Relief (ish)

Yesterday, my husband and I were finally able to meet with the Orthopedic Oncologist at The Mayo Clinic, in Jacksonville. 

If you're confused by that sentence, you'll want to go read the past few posts and get caught up. 

Now that we're all on the same page... 

Art took time off work and suffered through the Bike Week traffic to make sure we both arrived, safely. (thank you) However, the clinic requests that the initial exam involves only the doctor and the patient. We had misgivings about not having two sets of ears during the visit, but he agreed to remain in the waiting area, nonetheless. 

I would not have wanted to be The Waiter and am so impressed at his coping ability. (thank you, again) For the record, waiting in the exam room wasn't sunshine and rainbows, either. I tried to distract myself, but my erratic heartbeat and rapidly spreading Stress Hives just wouldn't let up. 

The boys were being cared for and entertained by my mother-in-law, which was an enormous help. (thank YOU, too) While Art and I embarked on this roller coaster road trip, they ate snacks and cozied up for a movie. 

the boys know how to work it

The facility is wonderful. (fun fact: It's also the site of the marathon where I ran my first Boston Qualifying time) I would recommend it to anyone seeking a comforting, comprehensive and state-of-the-art medical center. Our appointment was so late in the day, there was a bit of a "skeleton crew" feel, but that simply made it more peaceful. The remaining staff were all attentive and professional. 

I am not trying to drag out the results of the visit, here. As is always acceptable on this blog : Feel free to skim. I sent many texts, and made many phone calls, after seeing the doctor. I am sorry. I know I wasn't able to personally tell everyone.  There was a lot of traffic and thoughts and not a lot of time. 

The Orthopedic Surgeon came in and asked "So...you're a runner?" I verified and she told me 

"You have a stress fracture." 

She then showed me, on the MRI from January, the dark, almost vertical line running up my tibia, surrounded by a mass of swelling. 

It was difficult to focus on what she was saying, while so many conflicting thoughts were swirling. It was good news. So good! She talked about upping my calcium intake, I asked some annoying questions and I was on my smiling way to tell my husband we could all breathe, again. 

We focused on getting all of us home, so we could relax even further and celebrate our relief. 

not shocking: probably would've drunk this, regardless 

I may or may not have spent a reckless amount of time on this site and even started tossing around the idea of going to Boston, after all. It was a great night. 

Until 4 am. 

My eyes popped open and all sorts of rational and irrational questions and fears completely overwhelmed me. I began to recall bits of the visit I had pushed back in my mind, after hearing the diagnosis. The happiness became fuzzy and then started to fizzle away, completely. 

In a moment of Completely Outside My Comfort Zone,  I grabbed the doctor's business card, swallowed my fear and tried to call her to pour out my concerns. 

Note, it was a more reasonable hour when I attempted to call 

It is an 8-5:00, Monday through Friday number. With the extra time, I will either become much less neurotic, or simply wait (it's what I'm good at, remember) and still call her, Monday. 

In no particular order. And, for the love of everything sacred and beautiful, please feel free to end your read on a "It's just a stress fracture!!" note. Skip the following thoughts and still think somewhat highly of me. 

If you decide to keep reading, please accept this as my apology : When 4 doctors,  2 Physician's Assistants and 2 Radiologists are concerned, for months, that your problem may be a tumor and cancer, it's hard for your brain to accept, from 1 doctor (an expert, however) that it's truly just an injury.

• Why did 2 radiologists see the same, black, line and call it a lesion? Why did they call the swelling a tumor? The difference: They were told to look for a stress fracture on both the MRI and CT scan, but not given any background information. 
• This doctor knew I was a runner. Did it cloud her judgement? Running doesn't necessarily equal stress fracture. I had zero, classic symptoms, signals or causes leading up to the pain. Here is what else can cause stress fractures : tumors 
• Why did she not read their reports? 
• When asked to explain why the other doctors had seen the same scans and had noted "no visible fracture line", she responded with : "They lied." A more scientific or believable response would have gone a long way. 
• Why not order a new scan? The ones she looked at were from January. Wouldn't it help to verify a healing fracture or confirm that the mass hasn't grown or changed? 
• I am still in pain, after 13 weeks. 

Bottom line: I just need some additional reassurance. 

Obnoxious and panicky? Probably. 

Unreasonable? I don't think I care, anymore. 

Even better bottom line: We are all rejoicing and celebrating. The expert confirmed our fears can be alleviated and we can focus on the huge positives. You guys stick with all that and I'll worry about the rest. 

Thank you, again and always, for all of the kind support through this process. I hope to be able to celebrate over and over and over with anyone who will join me. :) 

Ready to Celebrate

After 3+ months of physical pain and uncertainty, I really am.

If we are all focusing our efforts on The Power of Positive Thinking, let's be clear on what we are hoping for at today's appointment at The Mayo Clinic.

Another step towards a definitive answer and plan of action is almost inevitable, so let's not waste too much effort on that one.

This is what I am still pulling for : "All of this tumor talk was nonsense. You have an injury, plain and simple. Here it is, on this scan. I am certain and you can be, too." 

When Dr. Sherman tells me that, we will giddily drive home, share the good news with everyone we know (whether you all like it or not) and crack open this baby :

Thank you, sweet friend 

Enjoy your Fridays, knock out a few miles for me and we will all re-group, soon, to celebrate, together. 

xoxoxoxoxo

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!!