(This post is in response to the huge outpouring of comments on my previous post “Time to Move On.” To better understand this post, go and read the previous post along with the comments.)
Amy-
I’m sorry that you are having to deal with what you are dealing with. You don’t deserve it, you didn’t do anything wrong to get here and it’s just not fair. My feelings for your situation run very, very deep as I’m sure you can understand. I truly wish I could take your struggles away.
In my response to your previous comment I asked you what it was from my post that scared you to cause you to respond in such a manner. Now I think I understand. Thank you for clarifying. Please let me try to explain my world a little bit better.
The dance between the caregiver and the one who needs care is delicate and takes its toll. The one who needs care (in my situation, my love, Maggie) had battles to fight that I can’t imagine. How does one come to terms with, as you suggested, 2 Christmases, 2 birthdays, 2 Halloweens, etc.? Maggie chose to mix denial with a choice to live every single day to the fullest. She/ we chose to live every single day like there wasn’t a time bomb ticking and that it wasn’t 2 Halloweens, 2 birthdays, etc. For giving it a time frame was essentially giving up. Doctors and their bleak outcomes can go suck it.
I asked Maggie back when all this started if she wanted to sell the house and travel the world for the next few years. She said “absolutely not!” I kind of thought she was crazy at the time but I went with her wishes. Her logic was sound: “If we travel the world for X months and then come home, then what? Do I lay down and die? Now that the final trip is done is my life over? Do we just wait? No, we should continue on with our lives like we have planned.”
Later, I asked her if she really thought it was worth it to go back to law school. She told me “Absolutely!” Again, her logic was sound: “Me graduating from law school is my dream. To deviate from that dream would mean that The Cancer won. And, besides, what if I didn’t return to law school (for the remaining six months) and six months later I was still alive and doing fine? I could have graduated in that time. What if I live another two years? In those two years I could have been a practicing lawyer and helped a ton of people. Or I could have sat at home being depressed waiting to die. That second part blows.”
Even later, I asked her again if I should delay my school. Like a broken record, she said “Absolutely not! Going to Acton has been your dream for years. If we let The Cancer derail us from our dreams then The Cancer wins and we lose. Besides, what if gradation time for the class you WOULD have been in comes around and I’m still alive. What a horrible waste of time and life that would be that we spent waiting for me to die. Who would want to live like that? You should never live waiting to die.”
Every single time we had this conversation I asked her “But, my sweet love, what if things get bad?” And every time she smiled her beautiful smile and said “Then we’ll deal with that if and when it happens. We’ll move forward until we can’t. It would be much more sad to have sat around waiting for misery that never came than to live life to its fullest and one day have to slow down and eventually call it a day. A moment wasted is a moment lost.”
And that’s what we did. I hope this blog tells that story. We never one single time said “we can’t do that because of The Cancer.” Instead, we said “We are going to live our lives just like we planned, following our dream together, hand in hand.” We made that decision and lived it out.
I can not put myself in your shoes. I can not at all wrap my head around how it feels to be told by my doctor that I have two years of doing stuff left. But I can tell you from a very, very, very experienced perspective that your happiness is completely in your hands. It’s a choice. Every morning you wake up you choose Path A or Path B. Yeah, yeah, I know that fate has dealt a tough hand but that’s not really something you have a choice in. That’s done and you are going to have to come to terms with that. But how you face every day, that’s your choice. If you are going to have a limited time on this earth doing stuff (LIKE WE ALL DO!) wouldn’t you rather spend that time smiling and having fun?
From the caregiver’s perspective, I can offer you this. First, you have absolutely no clue what it’s like to watch the person who you adore, worship, live for, love, would die for, would light your eyelids on fire for, would peel your skin off for, etc. suffer. Just like I have no idea what it’s like to be told my life will be cut short, you have no idea how it feels for someone who loves you watch you suffer. So stop that judgmental attitude right now. This all around sucks for everyone involved. There’s no measuring stick, awards for being the most upset, or bonuses for being the most pissed off. It sucks. Yeah, I got it. I’ve been there, done it. Get over that part and I say this not because I don’t care, but because, as you stated, the doctors told you two years. TWO YEARS! You don’t have time for this crap!* Is this REALLY how you want to live your last two years? There are so many more magical moments that are within your grasp! Grab! And don’t let go! Keep grabbing!
* Do any of us, really, have time for this type of fatalistic mental masturbation? Go get busy living!
As a caregiver, well, I can only speak for me and from my experience, there is absolutely nothing comparable to watching someone you love slowly fade away. When they suffer from pain and discomfort it’s torturous. Making matters worse, when you are given the drugs and the control to give the drugs that will help numb their pain but get to watch those same comfort-giving drugs take away more and more of whom you love, you struggle in a way that I hope most people never have to understand. Knowing you have to choose between your loved one’s comfort and your own desire to just talk to her one more time is… well, heartbreaking doesn’t quite do it justice. Let me digress with a story.
She was breathing hard and could barely talk. Something had taken my Angel’s voice away. She had a far away look in her eyes but I recognized the primal look of panic and fear. Yet, despite our years of working through problems with discussions, we were both prisoners to the silence. Her breathing was heavy. Her whole body heaved as she fought for air. There were two labored parts to her every breaths: one was the effort to breathe in and it shook her entire body. The other was the effort to relax and let go. Both showed on her face. Both hurt my eyes.
The only tool I had was morphine. Morphine worked to slow the breathing by tricking the body into thinking it didn’t need another breath. It threw the whole gotta-breath sensors off allowing for less urgency and panic. It also numbed the brain and let the body relax overall, allowing for a more tranquil state of mind to develop. Stoned. Not a fun, ah-this-is-pretty-fun stoned but a wow-I-don’t-have-to-breathe stoned. So, here I was, the giver of relief and the taker-away of my sweet heart. And I got to choose. It was my decision and mine alone. I of course wanted her to be comfortable and for the suffering to end. But the cost was that I had to say goodbye. I held that string in my hand. Can you say you understand that pain? Can you really comprehend what it means to be a caregiver caught in that moment? I still can’t, really. But I did. I chose. I chose her.
….
Amy, I’m very, very sorry that you are in the situation you are in. Oh man, just writing this blog entry is challenging my emotional fortitude. You have to understand, though, that the people who are around you that are suffering WITH you and will be until this is done, however it ends, because they love you. You are mourning right now. While they might not know the pain of the poisons that are being pumped into your blood, they are suffering from a different sort of pain. I can promise you (and if you read more of my blog posts) every single time I watched Maggie get chemo it just ripped apart my insides watching her being eaten by the poisons they served up to beat down The Tumors. I have no words to describe the misery I felt watching her melt under the oppressive crap pumped into her veins.
The one thing I can say for sure, the one thing that sticks out in my head as her dying wish is that she wanted me to be happy. She felt that there was absolutely no reason why my suffering should continue after she was gone. She never felt… Well, she and I had many conversations about what would happen after It. She steadfastly insisted that that it didn’t matter. After all, she would be gone, no longer with me and that my life was now all about me.
What kind of flowers would you like at the funeral?: I don’t care. I’ll be dead. What kind of flowers would you like at my funeral?
How do you feel about cremation?: Sure. Whatever. I’ll be dead. I’m pretty sure I won’t care.
Do you want any particular songs player at your memorial?: No, I’ll be dead. I won’t care. Is there a song that means something to you?
If we choose cremation, where do you want your ashes spread?: I don’t know. Where would it be meaningful to you?
If I start dating will you haunt my new girlfriend?: No, of course not. I just want you to be happy. Unless she’s a bitch and mistreats you. Then, yes, I’ll make her life miserable.
What should I do with your shoes?: Give them to my friends. I won’t need them any more.
Amy, I can’t imagine your situation and you can’t imagine mine. But my desire to move on does not imply anything about my relationship with my wonderful wife. In fact, were she here speaking to me, I suspect that she’d be telling me get on with it. I’m 100% certain. She’d only want me to be happy which is, I’m certain, the same thing you want for every single person in your life.
As many have suggested, I’ve been mourning a long, long time. Every day I sat and watched the life fade from my sweetheart’s eyes I cried. Many times we’d cry together because we were both so, so unbelievably sad. It hasn’t been two months. It’s been three long years of sadness with some fun party times sprinkled in between. Three years of mourning. And I’m so tired of being sad. So, as I stated in my last post, I’m done with it. It’s time for me to move on.
I hope you can understand this, not because I need you to, but because one day your loved ones will look to you for strength. They will be scared and you’ll need to give them permission to live life and be happy. They will feel guilt you can’t imagine. They will be scared and hurting. And that hurt doesn’t just stop one day like it did for Maggie. This is the kind of hurt that pays for psychiatrist’s Porsches. Give them the gift of permission to do what ever they need to do to heal. They will love you more for it. I promise.
I wish for you all the best that life can give you and that you can wring out of life. God Speed on what ever journey you choose.
Now, with that said, I’m done with this, too. I’ve already been a caregiver once. I’m sorry I can’t offer more. I’m headed out to a pool bbq with friends where I’m going to laugh and swim and eat and have a great time. Then I’m going to sit on top of the same exact roof of the parking garage where we held Maggie’s memorial to watch a fantastic fireworks display. I’m going to oooo and aaaah and smile and laugh (and I may even shed a silent tear or two but don’t tell anyone, please.) I’m going to have a fun, fun day. And you know what’s great? Maggie’s coming with me. 🙂
Bring on the cake. And cheers to Maggie’s way, she gives us all strength.
in regards to a comment to the previous post – these are NOT the words of a narcissistic man … faaaar from it! His words are so full of graciousness, empathy and painful experience. I truely do hope his words reach out and mean something and are helpful to Amy. Those of us who know Chris … “narcism” is never a word we would have ever thought to describe him with. He is the absolute opposite of that. Sorry – that comment really got under my skin.
Thank you, Brooke. That previous post describing Chris as narcissistic hurt me deeply. Thank you for putting things back in perspective. Meme
Wow Chris.
I give my mom’s morphine to her. I used to HATE IT. I felt like I was drugging her (well I guess I am). I told her that…she told me that she’d rather be drugged that be in pain. I especially hate giving it to her at 3am…she’s asleep and I have to wake her up just enough to open her mouth. But, if I don’t, she will awaken with pain so horrible that she cries (and she has a high tolerance for pain). So…yeah, I know where you’re coming from on that.
Since my mom was diagnosed, she’s been on three cruises and flown for the first time in her life. The day she found out, she came home and worked in her garden. I cried all day and could barely look at her for a week. Then, I told myself I wasn’t doing anyone any good with my behavior. She wasn’t letting the cancer deter her (at least mentally…physically it has taken it’s toll).
And, I keep telling myself we’re ALL terminal. Since she was given her diagnosis, we’ve had several friends and relatives pass on who weren’t even sick. You never know. Life has no guarantees.
Sorry for the rambling.
I came here to try to find some answers to living with someone with cancer. What a joke!
You guys are all such hipocrits. This is an open blog, as someone recently said. Anyone can post whatever they want.
All of who are are Chris’ “friends” blasted Amy for putting her opinion, but yet you all can put your opinion and that is fine.
Before jumping on anyone, like you do, why don’t you ask why they posted what they did. Maybe if you asked, you would find out.
All you know how to put is “ditto” to something that one of your “friends” said.
You are all a bunch of rich snots. With the attitudes you have and jumping down someone’s throat that you don’t even know who is giving their opinion on an open blog, I hope you never ever are anyone’s caregiver.
I suspect now all of sudden all of Chris’ “friends” will now jump on his answer here and say oh what a good response Chris, blah, blah, blah, and maybe tell Amy that you are sorry. Unbelievable what this turned out like.
I, like the gentleman not long ago, will read Chris’ posts because they are very informative, funny at times and from the heart. However, I don’t think that I will read any of your comments because they are useless and extremely rude for people who are so educated.
Chris and Amy both, live your life to the fullest and in the way that you see fit. Try to laugh whenever you can. Take care of yourselves. I do know what it is like to be a caregiver of a mother and father with cancer.
TIllie,
The fact that you can post your thoughts on this blog, as well as all of Chris’ friends, acquaintances, well-wishers, and strangers, makes it an open blog. Also, anyone is allowed to post his/her comment on the blog (i.e. you)–whether you agree with the opinion or not. Finally, as you can see, Chris has been more than willing to discuss posts–positive or negative. Chris is the owner of the blog, not those of us who are obliged to offer our unsolicited opinion, and has yet to portray an attitude of hypocrisy. He openly discussed Amy’s post and will, no doubt, and from the life-experience we all wish he & Maggie did not have to endure, chime in again on a post.
I can see that your emotions are close to the surface and I hope that you and your family have many happy memories. I wish you the best in a painful situation and hope that this does not govern your happiness.
TK
If any of you knew the pain of having someone close to you have cancer with little to no insurance and not much money, it would make your heads spin. It is sad that if you don’t have money like some but yet a treatment would help you live quite a bit longer, you are given no options but hospice. You know there are options out there for those with money, but money is the driving factor in all of healthcare. If any of you went through this, you would think differently and be a bit more kinder to people.
Some one once put in this blog to be kind to everyone because you never know what inner battle they are fighting (something to these words).
I know what they are going thru and have gone thru.
Tillie’s friend
Tillie,
You made the choice to read and blast us all with self-righteous judgment. Really????
Do you feel better now? You obviously take pleasure in being nasty or you wouldn’t have taken the time.
How’s that working for your health, mental or otherwise? Hypothetical question.
Without condemning or condoning, let’s just let this go. There will be no winner in any battle that starts here. So many people are already losing the war with The Cancer, there’s no reason for us to go starting others.
If you are worried about my feelers because of this exchange, please don’t. I’ve been neither offended nor angered. I have, however, taken a moment to be sad. But I’ve moved on.
Thank you to everyone for doing the same and letting this drop.
WOW…
That’s all I can think of to say regarding this post.
But, in response to one of your replies to the last post:
Chris, I respectfully disagree that this blog has turned into anything remotely close to narcissim (?sp). When Maggie was alive, we came here for status updates on her. Now that she’s gone, we want status updates on you! We want to know how you are doing… Those of us who knew and cared deeply for Maggie, but haven’t had the pleasure of meeting you, have come to care deeply for you, too, because of your blog. I’m quite certain that if you quit writing you would be bombarded with phone calls once again.
Best wishes,
Melissa
P.S. Best wishes to you, too, Amy. No one should have to go through what either you or Chris have. My prayers for a miracle are with you and your family.
Chris I couldn’t even finish reading this at the moment because I’m sitting in the airport bawling and can’t read through my tears. You are so raw and real and I admire those things. Amy my heart prays for a whole lotta love (led zep yeah ;)) and laughter. Live, laugh, and love everyday every minute as much as you can. Maggie wants chris to be happy, ASAP. Dating and all that mumbo jumbo may not happen for a while, but when the time us right, it will. I believe in my heart Maggie will send her.
Though I disagree with Amy’s original comment, I’m now thankful to her for posting because it inspired you to write this powerful post. (I am very sorry that she is also in this sad situation. Amy, I wish the best for you,too.) I hope that there are oncologists and researchers out there who read your post. (I hope they read the entire blog). I hope that there are politicians and philanthropists who control the money that funds cancer research who read it. I hope there are regulators from the FDA, drug companies and insurance companies who control access to treatments and how much it costs who read it. I hope there are patients and family members and friends who read it and that everyone- somehow- in some great collective anger, frustration and inspiration- decides to break through the red tape, the territorial bickering of researchers and doctors and drug companies, the egos, the insufficient funding, and the general b.s. that seems to be slowing any progress in this brutal disease so that people like you and Maggie, Amy and her family, Brad and Fiona, myself and Mr. Longhorn, and all the other patients and their loved ones out there will never, ever have to face those terrible decisions, witness and experience that suffering, nor have discussions like the ones you describe because of cancer.
Given that sadly that day is not here yet, one of the most inspiring aspects of this story has been you and Maggie’s decision to truly live your lives in spite of her prognosis. It came through loud in clear right to the end, and continues with you. There is a deep and sincere happiness, even in the midst of great sadness, that can be found when- in the words of Joseph Campbell- you “follow your bliss.” We all have only one life. And as you said, we cannot choose our fate, but we can choose how we feel. Again, I wonder how could people read this blog, see the selflessness and raw pain of your experience, and not realize the possibility that despite the recent upbeat nature, any happiness might be a fragile peace? Of the many things both good and bad that this shared cancer experience should reveal… one is the kindness to offer support and hope to fellow travelers rather than judgment and negativity. (And freedom of expression is not lost with a caring tone.) Happiness is all I wish on those who have suffered and are suffering such a heartbreaking loss. Chris, your clear voice continues- again, thank you.
No one can tell a person how to live with cancer. You can do as Maggie did or curl up in a ball in bed or spend all our time with family or in a cave. There is no right or wrong, good or bad way. It’s all up to the individual and no one can be a judge and say what way is the right way to leave this world, spend the last few years on it knowing you or denying you are terminal. No one can ever say this is how YOU should do it. Just because this blog is about one person doing it her way doesn’t make it the right or wrong way or the way to follow. It was just her way. We all have our own way of dealing with things and cancer is the Big One. The way a person handles cancer is up to them. Smiles, no smiles, it’s a very personal decision and not one up for comment or discussion. Do it you way!
So I’ve read it all and one thing keeps repeating in my head. My husband and I have both dealt with somewhat serious illnesses (at different times). We both agree that it is so much more difficult to be the caregiver than to be the one who’s ill. Chris said it in such a convincing and descriptive way in this post. And while Maggie suffered in one way, Chris suffered in a different way…a way that is just so painful that there is no true way to describe it.
I admit that I when I read about Chris cleaning out some of Maggie’s things, I thought “okay, it’s time.” But then going out was a whole other thing. But now, after thinking out it, I realize that only Chris knows what is working for him.
So Chris, you have my respect for being a survivor through all of this. Hang in there, and thank you for your writings.
How did people mourn before blogs and Tweets? How did they cope without morbidly curious groupies providing the griever a constant flow of external validation. How ever did people get through things before the computer age.
Chris:
Is there such a thing as “The Lynch Foundation” for helping people with that genetic disorder? If not, perhaps an organization can be started, and that would help you focus more on helping other people survive longer than Maggie did.
I think of you and hope that there is another chance at some of life’s new challenges and goals after Maggie. This will take time to heal, and my thoughts and prayers are with you as you find a journey to continue on.
Love and Prayers with God,
Maggie’s Aunt
Pat Valente
Hey Chris! Rock Out and Have A BALL!!!!
The following was read at my sisterinlaw’s funeral, and I wanted to share it:
“We talk about what it can do to a body, but in reality, cancer is so limited. Let me tell you what cancer can’t do…..
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot eat away peace
It cannot destroy confidence
It cannot kill friendship
It cannot shut out memories
It cannot silence courage
It cannot invade the soul
It cannot reduce eternal life
It cannot quench the spirit
It cannot lessen the power of resurrection
Chris,
Ed and I were talking about you recently — Ed googled you expecting to find you running some fancy tech company. Instead he found your blog. I was sad to see it and hope that you are doing well despite the huge loss you have suffered. I’m glad to see you are still writing; it is one of your many gifts. We are thinking about you…
Wow. Dori, what a blast from my past. Thank you for not just looking and reading but for posting.
Please check your email. And tell Ed I said hi and thanks again for that help with my motorcycle that one time long, long time ago.
Thank you Chris for sharing everything that you and Maggie have been through. I stumbled upon this blog while researching cancer information after my Mom was diagnosed and have kept up with your updates ever since.
My Mom was diagnosed at 50 with colon cancer and fought very, very hard- tried to kick back cancer any way she could so she had more time but did not make it here on earth to see her 51st birthday. I still cant believe it some days but at other times it is so real that she is not here it takes my breath away.
I was my Mom’s primary caregiver and lived with her while I watched a beautiful, fun, vibrant, loving mother and friend be beaten up by cancer and the tools used to “treat it”. Your post about erasing the recorded tv shows was sooooo spot on. I sat there with the remote in my hand in disbelief that I was erasing Dancing With the Stars…I kept thinking I was betraying my Mom in some way by erasing the episodes she had not watched yet. And then I thought I was Crazy (with a capital C) for being worried about erasing those programs. Lots of talking to myself that night- trying to tell myself I wasnt Crazy for feeling Crazy right now…but yet knowing that I am Crazy at the same time. Crazy because of the grief, anger, sadness, desperation, and exhaustion i was feeling. Cancer cannot take certain things away from people or the lives they lead because of cancer but, cancer can add a element of craziness that I have concluded comes with the territory of emotion, love and friendship.
I am getting a little long winded with this comment but it is because I want you to know that I look to your updates to tell me that yes, others in a similar situation to mine go thru some of the same things I do because of all the emotion loss can create. Please, please dont stop with your updates. Let sadness dominate when it needs to but– enjoy your days as best you can. Take Care.
Wow, I’ve been away from the “blog” for a week or so and am surprised at what I’ve just read. To each his or her own is what I say.
Let’s not forget that this isn’t really a “blog”. It’s a fortunate glimpse into the trials and tribulations of two AMAZING people, chock full of experience and reference. The time, emotion and energy it must take to to keep all of us updated is astounding to me. I just want to say thank you Chris. Thank you.
When you’re ready to move on, you’ll move on. That’s up to you and no one else.