May 162006
 
I wrote that last entry about Cancerbaby’s death on the fly. I actually wrote it during a quiet moment at work.

It was a strange day, that Sunday. I really had been fully prepared to have my knees knocked out from beneath me because of the whole Mother’s Day-ness of it all. Learning that Cancerbaby had died was sort of like getting sucker punched. But that’s not completely true because I knew she wasn’t at all well, and that things were coming to an end for her. Still, I held on to hope for her.
I spent the biggest chunk of Sunday at work, and I thought I was sad but basically okay about it.

And then I left work and I started to unravel. I have to say that I did a magnificent job of unravelling.

Today, most of what I feel is confusion.

Several folks have stepped up and have tried to be supportive while I sob or go catatonic. There are so many layers and so many ways I feel bad in this, I don’t know where to begin.

I feel this staggering degree of grief for Mr. Cancerbaby. I try to imagine how he puts one foot in front of the other and I realize that I can’t comprehend what he must be feeling. There is a big bruise on my heart for Mr. Cancerbaby.

And I feel sad and horrified that someone who was so smart and eloquent and so young and who went through treatment at more or less the same time as me got the crappy bend in the road.

Mostly, I am numb and confused and I keep thinking that this should never have happened.

One of the few things that is a good thing in all this is how all the OVCA bloggers have come together and passed the word. I feel like everyone is trying to do whatever sort of tribute makes sense for them.

I dunno.

I remain stunned and saddened, and mostly I just think it is such a spectacular waste and that it is so very wrong that she is dead.

6 Responses to “Flags at half-mast”

  1. Fi Says:
    It isn’t fair at all …
    When one thinks of all the good people that die and the terrible people who go on.
    It isn’t fair, it isn’t right …

    Thinking of you Spike.

    Love
    Fi

  2. tara Says:
    i just got back and am catching up on reading folk’s blogs. i’m sorry for your loss (which doesn’t really capture what i want to say, ya know?), cancerbaby sounds like one hell of a woman.
  3. Liz (suburban girl) Says:
    Cancerbaby’s blog was gutsy and honest. She left her mark on the world, and on me. Here’s to you, Cancerbaby. I wish you were still with us.

    Rock on, Spike
    Suburban Girl

  4. cb’s friend Says:
    Email me if you want to talk.
  5. Amy Says:
    I found you via Cancerbabys blog and damn you if I am not reading your blog from day ONE. You rock. Greetings from Chilliwack BC
  6. another friend Says:
    Spike, I understand the loss. I am looking to be in touch with cb’s friend, know how I can contact them? Thanks….
 Posted by at 4:05 am
May 142006
 
I thought that if I wrote a post today, it would be a little nudge to remind everyone to call their moms.

And you should still do that.

And I just read Cancerbaby’s blog, and, well, she died on Friday.

She was 33.

Thanks for helping me with my journey, CB.

Happy trails to you.

3 Responses to “Adios, amiga”

  1. jawnbc Says:
    I’m so sorry Spike….
  2. Vicki Says:
    She was such a gifted, wonderful writer. She will be missed not only by her real family, but also by her online ovca kin.
    Peace, Jessica.
    Thanks Spike.
  3. Fi Says:
    I have no words … it is so sad …

    Hugs Spike

 Posted by at 9:35 am
May 092006
 
Well, I wrote a post the other night, all about how I went to work the other day and realized well into the day that it was the 2 year anniversary of my OVCA diagnosis. I wrote about how that was kind of weird. And how it also felt a bit like a non-event, and how *that* felt weird. Because, hell’s bells, a whole lot of crap and good stuff has happened in this last two years. I guess I expected to have a larger emotional reaction to it all.

So I wrote a post about that, and it felt not completely spot on, but I posted it anyway.

And then we had a server crash and everything that happened on the website since the last backup of the site, well, that stuff went to the abyss of lost text that exists somewhere in the ether.

So, two years. Holy cow, eh?

Lucky me.

And I do mean that. I know that I got a really good deal in a really crappy situation. I have no guarantees that I won’t have a recurrence. I only have the good thing where the longer I go without a recurrence, the more likely I am to be able to avoid having one, statistically speaking.

Fingers crossed.

That said, I want to talk about the whole crazy world of blogging about having cancer and what that is like.

See, at some point in the past Louise found my site, dropped me an e-mail and asked if she could link her blog to mine. I was delighted to have been hooked up with someone who could understand all the finer, agonizing details of the OVCA ordeal and said “sure thing” pretty dang quick.

Through Louise, I  hooked up with several other women, all of whom were doing their part to dropkick ovarian cancer. One of those women is Cancerbaby. Cancerbaby is a brilliant writer, and, I suspect, a brilliant woman. She hasn’t made many blog entries lately and now, things are going rather crappily for her. And I feel very, very bad about that.

My girlfriend, in her great wisdom, has a belief that people you “know” through the internet but have never met in real life are “your imaginary friends”. The one exception to the imaginary friends rule is the women I have connected up with through our ovarian cancer blogs.

So Cancerbaby’s circumstances have become awful, and I feel awful.

At the same time, I know some part of what it is like to be terribly, terribly sick and how you know that most people actually can’t actually comprehend what you are going through or how wretched you feel. And on that level, I know only a small speck of what Cancerbaby is going through. And while I am grateful for my ignorance, I am very sad that someone I feel that kindred connection with is suffering and having to fight so hard. I am sad that someone has to feel even worse than I did, and to know that she has been feeling worse for quite a long time.

I wish I had some upbeat note I could leave this on, but I am coming up short on that score.

Please send whatever sort of kind and caring thoughts you can to Cancerbaby.

3 Responses to “Comrades”

  1. Fi Says:
    Spike,

    Holy cow, yeah.
    My fingers, toes, eyes, legs, arms … all crossed.

    Anniversary’s are all a bit strange … you never know what to expect and how you might feel or if the day will just go by like any other day … it is all a bit strange.

    While our journeys are very, very different, I hear so many things in your words Spike, that reflect feelings, fears and hopes similiar to mine. Your words cause me to think, reflect, feel and connect with my own “humanness”. That is a very special gift, it helps one shine the light on more dark corners of their own experience and the illumination, although uneasy at first, ultimately can make these corners much less scary.

    Sending out light and healing love to the universe.

    Fi

  2. Vicki Says:
    I was going to respond sooner but just the mention of CB kind of immobilizes me. I feel so bad for her and her family… and then I feel so bad for all any of us with ovca… we live waiting for the other shoe to drop. And yet, reading all our wonderful blogs, thru the highs and the lows our lives go on.. and our lives are fantastic.
    Keep on posting and being your edgy Spike self, gives me alot of LOLs.
    thank you
    Vicki – and my dh, I read almost everything to him.
  3. Gimpy Mumpy Says:
    Hi Spike, I’ve just found your blog and thought “wowie, my 2 year anniversary of my totally screwed up, traumatic spine surgery is next week, how do I celebrate this year?” The problem is that on the one hand I don’t feel that I’ve made much progress physically in the 2 years since the surgery (even though I practically live at the rehab department at the hospital). But then I think about some milestones along the way (this post comes to mind: http://mumpy.typepad.com/gimpy_mumpy/2005/12/the_living_room.html) and think ‘hey! I this deserves a celebration! Right?’

    Hope this message finds you well.

 Posted by at 3:39 am
May 022006
 
Mother’s Day is fast approaching and with its approach comes a whole whack of crap that has been stuck in my head for, oh… about the last two years.
I am apprehensive about posting this and to some extent, I envy the OVCA blogging amigas who can remain anonymous. I think there is a lot that can be gained from that. But my blog is only semi-anonymous at best. But I think it’s time to just say some stuff that has been, well, you know, torturing me for the last couple of years.
And if you feel compelled to make a comment on this post, try to be kind, eh?
I’m just talking, I ain’t asking for anyone’s advice.

Part one of the whole David Copperfield thing of me and ovarian cancer goes like this, in a nutshell.
A bunch of doctors decide I need surgery.
I say okay.
Meet with surgeon who says,”Yes, let’s cut you open.”
“Okay,” says I.
“Unfortunately, the nurses are about to have a job action, check back when that’s all dealt with, eh?,” says he.
Nurses strike ends on a Monday. On the Friday of that week, I am in the hospital, in the first of many ugly blue gowns that really show off my ichial tuberosity.
Anyway, here’s the punch line you all have been waiting for. Doctor says, “Hmm, cancer. You’ll have to do this, and this, and then this. And this is a new doctor, go see him.”
Actually, my surgeon was great. I think my circumstances would be way different without him.

All this shite happened on the Mother’s Day weekend of 2004.
That’s how I remember when it all happened.
Lance Armstrong says he doesn’t celebrate his birthday anymore. Instead, he celebrates the day he was diagnosed with cancer, because it did so much to make him get off his ass (?) and do more with his life (?) and make the most of every day. So, for my buddy Lance, who I do actually hold in high regard, being diagnosed with cancer and everything that came from that was a good thing.
My own personal feelings on the matter are a bit more ambivalent. (But then, I didn’t invent those little yellow bracelets, did I?)

But the day is approaching and, at the very least, requires a bit of reflection on my part.

The second part of my David Copperfield OVCA story goes like this.

This is the part that I don’t actually talk much about.

Mother’s Day is also the time when we are supposed to pause for a while from the crazy pace of our crazy lives and give some attention and love and admiration to the women who birthed us.
Now, it’s my understanding that Mother’s Day was originally a day of political protest, when mothers rallied to protest their sons being sent off to die in the World Wars.
And then Hallmark got ahold of it and neutered (spade?) it and it became about carnations and breakfast in bed.
But I digress.

I think almost every mother deserves *at least* a day a year to get the reverence she deserves.
And I would be happy to steer some of that in my mom’s direction, but that’s a bit of a meaningless gesture these days.

My mom has had Alzheimer’s for several years now, and by the time of my diagnosis, really couldn’t be left alone in the house. As a result, my mom never knew that I, the youngest of her kids, had this god awful disease. My mom has no idea who I am when I visit her and can no longer put sentences together.

I think very, very highly of my mom. As much as she contributed to the ways I am neurotic, she also contributed to the ways I attempt to be fair and ethical and trust-worthy. She taught me that racism and anti-Semiticism were wrong, way back in the early 60’s. There were no other caucasian people around me who said things like that, or dared to say, “That joke wasn’t funny, it was cruel and racist.”

She spanked me too often. She taught me that it is important to be polite. She was, more than anyone else I am related to, interested in ideas and how the world was changing, and she was always excited when I got to experience something that hadn’t been available to her when she was my age.

Of her three kids, I was the one who was the least like her in many ways, and yet when I grew up a bit, I always had the feeling that I was her favorite.
And in a weird way, I could also see ways that my brother was her favorite. And the ways that my sister was her favorite. And all of that was really nice. To get that groove that she ended up really liking all of us, in different ways, but liking us. That was great.

In short, I miss my mom.

I miss my mom pretty much every day. Something comes up, and there is an ache in my chest and I miss her.
When I was diagnosed, there were times I wished she could *know* and be my mom and do the mom thing and try to make everything okay.
And, in my less selfish moments, I was kind of glad that she didn’t have to know that her baby was in this dog fight with cancer. Because it would have broken her heart and there was nothing she could really have done to fix it, and so maybe it was really best that she never had to know.

So, Mother’s Day is looming and I always feel like I should *do* something around all that and all the various layers involved in all that.
I expect what will happen is I will go to work and come home and probably spend the night hanging with myself, trying to make it all as normal as can be.

I guess I will let you know once I have done it.

And to you all, don’t forget to call your Mom. I’d consider it a personal favour.

10 Responses to “Mother’s Day.”

  1. Sheena Says:
    Your words always touch me – you make me smile and laugh and think. This time you made me cry. OK, it’s not the first time I have cried reading your blog, but I get how you’re feeling.
    Mom stuff goes deep – deeper than we know until it’s gone from our lives.
    I think you have *done* something around Mother’s Day; your words are a beautiful snapshot of your Mom.
    Thanks for sharing.
  2. Dreamer Girl Says:
    Your story is very touching and sad and I kinda know how you feel but I’m not saying I do completely though. I was adopted when I was three and so I havn’t seen my birth mom or dad at all for ten years : (
    I hope you are ok and dont ‘t ever forget the good times you had. I’m sorry you have to go through this kind of thing every year during Mother’s Day. I dont know wha much else to say, again, hope you ok
    : )
  3. Spike Says:
    Sheena, my friend, thank you for your support. It matters mucho coming from a gal like you, and knowing that we both know what this sort of heartbreak is like.
    I appreciate that quiet understanding,

    DreamerGirl.

    Thanks for your kindness. I appreciate it. And I’ll be okay. On some level, it feels like huge progress to just admit it out loud or online. I confess, this is about the most I have been willing to say about it in either medium.

    I suppose the other detail I neglected to mention is that my mom has always been the family historian, so could maybe have provided a bit more depth to some of the cancer questions.
    So it goes.

    My hope for my mom is that she actually is lucid underneath it all and she has decided that since we treat her like a gabbering id-jit, she will adopt the mannerism of our crazy-ass gibberish tribe, probably as a courtesy, but under the surface, she is just still as smart as ever, watching her PBS and Knowledge network shoes. And even that crappy Oprah.
    It’s freaky to wonder where the brilliance went. Is it still in there, tired and buried under the worn out grey bits or did it begin to erode and wash away with each shampoo treatment? Or is she just wishing we would get it and that we and the medical profession would stop drugging her into oblivion.

    I could go on and on and on. But I will leave it at that.

  4. pat Says:
    Although I am in Ca and my Mom is in CT, in the 19 years I’ve been here we talk almost every day. Even if its for a minute. When I was diagnosed with my OVC and going through chemo, one of the worst things for me was how very much it affected my mom and how much she was hurting for me.
    She is getting older and not very strong physically and the last few months it seems like there are more medical issues. She has never complained if she was hurting herself, only about others. Now once in awhile she will admit she is not feeling well and it just breaks my heart. Especially being so far away. I do see her one or two times a year, last year she even make the long trip here to be with me.
    So, I can understand in a different way, what you are saying. I will be sure to call my Mom with a special call on Mothers Day and I will also say Happy Mothers Day to your Mom from my heart.
    Hope the day goes ok for you.
  5. Jennysue Says:
    Spike, you have me all choked up. You actually made me feel guilty, because there were many times during my course w/ cancer that I wished my mom hadn’t known about it because she was soooo overhwhelmed by it – and therefore overhwhelmed me. But hearing your story, and how you could not tell your mom – I realize that it was wrong for me to think that and I should be thankful that I was able to have her be there for me. My grandmother has alzheimers and I know how hard it is to deal with. But this mother’s day I will make it a big point to make sure I express my appreciation to them both. Thanks for making me think about this – I’m sure your mom would be sooo proud of you if she knew how strong her daughter is.
  6. pat Says:
    Jennysue, At times I though I was the only one who had a mom that was so overwhelmed with my time with cancer and also wished at times that she did not have to know. I know what you mean about being overwhemed because of you Mom. It’s so good sometime to here that we’re not alone in our feelings.
  7. Dee-Dee Says:
    I hope you’re able to spend mother’s day remembering all the good things about your mom…
  8. Sirenia Says:
    Consider it done! This is my second attempt to let you know that your favor will be done by this daughter of a woman who has ovarian cancer. The first time I read this post I fell apart. I dread the Mother’s Day I won’t be able to spend with mine. I agree with Sheena: you have done something just by expressing your love.
  9. Spike Says:
    Thanks.

    And also, we had a little server crash and anything that went up during that chunk of time, well, it came right back down.
    Including a post of mine… which is fine cuz I wasn’t sure I liked it anyway.

    Thanks for trying twice, and say hey to your mom from me.

    Spike

  10. Theressa Says:
    Spike, I’ve been following your “dog fight” with OVCA from nearly it’s evil inception. Every once in awhile I check in to see how you are faring. I love to read your words, they are lyrical and magical and emotional and they make me F****** FEEL! I love that even when it hurts. And this posting hurt. I hurt for myself, I miss my mother too. You, though have the hardest road to walk. I have the luxury of missing a mother who is phsycially dead. I know the words are a bit strange. Using “lurxury” to describe the state of my mother’s existence but it’s true nonetheless. I can’t imagine missing an integral part of your being as if she’s dead yet is she is not. My thought on this….maybe your Mom has trancsended to the next level of human existence and language and she’s just waiting for the rest of us to catch up and catch on! I will remember you the next time I feel like wallowing in pity and missing my mother. I have the comfort of losing her quickly and peacefully, truly I have nothing to complain about. You keep strong. Your courage and my mother in-law’s courage (she died after her 2nd bout with breast cancer) has inspired me. I have been training to take part in the Susan G. Komen Run/Walk for the Cure here in Northern California. It’s coming up this weekend I’ll walk for her, I’ll walk for you and for the struggles you’ve endured while battling against and winning over cancer!
    My Love to you Dear!
    Theressa
 Posted by at 4:06 am