The True Meaning of Hope

I've always had a wild heart. Even as a small child I have always craved the adventure and the excitement that can be found out there in the vast crevices of the world.

I wanted everything.

The bright lights of a busy city. To know what it would feel like to be standing on top of a mountain. To dance in the middle of the street under the Roman Colosseum. To experience all the different tastes from around the world. To enrich my knowledge by learning at a university. To meet influential people. To make life long friendships. To swim in all four oceans. To feel the feelings you get when you dedicate your career to serving other lives. To find eternal love. To give life to another human. To spend my life feeling free.

And although, I have loved doing many and more of those things listed above. I feel myself now trapped. Something comparable to a caged bird. Trapped in a body incapable of living the life I once pictured myself having. The grand plans I had for my life, slip away as I feel sicker and sicker, day by day. Sometimes it seems acceptable, some days I forget about it all, and live day by day. Some days it's okay and I still find happiness and love in many things. I always am and always will be appreciative and grateful and humbled by the immense amount of blessings I have.

But some days it's not okay.

It's not okay that I'm 26 and that I am suffering from a list of cruel diseases. It's not okay that I can't walk some days without total pain. It's not okay I can't breathe without the stabbing, burning pain I feel in my chest. It's not okay that I woke up one morning and couldn't move my hands anymore, or write my name, or type anymore, and that that went on for days at a time. It's not okay that doctor's no longer have solutions or answers for the bad tests results that have my name on them. It's not okay that I see myself losing mobility and that nobody knows the answers to fix it. It's not okay that I'm not even able to travel to see my best friend. It's not okay that my memory is failing me and I can't articulate the things I want to say anymore because of the chemo therapy I've had or the medicines I use. It's not okay that I see people around me thriving in life while I feel like I'm not. It's not okay that I sit alone all day in pain and look out the window wanting to dance and to feel the sunshine.

Some days it's just not okay.

There's a remarkable quote by Anne Frank that says; "I keep trying to find a way of becoming what I would so like to be, what I could be" ... she goes on in her amazing words to say; "I don't think of all the misery but all the beauty that still remains." Lastly in her diary she states; "Where there is hope, there's life. It fills us with fresh courage and makes us strong again."

I have no life comparable to Anne Frank, but if you've read her diary, or known others who have been through turmoil, or been with anyone with more public trials and tribulations, you know there is a time where life gets hard. You must even know this in your very own life. Where everything just becomes too much or unbearable or just to painful. Where you feel dreams slipping away, where reality becomes a ticking time bomb, where you feel hope is lost.

I've felt this way. I know everyone has. One of my favorite quotes is; "Be kind, for everyone you meeting is fighting a hard battle." That can't be more true, because everyone is fighting, in one way or another, either publicly or silently. That's why I do not wish for pity, or for people to feel sorry for me. (That's not why I'm writing this.)  But this is also why and how I know there is hope in the world and especially hope for me. Because I realize I'm not alone in this feeling. Everyone must know the feeling, of grief, of unhappiness or when you feel like life is over and that so much is lost or gone. No one person has the same life, but at one moment or another people have traveled down the road of true sadness and hardship, And at that moment people have one of the biggest choices to make, to dwell in the turmoil and sadness, or to let that moment eventually pass by and live with hope.
I've seen this moment pass for so many people. I've seen it pass for myself. I've seen people in the midst of what feels like the end of the world, choose hope. I have seen many people challenge the odds, and go on living life. To go on to make a better life for themselves and others. To go on living with hope. That is why each morning I still get up, get dressed, continue through the pain. This is why I still love my life. Why I choose to smile, even though some days it's just NOT OKAY.  Because that's what you do to keep, keeping on. You get up, even though it hurts, even though you don't want to, you keep going even though giving up feels like a real option. Because you still have and hold on to hope.

Someone once told me that the word hope really stands for, Hold-On-Pain-Ends. I have that one word tattooed on me. Tattooed in my mother's handwriting even. I stare at it daily. I let it remind me always of it's true meaning, because I believe it and because I will always hold on, because I know pain ends.

Goodbye

Saying Goodbye is never easy.

Feeling that goodbye in your heart is much worse.

It leaves that sting that cannot be cured by anything but time. 

And still you'll never be the same after.

I've said a lot of goodbyes in my life. 

I've said; 

"Peace out", to bad habits

"Good riddance", to bad boyfriends and bad people

"See you soon, this isn't goodbye", to my family and friends at airports and places

and "I hope I never see you again", to awful people and places.

I've even said the most heartfelt real "goodbye" at the grave of my best friend who died in college.

But these often trivial, relevant and heartfelt goodbyes aren't the goodbyes I speak of.

Lately, I've I have been saying combinations of more permeant long term goodbyes. 

Hard Goodbyes

Final Goodbyes

and Downright Devastating Goodbyes

In one years time I said goodbye to my health and independence as I was diagnosed with cancer the first time. I said goodbye to myself for awhile as I gave my body, mind and some of my spirit away to be cured by science, by the grace of God and by faith. I never said goodbye to happiness or to love, but I said goodbye to life as I knew it. And I might have to say that terrifying goodbye again, if my health continues to worsen as quickly as it has been. 

I said a final goodbye to my dog, who in one years short time became my best friend. My companion while I was sick and alone homebound. The whole time I was sick and felt like I was dying, he too himself was sick and physically dying. I said goodbye to a beautiful Friend and a beautiful spirit who I truly loved. I never knew how much love could come from such a small creature, who was only mine for a short time. But we loved each other and understood physical pain together. It was one of the hardest goodbyes to this day that I've had to say on my own in my adult life. I still can't believe he's gone. 

I recently said goodbye to my dear Uncle who battled through a horrible, rare cancer. That left him in a state of pain that no man should have ever had to endure. I said goodbye to a man who has been a part of my whole entire life. I said goodbye with the heaviest heart as I knew his life was ending so prematurely. I said goodbye with mixed emotions of happiness that he would finally be out of pain and free and would soon be with his God. 

But I said a personal goodbye with heavy emotions of guilt and sadness. Sadness for his beautiful family and for my family. A goodbye with sorrowful guilt inside thinking; HOW THE HELL did I survive this cruel disease? As I see a man in front of me whom I barely physically recognize. 

Cancer destroyed the man physically I once knew, but never scratched the surface of the spirit of the man that I knew and loved my whole life. How am I here surviving day to day, as he lays all 90 pounds of him, left in the most unimaginable pain. 

It hurts my heart. It shatters it. It broke my heart completely in a beautiful way, when my Aunt read him a note I sent to him via text message telling him; That I knew he would be my personal cancer angel because we have a strong bond found only through this awful disease. I told him that I knew I would always be able to feel him with me, as I get ready to possibly fight again. He smiled and nodded. Agreeing to be with me always. 

This goodbye leaves me and my heart in shambles. Anyone who has fought cancer can tell you that when one of our own has a fight that comes to an end, that it hurts us in a different way that we just can't explain. Even when I hear of someone I didn't even know, dying from cancer it hurts for a moment, because I know how hard the fight is and was. 

This is the most temporal type of goodbye, I know I will see my uncle again, and in good health and in the most beautiful state possible. And even better I know that while on this earth he will be with me every step of the way. The last moment I had with him I saw his beautiful smile and that's what I choose to carry in my heart forever.

A goodbye that was a smile.

Jeffrey Lynn Calcara
May 8, 1955 - July 23, 2014

Hilarity

In a world of war, DISEASE, sadness, and cruelty I just wanted to write down some nonsense for your reading pleasure. Funny helps, laughter heals, happiness is contagious and stupidity is freaking funny! 

1. I have had a permeant cough ever since radiation and from cancer. The only remedy I have found that really works instantly is; ALTOIDS!!! lol I eat them on the reg. People look at me weird, I cough and shove altoids down! I'm talking like a handful HAHA! NO I AM NOT a smoker!! Also the Tin is fun to keep junk in afterwards! I have gotten some really weird looks...

2. Lately my biggest hatred in life right now is FRUIT/VEGGIE stickers! LIKE WTF is the point of those? (I know, I know to scan them) but I can NEVER peal them off right and they are so sticky and then stick to my skin! I HATE THEM! I truly hate them!

3. So y'all, know my best friend Tracy, by now! Okay so he is a MAJOR NERD/GEEK enthusiast and attended the latest Fantasy Con. in his hometown last week. Okay LONGGGGG story short, when I was in his class he asked us to write a paper on our favorite movie and why. I wrote about RUDY the BEST movie in the world. It's one of my favorites because it's motivational, moving and a great story. Also my dad showed it to me when I was young and i'm pretty sure it's one of his favorites too! ANYWAYS TRACY being the BEST, best friend in the world Met the actor; Sean Astin who played Rudy, Samwise, and that weird pervert in 50 first dates, and the MAN gave me a message of well wishes, a cancer congratulations, and a happy birthday wish! I AM so happy and over the moon about this!!!!!!! How cool! I shall add this to my list celebrity encounters!

Lisa & Tracy

4. I am by no means judging anyone who has this lifestyle, but at the grocery store last weekend I saw a woman dressed in a full gothic, wedding dress, gown, with a GARLIC chain Necklace around her neck. I mean floor length, train, veil, gloves and black lipstick. Wandering around the grocery store asking men to marry her! bahahahahahahahhahah!! I'm sorry it was scary and hilarious!

5. I have been a cleaning freak lately, and I was going through old swim suits! OH MY GOSH! i cannot believe the lack of clothing I felt inclined to wear. This was of course before cancer, no obvious scars, and when I thought I was hot and at age 18-19.  But OMG I just sat there starring at these little bikinis and I just died you guys! Died Laughing! I could never wear them now! Grandma status! haha they have been washed and mailed off to another good home. To some else who can rock them!!

6. This is one is mildly *inappropriate* haha! So matt found a VERY old garbage bag of crap in the shed. In a garbage bin that wasn't ours. He lifted the lid and the WHOLE front yard instantly reeked! LIKE AWFUL! DISGUSTING stench! And our front yard is large, so imagine the horrible smell! Anyways I was worried for the neighbors etc, we bleached it and lit a fire in the pit to hopefully escape the smell. Anyways later on, I opened the door and YELLED at the top of my lungs; "OH MY GOSH MATT, IT smells like a DEAD MAN's VAGINA! out here!" haha and all 4 neighbors were present! haha bad moment for my quiet, nice neighbor, maturity, image. But hilarious and I secretly LOVED it and am still laughing about this!! I'm sorry mom you raised me better! LOL

7. When I was home in Olympia Washington, a very liberal, hippie(ish) town, that I LOVE. I was at the local farmers market WITH Matthew. And I kid you not this older couple behind us said, "Lesbians, just run this town now don't they...etc etc." OMG HILARIOUS! YES, I have short hair (because of cancer), YES I wear floral leggings, and YES I wear birkinstocks regularly (they're comfortable!), NO I am not a lesbian! I support the LGBT nothing against them at all, but i'm not a member! omg was this funny!

Floral Legging Display

I know all of this stuff is rather stupid more than funny! But I hope that you've gotten a laugh or two! And that while you were reading you remembered that there is good and funny in the world out there!  I am a firm believer positivity is the only way to live!

Love you!

Being Ridiculous in public

Deep New News.

*note this was written before reading the novel; "The fault in our stars", but is being published after. 

Writing heals me. It just does. Getting it out there, even though it's vulnerable, raw, and scary as hell, it heals. 

What I haven't been telling you guys is that for the past two weeks I have been going through the most hellish. CANCER.  RELAPSE. SCARE. EVER. 

Although awful, anxiety filled, terrifying, confusing, and painful, I can (semi) confidently tell you I am still cancer free! 

But let me start at the beginning. 

My body. Is not my old body anymore. It's not n'sync (best boy band ever by the way) with my heart (soul) and mind anymore. It is it's own creature. I have no control anymore, like the average person, like I once had. 

I was experiencing the EXACT same symptoms that presented themselves a year ago when I was diagnosed. Ask any cancer survivor we live in constant fear and paranoia of relapsing. But this wasn't my usual "oh I have a cough, guess I have cancer again.", issues. This was real. I couldn't breathe normally again, my hodgkins rash was back, and something funky was going on. I could just tell. In My heart something was wrong. I know enough by now that this was different. I couldn't walk without pain, I couldn't feel my feet beneath me, I couldn't BREATHE, sneeze or cough without extreme, terrifying pain. 

This was heart breaking to me. I could feel in my heart something was wrong. I couldn't get in with the cancer center right away, so I went to our dear friend who is a family practice/internal medicine doctor, who actually was the one to FINALLY diagnose me with cancer, after several failed attempts prior. She took one look at me, (we talked for a minute) and she shipped me right off to the hospital. MY WORST FEAR HAPPENING (AGAIN)! You can guess, more fuel to the anxiety, terrifying, confused, fire. I honestly thought she was going to say it was all in my head again. But she is smart, she is thorough and she cares a lot about me. 

Test, 

After Test,

Needles, 

After Needles.

Scanning... 

And then waiting..

and more waiting. 

Hidden worry. 

Hidden pain. 

Extreme pain.

You see when you 'graduate' from having cancer, they don't exactly tell you what's next. They hope for the best. Kinda send you on your way with a; 'hooray you did it', and a 'great job' and well see ya soon at your next appointment. I honestly thought wow in three months of recovery and I'll be back to me...WRONG! I have developed a LONG list of side effects. But lastly as I figured out today... 

I have developed some new diseases, new conditions, and some life long physical struggles and challenges. (That I am not ready to announce publicly yet) 

It's heart breaking!
Hearing/reading at 25 I'm going to possibly live in chronic pain for the rest of my life? That I can't have a surgery to remove the problem because it would be 12 hours long, involving cracking my whole chest open, removing organs and lastly I possibly wouldn't live through it. That I might be infertile by age 28, that I might not be able to walk the rest of my life, that I possibly won't be able to pick up and carry my own child. That I should live life to the fullest now while I can?! It is heartbreaking. 

But you know what? You know what I have to say to that (above)? I say BULLSHIT. I say I'm going to beat these odds. 
I say (with tears in my eyes), 
CANCER YOU SAID;
I couldn't run again. 

Guess what I've run a mile straight 9 different times!!! 

You said I might not be able to swim again. 

Bitch, I've already swam laps in a pool. 
You said I wouldn't be able to breathe enough to ride my bike.

Well I have ridden down my driveway.
You said I might need constant oxygen in 5 years. 
I say we'll see about that in 20 years. 

I don't do this everyday, because I can't. But I do a little each day. And it makes me stronger. I'm not going to end up in a wheelchair tomorrow. Sure sometimes I ride in mine because I can't feel my feet anymore, but I'm not investing in a motorized one anytime soon. 

Stepping on soap box for a minute. 
I am devestated in my own way, I am sad from this news. I'm allowing myself to be human. But am I going to let it ruin my life? NO, absolutely freaking not! NEVER! I am going to get up each morning, assess what I can do that day, physically and mentally, and then I'm going to go do it. Somedays it will be small victories, someday I might hike a mountain. But I'm going to keep living. I'm going to fight. I'm not going to give in to a life full of narcotics and disability, until my body says I have to. But even so... I am going to be happy! I'm not perfect. I write this with a heavy heart, tears almost hitting the keyboard. But I am beyond grateful. And always will be! Because life is magnificent. I have lived some of the greatest moments in my life and I plan on living many more.

Many, many, more. 

Remission

Okay to be honest with you; remission at this point in time is awful! Physically awful! There are so many great, wonderful and adventurous things that my mind would love to be doing, but my body just won't allow it! It is one of the most frustrating things! I feel as though I have a little taste of a lot of what my older and elderly friends go through as they lose their ability to move freely and to do the things they once were able to! I have been blessed beyond eons, I was once in a wheelchair for a short amount of time, but I feel like a true disabled person!

 I try so hard, really hard, to do things, but THINGS are difficult! Really difficult! Everyday things that you might be doing, I can't, yet! This reality is extremely hard to face! Grocery shopping wears me out, walking after awhile hurts, my first go at physical therapy made me sick (vomiting after and flu like symptoms), traveling to my appointments kills, and even cleaning my house sets me back a day after. Nobody warns you of this! Yes they say; ease back into your life, but basically my (amazing) oncologist was like; "see ya in the summer!" What to do? What to do NOW? It is so frustrating! 

I love talking to my mother about this because she knows my limits, but she also knows my laziness and fears! It's a horrible balance of getting up and doing it, but not doing TOOOO much, or out doing yourself. 

I have this guilt sometimes on the days where I spend most of the day exhausted in bed sleeping! I feel terrible about myself! I wonder a lot if it's in my mind even though it has proven not to be. I just have hunger to live life again.Cancer is cruel! Early remission is awful. You just start feeling like yourself again, just to be reminded by the fact that you're no where near the person you were before. You're the 'new' you and somehow you've got to adapt to that.  Adapt to your new physical disabilities that are life long and altering. But somehow I am determined to make those disabilities into triumphs and continue the fight.

 Awww the reality of cancer is yet again heartbreaking and hard! Even while in it's remission state. 

What's next?

One of the greatest moments of my life was finding out that I am finally in cancer remission. It has been a long road and I couldn't be happier to finally be done with cancer treatments. However my journey to great health is only beginning. Because of cancer I now have some life long health challenges to adapt to. Those including; blindness, neuropathy, early menopause, lung and breathing issues, etc. The days of living like a reckless adult-child (lol) are long gone and diet and food consciousness, (something I have NEVER had to worry about before), has begun. 

I do not know what caused the cells in my body to go cancerous and psycho, actually nobody does, but I do know that I never want to feed those bad cells again with what I put into my body. It is hard, I have never had to diet, or eliminate any food before and never had issues with weight gain or loss. I pretty much ate whatever I wanted anytime I wanted, including crap and junk food. (Disclaimer my parents are probably the most healthy eating and healthy people I know they taught me the right way, but I made my own bad habits along the way). Anybody who knows me knows my love for diet coke, those days are over, or my love for CANDY, those days are numbered, I know it's hard but soooo worth it. 

It is SO hard right now to recover. You never think about recovery time when you're sick, you just think about living again and getting back to 100%, in your mind you think it's automatic but it's not. Right now I'm in limbo, I'm getting there but not quite there. Everyone says it will take time, and I believe it but I am bored and ever so anxious. I cannot quite work again yet and doing a lot of activities tires me fast! I feel guilty sleeping in and sitting around, and try to stay busy cleaning and organizing junk but to be honest the role of 'stay at home woman with no children' is NOT for me!!! I try art on occasion, read when my bad eye allows it, have gotten quite familiar with Netflix (haha) and write friends as much as possible. 

A lot of people ask me; "what's next for you?!" And I just look at them with the biggest smile on my face because I honestly do not know what's next for me, outside of striving to be a healthy human being and living life to the fullest. I smile because I just started living again, although boring and slow, I know that the future possibilities for me are endless! 

Why cancer hurts

Cancer is the most pain I have ever felt. Not only physically but emotionally. I write this as I am nearing the end of my treatments 8 almost 9 months later. 

In the beginning I was still me, in the middle I felt like myself still, but at the end I am a completely different person. I stand in front of the mirror and hardly recognize the wounded person in front of my eyes. My hair gone, thick scars where smooth skin used to be, black bruise like marks everywhere from the harsh chemicals used in my body, my left eye sight clinging on, pain everywhere, and my body so swollen from radiation, to me it is unrecognizable. All of this is vanity in my appearance but inside I'm different too. I'm scared, I have questions nobody could possibly know the answers too, I have anger, sadness and happiness all at the same time. I have been alive for the past 8 months but I have not been living. Confined in a house, hospitals, care centers and at one time a bed, I was left in other words to suffer from a terrible disease. A disease that not only eats at the body but at the emotional heart of a person. Cancer is a cruel disease any patient can tell of the harshness, but also any survivor can tell you of the daily battles you still fight as a cured person. 

There is a psychological part of cancer that I was made aware of at the beginning of my journey and I have done my best to beat a cancerous depression. But like anyone else I have my moments. The 'why me?' moments, the survivor guilt, the terrified feeling of; 'what if I relapse?', and many more. I struggle with the fact that my body will never be the same again. While going through treatment I really never thought about what I would look like when I was finished, I never pictured myself looking like this. People say you will get it all back, but even my oncologist, radiologist and my shrink know better than to say this, because in fact my body will never be the same again. The risks have gone up and the good chances of the old normalcy that I knew have gone way down. I'm left as I feel a mangled replica of someone who kinda looks like me. It's difficult, it's so hard, it's actually a little bit heart breaking. Of course I have those around me who say it doesn't matter, I am the same to them. But it matters to me, I'm not the same to myself. I'm different. It's like a terrible hair cut you have to get used to, but much, much worse. 

I pray a lot, for self acceptance, for gratitude for my life and those in it, for the ability to find my 'calling' in life, and for just the strength to keep holding on. 

And although there is an emense amount of pain in cancer. Too much pain. Don't worry I was able to find some happiness along the journey, but that tale is for another day.