I should write more when I’m well. My last post was a little dreary, I’ll admit. I just thought you should know how it’s really going, since so many ask me what it’s like. I spared you some details that I hope none of you will ever know. Some things are better left unsaid. When I feel really good, you know, well enough to post something of substance, I usually have about 36 hours before I know I won’t, and I cram it full of life. Doesn’t leave much time for writing.

I am doing better. Not awesome, as my friend Nate put it so well, but better. It’s a relative term around here. Measured in fits and starts. One minute I am bouncing down the stairs after the dog. The next minute I’m creeping up them, almost too tired to make it to my bed. It’s how it goes. This last (LAST!) round of Red Devil absolutely leveled me. I don’t know any other way to describe it. A secondary infection took over my body the day after, which compromised a lot of things – like my ability to take compazine for the nausea, or prilosec for the the lighter-fluideasque reflux. Certainly no sleeping pills. I was delirious. I was miserable. And thankfully, I don’t remember much.

For the first time since this whole thing started, I have started to doubt how things are going. It’s impossible to describe the weight of this. How it grows with every day, the knowing, the not knowing. It’s not just about being sick. There are a lot of other things that happen in you, around you, for you, without you. There’s no anger bubbling up. Not at all. Some frustration, restlessness, resignation… I’m a girl who needs a plan, and this is just not going the way I planned. How could anyone not feel a little sideswiped? It comes and goes like the tide. This past week I was grateful every day when I opened my eyes and was still breathing. That was big. Ah, the little things.

I have not been well enough to take photos, so this post will lack a visual. (However if I did, it would be a photo of the stunning orchid my friend Duncan brought by to keep bedside) What I would like to do instead, is impart to you how wonderful it is, when I feel so incredibly sick, to know that there are so many incredibly wonderful people out there – those of you I know, and those of you I have yet to meet, who are praying, cheering, chanting, yelling, throwing things, just for me. I feel it. I need it. This is a lonely planet some days. And there isn’t much anyone can really do except put a good thought out into the air. For all of you who email, text, post, comment, call, send cards, letters, little tokens… I am grateful, even if you don’t hear back from me. Thank you for everything you do!

Despite the doubting moments, I’m committed to this project. This is just a fling I’m having with something dark and dangerous. Lord knows, I’ve already had a few of those and I did just fine.*wink*

I’ll be awesome… soon!

I hardly have an ounce left in me to type, but I feel as though I should explain how this is going. Not well. It is happening. Exactly like they said it would. I would be sick. And then I would be sicker. And the good days would grow shorter and the bad days would be so long you would wish death just to have them over. Here I am, wishing there was a different way. A better way. This is the only way not to die, and they are killing me.

You can say you’ve been tired. You can say you’ve not felt well. In fact, I know that I have myself, had the flu so badly, worked myself into such a state of disrepair, that I too, thought I knew what it felt like to be hit by a bus. But no. You don’t really. After they start pumping you with chemo, and then steroids, and then more chemo, and then blood cell boosters, and then more fluids, for hours, your stomach swimming, to the point you start swelling up, hallucinating, grinding your teeth, visualizing yourself just grabbing those tubes and ripping them out and running away screaming… you cry all the way home because you can’t believe that after all that now you can’t feel your fingers, your skin is on fire, your head is splitting open, your hands tremble uncontrollably and all you want to do is throw up. You wake up a few hours later and try not to vomit but the excruciating bone pain that radiates across your chest, your arms, your back, your legs… exhausted, your legs don’t work and you can’t get to the bathroom, and you can’t roll over, you can’t find comfort in any place, the room spins without reason. And then you’re soaked in sweat, crying again because this is nothing a body should suffer for this long and it’s terrifying to know without a doubt that you have to, that there are still months and months to go. People talk too loud, too fast, asking questions through a fog that wraps itself around your brain and keeps the words from coming and the thoughts from staying. You can’t chew. You can’t swallow. Your mouth, your gums have been reduced to raw flesh. Chemo seeps out your eyes and glues them shut. Days and days go by like this and you can’t remember what day it actually is, what time it actually is because your eyes are closing again. You wake up and it’s all still just as it was. Miserable. And there’s nothing anyone, not one single human being with any sense or not on this whole earth, can do about it.

I don’t tell you any of this as a way to summon pity or elicit encouraging comments, although all of you are so kind and wonderful and every cheer counts. This is just how it goes right now. Not well. And you’ve been asking, so…

My kick-ass friend Ezra says we are not heroes, and we expect no medals of honor for bravery. That we don’t fight, we just keep getting up. He knows a bit about this, and no matter how miserable this gets, he does. So I will.
~A.

You can watch Geneve’s “Chemo Day” Slide show HERE.
*photo by Geneve Hoffman

You drive your shoulder in, and you fight. No matter the cost. You don’t need words. You don’t need anyone else to acknowledge the battle. It is yours alone. And you do it. You do it.

Today I realized that I shaved my legs a few days ago and it hasn’t grown back. When I had a little V8 moment about how great this was, I brought my hand back down off my head… with a fist full of hair. Oye. I mean, no eyebrow plucking, no lip waxing, no shaving armpits, legs, bikini lines. All that business sounded like a bonus when I started to think about the future of my hairless body. But the reality is that I am not ready for my actual HAIR to fall out. And it has pained me greatly these last few weeks to know that when that happens, there is no denying anymore that this is really happening. The little girl, who had a little curl, right in the middle of her forehead is gonna be bald. Oh, and if you didn’t know this about chemo… when your hair falls out, it hurts.

Cancer strips you of control when it comes to just about everything. It’s powerful when you find the one or two things that you can actually call the shots on. So, this past weekend, after a fun Saturday night out in Harvard Square with my locks soaked in rain with a side of burrito drippings, beer and cigarette smoke, my gal pals and I had us a little Sunday brunch hair pahty. Listen, if it’s gonna go, it’s gonna go on my terms. We met at Sugarz Salon in Kittery, with yummy foods and lots of Prosecco, and commenced to discuss with the Sweet Riannon the best of the worst kind of short hair cut. We decided to go as short as I could possibly stand it, and with the collective energy of a few of my bestest friends and one who is a professional photographer, we commenced to work our way backwards through a series of shorter and shorter cuts, until we were at the end, and I had gone from shaking uncontrollably to laughing, too, and wondering how this long red hair had turned into this sprite little elfie look. It was so NOT ME. But I had done the very best thing I could do for myself which was to just say, “This is going to take some getting used to. And it is here.”

And here it is…

Riannon, Kierstyn, Rachel, Gabe, Holly, and Geneve… Thank you, my Lovelies. Thank you.

~ Photos by Geneve Hoffman (and there are over 100 that I wish I could post here! They are so great!)
~Hair and products (like cute little hair clips!) by Riannon at Sugarz Salon

I caught a glimpse of it this morning in the mirror and startled myself. An instinctive brush to the chest to get it off me only resulted in a very distinctive reminder that (fuuuuhhhh!) it isn’t going anywhere. My chest port is in and it’s staying in for a while.

Maybe the best reaction to seeing my port for the first time came from my five-year-old nephew, Drew. “Auntie! What the… What IS that?” If this five-year-old had a sailor’s vocab I think the pause may have quite rightly been an f-bomb. It would have been the cutest f-bomb accompanied by those bright eyes and rose-colored cheeks, and it was certainly warranted. Being the best Auntie I would not have gone for the soap or told his mother. Nope. Sometimes, when the seat belt hits me just right, I drop a few f-bombs, too.

“Well, it’s where Auntie keeps her super powers.”
“Oh, OK.”

And then he was back to rigging my doorknob with a pulley system that would close it on me with a tug from downstairs.
“Hey Auntie! C’mere!”
Slam.
It’s his favorite trick.

It’s true, this foreign object that has been stuck in what little flesh I have, right where one might don their “Hello My Name Is…” sticker, is how I’m planning on taking care of business. I can’t say I’m happy it’s there. I mean there’s one unwanted lump already in my chest, but this one you can actually SEE, and it’s a constant shade of green, from the 2 inch incision, all the way up the little tube that is also under my skin, to the puncture wound in my neck. The nurses call it a “healing” bruise. I call it gross. It’s a pain in the ass to find a shirt that doesn’t rub it raw, and sleeping on my left side is out of the question. The tube that snakes it’s way over my clavicle and then down my artery to my heart is rubbing against my windpipe every time I take a breath and you betcha I can feel it. If your stomach just did a little flipparooni, I’m right there with you. Every time I catch a glimpse. Or hug someone.

It’s a handy little thing, despite how it looks or feels. They push a sewing machine-sized needle through my skin and into the port to administer the “red devil,” draw blood, pump radiated dye for CT scans, you know, that sort of thing. (What? That’s what they do!) It saves my poor arms and hands from being stabbed multiple times resulting in bruises that make me look like a rookie junkie. It saves me from begging nurses to please please please use lidocaine to set an IV. It saves me from blowing a vein when the adriamycin finally eats them away. As bizarre as it is to watch them just pin that huber needle right to my chest like a badge of honor, I am just as grateful for it. And of course, it’s coming out the same way it went in, sooooo…..

While it has put an end to my sun salutations for a bit, and kept me from sailing past the volcanoes of Montserrat this past week, that’s a small price to pay, I figure, for having super powers. And if I can lend any bit of humor to something so.not.funny., I have named the annoying little squiggle worm tube thingy I saw after this week’s CT scan, Kevin. Why would I name it Kevin? Well, because my chemo nurse’s name is Allen and I like him, and Marcel’s dog’s name is Allen and I really like him.

Wearing it proud because there is no other way.

Hello My Name Is…
~ Ali

Our second evening in our new home had been designated as our “meeting” night with the folks who run this place. We were to meet at 5, introduce ourselves, and basically ask any questions we might have. Since we had already been living together about 24 hours, we were past the introductions (and had more questions than could be answered in one night), and so I suggested that since we were all going to be together at the same time, it could be a family dinner night of sorts.

I guess Gal Foodie can’t help herself.

I trekked off to the Kaiser, the local grocery store, and for the next 2 hours (yes TWO) I proceeded to try and buy pasta and sauce and vegetables to make a dish that would feed about 12 people. It was exhausting, but so much fun to peruse the aisles of everything German. There was the Barillo pasta and the Bertolli sauce, but the rest of it was pretty much a mystery. I’ll write a bit more in a separate post about my food excursions. Let’s get back to dinner.

I arrived in the kitchen and started to cook. I finally felt at home. I was doing my thing. I was feeding people. It was as familiar as I could get. It started to smell great. More food arrived from the other kitchen down the hall. People arrived. Wine arrived. The table was set. We sat down.

We’re all here. And for the next 7 weeks, we’re all family.

(from L to R around the table) Ariel, Caroline, Susana, Ron, Gary, Julia, Rudolf, Antje, Johannes, Ryan, Chris