Today, as if completely logical, I picked up the phone, dialed Mike’s cell phone number, and left him a long voicemail. I asked him if he was feeling better, gave him a quick update on things, and told him how much I missed him. When I hung up the phone, I felt lifted.
It has been one month since Mike joined the angels. Yet, I continue to look for him everywhere and talk to him daily. No, I am not in denial, and as far as I can tell, my sanity is still intact. For the past nine years, in some form or another, my life has been for Mike, about Mike, and with Mike. That he is no longer physically here does not mean that I don’t feel him around me. Mike is here; he never really left. I sense his presence in every room. He shines through every memory, every joke, every conversation, and every thought. I feel him each and every second. From this, I derive immeasurable comfort.
While I can easily go on and on about how much I miss Mike, how I am coping, and what I have done to fill my time over the last month, this blog isn’t about me. It never was. I created this blog to share our story, not mine. So instead of rambling about myself, I will share another example of Mike’s amazing spirit: A few days ago, I found (not that it was really ever lost, but forgotten in the chaos of our life) a special notebook that Mike had made for my birthday this past April. In it, Mike wrote: “because of you Lizzy, this year has been the best year of my life. Even with everything going on, I would not change my life for anything.” I sat there and read and reread the words he wrote in disbelief. Only Mike could be so positive. Only Mike would call a year filled with cancer (in his brain, no less), surgeries, chemo, brain radiation, hospital visits, medications, and pain the “best” year of his life. Only Mike would find true happiness where most people would only find despair. Only Mike would be so kind and so loving to give me that much credit. Only Mike.
May I one day be half as hopeful, half as positive and half as strong as Mike always was. May I one day learn to focus on the joys of life, on the good. May I one day look at life with half the optimism Mike always did. Really, may we all.
Monday, December 10, 2007
Sunday, November 18, 2007
My Inspiration
Today, with Mike’s picture in my pocket close to my heart and the words “Just 4 U Mike” on the back of my shirt, I finished the Philadelphia Half Marathon (my first one ever). I ran for Mike. I ran for me. And I ran for countless other young Melanoma angels I know who are no longer here to run themselves.There was a sense of irony running this race with Mike as my inspiration—he always used to say “running is dumb; real athletes play football or basketball!” During the race, I could hear his voice teasing me for running so far in the freezing cold. Nevertheless, I cannot imagine a bigger inspiration. While I had not really trained enough over the last couple of months (for obvious reasons), and I was running with excruciating knee pain (I popped an Advil every single mile, after mile 4), giving up, stopping, or not finishing under two hours as I was determined to do, was never an option. Mike would be so disappointed otherwise. The concepts of giving up, or doing something half-assed were completely foreign to Mike; I want to live just like Mike did. So I kept running, and at most mile markers, I pointed to the sky (a la James Thrash after each catch) and said: “that was for you, babe.” And, as wacky as this sounds, I swear, Mike gave me some signs that he was watching me run through the city today. Thanks for the “smiley face” at mile 9, Mike.
For the first time since Mike’s departure, today, I also ran past a lot of Philadelphia landmarks or spots where Mike and I had made memories for almost 9 years. The emotions were overwhelming. The sight of the South Street Diner set off a major crying fit mid-race. Yes, my husband was obsessed with the Hungry Man Special there! But for some crazy reason, there was also a sense of comfort in seeing some of those spots. My heart ached that we will no longer be at those places together, yet I was (and am) grateful that we had so many fun times and awesome memories for me to cling onto.
As I now lay in bed, in major knee pain, I am starting to wonder if Mike was right after all. Maybe running long distances is dumb. But dumb or not, Mike got me through today; he was, and will always be, my amazing source of inspiration!
Monday, November 12, 2007
Empty and Guilty
Today, I woke up with a knot in my stomach. That same knot that has been there for at least the last week. The knot that represents the emptiness and guilt that I feel. Empty for having lost a part of me, for having lost my soul mate. Empty because I feel alone, even though I am surrounded by friends and family around the clock. Empty because I feel like I no longer have a purpose.
And then there is guilt. Guilt for being able to do things that Mike is no longer here to do. Guilt for waking up. Guilt for being able to walk, run, eat and talk. Guilt for laughing. Guilt for breathing. Guilt for being alive. But most of all, guilt for not having been able to save Mike. For months, I watched the disease ravage him, and yet, there was nothing that I could do to stop it. I know I did as much as I humanly could, but at the end, I failed Mike. I failed to save him.
Over the last several days, people have repeatedly told me that time heals all wounds. My wounds are deep. I will need a lot of time to heal. But I wonder, will time also fill this emptiness? Will time erase my guilt? Will this knot ever go away?
Mike’s memorial service was on Saturday. It was absolutely perfect. Perfect just like him. About 500 people gathered to celebrate Mike’s life—-a true testament to Mike. To honor Mike’s wishes, I delivered the eulogy. It was atop the list of one of the hardest things I have ever done. As I stood there, gazing at the large crowd, hands shaking, and unable to breathe, I feared one thing most: that I would not do Mike justice with my words. It is hard to capture the essence of Mike. It is hard to describe him using words. So, I did my best. I just hope it was what he expected.
At the request of some family and friends, here is the eulogy I delivered:
Months ago, when Mike gave me the honor to speak at his memorial service, I had no idea how difficult it would be to stand here and talk about a man who was in every sense extraordinary. A man whose brief existence on earth touched countless lives and inspired us all.
I can’t sum Mike up. It is impossible. So instead, I will stand here and thank him. Thank him for the way he impacted each of our lives. Thank him for teaching us all how to live life to the fullest. Thank him for his passion, his loyalty, honesty, generosity, selflessness. Thank him for the endless laughter he brought into our worlds daily. And most of all, thank him for just being Mike.
Every person who was fortunate enough to meet Mike, couldn’t help but fall in love with him. Mike was infectious. He made everyone around him feel good about themselves, even if he was busy making fun or teasing them, which we all know was something he did best.
Making people laugh was Mike’s number one goal in life. His trademark. Even during the last few months while he was sick, he would try so hard to muster up the energy to make an inappropriate funny comment or make everyone laugh. Mike’s solution to each of life’s problems was a joke or prank. And he loved bragging about his pranks over and over and over again. As I look around this church, I see so many people who are lucky enough to have gotten their nicknames from Mike. Agan. Smashford. Beefcake. Dumpy. And best of all, my nickname, Nags.
Mike took pride in being the funniest one of all of our crazy friends. And he insisted that we all remember him for one thing—being funny. Well, I promise you Mikey, your sense of humor will never be forgotten.
Mike was also the most passionate person most of us have ever known. Passionate about anything and everything that mattered, and even passionate about things that most people wouldn’t think twice about. Mike was passionate about me. Passionate about his family. His friends. His work. Passionate about the Philadelphia Eagles, even though they never gave him that Super Bowl win he desperately wanted to see. Passionate about his hatred of Charlie Manuel. So many nights I sat next to Mike and watched him curse the Phillies and swear that he would never watch another Phils game, just to come home the next night and see him watching and cursing the Phils yet again.
Most importantly, though, Mike was passionate about life. Mike’s zest for life shined through everything that he did. He managed to pack three lifetimes into his short one. He lived each moment for that moment, and each day for that day. He always said that he wanted to live his life in a way that if he left the world early, there would be no regrets. Well, Mikey, mission accomplished.
I can’t really describe in words Mike’s strength, optimism and courage. Anyone who watched Mike fight this battle against Melanoma, knows exactly what I mean. Mike never gave up. Never. Not even at the end. He never felt sorry for himself. And he always said how lucky he was. Lucky to be loved by so many wonderful friends and family. He fought with grace, dignity, and most of all with laughter. Mikey, we are so proud of you for the way you fought this battle. Your enemy was not fair, but you never wavered. And at the end, you did not lose. You won. You will always be our hero.
As I stand here today, I am incredibly jealous. Jealous of heaven for having taken those gorgeous blue eyes. Jealous of all the angels who are no doubt partying with Mike and getting new nicknames right now.
Mike, you left your footprints on all of our hearts. You are not gone. You will always be here in our thoughts, in our hearts and in our memories. It was truly a privilege to have loved you and to have been loved by you. Now, go. Go make all the angels laugh. Till we meet again, safe travels, my love.
Michael J. Filippone
(July 24, 1973 - November 7, 2007)
For Mike's Obituary, go to www.philly.com and type Filippone.
And then there is guilt. Guilt for being able to do things that Mike is no longer here to do. Guilt for waking up. Guilt for being able to walk, run, eat and talk. Guilt for laughing. Guilt for breathing. Guilt for being alive. But most of all, guilt for not having been able to save Mike. For months, I watched the disease ravage him, and yet, there was nothing that I could do to stop it. I know I did as much as I humanly could, but at the end, I failed Mike. I failed to save him.
Over the last several days, people have repeatedly told me that time heals all wounds. My wounds are deep. I will need a lot of time to heal. But I wonder, will time also fill this emptiness? Will time erase my guilt? Will this knot ever go away?
Mike’s memorial service was on Saturday. It was absolutely perfect. Perfect just like him. About 500 people gathered to celebrate Mike’s life—-a true testament to Mike. To honor Mike’s wishes, I delivered the eulogy. It was atop the list of one of the hardest things I have ever done. As I stood there, gazing at the large crowd, hands shaking, and unable to breathe, I feared one thing most: that I would not do Mike justice with my words. It is hard to capture the essence of Mike. It is hard to describe him using words. So, I did my best. I just hope it was what he expected.
At the request of some family and friends, here is the eulogy I delivered:
Months ago, when Mike gave me the honor to speak at his memorial service, I had no idea how difficult it would be to stand here and talk about a man who was in every sense extraordinary. A man whose brief existence on earth touched countless lives and inspired us all.
I can’t sum Mike up. It is impossible. So instead, I will stand here and thank him. Thank him for the way he impacted each of our lives. Thank him for teaching us all how to live life to the fullest. Thank him for his passion, his loyalty, honesty, generosity, selflessness. Thank him for the endless laughter he brought into our worlds daily. And most of all, thank him for just being Mike.
Every person who was fortunate enough to meet Mike, couldn’t help but fall in love with him. Mike was infectious. He made everyone around him feel good about themselves, even if he was busy making fun or teasing them, which we all know was something he did best.
Making people laugh was Mike’s number one goal in life. His trademark. Even during the last few months while he was sick, he would try so hard to muster up the energy to make an inappropriate funny comment or make everyone laugh. Mike’s solution to each of life’s problems was a joke or prank. And he loved bragging about his pranks over and over and over again. As I look around this church, I see so many people who are lucky enough to have gotten their nicknames from Mike. Agan. Smashford. Beefcake. Dumpy. And best of all, my nickname, Nags.
Mike took pride in being the funniest one of all of our crazy friends. And he insisted that we all remember him for one thing—being funny. Well, I promise you Mikey, your sense of humor will never be forgotten.
Mike was also the most passionate person most of us have ever known. Passionate about anything and everything that mattered, and even passionate about things that most people wouldn’t think twice about. Mike was passionate about me. Passionate about his family. His friends. His work. Passionate about the Philadelphia Eagles, even though they never gave him that Super Bowl win he desperately wanted to see. Passionate about his hatred of Charlie Manuel. So many nights I sat next to Mike and watched him curse the Phillies and swear that he would never watch another Phils game, just to come home the next night and see him watching and cursing the Phils yet again.
Most importantly, though, Mike was passionate about life. Mike’s zest for life shined through everything that he did. He managed to pack three lifetimes into his short one. He lived each moment for that moment, and each day for that day. He always said that he wanted to live his life in a way that if he left the world early, there would be no regrets. Well, Mikey, mission accomplished.
I can’t really describe in words Mike’s strength, optimism and courage. Anyone who watched Mike fight this battle against Melanoma, knows exactly what I mean. Mike never gave up. Never. Not even at the end. He never felt sorry for himself. And he always said how lucky he was. Lucky to be loved by so many wonderful friends and family. He fought with grace, dignity, and most of all with laughter. Mikey, we are so proud of you for the way you fought this battle. Your enemy was not fair, but you never wavered. And at the end, you did not lose. You won. You will always be our hero.
As I stand here today, I am incredibly jealous. Jealous of heaven for having taken those gorgeous blue eyes. Jealous of all the angels who are no doubt partying with Mike and getting new nicknames right now.
Mike, you left your footprints on all of our hearts. You are not gone. You will always be here in our thoughts, in our hearts and in our memories. It was truly a privilege to have loved you and to have been loved by you. Now, go. Go make all the angels laugh. Till we meet again, safe travels, my love.
Michael J. Filippone
(July 24, 1973 - November 7, 2007)
For Mike's Obituary, go to www.philly.com and type Filippone.
Wednesday, November 7, 2007
Angel
Mike is finally free. Free from the needles, free from the scans, free from treatments and medications, free from pain and free from the horrendous Melanoma.
At 2:15 p.m., with one hand in my hand, and the other in his mother’s, Mike’ soul left this earth and soared the skies. He is now my very own angel.
I feel empty. I feel numb. And worst of all, I feel like it’s not real. I cannot believe that I will not hear his voice again. I cannot believe that I will not feel his touch again. I cannot believe he will not wink at me, smile at me, or kiss me again. Mike’s departure, while expected, feels so sudden and surreal. I now ache for one more hour, one more minute, even just one more second with him.
This morning, although he could not really speak in words, he told me he loved me, and kissed my forehead one last time. And I told him that I love him over and over and over. I just wish I could tell him one more time.
Mike, you have left a gaping hole in my heart. It was an honor to love you, to marry you and to walk this path with you. I miss you, and will forever love you. You will always live in my heart and mind. Safe journey, my love.
We will celebrate Mike’s life on Saturday, November 10, 2007 at Holy Trinity Evangelical Lutheran Church, 927 S. Providence Rd., Wallingford, PA 19086. Visitation will be from 2-3 pm. Memorial Service from 3-4 pm. All are invited.
In lieu of flowers contributions in Mike’s memory may be made to the Trustees of the University of Pennsylvania, specifically noting a gift to support Dr. Keith Flaherty’s Melanoma research; 34th and Spruce Streets, 12 Penn Tower, Room 1222, Philadelphia, PA 19104.
At 2:15 p.m., with one hand in my hand, and the other in his mother’s, Mike’ soul left this earth and soared the skies. He is now my very own angel.
I feel empty. I feel numb. And worst of all, I feel like it’s not real. I cannot believe that I will not hear his voice again. I cannot believe that I will not feel his touch again. I cannot believe he will not wink at me, smile at me, or kiss me again. Mike’s departure, while expected, feels so sudden and surreal. I now ache for one more hour, one more minute, even just one more second with him.
This morning, although he could not really speak in words, he told me he loved me, and kissed my forehead one last time. And I told him that I love him over and over and over. I just wish I could tell him one more time.
Mike, you have left a gaping hole in my heart. It was an honor to love you, to marry you and to walk this path with you. I miss you, and will forever love you. You will always live in my heart and mind. Safe journey, my love.
We will celebrate Mike’s life on Saturday, November 10, 2007 at Holy Trinity Evangelical Lutheran Church, 927 S. Providence Rd., Wallingford, PA 19086. Visitation will be from 2-3 pm. Memorial Service from 3-4 pm. All are invited.
In lieu of flowers contributions in Mike’s memory may be made to the Trustees of the University of Pennsylvania, specifically noting a gift to support Dr. Keith Flaherty’s Melanoma research; 34th and Spruce Streets, 12 Penn Tower, Room 1222, Philadelphia, PA 19104.
Thursday, November 1, 2007
Torn
It has been nine months since the horrendous disease invaded Mike’s brain. Because of the way the disease attached itself to Mike’s brain lining (believe it or not, that’s way worse than having tumors on the brain itself, which Mike also has), Mike’s prognosis was six to eight weeks. Six to eight weeks. Yet, nine months later, Mike is still here. No, the fact that Mike is still here is by no means a miracle. It is by no stretch of imagination a sign of treatments having worked. And it certainly does not mean that Mike is beating this disease or is going to get better; he is not. Mike is here today only and only because he has been fighting tooth and nail to hang on. For three years, Mike waged a heroic battle against the cancer. For the last painful couple of months, he has waged a war against death. And even tonight, as I look at his frail body, watch him wince in pain with each slight movement, and listen to him yell nonsense about climbing a tree with dollar bills and a car on his back, I still see no signs of surrender. That will to fight, refusal to give-up, and urge to live encapsulates Mike.
The last nine months have been long, incredibly difficult, emotionally and physically draining, and downright excruciating. For Mike, for me, and for both our families. As I sit in bed next to Mike tonight watching him sleep, I feel at a crossroads with my emotions. The selfish part of me wants Mike here, for just one more day, one more week, one more month. Just a bit longer so I can lay next to him and hear him breathe, hold his hand while we sleep, kiss my favorite part of his forehead, or hear him call my name (just so he can ask for something and decide he doesn’t want it by the time I bring it). He is not ready to go, and I am not ready to let him go. Yet the rational part of me knows better. He is suffering. He is not himself. He is alive but not living.
I want his pain to end. I want him to be free. And so I feel torn. Torn about what I should want, or what to hope and pray for (not that God is listening anyway). Torn about whether I should tell Mike it is ok for him to stop fighting, or beg him to hang on just a little longer. This internal struggle eats at me daily. I wish there were some easy answers, or a manual to deal with this crap.
Meanwhile, Mike’s mental state has deteriorated even more over the last week or so. He is very feisty (a la “angry drunk Mike”) and says the craziest things. He has developed a passion for using expletives, and most of what he says does not make sense at all were it not for the curse words attached to it. If anyone knows anything about the following let me know: “monkey and Tony in white wagon,” “Mr. W. going down to Mississippi,” “dollar bills for kid with backpack,” and “broken guy swimming in shark tank.” Despite his utter confusion and incoherence most of the time, Mike still manages to make me laugh daily. Making people laugh was always Mike’s specialty, his trademark. He is still good at it. He is still funny and charming, even in this state. Unfortunately, the funny things he says are all x-rated, and I don’t want to make anyone turn red, so I will refrain from sharing.
Thank you all for your support, friendship, and love. If I don’t email back or call, it is not because I don’t appreciate your thoughts or phone calls; I do. It is just that I am overwhelmed and tired. And plus, we all know that I also have a lazy side. To those of you who have been feeding our families, visiting to make us laugh, and just listening to me cry non-stop, know that I am eternally grateful. I love you all!
Please continue praying and sending Mike positive thoughts.
P.S. Over the last few months, I have realized that I am an awful blogger. It takes me weeks to do an update, and compared to other bloggers I know, I just suck! There are days when I get the urge to write, but then get busy with Mike, work, visitors, and everything else that goes on, and end up not having even with one free minute to write one sentence. And then there are days that even a gun to my head will not produce a meaningful entry. I will try to be better, but I have also resigned myself to the fact that I just can’t be good at everything!
The last nine months have been long, incredibly difficult, emotionally and physically draining, and downright excruciating. For Mike, for me, and for both our families. As I sit in bed next to Mike tonight watching him sleep, I feel at a crossroads with my emotions. The selfish part of me wants Mike here, for just one more day, one more week, one more month. Just a bit longer so I can lay next to him and hear him breathe, hold his hand while we sleep, kiss my favorite part of his forehead, or hear him call my name (just so he can ask for something and decide he doesn’t want it by the time I bring it). He is not ready to go, and I am not ready to let him go. Yet the rational part of me knows better. He is suffering. He is not himself. He is alive but not living.
I want his pain to end. I want him to be free. And so I feel torn. Torn about what I should want, or what to hope and pray for (not that God is listening anyway). Torn about whether I should tell Mike it is ok for him to stop fighting, or beg him to hang on just a little longer. This internal struggle eats at me daily. I wish there were some easy answers, or a manual to deal with this crap.
Meanwhile, Mike’s mental state has deteriorated even more over the last week or so. He is very feisty (a la “angry drunk Mike”) and says the craziest things. He has developed a passion for using expletives, and most of what he says does not make sense at all were it not for the curse words attached to it. If anyone knows anything about the following let me know: “monkey and Tony in white wagon,” “Mr. W. going down to Mississippi,” “dollar bills for kid with backpack,” and “broken guy swimming in shark tank.” Despite his utter confusion and incoherence most of the time, Mike still manages to make me laugh daily. Making people laugh was always Mike’s specialty, his trademark. He is still good at it. He is still funny and charming, even in this state. Unfortunately, the funny things he says are all x-rated, and I don’t want to make anyone turn red, so I will refrain from sharing.
Thank you all for your support, friendship, and love. If I don’t email back or call, it is not because I don’t appreciate your thoughts or phone calls; I do. It is just that I am overwhelmed and tired. And plus, we all know that I also have a lazy side. To those of you who have been feeding our families, visiting to make us laugh, and just listening to me cry non-stop, know that I am eternally grateful. I love you all!
Please continue praying and sending Mike positive thoughts.
P.S. Over the last few months, I have realized that I am an awful blogger. It takes me weeks to do an update, and compared to other bloggers I know, I just suck! There are days when I get the urge to write, but then get busy with Mike, work, visitors, and everything else that goes on, and end up not having even with one free minute to write one sentence. And then there are days that even a gun to my head will not produce a meaningful entry. I will try to be better, but I have also resigned myself to the fact that I just can’t be good at everything!
Thursday, October 11, 2007
Fading
Amazed. Moved. Humbled. There are at least another dozen adjectives to describe how I felt after reading all of your overwhelming and heartfelt comments, but I will stick to these three. I had no idea so many people read this blog, follow our story, or care about us. I feel so blessed to have so much support from near and far. To our friends who I know follow the blog but were too lazy to post a comment, please be advised that I am withholding your engagement, wedding and/or baby shower gifts as appropriate punishment!
Every day over the last two weeks, I sat in bed with Mike and read him each and every comment posted that day. I will fess up that I summarized some of the longer posts because Mike’s attention span is about 36 seconds these days. Your posts encouraged him, put a smile on his face, and some even made him burst with much-needed laughter. Thank you!
I wish I was ending this post here. I contemplated doing just that, but some of you hang on for updates, and I owe you that. We have been in the hospital since Saturday. I am not exactly sure what prompted me to bring Mike to the ER, but I guess it was a combination of a few things. There is a lot wrong with Mike, and none of it seems fixable. Even the simplest problems are without an explanation or a fix. Mike is barely hanging on. He sleeps about 21 hours a day. He is weak and has no energy to even talk for more than five minutes at a time. I am not sure Mike really appreciates or understands what is going on, but then again, maybe he does know but will not verbalize. Knowing Mike, he is trying to protect the rest of us from the pain of talking about the unthinkable.
Mike’s body and mind are tortured and battered from the disease, the treatments, and the long battle in general. The once vibrant, energetic, strong, muscular, funny, talkative, charming and charismatic Mike is now just a quiet, frail body that lays in a hospital bed with his eyes closed all day. He does have brief moments of clarity and energy when he talks for a few minutes, and for those short-lived moments, Mike is back to his old self — making jokes, poking fun at friends, or being incredibly gentle and sweet. I spend 24 hours a day sitting in the hospital so that I do not miss one of these precious moments.
We expect that we will go home within the next couple of days. I will admit that I am petrified about bringing Mike back home. Taking care of Mike is SO much harder than I ever imagined. But just as we have done every step of the way, we will find a way to manage. We are still planning to start Mike on a chemo pill (waiting for the f’in — yes, f’in — insurance company to clear the exorbitantly costly drug) to see if it helps. I continue to keep fingers crossed, but am being realistic at the same time.
I am sorry if this post is a downer. It has just been one of those days. Hell, it has been one of those months. Know that I have not lost all hope. I still believe in miracles, and I still do hope. But with each passing day, and each time I look at my poor sweet Mike, my hope fades a bit more. I promise, however, to hang on to the remaining glimmers.
Every day over the last two weeks, I sat in bed with Mike and read him each and every comment posted that day. I will fess up that I summarized some of the longer posts because Mike’s attention span is about 36 seconds these days. Your posts encouraged him, put a smile on his face, and some even made him burst with much-needed laughter. Thank you!
I wish I was ending this post here. I contemplated doing just that, but some of you hang on for updates, and I owe you that. We have been in the hospital since Saturday. I am not exactly sure what prompted me to bring Mike to the ER, but I guess it was a combination of a few things. There is a lot wrong with Mike, and none of it seems fixable. Even the simplest problems are without an explanation or a fix. Mike is barely hanging on. He sleeps about 21 hours a day. He is weak and has no energy to even talk for more than five minutes at a time. I am not sure Mike really appreciates or understands what is going on, but then again, maybe he does know but will not verbalize. Knowing Mike, he is trying to protect the rest of us from the pain of talking about the unthinkable.
Mike’s body and mind are tortured and battered from the disease, the treatments, and the long battle in general. The once vibrant, energetic, strong, muscular, funny, talkative, charming and charismatic Mike is now just a quiet, frail body that lays in a hospital bed with his eyes closed all day. He does have brief moments of clarity and energy when he talks for a few minutes, and for those short-lived moments, Mike is back to his old self — making jokes, poking fun at friends, or being incredibly gentle and sweet. I spend 24 hours a day sitting in the hospital so that I do not miss one of these precious moments.
We expect that we will go home within the next couple of days. I will admit that I am petrified about bringing Mike back home. Taking care of Mike is SO much harder than I ever imagined. But just as we have done every step of the way, we will find a way to manage. We are still planning to start Mike on a chemo pill (waiting for the f’in — yes, f’in — insurance company to clear the exorbitantly costly drug) to see if it helps. I continue to keep fingers crossed, but am being realistic at the same time.
I am sorry if this post is a downer. It has just been one of those days. Hell, it has been one of those months. Know that I have not lost all hope. I still believe in miracles, and I still do hope. But with each passing day, and each time I look at my poor sweet Mike, my hope fades a bit more. I promise, however, to hang on to the remaining glimmers.
Friday, September 28, 2007
Counting On You
Let me start off by coming clean. The concept of this post is someone else’s idea. I have been following another young couple’s Melanoma Blog and I got this idea from them. Since imitation is the best form of flattery, I hope they don’t mind that I am an idea thief.
There are lots of you out there that read this blog and email me directly. The rest of you post once in a while, and some of you have no idea how to post a comment because you are just very very bad at navigating the internet (you know who you are). But I am asking that all of you try.
Because he has stopped reading it (he can’t see well enough to read the screen), Mike seems to think that no one else is reading the blog either. I want to show him otherwise. Plus, I would love to see who is following our story. So get started and post some positive thoughts, encouraging words, funny stories, jabs at Mike’s football picks, jokes (dirty or clean, we love both kinds) or anything else your heart desires. I will then print all the comments and read them to Mike. He will be so happy to know that so many people, even people he doesn’t know or hasn’t seen in years, are cheering him on. I am hoping for lots and lots of comments!
If you are waiting for me to update you on Mike—well, I don’t really have an update. Mike is basically the same. He is really weak, cannot walk or get out of bed, sleeps a lot, seems confused at times but lucid most of the time, and is generally in poor shape. But he is convinced that he will get through this, and he is determined to fight. In fact, we are hoping to get him started on a very very low dose chemo pill (he will take the pills at home) to see if we can see some improvement. Keeping fingers crossed.
We continue to be surrounded and supported by our amazing families and friends. Thank you. We love you all!
OK, now start typing. I am counting on you.
There are lots of you out there that read this blog and email me directly. The rest of you post once in a while, and some of you have no idea how to post a comment because you are just very very bad at navigating the internet (you know who you are). But I am asking that all of you try.
Because he has stopped reading it (he can’t see well enough to read the screen), Mike seems to think that no one else is reading the blog either. I want to show him otherwise. Plus, I would love to see who is following our story. So get started and post some positive thoughts, encouraging words, funny stories, jabs at Mike’s football picks, jokes (dirty or clean, we love both kinds) or anything else your heart desires. I will then print all the comments and read them to Mike. He will be so happy to know that so many people, even people he doesn’t know or hasn’t seen in years, are cheering him on. I am hoping for lots and lots of comments!
If you are waiting for me to update you on Mike—well, I don’t really have an update. Mike is basically the same. He is really weak, cannot walk or get out of bed, sleeps a lot, seems confused at times but lucid most of the time, and is generally in poor shape. But he is convinced that he will get through this, and he is determined to fight. In fact, we are hoping to get him started on a very very low dose chemo pill (he will take the pills at home) to see if we can see some improvement. Keeping fingers crossed.
We continue to be surrounded and supported by our amazing families and friends. Thank you. We love you all!
OK, now start typing. I am counting on you.
Thursday, September 13, 2007
It's Football Season
Philadelphia Eagles fans are rare creatures. The start of the Eagles season is akin to a national holiday in Philadelphia, and the weekly anticipation for each Sunday’s game is higher than Christmas and your birthday combined. The games are more important than family (unless the family is huddled around the TV together), friends (unless the friends are there to high five and cheer each time the Eagles make a play), and even God (unless prayers for a miraculous win are needed). This past Sunday, I realized that even though he is really sick, Mike does indeed still bleed Eagles green.
Sunday morning, I woke up to Mike’s loud voice: “Lizzy, Lizzy, get up, the Eagles are on in 15 minutes.” I could barely open my eyes; I was tired. Really tired. With one eye open, I looked at the clock. It was 6 am! I told Mike to go back to sleep, and did my best to explain that it was only 6 am and the game would not be on for another 7 hours. Some time went by, and again Mike started yelling: “Lizzy, get up. The Game is on.” I looked at the clock; this time, it was 7:15 am. We repeated this routine every hour until noon when I turned on Fox NFL Sunday for Mike to watch. Within 5 minutes, he fell sound asleep!
Given his recent state of confusion and overall mental disarray, it really was amazing that Mike (a) remembered that it was a Sunday; (b) knew that football season was starting; (c) recalled that the Eagles were playing Green Bay; and (d) was actually excited to watch the game. Mike had not shown any excitement for any activity for a few months, and it was just nice to hear the sheer anticipation in his voice.
Throughout the day, many friends stopped by and “watched” parts of the game with Mike. Mike also slept, or pretended like he was sleeping so we would all stop screaming in his ear, for big chunks of the game. But when the Eagles lost, he was alert and mad. And at the end of the night, just as any true Eagles fan, he complained about the coach, the offense, the special teams, the quarterback, and everything else in between. Never mind that he actually didn't see half of the things he was complaining about. That's how we do it in Philly anyway!
It is now Wed. and Mike is already talking about the upcoming Monday night game. He is also talking non-stop about his fantasy football teams (warning: he assures me that he will win this week). Needless to say, Mike seems to be more alert and oriented, thanks to football season. He is still not good, but very slightly better. Also, on a bright non football-related note, Mike has started eating again, which is a cause for celebration in and of itself (please knock on wood the instant you read this). We have no idea what the days, weeks, and (hopefully) months ahead will bring. But for now, we are hanging in, hanging on, and busy watching football!
Sunday morning, I woke up to Mike’s loud voice: “Lizzy, Lizzy, get up, the Eagles are on in 15 minutes.” I could barely open my eyes; I was tired. Really tired. With one eye open, I looked at the clock. It was 6 am! I told Mike to go back to sleep, and did my best to explain that it was only 6 am and the game would not be on for another 7 hours. Some time went by, and again Mike started yelling: “Lizzy, get up. The Game is on.” I looked at the clock; this time, it was 7:15 am. We repeated this routine every hour until noon when I turned on Fox NFL Sunday for Mike to watch. Within 5 minutes, he fell sound asleep!
Given his recent state of confusion and overall mental disarray, it really was amazing that Mike (a) remembered that it was a Sunday; (b) knew that football season was starting; (c) recalled that the Eagles were playing Green Bay; and (d) was actually excited to watch the game. Mike had not shown any excitement for any activity for a few months, and it was just nice to hear the sheer anticipation in his voice.
Throughout the day, many friends stopped by and “watched” parts of the game with Mike. Mike also slept, or pretended like he was sleeping so we would all stop screaming in his ear, for big chunks of the game. But when the Eagles lost, he was alert and mad. And at the end of the night, just as any true Eagles fan, he complained about the coach, the offense, the special teams, the quarterback, and everything else in between. Never mind that he actually didn't see half of the things he was complaining about. That's how we do it in Philly anyway!
It is now Wed. and Mike is already talking about the upcoming Monday night game. He is also talking non-stop about his fantasy football teams (warning: he assures me that he will win this week). Needless to say, Mike seems to be more alert and oriented, thanks to football season. He is still not good, but very slightly better. Also, on a bright non football-related note, Mike has started eating again, which is a cause for celebration in and of itself (please knock on wood the instant you read this). We have no idea what the days, weeks, and (hopefully) months ahead will bring. But for now, we are hanging in, hanging on, and busy watching football!
Friday, August 31, 2007
Update
We are still in the hospital. Mike is in some pain, but his pain has been a lot better managed since we have been here. He had a spinal tap on Wednesday to remove some of the spinal fluid and relieve the pressure in the brain and spine. Since the spinal tap, Mike has been a bit more coherent and has not had any major hallucinations. Mike’s blood pressure has been off the charts (no real explanation), his heart is not pumping hard enough (no real explanation), and he is really tired and sleeps a lot. He is not eating or drinking (luckily, we have IV fluids) and looks frail. He has good moments and days, and bad ones like today. Despite all of this, however, Mike still manages to be funny, witty, sweet, charming, selfless and caring when awake. He is truly amazing, inspirational and graceful.
While I would give both arms and one leg to find something that would help Mike, there are no further treatments that could be beneficial at this point. Mike's disease seems to have progressed, though it is not really apparent on the scans. We will go home in a few days, and hope to make Mike as comfortable and pain-free as possible. We will still cling to threads of hope; I have been told that miracles do happen!
The outpouring of love and support from family, friends and perfect strangers has been tremendous. So many of you have been at the hospital with me around the clock, and it means more than you will ever know. We are truly blessed to have so many incredible people in our life. We are grateful for everything all of you have done for us. And, most of all, we are humbled by your love. Words cannot express our gratitude. Know that we love you all.
While I would give both arms and one leg to find something that would help Mike, there are no further treatments that could be beneficial at this point. Mike's disease seems to have progressed, though it is not really apparent on the scans. We will go home in a few days, and hope to make Mike as comfortable and pain-free as possible. We will still cling to threads of hope; I have been told that miracles do happen!
The outpouring of love and support from family, friends and perfect strangers has been tremendous. So many of you have been at the hospital with me around the clock, and it means more than you will ever know. We are truly blessed to have so many incredible people in our life. We are grateful for everything all of you have done for us. And, most of all, we are humbled by your love. Words cannot express our gratitude. Know that we love you all.
Monday, August 27, 2007
Slipping
After a more or less decent morning yesterday with all of our friends participating in the annual Pone Invitational Fantasy Football draft, Mike took a dramatic turn for the worst. Early last night, I brought Mike to the ER at Penn and he was immediately admitted.
Mike is completely incoherent, hallucinating, in extreme pain, and overall in awful shape. He is undergoing a battery of tests, and we will have to see what the tests show. He does have brief moments of lucidity, but all in all, things do not look good. To be quite frank about it, he seems to be slipping away.
I am petrified. I need strength. Please pray for a Mike's peace and comfort.
Mike is completely incoherent, hallucinating, in extreme pain, and overall in awful shape. He is undergoing a battery of tests, and we will have to see what the tests show. He does have brief moments of lucidity, but all in all, things do not look good. To be quite frank about it, he seems to be slipping away.
I am petrified. I need strength. Please pray for a Mike's peace and comfort.
Monday, August 20, 2007
Thirsty!
This Friday night, we made our first, and I hope our last, trip to the emergency room. Mike has been unable to eat or drink for a while now, and on Friday, he looked like a wilted plant that desperately needed water. By the time we got to the ER, Mike could not even stand and needed a wheelchair. A truly sad sight.
The sort of treatment you get in the ER when you utter the words cancer and brain in the same sentence is amazing. While there were people (really sick looking people) waiting for hours to be seen, we got right in and within half an hour, the IV fluids were flowing. After two bags, Mike started feeling a lot better, and even made some smart jokes about my driving on the way home.
Mike is still not well, but slightly better than he was last week. Today, he ate a couple pieces of watermelon, which is a huge feat. We are hoping to move to something a little more substantial over the next few days. Any of you who make good soup or cake (for me), please stop by!
I know you already do, but please send more prayers and positive thoughts our way. This by far has been the toughest thing imaginable, and we really need strength.
The sort of treatment you get in the ER when you utter the words cancer and brain in the same sentence is amazing. While there were people (really sick looking people) waiting for hours to be seen, we got right in and within half an hour, the IV fluids were flowing. After two bags, Mike started feeling a lot better, and even made some smart jokes about my driving on the way home.
Mike is still not well, but slightly better than he was last week. Today, he ate a couple pieces of watermelon, which is a huge feat. We are hoping to move to something a little more substantial over the next few days. Any of you who make good soup or cake (for me), please stop by!
I know you already do, but please send more prayers and positive thoughts our way. This by far has been the toughest thing imaginable, and we really need strength.
Wednesday, August 1, 2007
Decent News With A Kink
The results are decent. The brain MRI shows no new brain tumors, and the spots on the brain lining are stable. With the exception of one small questionable area, the spine is also stable. All in all, there is no progression, which is as good as we could expect at this point.
This should be such happy news, except there is a kink. Mike feels terrible, and no one knows exactly why. It could be from steroid withdrawal (Mike stopped his steroids), or it could be from damage to some of his cranial nerves (nerves at the base of his skull). If the problem is nerves-related, we will need to look at further treatment options. It is hard to pinpoint, so we have been told. At any rate, Mike cannot eat or drink, and has lost a ton of weight. He is always in pain, nauseous and downright suffering. He looks awful, and feels even worse. It is truly unbearable for him to endure. It is equally unbearable for me to watch.
I just cannot believe this is happening. Mike is no longer the same vibrant, lively, fun and active man he was. This damned disease has knocked him to his knees. Yet, there is nothing I can do but watch. I feel so helpless; I am so angry at the unfairness of it all; and I am overwhelmed by deep sadness. I am doing my best to stay positive and hopeful, but I am having a really tough time. I know Mike feels the same.
We need a miracle, but I’ll save that plea for another day. Right now, I will settle for something (anything) that would just alleviate some of Mike’s symptoms. Thoughts, suggestions, homeopathic remedies, miracle drugs, and even reliable witchcraft are welcome.
Seriously, please keep the prayers and positive thoughts coming. We need and appreciate them.
This should be such happy news, except there is a kink. Mike feels terrible, and no one knows exactly why. It could be from steroid withdrawal (Mike stopped his steroids), or it could be from damage to some of his cranial nerves (nerves at the base of his skull). If the problem is nerves-related, we will need to look at further treatment options. It is hard to pinpoint, so we have been told. At any rate, Mike cannot eat or drink, and has lost a ton of weight. He is always in pain, nauseous and downright suffering. He looks awful, and feels even worse. It is truly unbearable for him to endure. It is equally unbearable for me to watch.
I just cannot believe this is happening. Mike is no longer the same vibrant, lively, fun and active man he was. This damned disease has knocked him to his knees. Yet, there is nothing I can do but watch. I feel so helpless; I am so angry at the unfairness of it all; and I am overwhelmed by deep sadness. I am doing my best to stay positive and hopeful, but I am having a really tough time. I know Mike feels the same.
We need a miracle, but I’ll save that plea for another day. Right now, I will settle for something (anything) that would just alleviate some of Mike’s symptoms. Thoughts, suggestions, homeopathic remedies, miracle drugs, and even reliable witchcraft are welcome.
Seriously, please keep the prayers and positive thoughts coming. We need and appreciate them.
Tuesday, July 24, 2007
Status Quo
Mike is not any better. He is not any worse, but we were really hoping to see some improvement by now. Things are status quo, sort of. We have had some brief moments when Mike has felt really good. We have also had a ton of time when he has felt absolutely awful. But for now, status quo is better than a decline, and we will take it.
Mike is having a brain and spine MRI this Thursday, and I am posting to shamelessly solicit your prayers and positive thoughts. We need them all. I will post as soon as we get the results.
P.S. Today is Mike’s birthday. He is now 34! Here is to hoping for a better year of life. Happy Birthday, My Love.
Mike is having a brain and spine MRI this Thursday, and I am posting to shamelessly solicit your prayers and positive thoughts. We need them all. I will post as soon as we get the results.
P.S. Today is Mike’s birthday. He is now 34! Here is to hoping for a better year of life. Happy Birthday, My Love.
Wednesday, June 13, 2007
Happy Tears
I finally get to start on a happy note. We got great news today!
Mike had a cat scan of his body (not brain) on Monday, and we met with our favorite doctor to get the results today. I am usually a wreck before we get scan results, and Mike is usually calm. Today, there was a complete role reversal. Mike was nervous, sweating, and I really thought he was on the verge of passing out in the waiting room.
After fifteen agonizing minutes of waiting, Dr. Flaherty came over and handed me the written report, and told me to read it. He has never done that before. I said “you tell me” and he replied “it’s good.” I wanted to jump up and kiss the good doctor!
Basically, all the major organs are clear. The suspicious spots on the lungs that showed up on the last scans are gone. There are no new tumors anywhere. And here is the kicker: all the existing cancerous/enlarged lymph nodes deep in the abdomen and chest are shrinking on their own! It appears that Mike’s body is having a spontaneous immune response and is fighting the Melanoma on its own. We could not have hoped for anything better than this. We are thrilled. No, absolutely ecstatic. In fact, we cried for a whole hour after the appointment. But for the first time in almost a year, they were happy tears.
Mike and I always say that Melanoma is like a football game. One minute your team is down by a touchdown, the next minute your defense gets an interception and you are back in the game. Even underdogs win big games. We can too. This fight is far from over, but for now, Mike and I will celebrate just being back in the game!
Please know that your love, support, encouragement and prayers mean the world. Finally, I cannot end this post without thanking my mom and sister for all that they have done over the last few months. From showing up at my house unsolicited a bunch of times each week with cooked food, groceries, and even presents like clothes and shoes, to comforting me countless nights, they have done it all. I am so lucky to have such selfless role models.
Mike had a cat scan of his body (not brain) on Monday, and we met with our favorite doctor to get the results today. I am usually a wreck before we get scan results, and Mike is usually calm. Today, there was a complete role reversal. Mike was nervous, sweating, and I really thought he was on the verge of passing out in the waiting room.
After fifteen agonizing minutes of waiting, Dr. Flaherty came over and handed me the written report, and told me to read it. He has never done that before. I said “you tell me” and he replied “it’s good.” I wanted to jump up and kiss the good doctor!
Basically, all the major organs are clear. The suspicious spots on the lungs that showed up on the last scans are gone. There are no new tumors anywhere. And here is the kicker: all the existing cancerous/enlarged lymph nodes deep in the abdomen and chest are shrinking on their own! It appears that Mike’s body is having a spontaneous immune response and is fighting the Melanoma on its own. We could not have hoped for anything better than this. We are thrilled. No, absolutely ecstatic. In fact, we cried for a whole hour after the appointment. But for the first time in almost a year, they were happy tears.
Mike and I always say that Melanoma is like a football game. One minute your team is down by a touchdown, the next minute your defense gets an interception and you are back in the game. Even underdogs win big games. We can too. This fight is far from over, but for now, Mike and I will celebrate just being back in the game!
Please know that your love, support, encouragement and prayers mean the world. Finally, I cannot end this post without thanking my mom and sister for all that they have done over the last few months. From showing up at my house unsolicited a bunch of times each week with cooked food, groceries, and even presents like clothes and shoes, to comforting me countless nights, they have done it all. I am so lucky to have such selfless role models.
Wednesday, May 30, 2007
Missing Normal
Here is the cold truth. Not sugar-coated. Not downplayed like I normally do. Not wrapped in optimism. Mike feels awful. Absolutely awful. This is the worst he has felt since this ordeal started. He feels worse than he did during chemo or after his surgeries. He is just not himself, even though he tries really hard to be. He is also tired. Tired of always feeling sick. Tired of having to lay around all the time. Tired of being betrayed by his own body. Tired of not knowing what the future holds. Tired of all the drugs, all the tests and all the procedures. Quite frankly, so am I.
Mike was actually starting to feel a lot better over the last two weeks, but then came along the Gamma Knife procedure. Gamma Knife is usually a somewhat painless procedure that does not have many side effects. For most patients, that is. For Mike, it has been a whole different story.
The procedure itself was not that bad. They started off by screwing—yes, literally screwing—a metal frame into Mike’s skull. Believe me, it looked as painful as it sounds. When I walked in and saw the screws drilled into Mike’s head, I nearly passed out. Thanks to the Gamma Knife nurse, we have a lovely picture to memorialize the event. In the interest of sharing, Mike gave me permission to post the picture here.
After he got the metal frame drilled into his head, Mike underwent an MRI, which has twice the resolution of normal MRI machines. The MRI identified two lesions on the brain. One we knew about, and one we didn’t. Both lesions were treated with Gamma Knife. The whole process lasted about five hours, and since we got to the hospital before 6 a.m., we were home and Mike was sleep by 11:30.
The day after Gamma Knife, Mike’s pain started. Headaches accompanied by bouts of nausea, weakness and confusion. Mike could not eat or drink, which no doubt exacerbated the whole situation. Since we were not told that this sort of pain was possible, and my best friend, the internet, did not have any answers, we were in a state of panic. Lucky for us, it was the holiday weekend, and getting hold of a doctor was as impossible as the Phillies winning the World Series under Charlie Manuel. So Mike spent the weekend in bed, and I spent the weekend hysterical.
Thankfully, without me even asking, my mom and aunt dropped their weekend travel plans and came over a bunch of times to keep me company, bring groceries and cook lots of food and clean since I had no energy for such activities, and most of all, give me much needed hugs and love. I would have been dead without them (Thank You!)
On Tuesday, we finally got to talk to the doctors and learned that a small percentage of patients do actually experience a lot of pain after Gamma Knife. Would have been nice if they told us this sooner! Plus, apparently, the delayed side effects of the brain radiation are now kicking in too, which is making matters worse. Anyway, the docs increased Mike’s steroids, and he is starting to feel better.
I don’t want to complain or rant about how hard this is. It is obvious. I doubt that I even have the words to accurately express how it feels. It has all really sunk in--our life is forever changed. It will never be the same. Never. I miss the days when life was effortless. When we could do anything and everything we wanted on a whim. When Mike felt good for more than ten minutes at a time. When we laughed all the time. When life was normal. Those days now seem so out of reach. We long for those days. We dream, pray and wish for those days. And almost every night, for just a brief moment, we let ourselves get lost in the slim possibility that those days will be back. That life will once again be normal.
Sunday, May 6, 2007
Ray of Sunshine
For what seems like an eternity, we have had a dark cloud over our heads with no light in sight. Last week, however, a ray of sunshine finally peeked through.
We waited four anxiety-filled days and sleepless nights to get the results of Mike’s brain and spine MRI. And I am happy to report that all in all, the results are pretty good. Of course, you have to put "good" in context of what we are up against. The spine is stable. There are no new tumors/lesions on Mike’s brain, and all the ones on his brain lining are shrinking! They are not gone, but we are not greedy, and we will take "shrinking" any day. Only one tumor, which is the largest one of the bunch and is on the brain itself, decided to be stubborn and slightly grew. So we are going after the little bastard--HARD!
Within the next two weeks, Mike will have a procedure called Gamma Knife RadioSurgery. For the avid readers of this blog—all three of you—you might remember that we were really hoping for Gamma Knife when Mike was first diagnosed with brain tumors/lesions. But at that time, we were told Mike was not a candidate. Well now it seems that he is able to have Gamma Knife to the one large tumor.
Here is your medical lecture for the week: Gamma Knife, which ironically does not involve a knife or even an incision, is a machine that delivers powerful mega doses of radiation to a specific target in the brain. Think of it as shooting a gun at a target. It is powerful, precise, and our best shot at getting rid of this bastard tumor. Gamma Knife is about 90 percent effective. Since Mike and I are big gamblers and calculate everything in terms of winning odds, we figure that Gamma Knife has double the odds of winning a blackjack hand. So we are absolutely betting the house on this one!
In a life measured in short intervals marked by Cat Scans and MRIs, and filled with doctors’ appointments, lots of medications, IVs, and different treatments in between, each piece of good news, no matter how small, is a huge victory. Although we are waiting and hoping for a really sunny day, for now, we will bask in the ray of sunshine that we have been given.
Thank you to everyone who called, emailed, and above all, prayed for us. Words cannot express our appreciation. We are so lucky to have your love.
We waited four anxiety-filled days and sleepless nights to get the results of Mike’s brain and spine MRI. And I am happy to report that all in all, the results are pretty good. Of course, you have to put "good" in context of what we are up against. The spine is stable. There are no new tumors/lesions on Mike’s brain, and all the ones on his brain lining are shrinking! They are not gone, but we are not greedy, and we will take "shrinking" any day. Only one tumor, which is the largest one of the bunch and is on the brain itself, decided to be stubborn and slightly grew. So we are going after the little bastard--HARD!
Within the next two weeks, Mike will have a procedure called Gamma Knife RadioSurgery. For the avid readers of this blog—all three of you—you might remember that we were really hoping for Gamma Knife when Mike was first diagnosed with brain tumors/lesions. But at that time, we were told Mike was not a candidate. Well now it seems that he is able to have Gamma Knife to the one large tumor.
Here is your medical lecture for the week: Gamma Knife, which ironically does not involve a knife or even an incision, is a machine that delivers powerful mega doses of radiation to a specific target in the brain. Think of it as shooting a gun at a target. It is powerful, precise, and our best shot at getting rid of this bastard tumor. Gamma Knife is about 90 percent effective. Since Mike and I are big gamblers and calculate everything in terms of winning odds, we figure that Gamma Knife has double the odds of winning a blackjack hand. So we are absolutely betting the house on this one!
In a life measured in short intervals marked by Cat Scans and MRIs, and filled with doctors’ appointments, lots of medications, IVs, and different treatments in between, each piece of good news, no matter how small, is a huge victory. Although we are waiting and hoping for a really sunny day, for now, we will bask in the ray of sunshine that we have been given.
Thank you to everyone who called, emailed, and above all, prayed for us. Words cannot express our appreciation. We are so lucky to have your love.
Sunday, April 22, 2007
Looking For Stable
I have no real excuse for not having posted an update sooner. The truth is that lately I just like to hide from it all, and cannot bring myself to sit down and write. I must have tried to post something at least four or five times in the last ten days, but each time I began to write, I felt stressed, unmotivated and overwhelmed. I am sorry if I kept anyone hanging; I hope to be over the hump.
Mike finished 15 sessions of brain radiation and 14 sessions of spine radiation a little over two weeks ago. The treatments were more or less tolerable, and except for a few really awful days, Mike did fairly well. True to form, and much to the amazement of our doctors, Mike insisted on going to work every day during treatment, and has continued to go to work since. I feel confident that Mike has broken some sort of record on consecutive work days while on brain radiation. I intend to get his record registered!
As we expected, Mike’s appetite soared on the mega doses of steroids that he was given to help with the radiation-induced brain swelling. When his appetite was at its peak, Mike was eating about six or seven full meals a day, plus a plethora of “snacks” in between. When he was not actually eating, he was thinking or dreaming about food. One night, Mike woke me up at 3 a.m. just to tell me that he was craving a bucket of KFC fried chicken! Just as any good wife would do, I rolled away and told him to go back to sleep.
To support Mike, I joined in each time he ate a meal. From 7 p.m. until midnight, Mike and I held a nightly marathon eating festival at our house. It is amazing how good grilled cheese tastes right before bed. Thanks to Mike’s insatiable appetite and my sheer inability to control myself around food, instead of Mike, I was the one who gained about 10 pounds. Thankfully, Mike has reduced his doses of steroids, and his appetite is now somewhat controllable. The nightly food feasts have come to an end, and I have started a new diet!
In addition to non-stop eating, we also had some comic relief from some of the side-effects of brain radiation. Confusion and memory loss are scary, but certainly make for some funny stories. One day, Mike spent nearly five minutes searching for his cell phone. He looked all over the house, his bag and in his pockets, but the cell phone was nowhere to be found. Angry and agitated that he may have lost his cell phone, Mike started to walk out the door to check the car. Just then, he realized that he was actually talking on the “lost” cell phone!
The side effects of brain radiation tend to get worse in the months following treatment, and Mike is certainly a lot more lethargic, confused, and dizzy now than he was two weeks ago. He is also experiencing constant headaches, which we are really hoping go away soon. It is impossible for me to imagine what it must be like to have a headache every waking moment of every day, and manage to be pleasant, funny and cheerful at the same time; yet, Mike does it with such ease that sometimes I just forget that he is actually sick.
The next course of attack is up in the air at the moment. We have met with multiple doctors and decided that Mike’s next treatment for the tumors in the abdomen and chest, as well as other Melanoma cells in the body, should be a drug called Interleukin-2 (IL-2). IL-2 is by far one of the most difficult cancer treatments out there. It is a form of immunotherapy, which makes chemo seem like a cakewalk! IL-2 is administered in-patient in the ICU for five days at a time, followed by a short break, and then five more days. I will not waste time with details about IL-2 until we know if Mike is definitely a candidate.
Because IL-2 can inflame and aggravate the tumors on the brain/brain lining, the doctors will only consider administering IL-2 if Mike’s brain is stable, meaning there are no new tumors and the old ones have not grown. So, Mike will have a brain MRI at the beginning of May. He will also have full-body scans. As scary as IL-2 sounds, we are really hoping that Mike is a candidate. We don’t have many viable options left, so we are holding our breath. All we need is “STABLE.” Keep your fingers crossed, throw pennies in the fountains, and kindly make your birthday wishes for us!
Mike finished 15 sessions of brain radiation and 14 sessions of spine radiation a little over two weeks ago. The treatments were more or less tolerable, and except for a few really awful days, Mike did fairly well. True to form, and much to the amazement of our doctors, Mike insisted on going to work every day during treatment, and has continued to go to work since. I feel confident that Mike has broken some sort of record on consecutive work days while on brain radiation. I intend to get his record registered!
As we expected, Mike’s appetite soared on the mega doses of steroids that he was given to help with the radiation-induced brain swelling. When his appetite was at its peak, Mike was eating about six or seven full meals a day, plus a plethora of “snacks” in between. When he was not actually eating, he was thinking or dreaming about food. One night, Mike woke me up at 3 a.m. just to tell me that he was craving a bucket of KFC fried chicken! Just as any good wife would do, I rolled away and told him to go back to sleep.
To support Mike, I joined in each time he ate a meal. From 7 p.m. until midnight, Mike and I held a nightly marathon eating festival at our house. It is amazing how good grilled cheese tastes right before bed. Thanks to Mike’s insatiable appetite and my sheer inability to control myself around food, instead of Mike, I was the one who gained about 10 pounds. Thankfully, Mike has reduced his doses of steroids, and his appetite is now somewhat controllable. The nightly food feasts have come to an end, and I have started a new diet!
In addition to non-stop eating, we also had some comic relief from some of the side-effects of brain radiation. Confusion and memory loss are scary, but certainly make for some funny stories. One day, Mike spent nearly five minutes searching for his cell phone. He looked all over the house, his bag and in his pockets, but the cell phone was nowhere to be found. Angry and agitated that he may have lost his cell phone, Mike started to walk out the door to check the car. Just then, he realized that he was actually talking on the “lost” cell phone!
The side effects of brain radiation tend to get worse in the months following treatment, and Mike is certainly a lot more lethargic, confused, and dizzy now than he was two weeks ago. He is also experiencing constant headaches, which we are really hoping go away soon. It is impossible for me to imagine what it must be like to have a headache every waking moment of every day, and manage to be pleasant, funny and cheerful at the same time; yet, Mike does it with such ease that sometimes I just forget that he is actually sick.
The next course of attack is up in the air at the moment. We have met with multiple doctors and decided that Mike’s next treatment for the tumors in the abdomen and chest, as well as other Melanoma cells in the body, should be a drug called Interleukin-2 (IL-2). IL-2 is by far one of the most difficult cancer treatments out there. It is a form of immunotherapy, which makes chemo seem like a cakewalk! IL-2 is administered in-patient in the ICU for five days at a time, followed by a short break, and then five more days. I will not waste time with details about IL-2 until we know if Mike is definitely a candidate.
Because IL-2 can inflame and aggravate the tumors on the brain/brain lining, the doctors will only consider administering IL-2 if Mike’s brain is stable, meaning there are no new tumors and the old ones have not grown. So, Mike will have a brain MRI at the beginning of May. He will also have full-body scans. As scary as IL-2 sounds, we are really hoping that Mike is a candidate. We don’t have many viable options left, so we are holding our breath. All we need is “STABLE.” Keep your fingers crossed, throw pennies in the fountains, and kindly make your birthday wishes for us!
Thursday, March 15, 2007
The Good, the Bad and the Ugly
We got the Ugly two weeks ago. This week, it was the Bad. Mike had an MRI of his spine to make sure the disease had not spread there. The happy news is that there are no tumors or lesions on Mike’s spine. The not-so-happy news is that the nerve at the base of Mike’s spine is somewhat thickened, which indicates that there are Melanoma cells floating in the area, and coating the nerve. So in addition to getting Whole Brain Radiation (Mike has now finished 5 of the 15 daily treatments), Mike will also be getting radiation to his lower spine. He will receive 14 treatments. Just like the Whole Brain Radiation, this treatment will also be every day for the next three weeks. The side effects will be nausea, fatigue and lower back discomfort, of course.
The comforting part of this whole ordeal is that they discovered the spinal nerve thickening early enough that a tumor had not formed, and hopefully, the radiation will prevent a tumor from ever forming in that area. Our radiation oncologist told us that this radiation is “preventative” and he would rather do it now when it is “elective” than wait until it becomes an “emergency.” He actually used all of those words. Not the best news to get, but not the worst either.
We got the Ugly and the Bad; Good must be on her way. We will be waiting.
The comforting part of this whole ordeal is that they discovered the spinal nerve thickening early enough that a tumor had not formed, and hopefully, the radiation will prevent a tumor from ever forming in that area. Our radiation oncologist told us that this radiation is “preventative” and he would rather do it now when it is “elective” than wait until it becomes an “emergency.” He actually used all of those words. Not the best news to get, but not the worst either.
We got the Ugly and the Bad; Good must be on her way. We will be waiting.
Thursday, March 8, 2007
Blind Date
You know that feeling before a blind date? That feeling of uncertainty, anxiety and fear--what if the person is ugly, boring, not fun, annoying, or obnoxious? And at the same time, the optimism and hope--imagining that it will work out, hoping the person is the right match, and knowing that going on this date is a good idea. Well, not to sound flip, but that's exactly how today felt. Mike and I had a blind date with Whole Brain Radiation.
The uncertainty of what lies ahead is one of the most crippling feelings, and one that cancer patients have to wrestle with daily. Needless to say, we were anxious, nervous and scared today. Endless questions going through our minds: what will it feel like? Will it make Mike sick? Will it work? Will the side effects be awful? At the same time, we were also positive and optimistic. Hoping that the radiation works. Imagining it will work. God, we need it to work.
We got to Penn around 12:45, a whole 15 minutes early. The hallway that leads to Penn’s radiation department is long and narrow, with a mural painted on both sides. I guess the hospital folks thought that a hallway donned in blue paint with white clouds would be comforting to patients as they walk to their flesh BBQ session. It is anything but comforting.
A few minutes after we got there, we met with Dr. Lustig, the radiation oncologist. He first examined Mike's rash, which is now covering Mike's entire body, itches like hell, and looks like purple leather. Dr. Lustig was also at a loss about the rash, and could not offer much more than the same steroids we were given yesterday. I guess it will be up to my internet-acquired medical degree to solve the rash mystery.
After the two-minute chat with Dr. Lustig, a technician came to take Mike to the radiation room for his first treatment. Mike was sweating, and looked nervous. Even though he will never admit it, I knew he was scared. I was too. His radiation technician was a very good looking woman, which I am sure gave Mike some comfort. Before he walked to the treatment room, Mike stopped and gave me a quick kiss, and I was able to utter “be tough.” Mike and I had made a deal that during each radiation session, when his eyes are closed, Mike will just picture Melanoma getting killed and leaving his body--our own wacky guided imagery of sorts. So as he walked away from me, I thought with the loudest quiet voice: “F’ You Melanoma. Get out of our lives.” I then hoped that Mike was thinking the very same.
Back in the packed waiting room, and eleven year-old patient waited for her treatment. She looked really sick. Looking at her made me feel like my chest had been lit on fire. It all seems too unfair.
The first treatment finished with no incident. Mike could not really explain what happened in the treatment room. What I have learned is that Mike's face/head is jammed into a tight mesh mask and strapped to the table, his eyes are closed, and he cannot move. The radiation treatment then starts, targets the entire brain, and lasts about and about 15 mins. That's all I know, and that's more than enough info for me on this particular subject.
Considering he had just finished his first brain radiation session, Mike seemed calm. On the car ride home, I sneezed, and Mike quickly told me not to wipe it on his new car seats. Oh good, his sense of humor is still in tact.
Later in the day, we gave Mike a new hair cut. For the second time in one year, we shaved Mike’s head because of cancer treatment. This really sucks. But life goes on, and so shall we. Even if it means with a bald head!
The uncertainty of what lies ahead is one of the most crippling feelings, and one that cancer patients have to wrestle with daily. Needless to say, we were anxious, nervous and scared today. Endless questions going through our minds: what will it feel like? Will it make Mike sick? Will it work? Will the side effects be awful? At the same time, we were also positive and optimistic. Hoping that the radiation works. Imagining it will work. God, we need it to work.
We got to Penn around 12:45, a whole 15 minutes early. The hallway that leads to Penn’s radiation department is long and narrow, with a mural painted on both sides. I guess the hospital folks thought that a hallway donned in blue paint with white clouds would be comforting to patients as they walk to their flesh BBQ session. It is anything but comforting.
A few minutes after we got there, we met with Dr. Lustig, the radiation oncologist. He first examined Mike's rash, which is now covering Mike's entire body, itches like hell, and looks like purple leather. Dr. Lustig was also at a loss about the rash, and could not offer much more than the same steroids we were given yesterday. I guess it will be up to my internet-acquired medical degree to solve the rash mystery.
After the two-minute chat with Dr. Lustig, a technician came to take Mike to the radiation room for his first treatment. Mike was sweating, and looked nervous. Even though he will never admit it, I knew he was scared. I was too. His radiation technician was a very good looking woman, which I am sure gave Mike some comfort. Before he walked to the treatment room, Mike stopped and gave me a quick kiss, and I was able to utter “be tough.” Mike and I had made a deal that during each radiation session, when his eyes are closed, Mike will just picture Melanoma getting killed and leaving his body--our own wacky guided imagery of sorts. So as he walked away from me, I thought with the loudest quiet voice: “F’ You Melanoma. Get out of our lives.” I then hoped that Mike was thinking the very same.
Back in the packed waiting room, and eleven year-old patient waited for her treatment. She looked really sick. Looking at her made me feel like my chest had been lit on fire. It all seems too unfair.
The first treatment finished with no incident. Mike could not really explain what happened in the treatment room. What I have learned is that Mike's face/head is jammed into a tight mesh mask and strapped to the table, his eyes are closed, and he cannot move. The radiation treatment then starts, targets the entire brain, and lasts about and about 15 mins. That's all I know, and that's more than enough info for me on this particular subject.
Considering he had just finished his first brain radiation session, Mike seemed calm. On the car ride home, I sneezed, and Mike quickly told me not to wipe it on his new car seats. Oh good, his sense of humor is still in tact.
Later in the day, we gave Mike a new hair cut. For the second time in one year, we shaved Mike’s head because of cancer treatment. This really sucks. But life goes on, and so shall we. Even if it means with a bald head!
Wednesday, March 7, 2007
Pity Party
Today, I threw a big party. A pity party, that is. First, for Mike and all that he endlessly has to endure. Then, and I am ashamed to admit this, for myself. To my own defense, Mike's party was bigger and lasted all day.
The medication that Mike started taking in preparation for his brain radiation (a heavy steroid called Decadron) has given him a full-body rash. At least that's the Liz and Mike medical diagnosis. He is so incredibly uncomfortable that last night, he spent half the night in the bathtub with his new girlfriend, Aveeno Oatmeal Powder. But even Aveeno wasn't really helping. Since there was nothing I could do to help, I lay in bed half the night angry that this is what my poor Mike has to go through. I woke up with a pounding headache. Apparently, so did Mike.
We headed to Penn in the morning so that Mike could get measured for his radiation mask. The process took a while because they took a whole bunch of x-rays. At the end of the appointment, we met with a young doctor who examined Mike's rash. He could not offer an explanation, though he was pretty sure that the rash could not have been caused by any of the meds that Mike has started taking. To be cautious, he switched Mike to a different drug (another heavy duty steroid), but he had no idea when and how the rash could go away.
I paged Mike's oncologist in the afternoon, and he could not offer an explanation for the rash either. Since tomorrow is the first radiation session, we will check with the doctors again tomorrow.
Later in the evening, the rash started getting worse. Another sleepless night on deck. The pity party continues . . .
The medication that Mike started taking in preparation for his brain radiation (a heavy steroid called Decadron) has given him a full-body rash. At least that's the Liz and Mike medical diagnosis. He is so incredibly uncomfortable that last night, he spent half the night in the bathtub with his new girlfriend, Aveeno Oatmeal Powder. But even Aveeno wasn't really helping. Since there was nothing I could do to help, I lay in bed half the night angry that this is what my poor Mike has to go through. I woke up with a pounding headache. Apparently, so did Mike.
We headed to Penn in the morning so that Mike could get measured for his radiation mask. The process took a while because they took a whole bunch of x-rays. At the end of the appointment, we met with a young doctor who examined Mike's rash. He could not offer an explanation, though he was pretty sure that the rash could not have been caused by any of the meds that Mike has started taking. To be cautious, he switched Mike to a different drug (another heavy duty steroid), but he had no idea when and how the rash could go away.
I paged Mike's oncologist in the afternoon, and he could not offer an explanation for the rash either. Since tomorrow is the first radiation session, we will check with the doctors again tomorrow.
Later in the evening, the rash started getting worse. Another sleepless night on deck. The pity party continues . . .
Saturday, March 3, 2007
Roller Coaster
This week was a long roller coaster with lots of twists, lots of turns and lots of nauseating moments.
On Tuesday, we met with Mike's oncologist, Dr. Flaherty, to discuss the news and our options. Dr. Flaherty went over the scan results, and though we already knew most of what he said, he went over everything again. True to form, I asked a ton of questions. Here are the basics: the brain MRI shows 4 to 5 lesions on the brain lining. Most of the lesions are very small with the exception of one slightly larger spot. Aside from the spots on the brain lining, the scans also show a few enlarged/diseased lymph nodes deep in the abdomen and chest.
The big concern right now is to treat the spots on the brain. Dr. Flaherty will be setting us up with a radiation oncologist at Penn to discuss possibility of brain radiation. There are two possibilities: (1) RadioSurgery/Gamma Knife, which is very high dose radiation to a targeted area. It is less invasive and it is just one day of treatment. To put it in basic terms, they zap the tumors with the radiation; or (2) Whole Brain Radiation, which is radiation to the whole head. It is a lot more difficult to tolerate and has many more side effects. The treatments will be over a few weeks.
We have no idea if Mike would be a candidate for Gamma Knife, but if he is, we are pretty sure that's the way we would want to go. Gotta keep our fingers crossed!
Using my great begging skills, I managed to get us an appointment with a famous neurosurgeon at NYU on Wednesday. We had four hours to get ready, get Penn to put Mike's scans on a CD on very short notice, which was another Herculean begging project, and get to NY. But we did it. We met with Dr. Kelly at NYU early in the afternoon. Unfortunately, the CDs that we got from Penn were of poor quality, and Dr. Kelly could not really offer us meaningful advice. Based on Dr. Kelly's review of the written reports, he did tell us that he did not think Mike would be a candidate for RadioSurgery/Gamma Knife. Another big blow. We had our hearts set on that. Dr. Kelly did tell us that Penn's radiation oncology and neurosurgery departments are top-notch, and we should feel comfortable staying there.
While the appointment at NYU did not go completely as we had hoped, the trip was not a complete waste. We walked around Fifth Ave. for a bit, bought some fun bath products, ate dinner, and used the train ride home for much needed naps!
Turns out that Dr. Kelly was right. On Friday, we met with the radiation oncologist, Dr. Lustig, at Penn. Mike is definitely not a candidate for RadioSurgery/Gamma Knife because the spots on Mike's brain lining are too small, and the disease is diffuse. So it just makes no sense to radiate a small part of the brain; instead, Mike will undergo Whole Brain Radiation (daily radiation to the whole head). The treatment will be 15 sessions, five days a week. The side effects are fatigue, possible loss of short-term memory (which actually should return with time), confusion and, of course, hair loss. Despite what I expected, Dr. Lustig was actually somewhat optimistic that the radiation could help shrink or stabilize the lesions.
Mike was also started on a high-dose steroid called Decadron to help with the radiation-induced swelling, and also reduce the headaches that Mike has been having. Decadron is a very strong steroid, which will make Mike very hungry, grumpy and wired. Dr. Lustig joked that we might need to lock the fridge!
Later that evening, Mike and I were sitting on our stairs talking. Mike looked at me and said: "Lizzy, I want you to know that I do not lose fights. I have never lost a fight, and I am not ready to lose this one. I am not scared of this radiation. I am ready. I know it will work for me. I know it in my heart. We will kick Melanoma's ass." Throughout our battle with this cancer, I have always admired Mike's unequivocal courage, unshakable strength, unbending optimism and incredible positive attitude. On this particular Friday night, I worshiped him for it.
On Tuesday, we met with Mike's oncologist, Dr. Flaherty, to discuss the news and our options. Dr. Flaherty went over the scan results, and though we already knew most of what he said, he went over everything again. True to form, I asked a ton of questions. Here are the basics: the brain MRI shows 4 to 5 lesions on the brain lining. Most of the lesions are very small with the exception of one slightly larger spot. Aside from the spots on the brain lining, the scans also show a few enlarged/diseased lymph nodes deep in the abdomen and chest.
The big concern right now is to treat the spots on the brain. Dr. Flaherty will be setting us up with a radiation oncologist at Penn to discuss possibility of brain radiation. There are two possibilities: (1) RadioSurgery/Gamma Knife, which is very high dose radiation to a targeted area. It is less invasive and it is just one day of treatment. To put it in basic terms, they zap the tumors with the radiation; or (2) Whole Brain Radiation, which is radiation to the whole head. It is a lot more difficult to tolerate and has many more side effects. The treatments will be over a few weeks.
We have no idea if Mike would be a candidate for Gamma Knife, but if he is, we are pretty sure that's the way we would want to go. Gotta keep our fingers crossed!
Using my great begging skills, I managed to get us an appointment with a famous neurosurgeon at NYU on Wednesday. We had four hours to get ready, get Penn to put Mike's scans on a CD on very short notice, which was another Herculean begging project, and get to NY. But we did it. We met with Dr. Kelly at NYU early in the afternoon. Unfortunately, the CDs that we got from Penn were of poor quality, and Dr. Kelly could not really offer us meaningful advice. Based on Dr. Kelly's review of the written reports, he did tell us that he did not think Mike would be a candidate for RadioSurgery/Gamma Knife. Another big blow. We had our hearts set on that. Dr. Kelly did tell us that Penn's radiation oncology and neurosurgery departments are top-notch, and we should feel comfortable staying there.
While the appointment at NYU did not go completely as we had hoped, the trip was not a complete waste. We walked around Fifth Ave. for a bit, bought some fun bath products, ate dinner, and used the train ride home for much needed naps!
Turns out that Dr. Kelly was right. On Friday, we met with the radiation oncologist, Dr. Lustig, at Penn. Mike is definitely not a candidate for RadioSurgery/Gamma Knife because the spots on Mike's brain lining are too small, and the disease is diffuse. So it just makes no sense to radiate a small part of the brain; instead, Mike will undergo Whole Brain Radiation (daily radiation to the whole head). The treatment will be 15 sessions, five days a week. The side effects are fatigue, possible loss of short-term memory (which actually should return with time), confusion and, of course, hair loss. Despite what I expected, Dr. Lustig was actually somewhat optimistic that the radiation could help shrink or stabilize the lesions.
Mike was also started on a high-dose steroid called Decadron to help with the radiation-induced swelling, and also reduce the headaches that Mike has been having. Decadron is a very strong steroid, which will make Mike very hungry, grumpy and wired. Dr. Lustig joked that we might need to lock the fridge!
Later that evening, Mike and I were sitting on our stairs talking. Mike looked at me and said: "Lizzy, I want you to know that I do not lose fights. I have never lost a fight, and I am not ready to lose this one. I am not scared of this radiation. I am ready. I know it will work for me. I know it in my heart. We will kick Melanoma's ass." Throughout our battle with this cancer, I have always admired Mike's unequivocal courage, unshakable strength, unbending optimism and incredible positive attitude. On this particular Friday night, I worshiped him for it.
Monday, February 26, 2007
With Hope
There are no words that can accurately describe how we felt today: devastated, shocked, crushed, demoralized, and downright terrified. Throughout our two and a half year long battle with Melanoma, I have come to expect the unexpected, and face the challenges as they come. We have gone through three surgeries, two different treatments, six tough months of chemo, countless scans and doctors' appointments, months of Mike feeling sick, but nothing could have prepared us for this. Not now. Not ever.
Around 2:00 p.m., Dr. Flaherty called Mike and gave him the news: Mike’s brain MRI shows that the Melanoma has spread to the brain lining. This is by far the worst thing that could have happened. The worst thing. I keep hoping that this is all a big mistake, a big medical error. Yet in my heart, I know . . .
Mike had been having headaches for about three months, but an MRI of his brain in January was more or less clear, and even though Mike had not been feeling completely well for quite a while, cancer to the brain had been ruled out. But it all makes sense now. This explains the dizziness, disequilibrium, headaches, nausea, lack of appetite and all the other symptoms Mike had been having over the last couple of months. This explains why on our recent one-year anniversary trip to the Cayman Islands, Mike did not feel completely like himself. Yet, with all the symptoms, I still cannot believe it. I cannot believe that this hideous disease has invaded Mike’s brain. It all hurts so much. I wish I had been shot in the stomach instead--I am sure it would hurt less.
Mike and I spent the afternoon/night crying. We talked about what would lie ahead, and where we would be headed. We talked about the all the “what ifs” and the future. We talked about our fears and our hopes. We even talked about the unthinkable. We held on to each other and cried for hours, harder than we have ever cried before. We then made a promise to fight with everything we have got. We know this is bad—really bad. But we will not give up. We will not stop fighting. And most of all, we will never give up HOPE. Never.
Around 2:00 p.m., Dr. Flaherty called Mike and gave him the news: Mike’s brain MRI shows that the Melanoma has spread to the brain lining. This is by far the worst thing that could have happened. The worst thing. I keep hoping that this is all a big mistake, a big medical error. Yet in my heart, I know . . .
Mike had been having headaches for about three months, but an MRI of his brain in January was more or less clear, and even though Mike had not been feeling completely well for quite a while, cancer to the brain had been ruled out. But it all makes sense now. This explains the dizziness, disequilibrium, headaches, nausea, lack of appetite and all the other symptoms Mike had been having over the last couple of months. This explains why on our recent one-year anniversary trip to the Cayman Islands, Mike did not feel completely like himself. Yet, with all the symptoms, I still cannot believe it. I cannot believe that this hideous disease has invaded Mike’s brain. It all hurts so much. I wish I had been shot in the stomach instead--I am sure it would hurt less.
Mike and I spent the afternoon/night crying. We talked about what would lie ahead, and where we would be headed. We talked about the all the “what ifs” and the future. We talked about our fears and our hopes. We even talked about the unthinkable. We held on to each other and cried for hours, harder than we have ever cried before. We then made a promise to fight with everything we have got. We know this is bad—really bad. But we will not give up. We will not stop fighting. And most of all, we will never give up HOPE. Never.
Thursday, January 25, 2007
Cruel Joke
It appears that a recurrence around Thanksgiving is becoming a tradition. It is some sort of a cruel joke that life is playing on us. Just when things were once again wonderful and we had settled into a “normal” life, Melanoma reared its un-welcomed head. Why? Why Mike? Why us? It is so hard to control the anger when all you want to do is scream. This one really hurts because Mike just endured six months of Chemo, six months of pain and discomfort for naught.
Mike’s quarterly scans showed Melanoma in his body, and for the second year in a row, Mike had surgery right before Christmas. This time, it was the lymph nodes in his groin/abdomen area. Dr. Spitz did a marvelous job with the surgery, and we learned that 15 malignant tumors were removed this time.
Mike’s recovery was again not easy, but if you look up the words “determined,” “tenacious,” “strong-willed” and “resolute” in the dictionary, I guarantee you will see Mike’s picture. Mike is so strong-willed that on the day of his discharge, he refused to wait for the hospital to wheel him out, and walked out to the car with 20+ stitches and staples in his stomach, and the drain in tow (yep, we got another drain). The nurses chased us down the hall, begging that we wait, but Mike would not have any of it. He wouldn’t even let me pull the car up front.
Mike is now feeling better from the surgery, and we are waiting to get into yet another clinical trial at UCLA. Hey, if we have to travel somewhere for Mike’s treatments, it might as well be LA. The trial is a category of drugs called anti-CTLA-4 drugs, which work to activate the immune system to attack lingering Melanoma cells and prevent recurrences. To get into a clinical trial, there is a lot of red-tape to go through. The wait is unbearable, of course. So we just have to keep our fingers crossed, and hope this happens soon. In the meantime, we will go to the Cayman Islands to celebrate our one year wedding anniversary!
We will not be defined by this damn disease. We will live life. We will enjoy each little thing life has to offer. We will laugh. We will have fun. We will continue to Hope. We will continue to believe.
Mike’s quarterly scans showed Melanoma in his body, and for the second year in a row, Mike had surgery right before Christmas. This time, it was the lymph nodes in his groin/abdomen area. Dr. Spitz did a marvelous job with the surgery, and we learned that 15 malignant tumors were removed this time.
Mike’s recovery was again not easy, but if you look up the words “determined,” “tenacious,” “strong-willed” and “resolute” in the dictionary, I guarantee you will see Mike’s picture. Mike is so strong-willed that on the day of his discharge, he refused to wait for the hospital to wheel him out, and walked out to the car with 20+ stitches and staples in his stomach, and the drain in tow (yep, we got another drain). The nurses chased us down the hall, begging that we wait, but Mike would not have any of it. He wouldn’t even let me pull the car up front.
Mike is now feeling better from the surgery, and we are waiting to get into yet another clinical trial at UCLA. Hey, if we have to travel somewhere for Mike’s treatments, it might as well be LA. The trial is a category of drugs called anti-CTLA-4 drugs, which work to activate the immune system to attack lingering Melanoma cells and prevent recurrences. To get into a clinical trial, there is a lot of red-tape to go through. The wait is unbearable, of course. So we just have to keep our fingers crossed, and hope this happens soon. In the meantime, we will go to the Cayman Islands to celebrate our one year wedding anniversary!
We will not be defined by this damn disease. We will live life. We will enjoy each little thing life has to offer. We will laugh. We will have fun. We will continue to Hope. We will continue to believe.
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