Goodnight Tamoxifen

I feel like my life is one big ping pong match in which I go back and forth between cancer and hips and cancer and hips and cancer and hips. It is one big story of damage control.

I've been sick all week with some nasty crud that keeps me awake all night coughing and has stolen my voice. As far as nasty crud goes, I've had worse, but the sleep deprivation is always what gets me. Plus, for someone who makes a living giving lectures, it's pretty inconvenient to not be able to talk. I had to cancel class on Tuesday because I literally had no voice.

Ever since my appointment last Thursday, I've gone through various stages of Kübler-Ross grieving, and shockingly, I'm in a pretty good place right now. I'll have to write about it later. Nevertheless, I'm sort of totally freaking out about next fall, and my job. There are some complexities of my job that I won't go into here, but I feel like I definitely need to work full-time next fall. It's not just because I took last fall off and the fall before that half-time - though that's huge - but there's other stuff as well. Lots of moving parts. And because of the nature of my job - teaching at a university - I can't really just take time off until I'm ready to come back. We don't have substitutes like in K-12, and trying to come back mid-semester is pretty tough. Obviously unexpected things happen, in which case you deal with them, but if you KNOW there's something that's very likely to happen, like having your hips sawed apart and screwed back together, that will very likely interfere with your job at a predictable time and in a predictable way, it's the responsible thing to do to make arrangements ahead of time.

I know my Chair is probably burnt out from dealing with my crises and from generally being overworked and underpaid, so I've been hesitant to say anything - plus, his wife is expecting a baby any day now, and holy crap, I forgot to ask how she was doing and I pray she did not actually have the baby yet because that would make me the hugest, self-centered jerk ever! However, stress got the best of me today, and because I'm super Type A, I just had to tell him what was up, because one of my 'solutions' for the fall is to make a change to one of my classes that needs to happen within the next few weeks, before students start registering. Today seemed like just as good a day as any to burden him with yet another of my problems. Now that I think about it, it's probably better now than after his baby is born (which hopefully it was not). I think I hit a new low, going into his office and squeaking about my hip problems in my barely-above-a-whisper voice. Like, gee, am I not the most pathetic employee EVER? I know, I know, I didn't ask for any of this to happen, but even my own mind is boggled over the ridiculous sequence of health catastrophes I've had over the past few years, and I have to admit that if I were an outsider looking in, it would come across as attention-seeking behavior. I mean Jesus Christ. Fortunately, my Chair is an outstanding human being, and I feel better now, because he held my hand (not literally) and told me it's going to be okay. Also, there has been a lot of crap coming down on me this year, and whereas I'd normally get snarky and combative about a lot of it, I've been extra chill, just because my department was sooooo supportive of me with the cancer ordeal, I feel like I need to grin and bear it and play nice. Now I'm suuuuuper glad I haven't been a jerk, even when I've wanted to be (and if you know me, you know it takes a lot of self-restraint for me to not be a jerk).

And oh my gosh, as you may have guessed by the title of this, that's not even what I came here to write about. On the other side of the ping-pong net, there's CANCER. A while ago, I wrote about how I was in what I suspected to be a tamoxifen-induced stupor. I re-read those words I wrote, and I can't believe those words came out of me. That wasn't me. I went to see my primary care doctor about this, and he really helped me out of the hole. I wish I had written about it then, because I don't really remember the details, although I do remember him telling me that if he thought I was going to harm myself, he was obligated to have me locked up for three days. I told him that even though I was hoping to die, I had no plans for how it would happen, and apparently that was okay. As long as there's no plan.

I took an anti-depressant for a little bit, but it made me feel horrible, so I stopped. I stopped everything - the anti-depressant, the tamoxifen, the baby aspirin. It was my own decision. My PCP did not really approve, and told me I needed to talk to Dr. M about it ASAP, although I do think he could see firsthand at my follow-up appointments that I was sooo much better, so he didn't push it too much. I think it was mostly due diligence. I also, somewhere in all of this, had an appointment with Dr. T, who, as usual, expressed concern over my weight. I briefly explained to him that I really felt like the tamoxifen had done a number on my appetite, but that I wasn't currently taking it, and I had actually gained weight since I stopped (which basically makes me the opposite of pretty much every other woman I know who has taken tamoxifen, but whatever). He obviously didn't approve, either, and urged me to see my oncologist about alternatives. Unfortunately, I know what the alternatives are, and they don't sound fun, either. And I just wanted to enjoy being myself for a while.

But stress of my recklessness eventually got the best of me, and so I made an appointment to see Dr. M. That appointment was today. I haven't taken the tamoxifen in about three months, so I think I have a pretty clear picture of the effects it was having on me. First and foremost, the severe depression was definitely the tamoxifen. I think it snuck up on me, though. I'm not a super happy person naturally. I don't handle stress well at all, and while I think I have a deep appreciation for life that might surprise people who don't read my blog, my default mood is more melancholy than happy. A low-level disgust with life in general is normal for me, lol, BUT, I've never experienced anything like I did in December, and it was quite honestly downright scary. Second, I've mentioned a couple of times that I felt like all those surgeries I had made me stupid, and I really wasn't kidding. Since cancer, I have not felt as mentally sharp as I used to be. Many people who have chemo talk about 'chemo brain,' which is a real thing. I didn't do chemo, so for a while I just thought I was having empathetic or guilt-induced chemo brain, or the exhaustion from all the surgeries and trauma of cancer in general zapped some brain cells, or at least some dendrites. The thing is it never got better, even a year later. I still felt foggy. When you're standing in a large lecture hall, lecturing to 85 people, and not only can you not think of words that you could once spout off in your sleep, but you also can't even remember what you were talking about to think of an alternative explanation, it becomes pretty clear you aren't just making it up. It turns out a lot of that was the tamoxifen. Not all of it, because these lapses still happen occasionally, BUT, I am so. much. better. And finally, there are the little things - nausea, loss of appetite, cramps, fatigue, hot flashes.

I reflected on all these effects before my appointment and decided that I could put up with the little things, and probably even the tamoxifen brain, but that I was so terrified of the depression that I was pretty sure I didn't ever want to take the tamoxifen again. Then again, there was a little voice inside of me that said maybe it was doable if I vowed to be extra vigilant about looking for signs that I was heading downhill. However, I was pretty worried about this, especially considering that with four impending surgeries and over a year of intense rehab ahead of me, I really need to be in as positive a state of mind as I can be.

These were the things on my mind as I headed off to my 4:30 appointment with Dr. M. I started off telling him in some detail of my slow decline October through December, ending with me crying in my PCP's office and on the brink of being locked up for three days. I told him I had stopped taking the tamoxifen, that I hadn't taken it in three months, and that I felt great. I basically told him most of what I wrote above. He listened very carefully, then said definitively that he was completely okay with me not taking the tamoxifen. I mean, obviously it's my choice and no one can make me take it, but he didn't say it in a you are being stupid or well it's up to you - I don't care if you die! type of way. He said it very thoughtfully.

Then he said he wanted to make a few things clear. I should not see tamoxifen as a 'life-saving' drug. The original cancer is gone. The mastectomy was what was 'life-saving.' Tamoxifen is simply a drug to help reduce the chances of a recurrence. Since I've already had cancer, and I still have breast tissue, I'm at a high risk for getting more cancer. But, a recurrence doesn't necessarily mean I will die - 'It just means that in a few years you might be sitting in my office again, going through the same thing you went through before, facing the same choices.' Weirdly enough, that statement was both alarming and comforting at the same time. Of course I don't want to deal with this again. At the same time, how bad was it? I mean, I'm here, after all. And there was a time in December when I really didn't think I would make it, nor did I want to. Dr. M did mention that there was a chance that the cancer would come back as metastatic cancer, but that could happen even I continue to take the tamoxifen. The cancer may come back, in any form, regardless. He concluded, 'When I hear that the tamoxifen has turned a perfectly good microbiology professor [sic] into a vegetable, I vote to stop it.'

He said the chances of a recurrence are approximately 20%, and the tamoxifen reduces that to around 10%. Which... wow, sounds like a lot. 20% sounds so high. Then again, so does an 80% chance of it NOT coming back. Of course, I'm a glass half empty type, so this is a tough one. Then he pulled up a web site called Adjuvant Online, which is a tool that supposedly more accurately predicts your chance of survival five and ten years out based on your age and cancer stats. We plugged in my stats, and he got a kick out of the fact that I had them memorized. He was looking around trying to find my Ki-67 value, and I informed him it was 11. LOL. According to Adjuvant Online, I have something like an 85% chance of being alive in five years and a 77% chance of being alive in ten years. (It's sort of a morbid tool, now that I think about it.) I would normally remember the exact numbers, but I was sort of fixated on how low they seemed! I mean, yikes, 77%, that's barely a C+ in my book! Then he said the problem with the tool is that the death rate didn't just include people who died from cancer; it included people who died from anything, including plane crashes, whatever. That made me feel a little better, but still. I asked him if 'survival' meant a cancer-free survival, or that you were just alive five and ten years later. He said that it just meant you were alive. So, you could have a recurrence, but so long as it didn't kill you, you'd still be in the 85%, or 77% (which would be possible with a recurrence of the same type of cancer in, say, my right breast, but unlikely if I had metastatic cancer). Somehow his conclusion from this was that I wasn't receiving a huge benefit from the tamoxifen, as my chances of being alive five and ten years from now didn't change a whole lot with hormone therapy, and based on what I had told him I should stop. This was a huge relief considering I had basically already decided I wasn't going to take it anymore anyway, but somehow I couldn't get that C+ out of my head. Yes, that's ALL DEATHS, but how many people actually die in, like, hiking accidents or random other tragic events?!

I was kind of surprised he didn't suggest an alternative, like shutting down my ovaries and trying a post-menopausal drug. I was pretty sure he would, and had all my excuses lined up. Like, I'm pretty sure I can't handle going through that and multiple hip surgeries at the same time. But he didn't even bring it up. I was relieved, but also a little disconcerted considering two oncologists suggested this instead of tamoxifen, simply because of my age. Ironically, I think I went with Dr. M because I liked his less aggressive style, and now I'm worried he isn't being aggressive enough. What can I say, I guess I am hard to please. In the end, we agreed I would continue to see him for breast checks every year, but otherwise we'll each go our merry ways. Then I asked him for something for this damn cough - something with a narcotic in it to help me sleep.

All in all, I felt like it was a good appointment, and overall a good day. I am willing to take my chances. I'm a little nervous, but let's be honest, I am going to be nervous no matter what. Lately, though, I've been feeling pretty optimistic about life in general, and I think that's probably because I haven't been on tamoxifen. Oh the irony. As I told my Chair, the fact that I'm considering the hip surgeries must mean I'm feeling optimistic that I'll live long enough to reap the benefits. Take the silver linings where you can.

So, goodnight tamoxifen, and goodnight to all. I'm going to go enjoy a big swig of my cough medicine and hope for some ZZZZZZs.