Saturday, November 04, 2006

Let me just warn you now...

.... this is not a happy post. And a long one, at that.

I've recently thought of what to do with this blog, and considered allowing it to morph along with me, become more of a "here's me and my new life after cancer" sort of thing. Something about that felt very wrong, though, and I think I've finally come to the reason why in my long rant, which begins, uh, right about now.

I started this blog tonight as a way to vent. I hate venting in a lot of ways, because I'm not a big complainer unless I believe it will lead to a new means to a better end. In many ways, however, ranting here feels very appropriate here because for a long, long time, (which, in reality, was only a year or so,) I came to this blog to talk about the things that rolled around in my brain on those never-ending days that I lay on the couch hating chemo. Back then, I used this blog as a way to reach people that I loved that were not near me, a way to ask friends that had disappeared to read and understand and help, a way to assure the ones I love that everything is fine and I'm keeping my chin up.

I can't seem to let go of that, yet. Perhaps it's because, oddly enough, I can't seem to let go of melanoma- and that means, I guess, that I'm holding on to that tumultuous relationship I've had with melanoma these last couple of years. We have been so on-again-off-again. I feel maybe this is a point in our relationship when we should explore other options. You know, spend some time apart and decide what it is we really want. Get to know ourselves again. Spend more time with our friends. Takes some time off.
It's me, of course, not melanoma. And I know that we'll always be friends.

It appears in the midst of the last few months of life as a cancer survivor that I have exited onto that ramp in cancerland when I am supposed to be moving on with my life. I am in the stage where active treatment has ended, and I crave a way to be progressively battling the beast, as it is so affectionately called. Many people during this time become depressed. And then you move on.

I, however, am stuck. I'm having trouble moving on. Perhaps this is because for the first time in a long time, I'm allowing myself to really process the last year or so. I think of the surgeries, the tubes, the weeks in the hospital, the nurses, the minor procedures, the looks I saw on people's faces, the weeks in the hospital. And, of course, the Interferon. Talk about a rocky relationship.

I can't get it out of my head. I think about how I felt on the chemo all the time. Let me start with the basic fact that it's difficult to describe chemo to someone else. It's not just that you begin to like vomitting because it sends a wave of relief. And it's not what you think it is before you go through it. It's not just the nausea and sickness. It's not yuckiness. It's a level of illness and exhaustion that you cannot describe. It's being so sick and so tired that you can't even watch television. That's not an exaggeration. I'm not talking trying to pass the MCAT, people. I'm saying you're too tired to concentrate on a sitcom for 7 minutes. Even Family Guy. Who's too tired for Family Guy?

At the time, I couldn't really have explained it, but, looking back, now it is vivid and way more easy to detail. I craved Vicodin all the time because it gave me a brief hour or so of not feeling that overwhelming achiness and fatigue just before I fell asleep. An hour. That was what I got out of it- an hour of feeling normal. And it was always on my mind, "Maybe if I could take a Vicodin, I'd be able to walk out to the car without feeling this way and we could leave the house...."

Food was just a chore, a complete burden, because you eat simply to have the mildest change in energy level, and yet it was like constantly being forced to eat clay. Everything was awful- the texture, the flavor, the incessant need to swallow and then mentally force yourself to think of other things- anything: the shape of a spoon, the ceiling tiles, the cold feel of the table- in order to keep it down. More mentally challenging than anything I've ever had to do before. The GRE has nothing on this.

It's been a few months since then. I've immersed (or is it emmersed?) myself in a new job, gotten lots of hair back, begun to lose a teeny tiny bit of that chemo weight, and am learning all about life after cancer.

I've begun to read MPIP everyday again, because it has become obvious that there is no life after cancer, there is only life with cancer, and life waiting for more cancer. How negative is this to say? Tremendously, tremendously negative. And apsolutely true. The thought of it is always there- when is my next recurrence? How long will I live when it comes back?

A lot of times I think this is an overreaction on my part. Maybe I'll be okay. Maybe it will never come back. Lots of people live 20, 30 years without a recurrence.
But then there's the reminders all over my body: the new bumps around my surgery site. The constantly changing moles around my primary. The spots I find on every inch of me. The new reason to go to the dermatologist every flippin' month. The constant tests and the constant waiting and the constant weight of bad news.

Augh. This is so negative, I can barely stand to write the words. And yet, I feel like maybe this is what has been inside of me all along. This is what I've wanted to say, but I haven't said in order to spare the feelings of those I love.

When I say these things out loud, it's always the same. The people I love want me to believe that everything will turn out okay. And, in a lot of ways, I have so much to be thankful for. In ALL ways, I have a lot to be thankful for. I'm NED. I'm alive. I don't have bone mets or kidney mets or brain mets or liver mets or constant tumors appearing that I can feel through my skin.

And yet I sulk. I cry in the shower. I hate that I'm waiting around for bad news. I hate scheduling the doctor appointments and that look on their faces when they talk about "when this comes back." When? What happened to if? I hate how fixated and wrapped up in my own life I have become. Work is such a relief- an amazing chance to think and worry about someone else for a while.

Someone posted on the MPIP bulletin board a few weeks ago, and it was so right on the money for how I feel, I had to save a copy of it. Here's a pasty job for you, so you can read what I've been thinking, written by a man named Jimmie, who's obviously been channeling through me.

Posted by Jimmie on October 24, 2006 at 13:37:57:

It's been a crazy few years- off and on Interferon and Interl-2. Finally, after several years of fighting this, my doctor said my NED. I went back to work to carry on with my life.

Only been back a few weeks, and work's good, but the cancer is always there in the back of my head, telling me not to have too much faith.l. I don't know, I'm not sure what to do. Moving on doesn't seem as easier as I thought it would be. I guess this is the "new normal" everyone talks about.

Some days I wish the scans would just come back positive so I'd know what to expect. Ain't that the craziest thing you ever heard?

But, I'm still so tired, even after finishing treatment 6 months ago.

My wife is a little unsure of how to take me these days- I guess she thinks I should be happy.
Come to think of it, I think I should be, too. What the heck is wrong with me?

You all sure seem like good folks. I'd sure appreciate any help you could offer.


I appreciate Jimmie for what he said, for his honesty, and for making all of this easier for me to say. It was a relief to read it, and to say to Bobby, "Hey, read this" so that he and I both could see that maybe I'm not as crazy as I sound. And it added an air of distance, because if someone else posted it, and Bobby said, "What a freak...", then we could've just moved on without talking about those being my feelings, too.

Maybe if Jimmy hadn't said it first, then I (cowardly) never would have posted this blog. Lots of people offered Jimmie advice, and a big part of it was, "You're depressed, dude." It's an eye-opener for me. Maybe I need to do more about these feelings.

But, for now, they're here, and that helps.

And I think, today, this is all I can do.

Let's be safe out there, people.



Snobby Bobby said...

The only thing I can say is thanks for posting this, I love you!


faye said...

i love you too, Bobby. You complete me.

Carver said...

I admire your courge. It's pretty obvious that I'm not able to move on from my stage III MM dx and am over the top as far as the MPIP and all things related to melanoma. What you said and how you said it resonated with me.

As ever, Carver

Sarah said...

It's the new normal baby, and ya, it really sucks sometimes, but then at the same time LIFE is soooo good and you feel blessed for every moment.

I made it back to work for 4 months after 1.5 years off and I did have a few breakdowns at work: "What am I doing here when I don't know what tomorrow will bring!?"

It's scary, the not knowing. But as you know, the only certainty in all this is that there is ALWAYS hope! Embrace the hope and hold your head high, chin up, while you walk that line between Wonderland and Cancerland-- there is so much to see!

I'm such a cheeseball.

Please don't feel sorry for "being negative". Your description of Interferon was bang on. I always used to say, "I'm too tired to talk"...literally too tired to respond to simple questions. It's all in the past though.

Did you ever read Dancing in Limbo? You are so there right now, hon.

Peter said...

Miss M

Here is a slightly long response to your long rant…

I identify with everything you have said, but I don’t have any quick answers or solution. I think it is rather complicated.

When you need a filling in your tooth, you go to the dentist, he does his thing, and a few days later you can effectively forget about it. When you get a cold or the ‘flu, you stay in bed, take medication and vitamins, and within a week or three you are up and about, as good as new.

Some diseases are different. Even though everything has been removed surgically, and there is no apparent disease, there is always the possibility that they will recur. Many cancers are like this, and there are other similar diseases. This is the reality. I have written on the same issue, and I think it is important to recognize the reality, but also to move on.

Modern science has given us many magical solutions to physical problems, and in many cases this allows us to move on with our lives.

But it is not so easy to remove all the mental patterns and anguish we have gone through. Our thinking has been developed over years, through all the various stages, and through the experience of interferon over at least a year. You can’t just remove it surgically – It has become part of our personality.

I was chatting to my oncologist last week. He says that many cancer patients come in for treatment, and then just disappear. They have to call the patients to see how they are doing. I think many people are only too pleased to say they are “cured”, and forget about the future possibilities.

Keep on blogging!


Jeannie said...

Hi Miss M: I really haven't taken the time to get to know you, but the post that you are a celebrity on the MPIP site made me curious.
I am not a young poster (ancient at 56, in fact) but I can relate to your feelings. I am a stage IIIc, NED for all three years since my surgery to remove 5 cancerous nodes in my left arm. Had lots of scares and then a second disease that kept my cancer docs wondering at times, as well as my Rheumatology docs. I have Lupus, also. It is a mysterious disease that often masks as something else. I can cause lymph nodes to be reactive. It can cause liver problems. It can cause ascited (fluid in the abdomen), which is also caused by cancer. It can cause lung problems, pleural effusions (I am a master at having those) and other things that cancer can also cause. I have been an enigma at MD Anderson. My Rheumy's have been puzzled. I had one quit as my case was too perplexing and he didn't like MD Andersons interference. He would say that my symptoms were NOT lupus and they would say, "yes they are" and there were disagreementa all over the place.
Before I go on and on, I wanted to tell you how I am relating all this. I feel that I am waiting for the shoe to drop on the other foot with the Melanoma. One doctor will say, "hey, your high risk", especially I am on immunosuppresants for the Lupus so I can live with that disease. The other will say, "Well, we probably cut it out when we did the surgery." Man, can't they get their acts and facts together?
Then, when I am not worrying about the melanom and going on and enjoying my life, the Lupus kicks in and kicks butt big time. It has caused me more hospitalizations and problems than the cancer ever thought of doing.
So, no matter what, some of us are not allowed to forget our diseases. What is the heavenly purpose behind this? I don't know. Maybe we just need to be reminded how precious every day is, and how much our loved ones mean to us. We need to be reminded that even if we think we are, we are NOT in control over our lives and outside forces. We can only truly live one day at a time and we need to be able to bend with the wind of change.
I am going to do more reading up about you and find out what I want to find out. In the meantime, since I just discovered that we are moving back to Texas (near Austin) next month, if there is anything I can do to help you with your awareness campaign, let me know. I am tired of sitting around and thinking of melanoma and lupus. Time to do something about it.

Jeannie Miller
Loveland, Co and soon
to be back in Texas

Jeannie said...

PS: Excuse all of my typos and misspellings. I re-read my post and cringed. Bad spelling day and typing day is my only defense. How embarrassing. Ah well, just goes to show I am NOT perfect.

faye said...

A little late...
Thanks for posting this, Lori. I second you not feeling sorry for "being negative." Sharing the negative side is acknowledging the reciprocity of relationships, of the human experience...It's real. I so appreciate that, especially when you might want to leave it in the shower. Thanks for being a friend to us all who read you and love knowing you!


I'm Too Young For This!