Anniversary

musiclover
musiclover Member Posts: 242
edited March 2014 in Colorectal Cancer #1
I haven't posted for a year and I don't recognize hardly any of the names now. On Feb. 13th it will be a year since my friend passed away. Mark was my ex and I came back into his life when he was diagnosed with rectal cancer in August, 2005. I became his fulltime caregiver, his cook, his shoulder to cry on, his protector (from the doctors), his researcher, his driver, his confidant, etc. I was happy to do this, it was a pleasure to spend that quality time with him.

After his passing I had a meltdown. The whole time he was going through treatment I kept it together, stayed strong and focused. This is not like me. My usual response to a stressful situation is freaking out and worrying. Somewhere I found the strength, and wisdom, to remain calm.

I've been crying for the past twelve months. I'm still going through the anger phase of my grieving. I'm angry at the doctors - their blunders, their misformation, their absence. I'm angry at myself for not being able to cure him, for letting that Kushi chef bully him and feed him food he hated, for taking him to the chiropractor when his back pain was out of control thinking his back had gone out when it was due to tumors growing and pressing on his nerves (thanks to the doctors for not telling me this). I'm angry at his "friends" who disappeared at his most needy time. I'm angry at God for letting this happen in the first place.

Mark was the most kind and gentle human I have ever met. He would do anything to help someone - a friend, a stranger. He never asked or expected anything in return. He was a wonderful artist, poet, songwriter, musician. I just wonder when this ache from missing him is going to stop.

Perhaps some of you remember my many (daily) posts. Thank you to those that responded - you don't know what comfort you provided for me. I've continued to add to the sites I built in his honor. Please go visit to see photos and hear music from this beautiful person. Thank you for listening.

http://www.myspace.com/markfrere
http://www.myspace.com/mfrere

Comments

  • chynabear
    chynabear Member Posts: 481 Member
    It hardly seems possible that a year could have passed already. We've all wondered how you were doing. It was so very evident in your posts how much Mark meant to you. You are a very special person for all you have done.

    I remember wishing and praying so strongly for you and Mark.

    You continue to be in my prayers and I pray that you may find some peace.

    When my journey with cancer started, I was turned away by many doctors who said it was virtually impossible for me to have cancer. I trusted them to know. Years later, I still had trouble finding a doctor to take me seriously. Even my gastro doc admitted to me that he didn't believe that I needed a colonoscopy when I first arrived in his office. I think it humbled him when my diagnoses came in.

    We all have plenty to be angry for. But, at some point, the anger is only doing harm to ourselves. Please, make sure you are taking care of yourself.

    I remember visiting the myspace page shortly after learning he passed. You did an amazing job.

    Many HUGS to you, sweet woman

    Tricia
  • valeriec
    valeriec Member Posts: 348 Member
    Musiclover,
    This past year I have thought of you many times, and have wondered how you are doing. Mark was a very blessed man to have you in his life, and it sounds like you were very blessed to have him in yours. That being said, I know how hard this is. I lost my mom 6 months ago to colon cancer and I have lived in a constant state of guilt ever since. Guilt that I could not heal her. Guilt that I made her eat and drink things that she did not like. Guilt that I could not find the "right" doctor to take care of her. Guilt that I drug her to every doctor in the state of Colorado. Guilt that our God let her down when she needed Him most.(I feel guilty about even saying that) And guilt that at times I became frustrated because I just did not know what to do. Wow, it is so hard to even say those things. I have not come to the anger part yet, but I'm sure that part is coming.
    Being a fulltime caregiver is so overwhelming, but like you said, it can also be a very special time. As caregivers we are very strong and focused, but inside of us there is a really scared person. And I can only imagine how my mom must have felt.(I feel guilty over that too)So having a complete meltdown when our loved one passes away is probably normal. At least that is what I am telling myself.
    I guess what I'm trying to tell you(but I might be rambling) is that I feel your pain-I'm right there with you. Our loved ones are OK. We just have to find a way to live with out them. I am going to grief counseling that is put on by Hospice. It really does help to hear what others have to say.
    I'll be keeping you in my prayers that you can find some peace.
    Val
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    You did a great job caring for Mark. what it comes down to is that this disease sucks. Try to remember the good times you shared with Mark. You were a great caregiver and her was lucky to have you. Mark is in a better place. May you gain the strength to carry on.

    Maureen
  • dash4
    dash4 Member Posts: 303 Member
    I am one of the "old" posts and you have never been forgotten. I keep you and Mark in my prayers. I feel like someone is reading my thoughts when I read your post and your replys. As caregivers, I think we live in this "parallel universe" of caring 24-7 for our loved ones and I just drop out of our universe to go to work and do all the required logistics of living. With all we do, it never seems to be enough. This has been my world for 3 and 1/2 years and I do worry if I am making all the right decisions or not. I am the type of person that if I see a problem - I fix it. That has been the hardest lesson for me with cancer is that just "wanting" to find the cure is not enough to make it so. But I do believe strongly that our loved ones that we are caring for and have cared for were and are in a better place because of our care.
    I believe Mark is now praying for you to find peace and wants you to know that hs is sooo grateful for all your love and caring that supported him and gave him strength when he needed it. I read so many posts on here of people with cancer being left alone and here you are coming back for Mark. What a true blessing you are for him. Please accept that we are all human and can only do what is humanly possible. Think about where Mark would have been without you. I never took the time to listen to his music you have posted on myspace--what a tribute to his life! I will find the time to do that. Even the title "markfree" says so much! I do believe that Mark is "free" now and in a better place than we can even imagine.
    Keeping you in my thoughts and prayers.
    Mary Kay
  • betina61
    betina61 Member Posts: 642 Member
    I remember very well your posts,I felt so sad when Mark paased away,I allways admired your devotion to him. I hope that you find peace soon.
  • mindy10
    mindy10 Member Posts: 182 Member
    I can't believe it has already been a year. Its seems like just yesterday you where posting. I too feel the pain and anger and guilt that you do for my dad. He didnt have the best Dr's where he lived and I wish I took him to where I lived and brought him to the best hospital around. I feel they could of done more for him. I wish I was with him more. It was hard seeing him the way he was so at the end I only visited twice a week but now I wish I went everyday. I couldnt even look into his eyes the last 2 months of his life because it didnt even look like him and he looked so scared so when I would talk to him I would look at his mouth. I hope he never noticed that. Your not the only one that feels the pain, the guilt and madness. I think in time it will subside. You will always miss him but the other feelings I think will eventually go away. Mindy
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    Hi Kathryn -

    We corresponded often and I was so sorry to hear about Mark losing the battle. You were the most incredible friend for him and sad as the outcome was, he was so lucky to have you advocating for him and caring for him.

    I'm so sorry that none of these "professionals" were able to help Mark (and I know there were stupid insurance type issues also.)

    Please don't blame yourself for allowing the Kushi chef to bully him or anything else like that. You were trying to help at a time when the medical profession / insurance infrastructure was not much helping. You were a great support to Mark - you might blame the Kushi chef or the chiropractor, but PLEASE don't blame yourself. You were a model "caregiver" and I am sorry (although I understand) you are still crying over Mark.

    Take care,
    Betsy
  • jams67
    jams67 Member Posts: 925 Member
    Its amazing that the living always feels guilty and angry when a loved one passes away. My mother tells me time heals and at 88, she has a great deal of wisdom. I remember Mark very well, and he will live on in the memories of others. I hope and pray that your spirit will heal soon.
    Jo Ann
  • musiclover
    musiclover Member Posts: 242
    chynabear said:

    It hardly seems possible that a year could have passed already. We've all wondered how you were doing. It was so very evident in your posts how much Mark meant to you. You are a very special person for all you have done.

    I remember wishing and praying so strongly for you and Mark.

    You continue to be in my prayers and I pray that you may find some peace.

    When my journey with cancer started, I was turned away by many doctors who said it was virtually impossible for me to have cancer. I trusted them to know. Years later, I still had trouble finding a doctor to take me seriously. Even my gastro doc admitted to me that he didn't believe that I needed a colonoscopy when I first arrived in his office. I think it humbled him when my diagnoses came in.

    We all have plenty to be angry for. But, at some point, the anger is only doing harm to ourselves. Please, make sure you are taking care of yourself.

    I remember visiting the myspace page shortly after learning he passed. You did an amazing job.

    Many HUGS to you, sweet woman

    Tricia

    Tricia, you are so right. The anger only prolongs the pain. This experience has altered me in so many ways. Before Mark got sick I was about to go gung ho into an intensive Nutrition degree but seeing how Mark was a vegetarian, non-smoker, non-drinker, excercised and did everything right, I'm convinced that his depression and loneliness created his cancer. I want to get over the bitterness. That is a cancer creator in itself. Thanks soo much for visiting his site. I so appreciate the kind words.
  • musiclover
    musiclover Member Posts: 242
    valeriec said:

    Musiclover,
    This past year I have thought of you many times, and have wondered how you are doing. Mark was a very blessed man to have you in his life, and it sounds like you were very blessed to have him in yours. That being said, I know how hard this is. I lost my mom 6 months ago to colon cancer and I have lived in a constant state of guilt ever since. Guilt that I could not heal her. Guilt that I made her eat and drink things that she did not like. Guilt that I could not find the "right" doctor to take care of her. Guilt that I drug her to every doctor in the state of Colorado. Guilt that our God let her down when she needed Him most.(I feel guilty about even saying that) And guilt that at times I became frustrated because I just did not know what to do. Wow, it is so hard to even say those things. I have not come to the anger part yet, but I'm sure that part is coming.
    Being a fulltime caregiver is so overwhelming, but like you said, it can also be a very special time. As caregivers we are very strong and focused, but inside of us there is a really scared person. And I can only imagine how my mom must have felt.(I feel guilty over that too)So having a complete meltdown when our loved one passes away is probably normal. At least that is what I am telling myself.
    I guess what I'm trying to tell you(but I might be rambling) is that I feel your pain-I'm right there with you. Our loved ones are OK. We just have to find a way to live with out them. I am going to grief counseling that is put on by Hospice. It really does help to hear what others have to say.
    I'll be keeping you in my prayers that you can find some peace.
    Val

    Valerie, I know all about the guilt. The hardest thing will be to forgive myself for what I didn't do. Thanks for your thoughtful words. Everyone who experiences this is on their own journey and grieves in their own way. I don't want Mark to fret that I'm aching so badly over this so I'm determined to put my grief, anger and guilt aside and focus on doing something great in his honor. I have a plan to build a music school in the future in his name so that is something good to look forward to.

    Grief counseling is a good idea. I went to someone at Kaiser immediately after his passing and asked for drugs so I could just sleep all day. It didn't really help. I'd just wake up crying and in a daze. I talked my brains out about the guilt and regrets and it did help to purge.

    Thanks again for taking the time to post.
    Kathryn
  • musiclover
    musiclover Member Posts: 242
    Moesimo said:

    You did a great job caring for Mark. what it comes down to is that this disease sucks. Try to remember the good times you shared with Mark. You were a great caregiver and her was lucky to have you. Mark is in a better place. May you gain the strength to carry on.

    Maureen

    Thanks Maureen. Yes, it does truly suck both to have the cancer and to see someone experience it. There is a beautiful thing that came out of this. We were able to spend a lot of time together and resolve many things. I'm grateful for that. Thanks for your words.
    Kathryn
  • musiclover
    musiclover Member Posts: 242
    dash4 said:

    I am one of the "old" posts and you have never been forgotten. I keep you and Mark in my prayers. I feel like someone is reading my thoughts when I read your post and your replys. As caregivers, I think we live in this "parallel universe" of caring 24-7 for our loved ones and I just drop out of our universe to go to work and do all the required logistics of living. With all we do, it never seems to be enough. This has been my world for 3 and 1/2 years and I do worry if I am making all the right decisions or not. I am the type of person that if I see a problem - I fix it. That has been the hardest lesson for me with cancer is that just "wanting" to find the cure is not enough to make it so. But I do believe strongly that our loved ones that we are caring for and have cared for were and are in a better place because of our care.
    I believe Mark is now praying for you to find peace and wants you to know that hs is sooo grateful for all your love and caring that supported him and gave him strength when he needed it. I read so many posts on here of people with cancer being left alone and here you are coming back for Mark. What a true blessing you are for him. Please accept that we are all human and can only do what is humanly possible. Think about where Mark would have been without you. I never took the time to listen to his music you have posted on myspace--what a tribute to his life! I will find the time to do that. Even the title "markfree" says so much! I do believe that Mark is "free" now and in a better place than we can even imagine.
    Keeping you in my thoughts and prayers.
    Mary Kay

    Mary Kay, I remember that helpless feeling - that it was out of my control and no matter how hard I tried I couldn't make him better. I found strength I didn't know I had taking care of Mark and now I'm convinced I can do anything in this life that is put before me EXCEPT cure cancer (and get a record deal).

    Mark would have been alone if I weren't in town. That is a fact and I am soo grateful that I was able to be there for him. I don't pat myself on the back about doing what I did. It was a priveledge. HE was sick and had to deal with that so I don't think I'm so special but thank you for the nice comments.

    Mark's last name was actually "Frere" which means brother in French. I can only hope he is free and at peace. If I knew that for sure this angst would be gone.
    Kathryn
  • musiclover
    musiclover Member Posts: 242
    betina61 said:

    I remember very well your posts,I felt so sad when Mark paased away,I allways admired your devotion to him. I hope that you find peace soon.

    Thanks. I'll always be grateful that I knew this amazing man. Having had a connection like that only makes you miss them more.
  • musiclover
    musiclover Member Posts: 242
    mindy10 said:

    I can't believe it has already been a year. Its seems like just yesterday you where posting. I too feel the pain and anger and guilt that you do for my dad. He didnt have the best Dr's where he lived and I wish I took him to where I lived and brought him to the best hospital around. I feel they could of done more for him. I wish I was with him more. It was hard seeing him the way he was so at the end I only visited twice a week but now I wish I went everyday. I couldnt even look into his eyes the last 2 months of his life because it didnt even look like him and he looked so scared so when I would talk to him I would look at his mouth. I hope he never noticed that. Your not the only one that feels the pain, the guilt and madness. I think in time it will subside. You will always miss him but the other feelings I think will eventually go away. Mindy

    Mindy, maybe this will put you at ease. I was taking Mark daily to the County hospital here in Los Angeles. Across the street was the Rolls Royce of Cancer hospitals - Norris. It was odd to drive up and see this fancy building next to the decrepit County monstrosity. Though one was gigantically more expensive and much cleaner, they did precisely the same treatments. I called MD Anderson a few times hoping to take him there and was reassured that the treatment he was getting was what would be done there and there was nothing more that they could do. That eased my mind a bit. Plus moving Mark across the country and taking him away from his home, his friends, his network, his job that he did until he couldn't manage - that would have been much too traumatic. That dumb Kushi chef wanted Mark to move because he didn't have a kitchen to cook the impossible foods she wanted him to eat. Moving would have killed him.

    Gosh I feel bad about your guilt and sooo understand it. I also felt the pain of seeing Mark so weak and helpless. I want to scream when I think of the fear he must have felt, fear I couldn't make go away. Thank you so much for sharing.
    Kathryn
  • musiclover
    musiclover Member Posts: 242

    Hi Kathryn -

    We corresponded often and I was so sorry to hear about Mark losing the battle. You were the most incredible friend for him and sad as the outcome was, he was so lucky to have you advocating for him and caring for him.

    I'm so sorry that none of these "professionals" were able to help Mark (and I know there were stupid insurance type issues also.)

    Please don't blame yourself for allowing the Kushi chef to bully him or anything else like that. You were trying to help at a time when the medical profession / insurance infrastructure was not much helping. You were a great support to Mark - you might blame the Kushi chef or the chiropractor, but PLEASE don't blame yourself. You were a model "caregiver" and I am sorry (although I understand) you are still crying over Mark.

    Take care,
    Betsy

    Betsy, you gave me so much hope. Mark was on the same treatment you were. The cancer was just too advanced to help. Thank you soo much for being there for me.

    Shortly after Mark passed I wrote the most satisfying angry letter to the Kushi chef. She had emailed asking for an "update." I let her have it. She was so cocky, bossy and condescending to Mark. Having worked with many celebrities she was really full of herself. I told her the Kushi regimen needs a lot more love and compassion and a lot less of the drill sergent mentality. I never heard from her again. I hope she took that advice to heart.

    Thanks for your kind words. I will try not to beat myself up. I just miss him so damn much! He showed me bravery I've never witnessed, wrote and played his bass until he was too weak to hold it up. He was a true artist. He was also the only one who could console me which is why this is so hard to get through. He's not here to comfort me. Thanks again.
    Kathryn
  • musiclover
    musiclover Member Posts: 242
    jams67 said:

    Its amazing that the living always feels guilty and angry when a loved one passes away. My mother tells me time heals and at 88, she has a great deal of wisdom. I remember Mark very well, and he will live on in the memories of others. I hope and pray that your spirit will heal soon.
    Jo Ann

    Jo Ann, I am looking forward to the day when I don't feel that dull ache. I marvel at people that are 80 plus years old. You know they've had some serious pains along the way. My grandmother lived to be 95 and was very positive with a great sense of humor. I don't feel like I've inherited that! One thing I know, I'll never hurt this bad again and I did survive it. I have been writing some amazing songs that I never would have been able to unless I experienced these past few months proving that out of pain comes greatness. Thanks for this post.
  • pink05
    pink05 Member Posts: 550
    Musiclover,

    I can't believe it's been a year already. I am so sorry that you have had to go through this pain. I know how much you cared for Mark. I remember all of your posts. He was so lucky to have you in his life. I'm sure he appreciated everything you did for him. I think it is sometimes more difficult for the caregivers than it is for the patient. I know it is so hard not to feel guilt. To this day, I still feel guilty about not getting my dad in for a colonoscopy years before his cancer was discovered. The signs were there and I chose to ignore them. Eventually, the guilt passes, but it does take time. Keeping you in my prayers.

    Take care of yourself,

    -Lee-
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    Kathryn: You have been missed. I remember seeing a post from someone a few weeks ago asking about you. I also cannot believe a year has gone by. All I can tell you is how lucky Mark was to have someone like you by his side. I know that I could not be fighting this fight without the wonderful people that surround me every day, and you were such a great friend and never gave up hope. I know that would have given Mark so much strength. Give yourself a break, and forgive, because one thing I know for a fact now is that everything happens for a reason, even if it is not clear at first. You were a wonderful friend, and you now know you have strength you never knew you had before, and that was Mark's gift to you. Monica
  • stage4mom
    stage4mom Member Posts: 22 Member
    Kathryn, I think of you often and am so glad to see a post from you. Like others, I am shocked to find that almost an entire year has passed since Mark's death.

    You are one of the most determined, strong, and focused people I have ever known, and no one could have done a better job as an advocator, protector, supporter, care-giver (and more) as you were for Mark. Your leave-no-stone-unturned approach ascertained that everything possible was done to help Mark, and he was fortunate to have you by his side every step of the way, and holding his hand at the very end.

    Mark is alive and well in both his music and in yours. Take care, and I'm so glad to hear from you.

    Jane
  • jerseysue
    jerseysue Member Posts: 624 Member
    I remember your posts well. I always that you were caring and always trying your best to help Mark. You always asked questions and just wanted the best for him. My thoughts and prayers will be with you so that you may find peace in your life.