Friday, March 25, 2016

Cancer Part 1 - Giving up Control

I had thought about blogging again for a little while now, as a form of therapy, really, but every time I'd start typing, I couldn't continue. I'd type a few sentences and need to run away from my thoughts again.  It was too hard to think about things. Thoughts about my health have consumed me all day and night, for months, and carrying that weight on my shoulders has been beyond wearing.  Many times I wanted to get on Facebook and tell the world about the hell I was living in - out of the need to be heard, wanting (& needing) support, to find my friends again and scream at them to "help me dangit!" Then I got to a point where I held everything internally.  I got depressed. I was anti-social. Some days I was gripped with fear so strong I literally couldn't get myself out of bed in the morning.  There were nights I was so exhausted from worrying I would fall asleep on the couch at 6pm.  My body was drained. At times I wanted to scream "people, feel sorry for me! I have cancer! Freaking cancer! Where is everybody??" Other times I just wanted to crawl into a hole and hide. 

Something I've realized more than ever the past few months is that I need people.  I get my energy from people. I'm an extrovert.  People lift me up.  Having support helps, immensely.  For a while I tried to go through my recent challenges mostly alone, other than a few close family members.  I felt lonely, but was stuck in a place where I had zero energy to be proactive enough to reach out and connect with people who I needed, like my good friends.  That said, the past month or two I have done a better job with that.  I've reached out to others more, and have found a lot of strength through relationships lately.  Getting back to work full time since mid December has helped me too. I need my job and the people I connect with through my job.  Not just to pay the bills (... and my 3 inch tall stack of recent medical bills), but to help me maintain balance as well, and to get my mind off of myself.
         I know I am weak, but I remind myself frequently:  I am weak but He is strong.   Yes, it sounds cliche...without my faith I'd have nothing. But it's true. Without faith that everything happens for a reason, you literally have nothing to hold onto when $h#t hits the fan.  The past few months have tested my faith a million times more than I've been tested my entire life.  When you are fearing death, it's then when you find if your faith is truly real. It's then when you find out if, and how, it exists and is a part of your life.

November 8th marks the start a trial I faced that was 100x harder than anything I've gone through ever before - and I'm still in that trial.  At the end of last year, my real estate career was going better than ever. I was working my butt off, making good money, and growing my business. That said, my life was crazy out of balance.  My job was my life, my marriage was suffering, and I was not putting my family first. I had almost stopped exercising entirely, was eating horribly (Chik-fil-a literally 4+ times a week), and had crazy high stress levels, non-stop.   My life was out of balance and I was hit with a wake up call - a big one.  It was a Friday night and Amy (my wife) and I were eating delivery pizza on the couch for dinner.  My 2 girls were asleep, and we were relaxing before heading to bed.  When I went to the bathroom before going to sleep, I noticed my urine was a bit darker than usual.  (Ok, I'm about to get medical here, so if human urine grosses you out, then skip down a paragraph down or two).  I had a couple of Coronas with my pizza, so I didn’t think much of it, and assumed the color was just from the beer.  I woke up around 3 am having to use the restroom, very badly.  I was about half awake only, but I remember going...and going and going and going - like my bladder was enormous.  My urine was dark brown. This time more noticeable.  Being half-away, I went back to sleep in a daze. When I woke up in the morning, I had a vague memory of the incident, and I told Amy that I thought I had peed blood last night. I went to the bathroom in the morning, and my urine color was normal.  Good, I thought, it was my imagination. I put it in the back of my head and went on with my morning.  I scheduled some house showings for a new potential client, and went to the restroom before heading off to work.  That time, I noticed a tiny blood clot in the toilet.  I knew something wasn't right.  I texted my nurse practitioner sister Kristyn (who has been incredible to me and I'd be nowhere without her help the past few months), and she got me into see the doctor at her clinic that same day.   I showed one house in Littleton to my clients, and headed straight to the doctor after that, with plans to meet up with my clients later in the afternoon to show them a few more homes.
         For a few months prior, I had felt an odd tightness in my lower abdomen while lying in bed - like my lower abs just couldn’t relax; a symptom I still don't know what was all about. The Dr. didn't think it was bladder related, and it's since gone away.  That morning the Dr. ordered a chest x-ray on site to look for a kidney stone, and tested my urine for signs on infection - both were normal.   A kidney stone would be the most common cause of blood in the urine, but I had no back pain at all, and nothing on the x-ray.  He told me I likely have one of 3 possible things going on: a kidney stone, an infection, or bladder CANCER.  What?! Of course there could be a million other things that blood in urine can mean, right?  I've been a runner my whole life, and I've been around hard core runners quite often...and I know blood in the urine isn't unheard of, especially after a crazy race or workout.  I thought certainly there's got to  be other causes besides the three the doctor mentioned.  He told me to see a urologist as soon as I could early in the week.  When I was walking out of the clinic, I found him in the hallway and said "Dr C, you just said I could have 1 of 3 things, right?  And it sounded like you basically ruled out 2 of the 3, right?  You said I have no signs of a kidney stone, nor an infection...so what you're saying is that I'm left with possibly having bladder cancer?!" He said no need to worry too much, but he wanted me to take things seriously.   I could barely walk out of the clinic as I was shaking with fear.  Literally, my legs were trembling. I almost couldn't make it to my car.  I was shaking violently.  When I got in the car, I called Amy in a panic and told her everything that had happened.  I called my pastor Jeff as well. I needed prayer from everywhere possible, and I knew Jeff was a man of prayer.

 I can’t explain the fear I had on that Saturday morning - a fear I'd never felt before, but today a fear that's become commonplace. Fear of the worst. Fear of a deadly disease.  Fear that my girls could grow up without a dad.  Fear of the unknown.  Fear of the one thing I told myself I could never handle in life... a serious disease.  Maybe God is giving me the very thing I fear(ed) the most, so that my faith was tested? Who knows. 

Fast forward 2 days later to Monday morning, November 9th.  I found myself at an imaging center for a pelvis and abdominal CT scan (thanks to my sister Kristyn who ordered one for me ASAP).  She also got me in with a urologist a few hours after my scan that same morning.   My scan came back with a few minor abnormalities, but showed no tumor in the bladder.   Luckily I only had to wait about 15 minutes after the scan to find out the results. In the waiting room, I sat next to Amy. My skin was yellow, cold, and my body shaking with fear and nervousness.  When I got the call from my sister with the results, I was relieved beyond belief. It was good news, after a traumatizing weekend of what felt like hell.   After the scan, I decided to keep my appointment with the urologist as I still didn't have an explanation for the blood in my urine.   When I got there, the Dr. took a look at my CT scan report, a look at me, and told me to calm the hell down!  The next 10 minutes consisted of him saying a bunch of sarcastic remarks, telling me I'm paranoid, still worried for no reason, and trying to convince me to relax.  He assured me I was way too young to have bladder cancer at 31, and there was absolutely no way it was cancer.  Bladder cancer is a disease of the elderly, he said. The average age of diagnoses is 78 years old, and most people who get it have smoked much of their lives.  After the chat, he wrote me a prescription for 2 meds, said I likely have a prostate infection, and said I could make my way back to the lobby.   He knew I was a healthy, fit (or should I say way too out of shape, formerly-fit) ex-triathlete.  There was no way in his mind cancer was a possibility.  Now, I knew I would not be at peace simply walking out the door of the exam room - I felt it.  I wanted certainty that nothing was seriously wrong with me. 

Now, I never planned to share this on a blog, much less to many people other than a few people close to me, but it's a pretty important piece of my cancer story to be honest. I had an experience that has strengthened my faith in God.  It's something I can't ignore and I can't act like didn't happen, even if I wanted to. Heck, and even if it's just coincidence - though I doubt it is. It's something that has definitely made me think outside the box, and outside my comfort level, really.  It's one of those stories that gives you chills. It's a story that if it happened to you, you'd have to share it too, because you experienced God like never before, and because of that, God deserves the glory.
While in the exam room at the urologists' office after my CT scan, I had a voice in the back of my head telling me to be persistent, and to find answers.  I had a voice telling me to look further into things, just to be thorough.  A crazy string of events happened leading up to that Dr's visit that made me insist that the doctor stick a scope inside my bladder - and I'll just say it, I think it was a message from God.  I've never experienced anything like it before, and wasn't even sure if I believed in prophecy before this, but what happened was way too ironic (and specific) to be chance.  It goes back to one month before Nov. 12th (the date of my tumor surgery), I got a random text from a guy I went to college with.  He was an acquaintance, not even really a friend of mine in college, and I didn't even know him well.  I didn't hang out with him in college either, and I hadn't talked to him other than maybe 1 Facebook message in the past 9 years.
I was in the car at a listing of mine in Littleton, and I got the most random text I've ever received. "Hey Ryan, this is Daniel (I'll just call him). Do you have any reference of a green snake?"  A green what?  It was the most random text I've ever gotten.  I asked him to explain what he meant, and he asked if I had any reference of a green snake in my life recently; like had I come across one, seen one, had a dream about one, or anything like that.  I said no, no green snakes that I can think of. I sat there thinking long and hard. The only thing I could think of was my daughter Riley very occasionally talking about snakes when we would find them in the yard in the summer, and so I told him that.  He didn't text anything back to me right away. About an hour later, of course I had to ask him why he asked such a random question.   He went on to tell me about a dream he had the night before that involved me, a green snake, myself responding to the green snake, and feeling like he was supposed to share the dream with me.  He said it was the gnarliest dream he's ever had, and it literally shook him awake.  It was extreme, and powerful.  He said he thought the snake referenced something in my life that appeared or seemed safe, like the snake in the dream, but actually wasn't. Of course in the dream, the snake was Satan, and he was trying to lure me into something.  In the dream he was friendly, and seemed safe...but in life, of course he is not.  He explained the details of the dream a bit further, which I won't go into, but he also shared a bit about a few other things that happened in his life lately, prophetic things...after never experiencing anything like this in his 30+ years until recently.  He didn't really know what to think about everything, as he was new to these experiences, but he felt he was supposed to share it with me. 
  He went on and told me after he shared the dream with his wife, all she heard relating to the dream was the word "disease."  I guess you would say it was her interpretation of the dream, but there was no clarify what the word disease meant.  I responded with, "I sure hope that doesn't mean I'll get a disease; that's my biggest fear in life."  He told me he thought maybe it meant there was something in my life I needed to get rid of, or something that seemed safe or ok but was really damaging, and to be aware of things that could appear safe but maybe aren't. Again, he's not God, and he didn't know the full meaning of the dream. He just felt he was supposed to share it with me - whether or not it meant anything or not. It was too powerful of a dream not to share, he said.  He told me to be aware of any green snakes too, and to especially pay attention if Riley mentions snakes or green snakes.  I thought it was somewhat crazy, and extremely random, and so I put it in the back of my head, for a month and went on with my life... until a month later on the morning of Nov. 12th.   Amy and I were getting ready to go to my CT scan. It was snowing outside, and there was about a foot of snow in the back yard. My 2 year old daughter Riley opened the door to the back yard to look outside and she said, "daddy, there's some snakes over there", pointing into the far part of the yard.  I said, "oh really?" What color are the snakes, Riley?  She said "green. " Weird. Green snakes?  I closed the door, pulled her inside, and told her it was too cold to play outside that morning since it was snowing, and we needed to shut the door. Clearly there were no green snakes in the yard. There was a foot of snow on the grass, and it was still snowing.  Riley then said she wanted to play with her sticker books, and she pulled a few sticker books out of her toy cubby. She opened up one of the pages in the first book she grabbed...and the first thing she pulled out... was a sticker of a green snake.  True story.  I chuckled to myself.  Wow, the irony.  Here she is, talking about green snakes.  All this happened a few hours before I was diagnosed with cancer, my "disease."

Back to the doctor's office to finish my story about that...
 So, after the Dr. told me I was crazy, had no need to worry, etc, I kept talking with him asking if we could take the next diagnostic step just to be sure I had no cancer, which I knew was a bladder scope.   I wanted a more thorough exam and certain answer.   He didn't even feel my abdomen or anything, after all. He just saw I was a healthy 31 year old and said I was crazy to be scared.  He explained that people who smoke get bladder cancer, and the average age of those diagnosed is 78.  It's not possible, he said.  After about 10 more minutes which consisted of me begging him to stick a scope up my you know what (odd request to beg for a cystoscopy, I know!), he told me that I could come back in a month if I still had any symptoms, and then he could scope me.  The Dr. was sarcastic - that was his tone the whole visit, until the end.  I continued to plead my case. I started telling him he needed to or I wouldn't sleep at night.  I told him I was a worrier. I BEGGED HIM.  Way back in the back of my head, I had a voice reminding me of Riley talking about green snakes that morning, a wild dream someone had about me a month before, and how I was supposed to pay attention to things in my life that appeared safe, but maybe were not.    After a few more minutes of convincing, he finally agreed to check if a cysto scope was available.  I waited in the exam room for about 20 more minutes until a nurse wheeled in a big scope machine, told me to unzip my pants, injected my you know what with some gel, and literally stuck a big clamp on my man part.  Well, I didn't expect that, but I guess it's what I asked for, right?   I saw the giant scope probe soaking in lime-green formaldehyde.  She said “we need it to soak for 15 minutes more since it was just inside of someone else before we stick it in you.” Such comforting words! Hmmm.. I guess I'll try not to think about that one, after all I'm somewhat a germ-a-phobe.
The Dr. came back in the exam room, and asked where Amy had gone. I told him she had went back to the lobby because she thought it would be awkward to watch someone shove a giant scope up me.  Apparently he thought it would be educational for her to watch, and he was still in his sarcastic mood, so he got her from the lobby and brought her back with us in the exam room.  Amy and I smirked at each other for a bit.   He stuck the scope in me while the 3 of us watched the bladder scope on a giant screen. It was quite interesting, and rather uncomfortable to say the least. It felt like that scope was all the way up into my throat, I swear.   While he took a look around my bladder with the scope, he kept saying “see, all looks good, clear, nothing here, nothing there.”  Right when he was about to pull the scope out, he turned it a bit to a different angle, and then we saw it - a big gangling growth. It filled up the screen. A gangling thing with tons of little fingerlike tentacles. It kinda looked like a patch of broccoli but a bit more wavy. “What’s that?,” I immediately said.  The Dr. didn’t respond.  There was silence. He was speechless. I'll never forget the look on his face. He was in shock. Finally he said, “that’s an abnormality, and it needs to come out.”  I said, "is it cancer?" He didn't say anything right away, but we all knew.
       I can’t explain the hell I went through the next few hours (or should I say days, weeks, or better yet, months).   I’ve obviously never felt anything like it - extreme fear like I had never known before.  I had cancer, and I knew it. The Dr. knew it.  Amy knew it. We all new it.  My sister Kristyn texted me, “how did it go?” I wrote her back. “Cancer.” “No way.” she wrote.  I said "yes."   5 minutes later, I was scheduled for a tumor removal surgery 3 days later on Thursday November 12th.  The Dr. was booked out for a while, but after what had happened he opened up a lunchtime surgery slot for me.  I wanted that gangling growth out of my insides ASAP.    The Dr. called Kristyn to explain everything to her.   She then left work early, drove to the medical center, and met Amy and I in the parking lot. I was the youngest person the Dr. had ever diagnosed with bladder cancer, at age 31.  We cried, shook in fear, paced back and forth in the parking lot, and finally I called mom and dad - who were in a movie theater in Idaho while on their vacation.  They left the theater, and immediately began the long drive back to Colorado right then.  I then called my brother Scott and his wife Rebecca, and told them the news. It was a living hell.
Tumor surgery day. More tears than smiles,
but we cheered up for the camera.
 
Three days later, the surgery went well, and the pathology report came back about 4 days after the surgery.  The waiting period was unbearable.  The Dr. had said it would likely be 7-10 days before we had the pathology report back, but thankfully it came back sooner.  I vividly remember the Monday morning after my surgery. I was so low I couldn't get out of bed. I was in bad depression.  I was shaking with so much fear and anxiety, my body wasn't functioning.  I was crying out to God; literally crying out that I needed an answer, and now. I need the pathology report right then, or I didn't think I could make it through the day.  5 minutes later, the doctor called me with the results.  I had low-grade, non-invasive urothelial transitional cell carcinoma.  Yes it's cancer, which we already knew from the look of the tumor, but they caught it early and before it had spread through the muscle wall and to other organs. I was lucky, very lucky. Most people don't even have visible blood in their urine at this stage of bladder cancer, but rather only microscopic blood. Many people, by the time they have visual blood, have a more advanced stage. I was lucky to say the least.  The doctor had decided not to inject any chemo into the bladder during surgery, which they often do, because of my age, the side effects, and the look of the tumor.

 I found who I was told was the best bladder cancer doctor in town, Dr. Maroni of Univ. of CO cancer center, and saw him a week later. He would become the doctor I see from here on out.  He will do my future cystoscopy scopes, one every 3 months to see if the tumor returns. I will do this for a few years, then we can space out the scopes if the cancer doesn't return in the first 2 years.  I've been told this type of cancer comes back about 50-60% of the time in the first year or so. If that's the case, then a local chemo and a hard-core treatment called BCG will be necessary, but we are praying it's gone for good.  I had my first scope a few weeks ago, and it was clear. Praise God.

Looking back, I still have no idea how on earth I got bladder cancer.  It just doesn't make sense, but that's life sometimes. I have exercised daily since 5th grade, eaten healthy, never smoked, and have no family history of cancer. The doctors were perplexed.  When I think of the sequence of events leading up to my diagnosis, I feel very fortunate.  I am very glad for the green snake dream, and the sequence of events the morning of Nov 12th, which made me insist the doctor scope me. It's why the tumor was found.  I'm thankful I had blood in my urine so early on.  The 3 days prior to my surgery, I had no blood in my urine, so who knows how long it would have been before any other symptoms would have come.  I am grateful it was not an aggressive, advanced tumor.  I am thankful the pathology report came back in just a few days, when I needed it most. I have a lot to be thankful for. When I tell other doctors my story, they tell me I'm extremely lucky.
My 3 month bladder scope. Many more to come.
The journey since getting diagnosed with cancer in November has continued to be extremely difficult. I sit here today feeling like the cancer is a much lesser concern than my current fears.  My hope is that the difficult health issues are in the past, but I am dealing with some more unknowns relating to my health.  Amy reminds me that God is screaming at me to "trust him!", and will continue to scream at me as loud as possible until I learn to give up control. Completely. Perhaps until I get to the point where I give up control, and put my trust in God, and have a peace that surpasses all understanding, I will continue to struggle with fear.  I'm not sure if that's how God works, but it's possible. I don't think he tortures us, or necessarily causes disease in us, but I do think he gives us trials that are so freaking hard that we have no other option but to say, 'God, I give up. I surrender. You are in control of my life. Clearly I am not.'   How would one grow in trust without opportunities to practice this? It wouldn't happen.   Every day I wonder what God is teaching me today, and wonder when these difficult lessons will end.  I wonder why I continue to be strangled with fear some days.   I know there are reasons for all of this, but I struggle to understand them at this point in time.  I remind myself of the story of Job in the Bible, and that God will not give us more than we can handle.  Sometimes I say, yeah right God - you've already give me more than I can handle. Way more! But I look back a the end of each day realizing I did make it through the day. I did handle it, somehow.

Since my surgery, I have had many odd symptoms and some blood and urine tests that have come back a bit abnormal, which doctors are still looking into.   It started a few weeks after surgery; my sister Kristyn encouraged me to get a physical since it had been a while and no one had drawn my blood in over a year (since October 2014, after Ironman Chattanooga - my last blog post. I did some blood tests to look into my cramping issues, in hopes to find a cause of muscle cramps such as low electrolytes).  You would think when you get diagnosed with cancer, doctors would draw your blood, but no one had yet.  My bloodwork from my physical came back with a very high red blood cell count, high hemoglobin count, and a high hematocrit level (55.9) - which is referred to as a condition called polycythemia.   I repeated my labs a week later to confirm if the original tests were accurate, which they were. I've repeated them about 4 or 5 times since the original blood draw in December, in addition to a bunch of other advanced bloodwork which the doctor was looking into things like leukemia, a pre-cancerous blood condition called polycythemia vera, and bunch of other hereditary and specialized blood tests.   I'm probably 15-20  rounds of blood tests beyond that first blood draw in December, and have been doing additional tests every week.

The polycythemia  was the start of many odd symptoms that have developed the past few months since December or so, including abdominal distention, blood in my stool, headaches, fluctuating vision changes and blurry vision which started Christmas eve, an ache on the right side of my abdomen, an odd skin rash,  large lymph nodes found on an ultrasound, very high blood pressure (160/100+), and facial flushing episodes where my facial skin turns red from my neck up, and my cheeks have a tight and tingling sensation. The past few months, the symptoms have continued to come and go, and my visual changes have gotten worse...until the past week or so, which I've seen a lot of improvement actually.   A few weeks ago while driving, I had an episode of blurry vision that got pretty bad. I felt like I was floating while driving home, and couldn't focus on the road.  I shouldn't have been driving.  That was the day I decided I needed to get it figured out, as my symptoms were getting worse, and starting to affect my daily life a lot.  Also, my hands had started to go numb at nights also, and a few nights I work up in the middle of the night having to walk around the house shaking out my hands to get my circulation back.   I've had a lot of odd stuff going on and I know something is causing it.   I've gone through many tests the past few months to try to figure it out.  Much of the problem was getting  to the right doctors.  My hematologist (along with several other doctors) who I see to monitor my polycythemia didn't take me seriously when I would explain my symptoms.  Every visit I'd come back with more symptoms, and he coughed it up as being  from anxiety from a young man who just went through bladder cancer.  He didn't take me seriously.  I tried to show him photos of my swollen stomach, bright red flushed face, etc but he didn't care to see the photos.  It was tough, feeling unheard again.    Finally a few weeks ago I saw an allergist who told me I have many symptoms of a neuroendocrine tumor, which can secrete hormones and cause these episodes like facial flushing. Thus, more testing began. He ordered a 24 hour urine test (for a carcinoid tumor), which came in abnormally high - however not quite as high as he usually sees in those with carcinoid tumors.  Tests also came back high for epinephine and cortisol levels, so they've begun additional tests to look into other things. I got connected with a great endocrine doctor and then an excellent GI oncologist last week. To be honest, they don't know what's going on.  They had a suspicion of possibly a neuroendocrine tumor, but they say not all my symptoms align with it either, so they aren't jumping to that just yet. Also, some of my follow up blood work for many types of these tumors came back normal as well.   I am still waiting for a few more important blood tests to come back the next week or two. Hopefully I will have some answers soon, and some good answers.   Medicine is extremely complicated. There's no one simple test to tell you what's going on.  You just have to keep after the tests, and pay attention to your symptoms.

 Although I haven't raced triathlons since Oct. 2014, and since this blog is supposed to be my triathlon blog, I'll tie it back into the sport a bit. I love sports, and being away from them for a while has made me miss it more than ever.  When I see my friends still into triathlon, I long for that lifestyle back.  I wonder every day if I'll ever do another race.  I would love to have a comeback story some day, but I'm focused on endurance another type of event right now, and I don't care about a comeback story right now. I just care about healing, and being there for my family, really.  So, my polycythemia has given me a hematocrit level of 55.9, and let me just tell you, that it feels awesome.  Essentially I have blood like dopers blood, and it feels crazy good. Obviously I have never doped, much less over a year after stopping triathlon racing, but the doctors questioned it due to my pro racing background and were looking for an explanation.  I hadn't exercised much the past year at all, but I started running a bit again about a month after my surgery because I knew I needed running to keep me sane.  The first month after my diagnoses, I was too depressed to do much of anything, but month 2 I got back on my feet, got back to work in the real estate world. and forced myself to get to the gym a few times a week.  As an athlete, it always takes me a long time to get my fitness back after taking time off, and I have crazy muscle soreness for many weeks until my body gets used to the training again. That said, this time around I started running 7 minute miles with ease, and with minimal breathing, and with no muscle soreness after runs.  I knew it shouldn't feel that easy after a year off. After my first run, on my next run a few days later I was running 6:45 pace with ease, and then 6:30 pace a few runs later.  This was all on the treadmill at 1.5% incline, the same incline every run, and after almost no exercise all year.   I began to notice I had zero muscle soreness after all my runs and  weight sessions.  6 months prior, one ab workout left my entire abdomen and rib cage sore for a week. Meanwhile, now I started doing 20-30 min core workouts, with weights and running all in the same day, and have no soreness whatsoever. It's crazy. I feel like superman.  I knew something wasn't right.  I trained for 35 hours a week for a few years, therefore know my body very well.  I knew something was up, and I'm suspecting it has to be due to my blood.  Dopers take EPO to get their levels where mine are at.  I know one thing now, doping works.  There's a huge advantage.   Last week we ended up doing an EPO blood test, and my EPO was in the normal range, so the polycythemia isn't from an EPO-secreting tumor, which was one of my fears.

At one of my early blood tests a few months ago, my hematocrit went down to 53.8 from 55.9, and I could tell I was running about 20 seconds slower per mile at the same effort as the week before with higher levels.  Crazy.   My hematocrit was 50 after Ironman Chattanooga in October of 2014, which is actually the top of the normal range, but had jumped way up since then. I remembered this because my coach John Spinney of QT2 Systems mentioned it was good that my hematocrit was high. That's what athletes want.  I hadn't trained much since that race in October of 2014, so the doctor and I knew the odd blood levels was a recent change, and not from athletic training. We looked back at my labs from 2009, 2011, and 2014 - the polycythemia was new and recent, and doctors are still trying to figure out the cause.
Time with Riley last week, date to Build-A-Bear.
It's been a total roller coaster the past few months, and I'm slowing learning I cannot control my life. I'm trying daily to give up control, to focus on trusting in God's plan, and focusing on making my priorities right - God first, then family.  I have put work over family for several years now.  I'd like to say I've come away with a better perspective after all this. I still have a ton of work to do, but I am very aware that tucking my daughters into bed at night is much more important than working on my next real estate deal. I love my family more than I thought I ever could, which honestly is why I have so much fear with everything going on.  For a few days there, I couldn't hug my daughters without crying, just in fear of losing what we have.  But it's not in my control.  What I can control, is how I love my girls, and my wife - something I am working hard on.

Every few days for months I have had tests, and more are likely on the way until we figure out the cause of my wacky fluctuating vision and polycythemia. I've gone through the ringer the past 4 months. I've had a tumor surgery, a CT scan, an upper GI endoscopy scope, a colonoscopy, a brain MRI, abdomen MRI, pelvis MRI,  chest MRI, heart echocardiogram, 2 ultrasounds, oxygen sleep test, 24 hour urine tests, and probably 60 vials of blood drawn... thankfully most everything has come back normal other than some blood and urine tests.
Family time.
I am meeting Tuesday with a hematologist again as they continue to look into the blood and other issues. I am guessing they may want to do a bone marrow biopsy, to see if the polycythemia is primary or caused by something else. I am taking it one day at a time. Thank you for your love, thoughts, and prayers.  It's been you, my family and friends, who have picked me up daily and given me strength when I have none. 
I need to constantly remind myself how fortunate I am, how my bladder cancer was caught early, how many test results have come back normal, and how things could have been so much worse.  I have a ton to be thankful for - sometimes I let my fears get in the way and distract me from giving thanks.
I've noticed the past few weeks, God has really helped me adjust my mindset.  I have been able to live lately releasing a lot of the fears I had.  I'm back to living a much more normal life, apart from a few doctors appointments here and there, and have learned to be patient. I'm really enjoying my job again (here's what I do: www.thepodiumteam.com ...I'm no longer racing or coaching, which ended a few years ago), loving working with people in real estate, and it feels so good to focus on something, and someone, other than myself again.  I'm trying to be more intentional with the relationships I have through my job and elsewhere, and know I need my job as it's a big opportunity to get my mind off of myself and focus on helping people.    I've learned it's ok to soak up joy from the things I love, like real estate and endurance sports, even when other parts of life aren't totally figured out.

I've also found that there is strength gained from the strength of others. When you are weak, you still find strength. As vulnerable as it is writing here about life since November, in a way it's therapeutic to get it out on paper after months of bottling things up inside.  My hope is that my blog eventually becomes more a place of happiness, encouragement and inspiration to others, and a place others can experience God like I am beginning to. I know he is faithful and with me on this journey.

11 comments:

Christie Wieger said...

I will be praying for you Ryan. Thank you for sharing your powerful story about learning to let go of fear. It is so hard sometimes. I would love to hear about that dream; God is so Good. I think about you often as you were the one to open up my car door after my car accident, and I thank God that I didn't decide to swerve to the side that day!! God bless you and your family. I pray that He leads you to all the right doctors, brings you the best friends and family for support, heals your ailments, and gives you precious moments and crazy fun times with your wife and babies! Keep trusting Him!
Christie Sanghi Wieger

Ryan Borger said...

Thanks Christie. I ended up re-writing a lot of that section with more detail about the dream. I found I couldn't really explain my full story without it. Thanks for your prayers. I hope you're doing well.

Caddell said...

Thanks for sharing more of the story of your last few months. Danielle and I will continue to pray. Please let us know if there's anything we can do since we're so close by!

vanbergen said...

Ryan. Thanks for writing this. You and your family reunion in my prayers. It's amazing how God uses others to help guide our lives.

Trevor Stultz said...

Thank you for being vulnerable and sharing your story. None of this caught God by surprise. He is sill sovereign and Holy and has your back Ryan!

The guys at Multisport Ministries remain in prayer for you, standing I agreement for complete healing. We love you bro!

Matthew W. Carlson said...

Me, my family, and MsM brothers pray you experience peace, healing, and the love of God unlike ever before. If you or your family ever want a respite up here in Winter Park, hit me up! We make great babysitters. Thanks for sharing! Much love bro

Joyce McGibbon said...

Are you on Niacin? I had face flushing and intense itching like an allergic reaction. It took me a while to figure that it was a side effect of (slow release?) Niacin.
Thank you for sharing. Will keep you and your family in my prayers.

J.D. Grubb said...

Yours is a stirring story, Ryan. I appreciate you sharing it. Hallelujah for the renewed strength that you are discovering through God's presence - in Spirit and community - through this challenging chapter of your journey. I will be praying for you and your family as you continue to navigate the path ahead.

Ryan Borger said...
This comment has been removed by the author.
Ryan Borger said...

I am not on niacin. Thank you for your prayers.

Dean Kapu said...

Aloha Ryan,
Thank you for sharing your personal trials. We take the blessings of life for granted. I came across your blog by accident, well I'll call it an accident? I don't think is was by accident. I was browsing the Kona Iron man World Champion site which will take place this coming Saturday here in Kailua Kona. I was browsing the site, clicked on a photo of a bike and your picture and blog appeared, and I read it. I strongly believe that Hevenly Father imparts his will or spirit upon us, to strengthen our belief that their is a god! May the Lord Continue to bless you and your Ohana (family) and your Dr's always!
Godspeed
Dkk