Saturday, September 18, 2010

Day 135

This blog won't hold much new information--I just need to get some of this out of my head and into the ether before I lose my mind. I hate being in limbo, not having a plan, and having my small probably insignificant little goals squashed like so many bugs. There's nothing that makes me crazier.

Just when I thought the end was in sight, I can now honestly say that I have no idea how long chemo will last. I went in yesterday with the attitude that yes, I would be able to do chemo today! And boy was that crushed, with some ferocity in fact. My numbers were even worse than on Wednesday--all of them. I guess I could have understood if they hadn't improved enough, or at all, but to get worse? Talk about depressing. The number they really care about, the neutrofills (no clue how to spell it) went down to 200 from 300. The lowest that is considered normal is 1,500, though they would have treated me at 500. This is so low that even the staff was surprised. I wanted to act like this was expected, but I was so devastated again. I tried not to cry but I just broke down and couldn't stop.

The nurse, who wasn't my nurse and also wasn't the one who was supposed to be seeing me, said, I know I shouldn't tell you it's not the end of the world because it feels that way to you, but this is very common. She told us that people are held back from their treatments for long periods of time for this problem, that it's not due to anything I could do, it wouldn't affect the way chemo worked on my body, etc. I just couldn't really hear any of that. I asked, do you know how little my kids are? My son doesn't even remember what it's like to have a normal mom. I really wanted to be able to be done by Christmas. She told me he wouldn't remember it. She was trying to make me feel better, but every time I hear that I think, it's true. He might not remember me.

We've had so many special occasions marred by cancer this year, and for the most part we've just accepted that this is a lost year and that next time hopefully things will be back to normal. Augie's first birthday, mothers day, fathers day, Gabe's birthday, my birthday; now it's going to be Halloween, Thanksgiving, Christmas. It's not that we didn't enjoy these events as much as we could. But each little milestone that I could think of in my mind that would be post-chemo or post-treatment were the things that kept me going, and now they will all be cancer-treatment moments.

Gabe said he felt cocky on Tuesday, thinking that we had less than a month of chemo left. I was thinking we could at least go out for our 6 year anniversary on October 16, even if I felt like shit, knowing I was done with chemo. Now, I don't have any idea when they will treat me next, much less how I will react after each dose, or when this will all be done. On Monday, I go back, get more blood tests, and if the numbers are ok I get chemo. But the nurse yesterday thought that was pretty unlikely to happen, so I need to psych myself up for the disappointment. It's just too hard to feel hopeful and have things crushed when it's happened so many times. Apparently, once your WBC count is down, it takes a lot to get it back up again. The key is for it to not go down in the first place.

And this is what is killing me. My numbers were great on A/C, the supposedly harder part of the treatment. Harder in some ways: insomnia, nausea, anorexia, fatigue. But I got through the damn thing, due to the neulasta. If my doctor had given me the neulasta after taxol, this would probably have never happened. So most people don't need it. Clearly, I have not responded to treatment like most people. Even if I had, what's the harm in being conservative? How many breast cancer patients have two kids under the age of 5? Give me the damn shot. Some bone pain is better than putting off my treatment indefinitely, or putting me in a situation where I can't do anything without risking my life.

Right now I'm not supposed to go into work, take the kids into daycare, ride the train, go to the movies, be in crowds, or do much of anything. So you take someone who is really depressed by the chemo being put off, isolated due to cancer anyway, and say, have a great weekend! By yourself. In your house. It's not the end of the world! What was the normal world like anyway?

The nurse seemed to think that I should have received the shot as well, though she didn't say so outright. She said my doctor was "unconventional," that he liked to do his own thing. She then tried to spin that as a positive, saying, you should normally get done with treatment earlier. Well, clearly that's not the case. Am I getting good treatment at this world class cancer center? I'm starting to doubt it. I asked the nurse yesterday if getting a second neupogen shot would increase the bone pain that I had. She was surprised anyone had told me that it wouldn't cause pain, as that's very common. I told her that if I had to get multiple doses of that shot, plus Taxol eventually, and then neulasta--all of which caused bone pain for me--I was worried I wouldn't be able to walk. She looked at me and said, yeah, you will be pretty achy.

Pretty achy. Yesterday I was only dealing with the two shot doses since Wednesday and I felt like my bones were put in a vice and were being slowly crushed. My hips, lower back, tailbone, and the tops of my legs hurt so much I couldn't sit down or lie down. I had to walk continuously in order to be able to stand it. It was like back labor, but everywhere. The physician's assistant prescribed a pain med for me that she thought would work, since I can't take most of them. She was being safe with the small dose--I sure didn't have any side effects. It also didn't do a damn thing.

The pain is better today but still there. There's a part of me that's so intent on doing chemo Monday, though I know I can't expect that to happen. Then there's a part of me that is terrified of doing it, since I want to be able to walk and take care of my kids and I worry that getting taxol so soon could make me incapacitated.

This just honestly seems so stupid. I was so healthy just a few months ago. I still feel pretty healthy, except for that crushing pain I had yesterday. How is it possible to be so close to the tiniest thing killing you when you feel fine? And why is this worth it? It just seems outside of the realm of normal to have this be the response to the type of cancer that I had.

This is the thing I haven't told the doctors or nurses. There's another reason I need chemo to start up again. It's not just so I can go back to looking forward to all the things I was looking forward to before (like having a few weeks of my favorite month, October, with no cancer treatment, going apple picking this weekend, starting radiation November 1, celebrating Christmas and the end of treatment at the same time) that now can't happen. It's not just because now I am in total limbo with work, because doing chemo on Mondays will make it nearly impossible for me to work any kind of normal schedule, and being so neutrofill deficient means I can't go into the office. It's also that the longer I go between treatments, the more they put me off, the less likely I am to ever go back.

I'm thinking about just giving up. It might seem irrational, and I know I can't make that decision in the emotional state I'm in right now. But it doesn't seem like such a terrible idea. I'm young. I need to be able to function. I can't be a full time cancer patient. I have a job and little kids. I had a very low stage cancer that never incapacitated me or caused me pain or suffering. This treatment could have permanent effects that would severely compromise my quality of life.

I suppose I could also end up just fine and normal, and I've been looking forward to that, but it seems so far away. I've started having night sweats and boy does that piss me off--menopause NOW? If I had just chosen the other chemo I would already be done and maybe that would have never happened. I know I should remember that the other chemo would have made permanent menopause actually much more likely than this one, but still. I've gained most of my weight back and I fear that I'm just going to keep gaining due to these hormones. I'm sick of being bald. The novelty has worn off and it just seems ugly to me now, though still preferable to wigs.

I needed those goals to cling to in order to make myself do this. The little holidays, the schedule for radiation, the treatment being done in this calendar year. Would it be so bad to quit chemo and just start radiation? I've done 5 after all--that's better than nothing. I suppose I will do another one, but if the bone crushing issue is too much, or if my WBC count goes down again, I think I might be done with 6 and not go the full 8. I recognize there are folks reading this who think I'm a total idiot for even considering that. I might even consider myself to be an idiot if I stop, but the thought is definitely there.

The medical folks seem so surprised at how my body is reacting. I knew this would happen though--I've known since I was 8 years old that my body and drugs don't mix. It's why I shrug it off when people make fun of me for what a straight edge I've been most of my life. I've said it before, even in this blog. I could never do drugs. They would kill me before I could ever enjoy them. That's just how it is, for better or worse. Maybe it's worse now because I'm small, and their doses aren't conducive to a 115 pound person. That seems unlikely though--it's probably just me. I might be better off fighting this with whatever health I have left and some luck.

I can't imagine that soon I will be stuck here all the time, out of work on disability, bored, when just months ago I was multitasking my life away with a happy little baby pulling my long hair and asking to nurse on my breast that held these three small tumors that would change our lives so drastically. It's the distractions of work and family that have kept me focused on getting through this. Now I might need something else. I can't do crowds, and I can't be around sick people, but that should end soon hopefully. I will need some adult conversation, and if anyone wants to go out for a drink, I could always have a ginger ale. That won't be so different from the past after all, when I could order one beer and drink it for three hours. The idea of being social is something to look forward to anyway, as October 13 was. Now that's just another day that can't come soon enough, and 2010 is just going to seem like the year that happened in slow-mo, with its viscous, trudging weeks.


  1. Ungh. I'm so sorry, man. I am sending you lots of good karma and will try to call this week. I will have lots of stupid job drama going on that I can distract you with. Hang in there and know that I am thinking about you - let's talk soon!

  2. Hey everyone, cross your fingers. Katy went into the hospital by herself today thinking that they wouldn't let her do chemo but her numbers are back up! She's going ahead. I'm at work but heading over there after a meeting at 11 (this slow 4 hour chemo lasts forever!) It's weirdly ironic to think that something that's going to make her feel so much physically worse will actually probably help her to feel better emotionally - but hopefully getting back on some kind of schedule will bring that end back in sight. We've both been in a dark place this past few days, despairing that this horrible stage of cancer treatment would never finish. Now we just have to see how bad this treatment will be - bone pain from Taxol, Neupogen and Neulasta all before the weekend...

  3. Wow, I so totally get what you're saying, Katy. It's a scary thought, giving up, but better to have said it out loud than just have it in your brain. I am keeping my fingers crossed, per Gabe's suggestion. May that dark place leave you both. It's not fair that you have to feel totally crushed just to keep on the path. It's humbling in a mostly destructive kinda way. You're going to make it, OK? Believe it.