A little after seven this morning, Mark took his last breath. As I’m sitting her looking at his body, I keep expecting his chest to move. Expecting him to take another breath. He looks like he’s sleeping and his body is still warm. It is lightly snowing outside and the scenery beyond his hospice room is still beautiful.
We decided to play music for him this morning, just as we were last night. We thought he wouldn’t want us sitting here in silence. He loved music and he was a very talented musician. I will always remember when he was learning to play Joan Osborne’s “What if God Was One of Us” on his electric guitar. I could hear it all the way from the street when I was getting home from school. I thought it was pretty cool that my step-dad was so good at the electric guitar.
I know it mind sound crazy to say, given the fact that I have been so close to Mark and this situation for the last nine days, but it still doesn’t quite seem real to me. I don’t know if I’ve fully grasped the fact that I will never see him again (in this life, anyway). I will never hear his voice again. I will never hear him call me “Emmy Booskie” again.
I wasn’t here when he took his last breath. I really wanted to be, but I left to get some sleep and didn’t make it back in time. Somehow, I think Mark might have wanted it that way. He spent the entire six years of his disease protecting me, why would he stop now?
Even though I know my words could never even come close to explaining what a wonderful human being Mark was, and how lucky we all were to know him, I find comfort in the fact that I have done my best with this blog. People who never knew Mark feel like they got a glimpse into his life through this blog, and I am extremely proud of that.
I used to read Mark the comments people left him on the blog and I know he read them on his own, too. I don’t think Mark realized what an inspiration he really was until he kept hearing people say it and reading their comments on the blog. He was so focused on the fight and staying alive for my mom and his family, that he never realized the impact he was having on other people along the way. I’m sure that could be said of his entire life. He touched people every day and probably never knew the true impact he had on this world.
Although Mark’s journey on this Earth ends today, I believe, and I know he believes, too, his journey isn’t over. There will be no blog to document the happiness and peace he just found but we can all use our faith and imagination to picture his new life.
Monday, January 24, 2011
Sunday, January 23, 2011
The scary unknown
The room is pretty quiet tonight. Strangely, I find comfort and relaxation in the soothing noise of the bubbling water from his oxygen. We each took turns going into the room alone with Mark. At first, I was too overwhelmed with emotion to say anything. It brought me relief to know that I have already told him all the things I wanted to, and I know that he knows how much I love him.
I felt the same way the summer Mark was first diagnosed; an overwhelming amount of pressure to say all the right things and do all the right things, never knowing when it would be my last conversation or the last time I would see him. I don't do well under those pressure situations. I freeze up and I become speechless. A very strange feeling for someone who talks as much as I do.
When I finally felt like I could talk, I told him again that I love him and that he will soon be in a better place and how happy it makes me that he will finally be free of this awful disease. Pat promised him that he would take good care of me for the rest of our lives and I know that Mark believes that.
While I’m watching him resting comfortably, but breathing heavily, I keep trying to think about what this process might feel like for him. Is it scary to die? Is it scary for someone who has fought so hard to stay alive, to let go of life? I hope he’s not scared and I hope he’s not in pain. I hope he knows that even though we will miss him terribly, we will all be okay. I hope he knows that we will take care of my mom for him. Every so often, we hear him make a sound, like a moan, and it startles us all. It’s strange to hear any sound come from his mouth since he hasn’t been able to talk or make noises since his stroke.
Maybe it’s the planner in me, or maybe it’s my fear of death and the unknown, but every time a nurse comes in to Mark’s room, I ask them about his vitals, about the different things that are going on with his body and what that means in the dying process. I’m not sure what answers I’m hoping to get, but I keep asking anyway. It’s actually kind of embarrassing that I keep asking the same questions over and over again, but I guess I haven’t heard the answer I’m looking for.
I think I’m hoping someone will tell me the exact time Mark is going to die, exactly what his death will look like, what his body will do and maybe I even want someone to tell me how I’m going to feel when he does. The only thing the nurses really can say is that they don’t know. Each person is different.
The dying process is as unique as the person who is dying. That is what I read in the book the hospice gave us that outlines the dying process and the different things the body does during the process. If Mark’s death will be anything like the person he is, he will hold on as long as he possibly can. But we don’t want him to feel like he has to. My mom keeps telling him that it’s okay for him to go and that she will be okay. She is doing her part to make sure that the nurses keep giving him his meds and that she can be his voice, his advocate for keeping him out of pain. I think it brings my mom comfort to be able to take care of him, like he has taken care of her for the last twenty years.
I felt the same way the summer Mark was first diagnosed; an overwhelming amount of pressure to say all the right things and do all the right things, never knowing when it would be my last conversation or the last time I would see him. I don't do well under those pressure situations. I freeze up and I become speechless. A very strange feeling for someone who talks as much as I do.
When I finally felt like I could talk, I told him again that I love him and that he will soon be in a better place and how happy it makes me that he will finally be free of this awful disease. Pat promised him that he would take good care of me for the rest of our lives and I know that Mark believes that.
While I’m watching him resting comfortably, but breathing heavily, I keep trying to think about what this process might feel like for him. Is it scary to die? Is it scary for someone who has fought so hard to stay alive, to let go of life? I hope he’s not scared and I hope he’s not in pain. I hope he knows that even though we will miss him terribly, we will all be okay. I hope he knows that we will take care of my mom for him. Every so often, we hear him make a sound, like a moan, and it startles us all. It’s strange to hear any sound come from his mouth since he hasn’t been able to talk or make noises since his stroke.
Maybe it’s the planner in me, or maybe it’s my fear of death and the unknown, but every time a nurse comes in to Mark’s room, I ask them about his vitals, about the different things that are going on with his body and what that means in the dying process. I’m not sure what answers I’m hoping to get, but I keep asking anyway. It’s actually kind of embarrassing that I keep asking the same questions over and over again, but I guess I haven’t heard the answer I’m looking for.
I think I’m hoping someone will tell me the exact time Mark is going to die, exactly what his death will look like, what his body will do and maybe I even want someone to tell me how I’m going to feel when he does. The only thing the nurses really can say is that they don’t know. Each person is different.
The dying process is as unique as the person who is dying. That is what I read in the book the hospice gave us that outlines the dying process and the different things the body does during the process. If Mark’s death will be anything like the person he is, he will hold on as long as he possibly can. But we don’t want him to feel like he has to. My mom keeps telling him that it’s okay for him to go and that she will be okay. She is doing her part to make sure that the nurses keep giving him his meds and that she can be his voice, his advocate for keeping him out of pain. I think it brings my mom comfort to be able to take care of him, like he has taken care of her for the last twenty years.
Somewhere over the rainbow
On November 1, 2010, I posted the following note and song on Mark's facebook fan page:
When I said "I keep praying that someday Mark will wake up and the cancer clouds will be far behind him," I didn't mean anything about him dying. I wouldn't have even let myself think about that before. But as I just re-read my note, I realize now that my wish for him in November is actually coming true. Mark will very soon be waking up and the cancer clouds will be far behind him. That makes me very happy for him, but very sad for me.
I listened to this song on my way to work and have had it in my head all day long. Not only is it beautiful and my favorite version of Somewhere Over the Rainbow, but it also reminds me of Mark since Eva Cassidy died of Melanoma Skin Cancer at the age of 33. I keep praying that someday Mark will wake up and the cancer clouds will be far behind him!
When I said "I keep praying that someday Mark will wake up and the cancer clouds will be far behind him," I didn't mean anything about him dying. I wouldn't have even let myself think about that before. But as I just re-read my note, I realize now that my wish for him in November is actually coming true. Mark will very soon be waking up and the cancer clouds will be far behind him. That makes me very happy for him, but very sad for me.
Life's not the breaths you take
Mark slept very peacefully last night. Actually, my mom did, too. They both “slept like babies,” she said. Each day, Mark is less and less alert. When I left last night, his eyes were open and I once again told him I loved him before leaving. I truly believe he still knew who I was. Today, he opens his eyes but I don’t think he really sees anything or knows who is there. His breaths are becoming quicker and are followed by a few seconds of apnea. It seems like a lot more work for him to breathe today. Although no one knows for sure, the nurses think he might find peace tonight or tomorrow.
Just as I have explained that living in the body of a stroke victim is Mark’s worst nightmare, sitting, staring and waiting for death is mine. I have feared death since I was ten years old when I lost my brother. I find myself going back and forth between wishing I could be anywhere but here, but yet, I can’t really imagine being anywhere else. I’m afraid to leave for a second in fear of not being here for him as he takes his last breath and being here for my mom. Every time there is a break between his breaths, I feel a wave of panic that this might be it and I just don't know how I'm going to react.
When I started this blog, I never thought about the day when I would write my last entry. But over the last few days, that’s all I’ve been thinking about. What will I say to bring to a close the last six years that Mark has been battling this awful disease? What will I say to fully honor Mark’s life and legacy?
Although it’s not quite time for that yet, I have already thought about some things I do and do not want to say. I will never say that Mark lost the battle to cancer; I don’t believe he did. I believe he beat cancer in so many ways. And I believe that without the stroke, he would have kept fighting. I won’t say that Mark gave up or decided to stop fighting. I don’t believe that when someone’s body has finally had enough, it’s a sign of giving up or defeat. As Dr. Kendra said, it’s not that he’s giving up; he’s searching for peace.
I will want to say something about the fact that Mark was like a walking party. He brought joy and fun with him everywhere he went. Even before his cancer, Mark was a person who lived life to the fullest and absorbed every moment. Being single for the first 35 years of his life, Mark was able to do things that many people haven’t done. He traveled the world, and took pictures along the way. He even had a long ponytail when I first met him. Somehow, I feel like a man having a long ponytail demonstrates living life fully. That being said, I am glad he cut it off. ☺
Although he’s not a country music fan, Mark really liked the song “Live like you were dying” by Tim McGraw. I believe Mark always lived his life that way, but made an even more conscious effort to do so over the last six years. He went white water rafting, even though he can’t swim, he drove to Wisconsin when the Antique Road Show was there, he went to New Mexico several times, and started making a five year plan to find property and move there.
If he were able to talk and could give one last wish to the people he loves and cares about, I believe that it would be to live life like you were dying; with no regrets and taking in and truly appreciating each and every moment you have. I know that Mark believed life really is a gift and I don’t think he ever took that gift for granted.
For the last few weeks, I have heard George Strait’s new song, “The Breath You Take” on the radio on my way to work. I cried every time I heard it (which shouldn’t come as a surprise to those of you who know me well) just because I was so touched by the words. I was thinking about that song today and about the new meaning it will hold for me after Mark is gone. He was a living example that life is not measured by the breaths you take but by the moments that take your breath away.
I would encourage you to listen to the song, which again is a country song that Mark probably wouldn’t like, and listen to the lyrics. Mark may not like the song or the artist, but I know he would agree with the lyrics.
Just as I have explained that living in the body of a stroke victim is Mark’s worst nightmare, sitting, staring and waiting for death is mine. I have feared death since I was ten years old when I lost my brother. I find myself going back and forth between wishing I could be anywhere but here, but yet, I can’t really imagine being anywhere else. I’m afraid to leave for a second in fear of not being here for him as he takes his last breath and being here for my mom. Every time there is a break between his breaths, I feel a wave of panic that this might be it and I just don't know how I'm going to react.
When I started this blog, I never thought about the day when I would write my last entry. But over the last few days, that’s all I’ve been thinking about. What will I say to bring to a close the last six years that Mark has been battling this awful disease? What will I say to fully honor Mark’s life and legacy?
Although it’s not quite time for that yet, I have already thought about some things I do and do not want to say. I will never say that Mark lost the battle to cancer; I don’t believe he did. I believe he beat cancer in so many ways. And I believe that without the stroke, he would have kept fighting. I won’t say that Mark gave up or decided to stop fighting. I don’t believe that when someone’s body has finally had enough, it’s a sign of giving up or defeat. As Dr. Kendra said, it’s not that he’s giving up; he’s searching for peace.
I will want to say something about the fact that Mark was like a walking party. He brought joy and fun with him everywhere he went. Even before his cancer, Mark was a person who lived life to the fullest and absorbed every moment. Being single for the first 35 years of his life, Mark was able to do things that many people haven’t done. He traveled the world, and took pictures along the way. He even had a long ponytail when I first met him. Somehow, I feel like a man having a long ponytail demonstrates living life fully. That being said, I am glad he cut it off. ☺
Although he’s not a country music fan, Mark really liked the song “Live like you were dying” by Tim McGraw. I believe Mark always lived his life that way, but made an even more conscious effort to do so over the last six years. He went white water rafting, even though he can’t swim, he drove to Wisconsin when the Antique Road Show was there, he went to New Mexico several times, and started making a five year plan to find property and move there.
If he were able to talk and could give one last wish to the people he loves and cares about, I believe that it would be to live life like you were dying; with no regrets and taking in and truly appreciating each and every moment you have. I know that Mark believed life really is a gift and I don’t think he ever took that gift for granted.
For the last few weeks, I have heard George Strait’s new song, “The Breath You Take” on the radio on my way to work. I cried every time I heard it (which shouldn’t come as a surprise to those of you who know me well) just because I was so touched by the words. I was thinking about that song today and about the new meaning it will hold for me after Mark is gone. He was a living example that life is not measured by the breaths you take but by the moments that take your breath away.
I would encourage you to listen to the song, which again is a country song that Mark probably wouldn’t like, and listen to the lyrics. Mark may not like the song or the artist, but I know he would agree with the lyrics.
Saturday, January 22, 2011
Sitting and waiting
While I’m sitting here watching him sleep, watching him breathe, I keep trying to think about what it’s going to feel like when he stops. What is it going to feel like at that moment when I know for sure he is gone forever? When I know that he has taken his last breath? The answer is, I have no idea what it’s going to feel like. I just know that it’s going to hurt. A lot. This is the thing I think a lot of people are confused about with hospice, cancer and the kind of death that you know is coming.
I’ve heard many people try to compare the different types of deaths and try to say, “well, they knew it was coming,” or “well they had been sick for a long time,” as if that somehow means that they were prepared for someone’s death and that it didn’t hurt as badly. I have probably said it myself. How wrong I was to assume that just because you know something is coming, that you could ever possibly prepare yourself for a loss so great.
I don’t feel prepared at all. I don’t feel okay about the situation just because he’s been battling the disease for six years. I don’t feel ready to let him go. I don’t feel ready to think about life without him. I don’t feel ready to accept the fact that he will never know my children. I don’t feel like his last breaths are going to be any easier for me just because I’ve known for six years that this day would come eventually.
I don’t like to think about Thanksgiving without his apple pies or football games without his chicken wings. I don’t like to think about any holiday without his company. I am so thankful to have been able to spend Thanksgiving and Christmas with him this year. I’m so sad we didn’t get to spend New Year’s Eve together like we had planned.
When we got back from eating dinner tonight, he was alert again and I got to hold his hand and tell him once again how much I love him. The nurse said he is starting to show signs that peace is near but his vitals are still pretty good. It won't be hours but will most likely be within the next day or two. He is resting comfortably and doesn't seem to be in any pain.
It’s an awful feeling sitting and waiting for someone to die. At one moment you are hoping they go quickly so they will be free of pain and suffering. Then you think about them going quickly and you start to panic and think that you’re not ready for them to go. You want more time with them. You want to hold tell them you love them one more time. You want to hold their hand for a few more minutes. Then you start thinking you’re being selfish for not being ready to them to go and then you once again start hoping they go quickly.
But as the nurse explained to my mom, none of it is in our control.
Mark is trying to find peace and I am too
It’s an extremely helpless feeling watching people you love, especially your parents, go through so much pain and suffering, knowing there is absolutely nothing you can do to change the situation or make it any better for them. It’s such a strange feeling to sit and stare at someone who is still alive and breathing, but know that you are already grieving for their death. It’s such an awful feeling to have to say goodbye to one of the most important people in your life and never get to hear them say it back to you. It’s a heartbreaking experience to continue thinking about all the things in life you wanted them to be a part of, knowing that they won’t be.
I never expected to “lose” Mark this way. I never saw something like a stroke coming. No one did. Not even his doctors. I always expected to get a few weeks or a few months notice before this was really “it.” I always expected to be able to talk to Mark about it when the day finally came.
If we were going to have to lose him to the cancer no matter what, the stroke was just cruel. That’s the best way I can describe it. If we were going to have to say goodbye, it shouldn’t be like this. Mark should have had time to go home, make sure that he got everything in order and know that he was taking care of my mom one last time before he no longer could. That is how he would have wanted it.
If we were going to have to say goodbye to him anyway, Mark should have been able to talk. He should have been able to communicate with us. He should have been able to tell us that everything is going to be okay and that he’s ready to find peace. That is how he would have wanted it.
For the last week, I feel like I could see the frustration, despair and helplessness in his eyes. The stroke was his worst nightmare coming true. Mark, a person who has to be in control is no longer able to control his bodily functions, his communication and parts of his body. He never wanted to be like that.
I was terrified to spend that first night alone with Mark in the hospital, but I knew it was something I could do to help my mom; let her go home and try to get a good night’s sleep. And she did. I was terrified that he would have another stroke and that I would be the only one there. He didn’t really sleep much, and either did I. So I stayed up with him and talked. I used that time to tell him everything I ever wanted him to know. It was before I knew for sure that this was really “it,” and it made it so much easier for me. I was able to say it all, without all the tears and sadness. Just my heartfelt words about how lucky I feel to have had him in my life and to be loved by him for the last twenty years.
I thanked him for loving me unconditionally, like I was his own child. Even though I wasn’t. I thanked him for always wanting me to have nicer things than he had. I reminded him of the time he helped me get my Toyota Corolla when I was in grad school. He wanted so badly for me to have a reliable car. He did all the research and found the car he wanted me to have.
He took out a loan from the bank in his name, knowing that I would pay him back when I could. I didn’t realize the significance of this at the time. It wasn’t until Pat’s parents co-signed for his car loan that I realized what a big deal it really was. The loan officer asked Pat’s dad several times if he was sure he wanted to sign on Pat’s loan, explaining that she wouldn’t do that for her own kids. And yet, Mark never thought twice about doing it for me, his step-daughter.
We drove together to Parma Heights to pick up the car. We took it around for a test drive and then he bought it for me. I drove it home and Mark followed me in his car. The weather was horrible. We were driving in a torrential downpour, which scared me. Then, the gas light came on in my new car. I was terrified. I was so afraid I was going to run out of gas in this horrible storm. Mark didn’t have a cell phone so I pulled over on the highway. When he came running up to my car window, I told him that we needed to go get gas and that my car wasn’t going to make it much longer. Mark explained that we needed to make it to Ashland before we would find a gas station. He then said to me, very confidently and matter-of-factly, “Emily, you have to keep going.”
That is how Mark lived his life; under the belief that no matter what life throws at you, you have to keep going. And he did. He kept going longer than any doctor or any statistic ever said he could. He was poked, prodded, cut open and medicated more than any person deserves. And with each new tumor, he never thought twice about doing it all again. He had a will to live unlike anyone I’ve ever met. That is why it breaks my heart to know that he won’t get to live much longer. I did make it to Ashland without running out of gas, and he was with me every step of the way.
He was there for me as I learned how to drive, there for me when I was at a party with alcohol and didn’t want to be there, he was there for me when I put my sisters car in a ditch and he was at the Verizon store the very next day getting me my first cell phone, adding me to his wireless plan so I would never be stranded without communication again. He has been there for me so many times over the last twenty years, which is why it was so important to me during this last week to be there for him. I was prepared to be there for him as he recovered from a stroke, and now I am trying to prepare myself to be there with him as he takes his last breaths of life.
I do find peace in the fact that Mark will never make another visit to the James Cancer Center. Mark will never have bolts drilled into his head again for a Gamma Knife procedure. Mark will never have to have another operation or sign up for another clinical trial, not knowing what awful side effects it will have on his body. Mark will not have to endure all the months of physical, occupational and speech therapy it would take to try and rehabilitate from the stroke. He won’t have to accept the fact that he might not have ever walked again, might not have ever been able to sing again and might not have ever been able to play the guitar again. I know that he would have done any and all of the above to have more time to live, but I’m glad he doesn’t have to.
In case you need some reminders of the courageous and caring kind of person Mark is, here are a few older links from the blog:
Friday, January 21, 2011
Resting comfortably at the hospice
Mark arrived safely to hospice early this evening. The trip was uneventful and Mark is worn out. His room is absolutely perfect for him. It's big and has a great view of the woods and a bird feeder right outside of his window.
So far my mom is just thrilled with the care at hospice. She really feels so much more relaxed and comfortable here and she knows that Mark does too. The doctor came in to talk with us and explained that Mark probably only has a few days to a week before he finds peace.
Mark is in room 104 and the hospice address is:
1050 Dauch Dr.
Ashland, Ohio 44805
So far my mom is just thrilled with the care at hospice. She really feels so much more relaxed and comfortable here and she knows that Mark does too. The doctor came in to talk with us and explained that Mark probably only has a few days to a week before he finds peace.
Mark is in room 104 and the hospice address is:
1050 Dauch Dr.
Ashland, Ohio 44805
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