Hi guys, Jon's fiancee, Laci here. Jon's been pretty sick lately so I included a link to my blog for a mini update. Hopefully, he'll be posting again soon. I'm sure he'll yell at me for going on his account. ;)
Much love to all of you for loving him. <3
http://laciluv.blogspot.com/2011/12/we-deserve-better-life.html
Saturday, December 10, 2011
Saturday, September 3, 2011
Jumping Around
I've been having a lot of dreams lately where I've been playing basketball or football, or just running in general, and everything feels the way it's supposed to feel. In my dreams, I feel normal. Then, I wake up, and I realize all over again that it was just a dream; that I can't run, I can't jump, or cut, or play basketball. I walk at what you might call a leisurely pace, if you're being nice, and one misstep can send me embarrassingly to the ground.
My goal, obviously, is to one day be able to do some of the things that feel so normal to me in my dreams. I know what it feels like to run and jump, to be athletic, which is why it's such a disappointment over and over again to wake up and realize I'm still stuck in this uncoordinated, pain-plagued body.
I will say that the past few days have been better in terms of pain, but that says nothing about what next week might bring. There's just no way of knowing.
After those months of high dose treatment, we switched over to something less taxing on my body for the summer, and it's been beneficial. One chemo pill and another growth inhibitor, and my body has felt better for a couple months. I'm sure the warm weather has helped as well, and I'm apprehensive about the oncoming cold, because I know how my bones can ache. But for now, I'm happy with the maintenance.
That being said, it's time to switch things up. I just don't want to become complacent with the treatment I'm on, which the doctors were skeptical about working in the first place, and then wake up in more pain than usual. So, I'd prefer to stay one step ahead of it and make the change before the tumor can catch up.
Of course, nobody really knows what's going to work, and what's going to be a waste of time. Then, there are always the surprises for which we can't account until they reveal themselves. Surprises, like the small amount of fluid around my heart, which was illuminated by yesterday's Echocardiogram. The initial thought is that it was caused by the growth inhibitor I've been taking, as that's a common side effect thereof, but it still came as a shock to me and is one more thing I don't want to have to deal with.
The most recent round of radiation has left me with a big bald map on the back of my head, as well as festering burns on the back of my hip and knee. You know, those wounds that are itchy as hell until you scratch them too much and then hurt like, well, horrible burns.
So, those are just a few of the things I've been confronting from a medical standpoint. But, I'm still trying my damnedest to live my life and do as much as possible.
Almost 6'6" has been performing, and performing well. There's just something special about being on stage, with a good band behind you, the spotlight on you, a mic in your hand, and a packed crowd that's thoroughly entertained. We keep writing new material, and the fact of the matter is, I can't find that kind of adrenaline rush anywhere else. Then again, that may have always been true.
And then there's something extra special about being on stage, holding that mic, feeling the butterflies, and then looking out into the crowd and seeing Laci's smile. I'm reminded that, good or bad, she's there, so nothing can really be that scary.
I don't know if the band is really back to where we were two years ago, like I wanted, but things are different. We have a real band behind us now, and we're doing shows, building a fan base, which we weren't doing before, and we even have merchandise. We're working on new recordings, with so much new material, and so many songs people want in their libraries that we simply can't provide. We've been approached by booking agents, who have taken an interest in our progress, and our manager is still waiting in the wings for us to be ready to take the world by storm.
I've decided to get back into real estate, as well. I got my license back, and I'm diving into the New York City market. I don't really know what to expect, but I'm looking forward to it, and that makes it worth it. I'm glad to have things to be excited about.
Speaking of things to be excited about, it's less than nine months from my wedding day. That's not even enough time to have a baby, for those who don't know. And, to be honest, time can't go fast enough. I tell her all the time, and I'm not afraid to say it; I would marry Laci tomorrow if given the opportunity. I suppose it would make all of our planning somewhat pointless, but I'm still incredibly anxious for the day to come.
I realize I'm jumping all over the place (at least I can still do that with my thoughts), but the point is, I think, that there's still a lot to look forward to. Not everything is dominated by being sick, though it often seems that way, and my situation is often overwhelming. And it's hard to keep talking about it, especially when I don't want to fully accept the reality as it is. But life goes on, day by day, and it only takes a few important things to make it well worth living.
My goal, obviously, is to one day be able to do some of the things that feel so normal to me in my dreams. I know what it feels like to run and jump, to be athletic, which is why it's such a disappointment over and over again to wake up and realize I'm still stuck in this uncoordinated, pain-plagued body.
I will say that the past few days have been better in terms of pain, but that says nothing about what next week might bring. There's just no way of knowing.
After those months of high dose treatment, we switched over to something less taxing on my body for the summer, and it's been beneficial. One chemo pill and another growth inhibitor, and my body has felt better for a couple months. I'm sure the warm weather has helped as well, and I'm apprehensive about the oncoming cold, because I know how my bones can ache. But for now, I'm happy with the maintenance.
That being said, it's time to switch things up. I just don't want to become complacent with the treatment I'm on, which the doctors were skeptical about working in the first place, and then wake up in more pain than usual. So, I'd prefer to stay one step ahead of it and make the change before the tumor can catch up.
Of course, nobody really knows what's going to work, and what's going to be a waste of time. Then, there are always the surprises for which we can't account until they reveal themselves. Surprises, like the small amount of fluid around my heart, which was illuminated by yesterday's Echocardiogram. The initial thought is that it was caused by the growth inhibitor I've been taking, as that's a common side effect thereof, but it still came as a shock to me and is one more thing I don't want to have to deal with.
The most recent round of radiation has left me with a big bald map on the back of my head, as well as festering burns on the back of my hip and knee. You know, those wounds that are itchy as hell until you scratch them too much and then hurt like, well, horrible burns.
So, those are just a few of the things I've been confronting from a medical standpoint. But, I'm still trying my damnedest to live my life and do as much as possible.
Almost 6'6" has been performing, and performing well. There's just something special about being on stage, with a good band behind you, the spotlight on you, a mic in your hand, and a packed crowd that's thoroughly entertained. We keep writing new material, and the fact of the matter is, I can't find that kind of adrenaline rush anywhere else. Then again, that may have always been true.
And then there's something extra special about being on stage, holding that mic, feeling the butterflies, and then looking out into the crowd and seeing Laci's smile. I'm reminded that, good or bad, she's there, so nothing can really be that scary.
I don't know if the band is really back to where we were two years ago, like I wanted, but things are different. We have a real band behind us now, and we're doing shows, building a fan base, which we weren't doing before, and we even have merchandise. We're working on new recordings, with so much new material, and so many songs people want in their libraries that we simply can't provide. We've been approached by booking agents, who have taken an interest in our progress, and our manager is still waiting in the wings for us to be ready to take the world by storm.
I've decided to get back into real estate, as well. I got my license back, and I'm diving into the New York City market. I don't really know what to expect, but I'm looking forward to it, and that makes it worth it. I'm glad to have things to be excited about.
Speaking of things to be excited about, it's less than nine months from my wedding day. That's not even enough time to have a baby, for those who don't know. And, to be honest, time can't go fast enough. I tell her all the time, and I'm not afraid to say it; I would marry Laci tomorrow if given the opportunity. I suppose it would make all of our planning somewhat pointless, but I'm still incredibly anxious for the day to come.
I realize I'm jumping all over the place (at least I can still do that with my thoughts), but the point is, I think, that there's still a lot to look forward to. Not everything is dominated by being sick, though it often seems that way, and my situation is often overwhelming. And it's hard to keep talking about it, especially when I don't want to fully accept the reality as it is. But life goes on, day by day, and it only takes a few important things to make it well worth living.
Thursday, June 9, 2011
Love Love Love
I know what it feels like to wake up in pain. In fact, over the past month or so, my pain has fluctuated so much I have no idea what to think. One night on a dormitory mattress at my sister's college graduation proved too much for my body to handle; I was sore for weeks. Speculation about the tumor and what that could mean just serves to drive a person nuts, and I've learned to live from day to day, treating each as its own blessing.
I'm happy to say that since this last round of chemo, the pain in my back has diminished to at least its pre-dorm mattress levels, and living each day in less pain really does make living so much easier and so much more enjoyable.
One of those things I've been enjoying, rather than waking up in pain, is waking up in love. I've been waking up every day in the midst of uncertainty, yet overwhelmed by love like I never knew was possible. I know I've said it before, but Laci reminds me that I can have everything there is to have in this world, and I feel so lucky to be planning to have it all with her. I'm not saying that choosing color palettes for bridesmaids dresses and flowers has become my favorite pastime; my eyes still occasionally wander back towards the television (shh, don't tell), but I'm excited for things I've never been excited for before. I miss her before she leaves my side, and I revel in the fact that only a few more hours stand between us and another hello kiss.
I feel foolish, partially for saying this here. I feel silly because I've never felt it before. I sit here and think about her and start laughing over things that aren't really funny but stand out to me as part of who she is; a part of me. Yes, I feel aches and pains, and I still feel scared sometimes. But it's all overshadowed by love. I feel love. Every day. For that I am eternally thankful.
I'm happy to say that since this last round of chemo, the pain in my back has diminished to at least its pre-dorm mattress levels, and living each day in less pain really does make living so much easier and so much more enjoyable.
One of those things I've been enjoying, rather than waking up in pain, is waking up in love. I've been waking up every day in the midst of uncertainty, yet overwhelmed by love like I never knew was possible. I know I've said it before, but Laci reminds me that I can have everything there is to have in this world, and I feel so lucky to be planning to have it all with her. I'm not saying that choosing color palettes for bridesmaids dresses and flowers has become my favorite pastime; my eyes still occasionally wander back towards the television (shh, don't tell), but I'm excited for things I've never been excited for before. I miss her before she leaves my side, and I revel in the fact that only a few more hours stand between us and another hello kiss.
I feel foolish, partially for saying this here. I feel silly because I've never felt it before. I sit here and think about her and start laughing over things that aren't really funny but stand out to me as part of who she is; a part of me. Yes, I feel aches and pains, and I still feel scared sometimes. But it's all overshadowed by love. I feel love. Every day. For that I am eternally thankful.
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