Tuesday, October 21, 2008


I took a great deal of happiness from the word 'had'. Sounds like a strange word to be so pleased with, but really, you team 'had' up with 'cancer' and it puts everything into a very comfortable place, comparatively speaking. So yeah. 'Had' was just about my favorite word, even up against words like 'chocolate' and 'laugh' and 'friends' and whatever the winning word in the latest Scrabble game is.
Monday, for whatever reason, I was dreading the chemo appointment at the Cancer Center. I mean, I did not want to go to the Cancer Center. I showered, but then I sat down at the computer and spent more time than I should have reading blogs. Then I did dishes. I sat back down and typed a letter to Trevor real quick. I owed him a letter, but couldn't bring myself to write him until I had my facts all in. His wife just died of cancer. So I typed Trevor a cheerful little letter about how I 'had cancer'. Addressed it. Wandered into the bathroom to start getting ready. Decided that my stray chin hairs needed waxing, so I carried my little pot of wax out to the microwave. I punched the numbers and was thinking that maybe I should put a coat of polish on my nails. The phone rang and it was Mary, making plans to meet me at the cancer center. (Before you jump to conclusions about Tim, he's lost a lot of hours off work so far. His company is showing all the signs of going belly up. They were not able to make payroll last week, and are hoping to make payroll this week. We need the insurance. So this is kind of a worrisome development. Tim can't just go looking for a new job. If he loses this one, no insurance company will touch a 'preexisting condition, which is me. And breast cancer). Anyways, Mary called, and I explained the dreading, and she hurried me along, and we agreed to meet in the parking lot of the Cancer Center in an hour. So I headed back to the kitchen, and realized that the microwave was still running. I had managed to punch in 20:00 instead of 2:00 and the wax was boiling merrily. In fact the stick had burned black. Fortunately there were no flames.
*note to self: stay away from appliances today*
I went back to getting ready, and packed the paperwork, a couple books, the DVDs that I needed to return, and left the house. I did not remember to put the dog out one last time. I did not remember to fill the woodstove before I left. But my chin hairs? Gone.
Mary pulled in, and I walked over to her car. "What are we doing here?" She laughed, gave me a hug and said nothing. It was a stupid joke, but it was the best I could do. And so we went in, and we sat in a freezing waiting room (no joke...I actually went and retrieved my coat). We laughed and we watched people come in and have a seat with us. There were some sick, sick people there. I was sure that I knew one guy, but he was so thin and wasted that I couldn't be sure. I didn't feel like it would be polite to walk up to him and say 'hey, do I know you?' And what would we talk about anyways? I did not want to talk about cancer. So Mary and I visited. Of course, we laughed a lot. We always do. We kept pretty quiet, but still people were giving us sidelong glances. If her husband Danny had been there, believe me, things would have been worse. Lots worse. The man cannot sit quietly to save his life. His eyes would have been rolling skyward, and his drooping mustache would have begun to do extraordinary things, and Danny would have begun to mumble. Once it gets to that point, anyone within earshot is done for, rolling around in their chair groaning through teary laughter, 'Stop, Danny, no more...shush..."
Finally, about an hour and a half later we saw the specialist. She seemed nice. She explained that the PET/CT scan is not the last word, as far as detecting cancer. "Did the surgeon tell you about the cloudiness on the spine?" Surprised, I said, "No." "Does your back hurt?" Mary and I looked at each other. She was there the last time, and it had scared her. "Yes," I said. "Did the surgeon tell you why he didn't biopsy the lump in your other breast?" The answer that I gave her didn't make sense to her. She said she needed to call him and find out what his thought process was. There's an 'onc' report that needs to come back to determine what kind of chemo needs to be done. No one had done that, so she'd taken care of it that morning. It would take ten days. I started to get a little incredulous. I mean, a medport was installed ASAP for chemo and it did not occur to anyone to send the tumor off to be tested to decide what type of chemo needed to be done? And wait...what happened to that word 'had'? Suddenly we are talking about bone scans and MRIs and another biopsy...
I walk out of there with an appointment for November 7th. They'll be calling me in the meantime for the other tests. I realize that I've been waiting for them to tell me what comes next. I realize that I'd better get cracking...it looks like I'm going to learn to be more proactive. Passivity will get me lost in this system. I am also angry. I am angry at assurances that may or may not be true. I'm unaccountably pissed. I drive home forgetting to drop off the DVDs. I've got a shit load of reading to do, and I might as well get cracking.


Redlefty said...

Good for you -- control what you can!

COBRA can be a beautiful thing in the insurance area.

I like your favorite words. Some of mine are oregano, lingerie, balance and grace.

steviewren said...

Angry and incredulous and *&%$* would be words I'd be throwing around. Yep, it's time to get proactive.

Lavinia said...

It must all be so bewildeirng, like going through a maze. Turn which way...right? Left? All these doctors, nurses, technicians, specialists...communication is vital, between themselves and with you. Hold tight, Debby, there is light at the end of this tunnel although I realize that right now, it is very, very dark. (((Hugs))) to you....

Mary Paddock said...

I've seen IRL friends go through things like this (one friend has no kidneys and is waiting for a transplant). From the stories I've heard and the scenes I've witnessed, it looks to me like becoming proactive is all you can do, being your own or having an advocate working on your behalf, to make sure that everyone is talking to everyone is a very good idea. And educating yourself as to your options (and not letting anyone else rush you to conclusions) is the very best thing you can do for yourself.

My heart goes out to you Debby. The hurry up and wait is deeply frustrating and adds to the weight of the fear. You do whatever you can do to control the situation and don't let anyone else dissuade you from doing otherwise.


steviewren said...

I saw your comment on my blog about the picture I took. I think I should make a poster out of the rolling away cloud photo. And under it write "this too shall pass."

jeanie said...

Deb, I don't know what to say. But be assured I am saying what I can to the big man so that you can get through this, 'kay?

Bush Babe said...

I agree pro-active is the only way to go. Not sure about the American health system, but in Oz, I have found that asking direct questions of all specialists and making them realise they are accountable to YOU bring results. In the sense that you become part of the circle of decision-making, rather than simply the recipient of it.

Dash's heart surgeon looked like a truck had hit him when I started asking (nicely but firmly) REASONs for each and every move they were making with his health care. It was the journo in me, and I didn't let up even when SSB wished to hey I would shut up. I NEEDED to understand. Often patients (and carers) are too shell-shocked to take part in this process. But you are smart and strong Deb, and you need to be in charge (to some degree) of what is happening to you.

We are with you. You can do it. I'll shut up now.

Scotty said...

I'd be pissed off at having to become proactive to such an extent, given that generally speaking, we trust in surgeons and specialists to know what needs doing next and that they get it done.

On a lighter note, your anecdote about the microwave and wax reminds me of something funny - I'll put it up on my blog in a minute.