Thursday, March 23, 2017

Crutch: The Unwelcome Sequel

I admit that I stopped writing on Crutch, the original blog, because I lost hope of a full recovery and I didn't know what to say.  In November, after attempting everything I knew how to do to recover, I tried running again. I was gentle.  It was a very soft run/walk pace for less than 2miles.  It hurt. It intensified for a few days and then it improved back to its normal level of difficult to miserable pain.  So the next week I tried again.

Bad idea. Intense, unrelenting pain radiated from my back into my hip and all over my leg. I thought rest would settle everything down.  It didn't.  I laid in bed in pain expecting things to get better, but it never did.  Intense pain took over my life and left me with very little of myself.  Every morning I woke up I would dread it because the pain cycle would begin again.  I began to wish I were dead.

I couldn't sit or stand for longer than three minutes without the pain becoming so intense I wanted to crawl out of my own body.   Compartmentalizing pain took 90% of my brain function.  I started avoiding people.  I didn't want to explain how much it hurt or what my plan was for resolving it.  I had one, but I was trapped until my new deductible year began again.  I continued to work as much from the bed as possible, but it was absolutely miserable.  The pain cave is a dark, deceptive place to reside.  I was desperate to escape it.

Thursday, January 5th, 2017
 I saw Dr. Gombera of the Fondren Clinic.  The clinic X-rayed my right hip and I waited to see him.  He listened to my history, assessed my pain location, then he told me he felt the pain wasn't coming from my hips.  That it was possible the pain was never coming from my hips.  He kept repeating, "Ask me another question."  We would think of a concern, he would answer, and he would repeat, "Ask me another question."  Finally he said, "You haven't asked me the most important question of all, should you have had the hip scopes in 2015 to begin with?"

Rich and I looked at each other a bit stunned.  With so many various issues seen and corrected in my previous bilateral hip scopes, we never considered any other answer.  Dr. Gombera responded that I had a condition known as coxa profunda.

Coxa profunda refers to a deep acetabular socket. On pelvis x-rays it is seen as the acetabular fossa being medial to the ilioischial line. It should be differentiated from protrusio acetabuli, where the femoral head is seen additionally medial to the ilioischial line.-

Basically, I was born with deep hip sockets.  Dr. Gombera felt that my deep hip sockets restricted normal hip range of motion forcing my sacroiliac (SI) joint and my lumbar spine into more motion and force than they were designed to take.  He didn't say it quite like that so I can't quote him on it, but his theory did make sense.  It was a possibility.  He did mention that if he operated on me, he would not scope me.  He would want to do an open incision.  He recommended I try pain management first.  This was also logical.  If the pain was generating from an unhappy SI joint, then I wouldn't need more hip surgery.  We would need to treat the SI joint. If the pain was generating from the spine, same theory.  Both of these offered a less invasive option worth trying first.  So we did.

Thursday, January 12th, 2017
I wasn't particularly crazy about going to pain management. To be fair, it wasn't all their fault.  It was the term "management."  It doesn't imply a cure.  I wanted a cure.  I was tired.  The tremendous pain, the unknown-all of it was getting to me.  I liked his office manager, who was helping as nurse that day due to a staff shortage, and once I met him, I liked Dr. McHugh.  He was used to moving at top speed and I slowed him down as I asked many questions.  (The kindest thing we could ever do to our health care providers is put the time to care about people the way they want to back in their day.  But that's another story.)   He efficiently scheduled my procedure.

Friday, January 20th, 2017
I had to be at Southeast Texas Medical Center by 6AM for an SI joint injection.  I was told I could opt out or in for twilight (conscious) sedation.  I opted out.  There were approximately 40 of us there for various injections.  Only two of us opted out of anesthesia.  I didn't want to be sedated.  I wanted to be aware if the short-acting numbing medication injected with the steroid would make any difference  I wanted to be completely aware.  I was most definitely aware they were in the right spot, but I never received the immediate relief other people had blogged about or written about on FB.  Not at all.  Richard drove and we had to throw in some various errands that day. It was all I could do not to lose my temper or crawl out of the car.  None of it was his fault.  We were both optimistic it would help and life doesn't stop just because you have pain.  I went home, went to bed, and never improved.  I ended up with several nights of insomnia and pain.  It was a rough time.  I kept my hopes up though.  I wanted it to help.

Wednesday, February 1st, 2017
I went back into Dr. McHugh's office for the SI joint injection follow up.  I was pacing, my blood pressure was up, I was miserable.  He offered a lumbar epidural based on a 2014 that showed a small herniation at L2-L3, but he argued the prudent thing would be to repeat the MRI.  He was right. Once again, he moved quickly.  He managed to get me in for the test the next day.

Thursday, February 2nd, 2017
I had the MRI.  It was a miserable wait since I can't stand or sit without pain, but I did it.

Tuesday, February 7th, 2017
Dr. McHugh called and asked me if this pain started in my hip or my back first.  I admit that I am not the best pain historian. I tend to live in the moment of whatever I am experiencing.  I said my hip, but that the pain was diffuse and hard to pinpoint now.  I just hurt.  From my back to lateral hip. I was having muscle spasms from my shoulder all the way down my leg, on both sides, mostly the right though.  He asked me to come to his office that afternoon.
I hung up and called Richard.  I said, "They found something, but it's not cancer or they would have asked me to bring you."  The moment I said that, the phone beeped.  I clicked over to answer and the receptionist at Dr. McHugh's office asked me to bring Richard.  I clicked back over and told Richard it wasn't going to be good news.  On the way over, I said to Richard, I've always wondered what people would do if they could go back to the last day, the last hour, the last 15 minutes before they heard the word cancer.  There is something so free in never having to think the C word applies to you.

We sat in Dr. McHugh's office waiting to see him.  It felt he had some news he didn't want to tell me.  He stumbled over the start a few times. He wouldn't look at us. His face stayed focused on his portable computer screen.  He asked me if I'd ever smoked and I answered yes.  He asked how long ago.  It's been 12 years now.  Then he told me that my MRI showed something that he felt was myelodysplastic or myeloproliferative disease.   He didn't say the word cancer.  We were locked in this strange politeness about who would be the first to say it.  So I said it.  Cancer.  Bone marrow cancer.  I asked him how certain he was I had this and he said he was 100% certain.  He said if the radiologist had remarked on it on my 2014 MRI he would be less sure.  I told him I brought the 2014 disc thinking it would probably turn out to be very important to this visit.  He looked at it and saw the same, and I'm quoting the report here, not Dr. McHugh, "heterogeneity of the marrow signal noted with apparent patchy replacement of the anticipated normal fatty marrow signal."  In other words, areas of my bone marrow were different in appearance than expected.  He perked up a bit at this news and when my husband inquired how certain he was now, Dr. McHugh replied he was 50/50 about it.  He wanted me to have an immediate CBC (complete blood count) and he referred to me to an oncologist.  As you can imagine, we walked out of his office stunned.

I cried.  A lot.  I'm not a much of a crier, but I have been here in the last several months.  I didn't want cancer.  Who does?  I meant it from the nurse in me as well as from the patient and human being. I DID NOT WANT THIS!  I didn't want treatment. I didn't want my life and time to be controlled by doctors, nurses, insurance, and hospitals.  (The best part of this whole mess is that Humana is pulling their PPO plan out of Jefferson County so as of June 31st, I would have no health insurance and cancer.)  I was angry, I was hopeless, I was still in decent amounts of pain, even with meds, and I was spending my nights wide awake reading, learning as much as I could. I even had the discussion about opting for palliative care.  It's my life. It's my right.  I get to decide about the quality of whatever time remains.

People said well-meaning things that were completely wrong.  I didn't want to hear how a person's aunt was told she had cancer and the doctors were wrong. Those stories left me wondering whether I should be jealous of the aunt or hopefully guilty that I might be lucky enough to be the aunt, when someone else wouldn't be. I didn't want to be told not to worry. It made feel as if my worry was invalidated.  It made me feel less understood.  I didn't want to hear about putting it all in God's hands.  God and I were doing plenty of talking and believe me, you weren't in on those conversations.  I didn't want to be asked how fatal it would be.  Some people asked questions around it so they could make their own decision just how much would be left of me.

It was hard to control my reaction to people.  So I withdrew.  I talked to a very small and very random group of people about it and no one else.  It was too hard to try to empathize with their intentions.  I wasn't strong enough.  That's something I will always be ashamed of, that I wasn't stronger or kinder, but it's also something that changed me for the better.  From now on, when someone tells me something this life shattering, I will listen, and only listen.  I'll try at least.

But there were funny moments too.  I stopped sleeping entirely.  I was eaten alive with worry.  One night, I walked into our bedroom and grabbed a bottle of melatonin from Richard's bedside table, desperate for some sleep.  As I picked up the bottle, the pills rattled, waking him up from a deep sleep.  His face was straight out of a horror movie.  His eyes,  his mouth, even his little nostrils somehow made perfect little 'O's and he screamed like a girl. (Just like he did once on a ultra run. A a guy ran up behind Rich a few moments later and asked Rich if he heard a woman scream.)  I bent over laughing so hard I couldn't catch my breath, until finally I said, "You should have seen your face!"
He replied, "You should have seen what was lurking over me!"
I left the room to let him go back to sleep, but I laughed by myself for a good hour.

I'm going to skip some things here because while they are relevant to the story, the details would simply make it a longer read and it's long enough.  It is fair to say that Dr. McHugh worked hard to get me into an oncologist very quickly, but that I called on a friend instead.   

Tuesday, February 14th, 2017
Richard and I walked into Dr. Bob Birdwell's office armed with years of lab work and two very crucial MRI's.  Dr. B was at the front desk and asked me for all of my reports. I was nervous to give it to him.  I wanted to sit beside him so I could analyze his every facial expression as he determined my fate.  He sent me to the lab instead.  He wanted a repeat CBC and he, personally, wanted to look at my blood on a slide.  He took my two CD's to a trusted radiologist friend of his and they studied them together.  Then he came into the room and asked me gently and calmly as many details as he needed to put together a full picture.  Then in a manner only this man has, he reassured me he was going to research a bit, look at my blood and it would take anywhere from 20-30 minutes, but that he would come back with an answer.  I don't know if I could have waited anywhere else.  I needed to be in the hands of someone I've spent thousands of miles cycling beside.  I needed someone who truly saw me as a person and an athlete, and not another patient in their day.  Dr. B was so good to me.  He came back telling me that my labs looked perfect.  He said I had a normal bone marrow reconversion process common in endurance athletes and in women using hormone replacement containing testosterone, which I do.  (I had a complete hysterectomy in December 2014 and BioTE has given me some incredible quality of life.   I don't even think about hormones anymore.)

I walked out of Dr. B's office so relieved.  It was the best Valentine's Day present I've ever received.  Later that day, alone in my car, I cried. I didn't want Rich to see it.  I angry cried.  I didn't cry for me.  I cried for all of the people I left behind in that office.  I was so furious that I couldn't take them all with me, that I couldn't share my un-diagnosis with them.  I railed at God that He wouldn't let me share it.  I begged, "Please, please, please God, just let me share this with one child.  Just one child. Let them not have cancer too today."  I cried until I was exhausted.

Monday, February 20th, 2017
I didn't have cancer, but I still had pain, with no answers.  I emailed Dr. Gombera's office explaining that I had gone through SI Joint injection without improvement and had an updated MRI of my lumbar spine that was actually clear.  One good thing about the updated MRI is that the previous mild disc herniation resolved itself.  I requested a CT with contrast.  I was expecting an office employee to reply.  Dr. Gombera replied explaining what steps he would normally take and why, but agreed that a CT with contrast would be prudent in my case.  I was very impressed with his candor and his willingness to take the next step.

Friday, February 24th, 2017
Being so close to the Exygon & Baptist Hospitals Gusher Marathon, Exxpress Mart Half Marathon and Kinsel Ford 5K, Rich couldn't spare the time to go with me for my CT.  I could have asked someone else, but I'm an independent sort of person and I knew I could handle it.  Driving is painful.  Everything is painful, but I deal with it.  I drove there, had the test, and drove back.  It was a long, hard day.  It did feel good in its own way.  One step closer to an answer.  They injected a corticosteroid into the right hip with the test.  It felt amazing around day 3.  Unfortunately, it made me very aware of how much pain I have in the left hip.  I just can't hear the left hip over the screaming pain of the right hip.

Dr. Gombera called me.  He said, "You have a substantial bone spur wearing away at the labrum. It's not tearing it neatly, it's wearing it away.  You  are what I call a 'tweener', you have enough cartilage and you're an athlete so I don't want to take your hip if I don't have to, but you don't qualify for a scope.  This will need to be an open surgery.  I want you to see Dr. Mathews.  He does hip replacements.  I need him on your case.  If we get in there and I don't think I can significantly reduce your pain, I want the option to replace it."  When Dr. Cascio said the words "hip replacement" back in 2015, they sounded like the end of the world. Now, after more and worsening pain, poor quality of life and a cancer scare, I found myself telling Dr. Gombera, "Just replace it. I don't care.  Do whatever it takes to get me off of medications and back to my regular life."  He slowed me down.  He told me we would do what was the absolute best for me.  I asked him if I could have both hips done at the same time.  He told me I wouldn't be able to handle what they were going to have to do to me in both hips.  One at at time.

Saturday, March 4th, 2017
We put on The Exygon & Baptist Hospitals Gusher Marathon, Exxpress Mart Half Marathon, and Kinsel Ford 5K.  In the same day, we also held the ExxonMobil Heads or Tails Cycling Time Trial and the Roughneck, which is a hybrid strength and fitness event.  We spent all day long and all night long on March 3rd hosting packet pick up, registering people, attending to race details and setting up. I went home and slept for 4 hours the night before the race, something I've never done in the 8 years we've held this event.  I had to.  My hips were only going to take so much punishment.  People in the know did their best to keep me from walking.  My buddy Christopher drove me around in the Gallagher Family Ranger, while I "race bossed."  Then I spent the next 3 days in bed.  My hips were toast. 

Wednesday, March 8th, 2017
I drove myself to Houston again for my first appointment with Dr. Mathews.  He asked me a lot of quick questions to assess how well I was handing this decision and if I was making this choice from the right frame of mind.  He was satisfied with my answer. I asked him how quickly I could have the left hip done.  He said, "Looking at your scans and history tell me that whatever we do to the right hip, we'll do to the left hip and we can do that 2-3 weeks after your first surgery."  My first surgery is schedule for March 30th, 2017.  I'll have a 4"-6" scar on the front of my hip and thigh.  I'll either wake up with my own bone or an entirely new hip.  If I wake up with a new hip, technically running is out of my life forever.  It's a simple matter of physics with shear force and loading.  Right now, no study exists to tell me how much life running will take away from a hip replacement.  Even Dr. Mathews, who has a hip replacement, agreed that it might be worth running if a study ever proved it only shortened the lifespan of a replacement by a year or so, but neither of us would be willing to give up five years of hip replacement life.  There are a lot of unknowns, but at least there are options.  I'm keeping my chin up.

Thursday, March 30th, 2017z
Surgery Day

What a day!  I saw a very jovial anesthesiologist  (he was so funny about everything); Andrew, Longhorn-crazy nurse anesthetist; Dr. Mathews, whom the entire staff commented is a fantastic surgeon; his Aggie lovin' PA Sarah; Dr.Gombera the nicest, calmest surgeon ever, and all the other people that go along with surge
I feel very confident in my team. Dr. Mathews was very clear he is leaning hip replacement. Dr. Gombera was there to do his best to save it if possible.  I knew that these two brilliant minds would work together to do the best thing for me.  It turned out to be a replacement.  I don't have any details yet.  Richard said the doctors did not tell him much other than they chose to do a replacement.
I had a hard time with anesthesia.  My O2 Sat dropped and my I went into tachycardia.  I'm on a pulse ox and oxygen now.  Simple enough.  Things are looking much better now that I've had a fluid bolus.  They had trouble waking me up as well. 

It was a little crushing to hear my right hip required replacement, but it was also a relief. I remain undecided about how much I will allow myself to do in the running world, but swimming and cycling should be fine.  Weights too.  Even though this is a change, it comes with benefit of improved quality of life.  I'm okay with that.

Richard has been an excellent help.  He kept me flowing in ice cream once the horrendous nausea abated.  I shared my ribeye with him, and he has been enjoying the snack bag our friend Christi made for him. It's been a long day, but he's not complained even once.  It's times like these that I know he loves me. He's not a man of words.  He cares for me the way he believes I need it the most.  He shows love rather than talk about it. 

Physical therapy came into the room, once I was able to awaken enough to notice. They helped me ambulate around the room with a walker.  I wanted to go out into the hallway and work harder, but PT nixed that.  She said I'm not ready.  Oh, I am ready!  I even brought my pretty Brooks running shoes and wore my Garmin so I can track my workouts.  HA-HA!

I have well-controlled pain and this actually feels a much better than the constant razor blades agony that I was experiencing.  I'm grateful. The left side hurts too and the latest news is that we will replace it in 3-6 weeks now, depending on how well I recover and when the surgery schedule allows me a slot.

But the cherry on the top of the day was when the nightshift patient care technician Michelle looked at my wristband and said in complete shock, "You're 42-years-old?  I thought you were only a few years older than me!"

"How old are you?" I asked.

"Me, I'm 25," she replied, having no idea just how much my ego loved it.

"Oh yeah? Post op, pale, no make up, awful gown, surgical with a drain?"

Michelle, you are officially my favorite person at this hospital and that is no easy feat. The people here are wonderful!  So far, this has been a great experience.

Friday, March 31st, 2017
Post Op Day 1

It's hard to sleep in a hospital.  I had on my big blue JBL headphones to block out ambient noise and lose myself in a podcast to help me deal with the pain.  Honestly, they kept me pretty well medicated so I didn't experience a lot of pain.  I had great care providers.  Tarsha was wonderful, Anna, Heather, and of course my favorite Michelle.  She even brought me a piece of party cake in the middle of the night.

Everyone was very kind.  I can't say that enough. I've had plenty of hospital stays and there is definitely a happy overtone to this facility, which makes all of the difference in the world.

As soon as they sun rose, I was ready to go home. I wasn't discharged, but I had serious plans to get out of there.  My sweetheart, Richard, put my running socks and running shoes on my feet because he knew I was anxiously awaiting physical therapy.  (I hate to brag, but I think I was valedictorian of PT.)   I'm allowed to go home and do PT on my own.  If anything, they kept telling me to take it easy.  Dr. Mathews even gave me cautionary tales to keep me mostly in the bed for the next two weeks.  I am beginning go suspect his read my blog and knows I'm ridiculously hard-headed or that I'm not his first athlete. Probably, the second reason.  :-)
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Dr. Gombera did come into my room to see me.  He explained that they possibly could have saved my hip and given me a few more years, but I would find myself back in this same spot and they felt it wasn't the best for me.  I completely like Dr. G.  He's probably not even technically on my case anymore, but he came to see me all the same.

Dr. Mathews came in and told me I have the latest and greatest in hip replacements that he feels provide longevity without complications.  I have a ceramic, titanium device with the latest polymer for cartilage.  I can live with that.  Dr. Mathews has a hip replacement himself. You wouldn't think it is such a big deal but it is.  It's comforting to hear from the voice of experience.  They did reduce my substantial bone spur.  There was no getting around that, even with replacement.

 I have to schedule a two-week follow up visit with him and at that time, we set the date for the left side.  I'm not dreading it nearly as much now.  This isn't easy, but it's surprisingly easier than my previous hip scopes.  I hope it stays this way.  It took me a long time to mentally be ready to lose my own hips. I mean, I grew those myself. We've covered a lot of ground together.  I would have kept them and framed them if they would have let me.  But at the same time I'm glad to see them gone.  None of us are guaranteed even the next day.  I'd prefer to get as much out of life as I can and it simply wasn't happening with my own hips in place.
 One down, one to go!

Tuesday, April 1st, 2017
Post Op Day 5

Yesterday was a very rough day.  I'm not sure exactly what happened, but I woke up around 4AM and went downstairs to eat a little something leaving Richard asleep upstairs.  The next thing I knew, I was very ill.  Luckily, Richard heard me and came running to help.  He cleaned everything up and put me in the shower.  The rest of the day was spent eating very little, except some banana nut bread my friend Jody made us.  For some reason I'm craving it and cannot get enough.  By the afternoon, I was under control enough that my friend Christina was able to stop by.  She brought me some mascara, real woman mascara-an absolute indulgence.  I was delighted.  I was mostly delighted to spend a little time with her.  Diesel was even more so. He thinks all company is for him.  He's probably right.  He is pretty cute.  I made it through the day and slept 12.5 hours that night.
I woke up in much better spirits today.  Some of the swelling is starting to go down in my leg and I think my incision is top notch!  I can see this healing very well.  My doctor is not requiring I go to physical therapy.  I don't think he has any doubts I will aggressively, but intelligently rehab at home.  I do have some wonderful physical therapy friends that will keep me in line if I need it.

Someone did ask Richard today if I'll weigh more now that my hip is made of titanium, ceramic and a high grade polymer.  He refrained from saying, "No, but she might end up weighing more from all the banana nut bread!"  :-)  (J/K- He didn't even think that much less say it, but I did and it is pretty funny.)
Wednesday April 2nd, 2017
Post Op Day 6

Aspirin, even enteric coated, is making me seriously ill.   I can't handle the Aspirin which is the substitute for Xarelto.  Xarelto is a blood thinner, which with my insurance costs $342.  I've refrained from using my blog to discuss problems with health insurance and the medical industry, but consider this more common than uncommon. (Using medical insurance year after year teaches you a lot about protecting yourself and how financially devastating it is to need to use your insurance year after year.  I could tell your horror stories, but I'll save it for another blog and another day.)

My current plan is to take fish oil three times a day since it is a fairly effective blood thinner and ambulate as much as my body can tolerate.  It's a beautiful day in Southeast Texas. so I laced up my shoes, gathered up my husband, and let my dog take me for a walk.

Just when I was feeling like the toughest son of a gun on the block with my dog and my walker, my neighbor Danny came out.  Danny is visually impaired and a huge fan of Diesel.  I teased Danny about stealing my healing thunder as he came over to love on the dog.  I was a little fatigued and my energy rapidly evaporated as I stood there, but I am so glad I did.

It was a breathtaking moment.  If this picture isn't love I don't know what is.  It reminds me that in the middle of recovery, the battle to improve health and fitness in our community-which hasn't been easy, the struggles of chronic health issues and the horrors of medical insurance year after year after year, this exists.  No matter what else happens in life, this exists; and love is far more powerful than any other force in the world.

Wednesday, April 12th, 2017
Post Op Day 13

Today is my 2 week follow up appointment with Dr. Mathews at the Fondren Clinic and I am excited.  It is also my first time to be in a car since surgery. It's a bit of a drive to Houston and I was hoping I would handle it well.  I did for the most part.  I had a little car sickness, but nothing terrible.  For the most part, it was kind of great to get out of the house.  (You know it's time to get out of the house when going to the doctor sounds like fun.  :-))

They X-rayed my hip again and then Sarah, my favorite PA, came in to see me.  She's a whirlwind of efficiency and I can't help but get caught up in her energy and enjoy seeing her every time.  She took a moment to compliment me on my "huge quads" she noticed in surgery.

It was nice.  It also made me that much more determined to get back to being the mediocre athlete I love to be, as I mumbled something about them being much stronger in the past.  My mind flashed to the day before surgery when I scraped the crumbling 50 mile sticker off of my car.  No more ultras for me.

 Don't get me wrong, I'm grateful for the legs I have, but sometimes I can tell the difference in how they've changed since I can't be as active and it's hard.  My mind wants us to be the same person we used to be.  I suppose I'll have this battle with myself for the rest of my life now.

She sympathized with my desire to run, but reminded me it is basically off limits.  I was honest and told her I didn't know if I would be able to completely refrain, but I did promise her my attempts at running would be greatly reduced and wouldn't even begin until I've given my body 6 solid months of healing.  She smiled.  She's not approving my ideas, but she gets it.  She knows quality of life is important.

Then Dr. Mathews came in and showed me my chewed up femoral head.  It was actually GREAT to see.  It took away any doubts I had about the procedure.  It solidified and validated my years of pain.  Maybe I shouldn't need that, but being a distance athlete involves a lot of mentally overriding pain.   I should be stronger, it can't be that bad, etc.
The confirmation made me proud of what I have accomplished.  I've done all kinds of things like 100 mile cycling rides, a marathon, a few triathlons, one half IM swim, three ultra runs-the last one I DNF'd (did not finish) at 34 miles with hip pain. (HA!)  I did all of that with endometriosis, hypothyroidism, ovarian cysts, and a couple of bum hips.  Maybe I'm stronger than I think.

I'm not quitting.  I'm definitely not giving up.  I'll adapt and be happy.  My new hip is titanium with a pink ceramic head.  PINK!  I love it.  I'm grateful for it.  I can't wait to see what we can do.  But before I get to fire up, I have one more hip replacement surgery schedule on April 27th.  I'm almost there.

The sacrifice is real, but the gratitude is bigger.  I'm thankful for a strong surgical team.  I'm thankful for a future.

Thursday, September 3, 2015

Anthony Quinn: Running On Soul

I wrote compiled this article for the Southeast Texas Eventsbook in May of 2014 when Shelly Vitanza was kind enough to let me pretend to be a writer. The article is comprised of a candid diary written by Anthony's mother juxtapositioned against Anthony's answers about his life. The story speaks for itself. Anthony Quinn: Running on Soul
Anthony and his wonderful mother
Excerpt from Tony’s mother, Deborah Quinn’s Facebook note “G-d’s Voice”
My father was dying.  He had bone cancer.  Several days passed.  It was a quiet afternoon with Mark at work and Jared at school.  Tony had been napping in his crib and was just waking up.  I gathered him up, blankets and all, and laid him in my bed. I happened to think about a scar near his right eye.   I wondered if the scar was still there.  As my finger passed over the scar it was The Father’s voice I heard.  Not audibly, but as clear as any voice I have ever heard.  He said, “Only a mother’s love could find that scar.”  I never would have dreamed the storm that would shortly come. The things He told me, and taught me, were to become an anchor.  The lesson on that quiet afternoon would serve me well.

How long have you been running?
The 2013 Alamo City Run Fest in San Antonio Texas was my first competitive run.   They have an amputee division in that event and I finished fourth overall.  I wanted to return this year and win gold.

Preparing to run Pleasure Island Bridge Half Marathon
That was the only prayer I could pray.  I felt sure that the doctors were about to tell us Tony had cancer.  But what they couldn’t tell me was the thing I most wanted to know.  “Would my baby live?”
How old are you, where are you from?  Which sports do you play?
I'm 27 and was born and raised in Mauriceville, Texas.
Any sport a boy could possibly get involved in growing up in Southeast Texas.  My main sport would have to be basketball. My older brother, Jared, was always a star.  He helped win the 20-4A District Championship for LC-M in 1998.   I’ve always tried to be as good as he is.

Everyone always asks how we discovered that Tony had cancer.  In Tony's case it was discovered after an injury. He and Jared had been wrestling on the couch and Tony bumped his ankle against the coffee table.  The next day he was still wincing when I put on his shoe.  He started limping.  I made an appointment for the following day with our pediatrician. The afternoon of the appointment he fell while he was walking across the lawn.  He never cried that I remember, but he couldn’t support his weight.  His leg was x-rayed.  We were told the leg was broken, and that the x-ray showed a tumor- most probably benign, right above his left ankle. We were sent for a biopsy, which was inconclusive.  The cells they found were different from anything any of the doctors had ever seen.  We were then sent to M. D. Anderson Hospital in Houston.

How did you lose your leg?
I was diagnosed with Osteosarcoma when I was three and had my amputation some time around my fourth birthday at M.D. Anderson Cancer Center in Houston.

The room was very long, cold.  Mark and I walked across the recovery room to see our son.  I don’t remember seeing another stretcher in this massive place.  I suppose they were trying to give us some privacy.  Tony was still sleeping from the anesthesia.  He was pale, but breathing.  I looked down and saw how the sheet fell away past Tony’s left knee.  Saw the place empty where his ankle and foot should have been.  The amputation was over.  We made it through the day with the help of our friends and family.  And by the strength we took from Tony’s doctor, Dr. Jaffe.  We loved, and love, this man dearly.  He found us often during the course of that day.  He would look at us and say, “Courage my friends, courage.”   Just seeing him put steel in our spines.
Tell me about physical therapy.
Most of my memories of that time, and that's not saying a whole lot since I was three, had to do with being sick from chemo and not so much about physical therapy.  Since then, however, I have had a few revision surgeries on the bone due to growth and can speak more on that. I get a lot of questions about phantom pain but I don’t really remember it being that big of an issue for me. I remember feeling like my 'foot' itching once after surgery but that's all I can recall on the matter. One of the most frustrating parts of being an amputee in the beginning is forgetting you're missing a leg. I remember falling several times getting out of bed because I forgot I had to put on my prosthesis first. Landing on the end of your amputated tibia HURTS!

Anthony charging up the bridge 
As far as physical therapy, a very important thing that I was to do was help restore the nerves or 'feeling' to my leg. I remember this involved rubbing a towel on the distal end of my leg as if to dry. This practice was initially painfu, but eventually the nerves were restored. Standing up straight was also initially very painful because of all the blood going down into the limb. 

Crutches were a bit of a struggle for me. Primarily because I had to stand up straight to start, which, as stated was painful. Then I had to learn how to operate them. As it turns out walking on crutches with a missing leg is MUCH different. Also, there is a science to going up and down stairs on crutches and if you get the procedure wrong, well, good luck. The rest that I can remember in regards to physical therapy were basic leg strengthening exercises, balancing on those giant globe things, etc. etc. I am eternally grateful for the nurses, doctors and physical therapists at M.D. Anderson for their love and support during those times.

The day after the amputation would mean getting Tony out of bed and having him walk on crutches.  It was going to be horrible.  I knew it.  I also knew that I would have to be the bad guy.   And I knew he would fall.  It was as imagined, horrible.  I was tough, Tony was in pain and so tiny.  Four-year-olds should not be on crutches.  And he did fall.  And he was so angry.  Angry at me…for making him try.  And I was so angry with me.  I didn’t feel strong enough to do this.  Later that day, while Tony was sleeping and everyone else was gone, I sat in the window crying…angry crying…angry at everything and everybody.  And most especially, angry with God.

Anthony and his father
Who handled your life change the best? Good question. Probably me as I am sure it was an emotional thing for my parents to go through. I try to point out that because I was such a young age and don't remember too much that my whole experience with cancer, chemotherapy and recovery is really my parent's story.

I remember the colors, the children, and the parents.  I remember calling a friend, and being amazed that you could reach home by phone from this place.  It felt absolutely subterranean.  As if we’d crossed time zones and continents.  I was appalled at the brutality of this disease.  I can’t tell you how terrified I was, and we had barely crossed the threshold.  The house was a beehive…. activity everywhere.  Their bravery did not escape me.  Here were people cooking, laughing, playing, and talking.  It was as if children with disfigurements and IVs and wheelchairs and vomiting were all normal.  As if children dying were as common as a seashell lying in the sand.  

What’s your deepest, darkest secret about how this has changed your life?
I want to compete in the Paralympics, now. I want to win gold for the U.S. in both summer and winter Paralympics.

I remember a nurse coming in to tell us that they needed one more blood test.  I fell apart on the inside.  Tony was sitting on my lap while the phlebotomist drew the lab.  Tears were beginning to stream down my face, and Tony saw them.  After the blood sample was collected, Tony reached in the box and picked up a plastic flower finger ring.  “Here Mommy, for you” ...followed by a very sweet fish kiss.  This was the first glimpse at the strength and courage that God continues to pour into Tony’s heart.
When did you decide to live as fully as you can?
That question reminds me of that quote by William Wilberforce, "We were too young to know certain things are impossible... So we will do them, anyway." That's probably true in my case in that I was too young to know I was at any disadvantage whatsoever. I was always willing and able to participate in sports and be active. I was able to be active in large part because of Tom LeTourneau of LeTourneau's Prosthetics in Beaumont. He has given me the tools I need to continue to be active and confident in life. There aren't enough words that can express my gratitude for what Mr. LeTourneau has done for me over the years.
What was the most painful part of all of this?
Probably, the most painful part was the chemotherapy and being sick all the time. I remember throwing up a lot and having to deal with a pretty chest catheter. After I wasn't sick I was finally able to move on.

Day three post-op and I remember wondering what we were in for now.  Each day there seemed to be a new test we were expected to take.  Sure enough, the nurses announced that today would be the day we would take our child outside the building…something about becoming emotionally adjusted to the reactions of other people.  It would prove to be quite an experience.
I saw their reactions as we walked by them.  Tony in a wheelchair…Mark pushing, me walking alongside.  Lots of whispering, one man cried, most looked away only to look back when they thought we weren’t looking.  I was watching.  Lots of pity.  I hated it.

Where do you seek hope?
I'm very fortunate to have been brought up by a large and loving family. We had relatives, friends and church family that were all so helpful to us during that time. I have said many times that because I was so young I was just along for the ride and looked up to my parents and older brother. Now, I have hope that one day I won't need to put on my prosthesis. Meanwhile, my hope is in the many selfless people who are fighting to end cancer and those who are working day in and day out to help those of us who have survived live better lives.

I was walking behind Tony and Mark when I saw the bird.   The bird came round the tree and stood in front of us, cocking his head to one side.  We looked only to see that this particular bird was missing a foot and part of his leg.  Exactly like Tony.  The foot and left leg were missing in the same place as Tony’s. Tony said, “Mom that bird can’t walk anymore.”  The bird hopped within inches of us.  Tony was wide eyed.  “Mom, can I hop?”  “Yes, you can, Tony.”  Smile.  Huge.  The first in a long time.  “Mom, but he can’t run and play anymore, huh?”  At that, the bird hopped over to some others and they all began flapping their wings.  In Tony’s mind, they apparently were running and playing.  “He CAN run, and they’re playing with him.”
Tony’s still smiling.  “Can he fly, mom?”  No sooner had he asked, the bird flew, and perched in a branch just over our heads.  “He’s flying!”  I still was trying to believe we were watching this one legged bird when Mark said “That’s the scripture.”
“What?” I asked.  “
The scripture, flying, walking and running-it’s the verse from Isaiah.”  It was indeed.  A four-year-old wouldn’t have understood the scripture had you read it to him.  So here, God in His mercy played out the whole drama for him with a one legged bird.

How long did it take you to get your blade? How hard was it to learn to use it?
Because the prosthetics I had always used basically covered any activity, I wanted to do I didn't get my running blade until much later. The running leg that I currently use is the Ossur Flex-Run. It's not quite what the Paralympians use now but it the same type.  
It wasn't until 2013 that I discovered the Texas Regional Paralympics and began using it for competitions. I have to mention Texas Regional Games and Mrs. Wendy Gumbert for opening this amazing opportunity for me to compete in events with fellow amputees. Love you, Mrs. Wendy! Learning to run on one of these blades is extremely scary at first because you have no heel. The normal walking prosthesis that I wear contains features that help with balancing. Motion happens in several planes.  A small shift requires the cooperation of a complex network I don’t have in that area of my body. A running blade is made for going in just one direction and to do so really fast. I have to balance my speed and how far forward I lean just or I fall.  

I have only fallen once so far. Another issue is sweat. Sweat causes your leg to slip inside the prosthesis and if not addressed can come off completely. Dealing with this is important especially when running longer distances like a 5K. What's exciting about my upcoming running events, particularly, the Pleasure Island Bridge race, is that I am expecting a new one later this summer. It will allow me to run more smoothly and of course, faster.

People always try to add the moral to the end of the story.  I suppose it is an attempt to answer “why”.  People have said, “See, God allowed that in your life because He knew you were strong enough to handle it.”  I think it makes them feel better, as if nothing like this could ever happen to them because God reserves the hard things for the strong.  Yet the scripture says God chooses the weak things.  It says that we can do all things through Christ.  We all ask why.  Some are not brave enough to finish the question.  The question is “why me?  Why mine?”   At the root of question is a feeling of self-righteousness.  As if bad things happening to me/mine is an affront to my basic good nature as compared to someone else. The more I’ve thought about that question, the less I want to know the answer. Tony has taught me a better question.  “Why not me?”  You learn that question when you look into the face of a suffering child.  “Why not me?”

How did people react to you after your amputation?

I think my fellow classmates in Mrs. Tray's kindergarten class were curious about my situation but as could be expected their attention spans didn't last too long.

Best memories?

During my time playing basketball for Mauriceville Middle School (made the A-Team...that's right) I was able to use an already slipping prosthesis and flop for a foul (like a pro). I suppose it's hard not to call a foul when a player's leg comes off after contact. My happiest moments by far is when I have been in a wheelchair for a long period of time, usually due to revision surgery, and am able to finally take that first step again. It is an amazing feeling.

That is the answer I learned.  Yes.  God remains faithful.  I was so angry with Him.  I would be ashamed to tell you some of the things I’ve said to Him…accused Him of.   
I do believe that the things we experienced were the result of prayer.   Keep praying…it inspires a great God to place angels on elevators, weave dreams in the heart of a sleeping child and so much more. God sustains the flight of eagles.  He whispers, “Fly, child!” to the small and frail.

Does your blade have a nickname?
Nope. When I fall I usually call it a number of things though.

Talk about technology and its impact on amputees.
Technology is allowing not just amputees but individuals with all different kinds of physical disabilities. One of my favorite upcoming technologies is one that will allow certain amputees to feel heat/cold in their hands/arms. We are very fortunate to live in the times we do where technology is really taking off. I think the most important thing for an amputee or physically challenged individual to have is a good attitude. No amount of technology is going to help you if you have no zest for life. Once you make up your mind that you're going to fight through whatever it is that life has thrown at you then you'll be able to appreciate the advancements we've made in technology and comfort.

What is the one thing you want to tell the world about who you are?
I'm a believer in that whatever trials we go through that God still has a purpose for our lives.

There are times when He speaks not only to the place where you are, but also to the place He knows you are going.  …things that seem to have no bearing at present, but things you must know, must remember on the path that unwinds before you. This God of wonders gives wings even to the obviously broken of us.