Wow - it's hard to believe a month ago today I was on a plane heading to the Tahoe marathon weekend. Time flies.
I've been receiving a lot of emails and messages asking how my race recovery went and about our 5Ks we had scheduled following Tahoe. Someone even asked if I was ever going to blog again now that Tahoe was over. Well - yes - I will still be blogging. I have another big race coming up in April, and once we get past New Year's, you'll probably get tired of all of the posts quickly. There's plenty more blogs coming. As far as follow-up from Tahoe, since we got home, things have been difficult and I've not been doing well. Quite honestly, I have not been in the right frame of mind to blog or share. I'm sorry for the absence, but trust me, it was for the best.
First of all, thank you again to every single one of you who followed my journey to and through Tahoe weekend. That was by far one of the most difficult race weekends I've endured from both medical and emotional standpoints. On top of all of my continued health issues, which were made a lot worse during the race, we had to work with a very disorganized, almost chaotic race organization, including some very difficult people, and were dealing with jet lag, colder-than-expected weather, last-minute changes, and some heavy emotional stuff. It was a lot for one long weekend. I am still glad I did it, thankful I was able to go, extremely grateful for those special moments with special people in the midst of all of the chaos, and relieved I was able to finish, though it was far from the race I'd hoped for.
I've heard many comments about how I shouldn't be beating myself up over my Tahoe race. It's not so much that I was beating myself up. I just had some high expectations and hopes for myself during the race, and left the finish line knowing that I was capable of far more than I accomplished during that half-marathon. That's never the thought any runner wants at any finish line, no matter the circumstances. I was (and am) so frustrated by my body's lack of cooperation with the treatment regimens and procedures I've gone through. I'm sick and tired of being sick and tired. I feel like every time I'm allowed to push forward and try to get back on solid ground, I get pushed off the cliff and told to start climbing again. I had been doing so well going into and through last summer, then had the ankle injury that set me back. The ankle was finally healed enough to run, and then I got knocked back down with the medical issues. It's a never-ending cycle. It just gets physically and emotionally exhausting at times. I know there are people out there who are suffering with far more debilitating conditions than I have, and I don't want to complain. I'm just trying to help you understand where I'm coming from with my disappointment in my race last month and why it's more than just me being hard on myself about the half-marathon.
Which leads me to the next common thread of questioning I've been getting... Everyone who isn't already "in the know" keeps asking what's going on with me and what I "have." It's not that I have something horrible or bad, or even something that I need to be secretive or discreet about. It's just that it is a highly emotional thing for me and something that I don't like to talk about. So -here goes. The official doctor's diagnosis is that I have an "unspecified autoimmune neurological condition caused by exposure to an unknown neurotoxin during response time spent at Ground Zero." Basically - my body goes through an autoimmune response to almost everything - and it affects my nervous system. I can eat the healthiest diet on the planet, the worst junk food possible, or anything in between, and no matter what, my body will swell and react as if it's a toxin. I can exercise for hours or for a quick 20 minutes, and either way, my body will swell and act as if I've come in contact with a toxin. I can sleep on sheets that were washed in a different detergent or dried with a different softener than I normally use, and my body will break out in huge hives and I will start wheezing and having difficulty breathing - because my body thinks it's a toxin. I can get overly stressed about something - and my body reacts as if it's come in contact with a toxin. I also have been diagnosed for years with complicated brainstem migraines. When I was first diagnosed, there was swelling around my brainstem. They did not know why. They couldn't figure it out, no matter how many neuro studies they did. They didn't know how to treat it. They did explain that with the complicated migraines, the symptoms may not be just a headache. I can have nausea, dizziness, numbness, pain, vomiting, or even lose consciousness. It can get bad. Or, it can be "just a migraine headache." The scary thought was that if one hit while I was running and caused unconsciousness, I could die. That is a huge reason why they stopped my half-marathon streak and said no more. They were reluctant to let me do 5Ks and 10Ks, but almost every time I got a migraine of any type when running, it began around mile 8 or 9. I could run up to 7 miles with no problems at all, during or afterward. So, they hesitantly agreed to races up to a distance of 7 miles. They also gave me migraine medication to use as needed when I felt one coming on - but took me off of every other medication I'd ever been given. If I got sick with anything - no antibiotics. No ibuprofen. No Tylenol. Nothing. I had scarring on my liver, kidneys and bladder - also assumed to be from exposure to the unknown neurotoxins. I had tumors popping up all over the inside of my body. I had one massive tumor that grew from inside my uterus and began protruding out of the outer wall of the uterus - which is why they did the partial hysterectomy a couple of years ago. I had a tiny start of another tumor in one of my ovaries, but they chose not to remove it at the time and to simply keep monitoring it. They thought the hormone imbalance may cause worse problems, and just the disruption caused during the surgery to remove the uterus sent my body into an immune response that lasted over a year. The positive note was that there were no cancer cells detected in the massive tumor they removed - so no chemo or radiation or any other intensive cancer treatments. I also have many small polyps/tumors throughout the lining of my intestines, which they have been keeping an eye on, but not removing at this time, simply because there are so many and they don't believe they are cancerous. They basically swell anytime I eat or drink anything - even water or organic fruits/veggies. At times I look like I am 10 months pregnant with twins or more. It's massive swelling. Not just simple bloating from old age digestive stuff. You wouldn't believe the number of joking remarks I have gotten when sharing this. Trust me - it's not funny. I have a lot of limitations with what I can eat without problems. Sometimes the polyps and tumors get so swollen that no substance can travel through my intestines. There is concern that on one of these occasions there could be tearing of the intestine lining and possible herniation. In addition to this swelling, they now believe the swelling around my brainstem found during all of the neuro studies is due to my body's immune response to anything it deems a toxin, including food, contact with unfamiliar substances, drink, stress, exercise, etc. The best news the doctors have given me is that nothing so far has been cancerous, and nothing I have is going to kill me, at least not anytime soon. It's tough to live with sometimes, but at least I am still here and can still push myself within some limits to do things I "shouldn't be able to do" with these conditions.
So, knowing all of that, when I asked if I could run the half-marathon in October, you can imagine the doctors' responses. Thankfully, my doctors have gotten to know me extremely well and understand my line of thinking. They knew this was important to me and why. They knew where my heart was, but also how much I knew and understood about my condition. They knew I knew when to say when. The absolute hardest moment for me during the half-marathon was when I left the cabin, felt the pain and knew that I was not going to be able to finish running. I knew there was a very real possibility that I was going to have to stop the race completely and not finish. What I didn't realize at the time, but have learned in the past two weeks, is that the back pain I was feeling was not from the nervous system response or from any type or skeletal/muscular issue. I basically had caused further damage to my kidneys during the run - because the pace I had kept during the first 5K along with the pounding caused by the running downhill and the scarring already present, along with the migraine and ill-feelings I'd had the day before and some intestinal/urinary issues, had triggered an immune response and caused my kidneys to stop functioning normally at the time. I had basically sent my kidneys into shock, resulting in symptoms that mimicked the nerve pain I had suffered with before. It took a while to figure out, but the combination of symptoms I experienced afterward and consultation with a NYC physician I'd seen when living there brought about the realization that we had a kidney problem going on. The good news is that my kidneys are responding to the very basic of treatments right now and that the more intense treatments are not in my near future. Thankfully this was caught and properly diagnosed within a reasonable time. However, as you can imagine, they have not cleared me to run again and I have already missed two of my planned races. Right now, the plan is to let me walk the 5K on Thanksgiving morning. They aren't ready to say I can run it, but they haven't completely shut me down yet. One of the doctors I have a huge amount of respect for and who is also a runner had a very frank conversation with me last week. He said what I didn't want to hear - but he wanted me to start thinking seriously about it now, before he had to make the call later. Tahoe may very well have been my last race ever. Had I known that at the time, I may not have stopped running at mile 8 when I did, and could have risked a lot worse damage and results. Had I known that then, I also may not have run that race at all, and would have held off to be able to run in Epic's half in June - just once - before never getting to run again. Now, I may never get that chance, and it hurts. They haven't completely ended my running life yet, but I am being asked to hold off until spring and get through this winter season of therapy and recuperation. They plan to make another decision in late February or early March. As of right now, they have not completely axed my Anthem 10K in April back home. It may not be the all-out run I'd hoped for, but what's keeping me going right now is knowing that it may still be possible for me to at least participate in the race. It all depends on how my therapy and treatments go over the next 3 months. I get asked weekly if I'm going to Tahoe in June for the Rock Tahoe. I can't answer that. I don't know. I want to. More than anything. But right now, I have to focus on one week at a time and getting better. Hopefully you all understand that better now. We won't have our team house to use and hotels are outrageously expensive, so there's a lot of logistics to figure out if I do end up going, but for right now, if worse comes to worse and I'm not allowed to run, I'm hoping to at least get out there to support my team as they run. We'll just have to wait and see if that's a go. And no - sorry team - Jason hasn't given me a race promo code yet - but I promise when and if he does you'll be the first to know. He's been a bit busy lately and I've been a bit too preoccupied to ask. Stay tuned.
Obviously, there is a lot of emotion surrounding this, and it's not just because of running. Almost daily I get a notification of people dying from their 9/11 illnesses. Last week, another friend I worked side-by-side with at Ground Zero died. I see people who I was literally hand-in-hand and shoulder-to-shoulder with dropping like flies. Same with Don - it's happening to people he was good friends with and worked with for years. It seems to be happening faster and faster, more and more frequently. It's downright terrifying. Facing 9/11 death is a daily thing in our home. Our greatest fear is that 9/11 ends up taking both of us - and leaving our children orphans. Every death of a friend and coworker is a constant reminder that this is something we can't control and that it is completely in God's hands. We know it will happen - we just don't know when. Of course, any and all of us can say that - because none of us knows what tomorrow will bring or how many days we have left here. Most people go through life without a thought about their last day. Right now, though, for us it's a matter of living every day as if it is our last with our kids and each other, just because we are haunted by the images of those who surrounded us as we worked in the pit and who are no longer here. I hold frantically onto every time the doctors tell me that what I have won't kill me anytime soon. I push myself to do as much as I can to stay as healthy as I can - while balancing that with how much is too much and what's going to make me worse. I fight every single day to be here for as long as I can for my kids. I keep running and keep exercising and keep moving - because I'm afraid if I don't - 9/11 is going to catch me like it has caught far too many friends. Running has been my way to escape 9/11. It's given me time alone (which I never have) to think, process, and reflect. It's been an outlet for frustrations, hurts, anger, tears, and grief. Having running taken away from me would cause more than just a disappointment about not being able to race with friends again. It would be taking away the one effective therapy I've had when coping with everything that is 9/11. But - if that is what is going to keep me here for more years with my children - then take it. I will give it up. Anything it takes to just not face my children and imagine them parentless. Speaking of the kids - we don't tell them much. They obviously know about and live with Don's PTSD - which is a nightmare for all of us at times. But they don't know about the skin cancer or chronic illnesses that we face - and we want to keep it that way for now. They've seen and noticed mom hasn't been doing so great since Tahoe, but they don't know the details. We've recently made their teachers aware of some recent changes and will continue to update the "need to know" people as needed, but for the most part, we are trying our best to keep our kids blissfully unaware of how serious this could be. They have enough stress dealing with what they do know about.
Please know that I didn't decide to share this to draw sympathy or an emotional response. I'm just really tired of having to share it individually time after time. I'm tired of the questions and tired of the constant speculation. Here it is in black and white. If there's something I didn't answer, I'm sorry. This is really as much as I really want friends/family to know at this point - and actually a lot more than I ever thought I would share about it. I don't like to talk about it and will probably brush you off if you ask for more details. Sorry - I'm not trying to be rude or mean - but I am trying desperately to hold it together and not dwell on things. I have to keep pushing forward and not thinking about it or talking about it constantly. Please try to understand. Want to help? Come with me to the gym when I'm doing my therapy, or come and go for a walk. Be there on the weekends Don is in NY and I'm at home alone trying to care for 4 kids and a house on very little energy and a lot of pain. Pray. Call or email and talk about everyday things. Share funny stories. Tell me what your kids are up to. But - don't keep bombarding me with a million questions. Please.
So - what's next? Well - we'll see how I feel on Thanksgiving morning and how much the doctors are willing to let me attempt. I am pretty confident the answer will be walk only, if even that. So no high hopes from anyone. Then - there's a big rest from any type of race or running event until late February or early March when we see how the 3 months of therapy and treatments go.
As we head into the holiday season, please keep the families and friends of those we've lost to 9/11 illness in your prayers. Continue to pray for the tens of thousands of responders still living with 9/11 illness. Thank you.
