Therapy 2.1

Today was the first day of Round 2, starting with 5 days straight of chemo. In other words, "the hard week." Monday's chemo is done. 2 pokes today - the first IV had a weird problem and gave me pain. Because my veins are so small, and not very accessible and only usable in my right arm (so as not to disturb my clotted left), my nurse Shirley left the second one in and is hoping to use it again tomorrow. This also means I have one of those stylish fishnets on my elbow tonight, which I think goes with my super-cute (what Allison calls my "street urchin") hat. I got to put another sticker on the front of my binder (my visual count of chemo sessions), and got to open another present from my Happy Basket. And when I got home all I wanted to do was take a nap. It's still amazing to me that I can sit in a chair all day (it was a 9-3 kinda day again), doing almost nothing, and come home feeling so wiped out - although today was not a hit-by-a-freight-train feeling, more like hit-by-a-compact-car. I would so much rather be exhausted from climbing ladders in the Tucson summer.

So, tonight's hope is for a good sleep and that my IV is usable tomorrow.

Gone Dancing, or Social Side Effects of Cancer Part II

I did it: Yesterday evening, despite some pain near my incision, I went out to the local contra dance (if you don't know what a contra dance is, follow the link, watch the video, and then go find one near where you live to try it out). As my hair is now all between 0" and 1/8" short, depending on the patch, I wore a headscarf, and along with the Best Contra Dancing Dress Ever, I didn't totally have the "cancer patient look." I arrived late, left early, and sat one out, but I did dance.

Now, I've been contra dancing in Tucson enough over the past three years that the regulars know me. They've noticed I've been gone several months (the first of those several months had nothing at all to do with Grazelda), but this is a group I don't have much email correspondence or other contact with. So there they were - a bunch of people who know who I am and mostly haven't heard I have cancer. To add to the awkwardness, my encounters with each were mostly limited to the 8-16 counts of a swing or an alamand right. And when you have less than 20 seconds to chat, the proper response to "Good to see you! How have you been?" is definitely not, "I got cancer. How are you?" Needless to say, I lied a lot, or at least made a lot of gross understatements.

Why did I avoid telling people? Yes, partly because there just wasn't time during dances, but there were times in between when it could have been appropriate. Partly I didn't want to draw attention to myself because these people were gathered and hanging out with me (and each other), not because I have needs, but because we all wanted to dance. In fact, they wanted to dance with me, not because of the crummy things my body is going through right now, but because of one of the things my body does best: dancing.
I also didn't tell people to avoid putting them in an awkward situation. If I came out to them as a person with cancer, currently going through chemo, they'd have to feel sorry for me and express sympathy and wonder more about my hair and worry about my energy levels and be delicate with me on the dance floor. Ugh.

There was one man, though, as we were waiting for the dance to start who looked at my head scarf and asked point blank, "Is that a fashion statement or chemo?"
[Now, before you suffer outrage at this question, you should know that this man is also my standing waltz partner, the one person I usually spend the 3-5 minutes of the first waltz at each dance with. I know a little more about his life and he a little more about mine than your average "trail buddy," and he's familiar enough that his tendency for, um, straightforwardness does not surprise me.]
Back to the story. I wish I would have responded boldly, "I don't do fashion statements." But I didn't. I was grateful for the question, maybe a little shaken that my condition was so obvious, when here I'd thought I was blending in so well, and I told the truth straight up. He said he was sorry and asked about my prognosis and how long I'd be in chemo. Then it was time to dance. And it wasn't awkward.

In any case, it was good to be out, good to be dancing, and now I'm dealing with the possibility of sore muscles from that adventure. I'll take sore muscles over nausea, fatigue, and bone pain any day!

The Hours In Between

Today I took my sister, who has been staying with me for the past week, to the airport. I will miss her, but she is coming back in a few weeks. Now, I really don't want to give the wrong impression here, so let me say this first and say it loudly: I am tremendously grateful for family and friends so committed to being here in Tucson with me and for them to be able to do so. That time I woke up in the middle of the night almost fainting makes me somewhat afraid to spend the night on my own, and who wouldn't want someone to cook and clean and most importantly just be with while I have all manner of crap going on in my body and the corresponding thoughts running through my head?! I also consider myself amazingly fortunate to have family with whom I love hanging out, a lot, for a very long time. None of this post is about being tired of being around the people who have been here.
But, today after I dropped my sister off at the airport, I had about three hours before a friend who was driving in from Kansas arrived. Three hours in which I was alone and no one else knew or was thinking about where I was. For a free-spirited twenty-something like myself, this is a normal state, and it's not normal for me anymore. I guess this is just one of those Social Side Effects of Cancer.

"So, Margaret," you ask, "what did you do with your hours alone?"
And I'm not going to tell you!

I'm feeling pretty good today, maybe a little tired. I have this dream of going contra dancing tomorrow night. I'll let you know if that goes. And my mom comes back tomorrow!!

Thursday

Today I am grateful for:

*going all yesterday evening and last night without any stomach problems
*being able to work 3 days this week
*possibly the best pizza my sister ever made
*naps
*Skype

I'm getting tired of shedding, though getting more disciplined about not pulling it out by handfuls. Tomorrow morning I think I'll get out the clippers. Honestly, I'm not sure that I have the guts to promise a picture of bald Margaret. We shall see.

Cocktails, Caps, and Blood Counts

Today at chemo, Shirley mixed my anti-nausea cocktail better than they did in the hospital, and I took my Ativan when I got home - hey did you know that Michael Jackson was on Ativan too?! it's not what made him die, but it was one of many things he was on - so after a brief rest, I felt well enough to go run some errands.

I've been meaning to go to the American Cancer Society for some time because I'd heard they have a resource room of wigs, hats, and scarves. While my collection is nearing the versatility I desire, I wanted to see what was available and any advice they had. (Like is there a way to get all your hair to fall out at once so it doesn't go all patchy? As the Hungarians would say, sajnos nem). Today we stopped in, and it's still surreal for me to go into a place like that to receive services. I've been living with this diagnosis almost a month now and "the C-word" still hasn't sunk in, as it applies to me. Going often to therapy and sitting in a row of people with IVs in various stages of baldness helps me to feel like I'm part of an "us" rather than talking about a "them," but Cancer Survivor still hasn't entirely integrated into my identity. The people at ACS were really very kind, wanting to see if there were other services they could offer, and they found me a couple hats and another scarf that may even surpass the cuteness of the ones in the previous post. I think I'll wait to post pics, but just know that you don't have to worry about me being bald and cold and un-cute.

That is to say, not only am I feeling well tonight, I'm also feeling a little bit hip. AND I got my blood work back from Monday and my AFP count (which we want to be low . . . like 6. before surgery it was 6620, before round 1 of chemo it was 1786) was 301. Score 1485 points against Grazelda!

Headcoverings

A few days ago I noticed that I could pull out the little hairs on my legs painlessly. Just today it got really easy to do this to my head:


I guess it's just a matter of days till it's all gone and I have to deal with being bald. I thought about going with a wig, and even tried some on . . .




But really, if you know me well, you know I've had a "thing" for headcoverings for a long time, so I think that headscarves and hats will serve me well enough. I've been collecting and currently have an entire drawer devoted to scarves of various sizes and fabrics. Here are some favorites:

This one is from a fellow (less closeted) headcovering enthusiast at church.

One of my Mom's silk scarves from China.

My aunt made this one (and I have a dress to match!). It also models my current favorite way to tie a scarf, but it takes a 36" square piece of cloth.

This is my only hat, knit just for me by a guy in my sewing circle. His daughters picked out the fabulously (and soft) pink yarn, and I look forward to wearing this when I don't feel like having a bun at the back of my neck.

Tomorrow is Bonus Bleomycin Wednesday, so I'm hoping for a good IV, and the right kind of drugs to keep the nausea beast at bay.

How Margaret Got a Prayer Shawl

The Mennonite community I'm part of here in Tucson is Shalom Mennonite Fellowship. It's a small, vibrant, spunky group that does a lot of good work and has a lot of fun together, too, often times on Sunday mornings. Shalom of Tucson has a sister church, Teusaquillo, in Bogota, Columbia, with whom we exchange visits at least yearly and stay in communication through the relationships that have developed. When I first started attending Shalom I was impressed with the importance placed on this international relationship between churches, something I'd only read about in theory. We light a candle for our sisters and brothers in Bogota every Sunday, and every Sunday they light one for us.

While I haven't been to Columbia myself, a couple years ago a woman from Teusaquillo named Adaia volunteered a day with Community Home Repair during her visit to Tucson, and was sent out with me. We fumbled through the language barrier to do some electrical jobs together, but I hadn't been in touch with her since. This summer, a family from Shalom was in Bogota visiting when I discovered Grazelda, and they shared the news with the friends that had gathered with for supper. Adaia was among these, and immediately offered to pray for me at the monthly healing service that was to be held that week.

So it came about that yesterday, feeling well enough to go to church, I was anointed with oil and presented with a prayer shawl, originally belonging to Adaia, that had been prayed over by the fifty-some people at the healing service in Bogota as well as the people at Shalom.

While Shalom is unaccustomed to anointings (or maybe it's just me - I had to be told explicitly, "Sit on the box!"), the healing ministry is what comes naturally to our sister church. And regardless of your thoughts and experiences of the "God Paradigm" (thanks, Myron), it is a powerful thing to be so cared for by an entire community I've never met, except one day of electrical work. I am awed and grateful to be connected to so many people, from whom I'm usually separated by geography, culture, and language. And we are all hoping for healing.

Oh yeah, and I'm feeling so good today I went to work. No carrying shingles up the ladder, but I drove myself around and sat in the office working on writing grants. Week three (in the chemo cycle) is a good week.