Monthly Archives: April 2007

Songs To Go To Chemo By

Here’s what I want: Songs of healing, renewal, hope, moving forward, embracing life. Songs about how things will be alright once again soon. Songs about getting through. Songs to hang on to by my fingernails if need be. Songs to stand on firm ground.

What I don’t want: Sad songs, songs about loss or death, anything loud, raucous, saccharine or trite. Heartfelt is great, cliched or overplayed is not.

When I’m not feeling well I need to be soothed. Calmed. Centered. Reminded that this present misery is not everything that is.

So here are a few that I had in mind (it’s just a start, definitely needs a little help, needs to be a little more upbeat perhaps? – send your ideas on in):

Promise of the Sun – Alice diMicele, Ebb & Flow. Not a fighting song, more of a moving on song, an anthem of sorts: “May I be kindness. May I be patience and hope. May I be healing. Even my enemies I will give my love.”

Whitw Light – Wilco, Sky Blue Sky – “It’s ok to be frightened, there’s light, white light inside of you”

Down In The River To Pray – Alison Krauss, O Brother Where Art Thou, “Oh Lord, show me the way….”

Amen Omen – Ben Harper, Diamonds on the Inside, “between the darkness and the dawn”

Say a Little Prayer – Shawn Colvin, Going Driftless, “Let her get better please do….Put Aretha Franklin on in the middle of the night, because that’ll do more good than any medicine could”

Ella Mae – Pieta, Zoe and Constie Brown, from Going Driftless (just a pretty song)

One day I walk – Bruce Cockburn (a favorite childhood song)

Elvis Presley Blues – Gillian Welch & David Rawlings, Time the Revelator “he shook it like a chorus girl, like a midnight rambler, like you never seen”

I Want To Sing That Rock-n-roll – Gillian Welch & David Rawlings, Time the Revelator

Love You – Free Design, from the end of the credits of Stranger than Fiction

When it’s good – Ben Harper, Diamonds on the Inside

Blessed to be a witness – Ben Harper, Diamonds on the Inside” I am blessed…”

Lullaby – Dixie Chicks, Taking the Long Way “How long do you want to be loved”

I hope – Dixie Chicks, Taking the Long Way

Go it alone – Beck, Guero

Ooh child – Beth Orton, The Other Side of Daybreak, “Things are going to get easier”

Maybes:
Black Tamborine – Beck, Guero “my tamborine is still shaking”

Some Jack Johnson

Some Paul Simon

New Orleans Instrumental No.1 – REM, Automatic for the People

Flours – Britt Daniel/Brian Reitzell, from Stranger than Fiction

Landslide – Dixie Chicks (from a favorite childhood song by Stevie Nicks)

Don’t Panic – Coldplay

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Filed under chemo, quality of life

Inescapable

Actually got to go see a movie for the first time in 8 weeks or so. The movie was “In the Land of Women.” Not recommended. I was hoping for a stupid chick flick and an escape, and then, as one of life’s small ironies, the plot was

– get this –

about a woman with none other than the ONE topic I didn’t want to hear about:

breast cancer.

I kid you not. For some reason I found it slightly hilarious that when I wanted a break the topic followed me. I couldn’t stop smirking throughout the movie (which wasn’t helped by the fact that the movie was VERY bad)….Ah well, all I can say is – I tried to get a break from cancer 24/7.

Which BTW my friend Mariana has decided to rename not the C-word, but Ms. or maybe Mr. Cantankerous. The gender is undecided at the moment.

I’m supposed to name my wig as well, LOL. All suggestions welcome :).

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Chemo dates :)

Ok friends and family – time to sign up! Especially you out of towners – I’d like to save my Portland crew for help with the 6 weeks of daily radiation following chemo.

#1 May 3 – 5 – mom :), Hallie on the weekend

#2 May 17 – 19 – Lizzy on Thursday; Mariana Friday to get the neulasta shot; Claire, Jan, Uncle Mike, Laura in days following

#3 May 31 – June 2 – Mariana on Thursday; Kim, Jeannie? on Friday

#4 June 14 – 16 – Alicia

#5 June 28 – 30 – Heidi

#6 July 5 – 7 – Mary

#7 July 19 – 21 – Jen

#8 Aug 2 – 4 – help needed – possibly Vicki

Love you guys. And I promise that I will get an air conditioner with one of the latest generous donations (thank you so much, you know who you are :)), so that hanging out in my Portland apt. after May will be much more comfortable.

The chemo date job description:

  • Take me to and from chemo, hang out with me for those 4 hours; best case scenario, make me laugh or do crossword puzzles or some such, worst case might involve a bit of medical advocacy;
  • Stay the night, and help me take anti-nausea pills on time, etc.
  • Take me back the next day for a neulasta shot; it might be ok to go home late that day or early the next – but that first night it’s pretty crucial to have someone there to help me take pills etc. in the middle of the night and call my docs if things aren’t going well. Not fun I know, but hey, we can nap all day the next day.
  • Make sure I eat at least a little and drink tons of liquids.

And, I’ll be immune suppressed, so be really wary of getting colds etc. in the week – 10 days before you come visit. Oh joy.

I have wifi, so bring your laptop and any work you need to get done, I’ll be napping or getting my own stuff done. Lots of shops nearby, and Portland’s a very sweet place to visit.

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Wig news & gift update

Ok, I think I used a whole week’s worth of whining yesterday – on to better news:

1) More gifts arrived yesterday! A joke book from my friend Mary, and a breast milagro from my mom’s friend Judy. And a few days back, a funny book and two beautiful silk scarves from my mom’s friend Ami. I’m lucky my mom has such good friends. Now I just need to learn how to tie scarves.

2) Went and met with the American Cancer Society’s wig fitter yesterday, and it turns out the 3 wigs that my cousin gave me (donated by a friend of hers) are wonderful. Well-colored, pretty darn close to the way I have my hair colored even. One of the wigs has long, long hair, and with a headband and the hair drawn back away from my face, I still look like me! I was pretty darn pleased. And yes, one of these days I even promise pictures.

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Filed under breast cancer, chemo, hair loss, support

Dark humor

This post from a young cancer survivor’s blog made me laugh until I cried. Dark humor, how I love thee. In any case, if bad language isn’t your thing, don’t click through (meaning Mom – this one’s not for you, you won’t like it). And it may not seem funny to some, but to me….a huge relief to hear someone tell it like it is.

I have to say, I’ve been having these bizarrely surreal conversations with breast cancer survivors who say that chemo’s no big deal, they went back to work the next day, etc. Nevermind the hair falling out, they loved being bald. Tra la la la.

Ok, I’m being snarky. But I lose my breast, my hair, my fertility (oh yeah, forgot to tell you that, yikes. That’s been freaking me out), and then I get to save my life by killing the cancer off and possibly almost killing me. With numerous possible side effects, some of which might be permanent. Quality of life, see ya!

If I hear the phrase, “not a walk in the park” one more time I’m going to puke. (Which, BTW, I’ve decided that the cancer club card should include super powers, the favorite of which has always been my mom’s desire to be able to suspend people who do or say something wrong in the air for 10 minutes so they have a little time out. I have this vision of all these people sitting around in the air about 10 feet above the surface, just hanging out wondering what the heck they did to piss someone off.)

Thank goodness for the woman who called last night and said, “Ok, I’m going to tell you how it was for me: it was the worst thing I have ever experienced. In. My. Whole. Life.” And to the other woman who said, “Some days, you’ll just want to pull the covers over your head. And that’ll be the best decision you’ll make all day.” And to the woman who took me out for juice and explained, “Sweetheart, as hard as the surgery was – you’re only a quarter of the way through it.” Ok, wait a minute, that’s two surgeries to you – but hey, that’s not enough??!! This BITES.

Can I just say I’m NOT looking forward to this? Oh, I’ll do it. Because cancer will NOT, I repeat NOT kick my patootie. Cancer cells, you watch out, we are COMING TO GET YA. Yep. As soon as I stop freaking out. But we have a date, you cells and I: May 3rd, 1 pm, be there – or better yet, don’t be there. But I’ll be there in any case.

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Filed under breast cancer, chemo, quality of life

Port placed 3 days ago

Many thanks to my SIL’s best friend, Simone, for going with me to the hospital Thursday to get this darned port placed. (I feel like I have a plug in me but that’s ok, it’s just an odd feeling. The port will allow blood to be drawn and chemo injected without poking up my arm.) And to Hallie for hanging out with me there that evening, and to my Uncle for picking me up the next day. It all worked out well, and now I have two weeks for the port to heal before chemo.

I can’t imagine having gone from port surgery to chemo the next day (per the surgeon’s original plan), as I was so sore and in so much pain from the surgery that that just sounds like pure torture to me. I wouldn’t even have had a chance to recover from the general anesthetic – and how exactly does healing work anyways when chemo is killing off the fast-growing cells? Doesn’t healing take place through those cells?

Moving slow today, my Aunt Nancy is here taking care of me, but we’ve managed to make several meals, go for walks and keep up on the dishes, so life is good. I woke up achy and with a small fever but it seems to have broken with ibuprofen, so that’s great. (Don’t worry, I did call the doc he said actually to get out and breathe more, that fevers sometimes come up post general anesthetic if one doesn’t breathe deeply enough.) I felt so bad this morning though that I had to take it an hour at a time – you know how it is when you have a really bad day, and at some point you just say to yourself – thank goodness, tomorrow is a new day. A new slate, I’ll just start over. Well, I’ve done that with every hour of this day, just being in the moment and things have gotten better. A two-hour nap helped loads too. 🙂

On the agenda for this week and the next: a wig fitting, mind/body support group, physical therapy, meeting with my new primary care provider, an acupuncture appt for mastectomy scar pain, a 2nd opinion oncology appt, a gynecological oncology appt (just to be on the safe side), a bone density scan, and the pre-chemo shopping for biotene and the like. Still trying to figure out a nutritional plan for chemo that will protect my gut lining (mouth sores in chemo are really part of a whole GI tract set of problems brought on by killing off the fast-growing cells in the gut lining, as I understand it.) Still need to see a dentist, and get in with a pain mgmt doc. A list a mile long, but it’s finite, so it will all get done. Plus I plan to work as much as possible, as it’s such welcome distraction and I’ve been enjoying it SO much. It’s just a joy to do something normal.

Anyways, that’s the scoop – so far, so good, as surreal as it all may be.

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Filed under breast cancer, support, surgery

Chemo – getting sicker to get better

So in order to get really better, to chase down any of those icky cancer cells that may be lurking in my body looking for another place to take hold, I have to get a lot sicker so that in the end I’ll be better. So – deep breath – on May 3 I’ll start chemo. (This next week I’ll have to go get a port installed, which is a minor surgery. It’ll save my veins, but still, yikes.)

The chemo for my invasive cancer is AC ± T – Adriamycin (chemical name: doxorubicin) with cyclophosphamide (brand name: Cytoxan), and then Taxol (chemical name: paclitaxel). The drugs sound terrible, with potentially awful side effects, but I have to tell you this: my naturopath was glad that I decided to do it. She sees too many cases of cancer coming back, and that’s even more miserable.

Chemo treatment looks like this: every two weeks for four cycles, I’ll get Adriamycin w/ Cytoxan. After that’s done, every two weeks also for four cycles, I’ll get Taxol. I’ll sit in an infusion room on Thursday afternoons, and on Friday for the first 4 times (I think) I’ll get a shot called neulasta, to boost my white blood cell count. I may feel amped up because of the accompanying steroids, but then the neulasta shot will likely lay me flat. So Thursdays may be ok if the nausea is kept to a minimum, and Fridays will be slow, and Saturdays may be a pajama & movie day. If things go well, I’ll be back to work by Monday or Tuesday, albeit slowly, and by May 10 will be feeling better we hope, and then May 17 it’ll start all over again.

I’m told the A/C combo will cause me to lose my hair, so by May 13 or so I’ll be bald. When I first heard this, I burst into tears. Understandably so. And then the next day the lightbulb turned on: “Wait a minute, I won’t have to buy shampoo! Or conditioner. Or blow dry my hair! Woohoo!”

By the time I turn 40 in February of 2008, my hair will be a few inches long, and likely curly. In the meantime, I’ll wear a lot of hats and scarves and may even put on a wig now and then.

I was feeling pretty freaked out about all of this until I went to the Young Survivors Coalition meeting last night, and met 12 strong and beautiful women in various stages of breast cancer treatment, and they all rocked. Most were in their mid 30s. Super bright, accomplished go-getters who in some cases had had to really advocate hard for themselves in the face of docs who had dismissed lumps. Even bald, they were still incredibly gorgeous. With really good taste in hats and scarves!

So, if you have super-cute hats or scarves lurking around, send them my way. Just remember that I have a big head — LOL, of course you all knew that. 😉 I don’t like things scratchy or itchy, so soft is good. Cotton is good, washable is good. In terms of colors, think summer (greens, browns, apricot, light blues), things that go with linen. The treatments will last 16 weeks: May, June, July and the beginning of August. In September my hair will start to grow back.

For anyone who is sad or freaked out by chemo – I was too until I met these incredible women last night who’ve already gone through this and are doing great. Also, because we had my tumor tested by Rational Therapeutics, we know that the A/C & T combo is one that my cancer is sensitive to. This WILL help me get better – and avoid the cancer cells ending up in my liver, lungs or bones, which would be really really terrible. I’m really lucky this cancer was caught early, when it was just in the breast and one lymph node.

The stats from adjuvantonline, as I understand them, given that my cancer was stage 2 (early), grade 1 (or 2, depending on how you read the path report), ER/PR+, her 2 neu -, IDC, etc. are – and hey wait a minute, stats can be scary; remember that this isn’t me, these are just stats and mine will be better, ok? big hug -:

without any therapy at all, a 17% mortality rate; with therapy (chemo & hormonal therapy), 6%;

without any therapy at all, a 36% relapse rate (meaning the cancer shows up in liver, lung or bones, or if you’re lucky, breast); with therapy, 10%.

That’s with the #s run interpreting the grade of the tumor as grade 2. With grade 1, the stats are better. And my personal stats will be even better, because of the Rational Therapeutics sensitivity testing – the above stats are for women who may or may not have been responsive to the A/C + T chemo, and we know that I will be responsive to it. Plus, the adjuvant online #s don’t include radiation at all, and I may go for radiation as well, though that remains to be seen.

Anyways, when I got the news on Thursday I stomped around and had my own personal grumpfest on Friday as well, and then I’ve gotten progressively cheerier since. It’s only 4 months! 4 beautiful months here in Portland, and my friend Mariana will be here for two of them, so that’s great.

And hey, anyone who wants to come visit and take care of me, you are more than welcome!! Come take me to chemo and watch movies with me while I recover.

The dates when I will need care and want company are:

#1 May 3 -5

#2 May 17 – 19

#3 May 31 – June 2

#4 June 14 – 16

#5 June 28 – 30

#6 July 5 – 7

#7 July 19 – 20

#8 Aug 2 – 4

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Filed under breast cancer, chemo, hair loss, support