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.
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