Two shoes!

When you stop and listen, you hear amazing things. When you stop and smell the roses, you might just be greeted by a treat. When your glass is half full, you realize how far you've come. No situation is all good or all bad, nor is life. I choose to embrace my life, or at least fight like hell to get it back.

I may exercise much, much, less than I did 6 weeks ago, but what could you expect. At least I'm working out. My stamina, my endurance are slowly returning, I mark these things by how many blocks I can go on my crutches before gasping for air. My strength (upper body that is) slowly returns as I gauge my weight work outs. But more than any of that....

I haven't been in my wheelchair in 4 days!!! Yes, 4 days! I get around on crutches. Yes, for the next few weeks there may be events that will require the chair, but the bathroom door is back on, and the chair is out of my bedroom. Another piece of medical equipment has left too. I exalt in those changes, but even more...

I've put on two shoes for a few hours every day for the last three days. It's part of a desensitization plan. The foot feels less foreign through a shoe, or something. All I know is that the sight of my fat ankle in a shoe overwhelmed me. It is a milestone at 5 weeks post surgery. I'm amazed by it, even if simultaneously a little disturbed by my fat ankle. But I digress, two shoes!

Two shoes, one yardstick! I get better, stronger, closer to my goal everyday! Onward and upward they say!

Prisoner of my Own Foot:

I looked in the mirror this morning as I did my hair and the reflection is the same.  Maybe a little gaunter, definitely paler, but still the same bright blue eyes reflect back at me.  Straighten my hair, a touch of makeup and I look like me, the old me.  Everyone comments that I look so healthy.  I feel stronger every day, my brain becomes clearer as I wean off of the drugs. But I am not the same.  I get around via wheelchair and for a precious small time each day, crutches. Every action, every movement has to be planned ahead, I feel like I am a Prisoner of My Own Foot.

This morning I awoke to bright sunshine and the crystal clear mountains, and every fiber of my very being longed to jump on my bike and go for a long ride, or strap on my running shoes and run; but I can’t. Not yet at least!  This foot holds me prisoner still. That thought caused me to throw the covers over my head and burrow into my bed.  Still self-pity isn’t my style, so I settled to sit on the porch in the sun and enjoy my coffee.

Last week, I didn’t leave the house for 4 days, for 4 days! (The only exception being my daily 20-30 minutes wheels around the block with Sadie)  This is me, homebound, no! I reject that with my very soul.  I am learning patience, I am doing a puzzle, reading a book, filling my time, but still…. My foot controls my day!

I watch my ankle heal and with each day it looks less like an alien and more connected to reality, to a foot that I mostly can’t feel, yet one that controls my every move every day.  I want to hate it.  I want to scream at it, or scream at the universe, but I can’t.  Every night after I give myself my nightly shot and take my meds, I lay in the darkness and mutter a silent prayer that the nerve graft will work, that I will feel my foot again. Then I pray that if that doesn’t happen, if a half dead foot is to be my life, I will learn to run on it. I will learn to ride my bike again. It is a prayer so desperate, that I will only whisper it in the night.

I meditate on these thoughts as I fall asleep, and as each new day dawns, I fill my time and work on preparing the rest of my body to help in this battle.  My strength physical and mental will free me from my jailer in time.  Whatever the outcome is to be I will only give this jailer, This Thief, a limited time, and then I will free myself.

I will not be a Prisoner to My Foot for long, forever! To this promise I will be true!

Back in SoCal and Thanks to Great Friends Near and Far

So, my time in New York City has drawn to a close.  I don’t think any of us were sad to leave that frozen island this trip.  New York City was not really made for wheelchairs, especially in the cold.  Plus, I felt too awful most of the time to be up for much anyway. Although the last week was actually filled with visits from college friends and a dinner with one of my cousins to add fun and laughter to our time and make us feel connected to the world.

Still we all wanted to come home, though I dredded the flight.  The flight was less horrible than I feared and once we were off the plane we were greeted by the beautiful mountains around Burbank, sun and warmth.  I quickly shed my jacket, my sweater, my scarves and soaked up the sun.  Loaded in the car we journied to Casa de los Padres, where I will be in residence until I can handle the stairs at my home.

Within moments of arrival as CdlP, we were greeted by the most beautiful of sites; one friend returning Sadie to me while other friends arrived with dinner.  They were all shocked when we suggested a bottle of champagne to celebrate our safe return and the beauty of friendship.  We then feasted on the amazing meal they provided, a gift so great all you can say is thank you. Then you can only hope that when a friend needs that kind of gift you’ll remember to pay it forward.

By the next day, I needed to see my house.  (OK, I needed a few items from there too, but I really want to be home, so we went by my house).  I’m allotted 4- 30 min periods upright, so I saved one to tackle my stairs. I stood at the bottom and contemplated the flight and a half of stairs.  Daunted, I began the task slowly and step by step, I made it to my first floor.

I enjoyed visiting with my new roommate while my mom gathered my things and I ached to be back in my home, but not yet as evidenced by my mild difficulty getting back down the stairs.  So, I will continue to enjoy the hospitality here at CdlP, and work on my strength and healing under my parents careful eyes.

This regimen of working on my strength has gained a new component, daily wheels around the block in opposite directions with Sadie.  I’m here to tell you that this activity is no joke, wheeling a wheelchair up hill by yourself .  Anyway, I put Sadie on her leash, attach the leash to the wheelchair and off we go.  When we really get going at times, Sadie helps. She gives me an indignant look when she realizes her duty as a sled dog, but I’m training her.

Thus life will continue here at CdlP, I slowly get stronger, sleep long hours and watch my ankle heal.  Please come visit, Pasadena isn’t Siberia!  Today it is absolutely beautiful!

When you can't hold yourself up!

Yesterday, I stood up for the first time in 3 weeks.  Stood upright, just like us Homo Sapiens are supposed to. Enough of this upside down, backwards crab crawling from bed to chair, to wheelchair.  Enough, of this sideways slide from chair to chair.  Those manuevers may have been had a benefit in ensuring that my triceps didn't dissolve the way my gastroch have, but I am humankind and we are meant to travel the world upright.  That is how we evolved to be superior to monkeys, also how our homes, streets, sidewalks and vehicles are designed but alas I get ahead of myself....

My plastic surgeon has been very strict about keeping my foot elevated at all times.  As I have no more veins, lymphatics or functional nerves on the inside of my ankle to deal with the pressure of gravity.  Thus, I have been relegated to the seated or reclined position since my surgery.  Yesterday, in his office, he tested my foot in the dependent position. I sat upright like a normal person with my foot dangling for 15 minutes, and my back rejoiced at not having my hip tilted at some odd angle to keep my foot up.  As long as the foot didn't turn purple, I'd pass the test. If I passed, I'd get to begin brief periods of having my foot dependdent.

I passed the test!  My prize, crutches! Oh crutches, I have had a love hate relationship with you in the past, shall we begin the dance again? At this moment, you feel like freedom, but I know shortly you will be a jailer again.  Thus the ying and yang of healing! Still today, you are freedom and thus crutches in hand, I stood up.  I got a little dizzy and realized I hadn't been completely upright in 3 weeks.  Woa, folks this is going to take awhile.  Still, there is progress.  I may still primarily depend on my wheelchair to get around, but this am during my allotted upright time I was able to brush my teeth and wash my face over a sink!  Progress, my friends progress!

The world may be built for us to travel it upright, but I have learned that people are very nice to you in a wheelchair, even on the Manhattan's Upper East Side

The Sacrament I Never Wanted

On Sunday, I received a sacrament. It wasn’t planned, arranged,or organized. It just happened.  I remember my First Communion.  I had to buy a dress, there was a party. A big deal was made! In CCD, we spent a year or two preparing for our Confirmation. I had to pas a test with our monsignor to prove readiness, my dad sitting next to me. I remember being nervous. I had to pick a sponsor, there were practices.  These milestones, in my life as a young Catholic, they were big deals, signs of maturing in the church.

Through the preparation of those milestones as a child, I’d learned about Annointing of the Sick (Last Rites, as it used to be colloquial called).  The image in my brain was of a death bed with your family gathered around you before you peacefully died.  "Call the priest, there is nothing left to do."  Isn’t that the idea?   So, even though I’ve been living my life as a cancer patient for four years (however, much I may want to deny this fact), I’ve never considered seeking out this sacrament.

So, I innocently went to church Sunday and lo and behold, it was a special mass for the sick and they were offering the Annointing during the mass.  My dad pointed it out to me. I considered the situation, sitting in my wheelchair in the aisle.  According to Doctrine:

The anointing of the sick conveys several graces and imparts gifts of strengthening in the Holy Spirit against anxiety, discouragement, and temptation, and conveys peace and fortitude (CCC 1520). These graces flow from the atoning death of Jesus Christ, for "this was to fulfill what was spoken by the prophet Isaiah, ‘He took our infirmities and bore our diseases’" (Matt. 8:17).

Well, I can use all of that.  I mean who can’t when dealing with something serious.  Right? However, this sacrament used to be called “Last Rites,” and I’m far from needing that!  I may be knocked down a little, I may not be running for awhile, but I’m far, far from needing “Last Rites.”  So, again back to doctrine:

Does a person have to be dying to receive this sacrament? No. The Catechism says, "The anointing of the sick is not a sacrament for those only who are at the point of death. Hence, as soon as anyone of the faithful begins to be in danger of death from sickness or old age, the fitting time for him to receive this sacrament has certainly already arrived" (CCC 1514).

“In danger of death,” not sure I can accept that.  That sounds a little like being sick.  I’m not sick, I don’t feel sick.  I don’t act sick.  Yet, I cannot deny that I have an illness.  I do not, nor have I ever felt in danger of dying from my tumor.  My fear, my reality has always been a loss of function, the looming potentional of a loss of limb.  That may not be “danger of death,” but it is big and horrible to me.  Therefore, if receiving the sacrament can give or help me to find any “peace and fortitude” against that reality or even my current wheelchair ridden one.  If I can have help avoiding “anxiety, discouragement, and temptation,” as I face my current struggle.  Can my faith help me with these things?  

So, I received the sacrament.  The priest anointed my forehead and my hands, he prayed over me.  My parents and a dear friend witnessed.  It felt real even if it was without pomp and circumstance.  I may never have wanted this sacrament, but I’m glad my dad decided we go to that church on that Sunday.

Formula for Crazy

I sit at the kitchen table, listening to the sounds of NYC, looking out at my limited view, wishing I could lace up my running shoes and head to Central Park.  Oh how I wish for that.  Actually at this point I’d settle to just be able to walk to Central Park.  Wait, I might even settle to be able to go there on crutches.  (Hmmm, given the ice on the street that might be dangerous). OK, so let’s be honest, I’d settle for any form of locomotion that would allow me, ME, to control my destiny,  ANYTHING that would allow me to regain some independence. 

It’s been two weeks since I woke up in the PACU at Memorial Sloan Kettering and asked “what happened to me.”  In that time I have been getting better and stronger every day.  I have tried to be a good patient, even if I have the most conservative of plastic surgeons.  He ordered 7 days of complete bed rest with my foot elevated at all times, and there was no wavering.  At the end of that, he says 2 more weeks of chair privileges, as long as the foot stays elevated.  He won’t let me have crutches to prevent any cheating.  OK, OK, I’ll listen.

All of this leads me to the following formula….

How To Make a Highly Independent Somewhat Type A Person Completely Insane:

Step 1- Take away their ability to do anything for themselves-  Seriously, for awhile, it was ANYTHING.

Step 2- Take away the ability to do any real form of cardiovascular exercise

Step 3- Have them in constant, severe pain

Step 4- Throw in pain drugs that limit their ability to multi-task and fog their brain's functioning

Step 5- slowly and progressively deny them their personal dignity

Step 6:  Assign them a loud, whiny, intrusive, anxiety riddled roommate who leaves their TV on all night to deprive said person of a good night’s sleep for days on end

Step 7- Have their cell phone die so that they can’t even contact the outside world

Step 8- do all of the above while it is freezing outside and the sidewalks are partially covered in ice

The antidote to the above insanity inducing actions:

Step 1: Laugh a lot, laugh often, laugh at nothing, just keep said person laughing because while laughing the insanity can’t possibly build

Step 2: Lots of visitors, visitors are essential to step 1, but also to break the monotony

Step 3:  Messages from friends and family so as to not feel completely disconnected and forgotten in their own world

Step 4:  Activities to pass the time, puzzles, card games, good books, etc.

Step 5: Allow uninterrupted sleep once finally out of the hospital

Step 6: Exposure to sunlight and fresh air at least once a day even if such air is freezing

Step 7: Good friends to take care of their dog and home so as to not have to worry about those things

Step 8: Continued support, prayers and well wishes from dear friends and family whether near or far.

Step 9: After getting a new replacement phone in record time at the Apple store, run into a guy who holds the elevator for you saying “I spent 5 years like that,” and admits he also used the shark attack tale.

Step 10:  Get back to sunny SoCal (and my Sadie) as soon as possible!

A special thanks to all of you who have helped with the antidote over the last two weeks, you are all very dear to me and have helped in ways small and large.  It has been a long rough road so far and so much left to go, but I make progress every day and I know that I couldn’t forge my way along this road alone.

The simplest of things, the most profound of emotions

11 days ago at 5am, I stood in the shower taking my prescribed preoperative, disinfective shower. As I stood under the stream of water, I thought of what was to come. I worried about the possibility of losing sensation to my foot. I worried about the loss of active lifestyle.  However, I set my mind to be positive, stay positive, fear would not rule my emotions nor my recovery. I set my mind for this journey, for this fight whatever was to follow.

We all know the story now they opened my ankle, and it was obvious that the conservative option wouldn't work. She talked to my parents, got consent, and proceeded to do a wide excision. Pathology later confirmed that this was the right choice. The tumor had invaded the nerve and my old skin graft. This explains the numbness and nerve symptoms that have plagued me for months. A good decision was made, the chance I may not have to do this again. I only cried once when my best friend came in to see me the next day. I've been determined to stay positive, stay the course, to confront this and deal. To make my new reality fabulous, maybe even better than the old one.

So I spent 7 days in bed, my leg has not been below my hip in 11 days. Discharge prep began... My parents have been analyzing the bathroom in the apt to see how I could get in and out of it adn the shower from my wheelchair. We've discussed this with my OT, Mary. Then this morning, when Mary came to check on me, I asked again. She went and looked at the shower and said, let's see if you can shower here.... OMG, i said really? I called my dad, "can you bring shampoo over like now, I'm gonna shower.". My dear dad got dressed in 5 seconds flat and hightailed it to the hospital.

With Mary's help I made it into the shower, we high fived, and I smiled a true genuine happy smile. Since I made it there, she went to get the stuff for the next step, and I sat on the shower chair in my hospital gown, and all of a sudden it was too much. I started to sob, the tears just fell from my eyes, I couldn't stop. Something, so simple, something we all take for granted, a shower reduced me, ME, to tears. But it was so much more than that, so many emotions, they just flowed. I finally released myself to let it out. For a minute or two, that was all I'd give it.

Done with that I proceeded to take the most amazing shower of my life even though Lefty was propped up on the armrest of my wheelchair. It didn't matter. It was a simple unexpected luxury that I vow to never take for granted again.

Now, on to getting the heck out of this hospital!