Mark's memorial service

I'm sure Mark would have been very touched, and humbled, by the amount of people who came to the calling hours and memorial service yesterday in his honor. I was humbled for him by the amount of people he touched along his journey just by being him; the fun, happy, hardworking with a smile, Mark.

He is going to be missed by many, many people and that became very obvious yesterday. Someone said to me, "There will be a hole in the community without Mark." I thought that was so touching and I know Mark would, too.

I wanted to share the words I said on Mark's behalf and the video we made for his memorial service.

There are so many things I could say about how sad I am and how much I already miss Mark. But in honor of my step-dad, the eternal optimist, I am going to try and keep this positive. This will also increase the very small chance of me getting through this without crying.

I was eight years old when I first met Mark. They were having band practice in my mom’s art studio. Mark had a long ponytail in the back, which in my eight-year-old mind, meant he was a criminal. Before they started playing their music, he said, “Let’s get funky.” I thought funky was the F word so needless to say; the eight-year-old Emily did not have a very good first impression of Mark.

Of course that all changed. The ponytail was cut off and Mark quickly became one of the most important people in my life. He spoiled me rotten, more than I ever deserved. Dinner was always based around what I wanted to eat, and unlike my mom, he even omitted the ingredients I didn’t like.

Mark shared my love for animals and I could always count on him to help me when I thought an animal was injured or needed help. I remember finding a bird that I didn’t think could fly and Mark came home on his lunch break to help me. I don’t remember exactly what happened after we trapped the bird, but I’m pretty sure it ended up flying away on its own.

Mark wasn’t quite as much of a softy when I would bring stray animals home, at first anyway. I hid a kitten in my room for over a week before I got caught. As soon as Mark found the kitten, he took her back to the park where I found her and dropped her off. I cried and cried until he finally went back to find her and brought her home. She still lives in their log home today.

Mark was “living like he was dying” long before he was ever diagnosed with cancer. He would never miss an opportunity to try something new or do something fun and adventurous. When we went on a cruise in 2001, we went on a snorkeling excursion. It might not seem like a big deal, but for Mark, who couldn’t swim, it was kind of scary! Out of the nearly 60 people who were on that snorkeling excursion, Mark was the only person who put on the big, bright orange life jacket, on top of the black ones they provided us with. And he wasn’t embarrassed about it all. I certainly was, but he wasn’t. He didn’t care what people thought of him, it was more important to him that he didn’t let fear keep him from trying something new.

If Mark would have only lived the six months he was originally told he would live, he never would have met Pat, he wouldn’t have been Grandpa Mark to Max and he wouldn’t have been there to support me on my wedding day.

I think many people know that it was the clinical trial in the summer of 2005 that ultimately kept Mark around for almost six years after his diagnosis. But what I don’t think a lot of people realize is that Mark found that clinical trial himself. No one recommended that he go to the James Cancer Hospital in OSU or that he enroll in that clinical trial. Mark was his own patient advocate for the entire six years he battled this disease. He did all of the research online, found the clinical trial and found Dr. Kendra and knew that is where he needed to be for a chance to live. I think that says a lot about Mark’s character and his passion for life.

I’ve spent the last few days re-reading all that I wrote in Mark’s blogs over the last few years and something occurred to me; I don’t think I ever really took the time to think about what this battle must have been like for Mark until now. He was so brave and positive through it all that I never thought about how hard it must have been for him. I think we all got so used to him just bouncing back, that we took for granted how very difficult and how much work bouncing back must have been for him.

He truly made it all look so easy, I think we actually believed that it was. Spending the last week or so with Mark in the hospital, gave me my first real, up close and personal glimpse of what this battle must have been like for him (and my mom). I spent the last six years thinking about myself; how much I love him and how thankful I was to still have him in my life. I’m just not sure I ever thought about the toll it was taking on him, and my mom, to keep going. To keep fighting. He deserves peace and happiness more than anyone I’ve ever met, and now he has finally found it.

Mark Yarman: A Vision of Hope from Emily Robinson on Vimeo.

God's gift of time

Words are so powerful to me. I received a really nice card in the mail and the words perfectly describe how I'm feeling. I wanted to share them in case they could be helpful to you, too, as we are all mourning the loss of Mark.

We all need a time to grieve-
quiet time for reflection
to sift through memories
and come to grips
with what has happened.

We all need a time for tears,
not for the one who is now
at peace in heaven,
but for ourselves as we realize
that things will never be the same.

We all need a time to just "be,"
when we can open ourselves to God
and let the reassurance
of His everlasting love
start to heal our broken hearts.

Videographer loses fight with cancer - Mansfield News Journal

A very nice article about Mark in the Mansfield News Journal.

Videographer loses fight with cancer

Mark featured on WMFD news tonight

WMFD - Mark's employer, did a really nice video piece and written article about Mark for the news tonight. It brought us all to tears since we haven't heard his voice since the stroke. It was so nice to hear it again! He was such a special, special man.

Read the full article here. Watch the video below.

The end of one journey and the beginning of another

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.

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.

Somewhere over the rainbow

On November 1, 2010, I posted the following note and song on Mark's facebook fan page:

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.

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:

Preparing For Another Battle

Five Years and Counting

The Hand that Gives You Roses

Celebrate We Will

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
 

Going to hospice today

The nurse practitioner just came to let us know that transportation has been scheduled to take Mark to Hospice of North Central Ohio today at 2:00 p.m. We are glad that things are actually moving and are just anxious to get him to a place where he is more comfortable. Most of all, we are excited to bring his dog there to see him. The dog he didn't want, the dog that was supposed to be mine and the dog that was by his side for the entire six years of his battle.

Mark is very alert today and responds to all of his visitors. I just watched him say goodbye to one of his best friends, a friend that didn't miss one of Mark's IL2 clinical trial treatments in 2005. As Mark hugged him, and caressed his face, I am very confident Mark knew he was saying goodbye to him forever.

We've been showing him pictures and are making sure someone is always holding his hand. Today is my mom and Mark's 15th Wedding Anniversary. She reads the anniversary card she bought for him out loud and each time, he reaches for her head and gives her a kiss.

Yesterday, he let me cry on his shoulder and patted my head and back with his good arm, trying to comfort me. It's amazing that even now, he is still being the strong and brave one. Through this entire battle, he has always tried to protect me, sugar coating all the bad scans and the even worse statistics. I'm sure if he could talk, he would find a way to sugar coat the dying process for me as well.

A visit from Dr. Kendra

Mark's doctor and friend, Dr. Kendra, just came to visit him again. She didn't seem to agree with the 2 weeks to 2 months time frame. She thinks Mark will "find peace" much sooner than that. It was really touching to see her get emotional with Mark and seeing how much further their relationship goes than just doctor and patient. Further proof that everyone who knows Mark cares about him. He's a special, special person.

I will keep everyone updated about how the plans to move him to hospice go tomorrow. At this point, we are just praying for Mark to find peace that is free of pain, free of cancer and free of the debilitating stroke. To wish for anything else at this point would be selfish.

Making the arrangements for hospice

Mom and Mark have decided that Mark will be most comfortable spending the time he has left as an inpatient in hospice. Mom spoke with the social worker at the hospital and she is making the arrangements. If all goes as planned, Mark will be staying at the Hospice of North Central Ohio in Ashland, Ohio and will be transported sometime tomorrow. If not tomorrow, then Saturday.

The doctors can't really predict how much time Mark has left but they said it could be anywhere between two weeks and two months before the cancer causes him to die, assuming he is still getting hydration. Otherwise, it will be less time. We don't know yet whether or not the hospice will even use the feeding tube, because it is considered a form of life support, so the prognosis may change once we talk with them.

I have to be honest and tell you what a change in Mark's spirit and appearance I have seen since he heard about the news of the cancer in his lungs and going to hospice. Even though hospice is what he wants, his face looks sad and defeated. And I, unfortunately, can't keep it together for him and just cry every time I look at him. I'm obviously not helping anything.

I know it must sound crazy for me to say this, after all that he has been through for the last six years, but I feel like this has all happened so fast. I talked to him on Friday and he sounded great. He was feeling good, eating well and so proud of himself for working a full week. I had no idea that would be the last time I would ever hear his voice. I'm just having a really hard time handling all of this information, to say the least. I start thinking about what life without Mark will feel like, and it's too sad of a life to think about.

The roller coaster we call Cancer

It's never a good sign when the doctors come in, pull up chairs and sit on both sides of you. They were coming to bring my mom the results of Mark's CT scan of the chest. The cat scans show aggressive disease in Mark's lungs, including blood clots and one of the lesions they actually called huge. It was too big to actually determine it's size because it was bigger than the camera view.

The doctors gave my mom two options: Mark can go straight to hospice and stay comfortable or go to rehab and work on the therapy, knowing there is nothing that can be done for this aggressive cancer in his lungs. They said that some facilities could do both, but you have to decide if it's worth putting his body through the intensive therapy knowing the state of the cancer.

Mom isn't going to make any decisions until Dr. Kendra comes in to talk to her and Mark tomorrow, but it's looking like it has taken two diseases to win the battle against Mark. The cancer couldn't do it, but the stroke and cancer together might.

Mom and Mark have to make the decision tomorrow. Mom is still digesting the news and isn't ready to talk to anyone on the phone yet, so she wanted to make sure I let everyone know.

Thanks for all the prayers and support. I want you to know that I read all of your thoughts and wishes to Mark and I know that he was and always has been touched by all of the support he has received. He's a special man and that's why we all love him so much!

Trying for a PEG tube at 10:30!

Mark had a CT of the chest last night and an echocardiogram of the heart this morning. We don't know the results of either yet but depending on the results of the echo, he may need another one today with a camera.

He's going down for the peg tube (feeding tube) at 10:30 a.m. so he'll be going soon! This is where they try to go through the nose, so surgery isn't required. We are really hoping it works because even after the tube goes in, they can't put food through it for another 24 hours. And he really needs (and wants) food!

Please pray that the procedure is successful!

Life after stroke - evening of day 4

All I can say is what a roller coaster and poor Mark. Lots going on today. I feel like the walls are closing in around me. That's the best way I can describe how I feel right now. And if I feel like this, I can't imagine how my Mom and Mark feel. Mom found out from Mark's work today that his insurance runs out at the end of the month. We filed for disability but mom was told that Medicare won't start until a year after he's been approved for disability. That is just another element in the mix right now...

Mark did not pass the Barium Swallow Test this morning. At this time, it's still too dangerous for him to eat or drink anything by mouth.  We had already been told that by a speech therapist and Dr. Kendra, but this test proved it for sure. This means, he needs a feeding tube to get the nutrients he needs. The barium from the test is also causing him to be extremely nauseous and he just threw up. This is really scary for someone who can't swallow because the fluid could get into his lungs. 

This morning, a physical therapist and occupational therapist came for a session with Mark. He did a lot of amazing stuff for them. He was sitting up on his own. They helped him stand up and they were barely having to support him and then they got him sitting up in a chair. After that intense workout, and the fact that he was making progress, Mark had a HUGE smile on his face when he was done and started crying. You could see his top and bottom teeth - on BOTH sides of his mouth. We have not seen this kind of facial expression or show of emotion from him yet and I see that as a huge improvement. The therapists were very encouraged by what Mark did and said that is a good sign about how he might improve in therapy.

A nurse practitioner came to see Mark, someone who knows a lot about his history, and was very happy to hear how well he did in therapy. She was also happy to hear about improvements in showing facial expressions and emotion. She thought those were all good signs that he should be given the chance to keep fighting and get the feeding tubes. However, she explained that Mark's team had discussed the feeding tube and the neurologists on the team weren't convinced that Mark should have it. They were concerned about his quality of life and keeping him alive if he never regains the ability to communicate.

For that reason, a team of neurologists came to do an assessment of Mark's responsiveness. They still believe he is not responding to verbal cues. Mark's favorite neurologist, Dr. Cavalari, came to talk to us and shared the same concerns as the other neuro doctors; it all comes down to quality of life. He seemed to agree with the feeding tube decision right now, but said the really difficult decision will come in a few weeks as we discover what does and doesn't repair after the stroke. That will be the question of quality of life but he agreed, we won't really start to get answers about Mark's progress for a few weeks.

Shortly after Dr. Cavalari left, a GI doctor came in to discuss the feeding tube options. He wanted to try to go down through the nose, even though Dr. Kendra didn't think this would work given Mark's bowel recession surgery, the GI seemed to strongly recommend trying it first. It's a safer procedure and they won't really know whether they can or can't do it that way until they try. However, they wouldn't try until tomorrow and if it didn't work, he wouldn't get the surgery for the feeding tube until Thursday, at the earliest. As of now, that is the plan.

They are trying to get the feeding tube procedure (through the nose) scheduled for tomorrow and we hope that it will work! Otherwise, they will have to schedule the surgery. He's also scheduled to get a CT scan of the chest tonight at 9:00 p.m., just to see what is going on with the tumors in his lungs. His team of doctors just want to have an understanding of the whole picture with his body and this will help to give them that.

He has had a very long day (we all have) and he is sleeping like a baby.

Life after stroke - morning of day 4

Last night I had a really good session with Mark! I made him work his brain, as Dr. Kendra said we should, and practiced saying yes and no with his nonverbals. He did excellent! The only thing I will say is that he was very inconsistent about what he wanted to do for yes. Maybe this proves that he doesn't understand every command or maybe it shows that he can't always get his body to do what he wants, I'm not sure.

Because I felt like he really understood what I was saying, I talked to him about the feeding tube situation. I gave him all the information that has been given to us and explained that we would really like to know what he wants to do. I asked him several times if he wants the surgery for the feeding tube. As adamantly as someone can say something with their nonverbals, Mark said, "Hell yes I want a feeding tube!" After a few more questions, he just as adamantly said to me, "Hell yes I want you to leave me alone now!" So I did.

Mark didn't sleep very well last night (and of course either did I). He gets more and more phlegm each day and it's difficult for him to cough it up and swallow it. I think that was part of the reason he didn't sleep well. I think another part was that he was in pain a few times before he was able to get more pain medicine. At 5:30 he wanted more pain medicine (again, if our nonverbal system is working well) but the nurse said he couldn't have anymore until 7:15 (which he did get and seems more comfortable).

The final reason I don't think he slept well is because he wants food. I only came to this conclusion by process of elimination when I couldn't figure out what he wanted and he didn't raise his hand until I said hungry/food. It's really difficult for me when he tells me he wants food because I can't just push a button for the nurse and get him food like I can with everything else. There's absolutely nothing I can do but tell him that we're trying to get it moving in that direction!

Mom found his living will at home this morning (thank God!) since the hospital kept trying to tell us it didn't exist and they kept saying they have no proof that Mark and my mom are even married. Having a copy of the living will is great news so that we don't run into any power of attorney issues if he can't physically indicate to the doctors that he wants the surgery (although we've been working on it a lot and I think he would be able to on his own).

A doctor should be in to see him within the next hour. Thanks to so many of your suggestions, I definitely plan to ask the doctor about the option of him getting nutrients through the IV. Not sure why a TPN was never mentioned to us, but thanks to you sharing your experiences with me, I now know this could be an option and I plan to ask them for it! At 9:00 a.m. he goes down for a Barium Swallow Test, getting us one step closer to getting the feeding tube situation figured out.

It isn't likely that he would have the surgery today, although if we have any say in it we will push for it, like we know he would. It will more than likely be tomorrow. In the meantime, I would love it if he could get some nutrients through the IV and build some strength for the surgery. I act like I know what I'm talking about, but please know that I really don't. I have no idea if TPN is an option for Mark, if it would even make a difference to give him more strength, etc. But I would rather ask and have a doctor explain to me why not than never ask at all.

Since there's so much going on today, I will try to write several updates to make sure and keep you all in the loop. Thank goodness for the free and easy to access Wifi at the James!

I hope you know how much your support means to all of us. We appreciate the prayers and they must be working because I was terrified to spend the night alone here again last night, but somehow we are all finding strength we didn't know we had!

Life after stroke day 3

The Speech Therapist came to do Mark's evaluation this morning. The results of the evaluation  confirmed what the doctors have been telling us; Mark will mimic and follow visual cues, but he does not consistently follow the verbal commands of any doctors, nurses or therapists. For example, she asked him to make a fist and he opened his mouth, but when she showed him to count with his fingers, he did it.

More importantly, the evaluation confirmed that Mark isn't able to swallow or cough. This means he cannot eat or drink. He's already skin and bones and can't afford to continue losing weight. This morning, at my mom's request, I emailed Mark's doctor, Dr. Kendra, who has been with him from the very beginning. I explained to her that Mark had a stroke, isn't responding well to the other doctors and would really appreciate getting to see her.

Within a few hours, Dr. Kendra showed up in Mark's hospital room, on her day off. I can't tell you how much Mark perked up when he saw her and how much it means to us the way she goes above and beyond her call of duty for him. It was very obvious that she cares about Mark a lot and I could tell it was difficult for her to see him this way, after all that he's been through.

Dr. Kendra was the first doctor to actually come and talk to Mark directly and explained to him what has happened to him and what the future might look like. He was very responsive to her and followed all of her verbal commands. You could tell he wanted so badly to ask her questions but couldn't get them out. She printed out his most recent scans for him and went over all the reports. She explained to him that the tumors in his brain have gotten smaller, showing that his clinical trial is working.

She also did a quick test of her own to see if Mark could swallow, and agreed with the speech therapist that he cannot. Dr. Kendra explained that there is a very important decision to be made in the next day or two. Mark has not been able to eat or drink anything since his stroke. He can only go another day or two without eating. Since he can't swallow, the only way he will be able to get food is through a feeding tube.

Based on the condition of his digestive system, from the surgeries and procedures he's had in that area, in order to get a feeding tube, he will need surgery. Mark is not in great condition to get a surgery. There is a chance he would not survive the surgery to get the feeding tube. And he definitely won't survive without a feeding tube.

So my mom and Mark need to decide in the next day whether or not Mark wants to keep fighting. It gets even trickier. Mark's brain is still in shock from the stroke. We don't know yet what effects from the Stroke are permanent and won't know for possibly four more days. The feeding tube decision needs to be made before then. Dr. Kendra explained that even if they decide to have the feeding tube surgery, Mark can change his mind at any point and say stop.

My mom feels that after all Mark has done to fight for his life, he would not want to die from not eating. She believes that he would want to have this surgery to give him a chance to keep fighting. So tomorrow morning, she plans to try and get the ball moving for him to have that surgery. She understands that he could die from the surgery, but she knows he would rather die fighting than die starving.

So that is where we stand at this point. Mom just left to get a good night's sleep at home. I'm staying here so that Mark isn't alone. The next few days are going to be very important for Mark and very difficult for my mom. Please keep them both in your prayers.

Stroke - Day Two

Mark had a pretty good night last night. Mom went home to let their dogs out and to try to get a good night's sleep since she's fighting a bad cold. Pat and I stayed in Columbus - he at his sister's and me in the room with Mark. He slept pretty well (as well as you can sleep with nurses coming in every 45 minutes. I learned that the hard way last night).

A  physical therapist came to evaluate Mark this morning. Although he still has no movement in his right side, she did feel some tingling and twitching in his right arm. She thought it could be a response to his left arm moving and his right arm trying to do the same. She sat him up for twenty minutes and seemed encouraged by the fact that he was able to support himself, even using his good arm to help the physical therapist sit him up.

When my mom arrived back to the hospital this morning, Mark was very excited to see her. He leaned his head up and even made a slight noise, which is the first we've heard him do that. He's made a few slight noises since and we are taking that as a positive sign!

Several doctors have come to evaluate Mark today and Mark did not follow any of their commands ore requests, unless they demonstrated it visually. This led them to believe that he is not responding to or comprehending verbal cues but we disagree. As soon as they left the room, I asked him to give me a thumbs up and he raised his arm. My mom asked him to give her a kiss, and he raised his head up to do it. The doctor asked him to open his mouth and he did. There is a chance that he only comprehends some of the requests. Or, we've decided that maybe he is just picking and choosing who he wants to use his limited energy on and it's not the doctors!

It's been very frustrating trying to determine whether or not he's in pain because he can't really communicate with us and we're always wondering if he is. We decided if he was really in pain, he would try to tell us. This afternoon, he was squirming like he couldn't get comfortable so I went and asked him to raise his hand if he was in pain. He raised his hand right away. But then I wondered if maybe he only heard the first half of my question about raising his hand so I turned around to ask my mom if I should ask him again. Before I could even ask him again he raised his hand up. We thought that was a pretty obvious sign so we went and told the nurse. He should be getting on pain medication very soon. 

We also think you can read his nonverbals on his face to know when he's agitated, mad and when he's happy. I heard one very encouraging piece of information from one of the doctors today. He explained that we will learn a lot over the next few days. Mark's brain is still swollen from the stroke. So as the swelling goes down over the next few days, we should see some improvements and that will give us a better idea about the severity of the permanent damage from the stroke. So I am hanging on to what I believe sounds like something hopeful!

Mom will be staying with him tonight, I'm going back home to try and get a good night's sleep and I will be coming back again tomorrow and at that point, we'll just be taking it day by day.

Full update on Mark, starting at 4:30 a.m.

Mark called me on his way home from work yesterday and sounded the best I've heard him in a long time. He was so proud of himself for working a full forty-hour week after all he's been through and how weak he still is. He went home, had a good, full meal that my Mom made him. He went to bed around 9:30 p.m. and was still acting completely normal.

Around 4:30 a.m. this morning my mom woke up to mark flailing around, almost as if he was having a seizure. He knocked over the bedside table and my mom thought maybe he was having a dream. She tried to wake him up but he was nonresponsive. His eyes were open but he couldn't respond to her. He wasn't able to control any of his bodily functions and that's when my mom knew something was very wrong. She told Mark to hold still while she called 911. The medics came to their house (and luckily had four wheel drive so they were able to make it up their steep driveway). They had to carry Mark down the spiral staircase because they couldn't get the stretcher up or down the stairs.

Mark arrived to MedCentral Mansfield and they did a CT scan of his brain which didn't really show anything they needed to see. They didn't have the capability of doing an MRI there so they started the transfer process to get him to the James Cancer Hospital at OSU. He was showing signs of a stroke as he couldn't move the right side of his body or speak but no one could really say for sure without an MRI.

He arrived at OSU and they took him for an MRI shortly after. A few hours later, a resident Neurologist came to do some more testing. He had a toothpick that he was using to poke Mark in his head, arms, chest, legs, etc. It was really painful for Mark where he could feel it and it was really hard for us to watch someone doing that to him! It was really scary to see them poking his right side and him not feeling anything. He said it was narrowed down to either a stroke or vasculitis. After gathering some information, the resident went to call the attending Neurologist before he would give us any type of prognosis.

He came back after talking to the attending and said they were pretty sure Mark had a stroke due to the cancer causing his blood to thicken and areas of his brain not getting enough blood. Unfortunately, he said it hit Mark in all the "right" places, affecting his speech, ability to comprehend things and move his right side of his body. On the stroke scale, he said it most definitely wasn't mild but of course, could have been worse. It's important that Mark start speech, occupational and physical therapy right away. He couldn't give us any indication as to how Mark will progress or what we should expect as far as him gaining his speech and feeling back. It varies by person and is a day-to-day process.

They want to do a few more tests so that they can determine what exactly caused the stroke and prevent anymore from happening. For the most part, he seems to understand when you're talking to him. I got him to give me a thumbs up and when Betsy arrived with Max, Mark completely perked up. He leaned his head out to kiss Max and it was very touching. Max sure knows how to light up a room!

It's still a very scary road ahead with no real answers about when Mark will get "better" and what exactly better will look like. What we do know is that whatever statistics they throw at Mark, he will most certainly try his hardest to beat them!

On the road to recovery

I talked to Mark on Monday and then again tonight he sounds really good. He acknowledged that it is going to be a long process of weeks or even months before he gains his weight and strength back, but he sounds so relieved to be actually showing some signs of progress, moving him in that direction.

He went to see Dr. Kendra at OSU yesterday. His brother Greg, who is still here from California and has been a tremendous help and relief to both my mom and mark, drove him to his appointment since my mom had to work. It was a really good visit for several reasons. First of all, when she asked Mark what he was taking for pain medication and he answered "three Advil," she said that would be changing immediately. She gave him two different pain prescriptions. One to help with his overall pain and one to help the more targeted pain in his shoulders and elbows, which she explained is neuropathic pain. She told him that the reason the tumor under his arm (which has been surgically removed once before but has since returned) is hurting so badly again is because he lost all the fat and muscle around it that used to cushion it.

She also explained to him that even though he has been able to eat and drink, the food isn't staying in his body long enough to absorb much of the nutrients which is why he's having trouble gaining his weight back. He weighed in at only 139 pounds yesterday which is only up four pounds from his all-time low in the hospital last week. The pain medications that she prescribed will also help his food stay in his body longer, allowing him to absorb the nutrients and start gaining his weight back.

Just to give you an idea of how "skin and bones" he really is, when his brother Greg dropped him off at the door of the James yesterday while he went to park the car, Mark couldn't even sit on the wooden benches outside because he had no meat on him and his bones were touching the wooden bench. I was really disappointed to hear that the people working in the valet area didn't help him get a wheelchair after he realized he couldn't sit on the benches and needed one. What is wrong with people? But then when two ladies in the hospital saw him struggling to walk, they offered to get him one, showing that there are still some good people out there!

His blood results looked really good, much better than Mark's physical appearance would have indicated, Dr. Kendra said. She wants to see him again in two weeks to see how he is improving and will be having new scans around January 15th. She emphasized to Mark that a delayed response is very common with the Ippy Clinical Trial and warned him not to get discouraged if results aren't seen right away. Dr. Kendra also reminded Mark of the many times he has bounced back before and it seems she thinks he will again.

When Mark called my mom today, he was so happy to be free of pain and was thrilled with how well the pain medications were working. He didn't even realize how much chronic pain he had until it was gone today. Mark said if he could continue feeling like he felt today, it would be really good. The pain medication is really helping with his energy levels, too. "If today was any indication, I'm definitely on the right road," Mark said.

It sounds like Mark is definitely moving in the right direction. My mom just got off work and is on a mission to find him some cherry flavored water that he wanted. She's going to try to give him all the food and drinks he wants (and is able to eat) to help fatten him up!

Thanks, as always, for the thoughts and prayers! They are much appreciated!

Mark is coming home today!

Despite the bummer of spending New Year's Eve in the hospital, Mark has made great progress over the last few days! He's been able to eat and drink and has already gained six pounds since he's been there! He had a big breakfast of pancakes this morning and my mom said he looks better than he has in weeks!

The tests he had done yesterday must not have shown anything concerning because the doctors have decided to release Mark today. He will be going back to their house in Butler this afternoon and hopefully will be able to continue to eat and drink and gain his weight and strength back.

Thanks for all the prayers! Things are definitely looking up! Wishing Mark and all of you a very Happy and HEALTHY New Year!