Wednesday, August 26, 2009

Trigger Happy

I haven't told you, beloved blog readers, because I don't want to be worrisome, but I've been having pain where my tumor used to be. It's been an ordeal to find an oncologist here in San Francisco- they won't assign one to you unless you've seen a GP, which I don't have, duh, because I have cancer. It took weeks to get a referral from my own oncologist back in Sacramento, but finally, I was able to get an appointment on Tuesday.

This was my first time in SF oncology and, um, talk about triggers. They make you wear a wristband regardless of whether you are getting chemo or seeing a doctor, while in Sac they only banded me for chemo. So, as you can imagine, the band sent me into panic mode and tears started welling up in my eyes.

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Fast forward to the doctor visit, they don't think my pain is cancer related since I was NED on a scan 3 weeks ago. It's probably scar tissue, but we will "watch and wait" (don't you love that phrase?). I asked when I could have my port taken out, and the onc said I've got to wait until my next scan. "But when is the last time you had it flushed?", she asks. "Uh, May?" I mutter. Oh crap, I forgot about port maintenance. "You need to get it flushed TODAY." Double crap. I can't face the infusion room just yet. But... responsibilities and such. So I sit in the ugly mauve alcohol soaked recliner and try to keep it together.

No such luck. I start hyperventilating and sobbing, trying to explain to the nurse that it's the first time I've been back since chemo. She just looked sorry for me. I sucked it up towards the end and got my saline/heparin injection just like I've done a million times in the past. I was numb throughout my treatment, but now that the trauma has settled in I'm a nervous wreck during such small procedures. I hope it gets better.

On the positive front, I am getting ready to start my senior year of school, the one that I had to quit in leiu of chemo. I am excited. Let's hope I make it past the first class this time!


Kate Burton said...

Xanax darling, if you can tolerate it, will be your best friend in follow up land. Best of luck going back to school.

Jessie O said...

xanex is pretty great for those sort of days--even if only when you get home. last week i transferred to a new onc in berkeley and just opening up my case for review again was traumatizing--despite the fact that i'm on routine maintenance. for some reason being in a NEW treatment facility was extremely triggering and disturbing whereas i had gotten used to it in Seattle. anyway, my fave anti anxiety miracle is klonopin-kind of a silver lining.

Anonymous said...

Kid, you make me feel incredibly ridiculous and petty for feeling shitty about my own health problems. You are the definitely the strongest person I've ever come across in this life. Doesn't feel like it, I know. Just trust are.

Sincerely...I wish I was more like you. Keep kicking anxiety right in the nuts and you will win :)

Levi said...

I've been at the Courageous Women- Fearless Living retreat in Colorado. I'm only reading today (tuesday).

If you need someone to go with you, I'll go - just give me a heads up. (I'm sure going to a doc appt with a total stranger would be a blast).

It's best to take someone if you think you're going to panic. ANd yes, Kate and Jesse are correct - xanax or I take the generic lorazepam works well for anxiety.
Too bad random strangers have to write your prescriptions for you via your blog.

Are you at UCSF? Because I know they have some good programs there for cancer and freaking out.

Joan Calvin said...

Cancer is a bitch! Just found your blog and I'm sorry. I had ovarian cancer last year. I am a pastor and a parishioner had cancer. I went to be with him for his bone marrow test (actually it was his wife). It was the first time I'd been in a place filled with people waiting for chemo since my own ended. I almost couldn't sit there to be with the wife. She told me I could go and I was out of there like a shot. Not very pastoral, I'm afraid.

My thoughts are with you as you battle this monster and the fears it brings.

Keith said...

anyone interested in talking about bladder cancer in a young man (me) who is also a physician I am happy to chime in - thanks for the blog - it is important

Kairol Rosenthal said...

I hope you listened to Fresh Air with Terry Gross today on NPR. (If not check out the Sept. 8 archive.) Iva Skoch and I were interviewed by Terry and Iva talked about your blog. I hope it sent a kagillion adoring readers your way.

And oh, I have been there and done that with the whole lack of GP in SF, the Kaiser wristband thang. They called security on me at Kaiser in Oakland once when I refused to leave the reception desk until someone made an appointment for me. It was not pretty. But neither is cancer.

Hang in there babe!


Anonymous said...

Do you have a twitter account? Would be great to follow you along with reading your blog.

Definitely a interesting story on Terri Gross yesterday. Here is the link:

Anonymous said...

Like the last comment, I googled you after hearing about you on Terri Gorss's 'Fresh Air.' Just finished reading your entire blog, start to finish and to sum it up: You're amazing. Way to kick cancer in the butt. This blog is amazing, it gives life to something so horrible. Thanks for being so open.

Chris said...

I too found your blog thanks to Terry Gross and her great guests. I don't have cancer, don't really know anyone who does and am just someone who is interested in the stuff that we as humans have to go through. i read your blog start to finish and though i know it prob has the biggest impact to others fighting the good fight against cancer, i wanted you to know that it also speaks deeply to those of us who are blissfully unaware of the havoc cancer can wreck. def makes me stop bitching about the ridiculous things i worry and stress about. i'm not sure i believe everything happens for a reason (i.e. that some people have to go through hell so others can learn to appreciate life) but i sure do believe in the power of words and that reaching out and connecting with others does make the darker aspects of life a lot more palatable. i hope you are hanging in there and look forward to reading more.

kaylin andres said...

I wish I could individually reply!! Arg.

Xanax, yes, I will ask my psych about that.

Everyone, thanks for your thoughts and suggestions.

POD- not ucsf, I have kaiser, but I'm trying to sign up for a ptsd/insomnia study, which I think is at ucsf.

to people who found me via NPR: welcome and thanks!

super surgical said...

...Ive always wanted to visit Sac,,

ps. i like how you ended on a positive note :)

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