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.
Monday, May 16, 2011
Sarcoma & Bone Cancer Research Foundation Association needs your help mysportsdreams.com/digital/ebrochure/YRAYCP Check out this eBrochure with news about Jonathan Swartz and Sarcoma & Bone Cancer Research Foundation Association. I just made a contribution to support the team and received $50 in free dining.
Sarcoma & Bone Cancer Research Foundation Association needs your help
mysportsdreams.com/digital/ebrochure/YRAYCP
Check out this eBrochure with news about Jonathan Swartz and Sarcoma & Bone Cancer Research Foundation Association. I just made a contribution to support the team and received $50 in free dining.
mysportsdreams.com/digital/ebrochure/YRAYCP
Check out this eBrochure with news about Jonathan Swartz and Sarcoma & Bone Cancer Research Foundation Association. I just made a contribution to support the team and received $50 in free dining.
Thursday, May 5, 2011
Where's My Hair?
I thought it appropriate to mention that the last scans were good. (Mild celebration.) I'm heading back in the direction I was headed in the first time through high dose, and my reward was, of course, more high dose (eventually; see story). At least a few more rounds, they said. In fact, their recommendation was to keep doing high dose "until I can't take it anymore."
The very next round, the fourth, sent me spinning on a four-day barf-fest spent predominantly in the fetal position, in which I lost 10 pounds, but the fact of the matter is that they don't really know what to do after we finish the however-many rounds of high dose to "get things back in check." Problem is: I don't know how much longer I can take it!
So, after my 20th (total) round of high dose chemo, I can adequately say that I've had enough of it and am looking forward to finding something else that works. I have, in the meantime, agreed to at least two more rounds, which will make six on this regimen, since we did those last scans after three. And I'll work on those docs to have a solid plan in place when the time comes (again) to put this high dose chemo in the rearview.
The very next round, the fourth, sent me spinning on a four-day barf-fest spent predominantly in the fetal position, in which I lost 10 pounds, but the fact of the matter is that they don't really know what to do after we finish the however-many rounds of high dose to "get things back in check." Problem is: I don't know how much longer I can take it!
So, after my 20th (total) round of high dose chemo, I can adequately say that I've had enough of it and am looking forward to finding something else that works. I have, in the meantime, agreed to at least two more rounds, which will make six on this regimen, since we did those last scans after three. And I'll work on those docs to have a solid plan in place when the time comes (again) to put this high dose chemo in the rearview.
Monday, April 4, 2011
Hello Again, High-Dose; Big Changes
I knew what I was getting myself into when I agreed to go back on high-dose chemo. The vomiting, the neutropenia, the fatigue, the feeling as if I'd been hit by a Mack truck, etc. The thing is, it had gotten to a point where we needed to do something drastic to get everything back under control.
We decided to do a few rounds of a high-dose regimen, since we knew it (high-dose) had worked well in the past, and to pair it with a round of radiation to my skull.
I'm now facing an upcoming third round of the chemo, which will be followed by scans and, I hope, a celebration and transition to something less severe. The fact of the matter is, though, that I feel a hell of a lot better than I did before we started this high-dose. The treatment seems to have worked well on my head, as my headaches have, for the most part, disappeared, if only for the moment. My pain is diminished, and I'd love to keep it where it is. Obviously, in an ideal world, it would get even better, but as long as it's where it is, I'll be happy with it staying put, as long as it doesn't get worse.
I hadn't forgotten what high-dose chemo feels like. I don't think it's something anyone can forget, and I'm pretty sure I've said that before. But this time, my doctor agreed to do it outpatient, with pre- and post-hydration administered by my beautiful, wonderful (at-the-time-) girlfriend Laci.
The difference between this and the last time I was going through high-dose chemo is that the last time, I thought my only option was to allow my life to consist of receiving chemo and recovering from it. If I were smart, that would still be my only option. Nevertheless, I'm determined to keep my job, keep singing in the band, and enjoy this wondrous city in which I live, all while going through high-dose chemo. I know, I know, I can't push myself too hard. I really am trying not to, but I'm also determined to continue living my life. I've already given it away for so long.
So, for this radiation treatment, since it was being aimed at my skull (my forehead and top of head are, at the moment, about 3 different colors and peeling like a snake changing outfits), I was required to take a particular steroid of which I had some not-so-fond memories during the original chemo. In fact, during that chemo, I made the executive decision (without consulting anyone, no less) to abandon it and just deal with a little more nausea once it (the steroid) had become too much for me to handle. Small price to pay, I know, but imagine violent bursts of anger, sudden emotional breakdowns and inconsolable grief, and having a heartbeat that is so forceful that it makes it impossible to ever relax. I was on edge for this entire round of radiation treatment.
The doctors told me to "taper off" the drug after the end of radiation. In other words, not to go "cold turkey" with them, because that could be dangerous. And, by the end of the treatment, after a few weeks of feeling like the Incredible Hulk meets (insert any baby who cries a lot), I couldn't wait to be off of this drug. I tapered it over the course of four or five days, as directed, but I don't think that was enough time.
I woke up two days later, two days before one of the biggest shows my band has done, with a fever of 102.
The first assumption was that I was neutropenic from the chemo, so when I got to the hospital and they took my blood counts, the doctors all guessed that my counts were dropping rather than improving, which they really were, in actuality. But a day and a half in the hospital left me aggravated (with the hospital, of course), without answers (they couldn't find anything to cause the fever), and anxious to go home, though I was taking with me a low-grade fever.
Of course, my low-grade fever stayed for the weekend, and decided to turn into another 102 last Monday morning, sending me to the hospital, yet again, on a work day.
Radiation had caused some small bumps on my head, which we thought were just a reaction to the rays, which they may have been, but I also developed these spots all over my head and neck. Conveniently, they had spread to my back and belly this very same day.
So we went to see dermatology after our trip to the clinic, where, of course, my fever had disappeared upon arrival, which resulted in being told to monitor the situation, but nothing was to be done at the moment. However, at dermatology, I had one of those spots biopsied, and it turns out I should be calling them "pox." It seems that somehow, even though I had the Chicken Pox when I was little, my low white count made me susceptible to them again, and here I am adding 3 considerably large pills to my already-comprehensive daily pill menu.
I mean, come on. Really? Steroid withdrawal, so we're talking nausea, vomiting, temperatures fluctuating from 96 to 102 degrees, and I get the Chicken Pox, which I've already had!? I swear, this must be somebody's sick joke. Whoever's holding my strings up there while I dance around down here has a very sick sense of humor.
Approaching round number two, I knew I had to do my very best to stay out of the hospital. My band's show was scheduled for the Friday night ten days after the chemo infusion. I knew going into it that the timing was about the worst it could possibly be, and we should never have booked the show for that date, but that's a whole other story that I will not be getting into. Anyway, so I'm planning for a blood infusion to boost my energy before the show, and I'm taking the pills and avoiding contact, and doing everything in my power to stay healthy, avoid neutropenia, and of course, to avoid the hospital.
Four days before the show, I woke up with a sore throat. It wasn't terrible, so I figured it was a change-of-seasons thing; something I'd seen before, but was nothing to worry about. I often wake up with a sore throat that goes away over the course of a day, and I think that's pretty common.
Three days before the show, I woke up with laryngitis-like symptoms, except mine, in addition to painful swallowing and a lack of voice, were accompanied by white spots on the back of my throat. Easy diagnosis for my doctor; it was Thrush. Thrush is a fungal infection that happens to people during chemo, but can be prevented by taking an anti-fungal medication. I had been on this medication during the first fourteen rounds of high-dose, and had wondered why I wasn't on it during this regimen, especially because it goes along with the steroid and the radiation I was also doing.
"A minor oversight," they called it.
Well, the minor oversight, along with fever, cost me my show that Friday night, and my voice is still only about halfway recovered. There are inevitably a few times a day when I sound like I'm going through puberty.
You can probably guess that I was just a little bit pissed off about missing that show. Getting up there on the mic is one of my escapes from this stuff, and a "minor oversight," one that could have been avoided if I had been taking the drugs I was supposed to be taking, kept me from it. Forgive me if I have trouble seeing it as a "minor oversight."
The gig turned out great for the band, though. They managed the show without me, though we promised to never do a show without a member again, and the show went reasonably well. It seems to have opened some doors for us, which is great. My only concern was that we keep the wheels from falling off, but it turns out we're going in the right direction.
Going in the right direction. It's all we can ask for, right? I've ceased to believe that hospitals can run smoothly; there are just too many ways to fall in between the cracks.
They put me in an isolation room today to avoid exposing the other children to my Chicken Pox, which I understand, and I'll never complain about privacy, but they forgot me in there for an hour! All I wanted was to have blood drawn and get out of there!
I don't know if I'll ever be able to accept the amount of time I spend in that place as part of my life, but there are so many other parts of my life, it's tough to complain.
You may have noticed above that I mentioned my (at-the-time-) girlfriend Laci. Well, the at-the-time part of it was not because we are no longer together. In fact, quite the opposite. I proposed a little over a week ago. And, while I was unaware that wedding planning began immediately, and I mean immediately, after an accepted proposal, I have been incredibly happy. The smile on my face right now is so big that it kind of hurts, and she's just sitting next to me, unaware of anything I'm saying.
What I'm saying is that I will, we will, have everything. She gives me that.
Around our one-year anniversary (we're not exactly sure when it is), I told her that a year ago I met an angel, and that I somehow managed to keep her around. I meant that. I think that if someone can make you feel so loved, and makes you feel those things you didn't know were possible to feel in this world, then that person might as well be an angel.
Laci is also very perceptive. I may not have done the best job of hiding it (the man who sold me the ring stopped by the apartment to let me pick out the setting when Laci was home {he was a family member, not just some guy I met in the diamond district whom I invited over for candy and cake, mind you}). Laci also knew I was trying to coordinate a night to see her parents to talk about it before I popped the question, which I did. Talk to her parents, that is. I also popped the question. She said "yes." I didn't care that she knew I was eventually going to do it, or that I had a ring hidden somewhere in the apartment. I liked making her squirm about it. All I cared was that she said "yes" whenever I did ask her.
I guess feeling like we're going in the right direction is all we can really ask for. Going in the wrong direction is obviously scary, and complacency rarely makes us happy. It can mean so many things to different people, so I guess it's important to examine even small aspects of our lives and try to make them better. One day at a time.
We decided to do a few rounds of a high-dose regimen, since we knew it (high-dose) had worked well in the past, and to pair it with a round of radiation to my skull.
I'm now facing an upcoming third round of the chemo, which will be followed by scans and, I hope, a celebration and transition to something less severe. The fact of the matter is, though, that I feel a hell of a lot better than I did before we started this high-dose. The treatment seems to have worked well on my head, as my headaches have, for the most part, disappeared, if only for the moment. My pain is diminished, and I'd love to keep it where it is. Obviously, in an ideal world, it would get even better, but as long as it's where it is, I'll be happy with it staying put, as long as it doesn't get worse.
I hadn't forgotten what high-dose chemo feels like. I don't think it's something anyone can forget, and I'm pretty sure I've said that before. But this time, my doctor agreed to do it outpatient, with pre- and post-hydration administered by my beautiful, wonderful (at-the-time-) girlfriend Laci.
The difference between this and the last time I was going through high-dose chemo is that the last time, I thought my only option was to allow my life to consist of receiving chemo and recovering from it. If I were smart, that would still be my only option. Nevertheless, I'm determined to keep my job, keep singing in the band, and enjoy this wondrous city in which I live, all while going through high-dose chemo. I know, I know, I can't push myself too hard. I really am trying not to, but I'm also determined to continue living my life. I've already given it away for so long.
So, for this radiation treatment, since it was being aimed at my skull (my forehead and top of head are, at the moment, about 3 different colors and peeling like a snake changing outfits), I was required to take a particular steroid of which I had some not-so-fond memories during the original chemo. In fact, during that chemo, I made the executive decision (without consulting anyone, no less) to abandon it and just deal with a little more nausea once it (the steroid) had become too much for me to handle. Small price to pay, I know, but imagine violent bursts of anger, sudden emotional breakdowns and inconsolable grief, and having a heartbeat that is so forceful that it makes it impossible to ever relax. I was on edge for this entire round of radiation treatment.
The doctors told me to "taper off" the drug after the end of radiation. In other words, not to go "cold turkey" with them, because that could be dangerous. And, by the end of the treatment, after a few weeks of feeling like the Incredible Hulk meets (insert any baby who cries a lot), I couldn't wait to be off of this drug. I tapered it over the course of four or five days, as directed, but I don't think that was enough time.
I woke up two days later, two days before one of the biggest shows my band has done, with a fever of 102.
The first assumption was that I was neutropenic from the chemo, so when I got to the hospital and they took my blood counts, the doctors all guessed that my counts were dropping rather than improving, which they really were, in actuality. But a day and a half in the hospital left me aggravated (with the hospital, of course), without answers (they couldn't find anything to cause the fever), and anxious to go home, though I was taking with me a low-grade fever.
Of course, my low-grade fever stayed for the weekend, and decided to turn into another 102 last Monday morning, sending me to the hospital, yet again, on a work day.
Radiation had caused some small bumps on my head, which we thought were just a reaction to the rays, which they may have been, but I also developed these spots all over my head and neck. Conveniently, they had spread to my back and belly this very same day.
So we went to see dermatology after our trip to the clinic, where, of course, my fever had disappeared upon arrival, which resulted in being told to monitor the situation, but nothing was to be done at the moment. However, at dermatology, I had one of those spots biopsied, and it turns out I should be calling them "pox." It seems that somehow, even though I had the Chicken Pox when I was little, my low white count made me susceptible to them again, and here I am adding 3 considerably large pills to my already-comprehensive daily pill menu.
I mean, come on. Really? Steroid withdrawal, so we're talking nausea, vomiting, temperatures fluctuating from 96 to 102 degrees, and I get the Chicken Pox, which I've already had!? I swear, this must be somebody's sick joke. Whoever's holding my strings up there while I dance around down here has a very sick sense of humor.
Approaching round number two, I knew I had to do my very best to stay out of the hospital. My band's show was scheduled for the Friday night ten days after the chemo infusion. I knew going into it that the timing was about the worst it could possibly be, and we should never have booked the show for that date, but that's a whole other story that I will not be getting into. Anyway, so I'm planning for a blood infusion to boost my energy before the show, and I'm taking the pills and avoiding contact, and doing everything in my power to stay healthy, avoid neutropenia, and of course, to avoid the hospital.
Four days before the show, I woke up with a sore throat. It wasn't terrible, so I figured it was a change-of-seasons thing; something I'd seen before, but was nothing to worry about. I often wake up with a sore throat that goes away over the course of a day, and I think that's pretty common.
Three days before the show, I woke up with laryngitis-like symptoms, except mine, in addition to painful swallowing and a lack of voice, were accompanied by white spots on the back of my throat. Easy diagnosis for my doctor; it was Thrush. Thrush is a fungal infection that happens to people during chemo, but can be prevented by taking an anti-fungal medication. I had been on this medication during the first fourteen rounds of high-dose, and had wondered why I wasn't on it during this regimen, especially because it goes along with the steroid and the radiation I was also doing.
"A minor oversight," they called it.
Well, the minor oversight, along with fever, cost me my show that Friday night, and my voice is still only about halfway recovered. There are inevitably a few times a day when I sound like I'm going through puberty.
You can probably guess that I was just a little bit pissed off about missing that show. Getting up there on the mic is one of my escapes from this stuff, and a "minor oversight," one that could have been avoided if I had been taking the drugs I was supposed to be taking, kept me from it. Forgive me if I have trouble seeing it as a "minor oversight."
The gig turned out great for the band, though. They managed the show without me, though we promised to never do a show without a member again, and the show went reasonably well. It seems to have opened some doors for us, which is great. My only concern was that we keep the wheels from falling off, but it turns out we're going in the right direction.
Going in the right direction. It's all we can ask for, right? I've ceased to believe that hospitals can run smoothly; there are just too many ways to fall in between the cracks.
They put me in an isolation room today to avoid exposing the other children to my Chicken Pox, which I understand, and I'll never complain about privacy, but they forgot me in there for an hour! All I wanted was to have blood drawn and get out of there!
I don't know if I'll ever be able to accept the amount of time I spend in that place as part of my life, but there are so many other parts of my life, it's tough to complain.
You may have noticed above that I mentioned my (at-the-time-) girlfriend Laci. Well, the at-the-time part of it was not because we are no longer together. In fact, quite the opposite. I proposed a little over a week ago. And, while I was unaware that wedding planning began immediately, and I mean immediately, after an accepted proposal, I have been incredibly happy. The smile on my face right now is so big that it kind of hurts, and she's just sitting next to me, unaware of anything I'm saying.
What I'm saying is that I will, we will, have everything. She gives me that.
Around our one-year anniversary (we're not exactly sure when it is), I told her that a year ago I met an angel, and that I somehow managed to keep her around. I meant that. I think that if someone can make you feel so loved, and makes you feel those things you didn't know were possible to feel in this world, then that person might as well be an angel.
Laci is also very perceptive. I may not have done the best job of hiding it (the man who sold me the ring stopped by the apartment to let me pick out the setting when Laci was home {he was a family member, not just some guy I met in the diamond district whom I invited over for candy and cake, mind you}). Laci also knew I was trying to coordinate a night to see her parents to talk about it before I popped the question, which I did. Talk to her parents, that is. I also popped the question. She said "yes." I didn't care that she knew I was eventually going to do it, or that I had a ring hidden somewhere in the apartment. I liked making her squirm about it. All I cared was that she said "yes" whenever I did ask her.
I guess feeling like we're going in the right direction is all we can really ask for. Going in the wrong direction is obviously scary, and complacency rarely makes us happy. It can mean so many things to different people, so I guess it's important to examine even small aspects of our lives and try to make them better. One day at a time.
Tuesday, February 1, 2011
A New Chapter
I recently finished writing a song called "Better." I had been trying for so long to put into words and melody the deep disappointment and frustration I've been feeling since this whole thing began. And while I managed to get so much emotion out of myself and into something tangible, I still feel like there's an ocean inside of me, and I'll just have to wait for it to come out when it's ready.
"Every time I think it's getting better, another part is broken apart, and I can't do much better."
That's the first line of the song; the first thing that came out of me when I sat down and plugged out the chords on the keyboard. It sums everything up so well. For a moment, I think things are improving. Then I remember my reality.
Now and then I wish for something better
My heart is open
We all make mistakes but I'm a sinner
Keeps playing all night long
Like a voice from down the hall
Hoarse, strained and distant like some cold, desperate whisper
Saying tears will make you sane
But it hurts just the same
Pills numb the pain, but they just don't make it better
The whole song came together in small pieces; that's just the second verse, but it expresses my feelings pretty well. I've realized that I can try as hard as I possibly can, go through every day as best I can, but in the end there are just so many things that are out of my control.
I was talking to my dad the other night, and at the end of the conversation I told him goodnight, and that I could promise to be there the next night and say the same thing. And I know that every night I get to say goodnight, I'll wake up the next day, go through the day, and be able to say goodnight again that night. I'll keep doing that until I can't anymore; that's the only way I know how to go through life. It's stripped down to the very bare basics of it; one day at a time.
A few months ago, I started working part-time at a fundraising company called My Sports Dreams. The company started out working with just youth, high school, and college sports teams, helping them raise money through mail campaigns, and now we help all kinds of groups and organizations outside of the sports realm as well. Laci and I recently moved into an apartment together in the city, and my bosses have been kind enough to let me do my work from home.
I'm so incredibly lucky to have Laci in my life. She warms my heart and reminds me every day that things are going to be okay. Many times I forget; it's hard to keep telling myself things will work out.
Before I started writing tonight, I went back and read some of the things I wrote when I was just starting this blog. I was neutropenic; I could barely leave the house; my life consisted of chemo and recovering from chemo; yet I was so optimistic.
I've heard a million times that I'm "a special case" and that my cancer "presents differently" than the diagnosis normally does, and I always thought that was working in my favor. I've already reported that the old "low dose" chemo wasn't working, so we had to switch it up. Well, we gave that a few months and it wasn't working, either.
Now we're sort of at a crossroads. I'm on some growth inhibitor to try and keep the tumor's spread at bay for a moment, and I'm off to Dana-Farber this week to meet with some new doctors. Maybe they have some fresh perspective.
It's difficult to face the morbid possibility as a possibility, refuse to accept it, and keep believing every day that this thing will get turned around. But the thing is, drugs have worked before, if only for a little while, and I know what it feels like for them to work. Pair that with the fact that I'm not dying! Not right now, and not any time soon. I have reason to believe some drugs can work again, we just have to find the right ones.
The scary thing about these tumors is that they can "hide" when they sense danger, then spring to life again when the coast is clear. But to me, I don't care if they're hiding, as long as they're not reproducing like jungle bunnies and trying to kill me.
Right before Laci and I moved into our apartment, I went to Israel on Birthright. In hindsight, it was probably not the best thing for my body. Airplanes, crammed buses, a lot of walking around; I went because I didn't know when or if I'd ever get that opportunity again. I'm glad I got to see the country; the place from whence life sprang, religion began, and all of that. It was fascinating to see the hills where rivers used to run, in a country now suffering from a terrible water shortage. We saw villages enduring daily bomb threats, where playgrounds require bomb shelters and shrapnel is still sticking out of the ground.
I have always admired and respected those who serve and have served in the armed forces. I was anxious to meet the Israeli soldiers, a few of whom traveled with us, and to observe their demeanor and outlook. And, in all honesty, when I met them and explored their country, I thought to myself, "So, this is your battle."
Sure, it's a whole different world for those kids over there. That is what they are, after all. Kids. Ages 18-21 in most cases. And some of them never get to leave the armed forces. But most of them "graduate," move on, carry on with their lives. I was jealous of that.
I've always been in pain. It's just a part of my daily life and I'm dealing with it. My bones ache, and I'm adjusting to the brand new side effects of this new drug. I had an MRI on my head to make sure the tumor wasn't in my brain. And while it isn't in my brain, it's on my brain, under my skull, as well as pushing against my skull in a few different places. All of them hurt.
The doctors said the tumor sitting on my brain isn't an immediate threat to me. All of my neurological functions are fine, and apparently it has "space to grow." Surgery is an option; they could remove it, but right now the risks are pretty heavy in relation to the potential benefits.
It just feels like there's a gun being held to my head and the trigger could be pulled at any minute. Like everything could go white and that's it. Maybe that's a reason to live every minute of every day like it might be my last. Maybe it's a reason to break down and cry. I believe both.
The pain fluctuates on a daily basis. When I got home from Israel, my back was all tightened up like a twisted sponge. While that has gotten better, I still feel a lot of the time that being asleep is better than being awake. Being asleep doesn't hurt, though it's usually narcotically induced, and every time I wake up I get to remember the pain as it sinks in.
The reality remains that we have to find something that works. I know there are drugs out there that will; possibly the one I'm on right now, it's too early to tell. I am aware that medical miracles happen all the time, and all I have to do is stick around until they find one for me. I also realize that even if and when another drug begins to work, the tumor may just be "hiding" again until it senses the right moment to expose itself.
These are facts. I'm not trying to be morbid, I'm just being honest. That being said, I will NEVER accept not beating this thing. Not ever. I will fight until the bitter end. I dream of holding all of this tumor in a jar and burning it; watching it sizzle, listening to it hiss as it disintegrates.
I have things to keep fighting for, too. The band is doing great; we just started doing shows again. I need to see how far we can go. Our material is better than it's ever been.
I want it all
Some kind of wonderful
Make me right when I fall
Put my feet on the ground
So far between, so far apart
What I didn't know
I should have seen
Right from the start
That's the chorus of "Better." I want it all. I want to have everything there is to have in this life. There is no reason that someone else should have it and I shouldn't. I refuse to accept that. Laci reminds me that I can still have all of that. I can still have a life, a wife, a career, a family, a future. That gives me the strength to keep going every single day, even if it is just one day at a time.
I feel like I'm starting a new chapter. Like I said before, I don't know the end of my story anymore, and I suppose that's how it's meant to be. I'm in a new place, going for new treatment, looking for a turnaround, (hopefully) picking up on a blossoming music career...it's exciting, yet incredibly scary at the same time. There's just so much uncertainty, as there's always been.
I used to be scared on stage, but not anymore. Why would I be scared of holding a mic and singing in front of people? I have much bigger things to fear, and I'm not scared of those things.
I try to live without fear. "The most important thing is never to be scared at all." That's a line from a popular Israeli song. It's not a perfect translation, but you get the idea.
The truth is, I do get scared. Sometimes I let it all sink in, and I'm overwhelmed. As the days go by, it doesn't get any easier to believe that this is all happening to me. Then I regroup and somehow continue to put one foot in front of the other. One step at a time. One day at a time. It's the only way I know how.
"Every time I think it's getting better, another part is broken apart, and I can't do much better."
That's the first line of the song; the first thing that came out of me when I sat down and plugged out the chords on the keyboard. It sums everything up so well. For a moment, I think things are improving. Then I remember my reality.
Now and then I wish for something better
My heart is open
We all make mistakes but I'm a sinner
Keeps playing all night long
Like a voice from down the hall
Hoarse, strained and distant like some cold, desperate whisper
Saying tears will make you sane
But it hurts just the same
Pills numb the pain, but they just don't make it better
The whole song came together in small pieces; that's just the second verse, but it expresses my feelings pretty well. I've realized that I can try as hard as I possibly can, go through every day as best I can, but in the end there are just so many things that are out of my control.
I was talking to my dad the other night, and at the end of the conversation I told him goodnight, and that I could promise to be there the next night and say the same thing. And I know that every night I get to say goodnight, I'll wake up the next day, go through the day, and be able to say goodnight again that night. I'll keep doing that until I can't anymore; that's the only way I know how to go through life. It's stripped down to the very bare basics of it; one day at a time.
A few months ago, I started working part-time at a fundraising company called My Sports Dreams. The company started out working with just youth, high school, and college sports teams, helping them raise money through mail campaigns, and now we help all kinds of groups and organizations outside of the sports realm as well. Laci and I recently moved into an apartment together in the city, and my bosses have been kind enough to let me do my work from home.
I'm so incredibly lucky to have Laci in my life. She warms my heart and reminds me every day that things are going to be okay. Many times I forget; it's hard to keep telling myself things will work out.
Before I started writing tonight, I went back and read some of the things I wrote when I was just starting this blog. I was neutropenic; I could barely leave the house; my life consisted of chemo and recovering from chemo; yet I was so optimistic.
I've heard a million times that I'm "a special case" and that my cancer "presents differently" than the diagnosis normally does, and I always thought that was working in my favor. I've already reported that the old "low dose" chemo wasn't working, so we had to switch it up. Well, we gave that a few months and it wasn't working, either.
Now we're sort of at a crossroads. I'm on some growth inhibitor to try and keep the tumor's spread at bay for a moment, and I'm off to Dana-Farber this week to meet with some new doctors. Maybe they have some fresh perspective.
It's difficult to face the morbid possibility as a possibility, refuse to accept it, and keep believing every day that this thing will get turned around. But the thing is, drugs have worked before, if only for a little while, and I know what it feels like for them to work. Pair that with the fact that I'm not dying! Not right now, and not any time soon. I have reason to believe some drugs can work again, we just have to find the right ones.
The scary thing about these tumors is that they can "hide" when they sense danger, then spring to life again when the coast is clear. But to me, I don't care if they're hiding, as long as they're not reproducing like jungle bunnies and trying to kill me.
Right before Laci and I moved into our apartment, I went to Israel on Birthright. In hindsight, it was probably not the best thing for my body. Airplanes, crammed buses, a lot of walking around; I went because I didn't know when or if I'd ever get that opportunity again. I'm glad I got to see the country; the place from whence life sprang, religion began, and all of that. It was fascinating to see the hills where rivers used to run, in a country now suffering from a terrible water shortage. We saw villages enduring daily bomb threats, where playgrounds require bomb shelters and shrapnel is still sticking out of the ground.
I have always admired and respected those who serve and have served in the armed forces. I was anxious to meet the Israeli soldiers, a few of whom traveled with us, and to observe their demeanor and outlook. And, in all honesty, when I met them and explored their country, I thought to myself, "So, this is your battle."
Sure, it's a whole different world for those kids over there. That is what they are, after all. Kids. Ages 18-21 in most cases. And some of them never get to leave the armed forces. But most of them "graduate," move on, carry on with their lives. I was jealous of that.
I've always been in pain. It's just a part of my daily life and I'm dealing with it. My bones ache, and I'm adjusting to the brand new side effects of this new drug. I had an MRI on my head to make sure the tumor wasn't in my brain. And while it isn't in my brain, it's on my brain, under my skull, as well as pushing against my skull in a few different places. All of them hurt.
The doctors said the tumor sitting on my brain isn't an immediate threat to me. All of my neurological functions are fine, and apparently it has "space to grow." Surgery is an option; they could remove it, but right now the risks are pretty heavy in relation to the potential benefits.
It just feels like there's a gun being held to my head and the trigger could be pulled at any minute. Like everything could go white and that's it. Maybe that's a reason to live every minute of every day like it might be my last. Maybe it's a reason to break down and cry. I believe both.
The pain fluctuates on a daily basis. When I got home from Israel, my back was all tightened up like a twisted sponge. While that has gotten better, I still feel a lot of the time that being asleep is better than being awake. Being asleep doesn't hurt, though it's usually narcotically induced, and every time I wake up I get to remember the pain as it sinks in.
The reality remains that we have to find something that works. I know there are drugs out there that will; possibly the one I'm on right now, it's too early to tell. I am aware that medical miracles happen all the time, and all I have to do is stick around until they find one for me. I also realize that even if and when another drug begins to work, the tumor may just be "hiding" again until it senses the right moment to expose itself.
These are facts. I'm not trying to be morbid, I'm just being honest. That being said, I will NEVER accept not beating this thing. Not ever. I will fight until the bitter end. I dream of holding all of this tumor in a jar and burning it; watching it sizzle, listening to it hiss as it disintegrates.
I have things to keep fighting for, too. The band is doing great; we just started doing shows again. I need to see how far we can go. Our material is better than it's ever been.
I want it all
Some kind of wonderful
Make me right when I fall
Put my feet on the ground
So far between, so far apart
What I didn't know
I should have seen
Right from the start
That's the chorus of "Better." I want it all. I want to have everything there is to have in this life. There is no reason that someone else should have it and I shouldn't. I refuse to accept that. Laci reminds me that I can still have all of that. I can still have a life, a wife, a career, a family, a future. That gives me the strength to keep going every single day, even if it is just one day at a time.
I feel like I'm starting a new chapter. Like I said before, I don't know the end of my story anymore, and I suppose that's how it's meant to be. I'm in a new place, going for new treatment, looking for a turnaround, (hopefully) picking up on a blossoming music career...it's exciting, yet incredibly scary at the same time. There's just so much uncertainty, as there's always been.
I used to be scared on stage, but not anymore. Why would I be scared of holding a mic and singing in front of people? I have much bigger things to fear, and I'm not scared of those things.
I try to live without fear. "The most important thing is never to be scared at all." That's a line from a popular Israeli song. It's not a perfect translation, but you get the idea.
The truth is, I do get scared. Sometimes I let it all sink in, and I'm overwhelmed. As the days go by, it doesn't get any easier to believe that this is all happening to me. Then I regroup and somehow continue to put one foot in front of the other. One step at a time. One day at a time. It's the only way I know how.
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