Saturday, January 30, 2010

the 'what if's, big C, and a quarter inch of thumb

A friend, never met, was buried today. He was a stand-up man, who believed in walking down to see someone to let them know that talking to them mattered. Some times you have to go seeking the answers. He mentored Linda, helping her to become the manager that people wanted to work for. He knew people, because people matter, and when figuring things out, it was out with a piece of paper and writing it down. Get it down, don’t forget that these are real things, real numbers, real problems.

He had a ‘let’s have a walk’ with Linda about me, when management was less than compassionate. He told her that when his wife had cancer, he decided not to miss a single doctor’s appointment. That how you live a life, and how you live with yourself.
He died of cancer a week ago. He was a sturdy man, and helping or caring about others never diminished that, it enhanced it. When Linda was worried about work and needed the big picture or what to do, I wanted her to go to him: he never had advice other than the best in her long term.

In a few days, another friend goes into surgery, the big C again. A year of testing to determine it was Lupus. Oops, no, turns out it was Cancer and spreading. I know the doctor who is doing the surgery and he is professional and exceptionally trained. One of the three specialists I trust. I’ll go visit in the hospital. The person said the one thing no one lets you talk about are the ‘what if’s’, that and how there are those who say, “I can’t take illness” as an excuse to run away and those who stay, “If you ever need anything…” before you never hear them again.

Cancer is never pretty, and I am not sure if it is survived or simply carried on? Chemo, radiation, operations, you might be able to go back to looking the same but the world will never seem the same, a place where the silent fears don’t whisper in the dark before sleep.

I have been out of it for a while, sleeping three times the amount I am awake, and still fevered. Today it was seizure cycles a and stroke build up, blood pressure 205/193 with heart rate of 128 (if you see this, go to a hospital) before dropping to a ‘safe’ 188/140 (yeah, don’t need to worry about clotted cream every day for tea – I jest). I had a lot of seizures, and felt like my ear and head was going to explode. But I’m here. I’m taking some DVD’s up to my friend in the hospital, to take the mind from the noise and the pain. Some romance too.

This morning I scraped the clotted blood on and in my tongue. It stayed. I had bit the tongue tip in two places during my sleep in seizures, maybe took a tip off. That’s not a ‘What if’ that just a ‘is that chocolate?’ to, ‘oh crap……oh well.’ No one wants to talk to Linda about the nights holding me from banging my head and limbs against the wall, and how she can’t shield all of them. Or what it looks like, or sounds like. I don’t know that.

Last week I had a seizure and Cheryl was there, she held my hand. I don’t know if it was the end, the after, the pre, the whole thing, I just know I couldn’t see and I couldn’t move anything but my right thumb a quarter inch. My whole world was that quarter inch. Was it Cheryl’s thumb? I felt hands that worked, thick hands which spent too many winters on the prairies, I know that feel. There were hands that have old calluses, wood I think, and new ones building and the wearing that will turn them some day into that fine leather, safe hands. Every ridge was my security blanket, every indent a place where I connected to the outside world. After a time she took it away to check me, I think, and I moved my thumb, moved it as much as I could but the hand didn’t come back. Damn. Slammed backed into a body in which the pain which comes from parts is so twisted it is hard to not think of myself that way, like something bounced off the front of a car.

The hand mattered. Feeling it mattered. The little differences ARE the big differences.

Love is what I felt in Cheryl’s hand. Love is what I felt in Linda’s voice when talking about the man buried today. Facing surgery, a suggestion of a laptop, earphones and DVDs, brings the question, “Where has all the caring gone?” and not from me. I dunno, when facing surgery, it is good to know that someone who cares is on the other side. And while we were working on how to help them, they were offering suggestions on how to help us. Like to like.

I wanted you to know that even to a person, unmoving, eyes rolled up or down or both with only a twitch of a thumb, holding a hand can make a great deal of difference. There isn’t just ‘What if’’s for those facing a dance with Mr. D. but for all those who know them. And running, however graceful, is still running. The man buried today made a difference when Linda and my life needed it. And I think he did for a great many people. He wasn’t scared to help to deal with the what if’s.


yanub said...

A beautiful eulogy, Beth. What a dear man, dear friend you and Linda have lost.

The caring is what matters, and not being there is always noted and remembered. And thus, I am off soon for a visit this morning, so must make this short.

Neil said...

Hugs to both of you, Linda especially, on the loss of such a fine person.

"What if" is a lousy game sometimes; especially after a car crash. What if I'd taken a different street, or turned when I intended to? "What If, the future version" is also something that we are still avoiding at our house. Beloved has had one chemotherapy treatment so far, and is starting to feel a few side-effects, but she's functioning almost normally except for needing to - oh dear - rest a lot.

Hands are good to feel. Medical people should learn that sometimes. There are occasions when some doctor's doing something barbaric that a nurse just holding a hand would give more support and reassurance than they'd believe.

Hands make a difference. Postcards are like hands - they make a difference too. You make a difference, Beth. Thank you for being you.

Much love and many zen hugs,

FridaWrites said...

I'm glad to know a hand helps--that was about all I could do for my grandfather. I know Cheryl's care means a lot to you.

I am sorry that Linda's friend and mentor died--he had his priorities straight, and I'm glad he was there for her too. I somehow didn't realize when I was reading last night that he was the one who died.

I'm glad you are there for the woman with cancer, too. So many people run away so fast. It's just a changed world, and people didn't raise our generation to care for one another, I guess. It just makes me shake my head in confusion.

Lorna said...

Beth, I've sent you an email.

Lene Andersen said...

That's love, isn't it? Not being afraid to talk about the dark. Or maybe being afraid and talking anyway.

I am so sorry for your and Linda's loss of a mentor and supporter. And for your friend who finally got a diagnosis (seriously? a year without a diagnosis?). This year has gotten off to a rough start for so many.

And yes. Love. That hand, that touch can give you a lifeline.

SharonMV said...

Dear Beth & Linda
I am so sorry for the loss of your friend. Please give Linda my condolences. He sounds like a remarkable man. I am glad that Linda had him for a mentor and that both of you had him in your lives.

I think your friend in the hospital will appreciate your visit very much. Maybe your turn to hold someone's hand.

I wish I could be there for you & hold your hand when you are having seizures & fighting against the darkness. I could spell Cheryl, so there would always be someone hanging on, holding fast. All I have to send you are these words, my love for you. My voice is small & distant but it calls your name.


Vanessa said...

Firstly I am very sad to hear of the loss of Linda's mentor and friend. There aren't enough good, caring, people in the world as it is. I'm also praying for your friend that is going into surgery that they may make a speedy recovery.

Secondly it is a sad, unfortunate, element of the human condition that we fear illness and death. It happens to us all but many of us shun those that need our love most especially in their time of need. Many people fear what illness represents, our own ultimate demise. Some people can't handle watching but not being able to "help". Most don't understand simple love and compassion are medicine when there is no cure.

I worked in the care industry for many years and understand dying and the need for compassion. I watched as people's own children ran in terror while unlikely people stayed on (like someone's neighbor).

I wish I had found your blog sooner. I don't know the you of before, I know the you now, and I believe you need more love, compassion, and choice. I'll try to help with all three as much as I can. I'm praying for the strength of you and your family.

Baba Yaga said...

I'm sorry you've 'lost' a friend (but glad to hear he was a friend). He sounds a rare sort.

& I'm wishing your other friend safe & successful passage through surgery.

Your description of what you felt in Cheryl's hand is pure poetry. (I've *sort* of had the "I couldn’t see and I couldn’t move anything" experience - sleep paralysis. That was nasty enough, but once one *can* move something - usually a finger - the quarter inch, it's over.

& yes, the little differences are the big differences. I think it's a gift to know that, 'though it seems often to come at a price.

I have a letter half-written to you in my head. It seems to have stuck there, but I'll try to get it out after some sleep.

JaneB said...

I am so glad you have loving friends who can be there for you physically.

And there's a real bitter-sweet about a death when you can be so grateful for having had the person in your life and yet so sad they're gone, isn't there?

Love the coloured sky picture, it's beautiful

e said...


I am sorry for the loss of Linda's friend and mentor, and I hope that your hospitalsed friend has good support. I know your effort will be appreciated.

Sending you both hugs from afar,


Raccoon said...

Condolences. And hopes of a successful surgery and recovery.

A misdiagnosis, of that nature, for a year? A good thing it wasn't a fast spreading.

Head pounding, blood pressure wonky, fevers and seizures. And even without a sense of touch, knowing that someone is holding your hand...

Donna Lee said...

He sounds like the person we all want to be there for us and the person we'd all like to be. Holding someone's had is something that should never be underrated. Being able to look illness and it's affects in the face of someone you love is such a gift to give.

Victor Kellar said...

He sounded like a hell of a guy. Pass on to Linda my condolences. I have a guy like that, that no matter what, he'll tell me what is best for me, even it it hurts, the guy I can count on, he happens to be my eldest brother

Yeh, hands are good. I'm verbose, I'm good with words, I'm known as a story teller but when someone for whom I care is hurting, I feel more power in touching, of being there, of just listening instead of talking. The being there is the most important thing

Right now a person very close to me, my brother's wife, who I've known as long as he has, is going through more cancer. She is strong, she may be the smartest person I know, outside of Collette, so what I do is to be there for her, just be there. We don't say a lot to each other, but I know it matters

cheryl g said...

I am sorry for the loss of your friend and Linda’s mentor. He sounds like a wonderful person and I am glad he was there for Linda in that toxic work environment. If there is anything I can do to help your other friend (J.) don’t hesitate to ask.

I am so glad your blood pressure came down although the second reading still isn’t very good. I wish with all my might that I could spare you the pain and seizures. There are times when all I can do is hold your hand. The EMT in me wants to act, to help but in those times where there is nothing I can do but wait I want to be holding your hand and giving you that comfort and that connection. I am glad you felt the love I have for you.

I have learned so much from you about being there, about not running, about listening. Yes, I am scared but MY fear isn’t important. Being there for you, for another human being to help them feel less alone and less afraid is far more important than my fears.

rachelcreative said...

It does matter. Thank you for saying it.

FridaWrites said...

I hear you on that, Neil--I really wanted someone to hold my hand during my last procedure without sedation--but was too afraid to ask. It really would have made a difference and kept me calm.

Elizabeth McClung said...

The city is less of a place because he is not in it. Linda and my life is less because he is not here. I don't know how else to express it.

Raccoon: thank you.

And yeah, I try not to get angry and shout think like, "What, did you not ever look at the White blood cell count!?"

Also, maybe you can help me with this; the neurologist said there are five nerves each of increasing size going to an area. So, while for instance, I don't feel pain if I smash my thumb, or hot or cold, or if I really smash it, I might feel something for a half second or less (like run over it with a car), and some parts feel nothing but something like a depression in the skin or the resistance against movement, like a callus, I can feel, but only in some parts. Mostly, I am so used to deducing things that I think I am feeling things like most people. Because the nerves themselves are destroyed, not the connection in the spinal column (though I assume those were being destroyed in some capacity too from the MRI), there is a mix of the 2 or three types of nerves. For example, I type every day to 'lock' the motion of touch typing even if slower, as the Everest Hospital recommended. However of the parts of my hands that touch the keyboard, one thumb and seven fingers have mostly the pressure sensation (two of the fingers lose that when fatigued).

So yeah, holding hand helps. It is same for you? Also since touch is sometimes pain, depending on where they touch, it hurts, not the hands though, well except the bones.

Yanub: Thanks, he was always a guy, doing things in his guy like way, notes and probably humming, phrases and old style manners, but friendly without smooze, and mentoring without the need of feeling threatened. I hope the visit went well.

Neil and Beloved: I hope the chemo is effective, I don't know if I can say 'hope it goes well' as chemo going well is sort of like saying 'have fun at the dentist' - having poison dripped into you to the point where it is hoped your body recovers in that area before dying is a taxing experience. I hope there are DVD's to watch and ginger ale and gravol for the nausea.

Frida: I think maybe people want easy answers and illness has no easy answer. The money spent on care, or on ways to bring quality of life are a fraction spent on the 'quick fix' - the machine that will tell if this cancer is 20% more likely to be malignant is 50 million and they buy two, but there aren't any night nurses to help patients to the bathroom.

Lene: I am no longer surprised in this city with wrong diagnosis or slow diagnosis, only surprised when people are actually treated and helped. It seems everyone is on a waiting list for someone.

Being afraid and talking anyway. I was scared every time I went into ICU, and terrified to look at where the surgery was done, but focued on the person, the words, maybe I was lousy comfort but I was there.

Sharon: having someone there during a seizure is important, it makes the unbearable more bearable. I know now why people who have 10 grand mals a day or 40 end up cutting out parts of their brain, and why that isn't the least bit scary. While for many it is terrifying. Having your body rip and contort is terrifying, but to have someone who won't run away is a blessing.

Vanessa: Thank you.

Yes, there is a whole, What can be done, and the times when there is no quick, roll up the sleeves fix, most don't have the patience to realize, that the older person who is blind and lonely from church is still blind and lonely five years later, though the first year visited 10 times, the second 5 and then it trails off to nothing. We get no results so we stop trying. When the results are not visable, at least, that's been my experience.

Elizabeth McClung said...

Baba Yaga: Yes, learning how the little things are the big things is something learned only through experience sadly, and usually not a fun one at that.

I wish people would stop dying, honestly. I am in my 30's and have know more people die in the last two years than fingers on my hands. It is....hard.

JAne: Yes, to know they were important, and remember that, and yet realize that is all the memory to have.

wendryn said...

This is a beautiful way to remember someone dear to you. I wish you didn't have to lose him - he sounds like a great person.

I'm glad you have Cheryl and LInda to hold your hands when it gets too hard.


SharonMV said...

Dear Beth,
I will hold my little black carved box tonight & think of you. I can feel the carved images & remember that you taught on Queen Charlotte Island and how you chose to share that story with me, sending me such a precious gift. I treasure the gift and the more precious gift of friendship.

I sent you a little something, Dennis just mailed it for me. I hope my previous package has arrived.


Olivia said...

So sorry for your, and Linda's, loss of that good friend and good man. Yes, caring, and being there, in small or big ways, does matter. Your description of Cheryl holding your hand is perfect. It shouldn't be so hard for people to do these things for others, but the fear is so powerful.

Diane J Standiford said...

What can I add? I am sorry for our loss, we all lose when a good person dies. During the '80s and AIDS it seemed like someone good died every day. The greatest gift when I had cancer was not that my love was there, but that she would always be there, all my life. I hope you have that same "feeling" from your love. (Most of my body is without true feeling, MS took that away years ago.) Wishing you peace tonight.

Raccoon said...

I don't know about the neurology/biology of it. What I do know is that there seems to be "surface" nerves, "muscle" nerves and "bone" nerves. These are my own names and thoughts, I don't know what the official names are.

As a SCI-C5, I have control of my head, neck, shoulders, and biceps. Triceps come in at C6. I have full skin sensation from my head through my shoulders, and about half way down the arms. I have "muscle" sensation down through my thumb, index finger, and a half of the middle finger next to the index finger. What I mean by this is that I can feel some pressure. For the pinky, ring finger, and the outside half of the middle finger, I can't feel anything.

On my torso, it's very similar. Full sensation from my head to my nipples, muscle movement for another inch or so, then nothing.

Which doesn't explain why I feel aches or pains or tingling in my legs and feet.

For me, for people with SCI, the nerves in the extremities are not damaged, just the spinal cord. And it might not be, really, physically damaged; it might just be lots of swelling that disrupts the connections. Which would be where incomplete SCI comes from -- some of the signals get through.

There's also something called "autonomic dysreflexia." This is where the signals from the body aren't getting through to the brain, and do a kind of feedback loop. Smashing my thumb, for instance. I wouldn't feel it, necessarily, but my body would, and would want me to do something about it. So, A.D. would kick in, raising the blood pressure, lowering my heart rate, start sweating, etc.

This is possible because, in a SCI, it's just the blockage in the spinal column.

And with all of this, I think I answered your question, although it might be more information than you were looking for...

Dagny said...

thank you.

I held my dad's hand in the hospital the last time I saw him. For hours. I can still see his giant hand and my smaller one. I hope he felt me there.

I'm so sorry for the loss of such an important person to you both.


Dagny said...

and just an aside, I mentioned to Mr. Dagny the other day while driving around that we were in fact OUT of the wedding crowd..and now entering the funeral crowd. Not a happy feeling really.....