Profiles of Hope: First Edition

I mentioned that I want to start spotlighting individuals who are walking in life and hope and dealing with cancer in one way or another. This is my first attempt at what I'm calling, "Profiles of Hope" (Hey--if you're going to rip someone off, may as well be a Kennedy, right?).

I've gotten to know the stories of several individuals in the blogworld through this blog, and searching for others who are dealing with cancer of any kind. One of the first blogs that really struck a chord with me was, A Woman of Many Parts. There was an honesty and a vulnerablity about the words revealing a strengh of character that you don't see very often. What I read wasn't Lance Armstrong spin-doctoring about what a "gift" cancer could be. It was stark reality, but far from despair. Through her blog, and through just a few interactions with Minerva, I've been given another window that helps me to see what REAL HOPE is. REAL HOPE doesn't pretend that it's not scared shitless just to make people feel better. But it doesn't wallow in the mire of fear and pity either. REAL HOPE can be honest about the hard stuff, but pushes you towards that truly good stuff of substance that helps you to remember why it is that we say life is good.

Not only did Minerva encourage me by sharing her story, but she's come and shared her compassion with me. She has validated my feelings when I desperately needed to know that I was really ok right where I was. She has spurred me on to focus on the light. She has helped me hold onto hope simply with the comments that she's made here at my blog.

I think one of the most powerful gifts she has given me, without even knowing it I'm sure, is a testimony to life. When loss just seemed to be swirling around me, when it seemed that the beast was too strong, I always, always, always though, "But look at Minerva. She's still going. And she is going to win." She was the counter-argument to the loss and the hopelessness, every time that I was bogged down in the losses that loomed, or came and with the harshest force. She was, some days, the one ray of light that I held onto when I thought about the beast that is cancer.

She is fighting the beast. She is "evicting" it from taking up residence in her life. And she is winning.

Thanks, Minerva for giving me courage, for sharing compassion even in the midst of your own struggle, and for all in all being remarkable.

Sympathy Card Rant

Ok. So... Gotta do a little bit on the topic of 'grief' in general here. Well... really more of a card vent. Bear with me, or read another post if you're just not into it.

I've had to buy several sympathy cards lately, and of course we got scores of them when Mom died.

Now don't get me wrong, I really loved and appreciated every one that we got, mostly because I knew the people who were sending them, and their love and care, and thought was the comfort. I get that that's the point. Some of them even had nice sentiments.

But, in general, I HATE them. I mean seriously--have you gone to Hallmark and read any? They are terrible! Especially the "Christiany" ones. It's like here--you've just been dealt a devestating blow, now how about a sermon?

The ones I hate most are the ones that try to tell you how to feel, "They aren't gone, they are merely away." "We can't understand God's plan, but He always has one." Oh PUHLEASE!!!!

When I'm buying one, I usually end up trying to find the most generic one I can with the least amount of sermonizing and then write my own note. Occasionally I'll find one that just, "fits" and that is always a relief, but it truly is a rare occasion.

I just don't get it. Why is our society so afraid to talk about the fact that death happens? I mean, statistically it's a certainty for all of us, right? And, unless a larger number than I'm aware of are holed up as hermits, people who die generally leave a few people behind. So why are we so afraid of saying words that are real instead of sermonizing or glossing over the pain--or worst of all trying to tell people how to feel their feelings?

In general, I think we'd be a healthier society if we got more comfortable with the idea of loss. We're so inundated with gimmee, gimmees, but we experience some form of loss many, many times--loss of friends, loss of jobs, loss of hometowns, loss of paradigms. Why can't we be real about that?

I think I might start my own line of sympathy cards. They will have messages like, "Grief sucks. I'm here for you." Or, "Call me if you need another casserole (or if you want me to wisk you away for some real food since I know you have tons of them)." Or, "Hurt in whatever way works." Or, "There is no normal now. Be gentle with yourself."

They might not be flowery, but they seem more real to me than sanitized cardboard sermons.

--End Rant--

A Mom Memory

Some friends of ours just gave birth to a beautiful little guy, and I just scrolled through the photos on the hospital website to see his precious little wrinkly, newborn face.

That made me think of my Mama. When I was growing up, every couple of weeks our newspaper would run an ad for the maternity ward at one of the local hospitals. Mom would always yell, "Val! New babies, new babies!" and I'd rush over and we'd "Ooooo" and "Ahhh" over them.

Course neither of us were bashful. We both frequently made comments like, "That baby has a little Elvis lip." "Whoa.... That ones hairy!" and, "That kid is so ugly he's cute!"

Yeah. That's classic Mom. :) Loving little babies and telling it straight all in one moment.

Thoughts From Another Blogger

I read a really great post written by a lady fighting Lung Cancer. It's about how to be supportive of a person dealing with cancer or any other difficult illness (I would add perhaps applicable to many challenging circumstances--I get similar comments just from being a Navy wife. How silly!).

Anyway. This was just a tremendous "Aha!" for me. It makes me re-evaluate my own interactions, and it says some of what I said in my previous post about helping when things are dire so much better than I said it.

Anyway. Enjoy!

Hope

For the record, I do have it. I feel like this blog weighs several tons. It seems to be so full of loss. I wish that I could believe that it's because I am somehow fixating on loss, but in reality, I think that my every day life was just full of it this year.

However, it doesn't escape me that folks who are touched by cancer live by hope. And account after account of loss I guess just isn't 'hope-filled' (though even in the passing of people we love there is hope... and somehow a bit of joy even filters through now and again).

With that in mind, I want to try to make a concerted effort to inject more hope here. Sometime in the next week I want to post the first of what I want to call "Profiles of Hope." In short, this will be my chance to throw the spotlight on some remarkable people living day by day with the reality of cancer, and surviving.

On top of that, and despite my late-night ramblings, I want to assure readers again that hope is something I have. My ire is up when it comes to this beast and I am determined to fight it in my own way. I am a caregiver survivor. And I have been touched by cancer in ways too numerous to count. I won't let it have the last word.

The weather here today was very strange...When I woke up the sun was shining so brightly that I breathed in a sigh of relief. The light was here at last. But, it rained most of the day. All day, the rain and the sun seemed to be competing. The sun would dapple our yard with sunspots, and then the rain would come again. This evening we had both rain and sun and I tell you the truth--half of my yard was dry, and the other half was being rained on.

That's how I feel in my life right now. Sunshine is breaking through the sadness that has surrounded the events of my life. It seems that light and dark are battling it out.

I know who will win.

I know because I AM a light-bearer.

I will try to do a better job of living up to that title.

12:44

It's 12:44 a.m. and here I am still awake. I've been struggling with insomnia lately... Maybe it's caffeine, though I didn't even get through half of my can of Coke tonight. I am more apt to suspect it's the events of the last couple of weeks, and the events of the last couple of years keeping me up. Those are the tapes that are playing in my head when I wish I was sleeping.

Tonight, to tire myself, I read through all the entries of this blog. I started it in February of 2005... Here it is May of 2006. The days, and months mean nothing to me. I move through them in chronology, but I'm not entirely sure what timeline the rest of me is on.

The calendar tells me my Mom has been dead for 10 months. I don't believe that. The pain of missing her feels fresh... and the thought of that much time being gone feels like another knife stabbing at the wound.

My husband came and went several times in the lifespan of this blog. My daughter was born, and is now walking and saying new words... She's a toddler now. I split time between Washington and Illinois. And time is split between, "When Mom was here." and "Now that she's not."

I Wish I could say that I want life to go back to what it was, but I don't know when I would go back to. It's been a whirlwind since I got married, but I wouldn't wish my marriage away. I wish I was out of the whirlwind, but I will never be completely out. I will always carry with me some of the pain of the last years.

I have healed some. I am reluctant to admit it because in admitting that, it feels as though I let go of my Mom.

It's also hard to heal though when new blows keep coming. Somehow, I think I still am.

I'm still walking. I am. I'm still raising a beautiful, happy little girl. I'm still being a Navy wife rolling with life's punches and my husband's crazy schedule. I'm investigating new leanings and directions that have come about as a result of this year. I still am. I still go on.

But at 12:51, I sure wish I could also be asleep.

Good News for a Change!

My Uncle Marvin's surgery to address his prostate cancer was a success, and he is home recuperating. Looks like he is going to be a TWO TIME beast beater.

It was about time for some good news!!!

"Uncle Bob"

The first time Carolyn danced was during a visit to our friends' Bob, and Jennie's house a few days before she was born. Bob and Jennie got out their fiddle and guitar, and suddenly there was rhythym in my womb.

The first time she heard live music outside of the womb, was when we visited Bob and Jennie's and they got their instruments out again. It was one of the first times in Washington that we felt really at home--a moment when we realized we had good, true friends.

Since then, Carolyn--all of us really--have had a softspot for her "Uncle Bob." Everytime they would come to visit, or we would go see them she zeroed in on him. Something about his smiling eyes and soft voice just appealed to her. At first we thought it was his handlebar mustache that caught her attention, but when he had chemo and lost all of his hair--including that mustache--she showed us otherwise.

In the last few weeks, despite Bob's deterioration, Carolyn has had this same connection. The last time we saw Bob, Carolyn locked eyes on him and gave him her biggest smile, and Bob, though disoriented and in and out of awareness saw her, broke into a huge grin, raised his hands and clapped. They had some special moments that day.

Bob died this afternoon at 4 p.m. He was a man with a gentle voice, a quick smile, and a musical laugh. He loved to play his fiddle and was the true compliment to his beautiful wife, Jennie. He had a strong faith--especially in these last few months. He was a good friend.

We miss him very much already.

Battle and Fighting Terminology

The metaphorical terminology that surrounds cancer is vast. One image that seems to come up again and again is the idea of it being a battle or a war. People are said to fight valiantly against it. People are called fighters, warriors, soldiers.

When my Mom was sick, and then when she died I hated the phrase, "She lost her battle." It just sounded so defeating. It sounded like the cancer won and that just... shouldn't be. I didn't know what else to say though, so I found myself using those words.

Not long ago, a dear woman on my message board brought up that very phrase. She, too, had a problem with it. And she refused to say that anyone lost their battle. Instead, she viewed it as giving their life in the battle. She refused to believe that whether she lived or died with her cancer that it could be the victor. She felt that either way she would defeat her cancer--either by going on to life abundant and everlasting and being rid of it forever in her death passage, or by surviving it here. Either way, she would be the victor and it would be defeated once and for all. That remarkable woman gave her life in the fight shortly before I left for Washington. I miss her wisdom very much, but I am happy that she has won her battle.

But other terminology that plagues me right now, that stings me more than it should, is the idea of folks being 'fighters.' Of 'having spunk,' and therefor faring better.

My Mother was the fightingest woman that I've ever known. She was the spunkiest, take no prisoners, tell 'em to F*** off kind of woman that you've ever seen. She was to me the embodiment of feminine strength. I felt that this would be one of her finest assets in her fight against Lung Cancer.

But, my mother's battle with cancer was a very short one. She gave her life in the battle only 8 months and 1 day after her diagnosis. Her decline was also very rapid. She didn't linger and linger and linger. She lost her awareness quickly. We weren't able to have those special meaningful conversations I think we'd all envisioned after we signed on the dotted line for hospice. What do I do with the 'fighter' terminology in her case? Am I to believe that my Mom was less of a fighter than others because she couldn't hold on longer? Did the beast just come on too fast and too furious--with strategy that would outsmart even the brightest and strongest warrior?

The thought that comforts me is this: In a war, I believe the man who gives his life on the first day of the battle is every bit as valiant, every bit as much a warrior as the man who fights the entire conflict and perishes on the last day. I have to believe that is true.

But still, sometimes the words haunt me...

And Then....

And then there are the times that you don't know what the heck to do to help....

And you don't know if your help is really helping or hurting.

See... I don't know much afterall. I think my last post still has some helpful nuggets in it, but even with having gleaned those thoughts I'm at a loss at how to support my friends now... and I'm wondering if the things that I *have* done have really been a help.

I pray that they have.

My Thoughts on Supporting Families When Time is Short Due to Cancer

After going through the "last days" stuff both as a primary family member/caregiver, and now as a friend wanting to offer as much support as possible to our friends now experiencing the bittersweet time of good-bye, I want to offer my thoughts on "how to help."

I want to say that I don't know everything. I've bumbled and fumbled on both sides of things. But I remember how I felt as a daughter watching her Mom slip away and I know what I've seen as a friend offering support and I have some general thoughts on how to really be of help.

I think a lot of this probably applies to all stages of cancer, but it is the journey of the last stages that has caused me to do this thinking and writing.

First of all--The words, "Let me know if you need anything," are truly some of the most empty words on the planet... Yes, I've used them. They are what fly out of your mouth because you really do WANT to help. The sticking point is that you have to put feet and hands to the words. Put a little action behind it. People who are dealing with terminal illness themselves or as a family member don't have the energy to call when there is a need. It's difficult to rally your mental capacities to a point when you can put things together enough to say, "Such and such said they'd help... I'll call them."

So instead of saying, "Let me know if you need anything," use a little common sense and figure out what might be needed. Bring over food. Our friends Sarah and Larry brought food at least once a week when my Mom was ill. Every week we looked forward to it. We knew that there would be non-cancer centered conversation, good food, friendship, something to laugh about, and a lot of hugs the nights that they came. It was wonderful.

Offer to clean--The last thing you want to do when your loved one is sick and time is limited is clean your freaking house. Laundry is a plague. Dishes are an abomination. They stand in the way of time together and they aren't very much fun on a good day.

At the same time, if the person you are supporting would prefer you didn't do those things, be sensitive to that too. Some people need to stay busy--need to clean, need to cook, need to feel like they are doing something to feel sane in the situation. Offering is a good thing, and make sure you really mean it. But if it becomes clear that this is something that isn't wanted, it might be best to back off.

Be a physical presence--the whole way through as much as possible. Don't be afraid to call. Don't be afraid to visit, as long as everyone indicates it would be welcomed and beneficial. Nothing helps more than a hug and a shoulder to cry on.

Don't wait until the 'last days' to check in and visit. I know, I know... You'll feel bad because you missed your chance and you have to take this one last time to see that person and say what needs said--NEWSFLASH--THE FAMILY needs that time. If you can be there to be of a support and it is WELCOMED by the family, then be there... but in doing so facilitate time for the family to be alone to say what THEY need to say. THE FAMILY AND THE SICK PERSON are the ones who are important, NOT YOU.

To add to that, I don't think there is anything quite as offensive to me as people who don't seem to care until the drama is at it's height. Cancer sucks all the way through. Having a loved one suffering with cancer sucks all the way through. It might not play like a T.V. drama to go over after the initial diagnosis and during treatment, and to be supportive when things are normaler and even a little bit cancer-boring, but you're needed then too. If you don't show up then, you prove your lack of salt as a friend. Then there's nothing but motives to question. And from where I sat as a family member, that hurt. A lot.

That said, sometimes it is helpful to have a hand to hold as you sit at "the watch." Sometimes what you need is a person to sit with you and your family member and be quiet, to hug you when you break down and realize that your family member can't hug you back anymore, and won't ever again. Again, follow the lead of the ones you are supporting.

This is something that is important in all parts of a journey with cancer, whatever the outcome: Don't just fixate on the cancer, or the prognosis. And at the same time allow people to express where they are without guilting them. This is a "follow their lead" area. Allow for venting about how much it sucks, or excitement about hair growing back after chemo. Do so by making room for them to talk about it. Sometimes a person needs to talk about their honest raw feelings about what is happening to them because of cancer. And sometimes, they need a break from that and want to talk about the latest Sale at Target and nothing more pressing. There is a balance that can be found between talking about things that aren't depressing and/or cancer related and allowing a person to talk about where they are. Be sensitive enough to find it. Usually it comes down to following the lead of the person with whom you are speaking.

Know when to butt out. I suck at this sometimes. I do. I want to help so badly and I feel so much better when I am physically doing something to support people I love that I can be overbearing and TOO present. But this one really is key. Ask--"Do you want people here? Is this a help to you?" And if you get the sense that company is overwhelming for the person who is sick or for their family get the hell out.

I guess what it comes down to is this--Realize that the time that a terminally ill person has left is precious. What is happening to them is all about them, and all about their family. Anything that you can do to maximize and enrich the time that person has with those closest to them is a help. Anything that takes away from that is not a help. It is, to be quite blunt, a burden. Above all, follow the lead of the individuals whom you are supporting.

So that's the Val primer. I don't claim to know it all... but this is what I've felt from the seats that I've had in loving people dealing with this disease.

Keep Praying for Bob

Please keep praying for my friend Bob. He has been moved to a nursing home. This makes me very sad.

Life Today...

I've been thinking the last few days about how I feel like a totally different person than I was three years ago, or five years ago, or one year ago. I am a new person. I am a Mom now. I am a girl missing her Mom now.

The last two years have taken me to the heights of joys I'd never known and to the depths of griefs I'd never imagined. I've learned to feel suffering. I learned to watch suffering. And now I enter even further into the suffering of others.

A close friend of ours is nearing the end of his battle with cancer. He is about to give his life in the fight. I stagger at this--at seeing it again, at feeling it again, at knowing that people that I love are having to feel the devestation of the beast that is cancer.

I am learning here. I have learned here and from all that has come to me in these whirlwind months. But I can't articulate the lesson. I can't tell you how I'm different. I can't tell you who this new person is. I'm not sure I recognize her. I have to get to know her a little better.

All I know is I step forward into life each day a different person. I'm trying to assimilate the happenings of the last two years into who I am now. I'm trying to learn the steps of a new dance. It's scary, and hard, and leaves me quiet.

But I will continue the journey and I will try to share the story of it as much as I can. Because there is power in the telling of our stories.

Please pray for my friend Bob, as he finishes this journey and begins a new one. Pray for his wife Jennie and their family.

And pray for me as I make sense of who I am now and as I assimilate all that has been into who I am now and what now is.