Saturday, January 1, 2011

In love, or just tied down?

It's New Year's Eve, and here I sit at my computer with a can of Salt&Vinegar Pringles and a box of chocolate frosted mini donuts. It's too cold outside, and I don't have the energy to go down the street and party with the neighbors, most of whom annoy me in the first place. 

Woo-hoo, what a fun party girl I am.

I had a visit with my oncologist earlier this week. We had a little bit of discussion about how upsetting my last visit was, how I don't like being the last one there and feeling rushed in the infusion room. I'm not sure he really understood the bulk of what I was saying, and his solution was to sweep me into that room and sit me in a chair before it got too late, and let me sit there. His other solution was to offer to see me at a different clinic, earlier in the day. I took him up on that one, and we'll see how it goes.

I told him that I'd really like to just take a break...walk away...but I can't, because of my port. 

I don't think I really made him understand what a huge impact that this port, which everyone was so happy for me to get, has on my life. The rest of my life. I didn't get it placed this time just for the duration of treatment. There is no point at which it will no longer be needed, and I can have it removed. This time, it was for keeps. Where ever it is, however big the scar, however uncomfortable it is to lie on, it is now a permanent part of me. 

Along with that permanent placement, this life-long relationship, comes a permanent linking to the nurses and the infusion room. There is no point at which I can become so fed up and tired of the routine and rigors that I just walk away. I can never say I've had enough, and stop seeing the doctor, or having my blood drawn, or whatever, for any length of time longer than six weeks, because the port has to be flushed and heparinized every four to six weeks. 

The literature says four, the doctor said I could do six, but that was the longest with which he was comfortable. (For anyone reading and wondering why, there is a risk of blood clotting in the catheter line if it is not regularly flushed and injected with a heparin block.)

I can never say "screw cancer" and run away. I can never say "screw cancer" and disappear or hide out. I can never say "screw cancer" and stop dealing with insurance and bills.

I could, but only for four to six weeks at a time. 

And that has all the impact and efficacy of a quarterback retiring and un-retiring over and over again. 

Will I ever be able to say, "No, I don't want to do that treatment" when there I am, plugged in to an IV anyway? I couldn't even say I didn't want to do blood work, since I have to have the port accessed to flush anyway, why not draw blood?

The port, as I've written before, makes it SO easy to draw the blood, do the infusion. No vein to find. No pain, no death grip, no tears. 

I told the doctor, however,  that I'm tired of hearing how great it is for everyone on the nursing staff that I got the port. Every time someone brings that up, I feel guilty for the months that I put them through hell trying to find veins and nurse blood out and Zometa in. Doctor tried to tell me, no, it was for me, so I wouldn't have all the trauma and pain. Well, I KNOW THAT! But the staff bringing it up all the time is getting on my nerves and pissing me off! 

We agreed that I needed a whole change of venue, change of staff, change of office. This new clinic in Gilbert is supposedly very swanky. 

I just hope there are fewer old people.

The question remains, glaring in the back of my mind as I write this, if I am this much of a pain in the posterior with blood draws and Zometa infusions, how much of a nightmare am I going to be when I do need chemo?

And yes, I meant to say "when". It's not a question of "if" I will ever need it. We know that eventually the cancer will spread and I will need to go that route. I do still hold to the idea that I will still be able to say "no" when that time come, if that is what I choose, even though I know that the port makes it all the easier to be in that chair for chemo.

So this disease is for life. This port is for life. These nurses are for life. 'Til death do us part. 

'Til death do us part. MY death!

There's no divorce in a prognosis like mine. 

I know, I know; there are different doctors, and different nurses. We'll SEE if there are different nurses at the clinic in Gilbert, or just same nurses rotated around like they do between the Desert and Baywood offices. 

I have six weeks to ignore it. I'm not doing Zometa at my next appointment; I'm going to quarterly now, unless I can talk the doctor out of it six weeks after my appointment in six weeks. I worry about long-term effects - the same worries I had before I started it, which are finally being taken more seriously by the medical community.

Maybe I'm just flexing my control muscles for the time when I do face chemo, and really need to stand up for myself. Maybe, like my incessant talk about death a year ago, I'll get it out of my system and get over it, like a phase or a step in the process... in the process of marching toward one's death, knowing for almost a certainty from whence that death will come, in facing constantly the financial challenges leading to it, in being unable to escape thinking about it and dealing with it, except for four to six weeks at a time, during which time the bills keep coming and the insurance must still be held on to, and the disability company must still be constantly assuaged.

Meanwhile, I lie down to bed every night and worry that the port is going to eventually slide into an undesirable position, and cry if I think about how frustrating it is to be in a situation to HAVE to deal with things and people I would rather just avoid. 

Well, story of my life, that is, actually. 

I think I need a button to wear to the doctor's office that says, 

"Yes, as a matter of fact, it IS all about me". 

If it weren't, I would opt not to be there.