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.

Death by Tamoxifen

I have really been struggling lately. A lot. At first I just thought it was my usual tendency to struggle, to hate life, rearing its ugly head. After all, it is the end of the semester, the time when my students push me to the brink of insanity, and it is Christmas, a time I have come to mostly dread. So there is a lot of stress, and as I've mentioned about 1,000 times before, I have the most pathetic level of tolerance for stress ever. I used to drive across town to ask a question in person rather than making a phone call, because phone calls are stressful. True story. (I've gotten better since then, thank goodness.)

But I feel like I am deteriorating, and rapidly so. I basically spent all of yesterday crying and hoping I would die. I kid you not. It felt like a true medical emergency. I have never felt that way before. I called my primary care doctor, but he had no appointments available. I called my medical oncologist, but he had no appointments available, either. I cried and told them it was urgent, but this did not make an appointment become available. I briefly considered going to the ER, but I didn't want to end up in a straight jacket in the psych ward, so I guess I haven't totally lost it yet. Thankfully I calmed down. Today, I feel flat, almost like a manic-depressive post-mania, except I've actually come up and not down.

And now I'm wondering - is this me, or is it the tamoxifen? After I took my daughter to school this morning, I crawled back into bed and couldn't make myself get out. After all, I didn't have to. 'Having to' is my only motivation to do anything these days. Eventually, I forced myself to get up because my husband was giving me weird looks. Instead of doing what I need to be doing (Christmas stuff), I went to see Dr. Google, who told me that this could very well be the tamoxifen. I figured the tamoxifen wasn't doing me any favors, but since I've been on it for over a year and haven't managed to kill myself, I didn't think that's what it was. And maybe it's not, but oddly enough, the idea that it might be is sort of comforting. I mean, yay, this medicine that is supposedly saving my life is giving me suicidal thoughts! What an awesome scenario! Apparently among those people who suffer from severe depression as a result of tamoxifen, the depression starts an average of eight months after they start taking tamoxifen. Oh, and Dr. Google also told me that most anti-depressants hugely reduce the effectiveness of tamoxifen because they are CYP2D6 inhibitors, and the enzyme CYP2D6 is what converts tamoxifen into its superhero status.

So here we are.

I'm going to discuss this with my doctor this afternoon. My husband begged and got me an appointment.

I wrote this elsewhere, but I am reposting it here now that I believe I may have written it in a tamoxifen-induced drunkenness.

This is how it feels.

In the morning, you wake up tired. You are always, always tired. It is dark outside, and it is dark inside. The darkness seeps into every tissue. You hit snooze. You close your eyes and try to go back to sleep, but when you close your eyes, all you see is blackness. The blackness swirls, like a tornado, and wraps around you, grinding at your heart and soul.

You try all your tricks. You take a deep breath in and tell yourself 'Blue skies in,' and try to imagine a blue sky with fluffy white clouds, entering your body, penetrating the darkness. But the blue sky isn't there anymore, only darkness. You breathe out and try to find the right words for what you are hoping to rid from your body, but you can't think of the right words, because your brain is fuzzy and at about 70% of what it used to be. But you can picture it. Some sort of insects fly out - locusts or flies - like in The Green Mile. But they don't go far; they swirl around in the darkness that envelops you and find their way back in.

You hit snooze again. You pull the covers over your head, and you wonder what would happen if you just didn't get out of bed. Then you realize you don't really need to wonder, because of course you are going to get out of bed, because you are an adult and two small people depend on you to get out of bed. It is warm in your bed. You try to soak up some of the warmness, hoping it will melt the black away.

You hit snooze again. As you start waking up, you realize that not only are you tired, but you are also nauseous. You don't know if it is a hangover, because you have been drinking every night, because that used to help take the edge off of your anxiety. It doesn't help anymore, but you do it in anyway, maybe because you're on a self-destructive path, or maybe, just maybe, you are daring the cancer to come back and kill you. Or maybe it is the tamoxifen, and menopause. Or maybe it is your job frustrations, your relationship frustrations, your terror about the future of the country, that have put your GI tract into a permanent, dysfunctional knot.

Your radio goes off again. The classical music doesn't soothe you anymore; it irritates. You realize that you absolutely have to get out of bed. Your kids have to go to school. You have to go to work. You count to ten to try to psych yourself up. Your blood pressure rises. Your heart is beating so hard and so fast that your carotid arteries expand with such vigor, it feels like a twitch.

You finally get out of bed, but mostly because you have to pee. The bathroom is cold. Your closet is cold. This is a part of your new condition; you are always, always cold. You aren't sure if it is actually cold, if it is the medicine, or if the darkness swirling inside you manifests itself as a constant chill, a metaphor sprung to life.

You wake your kids up. You have given up on your daughter. It is too late for her. The painfulness of this realization eats at you, because you know her shortcomings are direct reflections of your parenting failures. You focus on your son. There is still hope for him. He has an inflexible morning routine that starts with him cuddling in your bed with you. It is one of the only reasons you can make it through the day. At the end of the cuddling, you make it through another 24 hours so you can experience the joy of cuddling the next morning. You feel ridiculous that your life has been reduced to this.

You take the kids to school, you go to work. You are such an expert at hiding how you really feel that no one can see the darkness that blankets you. You push the darkness inside you, deep, deep, deep, where no one would suspect it. But that has a price. It struggles to escape, eating your insides in the process.

You pick your kids up from school, you go home. You take everything out on your daughter, because she is an easy target. Your relationship continues to deteriorate; you know you are stuck in a bad cycle, but you can't help yourself. You say things to her you cannot believe you are saying. It doesn't even feel like you when you are talking. You lavish praise on your son. You know you should try to do the same with your daughter, but there is not much to praise. It feels like a cosmic slap in the face to be a mother to someone with whom you are so incompatible.

If you're lucky, you manage to grab a nap, because you are tired. You are always tired. Then you try to cook dinner, but it's hard, because you don't enjoy most foods anymore. Eating is mostly a chore. But you try, because otherwise your doctor will lecture you, and your clothes will become unwearable, and you don't want to have to buy new clothes.

Your husband comes home. You don't talk a lot these days because there is so much to disagree about, it's better to just hold it inside. You drink. You don't drink wine anymore because white wine tastes like gas and red wine tastes like blood. Instead, you drink a martini because the taste is somewhat foul, but at least you know it tastes the way it is supposed to.

You get the kids to bed, then if you haven't had enough martinis, you choose another sleep aid: cannabis, melatonin, Ambien. You may or may not take your tamoxifen. You are confused. Part of you thinks the tamoxifen is doing this to you, making you so miserable you don't even care if the cancer comes back. But then you wonder if you stop taking it and start wanting to live again, will you be sad if the cancer comes back?

If you're lucky, the sleep aid will work, and you might get a few hours of sleep. Sleep wraps around you, temporarily removing the burden of darkness. It is your only escape. You wish you never had to wake up. But you congratulate yourself on making it through another day, and look forward to cuddling with your son in eight hours.

One year ago today...

Last night, I went to a PTA meeting for my daughter's school. I've never been to a PTA meeting before, and quite honestly, I went mainly because there was free pizza. (I don't think you ever outgrow the allure of a free meal.) When I walked in the door, one of my good friends, who was PTA president last year, gave me sort of a dirty look and said, 'I can't believe you're going to start coming to PTA meetings the year after I stop being president!' Since I did not want to admit that I, a grown woman with a job and a nice house, was just there for the pizza, I had to do some quick thinking.

I, um, was sort of busy last year. You know, I was working on my career change and stuff. And oh yeah... remember how I had cancer?! 

It's funny how cancer is not even the first thing that popped to into my mind as an excuse. Of course, I never went to a PTA meeting before I knew I had cancer, either. (What can I say? The pizza idea was brilliant.) But that's not the point. The point is that it is hard to believe that it was just last year that I was going through the most major ordeal of my life. In fact, exactly one year ago today, I was in the middle of the most major surgery I've ever had, and ever hope to have, in my lifetime.

In so many ways, cancer seems like such a distant memory, and in others, it is still with me, every day. It is a weird paradox to live with, not knowing if you had cancer or have cancer, whether you are a survivor or a patient. The physical scars from the surgeries remain somewhat problematic and serve as a constant reminder of cancer. I don't regret this, though. If I hadn't done reconstruction, I would have the constant reminder of cancer in a different way. Nonetheless, sometimes I feel a sense of inner loathing that I went through all of this mutilation for a sensationless lump of flesh with no function. And I am still receiving care for my scarring; in fact, I have an appointment with Dr. T tomorrow.

And then there is the tamoxifen, which I continue to blame for my hot flashes, cold flashes, general fatigue, and pretty much anything else I can blame on it. I've been extremely depressed lately, and because I cannot think of a reason I should be depressed, I blame the tamoxifen. But that's not my biggest gripe. In fact, I've spent so much of my life in various states of mental disarray, I'm used to it, and it could very well not be the tamoxifen and just the fact that I am me. My biggest gripe about the tamoxifen is that it gives me horrible leg cramps. HORRIBLE. I mentioned this to my oncologist the last time I saw him, and he pretty much blew me off, to the extent that I didn't even write about it. Later, however, I did some Googling to try to see why tamoxifen would cause cramps, and while I could find no explanation that could satisfy my nerdy mind, I did discover that this is apparently very common. In fact, many women who stop taking tamoxifen before they are supposed to cite leg cramps as the #1 reason they stop!

I've always had a bit of a problem with leg cramping, usually in the morning when I wake up and do my early morning stretch. But the tamoxifen-induced leg cramps are like the normal cramps on steroids. In the past, I used to get cramps on either the front of my leg OR the back of my leg, but these new ones involve the entire circumference of my leg, often both legs at the same time, often multiple times per night. Let me just tell you, it is extremely painful and also disruptive to my sleep. In fact, it's ridiculous. The other day I was sitting in my office and I got a cramp that crept all the way up my leg and along my hip, and it felt so weird that after a while I started to wonder if I was, like, having a stroke or something. And yesterday while teaching, I got a horrible cramp in my toes that then worked its way up my calf and shin and I seriously thought I might have to stop class. I could go on and on about this but I realize it is a super boring topic that probably reminds you of your Great Aunt Ethel going on and on about her hemorrhoids, so I'll stop. Just feel sorry for me, yada yada. 

And oh, remember my hip saga? Last night, I had a terrible nightmare that I had to wake myself up from. After realizing I had not actually killed anyone, and that my son was not actually dead, I tried to stay awake long enough to not lapse back into the same terrible dream. After a bit, I tried to go back to sleep, but realized that my hip was throbbing. And I mean throbbing. After about 15 minutes I realized my hip did not want me to go back to sleep, so I fumbled around and tried to find some Ibuprofen, which in itself was an ordeal, because I was sleepy and it was dark and I have 20/900 vision without my contacts and I keep the Ibuprofen right next to my tamoxifen (and it's actually in a tamoxifen bottle because I am an idiot) and even in my sleep-induced stupor, I realized the last thing I wanted to do was accidentally take a handful of tamoxifens. LOL. I would have taken something stronger than Ibuprofen because the pain was really that bad, but it was 3 AM, and I did not want to have an opioid hangover during class this morning. I think I got back to sleep around 4 AM, then woke up to - you guessed it - horrible leg cramps around 5 AM.

But OMG ISN'T LIFE AWESOME?! Ha. Really, life is awesome, it really is. It's just cancer and hip dysplasia that suck. :)

Happily Ever After

While I was in the throes of cancer, I started reading blogs about cancer. Of course. I still have a number of those blogs on my reading list, but only a few of them get updated with any sort of regularity. There seem to be two ways that blogs end. One is that the blogger ends treatment, moves on, and lives happily ever after (or something like that). The other is that the blogger dies, which sadly, is not an uncommon ending in the world of cancerland blogging.

Seeing as how it has been over a month since my last entry, I suppose one could say this blog is coming to an end, too. But since I don't feel comfortable throwing a 'happily ever after' party just yet, I figured I should write something.

So, I saw my medical oncologist, Dr. M on Friday. The fact that I almost didn't write anything about it speaks volumes to how far I've come since my first meeting with him. It's a good thing. My daughter didn't have school, so I had her in tow, and Dr. M spent about seven minutes with me, three of which we talked about our dislike of crowds, and how we don't have any desire to go to Disney World. The other four minutes, we talked about the effect that tamoxifen is having on me (hot flashes, cold flashes, nausea, fatigue, moodiness, and generally not feeling like myself), the fact that I haven't had a period since my surgery in September (can I really be in menopause?), and whether or not I should have a pelvic ultrasound for the mass in my uterus (the one that keeps showing up on my hip MRIs). Dr. M did a brief physical exam (not of my uterus, thankfully), told me I was due for a mammogram (OMG it has been one year already!), and asked me a lot of questions that made me realize that he pretty much has no idea who I am. And that's fine. I don't want to become close with my oncologist. That is certainly not something that lends itself to a 'happily ever after' blog termination. In the end, he suggested trying some sort of herbal supplement that might help with the side effects from tamoxifen (I forget what it is) and said he would read the results of my hip MRIs and call me that afternoon to discuss the pelvic ultrasound (he didn't). I hope that he and I remain cordial strangers.

On the other end of the spectrum, on April 12th, Dr. T drove down to my school (the 130-mile trek I'm always complaining about when I have to go see him) to give his talk on advances in plastic surgery that I arranged last October. He gave a fascinating talk, then we went out to dinner - Dr. T, my parents, me, and a colleague I invited along. My parents always take the speakers out to dinner after cafe talks, and sometimes they invite me if they can't find any other faculty to go with them. Of course, me going along this time was a no-brainer. The evening was quite pleasant, and a funny thing happened. Afterward, my parents and my colleague just went on and on and on about how FABULOUS and AMAZING Dr. T was - not just as a surgeon, but as a human being. I was a little surprised at first, because to me the evening had the same feel as, like, an evening out with my book club friends. You know, a nice evening with good food and wine and conversation. Dr. T seemed very relaxed, not as if he were putting on a big show. But then I realized that my dad had never met this man before, and my mom only met him once (and was apparently lusting after him the whole time), and my colleague only knew what few details I shared about him with her. And I remembered the first time I met Dr. T, how awe-struck I was, and how I knew he was the answer to my prayers. I then understood that was what my parents and colleague were experiencing, and it reminded me to never get so used to something that I take it for granted.

I had had a bit of a crazy day leading up to the talk/dinner and was exhausted by the end. When I get so tired/worked up, I often lose my appetite. However, after Dr. T's comments at my last appointment about how I had lost weight and do I even like food, I was determined to show him just how much I can eat, haha. Sad but true story: I felt super self-conscious trying to eat dinner with this guy who thinks I don't eat. Nevertheless, I enjoyed my trout and managed to fit everything on my plate into my GI tract. After dinner, we left the restaurant and said our goodbyes in the parking lot. Dr. T went to shake my hand, but at that point it seemed more appropriate to hug him, so I did, and he hugged me back. It's hard to believe that after all this, that was a first. I love this guy.

Meanwhile, life continues at the relentless pace of 100 MPH. I do think my fatigue is improving (considering it's 11:24 PM as I write this sentence), and that is good. On the other hand, I have been emotionally very fragile, crying long and hard over stupid, stupid, stupid shit, sometimes not even anything sad. For instance, I was at the park today with my kids and the ice cream truck drove by, playing typical ice cream truck music, and upon hearing it, I burst out crying. That is not good. On the other hand, reflecting upon it, I realized the music brought forth so many memories, and while processing these memories, I was full of a genuine love for life, and realized that I want to live for a long, long time. I am not sure if I started crying because I was so happy, or because I am afraid I won't get my wish. Hopefully it's the former. Then again, maybe it's just the tamoxifen.

Vacation from Tamoxifen

I've been under the weather for what seems like way too long. On Tuesday night, I noticed I had a sore throat that started around bedtime. Then my daughter woke us up in the middle of the night to tell us her throat hurt, and in the morning woke up crying and saying she couldn't go to school (which means it's bad, because Ellie loves school). Unfortunately for her, not going to school meant coming to physical therapy with me, then up to work, where she took a nap in my office then threw up in the trash can outside my office. We came home after my work meeting and both took a nap. The only thing worse than taking care of a sick kid is taking care of a sick kid when you yourself are sick. Ugh. By Thursday, Ellie was fine, but me... not so much. I don't feel sick sick, just under the weather and very blaaaaah. And I feel like I'm getting progressively worse rather than better.

Anyway, I'm not writing this as a woe is me post. I'm writing this because I saw my oncologist on Friday, and I was feeling pretty dang crappy at the appointment, and NOT because I was hungover, haha. In fact, my litmus test for sickness is my desire for alcohol, and the thought of wine has repulsed me for four days. The tricky part about being sick is that the appointment was to discuss how the tamoxifen has been treating me, and it's hard to know when you've been feeling soooo crappy for the past few days. The tamoxifen does seem to have some side effects, but of course it's hard to know what is the tamoxifen and what is the cold and what is just... life.

I told Dr. M that the tamoxifen wasn't as bad as I was expecting, which admittedly isn't saying much. Then I mentioned that one thing I've noticed about the tamoxifen is that, in a way, it makes me feel like I'm pregnant: I have a bit of nausea in the morning, higher than normal levels of fatigue, and unexpected aversions/cravings where food is concerned. Then he looked at me suspiciously and asked, 'You aren't pregnant, are you?' I sat there for a second, shocked, before I was able to reply, 'No. NO! I'm definitely NOT pregnant!'

We then discussed the fact that a lot of what I'm feeling isn't textbook tamoxifen, so it may or may not be due to side effects. As Dr. M pointed out, I have been through a lot; I should be tired. That actually made me feel a little better, because I feel like at this point I am supposed to be normal and happy and cherishing life and making the most out of every day because, after all, YAY I AM A CANCER SURVIVOR! Or something like that. But I don't feel that way; I feel pretty blah and crappy - sort of like I had my abdomen sliced open, scooped out, and super glued shut in the recent past! Dr. M nicely pointed out the latter to me, while at the same time not dismissing my fatigue altogether. It could be the tamoxifen. It could also be something else - a thyroid problem, for example. He also mentioned that my MCV (mean corpuscular volume) from my blood draw last week was a little low, which suggested I might be slightly anemic. We also talked about my on and off insomnia, and how that could be a factor, too. He asked me if my insomnia was a 'pre-existing condition' and I said yes, though the tamoxifen certainly isn't helping, because I do have hot flashes at night that wake me up.

The thing is that none of this really matters. There is no alternative to tamoxifen, other than not taking it, which would not be a prudent decision, IMO. I mean, I could always go for the ovarian suppression + aromatase inhibitor, but that would almost certainly have worse side effects. Nevertheless, Dr. M seemed to feel that we should try to tease out the real effects of the tamoxifen to make sure we aren't missing anything else that needs attention. Once we are more certain of the side effects, we can perhaps work toward managing some of them, as needed. As he said, 'I don't want you to be miserable for the next ten years.' Oh yeah? Me neither.

With that in mind, Dr. M invited (yes, invited) me to 'take a two-week vacation from tamoxifen.' The cancer isn't going to come back in two weeks, and 'If the clouds part, and the sun comes out, and you're like ahhhhhhh! then at least we'll know it's the tamoxifen.' Then he said, 'I have a Ph.D. in biology. I understand how it works: you eliminate one variable at a time.' LOL. I joked that he should come in and cover the cancer section in my classes. (And being that he is no Dr. T, he pretty much rolled his eyes at me and said Chhhhhyeaaaaah, right.) He also said that it couldn't hurt for me to take some supplementary iron or try to beef up the amount of iron in my diet to address my low MCV.

As much as I'd like to be like to be like YEEEEHAAAW, no tamoxifen for two weeks! I've decided to give it some time. Whatever the side effects, they are really not terrible. Plus, if I stopped taking it right now and started to feel better, I wouldn't know if it's because this damn cold finally got better or because I stopped taking the tamoxifen. Plus, I think I'm going to re-start taking a multivitamin, and wait, wouldn't that be introducing two variables at once?! See? I understand how biology works, too. LOL. There are so many moving parts in my life right now, there's no way to completely pin down what is causing what, but I will definitely take Dr. M up on his invitation at some point between now and my next appointment with him in six months.

In other news, I e-mailed Dr. T to tell him I was backing out of the surgery. The grown-up professional in me told me I should call him, but then I figured that would be more of a bother for him. Besides, if he were a normal doctor, I would not have his cell phone number, and at best I would be able to call the office and leave a message for him, or e-mail him through the patient portal. I thought I would feel really good after I canceled the surgery with his scheduler and let him know, but then the insecure schoolgirl in me stressed until he responded: No worries, Waning. I support you any way you decide to go. Have a wonderful holiday.

I'm really going to try to have a wonderful holiday. As I told Dr. T in my e-mail, I need a vacation from thinking about all this - hips, cancer, everything. I feel like my stress levels have been rapidly rising as I realize that it is almost December, and before you know it, it will be January, and I will have to go back to work. But that is getting ahead of myself. I really need to stay in the moment and enjoy the remainder of this year for what it is.

DIEP Reconstruction Aftermath: 8 Weeks

Probably the most notable thing about 8 weeks post-reconstruction is that I basically have no restrictions on my activity. I can work toward regaining full strength and function as tolerated. Before, I wasn't allowed to do any exercises involving my core (e.g., sit-ups, crunches, etc.). Because I have a lot (A LOT) of work to do - I seriously cannot even sit up from a lying down position - I'm going to start going to physical therapy twice a week for the next few weeks.

Physical therapy has actually been super helpful. It is so very different from the pretty terrible PT experience I had when rehabbing my hip. I've only done two sessions - one per week - but I've been very diligent about doing my exercises at home, and in just two weeks I was able to regain significant range of motion in my arm. I still have a lot of pain, especially in my shoulder and pectoralis muscle, but my overall function is just so much better than it was before, so I'm pretty thrilled. I am not looking forward to trying to rehab my formerly sliced open abdomen, as I have a feeling that's going to involve a lot more pain, but... eh. I can do it. Riiiiiiiiight.

My therapist has been very good about monitoring me for any signs of lymphedema, which is unfortunately a lifelong risk for me now, because I am missing lymph nodes. Fortunately I've escaped it so far, although I realize that it can rear its ugly head at any time down the road, and I need to be super vigilant about not getting any IVs in my left arm. (Honestly, I'm hoping I'm sort of done with the IV thing.) A sort of funny thing happened, though re: fluid building up. I had asked Dr. T about when I could stop wearing the abdominal binder, and he replied that I needed to wear it for 4-6 weeks. Ummmm, okay... is it 4 weeks or is it 6 weeks? There's a big difference, in my opinion. It's like clothes that are made for 8-10 year olds. WTF? But because I hated wearing the binder, and it was especially annoying after I started wearing real clothes again and trying to make myself presentable to go out in public, I pretty much stopped at 4 weeks, except around the house and while sleeping. It was a little weird to stop wearing it, because even though it was uncomfortable, I felt pretty naked without it after wearing it for so long. And it did offer some support/protection, and of course, the most important function was to prevent fluid from building up in my abdomen.

About a week after I stopped wearing the binder, I ordered a pair of pants online. I have a really hard time finding pants that fit, so I normally wouldn't do this, but it was a place I've bought many pants from, and I know what size to order, and the deal was too good to pass up. When the pants came, I tried putting them on, and they were sooooo tight, I was like OMG I HAVE TRUNCAL LYMPHEDEMA!! and freaked out. Later, I came to my senses and realized, nope, nope, I'm just getting fat. WHICH HELLO, should not come as any sort of surprise, seeing as how between my hips and cancer I've spent, like, two years on the couch (and let's be honest, it's not like I was a superstar fitness guru before that). 

Nevertheless, I asked my physical therapist about it, and she agreed to monitor my abdomen by taking weekly measurements, just to be certain it's bona fide weight gain and not fluid build up. (I'm not sure which one is worse, lol.) She also said that wearing the binder couldn't hurt, and suggested that if the binder was too uncomfortable, that I go out and buy some control-top undergarments made to compress the abdomen. That was actually a pretty brilliant suggestion, I thought, so I hit JC Penney immediately after PT, and was shocked by the number of undergarments designed to tame muffin tops. Who knew abdominal binders could be so sexy? I might just keep wearing my new undies indefinitely. Ha.

In other news, I've been taking tamoxifen for 22 days, and I am still fine! I've had a bit of weirdness with chills and some hot flashes, but my morning sickness is gone, and I'm still sleeping pretty well. I have physical therapy tomorrow and Friday of this week, and on Friday I also have a post-op appointment with Dr. T. I know he is going to propose doing a revision surgery, and I'm not at all sure how I feel about that. I guess I will at least hear him out and then reflect on it for a bit. Things are just so good right now, why mess with them? On the other hand... well, let's just say the other hand is overloaded.

DIEP Reconstruction Aftermath: 7 Weeks

It's hard to say whether there has been no improvement in the past week, or if my expectations are just getting higher. I still feel good, but not stellar. In some ways, I feel like certain things are getting worse, like itching in my abdominal scar and the pain in the rib that Dr. T messed with. Also, after lots and lots of sitting - first on a road trip involving 20 hours in the car over a period of three days, followed by deciding to go back to work - I've learned a couple things. First, sitting is really bad for my abdominal tightness; I'm pretty sure the tightness is worse than a week ago. Second, my hips (remember my hips?!) are still a problem in a bad way. Oh my God. I don't actually have the energy to whine about this right now, because I've basically spent the past few days in misery, feeling sorry for myself, and I'm done for now. But seriously, oh my God.

So to make a long story short, I'm pretty much where I was a week ago except my hips are killing me.

I'm also still adjusting to taking tamoxifen, which makes me tired if I take it in the morning, and gives me morning sickness if I take it at night. Before experimenting with anti-nausea medications, I decided to try taking the tamoxifen at yet another time. I'm now on day 3 of taking it at 4:30 PM, and that actually seems to be better so far. Minimal fatigue, minimal hot flashes, minimal nausea. According to my husband, I toss the covers off in the middle of the night and take off my pajamas, then get cold and steal the comforter back from him, but as long as I can do it in my sleep, it doesn't bother me. :) Along the same lines, I am thrilled that my insomnia is pretty much gone, or at least back to my pre-cancer levels. I've been about a week without a sleeping pill or melatonin, and I've been sleeping great. I did take half of a hydrocodone for the past few nights, but that was truly because of pain and not cheating for sleeping.

Overall, I feel good, but not great. I'm a little disappointed in the lack of progress because I was hoping to feel STELLAR by now, and I definitely don't. On the upside, I am in a good place emotionally. I at least feel very even-keeled, which is practically a miracle for me. I continue to feel blessed by the goodness that surrounds me, and I have really been trying to focus on that.

Blame the Tamoxifen

I've mentioned before that I worry about being a hypochondriac, except I'm pretty sure I'm not because whenever I go to the doctor, I'm told I need surgery. Or that I'm going to have a baby. Nonetheless, my worry over being a hypochondriac translates into me not knowing if the symptoms I feel are real, or if they are part of my hypochondria.

Anyway, I started to take tamoxifen a week ago. I was pretty sure it would either kill me, or make me want to kill myself, but it hasn't been that bad. Really and truly, it hasn't. Unfortunately, I created some weird mind game within myself where I think I was blowing off any side effects as hypochondria, when there do actually seem to be some side effects, which I'm finally realizing are real.

My oncologist had told me to take it at different times of the day to see which one made the side effects the most tolerable. He said a lot of women like to take it in the morning so they have hot flashes during the day, rather than at night when they're trying to sleep. So that's what I did initially, because the last thing I need is another factor contributing to my already really bad insomnia. But, the hot flashes are not bad; in fact, I don't even know if they are real or not. Part of that could be that I'm always getting weird hot and cold flashes and feeling gross and unsettled, so maybe my hormones have always been fucked up, which could perhaps be why I have cancer. Just a thought.

One thing I do notice is that I. am. tired. As in... a lot more tired than I should be. Then again, I'm tired a lot, because I don't sleep well or enough and I stress excessively about everything. And I'm recovering from surgery, yada yada yada. Still, I feel like I shouldn't be so slothly. So I blame the tamoxifen for that. Because I can.

I asked people on breastcancer.org what time of the day they take their tamoxifen, and an overwhelming majority said at night, because of the fatigue issue. So sometime last week, I switched to taking it at night, while the kids are taking their nightly shower - so around 7:30ish. Doing this seems to help me sleep better ( = OMG, a miracle). Even if it is a placebo effect, who cares, right? Sleep is sleep, and I don't notice excessive fatigue during the day. At least, it's no worse than when I take the tamoxifen in the morning.

Unfortunately, taking the tamoxifen at night gives me morning sickness, for whatever reason. It seems kind of cruel considering I don't recall ever even having morning sickness when I was pregnant, so WTF? It took me a while to figure out that this is real, because the first time I took it at night, I also ate sushi and had several glasses of red wine, after not drinking much at all for quite some time. The next morning, I figured I was either hung over or it was bad sushi, or both. (Like tamoxifen, sushi is an easy target for blame, especially when you live in a landlocked state.) However, a few sushi- and drink-free days later, what do you know, I still wake up feeling nauseous. I feel like I am going to throw up, but I don't. It usually goes away by late morning, but it is not pleasant. It's somewhere in between mildly irritating and completely disruptive. Bleck.

So... starting Week 2 of Adventures in Hormone Disruption, I'm going to try taking the tamoxifen a bit earlier - perhaps with dinner. Since I KNOW it makes me tired, I'm a little worried about taking it too early. On the other hand, the nausea when I wake up every morning is annoying enough that I'm not sure I can live with it for another 9 years and 358 days. And so the adventure continues.

DIEP Reconstruction Aftermath: 5 Weeks

Five weeks and feeling good!

Two days into taking tamoxifen, and my world hasn't fallen apart. I am my usual crabby self, and I haven't even had any hot flashes. Knock on wood.

I'm still having occasional shooting pains in my chest and abdomen as I regain feeling, but it's manageable. I also get itchy a lot, but it's manageable, not to mention something I'm used to. (I've been itchy my whole life.) I still have quite a bit of tightness in my abdomen, but it's manageable. I'm upright for the most part for most of the day.

Oh! And the biggest news is that my insomnia is improving in a major way. I've been trying to wean myself off of sleeping pills, and it's going pretty well. I've been sleeping about 5 hours a night and it's AMAZING. It's still not enough, but it's so much better than it was. I'll take it.

Probably the best part of all of this is that I am loving not working. Waaaaaay too much. I'm kind of scared of how much I enjoy doing nothing all day. I knew that work stressed me out in a major way, but OMG, I had no idea just how much. I feel like I need to go back to work just so I don't get used to this level of happiness and stresslessness. (Is that twisted logic? It's like the Seinfeld episode where Jerry and Elaine are arguing over who should get to fly first class, and Jerry's logic is that since Elaine has never flown first class, it's easier for her to fly coach, because she doesn't know anything different. NOW I KNOW DIFFERENT. Ahhhhh!) I hope I don't become permanently lazy.

Interestingly, when I was debating what to do over my work situation, my plastic surgeon wrote me: As far as the recovery, I typically tell folks to anticipate 4-6 weeks to be completely conservative. You are very young and in great shape so should heal very well and much more quickly. I have to say that while I do feel good, I don't feel that good. I'm REALLY GLAD I ignored this, because if I had made plans to go back to work after, like, 3-4 weeks, I'd be one unhappy camper right now.

Anyway, no complaints. Life is good.

9 Years, 364 Days to Go

I took my first tamoxifen today.

I got up, and first thing, before I could even think about it or make an excuse about why I shouldn't take it, went downstairs and just swallowed the damn thing already (along with my vitamin D, vitamin C, multivitamin, and baby aspirin). The sort of funny thing is that I almost took it by accident yesterday, because I wasn't really paying attention as I took all of my pills out of their various containers, and the tamoxifen happens to look a lot like vitamin C. (Do I even need all these vitamins anymore? Who knows?)

After I swallowed it, I waited for the world to end, and it didn't.

All that happened is that I immediately felt nauseous. (And yes, I'm aware that was 100% psychological.)

I'm waiting for the side effects, but so far, nothing. No cataracts yet, no 20-pound weight gain - praise God. (Who are we kidding? It has only been four hours.)

So that's one pill down, 3,646 more to go. That's 10 years x 365 days/year minus three days for leap years in 2016, 2020, and 2024 minus the one I took today. So 3,650 - 4 = 3,646.*

Not that I'm counting the days or anything.

* ETA: And I'm a idiot. Leap years have an extra day, duh. (Thank you, Lexi!) Well, what is three more days in the large scheme of 3,650?

DIEP Reconstruction Aftermath: 24 Days

It is Friday, so I feel like I should be making the trek up to the University Health Clinic to see Dr. T. However, at my last appointment, he said things looked good enough that I do not need to go back for another month, which is actually going to end up being more like six weeks. So hopefully he meant it when he said everything looks good, and complications this far out from surgery are rare. My fingers are crossed.

At any rate, today was a big day for me (insert slightly sarcastic tone): I ran errands! First I went to the post office to mail a package, then I went to the pharmacy to finally have my prescription for tamoxifen filled. While I was waiting, I went to the liquor store and bought three bottles of wine, a bottle of sake, and a bottle of port, because we are having friends over tonight and I was indecisive about what we should drink. I'm pretty sure that carrying these out to the car violated my lifting restrictions, but sometimes sacrifices have to made in the name of alcohol. LOL.

So now, I've got a bottle of tamoxifen sitting on my kitchen table, and I just need to grow some balls boobs courage and start taking it already. Ugh, ugh, ugh! Have I mentioned that I fucking hate cancer?

But the good news is that it feels really good to be getting back into the swing of things. And while running errands is not particularly exciting, it is exciting to not feel trapped inside the house anymore. Until today, the most I had done was drive my son to preschool and drive myself to go get a massage. Granted, I don't see any long trips to the mall in my near future, but it's nice to know short trips are completely do-able (and I almost never go to the mall anyway).

All in all, this is far less down time than I had imagined - or at least far less complete, lying-on-the-couch down time. Heck, I ordered a whole season of True Detective and have only watched three episodes. I feel good enough that I want to start setting some goals to get myself through the end of the year, and start laying the foundation for my 'new normal.'

Tamoxifen, Here I Come

I pushed it way too hard today. Sadly, 'pushing it' meant driving myself to my appointment, six blocks away, with my medical oncologist, dropping my daughter off at a friend's house along the way. I came home and was wasted tired, and despite napping, still feel horrid. It's beyond tired; it's that all-consuming, my body feels like it weighs 400 pounds tired.

Anyway, after scheduling appointments and canceling them I don't know how many times, I finally met with Dr. M to discuss part 2 of this never-ending nightmare. I fully expected to have a conversation about tamoxifen vs. ovarian suppression + something called an aromatase inhibitor, but it wasn't even an issue. It was so not an issue that I sort of questioned him about it, wondering if he remembered who I was, what my story was, the conversations we had had in the past.

To make a long story short, because I am tired, tired, tired, tamoxifen is the traditional route for pre-menopausal women. Or, to be more precise, it is the only route. Tamoxifen affects estrogen, and since my cancer is strongly estrogen-driven, taking tamoxifen will reduce my chances of a recurrence by 50%, according to Dr. M. I need to take it for at least five years, maybe ten. We'll cross that bridge when we get there, if I even get there. The only reason to not go this route is because of my history of DVT and the fact that I'm only 40. Tamoxifen can cause blood clots, and though it's fairly rare, I am at higher risk for this simply because of my history of DVT. As for being 40, which is 'very young' in Cancer Land, some oncologists would argue that I might want to be more aggressive. (In fact, one has.) Tamoxifen is the conservative route for me; ovarian suppression + aromatase inhibitor would be more aggressive.

I'll be honest - I've been DREADING ovarian suppression, which would mean getting shots every month to force me into menopause so that I could take an aromatase inhibitor. One of the major side effects of this is premature arthritis, and joint pain/degeneration, which is the second to last thing I need (second only to a recurrence, lol). I've gone back and forth between which route I want to go; there is a fine line between fending off a recurrence and ending up in a wheelchair. I had been leaning toward the more aggressive route after reading too many stories about how scary it is to have cancer at 40, but... I was easily persuaded back to tamoxifen with Dr. M's endorsement.

The more I think about it, no matter what route I choose, I'll never feel confident that the cancer won't come back and metastasize, and eventually kill me. Never. So quality of life matters to me. If I have a limited number of years in this body, I want them to be good years. Of course, we all have limited years. I keep thinking back to a professor I had in grad school who, despite being an exercise physiologist, complained about how the benefits of exercise were often exaggerated. As he used to say, we should not be espousing the idea that exercise will add years to your life, rather life to your years. It's about quality of life, not necessarily living longer. We can do everything right and still die before we think we should.

Dr. M said he was not overly concerned about my DVT, given that it was provoked by surgery. I don't have a clotting disorder, so my risk of developing blood clots as a result of being on tamoxifen is small. My cancer is not overly aggressive, and my oncotype DX, which predicts the probability of a recurrence, is low. Dr. M said the data showed that the women who benefited from a more aggressive therapy were those who had undergone chemotherapy for lymph node positive cancer who were under 35. So that seals it. Just as I didn't need convincing that I would have only a small benefit from chemo that was not worth the risk, I didn't need a ton of convincing that there was not compelling evidence that the benefits of the more aggressive route would outweigh the effects it would have on my quality of life.

I left with a prescription for tamoxifen, although Dr. M said I didn't need to start taking it right away - 'when you're ready.' He did say he would like me to start taking it before 2016, but that he understood that I've been through a lot, and this is all just... a lot. A lot to take in. He also said he did not think I would find the side effects to be horrid, and counseled me to not read too much on the Internet. LOL. After I've taken it for a month, I need to see him again so he can run some tests on me and make sure everything is copacetic. I made an appointment to see him again on November 20th, which means I need to start taking the tamoxifen by mid-October.

So basically I need to focus on recovering so that I can prepare to attack the natural order of my body in a new way. Fun stuff. Said no one, ever.

Consultation at University Hospital

I'll start off by saying that today was a good day.

I went up to University Hospital for a 'consultation,' which my husband set up, based on a few e-mails I forwarded to him, and I had NO IDEA what to expect. Overall, the appointment was not extremely informative, but at the same time extremely helpful in that it was NOT informative.

Let me explain. 

Basically the medical oncologist we met with told me the exact same thing Dr. M told me, which is good, because I really liked Dr. M, and wanted to be able to trust that he was current in his knowledge, and that I could get good care close to home. At the same time, so much of what Dr. M told me was that there was a lot of uncertainty, and that the path for my treatment would have to be based on gut feelings and not data, which is difficult to swallow, especially as a science-oriented person. Of course, I saw Dr. M before I had the results of my oncotype, so there was even more uncertainty, but apparently even with the oncotype results, there is no clear-cut recommendation. 

I guess part of me was sort of thinking that because I was going to University Hospital, the folks up there would be able to enlighten me on all of the latest information and treatments, and they did, but what they told me wasn't any different than everything I've been told all along. All the doctors I had seen prior to this had cited the same studies, and given me the same ambiguous recommendations. This is strangely disappointing, and yet a huge relief all at once. I'm relieved that the care I've felt good about is in line with what is supposedly The Best Care available, yet disappointed that The Best Care available doesn't provide more definitive answers. I suppose you can't have it both ways.

The medical oncologist I saw today, Dr. E, was extremely thorough in all of his explanations. even more than Dr. M. This, of course, appealed to my husband, who also works in a medical field, and loves to talk about the nitty gritty details of clinical trials. However, the clinical trials that Dr. E cited were the same ones Dr. M had talked about, as apparently there are only two major studies available that are really relevant to my situation. The funny thing is that Dr. E spoke to us as if he knew that we knew exactly what he was talking about. If I weren't a cell and molecular biologist with numerous consultations with Dr. Google, I wouldn't have had any idea what he was talking about. I'm not sure if it's just dumb luck or if he read my file really closely before the meeting, because he definitely talked to me in a way that could have easily been a few levels above my head. 

The major points he made with confidence were:

1. He agreed with Dr. M that I did not need to take Xarelto anymore (YAY!!), that post-surgical DVT was different than 'unprovoked' DVT, especially since it was the result of hip surgery, which carries a higher risk of DVT than other types of surgery. However, he did say that because I now have a history of DVT, I am at increased risk for blood clotting. It isn't the same risk as unprovoked DVT, but it is still a risk factor that we should consider.  
2. He concurred that I would not really benefit from chemo. He said that he would absolutely not recommend a 'full' chemo, but might consider a 'light,' 'TC chemo,' which I believe is what both Dr. L and Dr. M alluded to at some point. 'Light' chemo MIGHT reduce my risk of recurrence by 1-2%, based on some data. However, those data were based on women with higher risk cancer than mine. OTOH, in most cases, those were older women, and just like Dr. M said, we had to add in additional risk because of my age, which brought us back to the 1-2% range. However, when you consider the side effects, some of which can be serious (e.g., leukemia), he didn't feel like it was worth it from a risk vs. benefit point of view.

Honestly, chemo was pretty much off the table in my mind, and I'm not sure what I would have done if he had recommended it. After a while, I told him I really didn't want to do chemo, and didn't need convincing that I didn't need it, and to my surprise, he seemed sort of relieved and said that many of the women he dealt with approached cancer with a no-holds-barred attitude, and wanted to do every treatment possible no matter what, so he liked to be thorough in his explanation of risk vs. benefit, which I appreciate. 

He did say that cancer at 40 is different than cancer at 60, just as Dr. M had said. And it's not just because at 40, you will likely live for more years than you will at 60; the cancer itself is different, for reasons researchers are trying to understand. He said that recent pregnancy was being investigated as a risk factor, along with ovarian function (which is obviously related to the former). His gut feeling was that it had to do with younger women having better ovarian function, and was therefore somewhat of a proponent of ovarian suppression.  

So we talked about ovarian suppression, whether it be by disabling my ovaries medically, through monthly shots, or by surgical removal. This, just so that I could take a class of drugs for post-menopausal women called aromatase inhibitors (AIs) Just as Dr. M and Dr. U said, ovarian suppression + AI was, in some cases, more effective than just tamoxifen. In some cases. Dr. E went on to explain that the results of the study that this was based on were difficult to interpret because there were two groups in the study: those who had not done chemo, and those who had done chemo. For those who had not done chemo, there was no significant benefit to ovarian suppression vs. tamoxifen. In fact, both groups in the non-chemo group fared very well. It was for the group who had done chemo, which likely suggests a more aggressive and later-stage cancer, that the ovarian suppression + AI was extremely beneficial, reducing the risk of recurrence by 35-40%. At that point, I was wondering why ovarian suppression would be at all beneficial, and as if he had read my mind, he said that the real problem is that there were very few 40-year-olds who fit my particular profile in the study. (Ahhh, that difficult situation of being the 'n of 1' as one of my professors used to call it.) 

I've since done some consulting with Dr. Google, and found an article that summarizes one of the studies he was talking about. I love this quote from the article, which basically sums up the difficulty of my particular situation: 

For me, if I go back to my practice on Monday, and I see a woman under 35 with a hormone sensitive breast cancer, I will now know what to advise that woman. Also, when I see the woman who is 48 and has a small, nonaggressive breast cancer, I will feel more comfortable that she can do very well with tamoxifen alone.

As Dr. E pointed out, I'm exactly in the middle. 

Goldilocks. 

Dr. E also made a few other interesting points that had not come up before: 

1. The oncotype DX assumes that you will take tamoxifen for at least five years. If you don't, the results mean nothing. In other words, the entire test is based on the incidences of recurrence in women who took tamoxifen post-surgery. Even if your oncotype DX is a zero, that means NOTHING if you don't undergo anti-hormone therapy.
2. While he agreed that I did not need to be on Xarelto anymore, he said there were not any definitive data that taking aspirin while on tamoxifen would help. Estrogen-driven blood clotting cannot necessarily be negated by aspirin? Or something? 

In the end, he recommended ovarian suppression plus an aromatase inhibitor, but with hesitation. He said this was based on two things: my prior history of DVT, and my age. Without the DVT, he would be fine with tamoxifen. If I were slightly older, he would be fine with tamoxifen. But... I'm in no-woman's territory. And I get the feeling he wanted to err on the side of aggression. 

I think I'm opposite most women. 8% versus 6-7%, with margins of error of 1-3%, doesn't make a treatment seem that significant to me, especially when you consider the side effects. OTOH, I am done having kids and am not particularly attached to my ovaries or menstrual cycles. At the same time, I dread the effects of menopause in the same way I dreaded having a mammogram. The mammogram turned out to be not a big deal at all - nothing like having your boob slammed in a car door, which is the comparison I had heard via some e-mail meme pre-Facebook. If menopause is not as big a deal as it is made out to be in the same way that a mammogram was not as big a deal as it is made out to be, then maybe I'd be okay with it. It's definitely food for thought. 

After Dr. E's visit, he said that a radiation oncologist was planning to see us. He also said that we could consult with their surgeon if we wanted, but he was confident she would not say anything different than my surgeon, that everyone agreed that re-excision for positive margins for DCIS was what anyone would recommend. So we declined the meeting with the surgeon but agreed to the meeting with the radiation oncologist, which was actually very informative, since I have yet to see a radiation oncologist. 

We actually met with both the chief resident and a radiation oncologist, who informed us that the chief resident was graduating tomorrow, so she was going to let her do all of the talking. Both of them were super duper awesome, which is actually unfortunate, since it would be completely impractical for me to have an out-of-town radiation oncologist. However, they provided very good information about what to expect from radiation therapy. A lot of this centered around side effects, some of which were somewhat alarming. These included things I already knew, such as fatigue and pain, but also increased risk of rib fractures, scarring on my lungs, and heart problems. I sort of rolled my eyes about the rib fracture, seeing as how I apparently already fractured my rib without knowing it, and both of them knew exactly what I was talking about, which means they really read my record carefully, which is fairly impressive.

Oh yeah, and a rare side effect of radiation therapy is... cancer. Radiation-induced cancer. This brought me to the point that I've always pondered - how radiation can both cure and cause cancer. The radiation oncologist did a nice job of explaining how cancerous cells had damaged checkpoints and therefore were killed by radiation, whereas normal cells can repair themselves, even with therapeutic doses of radiation. She went on to say it was true that some cells did not respond to radiation, but this was very rare, then added that if I was opposed to radiation, I should consider a mastectomy. LOL. I assured her that as a science-y person, I believed data, I had just never heard a great explanation for how radiation worked without causing healthy cells to become cancerous, but that her explanation was the best I had heard. She assured me that the data showed there was a 1-2% chance of developing cancer as a result of radiation therapy, which is basically the same chance of developing DVT post hip surgery. I wonder if I should believe that my bad luck has already been exhausted or whether I just have bad luck in general. Ha. 

Anyway, apparently doing radiation over the course of four weeks as opposed to six is The New Thing. They said they do four-week treatments at the medical school, but warned me that some places still consider six weeks to be standard, and that I might want to consider questioning this if it came up. Then the radiation oncologist added that, to be fair, there weren't actually any data for women in my age range, which I'm starting to realize is the norm. However, there were plenty of data to suggest that four weeks of radiation in other age ranges were just as effective as six weeks, and there were no data to suggest that this should be different for women in my age range. So basically this was good information to know if I wanted to advocate for myself for a four-week vs. six-week course (which would actually be nice). A four-week course of radiation delivers the same dose overall, just in a shorter time frame. It is three weeks of radiation to the entire breast followed by one week just in the spot where the tumor was. In a six-week course, it is five weeks to the entire breast and one week to the spot where the tumor was.

Since they implied I should try to get a 'good' and 'current' doctor, I asked for a recommendation for a radiation oncologist in town, and was happy that the doctor they suggested was one that had been recommended by a colleague. I like it when doctors have multiple references, especially after they emphasized the importance of making sure the radiation treatments would stay away from my heart (especially since you're only 40!). Somehow, although radiation has always been a part of the treatment plan, I haven't met with a radiation oncologist. Setting up an appointment is on my 'to do' list for tomorrow. 

Ultimately, I'm glad that I went. It was good for peace of mind, but I am fairly sure I want to stick with Dr. M. I had a sleepless night last night, despite taking part of an Ambien, partly because that is the norm for me, but also because I wasn't sure what I would do if I got radically different advice today. Although Dr. E explained everything in a slightly different way than Dr. M, it really didn't change the overall jist. Maybe I'm biased toward Dr. M at this point because I'm not sure how I feel about ovarian suppression, and I want a doctor who understands that, and Dr. M definitely does. Of course, I don't want to choose a route that is stupid from a statistical standpoint, and after visiting with Dr. E, I'm confident that opting for tamoxifen might be slightly riskier, but is by no means reckless. At any rate, now that I have this additional information, I feel like I can go forward in a more informed and confident fashion. 

I always feel sort of weird 'shopping around' for opinions, but apparently they are very used to this at University Hospital, and treated it very much like a second opinion from the start. I feel comfort in knowing that I can always go back for another second opinion if I feel like I need it. I think the tricky thing about my cancer is that it is both straight-forward and not straight-forward at the same time. It is straight-forward in that it is early stage, not in my lymph nodes, hormone-sensitive, and not super aggressive. This means that after radiation therapy, whatever treatment route I choose, it is unlikely to have a drastic effect on the outcome. Even if I had an oncologist who said I should do nothing, or no oncologist at all, I'd still have a much greater chance than not of no recurrence in 5-10 years. As Dr. M said, there is an 80% chance that everything I do with him will be a complete waste of time. OTOH, it is perhaps possible that I could greatly reduce my chance of recurrence with other therapies; those chances are just unknown. A 10% to 8% chance doesn't seem huge to me, but a 10% to 5% chance does. Unfortunately, as both Dr. M and Dr. E concur, I'm the one who has to decide. Doctors can give me data and talk about clinical trials with me, but ultimately, it comes down to what I want to do.

As Dr. E told me, my case is ambiguous enough that I could shop around for oncologist after oncologist, and a few would probably recommend chemo, a few would recommend tamoxifen only, a few would recommend ovarian suppression + AI, and a few might be okay with lumpectomy + radiation only. And none of them would be negligent, in his opinion. This is both comforting and alarming at the same time. I can make a choice, and no one will question it. 

At the same time, I feel like it's a pretty big choice.