10 years

What a substantial amount of time...

SO much can happen in 10 years that you cannot even fathom... Just the sheer amount of possibilities there is to come in that amount of time...

I was reminded today of that amount of time that is from a friend that had cancer and limb salvage surgery the same time I did. We don't talk as much as we used to, but I still check out what he is up to from time to time on Facebook.

I was reminded that my bone replacement would be up for another replacement soon... and that made me a little sad... not for missing my leg... but the thought going through all that rehab and pain all over again...

That being said, my friend did a million times better with his replacement than I and I know he will do great things with his new and improved replacement that will now last him 30 years (with the new technology that has come out).

But it still crosses my mind... would that have all been worth it for myself? When I first found out I had cancer again I was so against removing my leg... I didn't want to be disabled... I didn't want to be THAT different... but... would I have even lived to see the 10 year mark of my bone replacement?

Why are we so attached to something that disables you more? To be normal? Life is hard and SO annoying  at times with 1 leg... but what was the alternative? A life of painkillers, pain, limited mobility, and the unnerving possibility of cancer returning/spreading and eventually not living to see where your life was going to take you...

I really deeply thought about it and realized there is no way of knowing who or where I would be right now if I hadn't lost my leg... and that is OK... because the what ifs will just drive you up the wall...

Your life is here and now... and anything that hinders you from living it is not worth your thoughts, time, or effort...

The cure

I sometimes think that when a cure for cancer is finally found, I am going to feel more bitter than happy about it... is that wrong? Is that ok?  Is that human? Is that selfish?

Yes to all of those questions... we can only grow from the experiences we have and the history we have made for ourselves..

We can only move forward... hope to look back... be mostly proud... mostly happy from what has happened in our lives and what we have accomplished...

Even if there is still a twinge of hurt in the middle of all of it... that's how life keeps moving forward...

There will be things that we will miss out on, and the gauge of your success is your content of your own future and past...

So I will sit here and wait... and whatever feeling I have on that amazing day will be ok... because I am happy and healthy and really, that's all that matters in life... and that's what I try and tell myself every day...

Are you OK?

Weird weeks make you wonder "is there a full moon"???? Silly question I know.

Cancer, death, sickness, aging are always looming over your life and you may not even realize it...

All four have been looming over my head for a month or so and this week was especially interesting/trying...

I found photos my sister took of me not realizing that she was doing so. It is an interesting view of a life I have not lived... a life of the outsider looking in... no control... you just have to watch it all play out and hope for the best... maddening I am sure...

You are looking at your bald sister, four years younger than yourself, skinny, missing a leg, having cancer for a second time and you think... "what do I do? how is this fair?"

All the while I am in my safe haven... TV and family and keeping my mind off the next hospital visit... never really thinking about how this effects the other part of my family... because who with cancer wants to burden themselves with that??? My goal in that moment was to get back to school and my life without cancer...

It becomes this strange social balance that no one really knows how to deal with... what do I do, what do they do, if I do this does that bother the other party... I mean, who knows how to deal with a young adult with cancer... That shit is for old people right? ; )

Nope!

How many young people have I interacted with that have cancer? Too many... We exist people!!! It doesn't just happen to old people...

So the question still remains... How do our caretakers take care of our lives in a dignified way? How do we as cancer "victims" deal with our family being overbearing and invasive in our lives?

YOU DEAL!!! They care what happens to you and want to be there for you... even if it feels like a total invasion of privacy, as long as it is in your best interest, just go with it and let someone else take the reigns...

You need to focus on YOU! Let the people you care about worry about the other stuff... they want to help...

I look at the photos my sister took and I admire them... because it is a view of how the other person sees you... They may not have another photo of you in your life and they want to document the time they have with you... They may know deep down that you may want to see those photos in the future in admiration, so they keep them...

Any way you look at it, this person is thinking of you and your life and even in the darkest days they want to document your life because they know one day you will look back and remember that time in your life where all that mattered was family and staying alive...

That is what life is all about right?

My Immediate Goals

Some people may not first realize what it means to have a fake leg. They may think you put it on, learn how to walk on it and then you are good to go. There is so much more to it and the quality of leg makes a huge difference in quality of life...

Right now I can admit I have it better than a lot of people. I was able to get one of the first generation computerized knees. It by all means has been a great knee to have after losing my leg at such a young age.

But now I have hit the 5 year mark and my warrantee has expired. This means if something breaks in my leg very seriously I will have to get a new one... Here is the kicker, they won't let me get the next generation of leg... They (being insurance) will give me a leg (most likely with a hefty copay) that is exactly the same if not lesser...

Right now, I cannot climb up stairs more than one stair at a time... I cannot climb up hills without exerting so much energy and tweaking my back in a very unnatural way... I can't even go on an easy level ground hike because the rocks on the ground if stepped on will make me fall... I am terrified to get even a small splash of water on my leg because it can completely short circuit the computer therefore making my leg completely unusable... That is just a few of the many issues I have to deal with on a daily basis...

Now with all that being said, there are a lot of hoops I have to go through to even find out the out of pocket price for my dream leg... This is going to be a lot of work and a lot of headache I am sure... But I know it will be worth it because my day to day life will improve tenfold...

Here is my dream leg

Life and Death, Strength and Weakness

This may become a morbid post but my thoughts tend to wander to different spaces...

I was probably my great grandmas' favorite... I was one of the few girls on that side of the family and spent a lot of time with her in my childhood...

She would let me use toys that she would never let the boys touch because they would break them. She would even confide in me that I was the only one allowed to use the little penny slot machine she had because I would never break it. "Those ornery boys will break it within two minutes". It was probably true but it made me feel special.

It was a very difficult passing and was a long time coming. My great grandma has Alzheimer's syndrome and ended up being in a home because my grandparents could not take care of her anymore. My parents had me visit her a few times before her passing.

I do not know how many actually know what Alzheimer's does to your mind... at 12 years old I was definitely not prepared for what happens when this disease takes over. But I think my parents thought I could handle it. I do not recall if my two older sisters ever visited her or not. But it is a life changing event that occurred by walking into that home for the elderly.

 I had a  jr high class assignment to do something out of my comfort zone and my parents encouraged me to speak to my grandma... I was always unsure of what to say to a human being that was losing her mind... but my parents felt I was capable of enduring this task...

We walked down this hall that reeked of old people... the smell of someone's mouth that had not been brushed in days... Babbling old people confused as to where they were... or even more sad, old people who knew exactly where they were and were abandoned by their families never to be visited again... please God, take me before I end up in a place like this...

I walked into her room which she shared with another elderly woman... I could tell the vivacious women I used to spend every day with was no longer in this weathered body... It scared me...

She said so many words that I had not even really heard before, and it was coming from my grandmother's mouth... "That fucking bitch had it coming to her. I wish these stupid bitches would leave me alone. These nurses treat me like shit." ... My parents had to remind my grandma that I was in the room... she changed her tune then talked to me like I was 6. "Oh my dear Courtney, you are such a sensitive girl, it is so nice to have such a loving caring girl around." ... she then quickly went back into delusion that some nurse was out to get her. I am unsure of my parents perspective but I think they did not expect this to happen when I visited. Needless to say this was an upsetting experience for me.

Fast forward to her inevitable funeral that we had to attend... the first funeral I ever went to... They had an open casket and asked everyone to place her favorite flower into it.

It is a bit blurry what exactly happen but this is what I know is fact...

I walked to the front with my dad and my oldest sister to place a flower into her casket... I had never seen a dead body before in my life and this was especially jarring... I placed the flower in with her and stared at her lifeless body... contemplating about life and thinking about all the things we did together... My oldest sister is extremely distraught and my dad is hugging her... I look up to witness this and he extends his hand to my shoulder to comfort me... My sister is bawling into my dads shoulder...

This has forever stuck with me... was I always meant to be the stronger one? Was I always suppose to be the one that endures the hardest things because I can? Are these strange thoughts to have?

When I had cancer both times my sisters broke down, understandably... but in some twisted way was this suppose to happen to me because the universe knew I wouldn't completely crumble and fall apart? What if the roles had been reversed on one of my sisters? Would things have gone differently? Would we be the same people we are today?

I know what ifs are crazy and never predictable... but how would things have gone? Would we all still be here to tell the tale?

Shape shifter

Psycho, you killer, you cancer, my friend
Why don't you give me an answer for when
When you'll let it go
(Local Natives)

There have been many times where I look back at who I was 4 years ago and I say... "who was that?"

There is a new app that shows you what you said 1, 2, 3, 4, 5 years ago... I was a dumbass 4/5 years ago I can say that without a doubt...

Abbreviating things like an early 20 something does... it is irritating.  BTW, OMG, B there, Where R U.... ugh.... yuck...

I struggle with letting things go that happened in the past that I felt I should have changed. Am I crazy? Should I worry about that now? Does it even matter?

I hope I have evolved since that 22 year old person... but, fuck... I want to punch my 22 year old self... hard...

No idea that soon ahead, days from now, my 22 year old self would deal with the life and death decision that I now live with... I had to trust in my dumbass 22 year old self in order to live or die... does that give you confidence? I didn't think so.

Thankfully the right, more difficult decision was made, hopefully my stupid 22 year old self learned some things. 

The next 5 years would be determined. Not very helpful that all this happened around my birthday. Because now my birthday is one of the 3 most detrimental memories of my life. Thankfully the dumbassery of my 22 year old-ness was taken over by sensible, more sound thoughts instilled by my parents from my childhood. I was able to make a sound decision and chose life over limb. Not an easy choice, but it was made...

You are not to blame for the life you ended up with. The life you chose is what you made of it... for better or worse... you made your choice... we always hope it was for the better... looking back at it and regretting will not make anything better... the choice is made... the path is laid... now you must follow it... for better or for worse... this path is what you made and it will be the thing that leads you to where you are meant to be... hopefully for the better and not for the worse...

Boston Marathon

Via Huffington Post Photogapher Robert X Fogarty

As we approach the year marker of the bombing of the Boston Marathon I start to think about how we approach our lives...

April 15 2013... people were changed, families were changed, lives were lost, lives were eventually gained...

Is it strange that we take huge tragic events like these to effect our lives in a positive manner?? I think so, but it's true...

Many people lost lives, many people lost limbs, many people felt like they dodged a bullet, many people lost a sense of security in their lives... How can you do something so positive like a marathon and it end so so badly?

You start your day like any other... cup of coffee...simple morning conversation with your family... passing hellos to random people you pass... simple mundane things that you would never remember otherwise. But this day, you will remember every. last. detail...

 There are so many positive things, so many positive outlooks, so many positive reactions to this tragedy... These "men", bombers did not win anything... The "victims" won...

For people who are not disabled nor have gone through any sort of difficult feat as even having a family member lose a limb, you may not understand where I am coming from...

It seems like the end of the world at first... How are you suppose to live through something this tragic, this horrific, this unthinkable?

I have yet to meet an amputee that does not have a very very positive outlook on life. We know what it is like to see death in the face and say "Fck you, you are not taking me, I am going to make it through this". It is a triumph we have achieved, we are not victims, we are victors! We have gone through more than most people go through in a lifetime.

Don't feel sorry for me or any other person that is disabled. Don't give me that typical "I'm sorry" face when you see me. We have more understanding of what life is about than many many people do. We do not want your pity... we want your respect.

Whether it be cancer, diabetes, accidents, bombings, IEDs we lived through it and made it out the other side. We are loving life and appreciating every second we have of it.

 I respect these bomb survivors so much that are standing up and showing that we as human beings can rise above adversity, terrorism and say "you are not taking me down... I am still standing... even if it is on plastic feet."

Take this into account on your own lives... are you living how you should? Are little things bothering more than they should? Are you really living life to the fullest? Are you living life like you may not have another day?

This is how life should be lived... like there may not be a tomorrow... like today may be the only day you have in the sun... Are you living life like you want to?

Helicopters and aeroplanes

I tend to use a lot of metaphors in what I write. As I have gotten older, everything seems to mean something more if you put your mind to it.

I was reminded of a childhood experience I had when I was about 6 or 7. My great aunt Eva Lou was in California for a week or two. My dad and her had hit off like gangbusters when they first met. He had planned a surprise for her and all of us, and had his pilot friend bring a helicopter to the field next to our house.

The pilot took each and everyone of us up individually and did an air tour of the area around my parents house. I was one of the last ones to go.

He took me up on the helicopter and we flew over the river, Tracy, Manteca, my parents house then went back to land.

It wasn't the fly that stuck in my memory, it was the landing. The pilot let me take control of the helicopter when we were close to the ground and helped me land it. It wasn't as easy as I thought it would have been...

You have to land exactly right or you will have a rough landing. He had me move the plane up and down feet from the ground trying to get it perfect. Every time seemed scary and frustrating to me until finally I landed it just right. It was exhilarating feeling like I was in control of something so big.

It reminds me of the things after that incident that made me feel so small at the time, but once I accomplished them, I felt like I could do anything with my life. It doesn't matter if it is cancer, death, some other illness, or something much more simple than that... It matters that you conquered it and figured out your own way to do things, make things work for you in your own favor...

Think things through and land that plane steady and smooth, or make a rough landing for yourself and hope everything turns out OK... 

Life is what you make it... you better make it good... you only get one chance...

The beginning of something new...

Year 4... I can't believe it has been that long... This is kind of a continuation from the previous blog...

4 years ago this week I had the hardest day of my entire life... I don't think I will have any day harder than it...

What do you do when you have to choose between your leg and your life? I was hesitant...

The weeks preceding this life altering day was... well... confusing...

I was extremely defiant to getting rid of my leg at first. But I thought about it more and more... recovery time, rehab, pain, the chance of cancer coming back was just too much to imagine...

I recall a young man talking very directly to me about the pros of my situation... my life was such a blur I can barely recall who he was... but I knew he knew what I was about to go through... and he was right... my leg had to go...

I don't really recall the night before... I do remember sleeping much more well than I expected...

The worst part of this whole day was the waiting... waiting in the waiting room... waiting in pre op... waiting on the surgery table...

I remember walking (insisting on walking) to the pre- op room knowing these were going to be my last steps on my left leg... I wanted to savor every second of it and remember every feeling and sensation I had...

I had to be by myself at first in the room which was line up with people (mostly older and decaying) waiting for surgery. Some people were just coming back from surgery and were very out of it... and very emotional, either anger or crying... not sure why anesthesia only brings out these emotions...

I took off everything... everything that was me... my favorite necklace, all of my clothing, stripping me down to nothing... a precursor, I felt, to how I was going to feel after all this was done... naked... defiled... maimed... disfigured...

I then had to put on those god awful shit brown grippy socks they make you wear that barely stay on your feet... the last thing that would ever be on my left foot... most likely why I have a negative feeling whenever I see them...

The nurse that was going to take care of me obviously had no idea why I was there... I am sure she was regretful when she asked...

Big happy smile on her face, pleasant woman, reminded me of one of my aunts... "So what are you getting done today?' she says with a smile on her face that was meant to be comforting...

How the hell am I suppose to answer? I can barely keep it together... I have been good all day and not cried once...

I clenched my teeth, then relaxed my jaw and answered with as much composure I could muster... "My leg is being amputated today..."

The smile on her face went away and tears started streaming down my face... the only thing she could say was "You are my daughters age" She gave me a hug, assured me she would be there when I got out of surgery, and then she never came to my bedside again...

That encounter has always bothered me... was she too upset by it? was she just busy with other patients? I guess I will never know...

My dad stayed by my bedside until they took me away... everyone came in and out to wish me luck and he stayed with me the whole time... The second he hugged me and walked away I couldn't stop crying... it was real... this was happening... I am never going to be the same again...

As I am brought into the cold surgery room, I am told to curl into a ball so they can start the epidural. I cling to my knee and look at my other leg, frantically wiggling my toes, knowing I will never see that leg again... Holding back tears... The numbness takes over and I know at that moment I will never feel that leg again...

They lay me back and cover my body with blankets. They insert the extensions where your arms rest into the surgery bed which make it form some sort of unholy cross. They strap my arms in, I have this heinous thought that I am about to be tortured by some evil doctor. I can see them lifting my leg and covering it with orange iodine, getting the tourniquet ready, and started going over the technicalities...

I am still awake..."Courtney Wilson, amputation of the left leg...." there are so many things are rushing in my head... These words, as simple as they may be separate from each other have formed this huge ominous storm cloud over my head... it impossible to hold back tears... I am incapable of moving so I can't even brush the waterfall of tears coming down my face, as hard as I may try...

The nurse next to me sees that I am awake and crying asks for me to be put under... she takes off her sterile glove, touches my face, and wipes my tears away... I can't bear to meet her gaze in fear of crying even more...

That's the last thing I remember...And I will never forget it...

Reflection

Courtney Dawn Photography

Looking back on things doesn't necessarily mean that you are regretful or sad about the occurrences in your life...

That being said I seem to look back a lot on my life... not out of nostalgia.... not out of regret... nor out of sadness... but out of reflection...

If one thing wouldn't have happened then another thing may have been different... and with that I can be thankful things came out the way they were... they may not seem ideal to most people but I am happy... 

I guess I can't say it enough sometimes... but I am happy now because I knew where I was 4 years ago today...

I had just celebrated my 22nd birthday with all of my friends. I came home for the weekend because I was interning in San Francisco. I had just had surgery a few weeks before on my leg to remove the screws from my leg that were pushing out. 

I headed to the pharmacy in Manteca after having lunch with my boyfriend at the time. Normal occurrence with few people at the pharmacy. I was wearing a brace at the time. A man that parked in the handicap spot next to me said "ACL?" I wasn't in the mood for having the "I had cancer" conversation so I said "no"... probably rudely but I didn't care...

I walked into the pharmacy and am about to get in line when I get a call from my surgeon. 

"Courtney, how are you feeling?" 

I feel optimistic about the recent surgery so I reply "I feel good! The pain in my leg isn't that bad and I seem to be healing well. How are you?"

"I am doing well thanks for asking. I wanted to talk to you about how the surgery went."

"I think it went pretty well don't you think?"

His voice gets softer and slightly more serious... I feel a huge weight hit my chest like someone threw an anvil at me.

"Courtney, when we took out the screws remember I said they just fell out right when I opened your leg up? Well I did some routine tests just to be sure... the Sarcoma is back and it is in your tendon now."

I am standing in the middle of this swarm of people in this god forsaken hospital by myself and I am being told that I am 22 fucking years old and I have cancer... again...

At this point it has not sunk in yet completely so I reply "Well I am at the hospital. Can you order labs for me so I can just get it done while I am here?"

He seems a little jarred by my response but he complies and then asks "Should I call your mom or do you want me to?"

Immediately I know I can't stand to hear her voice hearing her daughter has cancer again... "Please tell her for me... I don't think I can do it." 

"OK, it will be alright. We will take care of this. Your labs will be ordered soon."

I don't even bother getting my prescription. I just walk back to my car and sit in the drivers seat sideways with the door open. I couldn't hold my disbelief back anymore and the tears start coming. The man who had asked about my knee before is now looking at me with concern. I can only imagine he thinks that he said something wrong and that is why I am crying.

I stay in the car for a while and then drag myself to the labs. Hoping no one talks to me about anything that will make me cry. As I am sitting there getting my blood taken I am just thinking that no one even knows that anything is wrong with me yet... I have to have this awful "I have cancer" conversation with friends and family again... how am I going to go through this again... I know the statistics about re - occurring osteosarcoma and they are not on my side...

What is going to happen with my life? What is going to happen with my leg? Will I live... or will I die?

God only knows...