I survived!

I survived 7 days of bed rest. I'm still not sure how, but I'm sure that being run over by a Mack truck, lots of pain meds, my parents and some good friends have had something to do with it. Still when friday morning dawned, I was like a kid on Christmas morning. Every delay seemed forever. I just wanted out of bed! Even if I couldn't lower my ankle at all, even if I couldn't put any pressure of lefty. I just wanted out of bed!

Mission accomplished! I worked with my PT and OT to sort out how to do this safely, effectively, alone when need be. Skills mastered! It wasn't much, but getting to a wheelchair meant i could leave this room.

For the last week, my parents and i have played near daily games of gin rummy. Today I wanted out, we put me in the wheelchair and left the room!!! I wouldn't let them wheel the chair, i wanted to move of my own accord. We went up to the family rec room and played our game.

Away from the other side of the curtain, and its new inhabitant, we were able to joke, jab, roast each other as only families can. No one else was up there so we didn't have to be quiet. After about a half an hour the rec room volunteer came over and said. "This is a table filled with love and some really FUNNY people.". Yep, that sounds right!

It felt great to have new surroundings, to get to laugh like that. To see the NYC skyline and the snow filling the terrace. Today was a good day! Tomorrow maybe might even be better!

This time IS Different!

Before I left for New York last weekend, i complained of feeling the worst kind of deja vous. I was packing to return to New York 4 years and about a week after i made this journey last time. I know that i am not the same woman who started this road 4 years ago, yet still there was a fear. A fear that was real, even if I barely spoke it, of going backwards..

The lasting legacy of my first journey with ankle liposarcoma, is my health revolution. Making working out, triathlons, healthy eating and lifestyle an active choice for me everyday. Would prolonged bed rest undo that? Would I develop a fatalistic attitude that said that it didn't really matter? The few times i spoke these fears aloud, my friends pushed them aside, saying "Lisa, that's not you anymore." "you won't let that happen." still the fear was extant.

I talked my way into to getting to use the gym in NYC. I worked out right up until the night before surgery. I believed, but i worried.

A few days ago i asked the plastic surgeon if i could do some seated exercises while on bed rest. He said, no! Defeated, I didn't ask again until today. My OT said she'd work on it for me. Two hours later she returned with resistance bands. I was cleared! I exclaimed it on twitter, texted a friend, and did a quick 40 minute resistance band work out. It was easy, cause she didn't bring me the strongest bands, but it felt so good. To feel my muscles respond. to know that this fear could be relegated away from the forefront.

Thus, any lingering doubt about whether the new Dr.Lisa is here to stay is gone. I may be weakened, i may have sustained a blow, but I'll better it and be better for it. Somehow!

The Other Side of the Curtain

When I checked in for my surgery on Friday, the financial lady asked me if I'd like a private room. I had memories of my hospital roommates being up all night gibbering away with loud accents, of them snoring all night despte their sleep apnea/biPAP machine, and memory of mysteriously getting moved to a private room post my skin graft and actually getting some sleep. So, I said yes I'd be interested. Then she said, I'll need your credit card as it's $500 extra a night. *Cough, sputter, gag, um no thanks!*. The happy thoughts of a blissful recovery dissolved.

Therefore, i have a hospital roommate again. When I got wheeled into my room after the long night in the PACU, she introduced herself through the curtain. "Hi, my name is S. I have brain cancer how about you?". I replied "Nice to meet you, my name is L. I just had survey for cancer in my ankle.". Thus, the odd relationship through the curtain began.

It is an extraordinary thing. You take two people, two families, two social networks and throw in a mountain of stress, a flimsy curtain, some drugs, and a lot of pain and see what comes out. That there aren't frequent brawls might be amazing. But most people just live and let live. Most just accept the parallel life going on on the other side of the curtain.

We are privy to intimate details that no stranger should know about another person becuase there is simply nowhere to go to maintain true privacy,. I'm on complete bed rest, so i really can't go anywhere. She had a consultation that by all rights should be private, but I couldn't leave the other half if the room. My dad went and got coffee out of respect. I put on my noise cancelling headphones. It seemed only fair.

Although, at points yesterday while she prepared for brain surgery today, I didn't think I'd survive her visitors, all in all general courtesy still wins out. Her husband helped with some of the banal tasks of daily living i cant handle (closing curtains, or turning on a light, etc.) They really are very nice people, extraordinarily scared at what today holds. I understand this. I know this fear that can be palpable, it can be paralyzing. She went to the OR this morning for brain surgery. I wished her luck, told her I'd pray for her. She may come back here, she may not. I may begin the dance with someone new you never know.

I wish good luck to the Lady in the Other Side of the Curtain!

Update!!!

*Please note not for the squeamish*

So, my surgery on Friday was to remove the recurrence of my round cell myxoid liposarcoma in my ankle. The plan heading into the surgery was to be somewhat conservative and try to spare the nerves and vessels in my ankle. Thus, giving me the best chance for the best function, accepting a small increased risk for recurremce.

However, when they started operating it was obvious that that plan wouldn't be possible. So, they moved onto plan B, sacrificing the nerve and artery. The plastic surgeon performed a nerve graft and then transferred a free skin flap from my thigh.

Although this isn't what I had hoped for, everyone is positive that I will have a reasonable functonal reponse in time. Plus, there is a higher likelihood that all the tumor will be gone this way. Therefore, I'm growing to be OK with it.

While yesterday I said it felt like I was hit by a Mack truck, today I have some of spunk back! Intakes a lot more than this to hold me down!

Leap of Faith, a reprisal

I went skiing for my birthday last month.  As I stood on the top of the Cornice, I looked out into the distance, and as I often do, I was amazed at the beauty of the mountain ranges before me. The wind wasn't howling, so I paused and soaked in the beauty of what I was looking at.  The distance so clear, so sharp, so magnificent.

Then I turned my attention to the lip of the Cornice.  Skiing off that edge is a leap of faith I've written about before.  To make that first turn requires complete focus and trust in your own skills and strength.  To go forward into that which you can't see is always a little scary.  You must be in the moment, completely in the moment, so that you can deal with whatever the mountain throws at you.  The first time you ski into the abyss, the conditions are unknown, you may have to make slight adjustments.  What if someone falls before you, what if you hit ice, what if??  You could go crazy if you play the what if game.  Therefore, I take a deep breath, and I go.  I know I can handle whatever is thrown at me because I have before.  I believe in my strength. I love the ride.

Yet, last month I had a slightly different thought.  the distance was so clear and sunny.  The immediate slope was in the shade, and was unseen.  It felt a little like my life.  I look at a year from now and I know, I'll be OK.  I don't know exactly what my reality will be, but I know I'll make it OK.  Yet, my immediate present is scary and unseen.  Still I can't stand on the ledge and not move.  Therefore, I must take a deep breath and go forward.  There is no choice.

Tomorrow I will have surgery, I don't know exactly what that surgery will entail, but I trust my surgeons.  I have been down this mountain before, but the conditions are always a little different. I know I may hit ice patches in my journey, but I have faith in myself and my amazing support network.  So, I will turn off the ledge and find my down the mountain so that I can make it to the distance.  That distance that is so bright and sunshiny.  I will get there somehow!

The worst kind of Deja Vous

A little over 4 years ago, I was prepping to go to New York for surgery at MSKCC on my ankle.  Now a few days over 4 years later I'm doing the same thing.  Preparing to go to New York, I am reminded of how I came to this decision, I am reminded of how this nightmare began.

I described my original decision to have treatment at MSKCC, where they were willing to given me an Option 4.  This is not a question I have the emotional capacity to question right, it is what it is. I trust my doctor there, I trust the staff.  Also, in a weird way it has kept my life as a cancer patient there, away from the rest of my life.

This morning as I cehcked more things off of my To Do List and then headed out ot the gym for a  quick 1.5 hour workout, I was reminded that while yes, so many things are frieghteningly similar as the last time I did this, still I am not the same person I was 4 years.  I am stronger, physically and mentally.  I am 70 lbs lighter.  I have found a faith in myself.  I know that I will get through this even when I have my days that I just want to curl up in a ball.  Can you blame me?

Alright, back to work young lady- cracks the whip!

Escapism!!

The #SunBowlRoadTrip represented a journey to watch our college football teams play each other for the first time in 20 years, but also it was an escape from some of the serious issues going on in my life. 

As we drove away from Los Angeles I felt myself lighten, some of the burden I was carrying seemed a little less.  I didn’t care that we were to drive until 4 am through the desert.  For 4 days I didn’t have to think about what January held and I embraced that.  We laughed, we laughed at stupid stuff, we made fun of each other.  We taunted each other about our teams.  Occasionally we’d touch on the serious but we’d back away. Port-a-potties on the border were funnier.

Sunday morning as we had breakfast, we both wanted to stay longer.  To linger in the lovely Phoenix sun (that was actually not hot) and drink mimosas and pretend that reality didn’t exist.  Alas, our pragmatism kicked in, and we began the last leg of our journey home. 

With every mile closer to our home, I felt a little of the weight return to my shoulders.  After we crossed the border into California, it seemed real.  A few hundred more miles and I couldn’t pretend like my reality didn’t exist anymore.  I couldn’t take it any longer. So, we got off the highway and followed a dirt road to its end, and had a picnic.

We enjoyed a few last moments in the great expanse of the Southwestern desert.  Nothing around us but tumbleweeds, cacti, the mountains in the distance, the blue ski above and the distant sound of the freeway.  It seemed idyllic.  We lingered longer than we intended.  I fought the urge to say screw it, I’m staying.   Still, I’m too pragmatic, too realistic about the importance of what I need to deal with. On my days off since, I’ve fought the urge to drive back to the desert, but there is no more time for me to bury my head in the sand.  Reality is here now…

What’s so scary?  Several months ago, I learned that the cancer in my ankle that I dealt with 4 years ago had come back.  Initially, there was fear I’d have to undergo amputation, but after more tests, we’ve agreed to give me one more chance at conservative therapy.  One more chance to keep a functional foot.  My surgery is scheduled for 2 weeks from now.  That reality is what it is.

My recovery will be long, but hopefully cleaner than last time.  I started blogging because of this, so it hasn’t seemed right to not blog about it, but I wasn’t sure if I should write here or go back to The Tale of My Left Foot.  For good or for bad, I’ve decided that I want to stay here.  So, I’m finally ready to start admitting to my reality. Its time to face it.  Thanks so much to all of you who have supported me.

Still, I really want to return to the desert.  Can you blame me?

The Lure of the Open Road

I have loved road trips since I drove to college with my old roommate.  Those trips from LA to South Bend and back are great memories.  Memories of camping in the Bad Lands, visiting Mt Rushmore, camping in Arches, visiting friends along the way, and laughter always, always lots of laughter.  Those trips were part necessity (we had to get from here to there, and we wanted a car when we got there) and part fun.

In real road trips the journey is as important as the destination and the company trumps all.  I've done my fair share of roadtrips in my life.  I have driven round trip from South Bend to South Padre Island, Los Angeles to Vancouver, Canada, LA to New Orleans, hwy 1 to the wine country and then back via Vegas, and most recently LA to El Paso.  I've done one way road trips LA to DC, and Chicago to LA.  All of these trips are special memories to me.  All of the friends who joined me on them dear.  There are only certain people that you can sit in a car with for days and days on end.  If you survive the trip with your relationship in tack, then it is golden and hold on for dear life.

What is the lure of the open road?  Why does it draw me so.  It is a unique way to see the country that we usually bypass.  I remember driving through South Dakota fascinated by the rolls of hay in the varying angles of the sun.  As that was pre-digital cameras, I have about 30 pictures of rolls of hay or grass or whatever.  Is it getting to decide that since you're here you just must see Devil's Tower (which mind you is near absolutely nothing), or Mesa Verde (which was how I was paid back for the Devil's Tower sojourn).  Or is it deciding that you should visit the meteor crater in the Arizona desert because its there and so are you.  It is all of these things, and I'd almost forgotten how much I love it.

I got home yesterday from my well documented road trip to the SunBowl in El Paso, TX to watch my Notre Dame Fighting Irish beat, my friend, Jennifer's Miami Hurricanes.  Sure we went because we love college football and our teams, former rivals were playing each other for the first time in 20 years.  Yes, the football game was the reason, but in part the roadtrip was a draw.  The game, while I'm happy with the result wasn't really a good football game, and it was COLD, even for the ND girl.  The roadtrip didn't disappoint.

Driving through the night to get to ElPaso in time for a few hours of sleep was a feat of hilarity, well documented on twitter and posterous.  The trip home included a trip to the border, just because Jen was fascinated with the border and border patrol. We marvelled at the beauty of the southern NewMexico we had driven through in the dark of night, we enjoyed sunsets and stars. We gained a new appreciation of tumbleweeds, and we laughed.  We pretty much laughed for two straight days.  Some worried whether we'd make it home friends, no need to worry there.

The Lure of the Open Road, I don't know what it is, but I know I feel it and I can't wait for my next road trip with a funny friend.