Thursday, November 1, 2007

Torn

It has been nine months since the horrendous disease invaded Mike’s brain. Because of the way the disease attached itself to Mike’s brain lining (believe it or not, that’s way worse than having tumors on the brain itself, which Mike also has), Mike’s prognosis was six to eight weeks. Six to eight weeks. Yet, nine months later, Mike is still here. No, the fact that Mike is still here is by no means a miracle. It is by no stretch of imagination a sign of treatments having worked. And it certainly does not mean that Mike is beating this disease or is going to get better; he is not. Mike is here today only and only because he has been fighting tooth and nail to hang on. For three years, Mike waged a heroic battle against the cancer. For the last painful couple of months, he has waged a war against death. And even tonight, as I look at his frail body, watch him wince in pain with each slight movement, and listen to him yell nonsense about climbing a tree with dollar bills and a car on his back, I still see no signs of surrender. That will to fight, refusal to give-up, and urge to live encapsulates Mike.

The last nine months have been long, incredibly difficult, emotionally and physically draining, and downright excruciating. For Mike, for me, and for both our families. As I sit in bed next to Mike tonight watching him sleep, I feel at a crossroads with my emotions. The selfish part of me wants Mike here, for just one more day, one more week, one more month. Just a bit longer so I can lay next to him and hear him breathe, hold his hand while we sleep, kiss my favorite part of his forehead, or hear him call my name (just so he can ask for something and decide he doesn’t want it by the time I bring it). He is not ready to go, and I am not ready to let him go. Yet the rational part of me knows better. He is suffering. He is not himself. He is alive but not living.
I want his pain to end. I want him to be free. And so I feel torn. Torn about what I should want, or what to hope and pray for (not that God is listening anyway). Torn about whether I should tell Mike it is ok for him to stop fighting, or beg him to hang on just a little longer. This internal struggle eats at me daily. I wish there were some easy answers, or a manual to deal with this crap.

Meanwhile, Mike’s mental state has deteriorated even more over the last week or so. He is very feisty (a la “angry drunk Mike”) and says the craziest things. He has developed a passion for using expletives, and most of what he says does not make sense at all were it not for the curse words attached to it. If anyone knows anything about the following let me know: “monkey and Tony in white wagon,” “Mr. W. going down to Mississippi,” “dollar bills for kid with backpack,” and “broken guy swimming in shark tank.” Despite his utter confusion and incoherence most of the time, Mike still manages to make me laugh daily. Making people laugh was always Mike’s specialty, his trademark. He is still good at it. He is still funny and charming, even in this state. Unfortunately, the funny things he says are all x-rated, and I don’t want to make anyone turn red, so I will refrain from sharing.

Thank you all for your support, friendship, and love. If I don’t email back or call, it is not because I don’t appreciate your thoughts or phone calls; I do. It is just that I am overwhelmed and tired. And plus, we all know that I also have a lazy side. To those of you who have been feeding our families, visiting to make us laugh, and just listening to me cry non-stop, know that I am eternally grateful. I love you all!

Please continue praying and sending Mike positive thoughts.

P.S. Over the last few months, I have realized that I am an awful blogger. It takes me weeks to do an update, and compared to other bloggers I know, I just suck! There are days when I get the urge to write, but then get busy with Mike, work, visitors, and everything else that goes on, and end up not having even with one free minute to write one sentence. And then there are days that even a gun to my head will not produce a meaningful entry. I will try to be better, but I have also resigned myself to the fact that I just can’t be good at everything!

34 comments:

Carver said...

Dear Liz,

I think you are an amazing person. I think your blog and MPIP posts reveal such a caring, solid, thinking persona and are a great expression of what you are going through. How you can do it at all is beyond me and you shouldn't think twice about how often you blog, post, email, etc. Do it when you feel like it and don't when you don't. No one could expect you to do even do as much as you are doing much less more.

I think what you are dealing with in terms of whether you want Mike's pain to be over or to have just another day is a very hard one. Especially for someone at your age. I have actually told a parent to let go, right after an old family friend was sitting with him and telling him to hold on. There was no way he would have survived and at that point, I felt like as strong as he was and as many times as he'd made a come back, he needed someone to say, it's ok to let go. I did and he died within an hour. I don't think that happened because of me or any power I had. It felt right at the time.

I also think it's harder with a younger person. Even with my mother who was much younger than my father when she died, I couldn't tell her to let go. It is so awful for you to be facing all of this at your age. I personally don't think you can do anything wrong. I think you have to give yourself permission to feel anything you feel. That's the hardest. You and Mike are both very much in my heart and thoughts.

As ever, Carver

christine said...

My darling Lizzie,
I know we have never met but I refer to you as Lizzie when I pray for you and speak of you all the time so I hope you don't mind. I have not stopped praying for you and Mike and will continue to do so!!! Please know that I am a phone call away (570)977-9757 ANYTIME!! just ask Tammy I am usually up late nights scrapbooking.
Lizzie you are an awesome and amazing woman who has so much on her plate. Even though you think GOD may not be listening he is. If you need someone there to hold your hand and wipe your tears I will come and sit with you I am not that far from you I will do that for you I can be there today I can be there tomorrow and have no plans for a while don't be afraid to ask.
Know that we are ALL here for you!!
Much love,
Christine Uporsky

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Anonymous said...

Liz,
I've only posted once before, but I check your blog daily---always wishing for more Happy Tears and Loving Life entries. This latest makes me want to kick and scream, as infantile as that sounds.
Cautiously optimistic, brutally honest, temperedly humorous—your blogs are a window into the evil world of cancer, but conversely, they are also a window into the beautiful spirit of Mike and the love you have for him. I am acutely aware that the difficulty in reading these entries pales infinitely in comparison to the difficulty in writing them. But thank you. And by reading the plethora of anonymous (and not so anonymous) posts daily, I can see there are many thank you’s. Sharing this fight can’t be easy, but whether to seek comfort, vent frustrations, or simply keep loved ones and friends informed, I am (we are) appreciative to have this forum to express support, compassion, and as of late, some very funny anecdotes about Mike that may otherwise not be heard (and some that should be forever repeated they are so hilarious!)

Liz, you have an entitlement to feel however it is you want or need to feel. Selfish, angry, sad. You’re human….amazing and selfless with Mike throughout, but human none the less….give yourself permission to lose your mind now and again.

Holding on, letting go...neither emotion could ever be wrong when there is such selfless intentions behind them.

When my mother died, Steve was at your house one night when I called him--- you got on the phone to ask if I was ok….and if I needed anything, even though we didn’t know each other very well. I will never forget that. I know you have a wonderful support system at home with family and close friends, but I’m picking up the proverbial phone to tell you, if you need anything…please don’t hesitate to ask. I (and most certainly, we) would be there in a flash…

We fly in tomorrow for Jeff and Nancy’s wedding….and are anxious to visit with you and Mike.

Thinking of you both always,
Much love, Mel

Anonymous said...

Liz,

Your posts are always a welcome sight and in their absence it allows people to wish for those peaceful moments, pray for the rough times and keep you at the front of their minds. You do whatever meets your needs.

Keep asking God to show you that he is caring for Mike. Shout that it does not seem so. Ask for him to show you that care and I think you will be surprised at how He shows up. I have been there. Cried out that He was not caring for my dear friend and He did show up. Not in her healing, but in other amazing ways.

Across the thousands of miles on a sunny day in Seattle, I am praying for you and Mike and each hour and day ahead.

deb

Linda said...

Like so many I have been waiting for an update. You are only a terrible blogger if you compare yourself to others. There has been much commotion on the mpip bloggers sites lately and yes many of them post more frequently than you. But we all keep checking back to see when you do post. Many of us know the ugly side of this cancer called melanoma and sometimes maybe we do wish it either killed us quicker or could be cured. I am sure there is a reason some are cured, some go quickly and some are left to suffer longer. We question why our loved ones must suffer and why we must quietly watch and wish there were more we could do. Why are we chosen to lead our loved one through this terrible ordeal. What difference will it make in our lives. You know I absolutely know your pain of wanting life and death similtaneously. I am sure many researchers are born from watching a process such as we are enduring. Maybe through your blog or someone elses, a young soul is determining that they will be the one to solve the mystery of melanoma and put the cure into medicine. I don't know. I just don't know but I keep plugging along too and try to stay open to what this whole process is teaching me. It has, if absolutely nothing else, shown me how many people care. I hope you at least have this too. Somewhere someday it will make more sense. As a fellow caregiver and as a mother I wish I could do more to comfort you. And I think you will know when it is OK to tell Mike it is time to go. Easier said than done but stay strong Liz.
Linda (mom to John)

Anonymous said...

Liz:

Obviously I have no idea what to hope for or pray for right now. But after watching you care for Mike over the last few months, what I do know, without a doubt, is that you are his angel. You have cared for him with a passion and determination that is truly remarkable. You have given all of yourself to him and made sure he has anything and everything he could possibly want, need or that would make him more comfortable. Everything you have done for him and everything you will do is right and perfect.

Incredibly, through all of this you have managed to make me laugh every single day. I love you so much!

P.S. I must say with regard to your blogging style, I really think it is quite irresponsible for you to admit on a public website that "you are just not good at everything." You have caused at least 10 people I know of to go into shock after reading that admission--you might think about deleting it. haha

Anonymous said...

You may be a terrible blogger, if the measure of blogging is frequency. But you are a gifted writer, if the measure of a writer is expressiveness, economy of language, and honesty. I only "know" you through your blog, and complimenting you on your writing has seemed inappropriate, given the circumstances. But you have a voice and a talent, and you should think of what you would like to do with it. That said, I am so sorry for what you are going through. I think of you every day, and have since I read your kind posts to others, despite your own circumstancs, on mpip. How you have endured what you have while still sending out helpful messaes to others is beyond me. You are a wonder, and I am just so sorry you are suffering as you are.

Anonymous said...

Dear Liz, please go easy on yourself. You are doing an amazing job of taking care of Mike and giving him what he needs most right now. No one can fault you for wanting to keep him with you as long as possible. That's a perfectly understandable and human feeling. Who knows how any of us would feel unless we were living your life right now? It is not for any of us to judge. I have experienced those mixed emotions and thoughts that you are having while watching my dad fight this disease and I know how draining and heart-wrenching it can be. All I can tell you is to follow your heart. Remember to take care of yourself, too. It's very easy to get caught up in thinking only of your loved one and forget that you have needs that have to be met. Please know that you are in the hearts of many people, more than you can possibly know. Don't worry about the blogging. Your priority right now is Mike. Hang in there, Liz, and know that you're doing much better than you're giving yourself credit for.

Anonymous said...

Liz,
Don't be hard on yourself, you are an amazing woman, like the others who have traveled this journey, most recently Tammy...the last thing you need is to be judging what you should/should not be doing. We all do what we feel, at the time, is the "right" thing, that is what you are doing. Try and not worry about tomorrow and love/live/enjoy Mike for NOW. He will decide when it is time to go. He is hanging on, that is what his body has done so far, so it will not change, that is the way he is as you said. Take care, we are all thinking of you both. My heart goes out to you....I think of you both daily.
Maureen (wife of Geoff, stage iv)

Anonymous said...

Dear Liz,

I have told you before, and I will tell you again - You are such an inspiration to me. The love and devotion you express for Mike makes me realize that I am both thankful and honored to have had you impact my life like you have. I know I don't know you that well on a personal level, but I feel a connection in a manner that inspired me to look at this precious world through different eyes. As for your torn feelings, I can only imagine how they must feel? Your inner strength must be flooded right now. I do believe that Mike entered your life for reasons far beyond being a husband, friend, and lover. I believe that through all the pain there will be a meaning.

You both are in our prayers every day.

Donna, Sheldon and Justin Smith

Anonymous said...

Liz:

Remember in the car on the way home from the shore a few summers ago, we were talking about the crazy girls in our shore house? And I said that I thanked god every day for Colleen. We had a good laugh during the conversation, but there was a serious side to it.

Well, I know in my heart that Mike thanks god every day for you--even if he throws a curse word in there! Your love, devotion, and commitment to Mike is an example for all of us. Everyone in this world should hope and pray that they have a "Liz" to love them like you love Mike!

Hang in there.

Love,
Alex and Colleen

Anonymous said...

Liz,
I have been in the same situation until just one week ago, when my Bryce surrendered to melanoma and passed away. What a horrible day. Bryce is no longer suffering, and that brings me a measure of peace. While I would have given anything to spend just one more day with him, I am glad that he is my guardian angel now. I begged him to hang on until that last minute, even though he said he was miserable and felt so useless. If you would like to call me, I will tell you all about that day and what I said to him. E-mail me your number (if you'd like) and I'll call you.
Snuggle with Mike as much as you can, and tell him wonderful stories of your history together. You are performing one of the most valiant acts of love right now, and every thought and fear you have is valid and true. You are amazing. I hope I can bring you some comfort and peace--please call!
tbrown@allosource.org
www.brycedbrown.com

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Anonymous said...

hi liz
thanks for being so real and honest in your words. My husband is not where mike is, but I know that you sharing this with me will help me in the future. I check on you guys here often. If it makes you feel better, I'm a worse blogger than you - I haven't started mine. Hang in there. I know it must hurt. It sounds like you are doing great.

Katrina

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Anonymous said...

As always, my prayers are with you!

maphere said...

Liz, you represent the best in humanity. You didn't sign up for the job but you have performed it with excellence. You don't know me but I've read your story for a while now and have thought about you and Mike over the last few days wondering what your day was like while I was doing "whatever" and prayed my prayers for you as you walk through this valley asking that God would not be silent, would not be detached but beside you giving both of you strength and inner peace.

With much respect and care,
Mike

Anonymous said...

God is listening...... He always does... He is there for the two of you..... Leave itup to him and he will guide you.....

Suzan and Christopher Hallam said...

Liz,

I was just thinking about you and Mike tonight and hoping you are doing okay today. You and Mike are always in my prayers and thoughts. If you need to talk, please call. I am always here for you.
Much Love,
Suzan

Anonymous said...

Dear Liz,
What a wonderful wife and caretaker you are; not to mention example of what love is. Always remember the vows you took on your wedding day and God will support you through this. I know it seems as though He isn't paying any attention to all of our prayers but I know from personal experience that He is. The only thing is this...he does it HIS way, not ours and our trust and faith in Him lead us to know that whatever He chooses is right for both you and Mike.
No one deserves this pain that you are both experiencing right now but soon that pain will be over for both of you and peace will prevail in your hearts. Hang in there. We don't know you personally but we sure know your heart and soul and am proud to know you. I hope we meet up someday so that I can tell you in person how proud of you I am. With love,
Barbara and Joe Scarola

Anonymous said...

Dear Liz - to paraphrase a quote I have taped to my 'fridge, and which has been there for the past 15 years through many life crises:

I believe in the sun when it does not shine; I believe in God when he is silent.

Don't even THINK that God does not hear you....he does. Why would he abandon you now in your crises with Mike? My prayers are for you and Mike == for answer to YOUR prayers.

"Be still and know that I am God"
Psalm 46:10

Lovingly, B. Schwab

Anonymous said...

hi liz
hi mike

Just checking in. I hope you have a good night.

Katrina

Anonymous said...

Dear Liz,
As I sit here reading and re-reading your words I feel lost at what I could ever possibly to make you feel any better. I am so sorry that this is happening to you and to Mike. Whenever i think about you guys I always think about you as two people who really know how to live life. I picutre you both as the life of the party always having fun and celebrating. After I first read your blog a few weeks ago I began to relaize that I need to savor every moment and be truly grateful for everything and everyday that I have. I wish it didn't take your struggle to make me realize this, but I thank you b/c without yourwords I am not sure I would have realized how imporatnt it is to truly live every day to the fullest extent possible.
It sounds as if you are truly Mike's angel. He is so lucky to have you by his side. Please know that whatever it is you are praying and hoping for these days when you are so torn, I am right there with you praying for you both as well.
Love, Aryn

Anonymous said...

You are constantly in my thoughts and prayers.

Eric (Miami)

Unknown said...

praying for you.. (friend of Renay)

jane said...

Dear Liz, My husband I think of you often and we frequently ask Shawn how you two are..Shawn has worked for Mike for 6 years now and he keeps us updated on how Mike is feeling. Words cannot express how we feel. You two are always in our prayers. Shawn has always thought hightly of Mike..Im sorry we have never met, but I think you are an amazing woman. I to have seen my friend struggle with brain cancer and it takes alot of patients and love. Mike has always been a great person to our sons and we always appreciated that. If there is anything we can do ,,please please let us know..ALL OUR PRAYERS. Spence and Jane McElhaney

Moe and Bobbie Worster said...

You two have shown what true love is.We continue to pray for your strength and peace. May the Lord direct your way each day.

Anonymous said...

Thinking & praying for you all.

Lori

Anonymous said...

Dear Liz, Renay called today to let me know about Mike. Having lost several loved ones, you are again torn by being glad that they are no longer suffering yet missing them so deeply. I will keep you and Mikes family in my prayers. Mike was loved by many. Take care of yourself and God Bless. Linda Eleuteri

Anonymous said...

Dear Liz,
altho I don't really know you I have been following your posts om mpip. I know your pain all too well...what you have been enduring is very difficult and when you mentioned having a lazy side brought a little grin to my face..o, how I remember feeling lazy but the fact is tiredness can take over as it did with me and sounds like it has with you too. My heartfelt sorrow is with you now. sue

Anonymous said...

Liz I followed your and mikes amazing and painfilled jouney. My dad just died jan 2 08, I can safely say it has been the most painfull journey and melanama can trick you...one week we are hopefull ...next bad news..the doctors leave the4 choices to ua and we don't the best decision to make. Up until the night before my dads death I was telling him he was gonna be fine...well I am brokenhearted.for all of us that suffer losing a family or loved one through this disease. I cannot imagine ever being happy again.I talked to my dad everyday we took vacations with dad I love traveling with my dad....I feel so lost and out of it..I just hope that it gets easier for all of us..to watch someone you love turn into some sad sorry looking old man ..who I dont' know..I just want my old dad back if even for a minute..I loved your's and mike's blog you sound like an amazing couple had more love between you then most people dont' ever have.I am truly broken hearted for you and for all of us going through this