Thursday, March 20, 2014

New update on Mark

Today was a very rough, emotional day for me. I spent the morning procrastinating my run (per usual), and when I finally get dressed to run, my mom called. She told me that she got a call from "C" at Mark's group home, and it turns out that Mark isn't doing very well. His health went downhill very quickly once he was back home. C said that the doctor was going to go to the home to check on him, so I wanted to get there to hear what the doctor had to say.

I changed clothes as quickly as I could, and rushed out the door. When I got there, Mark was sleeping, so I talked to C for about an hour while we waited for the doctor to get there. She told me what was going on with Mark--he can't get up and walk, even with his walker, he's constantly sleeping, and he was having trouble swallowing. His memory seemed a little fuzzy, and some of the things he's said to her have been "off". 

I had attributed the sleepiness and lethargy to his pain medication; but C said that she had cut back on his pain meds, because she thought the same thing. His pain felt worse, but it didn't help with his lethargy or anything else. The only thing that I can think of is that Mark was SO determined to go home, and he worked really hard to be able to go home; and once he got there, maybe he just gave up. He's happy to be home, and now he can just relax. 

After talking to C for a while, we checked on Mark again, and he was awake. He looked SO tired and pale. He couldn't keep his eyes open long enough to really talk to me. He did say he was glad to see me, like always, and when I asked how he was feeling, he said, "Great". He's afraid to tell anyone when he doesn't feel well because he thinks he'll have to go back to the hospital.

The doctor came and checked him out, basically confirming what we already knew. He wrote prescriptions for the pain meds that Mark needs, but that was all he could really do. We need to hear from Mark's oncologist to know where the cancer stands, but in reality, there isn't anything else to do except make Mark comfortable. He called to have a hospice nurse go out and evaluate Mark, to see if he's ready for hospice (the nurse will estimate how long he has to live, and if it's less than six months, then he would qualify for hospice). The nurse should be going tomorrow, I hope. We'll know more once we find out if he's ready for hospice.

In writing about all this, it seems so matter-of-fact, but I had a REALLY tough day. I cried the whole way to the group home, and the whole way home. I tried to run on the treadmill, but only made it a half-mile before crying again and giving up. I cried in the shower. I cried when Jerry got home, and I told him the whole story. The whole evening has felt like I've been in a fog. When Mark went home a couple of days ago, I felt some sort of hope that he'd have another year or two. I never expected to get this call so soon.

I don't think Mark knows that he doesn't have much time left. I could barely understand what he was saying today, but I did hear him say something about fishing with my dad. I'd hoped that he would be able to go fishing one last time.


Something that completely broke my heart today was when C and I were talking in Mark's room. We said how hard Mark worked to be able to go home; that he went to physical and occupational therapy every day and worked through the pain. And he did it! He was home. I thought Mark was sleeping while we were talking about this, but then he said, very weakly, with his eyes still closed, "See? I did something..."

He was really proud of himself for doing it. Mark has always enjoyed his chores and when people ask him for help with something, and I think it's because he likes feeling needed. It gives him a purpose. When he was in the nursing home, he couldn't wait to go home and do chores like sweeping the floors. When he said today that he "did something", I just felt so sad; I hope he realizes that he's done SO MUCH MORE than I could ever explain.

All of this makes me scared. I'm scared about what's happening with Mark. I'm scared about being a primary caretaker for him if it comes to hospice care at my parents' house. I'm scared he's going to be in pain. I'm scared to tell him that his cancer isn't gone.

I just found this pic of him with my sister's dogs from several years ago

I know this sounds totally selfish here, but I'm even scared of what all this is going to do to my weight. I skipped my run today, and I could probably count on one hand the number of times I've skipped a run for no "real" reason. I'm an emotional eater, so I'm scared that this is going to make me want to eat everything in sight.

I didn't want this to be such a downer of a post, but it's hard to think positively about any of it right now. I know a lot of you look forward to updates about Mark, so I wanted to fill you in on what's going on. Thanks for the prayers and positive thoughts you've sent his way!

60 comments:

  1. You didn't skip your run, honey! Even if it was ONLY a half mile, you "did something". :)

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  2. Katie,
    Your love and care for Mark has been so heart warming. I lost my Dad a year ago this month. He did not have cancer, but there were requirements that he had to meet so he could go home and he worked so hard to reach them. His body was tired and we weren't ready to see him go. If it is Mark's time, I pray that he goes very peacefully. You and your family have made these days so meaningful for him.

    On the weight /food side, unfortunately I gained about 10 pounds in the month after losing my Dad. I'm still struggling with the last couple. Don't beat yourself up over it. You know the signs and hopefully you'll do better than I did. My running really suffered - it's hard to run when you want to curl up in a ball and stay in bed. But it did get better.

    Love and prayers for Mark, and you and your family.

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  3. This is just really really hard! Be kind with yourself about shortened runs and overeating. Mark's cancer is really hard to face- it's easier to overeat than sit with the sadness, you know?

    I'm so sorry to hear this. He sounds like such a special man.

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  4. Katie I'm so sorry you are going through this but unfortunately death is a part of life and it truly does suck. Mark is so fortunate to have your family (your parents, brothers and sister included) that care for so much for him as well as the people at his group home. My Mom is a volunteer for hospice and she said most of the patients are of one mind set or another - they are in denial and fight it the whole time OR they already know before being told that their time is short and are ready for the end. You are in a very privileged position, one that I know you don't want, but you and your family get to be there with Mark as he transitions out of this life and will be surrounded by people that know and love him and for that, I'm sure he is grateful for. During this time you MUST take care of yourself - even if you don't feel up for a run, go for a walk but have your running gear on. You know Mark would not want you to stop running or gain any weight because of him. I work in a graduate school of social work so I know how important self care is - you and your family should take advantage of the downtime and do things that you enjoy and relieve the stress. Mark, you and your family will all be in my prayers.

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  5. I'm so sorry, Katie.

    My mom was under Hospice care at home for 2 1/2 months before she died of cancer. It was painful for me not only because she was dying, but also because of the way the cancer was slowly destroying her. It's hard to watch. It helped me to read about death and dying. In retrospect, there are things I wish I'd done better. I wish I'd talked to her more about the hard stuff: was she afraid of dying, etc.

    This is a long way of saying...it's going to be hard. Do the best you can. We'll be here if you need us.

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  6. Your family and Mark are in my prayers.

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  7. You are a sweet, sweet girl, Katie. My thoughts and prayers are with you and Mark and your family as you walk with Mark on this journey. Come here and tell us your struggles. There will be people here to help you through it all.

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  8. Oh Katie, I'm so sorry :( wish I had more words of comfort but my heart broke reading this post. I'm choking back tears because I'm at work.

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  9. I'm so sorry you, your family and Mark are going through this. I can guess how hard this is for you. I've struggled significantly since December. I had an unexpected and traumatic death in the family. It hit me hard. I'm still 'not over it'. Not that you ever really get over it, but it impacted my running as well and I have gained a few pounds. I'm still not back to running like normal and I'm not sure how long that will take, but for me that is more connected to the way in which my Aunt was killed (she was hit by a car while taking the dog on a walk). I'm not sure I can offer any words of wisdom or advice that are super helpful. I will say, give yourself the room and the space to feel what you need to feel. If my experience was typical, some things will get disorganized and/or fall to the side. Things won't be normal. All of that is OK. You have to let yourself go through it or the emotional eating will be more of problem. Anyway, I read your blog often and appreciate all you are putting out there. I'll be thinking of you and your family.

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  10. I'm so sorry! Continuing prayers for Mark, you and your family! Peace in the days ahead.

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  11. I'm so sorry. It's so very hard to face this. A lot of people would not say what you said. Thank you for being real. Your running is going to help you through. It's a stress and anxiety relief. Use it that way. Sending prayers for Mark and for your family during this time.

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  12. Mark sure has touched our lives through your stories. What a blessing to have such a special friend. Your family's love for him shines through. God bless.

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  13. Lots of love to you and to him, Katie.

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  14. Oh Katie I am so sorry to hear that Mark is declining. I don't think Mark worked so hard to get home to "give up" but rather to find his peace. He is in his home and when the time comes to move in with your parents he will have an additional home. I hope you and your family look into some of the grief counseling that Hospice provides. I have such admiration for all involved with Hospice, the can truly be angels on earth. Take care of yourself please, Mark would want you too. Remeber your Sole Mates are here if you need anything!

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  15. Katie, I'm so sorry. We're here for you. I cried as I read this and told my husband all about Mark (from your old posts). It's all so sad; I had started to believe he was going to get more time.

    But Mark's so lucky to have you and your dad. For someone in his condition without really any family and just in a group home, you've been a blessing to him. How would he have been able to keep his spirits up without you two? I honestly don't believe he would have had the courage to do all the work he did to get back to his group home, if he hadn't been able to count on your moral support.

    You're a blessing to Mark. Yes, you're weight is likely going to suffer for a while as you deal with all this. But you've done more for this man than anyone has. You visited him multiple times a week; you recruited hundreds of get well cards for him; you brought him shakes and coffees; you got him a heartfelt meaningful cake; and you organized a party for him at his group home for a bunch of strangers. I'm sure you've made that man so happy in these last few, very painful months. You're right to feel sad; but you should also feel so proud of yourself and your heart.

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  16. You're allowed to be angry about what's happening, and I hope you'll continue to post honestly about what you're going through and not hesitate to ask for help and support. I've read your blog for years but it's taken on a whole new meaning since you started posting about Mark. His story has affected me strongly. I'm so sorry to hear he's taken a turn.

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  17. Katie, I have been reading your blog for over a year now and I know that you are an incredibly strong person! Use your running and exercise to work through your fears and make them as meditative and cathartic as you can. Do not let food be your source of comfort, let it continue to nourish your strong mind and body. Life is like a marathon, not a sprint and there are always moments of discomfort, fear and pain in a race. Face this difficult time as the fearless woman that you've become and you will prove to yourself what you can accomplish, no matter what life brings you. Look forward to your runs as the gift you give yourself because you are a gift to Mrk, your family and all of your blogging fans :)

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  18. I'm so sorry. What a hard thing to go through. I'll keep you and Mark in my prayers.

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  19. I'm very sorry to hear this news about Mark. Don't be hard on yourself or feel selfish about thinking about how all this will affect you. As for running, I found running therapeutic during the times that my parents were dying. Often I ran and cried at the same time. Being a primary care giver is daunting, even with the help of hospice. There is nothing wrong in deciding that you do not have the proper knowledge and training to provide the care that Mark will need.

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  20. I'm really sorry to hear this news about Mark. I find it truly wonderful the way he has touched your life, and the way you and your family have touched his. What an amazing gift he has given you just by being himself. This is a tough time and you should cut yourself a little slack if some of your runs are shorter than planned--you can't just go on as if nothing is happening. This doesn't mean give up on it all, but just do what you can do and don't beat yourself up. It's very hard when you're going through a difficult time, but stay strong on your eating patterns. If hunger isn't the problem, then food isn't the solution. You are amazing and you will get through this.

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  21. I'm so sorry to hear this, Katie. I'll be keeping Mark, and you and your family in my prayers.

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  22. How horribly sad. I'm really sorry to hear this.

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  23. I'm sorry you are going thru this. I hope Mark is not in pain, and praying for you and your family. Take care of yourself.

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  24. Dearest Katie

    I'm sad beyond words....for Mark, you, your family .... everyone involved.

    He did work so hard to get back home - to his friends and pets.... his place of comfort, and he made it! Maybe that was his truer purpose ...

    Please, in the days to come... love yourself and be kind to yourself....
    You would never tolerate anyone being unkind to Mark or anyone else in a difficult situation.... please give yourself the same kindness.

    I'll keep Mark, you, your family and all of the hundreds of Mark's friends close to my heart and in my prayers in the days to come....know that we hundreds are only a key stroke away, let us know if we can ever do anything to help...

    XOXOXO
    Kimberly

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  25. Katie my heart is breaking, the tears keep coming......please understand a couple things...... one you made a difference in Marks life. A BIG difference. You and your parents. These last few months have been some good times for Mark. The cards and letters and gifts he was sent as a direct result of YOU lifted his spirits like nothing else right? He got shakes and specialty coffees and fast food and junk food on a regular basis. As a direct result of YOU. I'm sure he enjoyed those things more then any of us even realize. The party at his group home with his friends was something Mark could never have pulled off on his own and I can only imagine how proud he was to be able to provide that for his friends. (because if you) I know it made him so happy. Watching and caring for someone who has cancer is an awful place to be. But per usual you rose to the occasion beautifully. Don't stop now. And what I mean by that is YOU must not give up on yourself because you are so overcome with emotion for Mark. He's going to Die Katie Girl and there is not a thing you can do about it....except be there, hold his hand and tell him you love him. If you stop your journey for better health and a better life wouldn't that sort of be Marks fault? That's not fair to your memory of him right? The last thing you want is to look back and say "yeah when Mark got sick I just quit taking care of myself" You want your memories to be positive ones of all the things you did to make his last days happy ones. Katie you are amazing.....come out of this stronger not weaker OK?

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  26. I'm sorry to hear this, and I wish you and your family strenght through all of this.

    I read your blog regularly, but I usually never post, but I felt I really needed to comment today when I read this: "I skipped my run today, and I could probably count on one hand the number of times I've skipped a run for no "real" reason."

    Grief is a "real" reason.

    Further, I could be wrong, but this comment to me sounds like you may feel like you are 'failing' because you didn't run. If so, perhaps it could help, especially during this time, to cut yourself some slack. Maybe you could frame going running more as a reward for yourself, as a time for you alone, to clear your head instead?

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  27. I'm so sorry for the pain you and your family are going through right now.

    Remember that you are strong and self-aware. You know how to take care of yourself during your pain and grief. Don't beat yourself up over slip ups. You're going through one of the most difficult experiences you can have in life -- loss and grief. Be kind to yourself. You are surrounded by people who love you. Take strength from that.

    I hope you have the same experience my family had with hospice. They helped my dad at the end, and they were such a gift. They made him comfortable and content, and they helped all of us deal with the end of his life. They were able to arrange for all the equipment and support that my dad needed, and they also had religious support, therapists, and social workers to help all of us. You all have my prayers.

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  28. Katie,

    I'm so sorry. It's so strange how Mark took such a sudden turn. I'm going to think positive and believe that he just needs some rest and will be "back" doing his chores soon. Even though Mark is a happy person, I'm sure this has all been very stressful for him. He may have just reached a point where his body needs the rest for now. I hope that is the case!

    I agree that you had a "real" reason to skip your run. I also think that you did NOT fail because you ran. You did what you needed to do today. Let's say you had decided to run and not go to Mark's home to be there when the Dr came. Would you have felt guilty? Sometimes life happens and you have to roll with it. Being there for Mark was important to you and to him.

    As you continue down this road maybe you can use running for stress relief? This isn't going to be easy. It might be good to get out, breathe some fresh air and go for a run. Do it for Mark. Do it because he can't. Go out and enjoy the day after your visits with him and take joy in something as simple as running.

    {hugs} to you and your family during this time. Thank you for being so honest on your blog and I hope the next post I read has some better news regarding Mark.

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  29. So sorry to hear of Mark's setback. Maybe that's all it is' a setback. Or maybe he's happy to be in his home and to finish his days where he's most comforted, be it his home or your parents'. I'll be praying.

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  30. Oh Katie, I'm so sorry to hear about Mark and the pain your family is going through. I'm crying here just thinking about you and your family. I wish there was more I could say or do, but unfortunately I can't. Just remember Mark will still be one amazing man, wether it be here or in Heaven. My thoughts are with you!

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  31. Katie, I'm thinking about and praying for your family and Mark and his loved ones during this difficult time.

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  32. I just saw this - I will be thinking and praying for you and your family. I know these times can be difficult but have faith.

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  33. Katie, sitting here at work tearing up but praying for the peace of God for you, your family and especially Mark. Psalm 46:1 God is our refuge and strength,
    A very present help in trouble. Know that you are not alone..

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  34. I usually don't comment, but I wanted to say something today. Hospice is a wonderful organization that's sole purpose is to make the end comfortable for the patient and a bit easier for the care giver. They not only offer pain management support but emotional support as well. My dad died three years ago of a terribly painful, fast progressing cancer. While the end was an emotional roller coaster for our family, Hospice helped us feel like we were not alone.

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  35. I'm sorry to hear Mark has had a downturn. At least he is where he wants to be now and making him comfortable is the most important thing.

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  36. So many prayers are being sent to all of you.
    Mark is so loved and the fact that you've shared his story with so many people is incredible.

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  37. I'm so sorry that things aren't going better. He seems to have reached his goal, he worked hard to get home and now maybe he just wants the peace. It's so different for each cancer patient but all any of us can do is love them and respect the way they choose to spend the rest of their time here. It's not selfish at all to think of how it could affect your own journey but remember that stress eating isn't going to change the situation and turn to exercise to help do something mindless to have that small distraction for yourself each day. He would want you to put your own health first especially with his taking a turn. He'd want that for you. I'm here if you need to talk! ((HUGS))

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  38. I am so sorry you are going through this. I agree with all the kind words that everyone has written so far - you were exactly where you needed to be, at the group home, waiting for the doctor, with Mark and with C. And now you need to let go of the guilt that you didn't do everything you planned to do in the day. You just had your emotional legs knocked out from beneath you! Take time to breathe! Sit quietly and collect your thoughts. Cry as much as you need to! Putting unnecessary pressure on yourself is definitely going to set yourself up for failure!

    Getting Mark into Hospice care is going to be the BEST thing that can happen. I volunteer with a local Hospice home every weekend and you will be amazed at the loving care he will receive. They will mange his pain and make it possible for him to live the rest of his life with comfort and dignity. I promise - you will be so glad to see those Hospice folks come in!

    Please know your online community is thinking of you, pulling for you and praying for you and your family during this difficult time. We knew it would be coming, but hoped it wouldn't be for a long, long time.

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  39. It says a lot about you katie that Mark's situation is affecting you so strongly. I hope you can be strong for him, as you have been right along--he will need you now more than ever. I have my own challenges in that area as my own husband faces a battle with incurable cancer. It's the toughest thing I have ever had to face, and I'm trying to be strong, but it's not easy. I know it will be easier if I maintain my weight loss, but stress makes me eat too. I know how important running is to you, so I hope you resume today and that will make you feel better and I know it will strengthen your will. Now it's time for me to practice what I preach....and get out there and take a nice long walk! GO US!!

    I hope you can find the Women's World Magazine. The pictures are lovely and the story was great. Once again, you inspire me, as well as thousands of other people. Hang in there Katie, we care about you AND Mark!

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  40. So sorry!! Definitely keeping him in my prayers, and your family as well. Let us know the results when you hear.

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  41. I have read your blog for years and have never made comment. I just could not help but feel for you today though. My grandmother was diagnosed with cancer and I have never experienced it before that. It is just an emotional ride up and down just about everyday. I think the hardest part was the her having a great day and then the next day she was barely there and then the next week she was great and going home, was home for a day and got really sick again. It was SUCH an emotional time seeing this happen. When it came to the last few days it was kind of hard to believe because we though it was just another "bad day" and tomorrow she would be good again. I am really sorry that you have to go through this but Mark is soooo lucky to have you and his family. Take it easy and remember, he would not want you to back track just because of this. My prayers are with mark and your family.

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  42. I will be praying for Mark and for you and your family. He is very blessed to have people who love him and want only the best for him. And you are blessed to have learned such valuable lessons from him. Lots of love to you this weekend!

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  43. You are not selfish at all, it's a realistic concern. My Mom has cancer and is going to require extensive care. And aside from all the worries about her health and mental well being we do HAVE to worry about ourselves. Our lives and issues dont stop, and its a legit concern to worry how to handle it all. The Care team even made a point to say that we needed to be sure to take care of ourselves too.

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  44. I cried reading this. Even only Mark knew how much he means to all of us - even those who never met him but have only heard about his story. My thoughts and prayers are with ALL of you.

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  45. Katie, I am so sorry for this difficult time that you are going through. You have touched not only Mark's life, but the lives of thousands of people through sharing his story on your blog. Treasure the good memories you have and are creating with him. What an incredible lesson you are teaching your boys by your example of all you have done. I think most of your readers, myself included, can identify with emotional eating. I think it is worse if you stay cooped up in the house by yourself. Try to get out, even for a walk if you don't feel like running. Find a running/walking buddy or group. Go for coffee with your mom or a friend. Focus on your upcoming Ragnar. Dedicate that run to Mark (or his memory, if that turns out to be the case). Have a virtual 5k dedicated to Mark. I don't know how you would go about setting it up, but I'm sure people would contribute a (optional) donation to something that would mean a lot to Mark, be it cancer research or another cause that represents his life...the group home or something else. Hang in there and know that you are not going through this alone. ((((((BIG HUGS))))))

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  46. So sorry for the news...that has to be so hard. I will get another postcard in the mail to him today... --Mishka

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  47. Katie,

    I am tearing up, because I think all of the people who read this blog feel as if Mark has become a part of our lives. I knew the day would come when you would have to say that he was declining, but dreaded it too. The work he has done has kept him going, and I think he does feel like he can relax now that he is in a place where he feels safe and comfortable. It's really all anyone could ask for, because I wouldn't want him to spend his last moments in the hospital, and it comforts me knowing that he is somewhere that he knows he can find love. I was caretaking for my mother when she was sick, and I know how tough it can be, so let us know if there is anything we can do. I know that he feels an amazing love for you, and even if he doesn't understand everything that is going on, he knows that you and your family care. Thank you for letting us be a part of his journey and introducing us to someone who is so full of life and positivity. Just remember Mark when you are thinking of binging or not wanting to work out. He would want you to live your life, and you have to be healthy for the boys. You and Mark are in my prayers!

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  48. We are praying so hard for him and for you. Caring for someone can be exhausting.

    Today was a hard day. ONE day. You know that one day of healthy eating doesn't make you skinny, just like one day of crappy eating doesn't make you fat. You are dealing with more than the usual stress. Don't be hard on yourself, because that will make it seem worse. You are okay. It will be okay.

    Thinking of you all.

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  49. So sorry to hear Mark is not doing well. He is very lucky to have you and your family. He sounds like quite a guy. Keeping you in my thoughts.

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  50. Katie, you are right to feel any and all feelings you have about this. It is a huge blow to your entire family. Mark is someone who is and will always be a VERY important part of your life. Kick scream cry and get as mad as you want. Then you have to pick yourself up and carry on. You are stronger than food and you are braver than calories. Give yourself some credit. you have come SO far and though you may slip, you always get back on track and pull yourself back to where you know you need to be to feel happy and content with yourself. You've got this. You can do it! You WILL do it! I believe in you...we ALL do! Remember that when you are having trouble believing in yourself. You will never let us down, but we are all here for you and have your back!!! Big hugs, Katie!!

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  51. I'm so sorry to hear this. I truly believe that Mark's adult life was better because of your family. The things you have done for him are things a family does. You are in my thoughts and prayers.

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  52. Katie, so sorry that this is happening. Sending you and Mark good energy. We are all here for you. BTW, picked up Woman's Day tonight with you in it, looking forward to reading it.

    Dede

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  53. PS....Oops! Meant Woman's WORLD!

    Dede

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  54. Oh, Katie. I'm so sorry to hear that. I'll definitely be praying for Mark and you.

    I think it's good you're being honest about how scared you are. You are being brave enough to admit this could derail you; that takes a lot of strength. I think the fact that you recognize this as an unavoidable emotional trial says a lot about how far you've come. Have you thought about sharing this in your WW meetings? Regardless your readers support you and are cheering for you.

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  55. uh-oh - your lack of a post today worries me but encourages me to encourage you on the difficult journey you and your family are traveling. Love to you all.

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  57. I hope everything is okay Katie. I fear the worst right now. You are in my prayers, as well as your family and of course Mark. May peace be with you Katie. Hugs from Texas.

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  58. I hope everything is ok. Prayers you all!

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I'd love to hear from you! I read all of my comments, and if you have a question, I do my best to respond; sometimes, however, I get busy and forget to go back to reply, so if it's important, just email me! :)