Somewhat related to the posts of the week, somewhat not

[ztweb]

When I first joined this site, someone told me, "Jennifer, I don't want to hurt your feelings, but no matter how hard you try as a daughter, you will never understand what it is like for your dad to have cancer. You don't know what is going through his mind as he lays in bed at night, unable to sleep, staring at the ceiling, or when you call him on the phone, or when he sees his grandchildren from across the room."

At first I remember feeling a bit taken aback, as I have always been one to empathize the best way I can, yet I realized that no matter what the situation, I simply did not know what it was like. I have kept that attitude throughout this journey, taking care of myself, and turning to you with cancer, and you who are caregivers, to help me understand the whole picture. We are all part of the picture. I wish the da*n picture didn't even exist (not that I don't appreciate the friendships I have created)!

God bless you all today and always!

Jen

[ginnyde]

Jen,

I am so right there with you. While I suffered unbelievably while Earl was sick and I have grieved horribly since his death, I have always, always known that I could never understand what Earl was thinking. Like so many men, he was very stoic and very protective of me.

I can say for sure, that no matter how much I miss him, (and I do every minute), I feel sorrier for him for having suffered so much and dying so young.

[bware21]

Having cancer or watching it do its work on your loved one -- which is worse? For the loved ones, let me give you some insight ... and if there's a big "duh" factor in this, so be it. For those who have cancer, it may not be the same for them as it is for me but I'm pretty darn sure there's commonality somewhere in this.

Let me start with a story to establish a mind set. I have an "almost" classic car. It was one of the last Jaguars off the production line in Coventry and just so happens to be the very car that Pete Postlethwaite was driving when he picked up Kevin Spacey at the end of the movie, The Usual Suspects. Basically it was my pride and joy and I'd looked after it. It was Christmas Eve or maybe a couple of days before. A young woman backed into me. She jumps out of her SUV. I wind down my window. She's says something really stupid and I say, "Have a Merry Christmas" and drive off -- I don't even get out of the car. There's at least $1,000 worth of damage to the back of my car and I didn't bat an eyelid. That told me something. Had I given up already? At that moment in time the answer was probably yes.

And that's the key -- a moment in time, with each moment being different. I haven't had the car fixed, and I'm still not sure if it's because I don't want to waste the money on it or it's serving as a reminder. A reminder of what, I have no idea ... but it must be something.

So what do I think about during the day? Not a lot actually. The really hard stuff is neatly stored away somewhere -- like my wife, Teri, who is being so strong throughout all this that it blows my mind. Yes, I get fragments of thoughts seeping out of that hideaway place ... like Teri is just 43 years old and I'll be leaving her with a house that is parially remodeled, yada yada. In those "moments" when I'm feeling strong I'll say stuff like "sell the bloody house" and "I won't be mad if you get remarried." But mostly I'm not strong enough to face those thoughts for longer than a second or two, so back they go to their safe place, which is full to overflowing. As a consequence I lose my train of thought quite easily and forget the simple stuff. For example, I just had to go downstairs and check the American Beauty DVD to remember Kevin Spacey's name. I used to think this was the onset of brain cancer but now I've figured it's just the mental struggle taking its toll.

And what do I think about at night when I go to bed? This is a lot different. Now I'm rather hoping that my dear mother will appear to me in a dream and offer some guidance ... or anyone else for that matter. No luck yet. And what about dreams? Why haven't I had a nightmare about death yet? Here's a possible explanation from Carl Jung, and I quote from another source:

"Not long before he passed away, Jung was asked if he believed in life after death. Asserting that he did, Jung proffered as evidence the fact that the dreams of individuals approaching death seem to disregard their own approaching mortality, as if it was a relatively insignificant transition."

And from psychoanalyst Marie-Louise von Franz:

"... dreams about a continuity beyond death cannot be simply wish-fulfillment, partially because dreamers on the edge of death dream about the body in quite stark and realistic terms. If dreams were playing into the dreamer's need to deny death, then such scenes would be conspicuously absent from dreams."

How do I feel physically? Weird, but for the most part I feel just fine. The thing that bugs me the most (here comes the vanity) is the loss of my bloody hair and the fact that I now loook like I just spent 3 years in Auschwitz. The photo in my posts doesn't come close to who I am right now and that really ticks me off. But like I said, that's just a vanity thing and rather insignificant ... or is it? Nope, it's actually really important because when you look in the mirror and you don't recognize yourself it has a deep and piercing effect on your own sense of self. The other obvious physical reality is the constant overwhelming concern that any moment the s**t is going to hit the fan. As I've said to Teri when I've joked that I feel pretty good ... maybe this is just the calm before the storm? And it probably is, but I can't think too much about that.

I was reading an interview with Billy Graham just the other day and the reporter asked him: "Are you afraid of death?" Nope, he says (actually he say "no" but "nope" feels just a little more upbeat), but I am afraid of the dying process -- duh! And that just about sums up my attitude to death. And it's probably the most common feeling there is. For me, to be afraid of death is just plain ridiculous as that would require you to spend your entire life in fear. The dying process, on the other hand, is something less easily dismissed. I can't imagine there's a human being on the planet (with perhaps the exception of the occasional psychotic) who isn't afraid of the dying process. I've been there with my mother and my uncle and IT SUCKS. Selfish of me, but I've asked Teri not to stick me in a hospice. Selfish, because that would mean Teri would have to go through the whole sordid death business with me, and that is, without exception, the most upsetting piece of this entire puzzle. Now how my dying process plays itself out I have no idea -- maybe I won't be coherent so I won't have a say in the matter. Anything's possible. And yes, I've looked at my shotgun a couple of times, but there's just no way I'm taking the easy way out. What a legacy that would be?

I used to pray every day for a miracle but I stopped doing that because I figured God heard me the first time. The chemotherapy? It seems to be working. Got an X-ray result yesterday which showed no evidence of disease in the lung, but that went in one ear and out the other -- you can only take so many tests before you start feeling like a damn guinea pig and the results become meaningless. Of course, I'm thoroughly grateful for the chemical treatments, and I know they're having a positive effect, but I'm putting my hopes somewhere a little more substantial and long-lasting. I could be right, I could be wrong.

I think I'm starting to ramble here so I'll close it down. Hope this gives some of you an insight, even if it's just about me. Not that you needed it. I know that everyone on this site has their own story and their own unspoken fears. But let's end it on a more cheerful note.

There's an upside to everything, even this -- it stops you in your tracks and forces you to think about life in a way that you should have been thinking all along. For that I'm grateful.

Take care,

Bill

[Connie22]

Bill-

Thanks for taking the time to share especially on the dying process. I so totally "get it". I really enjoy your writing, keep it up!

Connie

[Treebywater]

Jen--I loved your post and your thoughts and your succinct way of summing up your feelings as a caregiver, and your knowledge of your limitations in understanding your Dad's role as the one with cancer.

And Bill, I think you so very, very much for sharing some of the thoughts from 'inside your head' to give us a glimpse of what this ride is like from the seat that you're in.

--edited because I was really just rambling on something terrible--

[Mendy]

Bill,

You and my husband seem to be experiencing many similar thoughts and emotions. I appreciate that you took the time to share your thoughts. My husband often won't share what he is thinking but will react to me and say that I don't have cancer and can't know what it is like and he is right. I try my best but I am not a mind reader (although my son thinks I am ). He is having the hardest time with his hair loss and I sometimes forget that he doesn't look the same as he did before all this started because he is still the man I love and I find him just as attractive, maybe even more so. Before he started chemo, he had thick shoulder length hair that he wore in a ponytail. Right after his first infusion he cut if off and had a buzz cut which looked great. Now he is wearing a bandana most of the time and just isn't comfortable with the way he looks. We got into a heated discussion yesterday because I wanted him to go to a viewing to pay respects to my sister-in-law and brother who drove up to Maryland from Georgia to bury her grandfather. He adamantly refused because he didn't want people looking at him and asking questions about lung cancer. I didn't really understand and just had to drop it because he was getting very upset with me. My assumption was that losing hair for a man wouldn't be as traumatic as it would for a woman but it is.

My conclusion is that cancer is very difficult for the person experiencing it and for the people who love them.

Mendy

[Connie B]

You know Jen, I too thought I knew what it felt like being a lc survivor when I went through it with my dad, my mom and my sister. I can only say that I learned the hard way just how much I DIDN'T KNOW what it was really like. I wouldn't wish this disease on anyone. No matter what side of the fence your on, it really sucks!

It's true that we are all survivors, and yet it's very different. How does that saying go? "Until you have walked in my shoes........" It's that shoe thing again!