Better

Maybe it was my two-day camp-out in a healing garden, with accompanying campfires, music and healing, or maybe it’s the low-dose sustained release morphine, or maybe it’s knowing that the end to chemo is in sight, but I’ve been doing a little bit better. The steroid crash is still no fun, but at least it’s not the uncontrolled sobbing from last time. Some unexpected tears, but that’s the norm for cancer treatment as well. And while my eyelashes still seem to be falling out, my head is covered in stubble – and the idea of getting my hair back, well that makes me very, very happy. Walking around with a small secret smile on my face. Plus someone at the acupuncturist’s office told me I had beautiful skin. Which was a blatant attempt to make this cancer girl feel better, but hey, it worked. I’ll take it!

“A wild ability to endure misery”

My dad recently handed me a gift in an envelope labeled “Amanda-Strong-As-A-Horse-M. (lastname)” and told me that the women in our family excel at getting through. Along the same lines, my friend Celina just sent me a book that cracked me wide open with its beauty: “What the Ice Gets: Shackleton’s Antarctic Expedition, 1914 – 1916 (A Poem).”

The poem is about an expedition of 28 men, whose boat – The Endurance – gets “lodged in the ice….at the mercy of the floes. Ship and men drift ten months, and then the ice simply stoves everything in, the ship goes under, and the men are left stranded on the shifting floes.” And yes, they live to tell the tale, and what a tale it is.

The back story is equally compelling to me: the author, Melinda Mueller, used to teach at my highschool, and, a while back, she had cancer. The story of the expedition was what got her through chemo. She writes, “I often thought that if the men of The Endurance could do what they had done, I could very well get through what I was facing.”

The book begins with a description of the expedition members:

…All of them posses a wild ability to endure misery. The leaders among them…are built from unflagging will, intelligence, knowledge, resourcefulness, experience, courage, a humor the ice cannot imprison, and yes, the capacity for endurance.

More later I’m sure, but for now, I’m off to read, and to treasure the book word by word.

Oh yes, the update: taxol is better than A/C chemo, but it’s still not fun. In the least. But I’ve had great company (many thanks to Heidi and my brother for coming to visit and take care of me) and that’s what gets me through.

PJ day

One day at a time, and I’ll feel better tomorrow, right? Starting the post-steroid crash, and everything just feels icky. Nausea. Blech. Off to take a bath and go to bed. And thank goodness for reruns on abc.com.

And many many thanks to my friends Alicia and Scotty, for flowers, a clean house, yummy food, clean laundry….and for being there. It makes such a big difference.

Also, looking forward to seeing my dad tomorrow! First time since the appt where the oncologist convinced us to do chemo – he had a knee operation a week after I had my surgery, and we haven’t been able to travel to see each other, so I am SO glad he’s able to come up. Distance is really hard.

A/C # 4 of 4

Yep, almost done with the Red Devil! What a milestone. I’m looking forward to visiting the Washington Park Rose Garden at the end of the day. Chemo is so icky that I tend to want to fill my memory with something really beautiful instead of the chemo, so that I have something else to hold in my mind for the day. Plus my friend Alicia is here to keep me company, a definite positive.

A/C #3, Day 3

Day 3, chemo round #3, with friends from Boulder, Seattle, Ottowa and Vashon. A wonderful day. That’s me with my new wig on the far right.

Caring

One of the blogs I read these days is the NPR Cancer Blog. Today’s post: Caring Can Be the Toughest Part.

Ahh….the worrying that goes on around me. It’s almost too much for me some days, but it’s natural, normal, and in reality can’t be any other way. It is what it is…and I worry about me too. These days it’s all I can do to get through each day: drinking my 2 liters of liquids, eating 3 – 5 times, going for a walk, doing some work to keep my job and health insurance. Making sure the house is semi-clean. Making it to my doctors appts on time. (In the past week, for the first time in my life, I’ve been late almost every time. Moving fast is just not in the vocabulary these days.) It’s all about the basics.

Returning phone calls and emails have for the most part gone to the wind. I can only do one thing at a time these days, so multitasking has gone out the window. So, if you want to talk to me, please try and try again, because I can’t keep up. And even when you do get a hold of me, if I’m actually eating, I prioiritize that. And so on….I just can’t do it all. And the thank you cards…..the backlog is about 40 cards long, I just can’t do it. Know that I love you and consider yourself thanked.

So, what are the benchmarks for a decent day? Being able to be out and about in the world a little, and not inpatient. That’s a huge one, one we’ve taken for granted so far. Let’s love it while we’ve got it. Hmmm…what else? Not throwing up. Having moments, at least a few a day, where I forget about the ickiness that is chemo. Having a little bit of joy. A little bit of distraction into the normal world.

And know that every day my very cells scream the wrongness of chemo, and so it’s pure willpower that keeps me in treatment, that, and a vision of a full head of white hair when I’m 80. I’m going to be a great 80 year old. 🙂 But in the meantime, it’s icky and hard.

So that’s why presents like Courtney’s lift the spirits SO much! She sent me a handbag of with pictures of women with cowboy hats in the wild wild west: “To carry all your various belongings/snacks/cdsto and from the doctor/yoga/etc. These ladies are so spunky and YOU ARE. You’re a swashbuckler, meeting cancer in a saloon and taking it down with a quick draw.” What a great image – except that taking it down while IN my body is not exactly ideal. Anyways, thanks Courtney!!

The light at the end of the tunnel is that this is finite – this is A/C treatment #2 of 4, so half way done. Then on to the taxol chemo, but that could be a different story all together. We hope!

Grand follicular exodus :)

It’s begun! Running my hand through my short, short hair and it comes out….YIKES. Off to shower in a bit once Mariana is awake and can come over for coffee and support. This is Day 4 of chemo #2, pretty shaky but taking things an hour at a time. My hair hurts, which is why I’m up this early.

Many thanks in this past week to Lizzy and Mariana for taking me to appts, and to Karen, Jan and my uncle for food, and to all for TLC. And a special thanks to Hallie for 2 more excellent CDs, and to Jan for Balkan music as well.

Quick update on team care:

#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 – possibly Vicki

So far, so good

Had my first A/C treatment on Thursday, definitely felt drugged, but the nausea meds work. Knock me out, but they work. So far, so good. I think my mom and I both expected something more dramatic – Friday morning I was fine and at home doing paperwork, and sent mom off to run her errands, and she said “Well, you haven’t exploded yet! So everything must be ok.” Which is how I felt, like something dramatically terrible was supposed to happen and it didn’t. No praying to the toilet even. 😉

She said I went grey a couple of times, and that my cheeks were flushed, but that she could see the life force flowing back in when I woke up from a nap. I was so happy to have her here – there’s nothing like your mom xoxoxo, ya know? Dads are pretty wonderful too, but he’s recovering from a knee operation and a virus, so maybe a different time.

Mom headed home today (day 3 of chemo), and Hallie took over this afternoon, cooked a yummy lamb roast, which I actually ate. Even had seconds. Fancy that, I didn’t expect to have an appetite at all. I’d been told food would taste funny after chemo, but no. It still tastes good!!

Hardest thing is buying comfort food without sugar or corn syrup in it. Oh my. Back to basics we go.

Knock on wood!

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.

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.