Tuesday, September 20, 2011

Changes to blog and Generally feeling Pariah-ish

First of all, I have made some changes to the blog. You'll now need to be a member of the blog in order to comment. I've been getting more unsigned "anonymous" posts than I like, and this blog is really intended as an online diary for me that I have opened up for those that know me to read if they want to know how I'm doing. So, sorry if posting anonymously is your thing: if you want to send me a comment or note and don't want to do it under your own name, feel free to send me email directly. If you know me, you should have this already. Email is preferable to facebook, FYI.

Who knows: I may decide to make the blog private and people will need to ask permission to have access. This is a pain, but I'm starting to get worried that I have no feedback about who actually is viewing it. I don't like *not* knowing who is reading what amounts to very personal thoughts intended for myself, friends and family. I have been getting 160 or so pageviews on every post, yet only a few comments, so I know that many are reading. Its not the kind of blog where I crave higher readership (unless its people who have bladder cancer that may actually learn something there). So the disconnect between reads and comments/feedback seems odd to me. I had assumed that only 10 or so people were checking in.

Anyhow, I guess this leads into the next comment, wherein I reiterate that this is a lonely-ass disease to have. No one calls or sends cards, write emails or notes (or, apparently) comments or leaves feedback on the blog. People may be tuning in and may care, but I have no feedback on this, so it feels like no one notices or cares. Quite honestly I have felt like my overall friend-contact has dropped dramatically since I got the revised, metastatic diagnosis. Maybe its just that people are laying low and waiting for the storm to pass (me finally dying). I dunno.

Anyhow, its the sort of thing that -- when added to the anger and the uselessness and the tiredness and the pain and the drug side effects -- starts to make suicide seems like a viable option. I can truly understand how people get suicidal, and believe me the tide has turned and every day is a process of reminding myself why I shouldn't just get it over with.

And it really grates when people tell me that all I have to do is think positively. Dammit, it fucking hurts and it all seems completely pointless. How in the hell am I supposed to think positively? Clearly, I am not thinking positively. Allow me this. I know that people have beat cancer by thinking positvely. I may not. I already have a lot of guilt about this. If I don't beat it, is it because I didn't think positively enough?

I have a great family and a one-in-a-million girlfriend, but the few friends that I feel that I still have any contact with spend our time together watching me uncomfortably, not sure how they should act around me. I hide the pain and bolster my mood artificially, not wanting to be a downer. Yes, this thing is on my mind all the time but I like to think and talk about something else. How should you treat me? I have no damned idea. I've never spent any amount of time with someone going through chemo. Basically, treat me as normal, except don't invite me to events a few years down the road, don't invite me to super physical outings, and be understanding of my need for sleep.

Cancer is not a disease that anyone knows anything about -- with good reason. You probably know one person besides me with cancer, and it may have been a distant aunt or something. One way you can help me if we're spending time together is to pick up on cues when I am getting tired that I might need a nap during the day or might need to head to bed -- even if its 9:30. Don't feel like you need to entertain me or like you're abandoning me early. If I'm tired, I'm just going to get more tired until I sleep.

Anyhow, more rants and I'm what feels now like complaints and lists of things that people shouldn't do, which is not what I started out intending to write. Regardless, these are a few things that have been bugging me of late.

I was just talking with my mom and she was telling me that everyone wants the happy, smiley Michael back (but that we'll take whatever we can get, happily). I want that guy back also. Its important to note that he may be gone for good. This makes me angrier than anyone can know.

21 comments:

Katy_O said...

Michael -
Your people are here. We do care.
For what it's worth, it's rare that my friends call me or want to hang out. I find myself pursuing my friends - I understand how it gets tiring - if you even have energy to put into it.
I invited over 100 people to my BBQ Saturday night and something like 14 people came. And I was so happy to see the ones who made the effort.
It's OK to be angry. Were I in your shoes, I'd be really angry too. Let it out. But I hope you can also enjoy the things you can and fully live the good moments you have right now.
I generally don't comment because I often say the wrong things - maybe have this time too.
But this post now has a comment.
Love you Michael,
Katy

Eclector2 said...

Dear Michael,

Thank you for your honesty and for sharing your feelings.

If depression is, as I believe, anger turned inward, then you need to let yourself be angry. You have a lot to be pissed off about. You are NOT to blame for getting this damn disease and it won't be cured by your attitude, bad or good.

Do not feel guilty about what others say or think. It's totally fine for you to say "I feel like horseshit" or tell us to go away when you need a nap. We can handle it.

You are angry, bitter, and sad and grieving for the life that you were busy planning when it got interrupted by cancer. We, your friends and family, are also grieving, we're grieving the loss of life as we once knew it — back when you were that happy, smiley Michael who was going to live forever.

I miss that guy, but I love the guy we now have and want him in my life as long as possible. Yes, your cancer has changed my life, but a good day lately is a day when I can spend time with you.

I hear that you are discouraged, but chemo DOES put people in remission. You still have options. The future can be better than the present. You are loved and valued and one of the most important people in the whole world to me.

Love, Mom

James said...

James McManus said...
Pain? Take the drugs that they give you as long as they don't mess up your thinking too much. Pain is only useful to remind you that something needs fixing. You already know that.

Katy's comment on friends is right on point. Even when, or especially when, things are tough friends, even good ones are often not there. Enjoy the ones that are and keep reaching out to those that are not. Just don't get upset if they flake out. Just remember that they did that when you were healthy too, you just had more energy to corral them.

Your post above let people know that you need rest. Feel free to tell them in person when they forget. Subtle hints are often wasted.

Be positive! It is good for you and those around you. If you fail at being positive --
So What? You have a painful and annoying disease. Be positive next time.

You are lifted up in prayer Michael. Use every moment the best you can. That applies to all of us, sick or not, cancer or not. If you have bad attitude, anger, even suicidal thoughts -- yeah well, do better next time, OK?

Oh yeah, and get well, fight this cancer thing and have a good and long life.

James

Laura said...

Michael,

I am checking and reading every day...I have even commented when I think my input is helpful. Just know that we are out here thinking of you and being sad and mad and uncomfortable and tired along with you. I wouldn't even begin to expect you to feel and act like the person you were....you are no longer that person and I think most of us can feel and understand the anger you are feeling about that. Rant away! If you can't rant with your friends and family, then who?

Life has kicked you in the ass and you didn't do anything to deserve it. I yelled in anger when you found out your cancer had come back, I wish all of the good things people think and feel towards a person really could wash it all away, you would definitely be cancer free right now I am sure.

Hopefully the more you put out there about what is frustrating and what you like can help others understand how they can help you. I think we all just get to living our regular lives and things fall by the side unintentionally.

Don't feel bad about how you feel, that is your reality and I think we can only just try to be there for you and make it as good as it can be....which, in reality, may not be very good at all.

Much love from me,

Laura

Divy said...

Mike, for whatever my post is worth, there are people reading and they do care. There are those you have touched over the years and continue to touch outside those in your immediate circle of friends. I can't even pretend I know what you are going through or the depths of your despair. That you have to navigate this at all is heartbreaking and if there was anything I could do to change it for you, I would. So would any of the other 159 odd people who are may be watching without posting but who are saying daily silent prayers for you. You matter, Mike. Love, Diana

raggers said...

Well, if I can stare down Google and post here, anybody can do anything.

Except, of course, that I wound up with an unnecessary Blogger account, named in a thoughtless hurry, and now lodged forever in the universal memory, rushing outward at the speed of light to all points. Even if the sun were to go nova and wipe us all out tomorrow(which would be a bummer from your viewpoint, admit it), my unnecessary Blogger account would still be spreading outward, forever, having gotten a several-hour head start.

See you on Thursday. Lunch is my treat. Try not to be hungry!

--Dad

Cathy Crea said...

Don't feel like you have to be apologetic about how you handle commenting, membership, and the blog. They're your thoughts and feelings, and it's totally understandable that how you feel about sharing them will evolve and change.

Your emotional pain is palpable, and your anger is rational, if that makes sense. I'm sure everyone wishes they could make it easier for you. The reality is that no one will truly understand how it feels to go through this.

I'll start looking for the "I'm Sorry You Have Bladder Cancer" cards at my local Hallmark store. I'm sure there's a good one there somewhere.... if I just keep looking....

John Slade said...

What am I, chopped liver?

I'll bring that sunshine cancer book for you on Friday; the 'gotta be positive and it goes away' one that Barbara Ehrenreich wrote.

The phone message I left (because I do call!) was maybe a little awkward, because in trying to talk about something other than cancer (gaming) I ended up talking about what you can and can't eat... oh well, I tried.

If you have a hit tracker look to see who is hitting your blog; it might be that it's being all webcrawled by automatic services that key on words like 'cancer' or the names of medications. Most of the hits on my blog come from people looking for a picture of gay prom kids. (Go to google image search, type in 'gay prom kids' and the third picture is off my blog. Gets me about 5 hits a day.)

Anyway, hugs and love.

(PS - I attached my name to a blogger account as well, since I blog under my netname.)

Emily said...

i read every post the moment it goes up. i try not to comment on all of them, though, because it ends up sounding like i'm pushing my VAST KNOWLEDGE(tm) from my time as a home care aide, and this isn't about me, it's about you. as a distant friend (temporally, spatially, emotionally) i'm probably not one of the faces you've been missing. but: all the love i got i got for you. you can have my ambien, too.

for what it's worth, my theory is that people who "beat cancer with their positive attitudes" are just the people who happened to beat cancer and have a positive attitude at the same time. plenty of cranky people walking around, and plenty of happy people in the grave. a positive attitude can improve your experience in the moment, but forcing a positive attitude when you're not feeling it doesn't do anyone a lick of good.

TootsNYC said...

I love you, Michael.

queenvalkyrie said...

hey friend...i am one of the daily readers

i will endeavor to comment as i adore you..been through this with several friends...too damn many actually.

some have made it through..even multiple times..WITH HIV even...some...not and I sang them through the door to the next adventure

with life..regardless of cancer or what else...no one knows what will happen..we can only hope for the best,enjoy the time we have,suck the marrow from the bones,fuck like mad,laugh like crazy,love infinitely and ..if you are lucky...prepare for a glorious exit.

maybe that is just me and my Viking lineage (shrug)

the Idisi chicas chant and sing for you still every gathering and will continue so

it sucks that i am carless or i would hang out if it would bring you joy. i would be happy to facilitate some sonic healing work with you if you would like.

you ge to be pissy. if it bugs me..i will tell you..and you can choose to tell me to fuck off.....

been there with dear ones before in your situation...i can handle what ever you dish, baby....bring it

love,Dayna Jean

8f7228e8-e462-11e0-8527-000f20980440 said...

From Kari Dixon:
I think of you often. I wish I had words to help. If the fact that I'm out here in your corner helps I will post more hellos. I have never been one for a lot of words, but know if I had them I would give them all to you. My love is with you. Hopefully my presence can be soon too.

Kevin said...

One thing to bear in mind is that your perception of time is different now, not just because of the medications but also because you're not working, which gives you a very different perception of time. Instead of the maybe four hours of time between end of the work day + dinner and then bedtime, you have 12-16 hours from waking up to going to sleep as free time.

We do care about you, but sometimes it's hard to figure out what to say, and that leads to saying nothing. This is especially true when we are responding to your blog posts. They tend to be about cancer and pain, because that's much of your life right now, but those are the things that you are telling us you are tired of talking about.

Maybe we need to find a way to create another kind of conversation. What are you listening to? What are you reading? What games are you playing? What are you watching on TV? What do you think of this weather we're having? :)

raggers said...

Lots of people are reading and few comment. Well, that's actually par for publications. I write and illustrate for a magazine with a readership of well over 200,000 and most of the time readers don't write -- even in the age of two-clicks-and-you're-there. That's what most actors face. And, privileged as they are, movie and TV actors have an even more silent audience. (That's probably why they stage those inane awards ceremonies for themselves all the time. So that SOMEBODY will clap and applaud and whistle, even if it's only other phonies like them.)

I think Kevin's idea about another kind of conversation is good.

---Dad

M said...

Thanks all. I am sorry that I have hurt some feelings with all of this. As I was saying to my friend John this morning, these posts are "from the hip" meaning that they are generally written in 10 minutes or less with no editing other than trying to fix major typos. I try to keep them this way as a snapshot of how I am feeling as the time and I don't edit them later.

As I sit here listening to my depressing folky playlist on Pandora and reading through all these replies, it does make me tear up: it is nice to know that people care. Kevin's comment about how there is a distorted sense of time rings true. I don't sleep very well, food and nausea tug at each other all day and medications create a sticky, uncomfortable blanket over all - wrestling with the pain. Blah blah blah. Nothing new. Sorry.

I appreciate the thoughts from all, as always, and truly. Thank you.

I'm feeling better today. My brother and dad's comments about a new conversation is well-taken, and I agree, though I'm not sure where to begin. I spend plenty of time being "normal" and talking about other things, but I still can't forget about this thing. And it doesn't take much to set me off. As an example, driving by a school reminds me that my Master's in Teaching has been delayed again and again by this, and the defeatist in me wonders if I'll get to actually finish it and use it. That's not a call for pity (though that is how some would view it) but a view into how little it takes to get me thinking about it all. And I know that its not healthy to dwell, but some days I just can't stop.

I'll try to find more positive things to talk about and not to make this such a downer, but I reserve the right to talk about what's going on. Even if it seems like I'm repeating myself. Believe me -- I'm completely tired of the C-word. and wish I had no connection to it.

I guess what I'm trying to say is: thank you and I appreciate your thoughts, prayers and comments. Its nice to hear from people and it does keep me going.

cmmastro said...

Two things.

One, page view is a lousy metric for how many people are following you. I've brought this up four times today to start to type this and have gotten interrupted four times. And sometimes I don't have a comment to say, but I still reload your site just to see if you've posted and feel connected to you.

Two, you are a very private person and you are shooting from the hip all your deepest darkest feelings - which are understandably both deep and dark right now. Maybe you need a private (or more private than this) journal for that purpose, and a blog for the "hey world, this is a way to feel connected to me and get major updates without every conversation starting 'how have you been feeling'" That could include the lighter conversation topics Kevin suggested. I think the deepest darkest journaling is important, but it doesn't leave a lot of room for comments beyond "I'm sorry, it sucks." And that gets a little redundant.

Miss D said...

I have never had cancer, but my mom did and she felt this way a lot. In addition, I was quite ill for almost two years the year before Ramon died and was undiagnosed for a year before they figured it out (they thought it was cancer or some other neurological disease or just a mental illness because they couldn't find the reason for the pain). I withdrew, was depressed, and I have to admit, it was lonely. Not a lot of calls or letters except for my mom's.

We all have cancer, we all have terrorist cells, it's just that people who get the disease stop killing those cells. But the pain sucks. I saw it with my mom. But she had some really good advice for me when I was smacked in the head with my own mortality: "We are born terminal, you know." No guarantees. Just what the present is.

You're right. There is no point. You and six other people I know were diagnosed with this shitty disease this summer, two of them under ten years old. I am one to think there probably isn't a point to our lives anyway, and that is incredibly freeing. It made me stop looking for the meaning and just enjoying the little things. I know that philosophy isn't for everyone (otherwise religion wouldn't have been invented), but there you have it.

Just wanted to let you know I understand a bit of what you are going through. And people are weird. They freak out about illness and stay away. The real friends will be by your side. I saw that with mom and I saw it when I was sick.

Miss D said...

P.S. And it really is such a miracle--life, friendships, the world...thanks for sharing. You don't have to be smiling Michael. Why should you be? You can grieve. I was angry and depressed that my body betrayed me. It was like my brain against the body. I think it is normal to be angry and feel betrayed. Give yourself permission to just go with what you feel at the moment.

Deborah in MN said...

So many good comments. For once, I can't think of anything to add, except that I care. And that I hope you'll check out the Bladder Cancer Advocacy Network group on Inspire, if you haven't already. You can journal there and keep individual entries private or limited to your friends on Inspire, who would most likely be fellow bladder cancer fighters. There are success stories out there for this cancer. Don't give up. So I guess I found something to talk about anyway. Oh, well, you know me. Love, your big sis.

Kelly McCullough said...

I'm still around and still reading and still caring. I wish you the best outcomes in the world, and I'm sorry I haven't managed to be in the same space as you in the physical world of late. There are times when this whole living out in the middle of nowhere thing makes life less convenient than it might otherwise be. I'd say more if I had any idea what to say that might help. At the moment, all I've got is hang in there and fuck cancer.

Bootsylove said...

Hello Michael,

This is the first time I've read your blog. My mother died from lung/liver cancer. She was also told she could beat it if she thought positively and felt guilty and sad about not being able to beat it. She was diagnosed at stage 4 however, and told that she would not make it more than 6 months. She lasted 2 after finding out, although she had the cancer for about 5 years undiagnosed. I have compassion for you and am sending you virtual hugs and love. I've always thought of you as someone with a wonderful sense of humor, perhaps channel that rage in to writing some cancer limericks? I'll be looking... :) xo Tammy Boots xo

Post a Comment