Day 124

It seems that summer has come and gone without it really having happened in the first place, at least at our house. I remember when summer was a different creature for me, back in the days when I was in school, even in college. I always worked in the summer, from the time I was very young, but at least the pace was different. I can’t remember when summer meant sleeping in—maybe when I was 11 or so? It’s been a long time. My kids will never really know the joy of the carefree summer, since they will always need to be in school or daycare or camp or something, due to our work schedules. But at least the summer rituals usually apply—swimming, grilling, staying up late to catch fireflies or go to the park, eating popsicles on the steps, hanging the laundry on the line.

Did I do any of these things this summer? Did my kids? I didn’t, not for the most part, as I always seemed to be recovering from surgery or having side effects of chemo or something that kept me apart from the world. We did go on vacation in the early summer, so that was good. Otherwise, I had my first grilled food of the season this past Sunday and I put on a bathing suit the other day to sit in our back yard, just to remember how it felt. Gabe did many of the above things with the kids, or with Lenny at least, but not nearly as much as in a normal year. The loss of this summer makes me wish that it was possible for one of us to be home more. It’s not, of course, unless someone wins the lottery at our house, and it’s hard to win when you don’t play the game.

The summer is only the tip of the icerberg. I’m starting to really worry that the kids resent me, or have just lost too much due to my cancer diagnosis, but they’re too young to really tell us what’s going on. I have become very concerned about Augie. He seems to have lost the few words he ever spoke, and his aggression is getting worse. He is very cuddly and loves people and he’s mostly happy. I’ve just been devastated with worry about him having autism or some other issue, but I know he also might just be reacting to how things are at home. I am going to have him evaluated, regardless.

Lenny is still acting out as well, though she’s gotten a little better. She doesn’t sleep right before or after I have chemo, and she still defies me and throws tantrums, which she never did before two months ago. And I wonder, am I that bad? Have I screwed things up so royally at home? You’d think you’d get a free pass from parental guilt with cancer but it is horrible thinking about what it’s doing to the kids. It’s worse to realize that we might never know how they would be different if they hadn’t had to deal with this.

I thought I’d been better this past week. Taxol has not been fun, and I felt very weak on Saturday in particular. I got the bone pain for sure (more on that later) and it felt like having a really bad flu, with aches in literally every bone in my body (I’m talking toes and fingers too). The day after chemo, I was depressed to find that all of my fingernails were killing me. It felt like I had the bristles of a hairbrush under each and every one. I thought that didn’t bode well for me keeping my nails. I cut them very short, and so far they are still there. They haven’t even started splitting, though they started hurting again today. I’ve heard that putting black nail polish on your nails can help protect them, but that seems either like an old wives tale or an excuse to rock black nail polish at work. Regardless, I now have 5 different black nail polishes, so I can start a new fashion trend: bald goth, anyone?

Anyway, food hasn’t been staying with me so well, but I’ve enjoyed eating it. Most of the time, I don’t feel sick. I’m tired every day, but I think that’s just the cumulative effect of chemo. Maybe my body was convinced it was done, and then I went back and did more of this. But on the whole I have been able to be a more normal mom, a more functional person. The weather has finally changed and it’s been beautiful, cool even. I made muffins with Lenny over the weekend. We went to a lake in the south suburbs and walked around with the kids. I ate at the dinner table. I did a little laundry. This might not seem exciting, but these were things I hadn’t done in a while. We even went to a minor league baseball game last week. But my relative normalcy doesn't seem to have fooled my kids, not at all.

That minor league game was the first time that I wore my hair outside of the house. I wore it to the lake too. It was cold-ish on both days and I didn’t want to be bald, and I also didn’t want to deal with the impact of being around a bunch of kids who didn’t know me and getting the questions. Wearing my own hair, with a scarf or a hat, was a truly strange experience both times. I looked so normal—just like myself. People treated me that way, guys looked at me, women commented on the red-headed family. I could reach up and play with my hair just like I used to do. Did anyone notice when I started crying? It happened several times. It just made me so sad. I used to be this person, and now I’m not. It’s not just about hair, it’s about the illusion of normalcy. I know that is so important to many women undergoing cancer treatment, but it’s the pretend-normal that is really rough for me. I’d rather just have it out there. I’d rather be the bald, obvious cancer lady, than be reminded of how I used to be and how people used to interact with my family.

It’s been a rough week emotionally. I have had no desire to write here at all. Maybe it’s chemo bringing me down, or hormones, or the rough times with the kids. When we were heading off to the lake, Lenny said “I wish I was at school and I didn’t have to spend time with the family.” Now, I did what any parent of a 4 year old would do in that situation. I told her that wasn’t nice and that I know she didn’t mean it, and that we would have fun. And then I left the room and cried. Maybe my daughter hates me, or maybe she loves me too much. Either way, I was thinking, what if this is the last time we get to do this? Why can’t we enjoy it? I can’t say that to her, of course, and it’s too much pressure to expect her to understand what’s going on in my head, but my god it’s hard.

Because this bone pain is scaring the shit out of me. Not because of taxol—that bone pain I can deal with, and it’s expected. What worries me is something different. Off and on for the last several months my spine has been hurting. I asked the surgeon about it back in June and she said it was highly unlikely that is was anything. She didn’t think I needed a bone scan, though I could have one if I wanted it. It seemed to get better so I stopped worrying; they say the pain from bone cancer never alleviates. I asked about it again when I felt it while I was on a/c, and the chemo nurse said that would be due to neulasta. Now Taxol is supposed to be to blame.

All I can think is, what if not? Breast cancer is most likely to metastasize to the bone, and the spine and hips are the most likely places. It’s unlikely to have “mets” when you’re stage one, perhaps unlikely for anything to grow during chemo. However, if that is what it was, that would be it for me. I would be stage 4, doing cancer treatment for the rest of my short life. They have “made great strides” treating bone cancer that has metastasized from the breast. They now give you up to 2 to 3 years to live.

Two to three years. That’s what I’ve been thinking about this week. Not getting to see Augie go to kindergarten. Not reaching 40. Writing letters to my kids so that they would remember me. Hoping Gabe marries someone else so everyone wouldn’t be stuck thinking about me all the time.

It sounds morbid because it is, I guess. And if I was just being a hypochondriac or having some kind of bizarre depressive episode, that would be different. It’s hard to be a hypochondriac when you’re my age and have cancer. Only 5% of women with breast cancer are under 40. I am one of them. Why couldn’t I be one of the 5-10% of women with no lymph node involvement who see their cancer spread elsewhere? I know I should just get the bone scan. I haven’t done it because the very thought terrifies me. It’s one thing to do what I’ve had to do with breast cancer. I just can’t imagine facing those test results and getting the answer I got from the breast biopsy. With this, there would be no going back to normal ever, and not much time to be abnormal.

The only thing keeping me going through chemo right now is the notion that things will start to feel more normal in a few months, that I have the possibility of a normal life when this is done. Is it selfish to say I don’t want to give that up too? I understand now where denial comes from, and I can see it now as a source of strength if you can really get into it. If I can stretch my denial from just not doing the scan to actually convincing myself that my bones are fine, that would be such a relief!

I thought about not writing this blog at all, because I know no one wants to read this—including me. I know I’m not supposed to have these thoughts, that I should be positive, and that it does put a real burden on people who care about me to hear me say these things. But maybe I just need to keep it real for myself, at least. That is probably selfish too, I realize. There's just so much pressure to feel things it's hard for me to feel; I need a place to acknowledge everything else, I guess.

I was talking to my ob/gyne last week about my menopause issue (my body still hasn’t made up its mind). This is the guy I have always felt has been supportive and understanding, even if he’s a little eccentric. When he told me the effects of menopause would be temporary for me, I said, well, hopefully (there’s at least a 20% chance it won’t be). He scoffed and said, great attitude! And proceeded to tell me to not let menopause happen. Just make sure it doesn’t, he said.

Huh? Have they been holding out on me? Can I push a “no menopause” button? If so, can I trade it for a “no cancer” button? Is that the “cure” everyone’s been talking about? I am totally behind that one. I would buy all the pink crap and wear all the ribbons and go on a thousand walks and even talk about strength and hope and love and whatever if I could have a do-over. I can’t though, that’s the thing. So the next step for me is to scan or not to scan. And to this day I’ve never had to answer such a tough question.