On going bald: bring it!

It will come as no surprise to many of you that I have a special kind of twisted logic. For example, my Aunt Carolyn reminds me of Tina Turner. If you knew my Aunt Carolyn, you would understand how absurdly and deliciously twisted that is.

Also, I'm thinking about whether the drawers on my new coffee table should face the front door, rather than the couch, because it will look better when you come in the house. Whoever heard of turning a perfectly functional drawer into a decorative one for the benefit of people who haven't even made it to the coat closet yet?

Given all this, it should come as no surprise that I am looking forward to losing my hair.

Whenever I mention that I'll be losing my hair soon, my dear friends and other supportive people-in-the-know exclaim, "The hair doesn't matter! It's so unimportant! The main thing is that you get well!" But they don't understand the power of having a badge.

See, I have a lot of bad days when, for example, I tell would-be elevator passengers that we're going down when we're really going up, or I mindlessly cut people off in traffic because I kind of forget that there are other people around, or what have you. Not surprising, with everything I've been through lately, but of course most people out in the world don't know I have cancer, so they figure I'm a few sardines short of a can, and maybe they flip me the bird.

But when I'm bald, all that will change!

It's like being pregnant. When you're pregnant (hang with me, guys), the first few months are hell because you're tired all the time and you're puking your guts out and the only thing you've got going for you is enormous ta-ta's. But then, whammo! You're showing! And suddenly everybody's holding doors for you and patting your belly (even when you don't want them to) and asking you when you're due.

Aside: Maybe you shouldn't rub my head without asking. When I'm bald, I mean.

Anyway, everyone's nice to pregnant ladies, and I'm betting everyone's nice to cancer patients too. What do you think?

Darkest before the dawn

Lo! I feel better!

Just when I thought it would never end, I actually feel better. Friday was hell on earth. Saturday was about as sick as I'd ever felt in my life (until Friday). Had a killer migraine last night and no good way to fight it off, especially since there are no truly quiet places in my house right now with the dehumidifier running in what used to be my powder room.

And right now...well, I feel okay! Still have a headache trying to sneak in past the tylenol I managed to keep down this morning. But I'm sitting up. I walked outside to get the mail. Heck, I saved Sam from monster Daddy and spun him around once before I decided that wasn't the best idea I've had this week and put him down.

I am thanking god in heaven than I only have to do this five more times, and that I don't have to do it again for 2 1/2 weeks.

Whew.

Chemo

You guys, I thought I could handle this, but right now I'm not so sure.

I had chemo on Thursday. It went fine. They pre-medicated me with Benadryl, Tylenol and anti-nausea medication, then they did the chemo through the port. I felt fine when we left and even had a nice dinner with Dave, Kath and Sam.

Friday morning, I woke up at 5 am with a terrible headache and sick to my stomach. Started my anti-nausea medication, which didn't do shit. Threw up that nice dinner in the kitchen sink at 7.

I hate to be graphic, but it's been awful. I threw up every 2-3 hours yesterday. I finally went to Kaiser last night and they gave me an IV of the anti-nausea goop, which helped quite a bit, but as soon as I got in the car to go home I started to feel wonky again. Tried to take Tylenol for another headache at 1 am, but threw up again at 2.

That was the last time I threw up, and it's now 11:30 Saturday morning. Dave's taken Sam to the park to play. I took a variety of anti-nausea meds in my own made up order and seem to have gotten somewhere, or at maybe it's just that the vomiting part is over, but I'm sitting up for the first time today. So far, Gingerale is not the miracle cure it was when I was pregnant, and the only thing I've kept down is a single popsicle. I've lost five pounds since Thursday.

I just feel so betrayed by my body right now. I guess I should have expected a violent reaction. After all, I tried to poison myself two days ago. But I really thought it wouldn't be this bad. I want to crawl in a hole and stay there until this is over.

Sorry to be depressing, but for now I have to leave it at that.

Winding up

I finally had my appointment with the oncologist on Friday. He brought up the fertility thing, which was a refreshing change from the last oncologist who didn't want to discuss it. I wish I'd seen this guy in the beginning when all of that felt like an option.

It's hard facing the fact that my ovaries are going to take a beating and might not make it. But I've made up my mind that it's not worth the time and the extra procedures right now. I just want to get on with fighting this cancer so I can be here for the kids I have, thanks. And I can't ignore the financial impact.

I never did add up all the costs associated with freezing embryos. (I decided not to proceed before I got to that point). Suffice it to say it was escalating into the thousands, and we weren't sure how much of that my insurance company would cover. It's nothing to sneeze at when you consider that I may not be able to work at the same pace, and in my world, not working at the same pace = not getting paid at the same pace.

That reminds me of the work situation around when Sam was born. See, I decided to just wait and see with Sam. This was my first go-around with a newborn, and I had no idea how either one of us would be. I thought there was a chance that he would be totally laid back and would sleep and gurgle pleasantly all day and I could work for an hour or two during the day and a little more at night when Dave got home, thereby avoiding the hassle (and expense) of daycare.

Ha!

My child is brilliant, wise beyond his tender years, and completely high-maintenance. By the time he was 6 weeks old, it was obvious that daycare was not optional if we wanted to pay our bills. I was freaking out because normal parents do this whole daycare thing the moment they find out they're pregnant! And here I was with a 2 month old baby and I'm thinking, "Gee, I need some help with this!" No way, right?

Well, we got lucky. Or received grace, really, because the universe provides what you need when you need it, even if what you get isn't what you thought you wanted. In this case, what we got was exactly what we thought we wanted - Maria - a lovely, soft-spoken Spanish woman with an in-home daycare 20 minutes from our house who was willing to take Sam two days a week.

My point is that sometimes you don't respond to things the way you think you will. What I learned with Sam is that it's okay to postpone a decision until you're ready to make it, even if your options could be more limited when that time comes. The universe will bring you what you need. If we're ready to welcome another child into our lives once I am healed, then we'll find a way to do that. So, let's get on with it.

Turns out my treatment plan is exactly what the original surgeon and oncologist suggested, but at least now I understand it and I believe my doctors understand it too. (I had the idea the first set of docs were just reading from the playbook. Whether that's true or not, my having that idea was not going to help matters).

Thursday, I start chemo. I have to drive all the way to Largo for my first treatment because the local center has a nurse going on vacation next week. Nothing like getting cancer in August! Dave's going with me and Katherine will pick Sam up from daycare, so the details are handled. I'm worried about it, but it will also be a relief, so on balance, yippee!

So six cycles of chemo, which means I'll be getting my last treatment at the beginning of December, which means I should be feeling better by Christmas! Surgery around the beginning of February, then radiation for six weeks starting in the middle of March.

I was surprised about the radiation thing. You have to go every day, Monday through Friday. I didn't realize it would be that often. The treatment only takes about 5 minutes, but of course, it'll take 90 minutes to drive there, wait, get naked, get treated, get dressed and drive home. That should be super-fun. Maybe with practice (and a lucky draw on the center), I'll get it down to an hour.

Oh, I forgot to mention that, during the first 4 1/2 months (between now and Christmas) I have to go get one of these drugs every week. The other two drugs only go in every three weeks.

So basically, it's going to be hectic.

I've been thinking about things people can do for me, because I'm really bad at letting people do things for me, but I'll definitely need the help. So here are some ideas:

- Spend a weekend (or just an evening, if you're close) at our house keeping Sam busy
- Go grocery shopping for me (I can make a list)
- Bring me food (I'll know more about what I can eat soon)
- Clean my house
- Go with me for chemo
- Organize helpers? lol

Sigh, this is going to suck, but a little overwhelm is kind of my natural state, I guess. I'll get through it, hopefully with grace.

If you feel like helping, let me know what you want to do and let me know when!

Port Report

I had my port put in on Monday. I was terrified. This was my first surgery. Dave kept telling me that I wouldn't remember it, so I was utterly heartbroken when the doctor came in and told me that I would be getting conscious sedation with local anesthesia, which is NOT the same as twilight sedation where they make you so loopy you can't remember what happened.

It's not like I haven't been through this before. After all, I had a biopsy under local anesthesia, and I had to work really hard to avert my eyes from the doctor and all the techs in the small room and what on earth are they doing with that turkey baster? Eyes left: turkey baster. Eyes right: ultrasound screen showing turkey baster inside my boob. I couldn't win.

Still, the biopsy was different. I didn't have time to get worried about it. In fact, I was more worried about not knowing the results of the biopsy than actually having it done. The port implant was different. Intellectually, I knew it was necessary and that I would be grateful to have the damn thing in there, but emotionally, I wasn't so sure.

As the nurse walked me into the procedure room and got me situated on the table, I had visions of that movie Awake, which I haven't seen, but can vividly imagine. That's the one where the guy wakes up in the middle of surgery and can feel everything, but can't say anything. I thought, "I'm way too conscious for this."

They hooked me up to a blood pressure cuff and some goopy stuff like in The Matrix and some electrodes and a heart monitor. I could hear my heart beating on a machine across the room. One of the nurses cleaned the right side of my chest and neck with some runny stuff that, I found out later, painted me orange. Mercifully, another nurse wrapped my entire body, including my face, with blankets and plastic sheeting. I thought I might not be able to breathe and briefly considered having a panic attack, but I was fine. From within my warm cocoon, I heard someone say, "Okay, honey, I'm going to give you some medicine that may make you feel a little sleepy."

Aah, finally. The good stuff. From that point forward, I really didn't care. I want to emphasize that. I really. didn't. care. That concept is utterly foreign to me. I always care, usually more than I should. I didn't care when the doctor jabbed me with lidocaine (which did sting, by the way), or when I felt him pushing the catheter through my jugular vein and into my heart. I didn't care when he was digging around in my chest, making a pocket for the port. I didn't even care when he was sewing me up. I didn't care that I didn't care. Now I care. Now it's creeping me the hell out, but back then I was right as rain.

So the thing is, people told me this was going to hurt like a bitch. And when I say people, I'm talking about my friend Brian, who is also a cancer patient, plus a couple of breast cancer boards where people said "My port still hurts after two weeks! Is this normal?" But it really hardly hurt at all. The dressing, which was creeping up my neck and pulling on my skin, was worse than the pain at the incision site. So there's that.

This Friday, oncologist, then chemo hopefully starts next week.

Waiting

It's Saturday morning, and I'm waiting for my designer to show up online. We need to get a couple of projects squared away before my surgery on Monday.

Yeah, surgery. Waiting on that too. Waiting and thinking about how I never called Maureen back, which wasn't cool, but I'm sure she understands.

I'm grateful for Andrew, who in the end blew off one of his clients to come see me before he went out of town. I'm grateful for Bette who sent me a pretty wall hanging with the word "Faith" painted on it. I'm grateful for my clients, who are being so cool about things, and for my friends who are checking up on me and helping me to be brave.

It's Saturday morning, and Dave took Sam outside so I could do a little work. Dave rocks.

On Monday, my sister Katherine is coming to stay with me for a couple days. I wonder how I'll do with the whole mediport thing. I try not to think about it too much.

People ask me how I am, and I say, "Physically I'm fine. Emotionally, it's pretty rough." I keep hoping that the emotional stuff will get easier just as the physical stuff gets harder, but deep down I know they are intertwined and there's a lot of emotional stuff left to deal with - losing my hair, losing a breast, having reconstruction. Still, I believe that doing something will feel better than doing nothing, as awful as doing something might otherwise be.

My designer is late. Still waiting...

Mediport

Time to get the mediport!

A mediport is a valve that's inserted under the skin and connects to a major vein in the chest. They can use it to draw blood or to inject medicine, e.g. chemo. It can stay in forever if you need it and prevents my one meager vein from getting traumatized again and again and again for the next year or so.

I've heard the implant procedure hurts like a bitch.

I guess this is my very first surgery. It's kind of amazing that I've gotten to 33 years old without ever having surgery. I'm a little freaked, but I'm considering it a trial run for all the other surgeries I'm going to need. :)

Yesterday was tough. These changes in direction hit me hard and require mental adjustment. Luckily the "thrown for a loop" intervals get shorter and shorter the more it happens. I'm in good spirits today.

Square One*

Well, we're kind of back at square one. Remember pre-operational chemo? Yeah, that's square one.

It's not the old doctors' fault. Not entirely. It's just that they didn't have enough information to really make this call. When the information came in, it appeared that they were right all along, but not for the reasons they gave me, which doesn't mean you're un-fired, old doctors. It just means you were lucky.

The breast MRI gave us some new information. So now we're back to chemo, then mastectomy, then (possibly) radiation, more chemo and hormone therapy. And reconstruction fits in somehow. Plan A, as it were. And that's okay, because everything's full speed ahead until it isn't, and because it's better to do it right than to do it right now, and because now I understand why. Can we start now?

One more doctor to see, hopefully this week, then the port (oh yeah, that again?) then hopefully we're through with the false starts and chasing around and we can finally start fighting this thing.

* Composed to the sweet sound of my pre-schooler singing "na-na-na-na BAT MAN!"