Thursday, June 18, 2009

you can't always get it

Mixed results from my appointment with my oncologist yesterday.

First of all, I was late. As I was riding to the hospital, I noticed that it was getting harder and harder to pedal. When it actually became impossible, I got off the bike and checked. My front brake was squeezing the front wheel. Hard. I think I had been riding like this for some time - and tightening every time I braked. I just thought I was tired and out of biking shape. I solved the problem by releasing the front brake entirely (I'm sure that's not the safest thing). This meant that when I hit the big hill before the hospital, I was already wiped out from pedalling with all that friction.

I arrived at the cancer centre twenty minutes late and a hot, red, sweaty mess.

When I finally saw my doc, he easily agreed to a break in July (which is a good thing because I have non-refundable air tickets and a pre-paid hotel for BlogHer). That went so well that I (without making eye contact) asked for August off as well.

The answer was an unequivocal "No."

I didn't argue with him and I listened patiently as he reminded me that I need to think in terms of a chronic illness that we need to keep treating. I can't really take a (longer) break because we need to keep managing the illness.

I told him that I understood. That I know that the treatment I am on is our first line of defence and that the longer I stay on it, the more chance there is for the second, third, fourth and fifth lines of defence to be developed and improved.

He said, "Well, that makes me feel better. When I saw the note in your chart [that I wanted to ask for two months off], I got a little worried."

I reassured him that I am not planning to bail on treatment, I'm just feeling ground down and fed up.

Dr. G. also reminded me that, "Although, it's great that you have remained with no evidence of disease for so long, there is likely cancer somewhere in your body. Statistically, there is something there." But then he added, "But we don't know enough about Herceptin in the long term. Maybe you're cured. We just can't know."

"Cured." Nice word, that.

And I get it. I really do. And I know that while I was incredibly unlucky to end up with metastatic breast cancer (especially in the liver), I have been fabulously, gloriously fortunate to end up in remission. I know so many other wonderful women (Jeanne and Rebecca, for example) who have had to move to regimens that are harder to tolerate.

I can accept the fact that I will be in treatment for the rest of my life, with only very short and very occasional breaks. I can even make the best of it. And I can feel pretty positive most of the time. I think I am also allowed to get pissed off every once in a while.

On another note, my spouse wants you all to know that the Xmas tree in my back yard is "next winter's firewood." It hasn't been chopped, though. Maybe we are going to have a bonfire in my living room.


JuliaR said...

I am so pleased that you bike to the clinic! Too bad about the brakes, however. But I always think biking gives us bragging rights.

nonlineargirl said...

For mixed results that sounds pretty good. A month off for something fun is good, even if tempered by a realistic assessment that continued treatment is necessary.

I've had that bike problem by the way, Also, low tire pressure makes biking harder.

Nat said...

The only woman I know who cycles to her oncologist. Well done. (I had a similar issue with my brakes earlier this season too.)

Not sure what to say about chronic disease except that it bites and it sucks. And many other euphemisms.


MoninaW said...

I am glad you got the month of July "off." I know how important that is. But I hear is bittersweet because August would have been nice too!

Girl, you tell me you're amazed by me running but you? You're biking to the doc's?!?! Wow!!

laurie said...

Thanks to you all. And yeah - it is pretty good. Thanks to for reminding me that it is pretty cool that I can ride to the clinic (only the second time, mind you, but still).

Jeanne said...

Hey Laurie--"pissed off every once in awhile"? Absolutely. And if you ever waver on your right to be pissed off any time you feel like it, just shoot me an e-mail!

I'm a huge believer in chemo breaks, and I'm so glad that you are getting one. I'm on "chemo light" for the summer, and it's going to make a huge difference in every aspect of my life.

Was your doctor impressed to hear that you peddled to the clinic? I was.


Anonymous said...

I was also diagnosed with metastatic breast cancer from the get-go, with mets in my liver (2 years ago). After treatment with Taxotere and Herceptin, MRI scans since then have shown my liver to have 'no evidence of disease.' Since Oct 07 I have remained only on Herceptin, given every 3 weeks. Just wondering if this is an option for you. I've heard of several other women on an online support group that I often check out have also remained solely on Herceptin after being declared 'NED.' Just wondering why your onc still has you on chemo. Wondering if my onc is not treating me aggressively enough.

All the best on your journey... glad you can take July off!

laurie said...

Anonymous! Who are you? I would love to talk more. You can email me directly, if you like: laurie dot kingston at gmail dot com.

Blondie said...

I can't wait to see you at Blogher!!!!!