Apr 252006
But I will valiantly push on.

I don’t want to do anything that might diminish my rep as a miserable old ratbag, so I worry what the cost may be if I post that things have been pretty downright dandy lately.

For one thing, the weather has taken a lovely turn for the summer-ish side of things, and while it certainly isn’t summer yet, I am happy to sit through the dress rehearsals.

And I had a realization just the other day that a year ago, I was in Kaua’i with my sweetie and a couple of really good friends and I had a spectacular time. Which got me to thinking how great it is to go swimming with tropical fish, and also that things have certainly been hard over the last couple of years, but there have been some really wonderful chunks of time mixed in along the way, too.

Over the last year or so, a lot of my stress has come from ongoing medical issues with my family, and while none of those situations have had a wild and Disney-like recovery, and they never will, none of those situations has gotten any worse recently, and that’s a bit of a relief.

And last week, I wrote my last exam for that semester. And that feels like a great relief, even if I did have a moment of temporary insanity that caused me to register for two classes over the summer. I figure I can still drop them if my inner sloth totally takes over.

It was my birthday last week, and my sweetie gave me a Coleman stove, which is so great because I really love to camp and the stove I bought last year suffered from some defect that caused the pipe to erode and snap open. The pipe that carries the gas from the can to the stove. I came quite close to becoming the English Patient while trying to figure out why my stove, which was two months old, wouldn’t light. So, this year, Elaine bought me the name brand replacement and we shall be off in the woods in no time. And I love that idea more than I can say.

I have also spent a chunk of the last few weeks working in my old job, the job I had right at the time of my diagnosis/surgery. See, at the time I had the surgery, I really just thought that the surgeon would cut out the tumour, which I sincerely believed would turn out to be benign, and I would have 6 weeks off work, from May till July, and then I would go back and everything would be same old, same old.

Clearly things didn’t quite go according to plan. But I had only a couple of days notice before the surgery and and it was all a whirlwind. And after the surgery and nine months of chemo and the recovery from the treatment, I got offered a position with a new project that seemed less stressful. But for this last week, I have parachuted back to the old work site and there I am, just like nothing ever happened. Some people remember me, but there are lots of new faces. In some ways, it really drives home the point that the show just keeps on going and going and going. That helps me stay back at a healthy distance, I think.

But my point is, it’s been nice and it’s been interesting and, in some ways, it’s been gratifying to go back. It’s also nice to know that I have my real job that I will go back to. Still, it’s interesting to feel like I have been a part of something important.

And yesterday, I saw my friendly neighbourhood oncologist who said that my CA125 count is at 7. Elaine and I let out the breath we had both been holding for the last week, since the blood draw, and were giddy with the joy that comes from such news and also from connecting one’s lungs with O2 after such a long period of deprivation. Very, very happy about that news at my house.

And now it’s late and the alarm will go off way too soon, even if it is my day off tomorrow. And just a few feet away from me, my sweetie is sleeping and making sweet little sleep noises and all around her are the cats, and it’s all so sweet and right. So much sweetness.
I guess I am gonna lose some Eeyore points for this post, but what are you gonna do?

3 Responses to “It can be hard to write a blog post with a cat sitting on your mouse”

  1. jawnbc Says:
  2. Jennysue Says:
    It’s so nice to hear such good news. Yay for good blood, new stoves, birthdays, and cats on mouses! I love it! Happy belated my friend! May you get lots of good uses out of that stove
  3. Vicki Says:
    With such great news we will forgive you for not posting a really edgy post.. HAPPY BELATED BIRTHDAY !!! so glad it was a nice one. you deserve it.
    I hope you have some wonderful camping this summer and whip up some great food on your new stove.
 Posted by at 3:41 am
Apr 192006

It’s funny how language evolves around an illness.

I bumped into a woman the other day; a woman I used to work with. Actually, a woman who tried to impale me with the forklift when I didn’t do her bidding. That was pretty much the last time we spoke untl I bumped into her at the gas station on Tuesday.
To be true, I didn’t recognize her or I would have laid rubber from here to some distant suburb. I still had the nozzle in the tank when she started talking with me.

I said hi back and made a politely reverential remark about her brand new grey Mustang convertible.

“Oh, yeah. My dad killed himself a couple of years ago and I bought this with my inheritance.”

Oh, golly. I have a crazy and sometimes brutal life and that is one of the chilliest things anyone has said to me in a long long time. And if you take out the times when I get paid to listen to horrific stuff, it’s been a really super long time.

“Sorry about your dad,” I say.

“Oh, it’s been a couple of years now; I am okay with it.”

“Oh,” I think.

“I heard you were sick.” says the gal who once tried to kill me.

Now, ironically, I have just come from my bloodwork appointment and still have the wee band-aid on my arm.

“Yeah,” says I, “I was sick” (Because in case you didn’t know, sick is a euphimism for any dastardly disease that makes your life more complicated than other people’s.)

“How are you now?”

“I dunno,” I say, pointing at my fresh pink band-aid, “I’ll find out next week.

It still strikes me as odd that we say “sick” to mean the flu or cancer.

I think this requires more thought.

There is more to say about all this.

4 Responses to “I heard you were sick…”

  1. Vicki Says:
    Very interesting thoughts. I also notice that when people ask how I am I try not to be too negative – I don’t want to make them feel bad. ?. How backward is that – I want them to feel okay?
    Take care Spike.
  2. jawnbc Says:
    You could have said “was it because of you?” But how spiritual would that be?

    Euphemisms are invariably designed to respect boundaries. Even freaks use them without knowing why.

  3. Jennysue Says:
    Hey Spike
    I too have had some run-ins with pre-cancer life people. They too said some pretty dumb things. What can I say, some people are not as considerate, wise, and aware as us!
  4. Gimpy Mumpy Says:
    Brilliant post. People feel they have the right to come up and say the strangest, often offensive, things to me but this lady takes the cake!
 Posted by at 3:43 am
Apr 092006

I have an exam I should be studying for, and if I was going to thumb my nose at higher learning, there is a bed I should crawl into because I have to work in the morning, but whatever.

I got lots of feedback and such for that last post about trying to be grateful while feeling really pissed off and ripped off and more than a bit confused.
Oddly, it seems to be all cancer survivors who wrote to say anything about that post. And really, I think that is both fine and cool.

I think it is really interesting that I am not the only one who is just fantastically pissed off about having gone through this nasty cancer episode. It’s good for me to know there are other folks out there who are a bit pissy about the whole thing, because, as I mentioned, I *feel* like I should be ever so happy to have made it through, this far, to the other side.
And, as I mentioned, I am.
And I also really miss the person I was before cancer came in and bleached a whole lot of sunny emotion from my life.
I don’t really want to say that you can’t understand unless you have gone through something similar. But I think most people actually can’t. I am not trying to be all precious and unique.
It’s just totally weird.
And it happened, and I would like to move on.

Here’s the flipside.
Here’s the sunshine head episode. People who know me in real life may need to walk away now.
But here’s what I have been thinking lately.
I know this cranky man through my work. Being cranky is his day to day approach to life. If a crisis comes up, he has a variety of different personas, most of which are friendlier and easier to be around, and he opens the bag and lets some other aspect of his personality come to the forefront, and it’s very interesting.
It’s very interesting to me to realize that being cranky is a choice he has made and it is his default position.
It’s interesting to me to see how he is happy being unhappy.
And I don’t want to be that beast.
And that’s part of what is freaky about the whole ‘pissy apres cancer’ scene. When does the crabbiness stop being reasonable and when does it start anchoring itself on to your soul and make every day an Eeyore day?

Okay, so anyone who really really knows me should really really turn away now.
Cuz the sunshine is about to become blinding.

Here’s the thing of it.
And this is a message to myself way more than it is a message to anyone else.
Every day we wake up and, to some extent, we get to influence what sort of day we are going to have.
I think the most important thing we can bring to any day we have above ground is some degree of compassion and caring for the people around us.
I think we all have to decide who we want to give our compassion to, but really, that stuff, those fluffy emotions, are the things that make us human and it is those things that we do for each other that make life worth living.

So, there you have it.
The sunshine episode.

Don’t get me wrong; I ain’t got any of this down yet. But it is on my mind.
I guess my point is, I think we have every right to be angry and grumpy and confused and testy and anything else we may feel.
And at some point, I think we have to swim back and join the school we came from, even if we did get pulled up on the deck of the boat. For whatever reason, we got kicked back in the ocean and we got another chance.

So maybe we still got the wound from the fish hook, but it’s way better than being surrounded in mayonaisse and sourdough bread.

We have a second chance and we gotta get swimming.

5 Responses to “And another thing…”

  1. Liz (suburban girl) Says:
    I will never look at a tuna fish sandwich the same way again. I agree with the fish analogy. By the way, I think I can compete with you in the longest scar (fish hook wound) competition and I’m learning to accept that too.
    You spoke the truth in your sunshine episode. Love is all there is.
    Sending love your way(oops forgot to tell you to shield your eyes)
    Suburban Girl
  2. jawnbc Says:
    Dare I quote it…..OK I dare

    “the grouch and the brainstorm are not for us. They are the dubious luxury of so-called normal men, but for us they are infinitely grave. They are, in fact, poison.”

    You have every right to be pissed off. Doesn’t mean it’ll make your life any better. Being angry and being a crabby assed mo’ fo’ arent’ the same.

    And for you to be miserably cancer-free? Better than dead, but by how much?

  3. Spike Says:
    Jawn, jawn, Jawn…

    I don’t know how to explain it to you. Honest, I don’t.
    I would be infinitely pleased to have a burst of joy wash over me. I put a lot of effort in to trying. Most every day.

    And if I could just wish it away, I promise you, I would.

    I am putting all my extra energy into getting my life back on track. Sometimes that is frustrating, sometimes it’s tiring, sometimes it’s annoying to see how I fell behind on things I planned on doing and I have to scramble now.

    I actually think it can’t make sense to someone who hasn’t done this.

    But I appreciate that you pay attention. I really do.

  4. Dee-Dee Says:
    hmm… was that jawn’s attempt at tough love?
    jmho- after everything you’ve been through you have every right to be angry and crabby..
    I could never understand it all exactly because I’ve not been through it- but it almost seems like post-traumatic stress syndrome (there’s even a name for it!) Many people are diagnosed with it after a traumatic event in their lives. (think- person who is critically injured in car crash- greatful they made it but stunned from the whole ordeal) Many soldiers are diagnosed with it when they come home from war.. You, my friend, fought the war valiantly and won. Give yourself time…
  5. Liz (suburban girl) Says:
    I’m 9 months out from finishing chemo and after the initial post-traumatic stage, my life gradually leveled out to a “new normal”, a term my counselor coined. By the way, counseling and pharmaceuticals, specifically Lexapro and the occasional Ativan, helped alot.
    My counselor also said that when cancer patients feel better they often want to do so much they end up leading a frantic life instead of a full, meaningful one.
 Posted by at 9:29 pm
Apr 052006

Ah, another late night post, filled with that sweet insanity that comes from a long day at work and a flash of introspection.
I got an e-mail from an old friend this last week, and it got me thinking about a few things, and also motivated me to actually post about a few notions that have been brewing in my head for a bit.
First of all, I’m not the sort of dyke who wants to sit around and tell you what a positive influence cancer has had on my life and how, knowing what I do today, I wouldn’t have it any other way. I am not sure what’s up with the folks who say such things, except maybe those folks have never been weaned off their pain meds. I really don’t know.

But I *do* know that there were some good things that happened because I had cancer. As I think I have mentioned here before, some old friends came pouring out of the woodwork.
This is good, especially when you bear in mind that other, relatively new, friends ran for the hills.

And actually, I am not even mad about it. It taught me some things about the importance of showing up when people you care about are having a hard time, rather than just talking about what you think you might do or what you should do or what you are thinking about doing.

But I digress.

I was chatting with this old friend, and I was thinking lately, about my overall level of crankiness in this post-chemo time in my life and how I feel this pressure to be happier and more grateful. I can’t quite identify where that pressure comes from. Maybe it’s just from inside my own fuzzy little head.

But I think it’s bigger than that.

But that part isn’t what I wanted to write about today. I wanted to write about the draft.

I want write about how it feels to be less than delighted, all things considered. And don’t get me wrong. I am plenty happy that, so far, I am on the right side of the ground. Happy, happy, happy about that.

I think a bunch of things happen when you are trying to wrestle cancer to the ground.

1) It totally screws with your head.
How could it not? Some folks who read this blog will know full well how completely bizarre it is to have a stranger in a lab coat tell you that your chances of staying on the daisy side of the dirt, instead of the ‘pushing up’ side of the dirt, are less than spectacular. If you have never had this conversation, just trust me that it messes with your head. And I don’t even mean to be ironic when I say it’s life altering.

2) I don’t know about anyone else’s approach to their illness but mine. And I decided, in the times I felt well enough to remember that this was my strategy, that I was going to fight this mo-fo the entire way. And that even though the statistics for making it were freakishly bad, the statistics actually do prove that some people make it. And I had to set my sights on being one of them.

And what happened with that is I took the stubborn component of my personality (which is really quite small in day to day life. Just really a wee speck of a thing, it is) and let it run the show. You know that saying about “it isn’t the size of the dog in the fight, it’s the size of the fight in the dog”? That’s how I felt. I let the fight in me take centre stage.
I think that was good. But it meant I came out of the gate swinging, even when I didn’t need to.

I am still learning how to undo this one and respond like a dog that might be allowed in the house.

I realize the following comment is going to doom me to geek status, but coming out of chemo-land, I felt a lot like Buffy in season 6. Like I have been pulled back from the dead and that I may have become a bit anti-social while I was away, and meanwhile everyone thinks I should be so happy. And I am happy. Really, truly, I am. But it’s more complicated than that. Happy is one emotion I feel. I also feel confused and a bit lost. I feel scared in ways I can’t even talk about and I am not sure anyone wants to hear about, anyway. I feel angry, though less and less as time goes on. I feel completely stunned that something like that happened to me and on a day when my denial skills are particularly sharp, I can pretty much convince myself that it didn’t happen. Until I see the 12″ scar on my gut. And I think, “Oh for the love of Pete, Spike, terrible things happen to people all the time. You in no way have the market cornered on this, and, for a totally shitty situation, you couldn’t have had better results along the way, so shut up and get on with living your life.”
And I get freaked out that the world kept chugging along and now I have to run like hell to catch up. It’s a totally grab bag of emotions. I’d advise gloving up before your ram your hand in there, cuz some of these things are corrosive.
And the reason I write this is not to complain about anyone, except possibly myself. People have been very good to me, and very kind. Really, at this point in time, I hope that maybe I can help other people who are wading through this bizarre territory and maybe make them feel less isolated if they are having mixed emotions.

So, it’s not that I am ungrateful. I’m just trying to help.

6 Responses to “It’s not that I am not grateful”

  1. Jennysue Says:
    Hey Spike, YOu could have copied and pasted that post to a dialogue bubble outside of my head….(that is a funny image) because I have the exact same struggle with all the emotions that come along w/ cancer. It is hard to digest, and to explain. But you did a good job getting some of your thoughts out there. I am with you my friend, I am not sure how grateful I am either.
  2. Nicole Says:
    Hey Spike,

    Like Jennysue said…you really gave the thoughts in my head a voice tonight. I spend as much time telling myself I should be grateful, happy, thankful as I do feeling angry, frustrated and afraid. Unfortunately I also spend a lot of time feeling guilty as well because I feel so isolated from my friends. I haven’t felt the same level of support from all my friends and family in this and it makes me feel like maybe I shouldn’t be feeling anything at all about all this cancer stuff. Maybe I’m just over reacting. I know everyone means well but at the end of the day, most of my friends have sent me one maybe two emails, and of the family I’ve heard from (my father excepted who has been nothing short of amazing) it was basically one phone call before treatment started and then nothing.

    Am I horrible person for not wanting being the one that has to call their friends and family and ask for a little love? I feel like I’m just supposed to be grateful for the support I do receive – and I am – but I also feel sad and alone more often than not.

  3. pat Says:
    and the two of you are not alone….Spike, thanks for being able to put it into words….I’ve had many of the same thoughts in my head but have not yet shared them with anyone because I don’t think they will understand.
  4. H in NC Says:
    Hi…I stumbled upon your blog right after my OVCA dx on 2/1/06. I found it so refreshing being from the lesbian point of view. I have only had 2 of 6 tx and can already relate to many of your thoughts/feelings. My girlfriend is from Toronto, living here in NC, and is a Godsend! She has been so dear in all of this muck. Thank you for sharing. It really does help those of us in various stages of our journey. I wish you longevity with dancing w/ NED’s sister. :-)
    H in NC
  5. Liz (suburban girl) Says:
    You are such a talented writer. You expressed the “just finished chemo heaven/hell” perfectly. I think it is a stage everyone on the daisy side passes through.
    I wanted to help people too, so I made a clumsy blog that no one seems able to find. Then I realized I didn’t want to be thinking about the “pushing up through the dirt” side so much and took a big hiatus from the internet.
    I am helping one other woman with ovaCA undergoing chemo and that seems to be enough right now.
    As for the genderbender treatment issue, I’m glad you feel a sense of entitlement and don’t let other people’s initial awkwardness get to you as much. Enjoy the daisy side! Ignore the statistics and maybe let the fighter in you to stand at ease for now.
  6. Vicki Says:
    Hey Spike,
    Welcome to geeklife – I’m so glad that you mentioned Buffy.
    It’s the one show that I can watch when I’m chemo sick… I know all the shows by heart, but I watch them because somehow I imagine that as Buffy and gang are kickin a** on a demon/monster that’s what I’m doing to the chemo cells and I love it.
 Posted by at 3:44 am