Tiny Cheers

Progress!! 

Kind of. Mostly!

I received a call from the Mayo Clinic, in Jacksonville, today. They received all of the referral paperwork and were ready to schedule an appointment for me to see the Orthopedic Oncologist. 

In about 3 weeks. 

I truly am happy to have steps in the right direction (towards answers) and am glad to be on their calendar, at all. There is only one Orthopedic Oncologist at the clinic and she will be out of town next week. So, it's cool. We have learned to celebrate (woo hoo!) each bit of progress, so I wanted to share this great update with all of you. 

This type of celebrating happened *last* February. Way more fun. 

I am also blessed to be celebrating 12 years of adventurous, love and laugh-filled, marriage with my husband, this weekend. Won't that be an excellent way to pass the time while waiting for my appointment? 

We'll wear grown-up clothes and everything 

On the running front : there's not been much of a change. The rest of my body still feels great and fit. I've kept up with any strength training that doesn't hurt. Yoga is feeling great and keeping me bendy and calm. (not quite as bendy as the instructor) 

I've now missed out on seven (7!) races I was registered to run or pace, since this mess. That doesn't get easier. 

I dreamed that I hadn't yet registered for Boston and was so relieved. Until I woke up, of course. That trip is up in the air, unfortunately. It seems unlikely I'll be in marathon shape in less than eight weeks, but giving up hope isn't in my (disgustingly optimistic) nature. 

How else will I get a new shoe charm? 

Back to waiting. Still waiting. Waiting is my new thing. I have had so many doctor visits and so many tests over the past few months. This one HAS to be The One, right? 

Regardless of the outcome, we'll all celebrate another step toward fixing this. 

What are you celebrating, this week? 

Guess What?

Chicken butt.

Ha.

He likes my jokes. 

Other than knee-slapping humor, I don't have much to share at this time. The amount of time that has elapsed, with no updates or progress, is making people feel helpless and anxious. 

I get that. 

By some stroke of luck, I have been able to tap into some sort of calm, zen state of mind about the situation. While I would love to have the pain gone, receive answers about what the "undefined" growth might be and how to fix it...I don't. I am confident that all of that is coming, though. That thought is enough to keep me at peace, for now. 

That explanation isn't some backward way of bragging. It's simply to explain this : I don't stress about it until someone reminds me to. 

Moving on...

Boring details! It took quite a while for my primary care doctor's office to gather all of the necessary information to submit to insurance. It was finally set and sent on Monday, 02/15. We have since learned that our insurance company has up to two weeks to process the scans, doctor's notes and recommendations. 

If the company decides to approve of the current plan, they will contact the Mayo Clinic who will then call me to set up an appointment with their Orthopedic Oncologist. 

I've also seen it spelled "Orthopaedic" and really enjoy that variation. 

The pain remains. While it is not the acute, I-need-a-wheelchair-at-the-airport, pain of December, it still lingers. Annoyingly. 

Despite this, I've been a bit more active, this week. I'm keeping a close eye on my heart rate and keeping it low as I test out some run-walks. While it doesn't feel like "Yeah! I'm running!", it's worlds better than being completely inactive. 

I guess. It mostly still sucks. 

And when I'm not talking, I'm thinking about it. 

Update: I just received a call from the processing department. The request has been approved and Mayo Clinic will be calling me to schedule an appointment. 

Thank you for all the crossed fingers, positive thoughts and prayers. It totally worked! I'll let you know your next task, soon. 

xoxo 

Stalled

I had a two-paragraph rant about how much we pay for our family's insurance and how little that has actually provided us. (unless we're talking about grief and hassles. It provides a crapton of that)

I've pared it down to the above sentences. Complaining isn't productive and it makes me feel gross. It did feel fairly refreshing to pound out angry words on my laptop, though. 

not as refreshing as running, obviously. Hi, Dad!

As you may have surmised from the title, there has not been a ton of progress. I finally received a call from the Orthopedic Oncologist's office who informed me my insurance does not cover any doctors outside of our county. 

Nice. 

There are zero (none, nada) Orthopedic Oncologists in our county. 

This new setback led to another day spent waiting, making phone calls, trying not to cry and not always succeeding at any of that. As the hours wound down, though, it was apparent we were faced with another. wasted. day.  

Friends and family have kindly asked for updates, so there it is. Tomorrow will be spent doing what I did, today. If we are able to connect the right pair of doctors, we might be able to get an appointment for a week from now. This will be a consultation, and unlikely to garner any solid answers. 

Just another step. 

Fun side note : If we are not able to get insurance to cooperate with this process, the aforementioned consultation will cost $750. 

During the interim, I've tried some longer walks and even a bit of jogging. It hurts. The pain doesn't let up at any point. A smarter runner may even label it "unbearable" or "not something I can run through".  Luckily, as I've pointed out in the past, no one has ever accused me of being particularly smart. 

Here is my thought process : 

If it is/was a stress fracture, it now has a calcification so big and strong, the doctors are unable to detect any evidence of the actual trauma. At that stage in a healing process, I should be able to run. 

If it is a tumor, I can't be causing any further damage by testing out the legs. It's simply a matter of just how much pain I want to endure. 

Care to share your thoughts about my thoughts?

One day, my friend and I ran to the Pacific Ocean. Why can't I be stalled in that kind of day?

Still More

I'd be remiss if I didn't, again, thank everyone for their kind words and wisdom. Sharing this has opened up opportunities and insight I could not have even known to ask for. Even the simple "you're in our thoughts" brings us joy and peace. 

Something for me and my family to remember, moving forward. If you don't know what to do to help, a kind word goes a long way. 

Thank you. 

My watch knows what I want to do 

The oncologist's office stayed true to their word and got me in contact with an Orthopedic doctor they trusted. There was a (lucky!) cancellation, and I was able to get an appointment, this morning. After all the weeks of frustrating waits, the last few days have been a blessing. 

The PA and doctor asked a lot of pertinent questions and really listened to my responses. They also took quite a bit of time to actually review all of the scans and written reports. My fear (a bit of PTSD from previous appointments) was that I'd be made to feel silly for all of these steps and tests. 

When the pain initially stopped me in my tracks. (quite literally) There were enough symptoms pointing in the stress fracture direction. When the weeks dragged on and I was still in so much pain, I finally sought professional help to confirm my suspicions (stress fracture) or diagnose a different injury (tear, sprain, etc) and help with treatment. 

With all that's transpired, I fear I give off the impression of trying to dig for something that's not there. That's never been my goal or desire. This was supposed to be cut and dry. I'm supposed to be able to run by now. 

my grandparents are just as enthused by my tangents as you all are 

Back to the update. 

The Orthopedic doctor strongly feels a stress fracture makes the most sense, given most of the circumstances. Based on what he saw on the scans, some of the details and the reports, though, he is not 100% sure. Like the others before him, he was unable to actually find a stress fracture. The growth on the bone could very well be the healing/calcification of an old injury. The margins are irregular, though, and there isn't a single scan that actually shows said, old injury.  Additionally, if the stress fracture is healed enough to be completely covered by new growth, I shouldn't still be having this much pain, at rest. That's my long-winded explanation of why there is enough doubt for him send me on to the next expert. 

They are setting me up with the one and only Orthopedic Oncologist in Central Florida. He will look at the cool pictures of the inside of my leg, listen to me tell this boring story for the umpteenth time, and tell me if he thinks it's a tumor. More tests are likely, surgery is possible, impatient waiting is an absolute given.

In a lovely world, the doctor would have showed me, on the scan "here is your running injury and this is how we fix it." Come to think of it, that's what I have been hoping with every appointment I've had since the beginning of January. That didn't happen, (once again) but I am glad he is not taking any chances.

So, that's where we are in the process. Feel free to ask or share anything you'd like about the situation.

Plus, if you have pain you are not able to ignore, during physical activity, consider seeing a doctor sooner, rather than later. In my experience, it hasn't always been necessary. We aren't always qualified to know, though.

Overwhelmed

Contrary to what appears to be an over-share, I am a fairly private person. Being the center of attention makes me uncomfortable. While I'm not terribly shy, I am reserved. (if that makes sense)

A lot of you are not shocked by that statement. 

I agonized over the decision to share my recent story. In the end, I realized I don't know much...but I know running. If my experience helped even one runner, searching for answers, it was worth the extra attention.

"Thank you" will never begin to cover the feeling my husband I have regarding the outpouring of support we have received. If someone can come up with a phrase or gesture to fully convey "holy cow. We don't deserve this much love and you are all absolutely amazing", please let me know.  I just...I'm blown away.

Feel free to skip or skim any of the updates posted. Again, I'm desperate to NOT seek attention. I do feel that the information is, or could be, invaluable, though. Additionally, it has already opened doors to people I would not have normally met, who have excellent insight.

So...another sleep-deprived, head-full-of-new-information update: 

important. Plus, posts without pictures are lame

My primary care office was ON IT, this morning. After all my previous struggles, they've done a complete 180 and are now a fully functioning piece of this. I am very grateful for what they accomplished, today. 

I saw an Oncologist/Hematologist first thing, this morning. He did bloodwork and found no red flags. (yes!!) 

He also read the reports from the MRI and CT Scan, (but didn't have any of the images) and was not as convinced as the other doctors that what they're seeing is a tumor. 

Here is my concern regarding this piece : As soon as I told him I was a runner, he stopped taking notes. I worry he is being too quick to write this off as an injury. Yes, we will all do a (so careful) dance of joy if this a stress fracture that has not shown up for 3 doctors on 3 different scans, but that just seems "off" at this point. Neurotic over-thinking and sharing? Maybe. It's kinda my new thing. 

Additionally, he explained how bone biopsies are not like other biopsies. If this were any other part of the body, they would likely start with a biopsy. However, with it being so invasive and delicate a procedure, he wants to check a few more boxes before taking that route. Fine by us. 

This doctor spent a great deal of time with Art and I and we left feeling confident with his decisions and much more calm about the situation, as a whole. 

To be clear : No cancer has been confirmed or diagnosed at any point. 

I now have all of my scans on a disc, as well as a fresh, new, chest X-ray. If it is Sarcoma, the lungs are the next place it would have traveled, if any traveling had taken place. Again, nothing confirmed, denied or diagnosed. Simply another box to check. 

The images will be taken to an Orthopedic doctor he trusts. The oncologist tells us (more or less), that this fine gentleman will say : "This is MY specialty. What you have is an injury and here is how we will fix it." 

or 

"This is MY specialty. In my experience, I have not seen an injury that looks like what you have on these scans. It is time for a biopsy" 

So, that is the next box to be checked. The skilled Orthopedic doctor who holds more answers. 

Again and again and again : Thank you. Your concern, comments, texts, thoughts, love, prayers, offers to help and wisdom have made this day one trillion times easier than it should have been. 

Since I have you all here, and this is technically still a running blog, I'll leave you with a picture of my toes after running 100 miles. My gift to you. 

YOU'RE WELCOME!! 

Never Running Again

I have been staring at this blank page, at 4:00 am, trying to figure out how to put this into words. There doesn't seem to be a clever or catchy way to start, so I'll stick with what I know.

The story. 

In early December 2015, I ran the OUC Half Marathon in Orlando. Track Shack does a spectacular job of trying to make you forget what a truly awful race it is. The pre and post-race excitement *almost* tricks your brain into thinking "I should do this, every year!". The heat, uneven cobblestones and boring streets just can't be forgotten, though. 

It was part of my training, so I gave it good, tempo effort but didn't go all out. The time (1:37ish) ended up being 2 minutes faster than I'd previously ran there (2013). 

woohoo! 

I diligently completed all of my post-race recovery steps and felt good. Tired, a little achy, but good. That evening, I stepped out of the car, after a road trip and nearly toppled over. My right calf was NOT happy. As any neurotic runner would do, I proceeded to gingerly hop on it and was terrified at how much worse that felt. 

Crap. 

The next two weeks were agonizing and stressful. My goal race was looming. 24 hours, on a 400 meter track, with the intent of qualifying for the US National 24-Hour team, is not something one can go into half-heartedly. 

I iced, heated, elevated, and had the magic hands of Debbie upon me, more than once. Above all, I didn't push it. During those weeks, I only tested out my running legs a couple of short times. The training plan was furiously re-vamped to include nothing but rest and recovery. 

I can honestly say that when my husband and I boarded the Arizona-bound plane, all the calf pain terror was behind me. No medications involved, no fingers crossed. My biggest fears were getting my gear and nutrition set to keep my body going strong for 24 hours of running. 

The details of the race aren't important. The highs of dining with some of the most amazing athletes I've ever encountered, were swiftly followed by the nauseating lows of limping behind all of them after stabbing pain hobbled me a few, short laps into the morning.  

My husband and dear friend  were so patient and loving. I am still so thankful for the way they picked up the pieces and got us all home, with (somehow) happy memories of the weekend. 

The phantom, on-again-off-again, calf annoyance was now a full-on, stabbing, keeping-me-awake-all-night  PAIN. I put myself on crutches and treated it like what I suspected it to be. A tibial stress fracture. (<-<-It's cool to use fractured sentences when discussing fractured bones) 

Christmas on Crutches! 

Not being able to run is devastating for any runner. Going from 80 miles per week, to zero, was really hard to wrap my head around. With it being a weight-bearing bone, this could continue for at least eight weeks. However, with no actual diagnosis, there was a chance this could all go away much quicker. 

Fast-forward to the day I broke down and went to the ER. Having no Primary Care Provider, it was the only way to get the ball rolling on a diagnosis and treatment plan. I'd fought it for weeks. A stress fracture would be healed by doing exactly what I was doing. Anything else : tear, strain, etc, also just needed rest. However, it had now been just that unsettling bit of "too long" to ignore. The pain was still waking me up at night. I still wasn't able to function as I would like to as a person, much less an athlete. So, to the ER I went. 

The "doctor" peeked at the clean x-ray and immediately turned off his listening ears. He sent me away with instructions to "take a warm bath and possibly try some new shoes" to ease my "shin splints". He refused to order any further tests and the referral he gave me was not one my insurance was able to use. It was a maddening waste of my valuable time. 

But I kept at it. 

New insurance policy, new doctors...it was a mess. Once I started down that path, though, I was either going to get to the bottom of this or stop being in pain. The pain lingered, my frustration and depression grew, so I kept pushing. 

being listed in magazines helped 

Again, trying to shorten this months-long story, so feel free to ask any details you feel are pertinent. 

For now: there was an MRI. Waiting for the results was maddening. The results were even more so. No stress fracture was detected. "unspecified" bits showed up. This meant there was proof something was causing me pain, however, any imaging had so far failed to determine what that might be. All of this was wrapped up with "BUT, it could still be a stress fracture." 

Lovely. 

Last week, I had a CT scan. There were more hoops to jump through to get the results. This finally resulted in me driving to the doctor's office, to pick up a copy. If necessary, I could schedule a follow-up when the doctor became available. For now, though, I just wanted to try to decipher that report and get some answers. 

When my eyes fell on the word "sarcoma", in the report, the world quickly became very small, very quiet and very still. 

I showed it to the receptionist who put me on the schedule to meet with the doctor an hour from then. 

To think of how devastated I was at the prospect of not running for 8 weeks. That my gripe was how much fitness I was losing, how many races I was missing out on, the fun times with friends out on the roads and trails. 

Looking at an upcoming bone biopsy and being faced with, among a dizzying amount of unknowns, the thought of Never Running Again. 

Suddenly, 8 weeks doesn't seem so bad.