Lessons Learned

Sometimes I wish Jon wasn't so special. I know that if he wasn't the amazing person he is he wouldn't be going through all of this. He hates when I say that, but I see it every single day in the kids I take care of. They have something extraordinary about them... something I often search for words to describe, but find it impossible. And my Jonathan has that, too. I know it's why I love him as much as I do, but sometimes I can't help but wish he was a little more average.

It makes me angry. I'm not a religious person. Admittedly, I don't often think of God, but yet I find myself blaming him for so many things. Is there an underlying lesson here? If so, then maybe God could've found a less extreme way to demonstrate it.

But I don't want to learn any more lessons. Jon has faced more than his share of trials and obstacles. And I've learned enough lessons for a lifetime. I've learned that we really can't control our hearts and who we fall in love with. I've learned that I'm stronger than I ever knew I could be. I've learned that I'm incredibly lucky to have Jonathan in my life. Ok, that's enough. Sometimes all I can think about is where this incredibly difficult life lesson could be heading. I don't want to see just how strong I can be. I don't want to be a "lucky" person who HAD a love like this. That's how most great love stories go, right? Love and loss go hand in hand in almost all of the classic tales of true love. Well, I don't want it. Stop here. Insert "And they lived happily ever after." The end.

I appreciate our love every single day. Every single moment. Every hand-hold, every kiss, every inside joke. I cherish our snuggles and the life we've created. I love our ability to read each other with one glance, and communicate with our own secret language. And I'm so lost in this love. And sometimes I'm scared. I guess any great love is scary. Any time we truly fall, there is a risk that no one will catch us. There is a risk of living with a heart that is forever broken.

We go through these ups and downs and sometimes I feel like I'm outside my body watching everything happen. Though I'd like to believe I can control every situation, I know that I really have little control over these things. What I can do is love him... love him with all of my heart, and I do... but my ability to do much else is limited. So I just keep loving him. If that's all I can do, then I will try to do it better than anyone has ever done it before. I love him at the worst times, at the unsure times, at the yay times. I love him through the pain, through the tears, through the snuggles. I love him when he's next to me, and when he's not. I love him when he's dreaming and when he's tossing and turning. I love him when I'm cranky, when I've had enough, when I want more. I love him when I'm sure of everything and when I'm terrified. I love him without question, without conditions. And all I can do is believe that our love will somehow carry us through the low points as we constantly battle uphill.

Love is the question, the answer, and everything in between... and perhaps the only reason I still believe in anything bigger than us. Love is bigger than us. Love is the ultimate lesson-learned. And like Jon, our love is extraordinary. <3

Worst Case Scenario

Today was an emotional day. Don't get me wrong, I have many emotional days, but today was pretty intense. Being a pediatric oncology nurse, I've seen a lot of tragedy. (Not that you ever get used to it). I've seen my share of miracles as well, but any onc nurse will tell you, sometimes the unit can be intensely sad...like no hope, no light at the end of the tunnel, why did I ever pick this job, sad.

My job has always affected me. I can sit here and pretend I've seen it all before, but that would be a complete and utter lie. Every patient impacts me in some way, and sometimes, that way happens to be by breaking my heart. I can talk about professional boundaries, and coping, and learning to distance yourself from the stories of your patients, but it's crap. I don't believe there is one person walking this earth who can work in this field and not have a little bit of their heart broken-- even if they won't admit it.

I've always been able to empathize with people in various situations. However, since meeting Jonathan, I feel things differently. It's hard to explain. Work was always challenging emotionally, but now that I also live it. Well, let's just say I need a mental health day now and then. I feel like I can understand a different side of things, in a different way. It's not just the typical feeling of "Oh, that's so sad." I feel like I can relate in a way. No, Jonathan isn't my child... but I feel the frustration these parents are feeling. The constant, "Why?" The constant worry. When I take care of adolescents, I feel the way they do... that their entire world has flipped upside down and they have entered a different dimension. In a way, cancer creates its own world. A world I wish less people knew so much about.

I see parents in the hallway and know they are silently praying and wishing to see their child grow and live their dreams and I know that I, too, silently wish, probably 100 times per day for the same thing -- time. Time to have a life together, time to get married, have children, buy our dream home. All the while I know that no amount of time would ever be enough with Jon. There is never enough time with the one you love.

Jon and I have created a life together... a life together that may not be "normal" because of dealing with his disease, but somehow we've made it the most perfect life we could have ever imagined. But we fight for it...every single day. Something is always threatening it, challenging it, trying to damage us. It's exhausting.

He's been feeling pretty good, he looks great, and of course that means panic attacks for me. My constant fear of things being "too good" or "too easy". The minute I let my guard down and stop worrying, something is bound to go wrong, right?

Today, Jon went for a routine evaluation of his heart (since chemotherapy he's gotten in the past carries a risk of damaging the heart). They found a 'medium to large' pericardial effusion -- essentially, fluid around the heart. The doctors allowed him to go home since he's pretty asymptomatic. They are leaning toward it being a result of one of the oral medications Jonathan has been taking (of course, the one we think is actually holding his disease stable.) But I automatically think worst case scenario, which isn't helpful to my own mental well-being, and certainly is not the support he needs from me. He deserves more from me. When I'm upset he'll hold me and say, "I'm right here. Do you feel me? I'm not going anywhere." I hope he knows every second of every day that I'm not going anywhere either.

Sometimes I feel so incredibly threatened... all I want to do is run home and hold onto him as tightly as possible.

We loved with a love that was more than love

It's been so long since I've written. The truth is, I want to write. I started a post months ago and every now and then I look at it, edit it here and there, and try to pick up where I left off. Today I deleted it. So much time has passed it seems like a daunting task to try to recap everything that's happened... so I'm not going to.

Jonathan is doing well. We've had some very low lows and some high hopes and right now we're coasting. I'm ok with that. The road hasn't been easy for either of us, but his strength continues to amaze me. At the moment, we are back to chemo by mouth -- 2 pills daily. No IV infusions, no high-dose regimens, no triple/quadruple-weekly visits to the clinic. He looks great and his pain seems to be improving. We're both keeping our fingers crossed. Neither of us gets too excited -- we know how quickly things can change. So we try to enjoy it and pray for a time when someday we can fully relax.

We took a trip to the National Cancer Institute down in Maryland to see one of the doctors Jonathan saw during his initial diagnosis. She gave us a rundown of what she believes to be good options for Jon, and thankfully, agreed with the current regimen. Besides being an amazing doctor, she really gave us something that most doctors are reluctant to give -- hope. Not just hope for long term survival... Jon and I have gotten that -- Hope for long term quality. Obviously, Jonathan wants to live as long as possible, and doctors have told us that technically since his cancer is strictly in the bone (so long as it doesn't spread elsewhere), it's not as life threatening as it would be for someone with typical DSRCT. So far, we've been able to manage it. But in accepting that survival, Jonathan has also had to accept the idea that he may quite possibly have to live with the pain for the rest of his life... and that is an idea that must seem very overwhelming. I really can't imagine someone telling me, "well you're going to have to fight HARD to live, and if you do, you'll still be in pain." My point is, this particular doctor not only said how well Jon is doing, she talked about the future...she mentioned that in a few years there could be studies done to see exactly how to target the specific receptors/gene/other stuff I don't understand that is responsible for Jonathan's cancer. "A few years." In a few years, there may be an answer. We aren't looking for a miracle, but perhaps something that just makes it a tiny bit easier for him...for both of us.

He doesn't know how proud I am of him. It really has little to do with cancer. It's just him. I am proud of everything he does...everything he accomplishes despite all the challenges he faces on a daily basis. I am proud of our relationship, and how strong we are. And I am so proud to be marrying him. Oh, did I mention we're engaged? :)

I know that every couple in love believes their love is something special, but there is something between Jonathan and I that I cannot quite form into words. Yes, we love one another -- immensely -- but there's a bond, a deep friendship, a sense of 'home' that I wish everyone could have the chance to experience (although I know only a lucky few ever do). Going through experiences like we have this past year and a half have really strengthened our relationship in a way that I don't think anything can break. The two of us are quite a team. I am truly thankful for having him in my life every single day.

I do wish he didn't have to work so hard. It's a strange feeling...lately I've almost been forgetting that he's sick. He looks so good, things are so "normal" that for a split second I forget that there's always a risk of things changing... he could get sicker (again) and although I know we can face anything together, I often wonder what it would feel like to not be worried, not to have those thoughts in the back of my mind... just for a day. I imagine I would feel lighter.

Sometimes when I'm sitting on the subway or walking around the city and I see a happy couple, I can't help but feel a small amount of anger... why do they get to be so carefree? Why do I have to fight to keep Jonathan? We belong together.. we are SO right for each other, shouldn't it all be that easy?? It makes me think of "Annabel Lee" by Edgar Allan Poe:

But we loved with a love that was more than love-

I and my Annabel Lee;
With a love that the winged seraphs of heaven

Coveted her and me.

I don't know...maybe the angels are jealous.

But then I realize that no one is safe from life. I don't know what that couple is really going through. Everyone has fears and things to stress about...everyone has pain and sadness in their lives... no one is safe from life changing in the blink of an eye. At least Jon and I know our enemy. Maybe that's an advantage. I guess my point is, enjoy every minute, every second of happiness. And don't assume a person's life is easy. I'm sure people have looked at me and judged or assumed but in reality they have no idea what's going on in my life.

We are so excited for the wedding and have already planned so much! It seems to keep getting bigger and bigger! Also, Jon's band has been performing in the city and the turnout has been awesome! I love watching him sing and do what he loves. Just another proud moment for his bride-to-be.

Love one another. Life is too short, moments are too fleeting to not let yourself love, and remind yourself how lucky you are.

"Those who love each other shall become invincible" -- Walt Whitman

Worth Fighting For

For a long time I've had this theory -- things happen when you least expect them to. My worriesome nature seems to stem from the idea that when you don't worry, when you don't think about worst case scenario, that's when bad things occur. I wouldn't really recommend living this way, but for a long time, I was a firm believer in this. What I have come to realize is this: bad things are going to happen whether you worry about them or not, and also, sometimes, every once in awhile, good things happen, too. Great things, in fact. I met Jonathan at a completely random, in some ways, inconvenient time in both of our lives. And every single day, I am thankful for it...and I'm pretty sure he is, too. I've probably 'worried' about Jonathan since the first day I met him... but that hasn't seemed to halt bad things from happening...

The last few days have been challenging. We received some less than optimal test results and are presented with yet another battle. I have no doubt in my mind that he is capable of winning that battle, but that doesn't change just how much it sucks that he has to fight at all. If you know him, you probably already love him, and if you don't know him, trust me, you would love him if you met him. It's an effect he has on people -- doesn't matter where he goes or what he's doing -- everyone falls in love with him. A person like that, with so much talent, so much to offer, doesn't deserve to go through any of what he's been through and continues to face. I guess no one really deserves to go through anything...but it seems to me, the people faced with the biggest issues, the scariest situations are the best people. I see that every single day in the children I take care of. These amazing kids...kids that I know could change the world if given the opportunity, are stuck fighting for their lives. It doesn't seem fair.

I felt like it would be a good idea to write a new post, given so much has gone on the last few days that perhaps it would be beneficial to me to share my emotions. But I find the words difficult to form... tears, however, come easily. Maybe they speak much more clearly than any words I can come up with.

I'm not afraid of the future. I know in my heart of hearts that he will be ok...more than ok. When I cry, it's mainly for what he will face in order to reach 'ok'. I cry for the disappointment he must be feeling; for the constant obstacles he must overcome. I cry for the fact that he worries more about me than he does about himself. Most of all, I cry for those rare moments I know he will inevitably face when he will not feel as strong as I know he is. I wish I could fix it for him or share some of the responsibility to win this fight, but all I can do is stand by him, and love him -- something that comes so easily to me it barely seems like I'm doing enough.

Life isn't fair. But despite the obvious reasons that I could be angry, or bitter... look at what I have. I have a love that some people never get to experience... a love that is worth fighting for. I have a love that will never be taken for granted. And because of that, I am beyond sure that there is still good in this world...that amazing things do happen. Jon and I always say we're going to 'have it all'. And we will, in every sense of the word. But we both also know that as safe and loved as we feel when we're together, as much of a protective cocoon our relationship can sometimes feel like, reality somehow finds a way of sneaking up on us... but we're always ready. We're a team, and ready to fight... for life, for love, for everything we want out of this world... and I can't help but smile thinking that together, we're unstoppable.

Six

Six months ago today my whole world changed. I met the most amazingly talented, sweet, and funny person. He swept me off my feet with his charm, and his wit. Six months ago today marked the start of the best six months of my life. Jon's incredible strength, his uniqueness, and honesty have brought so much to my life. He challenges me to be the best person I can be...He doesn't let me settle for less or get away with my (sometimes) immature antics. :) Six months may seem so short to some. But the intensity of our relationship and the strength we've developed together, in my opinion, puts us light years ahead of some couples who have been together for years. Trust me, if I were sitting here reading someone else's blog about her boyfriend of six months I'd probably roll my eyes. But maybe the saying is true -- when you know, you just know.
We've developed our own world together, often understanding each other without saying a word. And as I watch him develop his own life and accomplishments, I could not be more proud. The challenge he is facing and that we, in turn, are facing together have done nothing but show our true courage. On second thought, it is his incredible courage that allows me to be stronger. Maybe it helps us realize more than others just how important we are to one another... How valuable life is...How amazing it can be.
So I will always cherish the last 6 months...Our first 6 months of many... For it was the time I learned more about myself than I have in a long time. It was the time I learned to love another more than I thought possible. It was the time I have smiled more than I ever knew I could. It was the time I first started to be a part of his world; a time when I found my inner strength... And as cliche as it sounds, my other half.

"You are the best thing that's ever been mine."

Guardian Angels

I have always been an animal lover. I think that many animals have a sixth sense about them. When I was 7 years old, my parents bought a Jack Russel Terrier puppy. To this day, I remember hearing his tiny paws coming down our old apartment hallway and being so surprised. He looked like a pig in a way, with his pot belly and short little legs. He had black and white spots, and on his head was a white spot shaped like a diamond. Thus, to a 7-year-old little girl, his name was born. Being an only child, having Diamond was a blessing. He was my best friend, my protector, my playmate. His spirit never failed to make me smile. As I hit the challenging teen years he seemed to be the only 'person' who understood me at times. He was (and still is) my family in every sense of the word. When I was upset, he never left my side, and often tried to lick the tears off of my face. Leaving him at my parents' house was probably the hardest part of moving into my own apartment. Now, as his 17th birthday approaches (crazy, I know), I am aware that our memories together are probably limited. He has aged the most over the past year or so... he has trouble seeing, his back legs are weak, and his hearing is lacking. He has to be carried up the stairs and can no longer jump on and off the bed. People often ask why we haven't put him to sleep. For the record, I would never in a million years want to be selfish and keep him around suffering simply because letting him go would be too hard. Sincerely at this point, he still gets excited to go for a walk. He still snuggles next to me. He still knows when it's time to eat and will still bark for table food. He's still Diamond...just an older version. My hope is that when the time comes he will fall asleep wrapped up warm in his favorite blanket, curled up next to my parents and drift away. 17 years is a long time to know someone, whether person or animal. And I will surely not be the same without him. But how blessed I am to have had a guardian angel with me for 17 years.

My boyfriend's dog, Josie, seems to have smiliar qualities. When Jon is not feeling well, she will lay beside him with her head resting on his leg and not move for hours. When I was upset, she followed me up the stairs and licked the tears off my face...I felt like she was telling me, "Don't cry, everything is going to be alright." And surely she must know. <3

I don't usually mesh well with people who aren't animal lovers...it just doesn't really make sense to me why someone wouldn't like animals. Perhaps they aren't ready to be loved that way. Animals love us unconditionlly... without question, without expectation, regardless of what we look like, what we've done, where we've been. It is perhaps the purest form of love that exists.

Only Human

I usually blog about my emotions and my life pretty easily. Words seem to flow... Today I don't have any words. The emotions are there, the feelings are there, but I can't seem to verbalize.

I like stories. When I first became a nurse I would get so wrapped up in people's stories -- whether happy or tragic. I could empathize so well with a lot of my patients and their families. As time went on, I learned to still be involved but maintain just enough distance so I wasn't an emotional wreck 24-7.

When I started dating my boyfriend, I knew what I was getting myself into. I knew how hard it might be at times. I convinced my family and friends who were worried about me and my sanity that I was strong..that it wasn't that big of a deal. I could handle it. He was doing great, right? It was just another obstacle. I kept my feelings to myself. I smiled and told everyone things were great. And they were; they are. But I never told people how stressful/scary/frustrating/emotional it was for me. I never thought I'd be in the story... a part of someone's story, with no chance for maintaining distance or putting up walls.

When you love someone, it's impossible to stay away. It's impossible not to feel it in your own heart. I felt like (and still feel) I had no right to complain or feel sad because I chose to be in this story. But emotions usually win over being logical. Sometimes the tears come though I don't want them to, often without warning and without real reason. And sometimes for a few seconds I'm angry as opposed to the blessed feeling I usually have. Sometimes I'm scared though I know rationally there's no real reason to be. Sometimes it's hard to smile and be supportive when all I want to do is fix it. Sometimes everything is NOT ok. It's a very solitary feeling... I guess no one can really understand unless they're living it. I don't expect many of my friends to understand, and most avoid the topic all together. I can't really blame them since I put on the act that it's "no big deal". Ironically, I yell at my boyfriend for doing the very same thing. I tell him to express his feelings... to let himself be angry/sad/frustrated and not play off the situation like it's easier than it is. I tell him that constantly, and yet here I am, so afraid to do the same.

Now don't get me wrong, I am lucky in so many ways. Although a rough road, it could be a million times worse. There is no chance for me to lose him to this battle and for that I am more grateful than I could express in words. But despite the blessings, maybe it's ok for me to still be angry sometimes. We are amazing together..but sometimes I find myself looking with envy at couples who seem to have no obstacles to overcome.

Perhaps I put too much pressure on myself. I want to make things better for him. I want to be there for him. I want to understand when he's snappy with me. And I think i do a pretty good job, but in the end I think I need to let myself be human.

One thing needs to be made clear: there is NO doubt in my mind that this is where I want to be. I have a love that I believe most people never get to experience. I also think that this journey will make us stronger in the end. When you love someone, truly love someone, when you're a part of someone, you take on their troubles, their pain, their tears...and that is a feeling that cannot be described in words. To watch someone you love go through something difficult, to watch them hurt, and not be able to do anything about it, is the most helpless feeling in the world. And to know that his biggest wish is most likely to erase all of this journey hurts... he is my dream come true yet if his wish were granted, our relationship most likely would have never come to be. And on a deeper level, it hurts even more to know that if I could grant him that wish I would. If I could change things for him and give him his life back the way it 'should have' been, I would.

I wish I was stronger. I wish I could do a better job of keeping my feelings to myself because the last thing I ever want to do is make him feel worse... or give him the idea that I in any way resent being there for him.. because that is absolutely not the case. But as much as I am a part of him and what he's facing, he in turn, is a part of me... so despite the fact that I am not the one physically going through it, it's a different kind of hurt, but it still hurts. Knowing him so well, I know that reading this will probably hurt him...it will hurt him because he will somehow feel responsible for causing me pain. But the truth is, we're in it together. The smiles outweigh the tears; the calm overrules the anxiety; the love between us makes my heart complete. I will continue to find strength in myself that I did not know existed... and I will keep trying to give him the strength he needs.

Love conquers all. <3