The Game Plan

On August 2nd and 3rd, I went doctor appointment happy.  I had my usual appointment with my osteopath for my biweekly and bodily tune-up.  I scheduled a new visit appointment with a rheumatologist just down the road from me.  I saw my orthopedic surgeon, and then I finally closed the two-day doctor meetings with my nephrologist.  It was four doctors and then 4'11" ABC (American-Born Chinese) lady me with my bad attitude left hip to determine if I was finally going through with my left hip total replacement surgery. 

I was most intrigued and even teetered on excitement with the rheumatology appointment.  When I confided to my closest friend about this rheumatology appointment who had somehow fell naturally into the reserach role of all my medical options, she said to me: "But, you do not have Rheumatoid Arthritis."

I grinned and said: "Yeah, but get this...rheumatologists see patients with all kind of arthritis!  If only I had known this years ago when I was diagnosed with the avascular necrosis and osteoarthritis!"

Ever the cheerleader and support in my life, she said to me: "Mare, that is really good that you are doing the reserach and taking control of everything!" 

I glimpsed the picture of this gray-haired and thick-framed glasses rheumatologist on the Internet and imagined him telling me of some magical or miracle cure to undo the damage that the Prednisone steroid had inflicted on me or to wave a magical stethoscope that my left hip could finally be "normal" and rid of the blood supply cut-off death that had decayed my left hip joint.  Even now after 20 years of dealing with the Arthritis and Avascular Necrosis of my left hip, there was still a part of me that imagined there could be some kind of cure for my hip.  I was a dreamer.  I was the idealist.  I was holding on to invisible hope. 

The waiting room was tiny with magazines haphazardly scattered on one pitiful coffee table in the corner.  I had missed my lunch and was munching aimlessly on low sodium Veggie straws and celery sticks.   I refused to check the clock, though I predicted that at least a half hour had went by.  In one corner sat a woman who was in her mid 80's with a walker by her side and swelled and blotchy legs.  In front of me sat a woman in her 60's with platinum dyed blonde hair, puckered red-colored lips, and electric blue eye shadow.  And, there was me.  29-years-old.  The youngest one in the waiting room.

With a thick Irish accent, the woman with the swollen legs glanced at me munching loudly on my Veggie straws and said: "You know that this is the two hour doctor, don't you?"

I stopped in mid-munch and said: "Really?  Does he always make patients wait 2 hours?" 

"That's why I just called him the two hour doctor," she said with a chuckle.

I was tempted to check my watch, but didn't.  I knew that looking would just cause me to get into a mode of irritation and bordering anger.   I stayed occupied with my food and watching the Arthritis documentary with factoids and drug commercials that was playing over and over again.  Apparently, actress Kathleen Turner had rheumatoid arthritis.  Apparently, Osteoarthritis was the number one and most common form of Arthritis.  Apparently...I snuck at peek at my watch...I had waited there for an hour and a half. I could feel the bubble of irritiation blowing up.

Just when I thought I may get all huffy, a tiny Asian woman who had to weigh about one of my legs and with a broken Chinese-American accent said to me: "Mary Wu?  I am the doctor's nurse.  You are next.  Come on in."

There was the rheumatologist in all his gray-haired glory, but he appeared frazzled and in disarray with bleary eyes at a small laptop in front of him. 

He glanced for a millisecond at me and said: "I'm really sorry for the delay.  We are being forced to be upgraded to electronic medical records and it is just taking forever to scan and type everything in."

I was wordless.  The lights were dim and almost created a romantic ambience.  There were piles and piles of paperwork and folders surrounding him as almost a barricade or shield from whoever sat in front of him. Lucky for him that the person who was sitting in front of him was me.

"I have to say, Miss Wu, your medical records are really well-organized and impressive," he finally said when he tore himself away from the laptop and looked in amazement at all my copies of medical history, recent bloodwork, medications, and doctors. 

"Ohh...well, that happens, you know, when you've been dealing with health stuff ever since you were little."

"So, tell me what's going on."

So, I told him.  Everything.  His eyes were in a tug-of-war battle with his laptop and me, but I believed that I was winning when he suddenly interrupted and said: "Wait, you have avascular necrosis?  Are you bone on bone?  Because, if you are, then I can't do anything for you.  The only option is a hip replacement surgery."

"I don't know if I am.  I just know that this year alone has been a roller coaster ride with my body with lots of muscle spasms and pain." 

"Well, if you aren't bone on bone then the only thing I can think of for you are 'Synvisc Injections,' which injects synovial fluid or lubrication into your bones and alleviates the pain.  However, the injections are not FDA approved for the hip and would need to be prior-authorized with your insurance and then require an Interventional Radiology Department to do a ultrasound guided with local anesthesia.  When you see your orthopedic surgeon tomorrow, have him do an x-ray of the left hip and if it is not bone-on-bone then we can go forward with this option, as it really is the only option left."

I cringed in response.

Injections.  Local anesthesia.  Prior insurance authorization.  No, none of this sounded good at all. 

Before I could express my dislike and discomfort for this option, he sent me into an examination room and said he would be in shortly.  That is when I realized that I was already running late to my osteopath appointment.  My appointment with the rheumatologist was at 1PM and it was already past 3:30PM.  I had no choice.  I had to leave and go to my osteopath appointment.  I apologized to the rheumatologist's nurse and sped to my osteopath appointment who took me right away. 

The first thing I told her about was the appointment with the rheumatologist.  My osteopath shook her head, which made her honey brown locks of hair fly.  "You absolutely cannot get those injections.  They will not help you because your hip joint is beyond repair.  They are not even FDA approved for the hip.  No, I don't agree with him at all." 

I nodded in agreement. 

Somewhere between her fingers manipulating and trying to align my aching back, the lightbulb turned on and brighter than ever in my head that I had literally done everything in my power within these last few years to put off this hip replacement surgery as long as possible and have taken care of myself to the best of my ability.  My weapon to fight against osteoarthritis and my deteriorating hip was to stay active with swimming up to four days a week and and walking as much as my legs could muster before pain kicked in.  I utilized my external analgesics of Bengay and IcyHot that made me smell like the menthal and mothballs of senior citizens.  I had a lift and orthotics to support my feet and minimal walking abilities.  I rested periodically.  I had struggled to find that balance of moving, but not moving as Arhritis is a constant reminder about quality of life and living.   I was vocal against the fight against Arthritis as the leading cause of disability.  I was my own best advocate for myself and my ardent attempt to help others. 

That is when I made my decision.  That is when I knew my Game Plan.  And, that is whe the tension and stress that had built up in me in these pass few months began to fade in that examination room with my osteopath kneading my body that was as dull and hard as dry and floured dough.

"I know what I'm going to do.  I'm going to put off the hip replacement surgery until Spring 2013.  September is too soon with too much going on with friends visiting and organ donation and transplant speaking engagements.  My family is too preoccupied now.  The weather is going to get colder and the timing is going to be busier than ever with the holidays of Christmas and New Year's.  I want the weather to be nicer so getting to appointments and doing whatever I need to do will be better in the nicer weather.  Summer is too far away.  I can't go another year.  Spring is the middle ground.  In the meantime, I'll continue with these oseteopathic treatments, swimming, staying active, my creams, and I'm going to look into building outside of the shoe to alleviate the pain and try to get a doctor's note.  One of my good friends has already looked into the information, and I know you already have the standing X-ray that I took a couple weeks ago so the measurements in the leg discrepancy can be determined.  Once I have those measurements then I could go to a shoe repair place to try to build outside of the shoe.  Most of all, I am going to lose at least 10 pounds."

I paused for a breath.  Very strangely, I had never felt so calm, serene, and suddenly so scarily sure and certain of myself and my decision that this was the path I was going to take.  This was the decision I made and the Game Plan was just about laid out and set. 

My osteopath had been encouraging me ever since last year to get this surgery in September.  I held my breath, awaiting for her predictable shake of the head and disagreed disappointment, but she finally said: "That sounds good to me.  I'll get the measurements to you along with the shoe repair place as soon as possible.  I know that you are doing the best for you and your hip."

Just like that.  Three simple sentences of her actually agreeing with my very own choice that had mentally tortured and twisted my brain cells and my friends and family who patiently listened to my ongoing worries and concerns. The decision-making process, or any process for that matter was always more difficult than the final end point or conclusion.  I exhaled.  Relief filled me, and the weight of the decision I had fought to make was lifted. 

Two doctor appointments down.  Two more to go. 

I always looked forward to seeing my orthopedic surgeon because, quite frankly, he was cute.  He had these blonde curls, glasses (I am always a sucker for a guy that wears glasses!), tall at around 6'4, and had this sturdy and toned upper body and crooked half smile that made me swoon just a bit.  Surgeons are notorious for anti-social and lacking interpersonal skills, and this surgeon was definitely in the awkward category but many notches above the average surgeon with his smile and bluntness that was on the funny-gawky side. 

When I shared my latest with the rheumatologist and especially my bright lightbulb moment that I was going to seek at building outside of my left shoe as my last resort before surgery and that a dear friend of mine had done research on orthotists that specialize in lifting shoes to equal out leg discrepancies, he said simply: "Well, it sounds like you know much more about it than I do."

I chuckled and bit my usual sharp tongue from saying: "Well, duh." 

He said, "I'm with you on your game plan.  I just don't agree with the rheumatologist because your hip is beyond repair.  The injections will probably do more harm than help you in anyway." 

Then, the next lightbulb moment came that my orthopedic surgeon clearly did not specialize or know a thing about leg discrepancies.  His only job was "the carpentry job" of cutting open my left thigh in an anterior position, digging through my muscles to then locate my crumbled hip and saw it out to replace with ceramic on ceramic material that we could only hope would not squeak, stay durable, alleviate pain, and cause me to move and groove like any normal 29-year-old yearned for.  It was as clear as day that my osetopath was the gal that I had to stick with like glue with the shoe-building option.

My last doctor's appointment was with my nephrologist.  Out of all of my mainstream physicians, he was my favorite.  Out of all of my doctors, I somehow felt like he was the one that held everyone together, because everything always went back to the root or origin of my problems-- my chronic kidney failure and all the lifetime immunosuppressant medications that had taken its toll on the various parts and functions of my body.  He reminded me of my Father with the way he sat next to me to truly listen to me yammer on and on.  He meticulously checked my medications and the bloodwork I had to have done.  He updated me that the next pieces of the game plan was:

1) Lose Weight-- he gave me a business card of a nutritionist to see

2) Find a Primary Care Physician as she was going to be another go-to person who needed to give me medical clearance-- he gave me another contact phone number

3) Check about my blood pressure.  My blood pressure was on the low side and the wheels in his head were turning that maybe I should be off my blood pressure medication because perhaps it was the culprit for my fatigue and doing more harm than help. 

4) Indeed, follow-up with my osteopath on building outside of the shoe and obtaining a doctor's note for my workplace that I was going to live in a certain pair of shoes for the next six months to relieve the arthritic pain that hammered at my hip and to get my lower extremities in as much shape as possible prior to surgery. 

5) Keep up with swimming, light walking, and the balancing act of staying active, but not overdoing anything. 

I completed my last appointment with my nephrologist and truly all my other doctor appointments (with the exception of the rheumatologist) with confidence, relief, but, most of all, hope. 

I did not want to admit it but I had lost a great sense of hope in the battle to make my decision.  It was not until I gained all the details to make my Game Plan of my Decision that I realized just how anguished and hopeless I had truly been.  But, this is life.  Life moves in waves and the up, down, upside down motions of a roller coaster ride that makes us scream with fear and then laugh and cheer with gusto. 

The Game Plan is in motion.  I await my measurements and the shoe repair clinic details.  I forge forward with shedding pounds and alleviating the heavy weight burden that I have gained these past few months.  The appointment with the primary care physician is scheduled.  I do not have any regrets, and only look forwards, upwards, onwards, and beyond in the best, positive, and only way possible in this roller coaster of life. 

Keep smilin' until we meet again,

Mary

Acts of Kindness

My left hip has taken a toll for the worse. 

But, the newbie and unaccustomed physical pain that is now attacking and spreading like a slow-moving and vicious virus in my anterior left thigh along with the usual posterior and left side raw, tingling, and nearly electrifying pains do not even compare to the mental torture.  Such mental pangs leave me craving and needing a frontal lobotomy procedure to quiet the various voices of my family members, friends, and doctors in my head more so than the hip replacement surgery. 

The only voice that has been missing in action amongst the chorus of other voices is my very own voice and what I truly want and need for myself and my body.  I've been asking myself every single day and nearly every single minute:

"Mary, what do YOU want?"  or

"Mary, what do YOU need?"

and:

"Mary, you have FINALLY grappled with the biggest hurdle ever that you have to get a hip replacement surgery.  The BIG QUESTION IS: WHEN?! MAKE A DAMN DECISION, AND JUST DO IT!!!" 

But, every choice, action, and decision we make or take affects the people I love and care about the most from the decision-making process to the day of the surgery and then, finally, to the aftermath of rehabilitation and coming to grips with a replacement gal in me who has had a total of 5 kidneys and soon to be replaceable hip....and a patridge in a pear tree **chortling** 

No matter how many times people have turned into broken records and feathered, shrieking parrots to repeat to me: "Mary, you can't think about other people.  You only need to think of yourself," my overdriven mind that is a combined gift and curse can't help but see how the unfair and yet blessed cards that I was dealt with are hurting my family.

Sprawled on the couch at my parents' home face up and all snot-nosed and with fat tears rolling down my face on 4th of July, I said to my Dad: "I'm all set for the surgery in September, but I keep wondering what is it like to have these artificial items in my body?  What is it going to be like to have a new hip?  What is it like to supposedly NOT have pain?  I've been accustomed to my messed up hip for so long that maybe the doctor is right that a sudden change with this hip replacement surgery will have an adverse result rather than a helpful result.   It is the age old and ongoing question of do I get the surgery when I can't take the pain anymore or do I get the surgery to prevent all my other body parts from falling a part on me?  It is the age old and ongoing question of do I deal with the pain and what I know as opposed to dealing with something brand new that can be either really great or really horrible?"

Without waiting for my Dad to answer me, I continued to ramble on, "I'm realistic, you know.  I'm not worried and don't care about the surgery.  Cut me open.  Slice me up.  Pop in those ceramic on ceramic babies and bring it on.  I'm just terrified of the aftermath.  I'm scared of the rehab, depending on other people, how all of this will affect everyone else, and that, God forbid, something horrible is going to happen to my kidneys.  But, most of all, I'm scared of the weight and responsibility that my decision will bear on me and the people I care about.   Right now, you and all the other people I love and care about suffer from seeing me in pain, but what if I end up making you suffer more if the surgery goes wrong? If something goes wrong, I will be so furious and angry at myself and the world.  I know it.  I know I will.  The last thing I want to do is regret a decision that I weighed so heavily on..."

My Dad's lower lip stuck out like a little puckered baby.  The life lines on his face that were partly caused by me and all the health challenges that began when I was 7-months-old were crinkled and drawn together in deep thought.  He sat on HIS couch (no one else was allowed to sit there except for him) and finally said: "You have to go through the surgery with a positive attitude that there will only be a positive outcome.  If something goes wrong, we'll deal with it.  If everything goes right, we'll celebrate.  Whenever you are ready for the surgery, you are ready.  And, I'll be there in whatever way I can be, but you have to know that I'm no longer running on 8 cylinders.  I'm only on 2 cylinders now...."

That is when my petite and soft-spoken Stepmom stepped in and said: "Your Dad is getting older, too.  Your Dad has health issues, too.  This is what you should and need to do: Finish your book and publish it.  Lose weight, so you can be in tip top shape for surgery.  Take things easy, and lessen the load on your plate.  Look into building outside of the shoe or finding some level of comfort from now until the Spring when you should get your surgery.  The fact that you are having doubts...the fact that you are still so active and able to manage everything...the fact that you still thing about such activities and things to do means you are not ready for surgery.  You have to mentally prepare yourself.  The best time for you to have the surgery for us is next Spring or Summer anyway because of your Dad's teaching schedule.  That's it.  Case closed."

I only said to my parents as I looked between them back and forth like a pendulum: "I don't think my body can handle until next spring."

They just stared back at me, not knowing what to say.  Not knowing what they could say.  And, off was my mind to the races with knowing that I am choosing the hip replacement surgery, but not knowing WHEN without affecting my family and their lives and schedules.  Do I get the surgery in September?  Autumn.  Good season.  Beauiful season.  A season that I could recover in.  But, if I get the surgery in Autumn then what about the transplant event I was invited to in September?  What about my long-lost guy buddy in Chicago, Illinois who has had two heart transplants and a kidney transplant that I am supposed to meet in September?  What about my dearest friend in Argentina that is supposedly coming in October?  Is September too soon?  It is literally around the corner.  Then, September is going into winter and winter is not a pleasant time to deal with anything with my health....

Okay, then I thought, what about Spring?  Yes, Spring is warmer.  Yes, my parents schedules should supposedly be lighter.  But, can I wait and tolerate the pain that has hammered at me relentlessly this past year?  Can I do it?  Yes, I can do it if I have to for my family.  But, I don't know if my body can do it. 

Seeing my osteopath yesterday was the straw that finally broke my back.  I was absolutely dreading seeing her because she made her stance very clear that I could no longer avoid this hip replacement surgery.  I really did not want to hear her lecture, yet savvy coaxing that I had to go through with this surgery, because her words would only conflict with my parents who were making it abundantly clear that they were getting older and guilt washing over me that I was adding to their age.  On the car ride to my osteopath, the insides of my stomach churned with gut-wrenching twists.  I coached myself to not even mention the surgery and prayed that she would not mention it either.  My prayers were useless. 

She asked me: "You are set to get the surgery in September, right?"

I felt like I was in middle school again with being backed into a corner and ready to be given detention.  I stumbled and stuttered over my words about my parents' and their schedules conflicting with Autumn and that Spring was probably the best because the weather would be warmer.  I yammered on and on until my osteopath finally placed a firm grip on my wrist and she said: "You know how I feel about the necessity of you getting the surgery.  Focus on the Transplant Games that you are competing in.  Take everything out of your mind.  Wipe all the voices and opinions that you have heard from me, your parents, your friends, etc.  Let go.  You have time to think about what to do.  Your body will tell you.  You need to do what you need to do.  This is about you, Mary Wu.  No one else.  You need to do what is best for Mary Wu."

I whimpered pathetically: "But, I don't know what to do.  But, I don't have time.  Time is running out." 

Returning back home, my mind went from overdrive to out of control about my family and how my decision of when to get this surgery was going to impinge on their lives.  My thoughts were so out of control that I posted on my facebook status:

"Every decision and action we make or take has consequences on ourselves and others. Yes, I do believe in thinking before acting, but my brain is in overdrive. I so need a sign about what I should do. Either a sign or a frontal lobotomy will do. *sigh*"

I was officialy and incredibly fed up with my mind going mad with the vicious circle of thoughts, but then the acts of kindness from my friends (my Father does call them "my angels") stepped in like beacons of light. 

The first act of kindness came in a form of a long email from my friend for at least 20 years with the subject entitled: "I am Your Sign."  This friend had been with me when my first kidney transplant had went through complications, my second kidney transplant and an acute kidney rejection, high school, college, and now as we approached 30-years-old.  Out of all my friends, she knew how my mind worked, but she especially knew my spirit by saying:

"The longer you put off a decision, the more likely it will nag at you and you don't want to deal with that lone with your discomfort.  A surgery is a surgery, but when it comes to its success, half the battle is YOU yourself not statistics.  Mare, you are the feistiest person I know and if there is anyone I know that could have a successful outcome to hip replacement surgery, it is you.  You are tops in your game.  And, you are not alone.  Everyone loves you and will be there for you." 

I have yet to reply to her email, because I end up feeling all emotional and sentimental all over again when I read and re-read it.  She has been the one to give me a boosted reality check wrapped up in sweetness, sympathy, and support all in one. 

The second multiple acts of kindness has come from a close co-worker of mine who I have met outside of work to go book hunting happy.  She has literally listened to me carry on about my predicament without shedding one opinion when I've shared, made me homemade Cosmos in tinted $1 plastic martini glasses, and has been the one to pick me up and drive me around to our bookstore getaway.  The only words that slipped from her lips when I told her the latest back and forth fiasco was: "It is a tough decision." 

I can never thank her enough.  She has been the one to make me forget and escape from my thoughts for just a little while with laughter and a world of books, wonder, and old-fashioned: "Let me be there for you just to be there for you, and I will be there for you without saying one word.  Because I care.  Because you are my friend." 

Another act of kindness came from my peaceful and calm colleague.  I tried to explain my situation in with an analogy: "So, my body is like my toilet when it was having problems..."

"You are comparing your body to your toilet?" He asked with crooked, yet doubtful smile. 

"Yeah, do you remember when my toilet wasn't working? I think I told you about that. So, the toilet was clearly broken but still manageable whenever I lifted that little flap thingy on my own.  That one guy came to fix it, but he ended up making it worse.  The toilet ended up flushing every 10 seconds.  That guy said that my only option was to buy a new toilet.  I didn't trust him, went to another guy, and that guy ended up fixing the toilet with the right material.  Therefore, this is like my body.  Sometimes, you rather just deal with what you have rather than a whole new situation that could cause more problems for you.  And, then, sometimes it is a matter of having the right person with the right material.  And, although I trust my doctors, I'm not sure if a new situation is going to be a right situation when I've been dealing with the same situation and can manage it as I have been now."

He just stared at me with a bemused expression.  Going further into our conversation, he finally said: "It isn't an easy decision.  But, you have to do what you have to do for you.  For no one else.  Without thinking about other people.  But, you know what you should do is have a family meeting with all your calendars and then choose a date that works best. "

"That's not a bad idea," I said. 

I can never thank him enough for listening and providing that voice of logical reasoning and thinking.  As soon as he said that to me, I contacted my family saying that we needed to find the best date that would work so we could work together as a family. 

More acts of kindness have derived from my college friends who I met with a couple weeks ago in the sultry and steamy New York City heat.  I had not seen one of the college friends since I graduated from 2004.  She suffered from diabetes, and knew all too well about my battle for balance of craving to stay active and do all that I have to and want to do yet being held back from my worsening body.  She boldly told her parents: "Mary has a hip condition.  We have to get a head start to walk there, and she needs to rest periodically." 

I stared at her open-mouthed.  I didn't even know what to say.  When the walk to the restaurant began, she said: "If I'm walking too fast, just let me know."

After a 10-minute walk, I had to sit down.  My friend shocked me again when she said to the hostess at the crowded Italian restaurant that swarmed with overheated bodies: "My friend has a hip condition.  She has to sit down.  She can't wait an hour standing up.  Something has to be done."  She forced me to sit on the edge of a wooden seat until I eventually has to take over the entire seat.  My other college friend stopped to wait for me and gently put her hand on my shoulder when we were finally called to sit down after the hour-long wait: "Don't worry, Mary.  I'm here for you.  I'll take care of you." 

I was wordless and warmed in my body to such care, concern, and protection from my college friends.  I can never thank them enough for being my protectors and voice when my voice has been lost to ask for help and about my weaknesses. 

I think about these acts of kindness, and I wonder if I could ever be as patient, kind, logical, protective, and supportive as all my friends have been to me? 

These acts of kindness from people who are unrelated to me, yet know me all too well with my mind on speed, meticulous attention to all the details involved with the surgery and anything/everything else, and anguish from seeing my family hurting because of me.  These acts of kindness make me stronger and able to say to my family who I love more than anything in this world: "I'm going to be okay, because I am too lucky and blessed to have so many people here for me.  More than that, we are going to be okay, and we are going to get through this latest hurdle as a we and not just me."  These acts of kindness propel me to give back and give forward with more kindness than ever imagineable.  These acts of kindness from my doctors, friends, and my family make me understand that my aching Arthritis, deteriorating hip, and physical weaknesses force me to a role that is completely out of my comfort zone and that entails asking for help, depending on others, and being out of control.  It is out of my comfort zone that I am finding my voice and making my choice for me that, I believe, will only do the people I love and myself good in the long-term. 

So, yes, I can say that hip replacement surgery is going to happen, but it still hangs in a balance of WHEN. 

As my Dad said: "People in your situation have so much to teach the world and especially people your age about patience and strength."

And, as my osteopath said it best: "Mary, you've been strong all your life.  You've been the one to help and give to others.  You've been the happy one.  Now, it is your turn to ask for and get the help that your need and that your body is obviously calling you out to need." 

Finally, as the fortune teller in Taiwan predicted and said to my Stepmom: "Mary is going to meet and need a lot of people in her life from 28-32."  

Looks like the fortune teller was right on target, and how blessed I am with these acts of kindness from these "angels" in my life who are there and will continue to be there for and during my greatest and latest fight and feat to date.    

Keep smilin' until we meet again,

Mary :-)