The tendon is locked as tight as it can possibly be. It looks and feels pretty bad. My neck and shoulders are stiff and sore, and my butt is on fire. Talk about working some glutes. I'm telling you - these OCR workouts are for real. They are tough. They are unconventional. They are fun. But they are probably not the best thing to do before a long work day or race. 

There is also one problem I've seen coming for a while that blew up this morning - I can barely walk. It's not the nerve stuff. I stepped wrong earlier this week and felt like I had pulled or strained something in the arch of my left foot. I felt it every time I tried to sprint in last night's OCR. I knew I shouldn't be running on it, but I wasn't stopping. This morning, I couldn't walk. At all. Once I got shoes on I was able to, but it hurt. Stairs are still impossible. Especially coming down them. Running tomorrow morning may be impossible. I've been trying to ice and stretch and do range of motion stuff, but it's definitely not helping, and having to walk all over our building is making it worse. I'm going to do the high dose of Naproxen today and tonight, and hope it gets me through the race. Then, I'm actually going to listen and take a full rest day. Or two.  

So why the drive to do it no matter what? I had decided in really late spring or early summer to sign up for the mud run in my hometown and an obstacle race out of town my boys & I had done before. I was also looking for trail races and toying with the idea of going back to Spartan next year. Then, my run coach mentioned he was starting the OCR training at the gym. I was really excited and fully on board. What I didn't say was that I had already signed up for the Knoxville Mud Run, with the goal of placing. Obstacle races and trail races were something I was always good at and placed high in. It is the only run-related events I have ever been able to excel at. I knew if I had been able to actually RUN at the Mudder's Day race, our team would have been in the top 3. The obstacles have never been a problem for me. Even in Spartan, I was able to successfully nail every obstacle along the course until the final 5 - and they were ALL upper body. My arms were shot by then and there was no way I could do them. I swore I'd never do another Spartan until my upper body strength was on par with the rest of my body. But for the local, fun, mud runs and obstacle races, if I can just get back to running at a good pace, I can do really well on them. For trail racing, it just means getting back out there and gaining confidence again. I'm working on that. I would love nothing more than to go back to the Mudders Day race in May and win - or at least place. It's the perfect race for me. I know I can do it - if I can just get all of the pieces of the puzzle to fit together at the right time. 

There's just one problem with this area of goals and races I've kept to myself - no one else believes I can do it. I've heard others saying how "he said he thinks I can win it" or "he thinks I'm going to place or win." Well, for certain, that has never been said to me. Not even anything remotely close to it. No one has said anything more than "I know you can finish it." No one here knows how good I used to be at them. No one knew this was my area of expertise. I used to be the adventure programmer who came up with the obstacles to challenge groups with and teach others how to successfully complete various obstacles. No one here gets it. But, that's okay. It was a long time ago. I have a long way to get back to where I was. But, the trail race on Saturday showed me that I was much closer than I thought I was. As bad as the Mudders Day race was on the running side - the obstacles there showed me I still had it too. Last Saturday on the trail, I was within the same pace where I was 10 years ago when I was consistently placing in the top 5. Granted, that was in NYC and not east TN. But, I'm close to where I was, and closer to where I want to be than I thought I was before Saturday. 

Unfortunately, I feel like I'm being set up for failure. It's a hard pill to swallow that I'm not expected to be able to perform as well as others and that the goals for me are to "just finish." Not just with runs and obstacle races, but trail races too. That goes against everything I've ever known. It's always considered a success if I just make it to the finish line in one piece. Since when am I content to just finish and not reach for a higher goal? Oh, that's right. I'm NOT content with that. But others are. It's like that's all anyone thinks I'm capable of. I know I'm not a runner who is going to win or place in a road race. I'm not a speed runner. But when it comes to trail races or obstacle races, it evens the playing field for me. That's where I'm at home. I'm still not going to cause waves there - but I can accomplish more than "just finishing." When your coach is winning the longer distances by margins of 10-15 minutes, it's a little overshadowing. He's phenomenal. I'll never be to that level - but that's okay too. That's not my goal or the path I'm on. I love watching him run, win, and do his thing. It's inspiring. What I don't love is constant reminders around me about me how they are expected to win or place, and how they are working so hard to live up to that expectation, or how they've done something for the first time and get loads of praise and tell me "you'll get it one day" - when I've already been there-done that YEARS ago. I hate being reminded that the medical crap has kept me from a lot. I hate that it completely changed my body and added a new obstacle to every challenge. I never react or respond to the constant comments, but in my mind, it just adds more fuel to the competitive fire that was finally reignited. I do LOVE that now I have a renewed passion for something I'd once thought I'd have to give up on forever. I'm loving having something that gets me fired up and competitive again. I'm finding myself working 10 times harder and pushing myself a lot more, knowing that if I am going to reach my goals, I've got to keep up with my own teammates who have the added advantage of someone believing in them. I'm having to dig deeper and remind myself that YES, I CAN, and find a way to keep believing in myself and not give up before we ever get there. Every run, every OCR training, every swim, every workout at home, every race - it's all become very, very important. Every medical appointment has become important too. I know I HAVE to stay on top of some issues to stand a chance. I know I HAVE to do things the right way and take care of myself to make it possible. With that comes old struggles of working out too much, not eating enough, trying to lose weight faster, letting the competitive drive push me to keep going no matter what, even when I know my body needs a break. It's hard to keep everything balanced. Especially now that I'm adding full time work to my schedule. One more advantage for the stay-at-home peeps. I wish I had more time to work out and keep up. I'm making it work in the limited time I have. I know I am fighting an uphill battle and my chances are slim. But once, just once, I'd like to have my time and place to shine again, doing something that I love, and I'm willing to do whatever it takes to get there, whether anyone else believes in me or not. 

Not the Answers we were Hoping For

I don't even know where to start this blog entry. My mind is going a thousand different directions and I'm still not sure how to put into words what I'm thinking or feeling. 

My doctor called as soon as her office opened on Friday morning. I knew when the phone rang it was going to be her. I knew she was going to tell me my labs were wonky. I was not wrong, though I really wished I was.

To her credit, she started the conversation asking about my leg and the race Wednesday evening. I knew that was not why she was calling, but I did appreciate her showing she cared about what she knew was important to me. 

Yes. My labs were all over the place again. A couple of things are easy fixes. Where some levels were really low before and we added vitamins/supplements - some of those were off the charts sky-high now and supplements need to be stopped immediately. Okay. Great. One of them is my B12. Apparently it's so high that it is likely the cause of the intense nerve pain - as it will bind to the nerves and cause a lot of issues. It should take less than a week for it to regulate, and hopefully ease some of the intense pain soon. That's a relief. I can keep running, even though the next few days may still be a bit painful. 

She took a deep breath and my heart jumped. I know I ended up holding my breath. She said the other bigger concern is that my serum ferritin is high. Where we thought I was anemic and my iron was low - I'm actually not. My iron level was fine. The problem is it's being mismanaged by my body, and stored and dispersed improperly. If this causes the iron to go into the brain, it can cause some symptoms like irritability, mood swings, headaches/migraines, unexplained fatigue, leg pain, unexplained weakness, and ringing in the ears.... everything I was experiencing just before, during, and after Tahoe. When I asked her what would cause this spike in the ferritin level, she hesitated before answering. 

I knew instantly what was coming. I'd been expecting this for weeks, though I'd never said anything to anyone about it. When my brother, my mom, my husband's sister, and my friend were all diagnosed with blood cancers... the symptoms were very similar. It's always in the back of my mind when I experience the leg pain and the fatigue beyond comprehension. 

When she finally spoke, she told me she did not want to jump to any conclusions or give me any type of diagnosis. She mentioned hemochromitosis, a hereditary condition that can cause ferritin levels to spike, and then she mentioned that it could also be nothing, just another random immune response to the neurotoxin causing crazy things to happen in my body. However, to get a better idea about what was going on and what was causing it, she wanted to send me to a blood specialist who would be able to diagnose it better. With my history of family members with blood cancers, my own medical history including the exposures at Ground Zero, my symptoms, and my labs, she thought it was a good idea to go be seen by the specialist right away. What reminded me of how great a person she is, and not just a great doctor, is that she said, "Kristi, I'm so sorry. I know you've had a rough year with doctor appointments and tests, and I know you wanted and needed a break, and I'd be totally okay with you putting this off and waiting a few months, but if it were me, I'd go ahead and talk to the specialist now, and even if it's just a conversation to get more information for now, I wouldn't put it off." I quickly and calmly agreed to go immediately, and she said they'd get it scheduled and I'd get a call from the specialist's office. I was so calm through the whole conversation and even asked a few questions, that she got worried about me. I'm sure she was expecting a meltdown. But it never came. She made sure I was good to go and then we hung up. 

I was running late for my run class because of the call, so I quickly threw together my swim lessons work bag, my workout bag, and my change of clothes for afterwards. I grabbed my water and headed out the door. On the drive to the gym, I went over the conversation again, and knew I had to tell my coach. I didn't want to tell anyone else, but I knew he needed to know. I also needed him to know - because no one else on the planet could help me keep it together after that was thrown at me. I was SO glad it was a Friday and run class day. I was so glad that the first person I'd be interacting with after that phone call was my coach. I was not looking forward to interacting with my teammates, though, which is really unusual. I just didn't want to talk about it and didn't want them to know yet. 

I went through the normal motions of arrival at the gym - threw stuff in my locker, got what I needed to run, headed upstairs... but my mind was far from there. I didn't want anyone to know anything was going on, so I quickly put the "I'm fine" mask in place and walked across the fitness floor to the trainer workstation. Of course there were several people standing there. It couldn't have been a quiet morning with just 1 or 2 staff members hanging around. I said hi to everyone and I could tell that my coach immediately zeroed in on "something's off," despite my best attempts to avoid eye contact. Sometimes he knows me TOO well. I quietly explained I'd just gotten off the phone with my doctor and I literally felt his heart skip a beat at the words. To his credit, he didn't call any attention to our hushed conversation. I told him we at least had confirmation that it's all been nerve stuff and explained the B12 thing. I let him know the other parts as I kept a smile on my face so no one else realized anything was up. By all outward appearances to everyone but my coach, everything was just fine. But, inside, there was an F-5 tornado ripping my heart apart. 

The funniest thing after that was that I was the only one who came to run class. So it was just my coach and me. He wasn't prepared to run, he didn't really want me running unless it was an easy couple of loops, and we went back and forth about what to do. Finally I said, "how about just a walk and talk?" He jumped at that and we went out to the track. The timing of this was indescribably perfect. Of all days to end up with just me at the class and time to talk... it was just perfect and exactly what I needed. We were able to discuss the doctor's call in more detail and discuss impact on running and work. We were able to talk about the race Wednesday, and other run stuff, along with just  life stuff. It was a much-needed breath of air for me. I was still amazingly calm at this point. I went from the walk to my swim lessons, calm as could be, and made it back to the car without any trouble.

As soon as I sat in my car, my phone rang. I answered and heard, "This is the Tennessee Cancer Specialists" telling me my doctor had asked to set up an appoitment for me as soon as possible. They had me scheduled for July 16th and would be sending me a new patient packet and more information. They asked me if I had any questions. I couldn't think. My mind was still stuck on the first 6 words they'd said. I was trapped in that 10 seconds of the conversation and could not find my way out. I don't remember what I answered (or how), and don't remember hanging up. I do remember messaging my coach to tell him these thoughts. Somehow I drove home and made it in one piece. 

When I got home, I was determined not to say anything to anyone until after the 16th when we knew more and had a better idead of what was going on. After all, my coach knew, and for now, that was all I needed. I know for sure I can't tell Don - it would send him over the edge with his PTSD and depression. And there's certainly no way I'm telling my kids. They've been through enough already and there's no sense upsetting them now, when it could turn out to be nothing at all. The other reason not to tell Don - is he would immediately say something in front of the kids. I couldn't handle telling any friends because 1 - I didn't want anyone to get upset, worried, or stressed, and 2 - I could not handle any of the social norm sympathy responses of "I'm so sorry - what can I do?" It's just not something I deal with very well, and I was definitely NOT in the mood. But, over the past couple of days I've talked to a very small handful of people about it - the friend who has gone through it before, the teammate who went through something similar, another teammate who has been an absolute rock and by my side through both of our medical ups and downs in the past couple of years, my academy principal so he didn't get blindsided later if this turns into the worst case scenario, two co-teachers who I knew would not respond emotionally but are my go-to people at work, and a hometown high school friend who always knows just what to say and when to say it. I've put certain people into certain places in the support network intentionally, based on what I know I need and how each fits into that system. Some can provide answers because they have been there, some have to know for logistical purposes, and some are just the personality I need to face it matter-of-factly, without emotion or sympathy, and who can get me through the appointment on the 16th without falling apart. Please don't be offended if you weren't one of those people. You may be one who gets the first call or message after the appointment on the 16th or in the future with something else. Please understand I still can't talk about it and really don't want to. I'm begging all of you to avoid commenting on this until after the 16th. I just wanted to fill you in and update you all since I had posted about having the lab work done and not provided a follow-up. I cannot handle texts, messages, calls, or comments right now about it. It is what it is and we'll find out soon enough if it's more. Until then, just know it's there and going on, and be patient with me if I appear to be distant or aloof. It's not you. I just need some space. From everyone. 

For now, I'm continuing to run and working out like crazy to stay distracted. I managed to go 4.3 this morning. Only the last 0.3 of it actually stunk. The rest felt good. I could feel the areas where the nerve pain had been, but it was more of a leg tightness and dull ache than anything else. I was able to hold a decent pace for the whole run, even with some hills. When I started getting tired and feeling pain after 4 miles, I decided to call it and walk the rest of the way home. The walk hurt worse than the run, but once I got home and ate/drank something, I felt better. 

Tomorrow we are taking a family day and going to Dollywood. When we get home I have a volleyball game. Tuesday I'll have run class and swim lessons to keep me busy. Wednesday we're going back to Splash Country, plus I'm doing OCR that morning and have run group that evening. Thursday we have a swim meet. Friday I have a non-run-class run class (day before race means no intense workout), followed by swim lessons. Saturday we have a race in Kingsport that several teammates are going to. I'll have a busy week ahead to keep me distracted. It helps. I'm not sure if I will be updating again this week with all of the craziness of activity, but I will be back to share at the latest after the race on Saturday. 

Thank you all for your continued support and encouragement. It's been awesome. Again, please refrain from commenting on this post or sending messages regarding it. At least for now. Please. Thanks for understanding. 

Doctor Chaos

I am very thankful for doctors who don't hesitate to say "just come in now" or work me in as soon as possible on the same day I call, with no hesitation or questions asked. But, today, when I was told to come in right away for lab work and x-rays, I just wasn't a happy camper. So much for the reprieve.

I got ushered right in as soon as I got to my primary, despite a couple of others in the waiting room. She took a few minutes to run through everything again face-to-face, to make sure we were on the same page and she had all of the info she needed. For the leg pain, her initial thought was shin splints that just weren't responding to the normal recovery methods I use. We talked about the impact of running in the past 6 months and how it's done more good than bad, so we'd just have to find a new way to deal with the pain if it was just shin splints again, but she was confident I'd be fine to run my race Wednesday evening.

Off I went with the nurse for the x-rays, then back to wait a few minutes longer. As soon as she walked in, my doctor had this look of "I'm SO sorry on her face" and said, "Well, I have good news and I have bad news. The good news is your tibia and fibula are solid. Nothing there. The bad news is, you do have two tiny stress fractures. But, they ARE tiny, and they look like they are already healing." I took a deep breath. She sat down. She said, "No race Wednesday evening." I took another deep breath. She looked like she was just waiting on the meltdown. It never came. I handled it fine. I asked how long. She said we'd estimate about 3 weeks. Normally it'd be 6-8, but since they were so small and already looked like they were healing, she thought I'd be good to go in 3. Another deep breath.

Then she said, "Do you have a boot?" I immediately perked up because I saw where she was going with this. Somethings, only runners understand. I didn't have a boot. She asked me if I thought I could get in to the ortho surgeon today, have him look at the x-rays to confirm, and, if she was right, get in the boot. She said, "Then you can go to the race." Note, she did not say I could run the race, but she also said she knew me and knew I'd go anyway, so as long as I went, I should wear the boot. But she also said she could not condone nor encourage me to run in the boot for the race, but, again, she knew me. She also said, I hope he tells you I'm crazy and he doesn't see anything. But, let me know either way.

Before I went, we discussed the other issue. I knew before Tahoe my eating was off. Then, when we got to Tahoe and I stayed nauseous for days, I knew something was up. When I felt sick during the run, I knew something was up. After the run, still knew it. When I got home and spent a week doing nothing more than sleeping, working, surviving runs, and sleeping more, I was certain I knew what was going on. But I kept saying I'd be fine and ignoring it. One of the biggest things I picked up on was that I was likely anemic again. It's something I've dealt with off and on for decades. I recognize it almost immediately. Most of the time I just adjust the diet and it goes away on its own and I'm fine. Well, I knew a week after Tahoe that it had not gone away and was worse. I filled the doctor in on all of this. She enlightened me that between the lack of eating and the anemia, it was highly probable that I ended up with altitude sickness, even though I've NEVER had an issue with it before, in any of my numerous trips above 7000 feet. She explained that if I was already anemic when I went, it would make me even more susceptible to the altitude sickness, which in turn, could also be affecting my legs with the lack of oxygen-rich blood circulating. We talked diet/intake (again) and how important and essential rest was. Then she sent me in for the lab work.

After they took way too many vials of blood, she sent me on my way to the ortho. I called at 10:15. They said to be there by 11:10. That's how fast and awesome they were.

Arrived at ortho with copies of x-rays in my hands. Explained everything to the nurse. She went to get the ortho. He comes in with a new PA. He says hello, turns to the PA and says, "Kristi here has a whole lot of unusual stuff going on and is NOT your typical patient." I didn't know whether to be flattered or feel like a freak show act. But, the doctor is awesome. He really is. So, he explained why things were anything but textbook with me, and the PA look mesmerized. I told the ortho my doc had said he could call her crazy. He said, "Well, if I tell you she's crazy and I don't see anything to stop you, are you going to be able to go run?" I stared at him for a minute, felt hope rising, and said, "well, it hurts." So we talked. He showed me the x-rays. He said, "it's still the same nerve stuff - there is nothing here that shows me that you need to stop doing what you are doing. I want you to continue running. Plus, you eliminated the possibility of the compartmental syndrome we discussed. If you ran a half-marathon with no nerve pain, you're doing something right. Keep going." I asked if I could have it in writing. I knew my coach was going to think, "there's no way" after all of the back-and-forth texting all morning going from "shin splints not responding to the norm" to "oh no - not 1 but 2 stress fractures" to "you are clear to keep running." It just was completely insane.

So, after all of that, I was told I could continue running with the only limitation being my pain. So let's discuss that for a moment. I tried to run this morning. I walked half a block to warm up. Then took 2 strides running - and immediately stopped. The pain was like a 25 on a scale of 1-10. For me, that's pretty significant. I can normally run through most of the nerve pain I experience. Not lately. It's been super high impact. When the doctor said I could run through the pain as long as I could tolerate it, I hesitated, though I wasn't about to let anyone know it. My initial thought was, "but it hurts so much worse now than before" and "am I really getting that soft that I can't just run through it anymore?" I wrestled most of the afternoon with it. The ortho did also point out that there really was no point whatsoever in me trying to push through the pain to do a 5K that wasn't on my priority list just to say I did it, and said to think about it before I attempted it Wednesday night. He also admonished me to follow my coach's instructions - even when I felt like he was holding me back and I wanted to do more. It's that slow progressive overload (yes - I used the words) that is working and that I need. When I try to go beyond that and do too much too soon - my nerves overreact. When we gradually train them to take on a higher impact in speed or distance or duration - it works. What stinks about that is that it means progression moves forward way too slow in my mind. I want to do it and do it NOW - not work towards it for months. But - I get it and I am (for the most part) complying with it.

My girls asked to go walk this evening. There was no way I was saying no. They've been in NYC for almost 3 weeks and it's their first evening home. We grabbed their scooters and set off towards their favorite path. As I was walking it dawned on me that I really needed to get a grasp of where I was in terms of pain level and ability - BEFORE I get to Wednesday's race. I know me - if I just show up cold turkey and run, I'm going to ignore all of the pain and regret it later, or end up injured again. I need to know how far I can push it and when/where I need to limit myself. The best way for me to do that is tomorrow during the group run class - but I can already hear my coach's reaction to that now. Especially since he already told us he didn't want to see any of us there doing a hard workout with the race the next evening. I  may need to think about how to approach this one.

The funny thing about today is how stinking CALM I was through the whole ordeal. I don't know how, but getting the news I was out for 3 weeks, and then an hour later being cleared to run that day did nothing to me emotionally. I just accepted it all as it came. Totally out of the norm. In fact, my doctor was asking if I was okay - BECAUSE I was so calm. Maybe I've learned to just deal with things as they come? Or maybe I already knew the worst was inevitable and expected things to be far worse than what they were saying? Who knows. But, I'm just really glad this day is over and I'm allowed to run. At least by the doctor. I'm really hoping it doesn't make my coach over cautious and hesitant to let me loose again.

Too Perfect to Last?

Remember how excited I was to be turned loose and not have to go to any doctor appointments or tests for a whole year?

Yeah. Well, we knew that was too good to be true.

Heading in for both complete labs and x-rays this morning. This, after a couple of weeks of dealing with some pain in my leg that we went back and forth on about whether it was shin splints, a stress fracture, or just the nerve stuff doing what it does, and after 2 1/2 weeks of not feeling well, despite my best efforts to ignore it. My frustration level, with both running and my body's lack of cooperation, is at an all-time high. Right when things start going really well and I'm scheduled for a ton of races... I should have known better.

I know I shouldn't complain. I had a solid month of freedom. But, still, I'm left feeling defeated and angry. Normally, I'd go for a run and work those feelings out, but since that's not an option...

Six Months

Six months ago today I was released to begin running and working out again. I just went back to those first few journal entries since then and read them again. It's amazing how far I've come since December 28th.

There are a few things that have remained constant during these 6 months.

The first, obviously, is the determination. There were bad days in the beginning, and there are still bad days now. There were good days in the beginning, and there are still good days now. No matter what kind of day it is right now, they are all better than what they were prior to December 28th. On the tough days, I still find myself pushing through with more determination than ever. On the good days, I find myself fighting to push forward faster. Which brings me to another constant during these 6 months... my coach.

When I was little, one of my coach's used to say "she's a coach's dream" all the time when describing me to other coaches. I'm 99.9% certain that my current coach would not agree with that statement. Let me explain. My coach is, by far, the absolute best, and I could not ask for a better coach for me - in terms of running & coaching knowledge, personality, patience, or flexibility. He gets me. That, in and of itself, is HUGE. He has the patience of a saint. I have rarely seen him without a huge smile on his face, and have never seen him get frustrated, despite the number of times that I have pushed back or challenged something. However, something I have found in these 6 months that I did not have as a child athlete, is my voice. I was always a compliant athlete, and never a complainer. A workout was posted - I did it - no questions asked. An order was given - I followed it - no questions asked. That's why I always got the coach's award or a thousand compliments about my coachability. I just did what I was told and never gave even the slightest attitude about it. Well... I have learned to ask questions. I have also learned to ask for more and push boundaries. I know that sounds horrible - but in this case, it's actually been a good thing. Thankfully, my coach understands me enough to know that when I'm pushing back and asking why, it's not because I don't trust him to know what's best or respect him as a coach, it's because I truly want to know WHY and HOW. Why aren't you letting me go faster on this when I know I can? How is this supposed to help me? I'm not questioning his authority at all, simply trying to figure out what on earth he's doing half the time. I've become impatient at times - wanting to do more sooner than I really should. Most of the time, once I've asked the why and how (and probably whined a little bit), I end up following his directive - because he knows his stuff and I truly believe he has my success and my health at the forefront of every training decision he's ever made. That is an absolute gift to be able to say that. I have never trusted someone so much. He could sign me up for a full marathon, and after balking and asking him if he has truly lost his mind, I'd go do it - because I'd know if he'd decided I was ready and prepared to do it - I was. In 6 months time we went from "I can't even run an entire mile" to "I just ran a half-marathon with either a PR or 2nd best time on every single distance but the mile." That doesn't just happen. Yes, I worked my butt off. I put in the miles. I followed the plan as best as I could. But I also had this amazing coach giving me guidance and even holding me back at times. Through every awesome workout, horrible run, week off for injury, PR race and everything in between - he's been a constant. I never imagined when I started running 14 years ago that I'd have a run coach. I also never imagined accomplishing what I'm accomplishing, especially after the past 7 1/2 years of medical chaos. Now, I can't imagine going forward a single month without a run coach, especially this one. It has not been perfect. There have been some tears and frustrations - as with any relationship. However, we have a strong level of communication between us, and our personalities are complimentary enough, which together allows us to stay on the same page, even when we disagree, and keep us moving forward.

One of the other constants, since about mid-March, has been this crazy-fun, odd assortment of runners that form our run group. Somehow, we are so very different that we blend perfectly together and have a blast. I'd never wanted to be a part of a run group before, and I now I never want to lose this group. If something happens and I can't make a Wednesday night group run, it's miserable. Not only do I enjoy suffering through runs & workouts with them, I love that social interaction with people who understand why I'm pushing myself so hard through painful runs & workouts and encourage me to keep pushing. It's been an absolute blessing to become a part of this team.

With all of the constants have come many changes. My coach looked at me the other day and said, "You are a totally different person today than the one I met 6 months ago." It's true. It's too complicated to go into detail, but I'm just not the same person I was. On the other hand, my coach also entered the picture in one of the worst possible times in my life - but, as someone reminded me, that was for a reason and God's perfect timing. I'm just glad he isn't judgmental and didn't run for the hills in those first two months.

One of the most difficult changes that has happened in the past 6 months is the gradual shift away from CareRunners and experiencing changes in friendships. To everything there is a season - and we had a great 10 year stretch of CareRunners. I loved it. I really did. But, I'm happy to be moving on from it. Kara and "her team" will always be a part of me. Being in Tahoe and getting to see Jared and his parents reminded me that no matter where we live or how far we travel, no matter how much time elapses between visits, and no matter how often or how little we keep in touch, we're still family and we will always be able to pick up just where we left off. We had some great conversations in Tahoe and we made some great memories. But we also found ourselves turning a page in the book to start a new chapter - and we are all at peace with that. In October, I will run my last race as a part of the CareRunners team, and then the team itself will become a memory. All of us have moved on to local run groups/clubs or have moved on from running altogether. It's time to let it go. But change is hard.



I've been procrastinating and debating whether to share this part or not. It's not something I've talked about with anyone, and it's both really deep and extremely heart-wrenching. But it's something that has been weighing on me and tugging at me for a couple of weeks.

18.

18 is the number of responders I knew personally who have taken their own lives since September 11, 2001. 3 were in the past month alone. At least 4 of these never made the news. Just an obituary to say they died, but no mention of how.

18 people who gave their all at Ground Zero and spent countless hours serving this country in a time when most people wanted to run away, turn off the news so they didn't have to keep seeing the horrible images, and ignore what was going on in lower Manhattan. 18 people who had families who loved them. Moms, Dads, brothers, sisters, sons and daughters were all left behind to grieve and wonder what they could have done to stop it and how they could have missed it. 18 people who had teammates and friends who had to bury yet another coworker. 18 people added to the list of names of those who died because of 9/11. Yes, even though they did not die from the cancers or the other debilitating diseases affecting all of us, 9/11 is what took them from us.

You see, we have all of these 9/11 health programs in place. But they are FAILING US. We have a Victim's Compensation Fund in place. But it is FAILING US. We have a few support groups around. But they are FAILING US. Only certain cancers and disorders are covered by the WTC Health Programs. The rest of us who have things that aren't covered are having to pay out-of-pocket for those medical expenses, which pile up quickly. One of my teammates currently owes $836,000 in medical bills, because "that's not one of the cancers we cover yet at WTC Health" and her personal insurance views it as a pre-existing condition. When you are a mom with 3 kids, are too sick to work a full time job, and your husband is overseas serving in the military, and you are told you are going to lose your house and car because you can't pay medical bills from a condition you got after serving your country as a first responder at Ground Zero - it's a pretty desperate feeling. When you are told to apply for the VCF because you are eligible and could get financial help from it to pay off those medical bills, and then you apply and several months later get a letter that says they are sorry, but you didn't file the paperwork in a timely enough fashion, so your claim is denied - it's beyond frustrating. When you are told your PTSD is so severe you should be hospitalized, but you'll have to use your own insurance and won't get a leave of absence from work, so you'll miss your paycheck too - you refuse the hospitalization and try to push through self-medicating and just dealing with the symptoms. Each of the 18 people who took their own life had a simliar story.

Suicide is never a solution I could entertain. I had a close friend I loved dearly take his own life my freshman year of high school. I saw the turmoil and pain in caused in the lives of those left behind to grieve. I could never inflict that kind of suffering on another human, especially not my own children. It's not something I could or would ever consider. However, I completely get why those 18 took that route. Just over a week ago, I started having some of the same symptoms and seeing some of the same signs - and knew there was a possibility I was getting sick again. I went into a complete state of denial. I refused to believe it. Refused to accept it. Absolutely refused to tell anyone or say anything. My coach picked up on a couple of things, and my doctor knew enough about those to put it on her radar - but I've downplayed it as much as I can. Why? I simply could not bear the thought of going through another 7 years of hell. The treatments, the doctor visits, the constant labwork, the constant monitoring and tests, the pain, the misery - I just CANNOT face that again. It's in that exact moment of realization that I understood why those 18 did what they did. Again, it's not a choice I could or would ever make, but I do get why they made that choice. I know I don't really have a choice. I'd have to face it and deal with it, and find a way to get through it and just hope and pray it wasn't as bad this time. I'd have to. Somehow. If not for myself, then for the four little faces that look up at me and call me Mom. Thankfully, now, I realize I have more of a support network surrounding me than I've ever had, and I wouldn't have to face this round of things on my own. Accepting that and utilizing that may be a bit hard - just because I'm not used to it. But, I would get through whatever hit me. It's just what I do. But what about the others? What about my fellow responders who don't have that support network and don't think they have reasons to keep fighting?

Our 9/11 responders need HELP. Physically with medical issues that are not getting treated. Mentally with the PTSD that is not getting treated effectively. Financially with the VCF funds that are not getting renewed by Congress and are not being awarded to those who justly deserve them. Our 9/11 responders are dying at a very rapid rate - many by the cancers and diseases wreaking havoc on our bodies, and others by their own hand because they cannot face another day of dealing with it - because they are given not even a glimmer of hope that things will get better, and because they feel alone, forgotten and uncared for. How many more have to die before someone realizes the system is failing us? How many more have to lose everything before someone notices them? With every death notification that I receive from our 9/11 family - sometimes 4-5 a week - I'm left wondering what more I can possibly do to stop this. When I heard of the latest suicide I just sat and cried. How can we stop this before one more responder takes their own life? It's completely and totally overwhelming and devastating. It has knocked my feet out from under me and ripped my heart to shreds. But, what can I do besides sit and wait for the next notification?

The only thing I can do right now is keep fighting my own fight, keep running as long as I can, and keep blogging about it, hoping that it inspires someone else to keep fighting and keep pushing forward too. I can keep posting and sharing about the responders and hoping that the right person sees it and is spurred into action. I can keep sharing about people like John Feal and his team who are fighting for all of us in DC. And, on a more personal level, I can keep letting my team know that I'm here and they aren't alone. It feels like I'm doing nothing that has an impact most of the time, but if my words and actions can keep just one responder from giving up, I'm going to keep doing what I'm doing for as long as I can.