Sometimes it is just easier to forgive.

I've been feeling strangely emotional all day, on the verge of bawling my eyes out. Yesterday I intended to write a happy post about how I was able to walk around my house and even from my office to the copy machine, and how it wouldn't be long before I was walking again. And then this morning, I woke up and both my hips hurt quite a bit, because I've been overdoing it, pushing myself too hard. I went to PT and I was so excited about walking that I ignored the pain and went to my appointment without crutches, just to show Jerry that I could walk. Of course he remarked immediately that I wasn't walking right, and that I really needed to keep using the crutches, or at least a cane. (Um, no thanks to the cane.) I was in pain the rest of the day, to the extent that I came home from work and popped an oxycodone. Now I'm settled down on the couch with my heating pad, writing this. The roller coaster.

But that's not why I want to bawl, nor what I came here to write about. My mind is elsewhere. 

When I got into work this morning, I turned on my computer and went straight to e-mail. I had an e-mail from a colleague informing the department that he has cancer. Esophageal cancer. OMG. I don't know anything about esophageal cancer, but I'm pretty sure it can't be good. I sat for a minute and processed the information, then started to cry a little. 

But you know what the weird thing is? This isn't a colleague I'm friends with. I hesitate to use the word enemy, but if I had one, he would be it. In fact, at the end of the the spring semester, in April, he and I and another colleague got into a huge fight during a committee meeting that landed us all in mediation and ended with the entire department in kumbaya-type meetings with outside mediators. For a few weeks, I cried a lot, and I was so angry I started looking for another job and plotting ways I could screw the department over. LOL. We have hardly spoken since then, except insofar as we have to to do our jobs, which has been about two sentences at a department meeting. Literally. At some point during the hoopla, my Chair came to me and told me that for what it was worth, TJ felt really bad, and since he wasn't sure if TJ would ever apologize to me, he wanted me to know that TJ was genuinely sorry. At the time, I said I didn't want an apology because it wouldn't mean anything after all that TJ has put me and some of my colleagues through, and I didn't ever want to talk to him again - which is awkward, because our offices are right next to each other, but whatever.  

Over the summer, I let go of a lot of the anger simply because I had to. Seriously y'all, I am so dang tired, and anger just takes so much energy. Also, considering all that my department has done for me through the turmoil of the past four years, I can't complain. I know of plenty of people who have lost their jobs over just one health crisis, and I've kept my job with full pay and a lot of time off and/or reduced workloads through three different health issues. I am truly grateful for that. 

The interesting thing about TJ is that while he is truly a jerk to me and many of my colleagues about 90% of the time, he has always had a soft spot when it comes to health issues. And it is very genuine. Like, he's either oblivious or indifferent to the fact that he causes people to suffer emotionally, but as soon as you present with something physical, he is genuinely concerned about your well-being. The discordance is quite remarkable, practically mind-boggling. Both I and my colleague, who had to have a hip replacement a few years ago, have noticed this for quite some time now. When I was recovering from my breast reconstruction, another colleague texted me something along the lines of I know you and TJ don't get along, but he is genuinely concerned about you. He is constantly asking me for updates on how you're doing. What can I say, people are weird, complex, and incomprehensible beings. 

To add an interesting twist to this situation, I mentioned previously that I worked out a last-minute offload so that I'm only teaching 3/4 time this semester. TJ's wife, who also works in the department part-time, is the person who took over my fourth class for me, so we've been working together pretty closely. It's slightly awkward, but she's actually a sweetheart (I can't for the life of me figure out their relationship), and we are both professionals, so it has been fine.  

I knew something was up because on Friday of last week, TJ's wife asked me to cover her exam for her on Monday. She said needed to take TJ to the doctor, and it was an appointment where he needed someone to be with him. She apologized that it was last-minute, but said it was something that had just come up, so I figured it was something semi-serious. Seeing as how she was asking me to cover a class that was supposed to be mine, of course I immediately said yes. I have to admit that I was slightly curious, but I didn't pry, because I'm not a prying type of person, and even if I were, we don't have that type of relationship. 

On Tuesday, TJ and I passed each other in the hall. Usually we both look down at the floor and avert our eyes so we don't have to acknowledge each other. But to my surprise, he stopped and smiled at me, and commented on how much better I was getting around. Then, somewhat awkwardly, he said, 'I've heard such fantastic things about you from [my wife]. She is so impressed with how organized you are and how you run the class. She says you are so great to work with.' And the thing is, he was very genuine; there's no reason he had to say anything, seeing as how we've been looking away from each other when we pass in the hallway for, like, eight years now. LOL. The other weird thing is that during this interaction he actually seemed... happy? I'm not sure if that's quite it, but it was definitely something different from his usual grumpy demeanor. And I say that without judgement, as I, too, have a grumpy demeanor, so that's actually one thing we have in common.

I think I stared at him for a couple of seconds with my mouth open. I was actually pretty embarrassed by this shocking olive-branch offering, but I did my best to remain cool, and thanked him, told him how grateful I was to his wife for stepping in at the last minute, then continued crutching down the hall. After further reflection, I figured he must have gotten good news at his doctor appointment. But, in fact, it was the opposite. 

And now this. 

I've been crying on and off as I'm writing this, and I don't understand why. It is hitting me even harder than when my good friend told me she has breast cancer. I guess when it's a friend and someone you love, you know how to feel and what to do; you just feel sad and sorry, and you offer to bring meals, drink wine together, whatever the friend needs. It is tough emotionally, but at least there's an accepted reaction in place. 

But this. This is different. Since my own cancer diagnosis, I started following cancer blogs. Several of those bloggers have passed away, and I've been surprised by how emotional I've felt about it. In fact, my post about Ashleigh Range is the most viewed post of all the posts I've written here. With cancer and hip dysplasia, some of the deepest and most meaningful connections you make to people are on the Internet, because the people in your everyday life just don't understand what you're going through. It's hard to know how to mourn appropriately when an 'Internet only' friend passes away, because there aren't protocols in place for that. I feel like this is similar territory. How do you react appropriately for someone you don't get along with - someone who has, quite honestly, harassed you and treated you awfully, but yet someone you care about and want to support, because after all is said and done, you're both human, and esophageal cancer isn't something you'd wish on anyone? There aren't protocols for that. 

I keep thinking back to our exchange on Tuesday and wondering what must be going through TJ's mind right now. While my own prognosis has been as good as it can possibly be when it comes to cancer, I know that a cancer diagnosis, no matter how 'good,' changes you. I know some people can say definitively how cancer changed them - for better or for worse - but I'm one of those who feels more ambiguous. I don't understand the ways in which cancer has changed me, I just know that it has. And I know for sure that in the early stages of the diagnosis, where TJ is right now, when you don't know the details of the cancer - what grade, what stage - all sorts of things go through your head as you contemplate your own mortality. You reflect on all the things for which you're grateful, the things that make you bitter, the people you love, the people you despise, the things you regret doing, the things you regret not doing, the things you hope to do, the things you wish you hadn't done, the person you are, the person you wished you had been, the life you have, the life you didn't have. It is nonstop. And it is so, so hard. That much, I know. 

And I now know my interaction with TJ on Tuesday was some response to this crisis you go through when you're diagnosed. I understand that's his apology to me that he never gave me earlier in the year. And I want to say, I forgive you, but how can you do that when someone doesn't actually tell you they're sorry? 

Just a few days ago, I watched a video that has gone semi-viral on social media about a woman who was an Auschwitz survivor. The video documented her process of forgiving the Nazis who killed her family and performed experiments on her and her twin sister. My response to the friend who posted the video was an immediate and definitive, That woman is a better person than I am. And it's true. I cannot imagine. I truly cannot. At the same time, the message was that forgiveness is power. That woman found power in her ability to forgive even the most unspeakable acts that have been done in the history of humanity. I have no idea how, but she did. She felt that was more powerful than clinging to her much-deserved anger and bitterness. It was her choice, and she chose forgiveness. 

My situation isn't even in the same universe as that woman's story, so please don't interpret this as me comparing having a jerk of a colleague to that of an Auschwitz survivor. I hope that those of us who can specifically relate to such horrific acts will be few and far between. Instead, I want to focus on the message of forgiveness. That message resonates with me, and helps guide my feelings, and how to respond appropriately. 

There are unspoken words here, but I know they're something like this:

I'm sorry.

It's okay; I forgive you, and I'm so sorry you're going through this. I truly want to be here for you and your wife.

Cancer. It sucks. Suckity, suckity, sucks. And as a 'survivor' - at least for now - I wouldn't be able to live with myself if I weren't there for someone who's going through this awful experience, no matter our past relationship.

Maybe it's just selfish, but sometimes it's just easier to forgive.

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.

Meet the Parents

So, everyone has complaints about their parents. Of course, if I go by Facebook alone, it feels like I'm the only person who has complaints about my parents, but I know better than that. And the thing is, I think I actually have a better-than-average relationship with my parents, especially my mom. Unfortunately, I am having a very difficult time with my parents right now. Some of the difficulty stems from the fact that I have been extremely tired, and therefore very irritable, over the past month, and especially the past few weeks post-surgery. Little things I might normally be able to blow off stick more, like bacteria getting trapped in an open wound and then getting inside the body, when they should normally just be hanging out on the skin.

But, the main crux of the problem is that my parents are SUPER negative about doctors, drugs, and the U.S. health care system in general, and, quite frankly, pretty ignorant about most things medical. Neither one of them ever sees a doctor regularly, and neither one of them has any major health problems, so their medical experiences are mostly limited to their dealings with the doctors my grandparents saw, my mom's experience giving birth to my brothers over 40 years ago, the time my dad broke his ankle when they were hiking in France, and the things they read, mostly in the New York Times. Despite this limited experience, my mom loves to spout off personal anecdotes about horrible doctors and/or the inequities in U.S. health care system, and it is often the same story I've heard umpteen times because she has so few of them. The thing is that I don't necessarily disagree; some doctors are horrible. Then again, some patients are horrible, and I bet my mom is one of them. If a doctor said something horrible to her, she probably deserved it. LOL. Also, I agree that society tends to be over-medicated and that drugs cannot and should not be used to treat every condition. However, cancer is not one of them, in my opinion.

The thing is, it has always been this way. The fact that I had hip surgery last summer, which really didn't help and then led to DVT, is making matters worse. And yes, I complain about my orthopedist. And I think my physical therapist pretty much sucked, too. All of these things have added fuel to my mom's firestorm of negativity, and made me wary of sharing things with her, even before this trip to Cancerland.

I have tried not to say too much when my parents make annoying comments because I truly understand that they do not mean badly. I honestly think they just can't help being annoying. LOL. My mom has very strong and weird opinions and no filters whatsoever, and when she doesn't know what to say, she says stupid shit. Her main 'go to' statement lately seems to be, 'That's so weird' when something is really not weird at all. I've actually called her on it a few times, but she doesn't seem to get it. For example: 

Me: We need to wait to get X, Y, Z test results, and they aren't back yet.

Her: That's so weird. 

Me: Why is it weird?

Her: It's weird it takes so long.

Me; Why is it weird? There are a lot of people with cancer and not very many pathologists.

Her: It just seems like it should be faster. (This is usually followed by some negative comment about health care in general, or about how she bets they get instantaneous results in More Advanced Countries, or about some article she read in the New York Times about tests for some unrelated medical condition.)

We got off to a bad start as far as Cancer Conversations go right off the bat. I mentioned in a previous post that my parents are academics and immediately started to contact all the people they know who know people. In one of the e-mails they got from a friend at the University Hospital medical school, he mentioned that breast cancer was usually treated early by lumpectomy followed by chemotherapy. I really don't think the friend gave that a lot of thought; I think he was just trying to give my parents an idea of what to expect because they seemed freaked out. Unfortunately, even though this friend is not an oncologist, somehow this 'lumpectomy + chemotherapy' is what my mom clung to, declaring, 'I am so happy to hear you won't need radiation!' I replied that I would rather do radiation than chemo, to which she replied, 'I don't know... I decided radiation isn't a good idea after watching what my dad went through.' Ummmmm... okay? Then she went on to say that so-and-so did chemo and she didn't even know she was doing chemo, and 'I don't think her hair even fell out,' so 'obviously chemo has come a long ways.' Yeah... okay? And JUST A HINT, my friends, if someone you know went through radiation or chemo and you didn't even know, it doesn't mean it was a walk in the park, it means you aren't a good friend or colleague. 

So needless to say, I haven't been sharing a ton of information with my parents, because their responses usually fall into one of three categories: a) negative feelings about a treatment - if not based on something that happened to my grandfather, then something based on an article from the New York Times; b) impatience that it is taking so long for a test result (don't get me wrong, I get impatient, too, but I also understand that repeatedly declaring, 'I don't understand why it takes so long!' in an angry voice does not make it take less time); or c) 'That's so weird.'

I did get suuuuuper irritated, I think even openly so, when I told my parents I had to have another surgery. Of course, my mom's first response was, 'That's so weird,' followed by questioning why they don't do the pathology analysis while you're still in surgery, and just take out more right then and there, if necessary. (Some surgeons do that, you know.) And also: why didn't the surgeon catch the DCIS in the first place? ('That's so weird.') When they asked when the second surgery would be, I said I wasn't sure, because my doctor wanted the results of the oncotype first, and of course this made my dad upset because Everything takes so long!! Then my mom said my surgeon better try to get me in quickly because, 'She's the one who messed up!' She followed up a few days later by telling me about an article that just came out in the New York Times, in which the researchers found that if surgeons took out a little more tissue to begin with, it would greatly reduce the need to go back in and take out more (ummm, duh). 'Hopefully your surgeon read that article,' my mom said. (Yes, it sounds like a very profound and life-changing article, something all competent surgeons should read. I also hear that if you just get your head shaved, it will greatly reduce the number of hair cuts you have to have in a given time period.) I tried to tell my mom that the surgeon had already taken out a lot considering the invasive tumor was only 1.3 cm, and she took out over 4.5 cm, including going all the way down to the fascia on my pectoralis muscle. I said that I had had a conversation with the surgeon about how much to take out, and she admitted it was hard to know, especially since the DCIS did not show up on the mammogram or MRI, and again, you have to weigh how much you want taken out versus just having a mastectomy, which I obviously opted not to do. My mom responded to this with, 'That's so weird.' 

I guess there is only so long that I can hide my annoyance, because my parents finally caught on. And yesterday, my mom and I sort of had it out, as much as we have ever had it out. We are not a confrontational family; instead, we hold everything in and either withdraw or get passive-aggressive on each other. Unfortunately, I'm not sure how productive our conversation was. While it did allow me to at least realize that I DO have a lot of pent up frustration with respect to my parents, my mom mostly reacted in a way that confirmed my decision to not tell her stuff, which was 1) denial, followed by 2) extreme hurt, which = okay, so I will never talk to you again if that's what you want (which is NOT what I want, which is why I've been trying to hold everything in for so f-ing long). 

I suppose I could write a book about this, and people actually have written books about this, which at least assures me that this is not an uncommon problem. However, I don't have time to write a book, so I'll just try to hit the highlights. My mom's major complaints were that she and my dad were doing everything they could to help, but that I was obviously not appreciating their help, and was shutting them out. I responded by trying to let my mom know that I knew they were trying to help, but at the same time were not being very helpful. I said that while I appreciated their recommendations as far as providers go, I also felt like I needed some room to try to make my own decisions, and that I felt like they were completely closed-minded about anyone not at University Hospital. Then I explained to my mom how difficult it was for me that she was so anti-radiation therapy, when this was something was pretty much a given from the get-go, and would reduce my chances of recurrence by A LOT, and that I was annoyed that their friend's 'advice' seemed to have become the gold standard that they were expecting in terms of my treatment. I also brought up how negative she had been about my surgeon because I needed a second surgery, and how her comment about how she better get me in quickly since she's the one who screwed up was really not helpful. I mean, trust me, I'm not psyched about a second surgery, and yes, I'm also wary of surgeons because of my experience with my orthopedist, but at the same time, I realize this stuff happens.

Also, in addition to the fact that I have been downright exhausted for the past month, not only have I been SICK for ten fucking days now, but I have also been in a lot of pain. Which brings me to another gripe: whoever started the rumor that lumpectomy + sentinel node biopsy is no big deal never had one before. Because it fucking hurts. A lot worse than you think, and for a lot longer than you might think. If you know someone who was out kayaking the Mississippi the week after this surgery, then good for her, she is one tough mofo, but don't hold everyone to that standard. Personally, I felt really unprepared for how much this surgery was going to hurt, and on top of that, felt really wimpy for popping pain pills every 4 hours for a full 36 hours afterwards, when apparently every other woman who had this done was competing in a triathlon, or at least going to yoga class immediately afterwards.

I told my mom that over the past few weeks, I was really sick and exhausted, and so part of what she was feeling in terms of me not communicating with her was that I was simply tired. There were times when she called when I was napping, and yeah, I was kind of annoyed she woke me up. She responded in the worst way possible by telling me that the reason I was exhausted was obviously because I was depressed. WTF? Like... I'm not saying I'm not. I have debilitating hip pain, DVT, and cancer. Hello!! I'm at the very least super stressed and emotionally wrung out. But last I checked, the symptoms of depression do not include throbbing pain the breast and hip, inability to lift your arm greater than 90 degrees, and constant coughing, which exacerbates throbbing pain the chest. Now that I have cancer, the only reason I'm allowed to be tired is because I'm depressed?! Unfortunately, this is sort of typical for my mom: all your problems are mental. 

I tried to explain to my mom that I really was sick and exhausted from not sleeping, because I have been coughing for 10 days. And the cough is real. It is caused by a virus, not depression. I am not faking it, and thinking happy thoughts will not make it go away. Then she said, 'Well I figured you were either really depressed or mad at me, so now I know. Obviously you are just mad at me.' Obviously. BUT I AM ALSO SICK. AND EXHAUSTED!! FOR REAL!! And pretty soon, I will also have a freaking concussion from banging my freaking head against the freaking wall! 

Finally, I mentioned in a previous post that my kids had been spending a lot of time with my MIL, probably too much. This is stressful enough for me, even without my mother's input. My MIL has some definitely flaws (don't we all?), and even my husband has an iffy relationship with her. But she is really not a bad person - she's just kind of stupid, and very self-centered. But in a way, she is easier for me to deal with than my own mom. My mom is extremely negative about my MIL - and granted, many of those feelings are justified, and admittedly many come from me. At the same time, I feel as if a lot of it is... jealousy? Resentment over the fact that my kids spend more time with my MIL than with her? But the thing is, I'd much rather my kids spend time with my parents, but they don't make themselves openly available, and it's true I don't ask them to watch the kids very much because when I do, it seems like a huge burden. I understand that they have their own lives, and unlike my MIL, they both have full-time jobs, and did not raise children just so that they could one day have grandchildren. At the same time, I feel resentful that my mom is complaining about my MIL when she basically makes no effort to spend quality time with my kids.

I tried to tell all of this to my mom in our conversation yesterday, and I'm not sure how much got through. She had previously mentioned how much my kids were talking about the Bible, which I am obviously not thrilled about, either. However, just like when my dad complains about how long it takes to get results, my mom complaining about my kids being Jesus freaks doesn't help the situation. I told her that them spouting off Bible stories was the least of my worries right now, and at the moment, the most helpful thing was someone who could help watch the kids, and my MIL provides that help. I added that ANY TIME she wanted to take them, I would welcome it. She responded by nodding, and saying that she needed go. LOL. Because she and my dad are going on a trip until Sunday. 

And it's actually sort of a relief, because I need some time to process all of this, and to be able to respond appropriately and constructively to everything. She left yesterday with a sort of threatening tone... like, don't shut us out, unless that's what you want, then sent me an e-mail this morning that was very similar in terms of tone, pretty much putting the burden on me. I feel like responding don't say and do shit that will make me want to shut you out, unless that's what you want. Fortunately, I think I communicate better in writing than in person, and since she opened the e-mail dialogue by sending me a long and sort of accusatory e-mail, and I know they are out of phone and e-mail range until Sunday, I have until Sunday to compose my response. 

So by the end of this, you're probably convinced that either my parents are horrible, or that I'm horrible, or both. LOL. I can't objectively comment on myself, but I can say that it was not my intention to portray my parents as horrible. They really aren't. And they really do mean well. And they are super sensitive, which is why I have tried not to say much, because again, I don't want them to get so super uptight they won't say ANYTHING to me EVER AGAIN. But I realize I need to handle this situation delicately, and try to write them an e-mail that will truly convey how I'm feeling without alienating them and making them feel like horrible people. 

Fortunately, I have a lot of practice conveying my feelings in writing, so hopefully it will turn out okay. 

Meeting with Medical Oncologist #2

I had a meeting with Dr. M, medical oncologist #2, this morning. I liked him a lot better than Dr. U, and so did my husband. So, for now, he's a keeper. The thing is that he really didn't say anything very different than Dr. U, but I felt more comfortable and at ease with him, like he was someone I could talk to very easily. He was also funny. Not in a HAHA YOU ARE SOOOOO FUNNY! slapstick kind of way, but in a subtle way, which I can relate to. Aaaaand, he was a huge nerd, which I have to admit I sort of love. He actually asked me right off the bat what I did as far as work, and was excited that I teach biology so that he could talk 'higher level science' with me. And his dad worked his whole life for the same company my husband works for, so he 'gets' us. That said, he explained everything very thoroughly, and doodled as he explained everything.

As predicted, he said we would have to wait for the results of the oncotype before deciding on chemo vs. no chemo. However, he did a broad overview of all of the options, and said that as far as cancer goes, there are four basic questions and answers he likes to cover with patients, even if they seem overly simple. These questions are:

1. What type of cancer is it?

2. Where is the cancer?

While most people have heard of Stage I, II, III, and IV, the way the stage is determined is by the TNM system, where T is for tumor size, N is for lymph nodes, and M is for metastasis. 

3. What treatment should we do?

For breast cancer, there are of course two surgical options: mastectomy or lumpectomy. Since I opted for lumpectomy, or 'breast preservation surgery,' I will almost definitely benefit from radiation therapy. We briefly discussed that I would need a radiation oncologist, and the fact that there were only a few in town; however, Dr. M said the radiation would be very straight-forward, and any of the radiation oncologists or facilities would be just fine.

Along with radiation, some sort of anti-hormone therapy is pretty much a given as well. Since I am pre-menopausal, the only real option is tamoxifen. Dr. M explained that tamoxifen was a type of drug called a SERM, or Selective Estrogen Receptor Modulator. A lot of people think it is an estrogen blocker, and it is, but only in breast tissue. Because there are different estrogen receptors in various parts of the body, tamoxifen actually increases the effects of estrogen in other parts of the body such as the bones and uterus, which makes me sort of nervous considering my uterus was 'suspicious' on my PET scan. (I feel a hysterectomy in my future.) He also added that the way estrogen works is that it binds to estrogen receptors, which once activated serve as transcription factors; in other words, estrogen exerts its effects by changing gene expression. (I could tell he was really excited to tell me this, since he knew I would understand. And of course, I came home and immediately Googled estrogen receptors to learn more. For example: http://physrev.physiology.org/content/87/3/905.)

We then had a discussion about my DVT and the fact that one side effect of tamoxifen is increased risk for blood clotting. Surprisingly, once I explained the development of my DVT, Dr. M said he would not have a problem with me being on tamoxifen and a prophylactic dose of daily aspirin. He said that post-surgical DVT was a 'reversible risk factor' and not the same as DVT out of the blue. However, he would defer to my primary care physician. This is good news, though, because I was sort of imagining either being on Xarelto for the rest of my life, or getting forced into having my ovaries removed before I was ready because I would not be able to take tamoxifen. I know this situation merits further consideration and probably some follow-up tests (e.g., a fourth leg ultrasound), but I am just as willing to trust Dr. M as I am my PCP, seeing as how Dr. M is board certified in hematology.

Speaking of ovaries, Dr. M did say that in two major studies, a certain subset of women who were pre-menopausal, but opted to have their ovaries either removed or medically shut down, fared better than pre-menopausal women on tamoxifen. However, he didn't seem nearly as anxious to kill my ovaries as Dr. U. He also asked if we were done having kids, and when we said yes, he asked whether we were SURE, because that was an important consideration. I find it interesting he is the first doctor to bring this up. I never really considered the importance of doctors discussing this with me, because I knew that I was done having kids, plus, I am 40... which is young to have breast cancer but old to be having kids. So that was our discussion about anti-hormone therapy.

Dr. M said we didn't need to discuss targeted therapy, because for breast cancer this would mean Herceptin for a HER2 positive tumor, but my tumor is HER2 negative.

Of course, chemotherapy is the big question mark, and obviously depends on the oncotype (more on this below).

4. What is the prognosis?

Very generally speaking, there is about an 80% chance that in 10 years I'll be alive and cancer-free, assuming, of course, that nothing else kills me (like this damn cough). The chance of recurrence is around 20%, and radiation will reduce that by around 50%, down to about 10%. The weird thing is that 80% sounds very high, but so does 20%. As I tell my class when we do genetics problems, a 25% chance of something happening sounds a lot higher when it is your child and a deadly disease you are talking about. I guess the same goes for when it is you and it is breast cancer.

Dr. M explained the stats by saying, 'There is an 80% chance that all of the time you spend with me and that everything we do will be an unnecessary waste of time.' LOL. He compared it to a measles vaccination, asking me if I had been vaccinated against the measles. I said yes, and he asked if the vaccination had worked. I replied that so far it seemed to have worked, seeing as how I've never had measles. Then he said, 'Either the vaccine worked, or you've never been exposed to the measles, and the vaccine was just a waste of time.' He then went on to say that the whole basis behind the anti-vaxxer movement was risk vs. chance of exposure: some parents don't want to subject their kids to potential toxins to protect them against something they have very little chance of being exposed to. Then he eyed us questioningly and said, 'Perhaps that's you...?' I shook my head vigorously and assured him that wasn't us. Then he replied, with relief in his voice, 'Okay, just checking! We are in State With A Lot Of Crunchy Types, after all.' The point is that with radiation, it's likely we could bring the odds of no recurrence up to 90%, which is significant. The question is what, if anything, we want to do with that final 10%.

Dr. M had his MA check on the the oncotype results. Apparently the lab had just received the sample and said the results would likely be available by Friday, June 5th. However, he explained in general terms that the results would be numerical, which I knew, thanks to my new favorite web site breastcancer.org. A low-risk score is under 18, whereas a high-risk score is over 32. He repeated what Dr. L had said, that it was the in-between part that is hard, because there are no data to guide treatment decisions in this range. It's literally a crap shoot; in this range, things have to be decided based on gut feelings, and that is not easy. Then he added jokingly, 'With my luck, you'll probably come out in between.' LOL. His luck? What about my luck? According to my orthopedist, there is a 1% chance of developing DVT post hip arthroscopy, yet I managed! Though admittedly, I'd be much happier with an in-between score than a high score regardless of how difficult the ambiguity might be.

Dr. M did go on to say that although the cancer did not appear to be a super aggressive type, we had to be somewhat careful. He said that there was a big and statistically relevant difference between pre-menopausal vs. post-menopausal cancers. They behave differently. Pre-menopausal cancer is more aggressive, for reasons that are not well understood. Not only is the cancer more likely to recur, but it is also more likely to metastasize, meaning there is a risk it won't come back in my breast, but rather, in my uterus or bones or liver. So yearly mammograms (which I swear I will do from now on) won't necessarily cut it. For cancer at 40, you should add one degree of severity. This was actually sort of sobering news, so I didn't ask for more specifics. Come to think of it, Dr. M was sort of more gloom and doom than Dr. U, but somehow, despite the fact that he did not sugar coat anything, he managed to not make it sound awful. At least, I didn't leave feeling like I wanted to slit my wrists (though I sort of do now, haha).

Finally, I asked him what his thoughts were on working while receiving chemo and/or radiation therapy, simply because the nature of my job would require me to give a significant amount of notice (not from a legal standpoint, but from a conscientious professional standpoint). He said it really depended; if you break rocks for a living, it's going to be harder than if you sit at a desk all day. He asked what I did, then added, 'I mean, I know you teach, but what is your day like?' I said when I wasn't teaching, I was usually sitting at my desk. He asked me how many courses I taught per semester, and when I told him four, his jaw dropped. This made me like him. Only people who have actually taught a college course before get that four courses is a lot. Yes, I have flexibility, but it's not like I sit around all day twiddling my thumbs. Apparently he taught a college course one time, and said it was a lot of work - 'too much for me.' LOL. Anyway, he said it really depended, and he couldn't make that call, but he always supported his patients' decisions - if they needed documentation for medical leave or whatever, he would provide it. He also said that the drug he had in mind for chemo, if I did chemo, would make my hair fall out (boo :( ) but was not as brutal as other drugs in terms of side effects like fatigue and nausea. It would hypothetically be possible to work through it, if I wanted to/needed to. However, I've pretty much decided that if I have to do chemo, I am not going to subject myself to the toxicity of my work environment - with my super stressful colleagues/students and hundreds of sick people all around me - while I am already having to go through hell. It's bad enough I have a permanent limp, and now I'm supposed to teach with no hair? WTF? LOL. Radiation is different, however, and I have read mixed things about working through radiation therapy. While I do have a strong desire for things to stay as normal as possible, and not let cancer take over my life, I also need to be realistic about the fact that this is going to take a toll on me, especially considering my ridiculously low stress threshold.

The whole appointment took about an hour from start to finish, including a quick physical exam. Dr. M sort of made me laugh by asking me if it was okay if he checked my breasts - as if I am going to see a doctor for breast cancer that I won't allow to see or touch my breasts. As we were leaving, he asked if I wanted something for my cough, and I said YES!!! so he gave me a prescription for the heavy-duty cough medicine that knocks you out, so I'm hopeful I might be able to get some sleep tonight. The people at the pharmacy probably thought I was going way overboard seeing an oncologist for a cough. LOL.

All in all, it was a good appointment, though not highly informative, but at least that was expected. I left with a much better impression of Dr. M than Dr. U, so that is a relief. It's hard to know what to expect from an oncologist; like so much of this experience, you only know when you like or don't like something once you've encountered it. Do you want someone to smile when they deliver bad news, or act all gloomy, or show no emotion at all? It's hard to say. You just know it's right when it is right. And so far, it feels right.

What's in a Name?

The other day, I told my friend that I was going to see Dr. M at ABC Cancer Center, and she replied by frowning, and saying, 'I don't like that name.' Assuming she meant Dr. M's name, I inquired, 'Huh?' It's true - Dr. M does have one of those names where either name could be the first OR last name, so it's slightly confusing the first time - and especially when your husband is the one who makes the appointment, and then can't remember the name of the doctor, and you are madly trying to Google him to look up his credentials. LOL. However, then my friend replied, 'ABC Cancer Center sounds way too cheerful. Cancer centers should not sound that cheerful.'

I had never really thought of it that way. ABC Cancer Center never struck me as overly cheerful; in fact, it seems pretty standard for where we live. Like... if we lived in a state with beaches, it would be something like 'Beach View Cancer Center.' Which, I guess if you think about it, is sort of overly cheerful. I can just see it: Relax to the sounds of the ocean during chemo infusion. Ahhhh, that makes everything okay. At the same time, it's not as bad as something like 'ABC Yacht and Cancer Club' or 'ABC Cancer Center and Mortuary.' Haha. It got me to thinking... I know there is a lot of thought that goes into naming any business, but I bet naming cancer centers is pretty tricky. You don't want to sound overly cheerful or overly morose or overly spiritual or overly pagan or overly anything. Ever since our conversation, my mind has been going non-stop trying to think of what /I/ would name a cancer center if I, like, won the lottery and could start a cancer center. (As my dad explained to me when I was a kid, there are basically two ways you can get something named after you: either you die an early and tragic death, or you donate an assload of money. The latter seems much more appealing.) But even the Waning Moon Cancer Center has a somewhat morbid sound to it. 

At any rate, I am going to see Dr. M at the ABC Cancer Center tomorrow. (Maybe he can do something about this god damn cough, which I swear is a greater life threat to me than cancer at this point.) I mentioned that Dr. L had suggested waiting until I had my oncotype results to start seeing oncologists; however, Dr. M is going on vacation the week after next, and surgery #2 is scheduled for the week after that. According to my secretary ( = my husband, in case you are new here), he called Dr. L to ask her what to do, and she said to go ahead with the appointment tomorrow, and if we were happy with Dr. M, we could likely communicate by phone with him before surgery #2. All we really need to know from the oncologist prior to the surgery is chemo port or no chemo port, and since I'm reeaaaaally praying to all the powers that be that I do not need chemo, I'm not that worried about it. But then again, I'm not that worried about it in the same way that I was not that worried about my mammogram a little over a month ago, and look how that turned out. 

Reality Check Cancer Center. Maybe that's a good name. Leave your dreams and your future plans at the door. You can pick them up on the way out, if you make it. 

Post-Op Appointment

I had my post-op appointment with Dr. L today, and she was amazing, which allayed my fears that she was going to turn into my orthopedist (i.e., super nice but not so super competent). I had a list of questions that I've been jotting down over the last 10 days, but fortunately the regular course of the conversation answered all of them for me, without me having to pull out my notebook and go through the items point-by-point (though I did check at the end, just to make sure). It was a very useful and information-packed 30 minutes, so without further ado, here are the highlights:

• The pain and numbness I'm still having is normal, and should resolve within a few weeks. I've heard that one before, lol, but I am encouraged by the fact that it has gotten significantly better within the past few days. Dr. L said there is no excessive swelling, and that I need to stretch my arm ( = lifting it above my head). This will actually help the pain. I haven't been doing this because it hurts to do it, but apparently this is one of those suck up the pain to make it get better type of deals.
• She also listened to my lungs for me, because I was coughing so much, haha. Apparently they are fine, and this horrid cough is just the usual crud that causes horrid coughs. 
• She went over the pathology report with us. As it turns out, the pathologist went back and re-did a few slides after the initial report, and one of the margins is actually positive for ductal carcinoma in situ. This isn't good, but it's also not a catastrophe since it is 'just' DCIS ( = not invasive... yet), and she had already told me that she wanted to go back in anyway. It just worries me a little that the DCIS is so extensive, and that it really didn't show up on the mammogram, which in my paranoid mind has me thinking it could be all over the place. 
• I asked how she was going to know how much tissue to take out the second time around. She said it was a good question, and admitted that you can't really know for sure. Most people want to err on the side of too much vs. too little, but there is also a certain point at which you might as well just have a mastectomy. So... 
• She was very reassuring that there is a very good prognosis for lumpectomy + radiation, just as good as for a mastectomy. 
• Then we had an interesting conversation about radiation. I've never really understood, on a molecular level, how cancer can be caused and treated by the same thing; how one can receive radiation to kill cancerous cells without causing cancer in healthy cells. And I still don't really understand. Dr. L did say that previous radiation treatments ultimately ended up causing cancer in many patients 10-20 years later, The worst thing is 'a little' radiation, but that 'therapeutic doses' of radiation that are now given are very effective. 
• As far as the timing for surgery #2 goes, she said she would prefer to wait not only for the results of the oncotype, but also until we had met with and decided on an oncologist, and had decided on a definitive plan of action with an oncologist's input. 
• My husband actually arranged three appointments with oncologists next week: one on Monday, one on Tuesday, and one on Wednesday. The one on Monday is with a different oncologist in town, Dr. M. (Unfortunately, there are only two cancer centers in town, so he is sort of the end of the line for in-town providers.) The one on Tuesday is with Dr. U, and I had tentatively planned to cancel that one if I liked Dr. M better than Dr. U. The one on Wednesday is up at University Hospital. 
• However, Dr. L suggested waiting until the results of the oncotype were in because the oncologist would want them before making a definitive recommendation. So, those appointments will need to be rescheduled. Thank goodness I have a personal secretary (i.e., my husband) and I have the summer off, more or less.
• Although all signs point to NOT having to do chemo, it's not a done deal. She said the results of the oncotype change the suggested treatment 50% of the time  - though usually for the better. She said there are some types of cancer for which chemo will actually do absolutely nothing as far as recurrence, and there are some types of cancer for which chemo will reduce the risk of recurrence significantly. The tricky part is the middle ground, and weighing the hellishness of chemo versus the potential benefits in these 'intermediate' cases is when you need a really good oncologist.
• She said there was another test, MammaPrint, that also assesses the risk of recurrence, and some oncologists prefer to use it over the oncotype dx, because it comes back as either yes (do chemo) or no (don't do chemo), and some oncologists are uncomfortable with ambiguity. However, I'm more uncomfortable with an oncologist who is uncomfortable with ambiguity than I am with ambiguity myself. I understand statistics, and the fact that most things aren't black and white. 
• As if she read my mind, Dr. L said she was sure I'd be fine in understanding the numbers, because 'You are smart, and understand numbers' (LOL, I'm not sure how she came to that conclusion after one meeting; hopefully it's not just because I am Asian), but that you had to be careful in interpreting/understanding the results of the oncotype. For example, the results of the oncotype might suggest that chemotherapy will reduce the risk of recurrence by 20%. That sounds significant, but if the risk of recurrence is only 10% to begin with, that only takes you from 10% to 8%. Of course, a reduction in risk is a reduction in risk, but there are side effects to chemo, and if the risk of recurrence is small to begin with, you should consider that. 
• Because I'm a science nerd, and Dr. L thinks I am Smart, haha, I asked her what exactly the oncotype was testing - receptors, mutations, or... ? She said the oncotype dx analyzed 21 different genes with various roles in cancer, and was actually based on a really neat prospective/retrospective study - one in which old tumors were analyzed after the fact. And because they were analyzed 10-20 years later, the researchers knew the outcome of the people from whom the tumors were removed, and could therefore make very powerful correlations between the tumor characteristics and the outcome. So basically it is the best tool we have nowadays. 
• It was really cool to be able to have a 'high level' conversation like this with a doctor. I understand that medicine is part art and part science, the same way that teaching science is part art and part science (and, at my level, more art than science). However, I believe that cancer is a malady that will be cured by biochemistry and molecular biology, more than art, and by doctors who understand science. The most important thing to me in a provider for cancer is that they can talk science, and statistics, with me. 
• As we have been shopping around for oncologists, I decided that I would ask Dr. L for her personal recommendation for an oncologist. I know this gets into sticky territory, as some doctors won't give definitive recommendations, especially for doctors outside of their own practice. But you figure it's worth asking, right? My PCP told me that if it were his wife with breast cancer, he would make sure she saw Dr. L, and since his recommendation turned out to be fabulous, I decided I wanted Dr. L's recommendation.
• Fortunately, at some point, our conversation had a very neat segue into If it were you, who would you choose as your oncologist? territory. Dr. L was actually very open about who she would choose, and highly recommended Dr. M, which made me feel very good. I had been a little concerned because the other doctor who came highly recommended (in the same practice as Dr. M) was booked through June, so I sort of had this feeling that Dr. M was second best. Or third best, or fourth best... (The problem with awesome doctors is that they are usually booked, so you have to wonder about one with open availability.) However, Dr. L said Dr. M was very compassionate, smart, and science and statistics-oriented, and felt he would be a really good fit for us. She actually semi recommended him over Dr. Who Is Booked Through June, which was sort of a relief. (She didn't exactly say this, but she implied it.) She said Dr. Who Is Booked Through June was more on the aggressive side than Dr. M. I mean, aggressive is okay, but aggressive without evidence that aggressive is helpful is another thing, and Dr. L seemed to understand that while I definitely want to be aggressive, I don't want to be aggressive just for the sake of being aggressive (i.e., I'm not one of the Give me chemo no matter what type of people, and probably not even Give me chemo if it reduces my chance of recurrence from 10% to 8% type of people). So hopefully he is just less popular because he is a man who deals with breast cancer, which is sort of like a male OB/GYN. 
• However, Dr. L also said no matter what, it was a good idea to go to University Hospital for a consultation, and was happy we had set that appointment up. At one point, she said she was glad that we seemed to have the 'med onc' part of this under control. 
• On a side note, I stalked Dr. M on Internet and he is an MD/PhD, with degrees from an Ivy League school, which as an academic immediately made me feel good. Nonetheless, it makes me feel much better that he has an endorsement from the medical community as well as obviously being 'smart.' 
• Interestingly, as we talked a bit more, I asked Dr. L what chemotherapy might involve - i.e., what drugs - just so I can Google them and prepare myself, ya know? She said chemo was usually pretty standard and there were basically three different drugs, though given my case, Dr. M might opt out of the one with the most horrid side effects. I'm not sure what the 'horrid' side effects are, but I decided that was a conversation I should have with the oncologist vs. Dr. L. 
• Call me vain, but I really don't want to lose my hair. To me, that's the most horrid side effect of chemo, even more than constant nausea - throwing up, diarrhea, whatever. I feel like I can deal with the other side effects, but I really don't want my hair to fall out. There, I said it. 
• Even though Dr. L (UNFORTUNATELY) won't be in charge of my long-term care, she did discuss options with me, including tamoxifen and shut-down of my ovaries - whether it be chemical vs. surgical. 
• She said that she felt most oncologists would be okay with me taking tamoxifen if I also stayed on blood thinners, given that a side effect of tamixofen is increased risk for blood clots.
• But, that might be 5-10 years, which is a long. freaking. time.
• I mentioned that I was fairly certain I didn't have a clotting disorder, and asked if it would be possible for me to have my blood clot re-evaluated. She said that unfortunately, regardless of prior history, the single best predictor for blood clot formation, was a previous blood clot. So basically I'll be high risk for blood clot formation for the. rest. of. my. freaking. life. (Have I cursed my orthopedist recently?) 
• Aside from tamoxifen, the other options for hormonal treatment (e.g., aromatase inhibtors) are for post-menopausal women. Apparently some women can't tolerate these, so Dr. L suggested that if I went that route, it would be better to test the medications before doing something permanent, like having my ovaries surgically removed. She also said that the ovaries can be shut down medically through a shot, which basically makes you go through menopause in, like, a few days, which is Not Fun. So basically being on tamoxifen and Xarelto for 10 years is pretty much the most appealing option at this point, which is pretty freaking depressing, though not a shock. I feel like I sort of already knew this, though it was different hearing it from Dr. L than from Dr. Gloom and Doom (Dr. U). 
• IF I do chemo, the order of events is surgery, chemo, then radiation. Radiation is a given. Pretty much. I mean, obviously no one can MAKE me do it, but basically I won't find a board certified doctor who will tell me it's not a good idea. 

The GOOD NEWS is: 

• Going on vacation is absolutely doable, according to Dr. L. I realize that vacation is small in the you are going to live vs. you are going to die scheme of things. However, I'm also a numbers person. If starting treatment at end of June/beginning of July vs. middle of July/end of July means a 0.001% or 0.01% or even 0.1% or 1% reduction in the chance of recurrence of my cancer, I'm all for the vacation. 
• However, Dr. L actually said that she didn't think there was much, if any, significance in when I started Part 2 of my treatment, as long as it was within three months post surgery #2. 
• I figured a person who deals with cancer patients might not have a lot of patience for patients (haha) who were trying to plan their life around vacations; however, she understood. My life has already been turned upside down, or at least sideways. Vacation is important. Maybe now more than ever. 
• She was willing to work with us as far as us still being able to take our vacation. Furthermore, she was willing to work with us as far as her own vacation plans went. 
• She said that she was going on vacation June 19th-30th, and given that we were hoping to leave June 27th, it was possible to aim for surgery #2 before she left. She was a little uncomfortable waiting until after we got back, theoretically on July 11th, and therefore agreed to 'make time' on June 17th for the 're-excision.' So June 17th it is. This should give us time to get the oncotype results and consult with an oncologist, and also give me enough recovery time to be able to travel on June 27th, even with a chemo port. 
• She said surgery #2 should not be nearly as bad as the first one, given that the lymph node biopsy is the worst part, and she won't do that the second time around. 

Overall, it was an action-packed appointment, with a lot of information. Most of it was not new, but somehow it was still a lot to take in. When I first got into the room, the MA had me change into a robe (I love that they have real, cloth robes that they heat up for you - none of the ridiculous, scratchy, paper robes!); however, I never actually sat up on the examining table, just because I didn't feel like it. And Dr. L never asked me to sit up on the table, she just sat down across from me and even did her physical exam while I was sitting there in the regular old chair. At one point during our conversation, she actually moved next to me and put her arm around me, though in retrospect I feel sort of bad because I'm pretty sure I just sat there like a stone statue, which is nothing personal, just my normal reaction to people touching me. LOL. However, before she left, I did thank her profusely for calling me on Friday night, so hopefully she knows I don't hate her for having to be the bearer of bad news. 

PET Scan + Genetic Counseling

Wow, things are moving so quickly, and I am so wrapped up in my minute-by-minute survival, trying to make sure that I'm in the right place at the right time and my husband is in the right place at the right time, that I apparently forgot to share some big details. (I also tend to lose track of what I've shared with whom and who knows what and how.) I alluded to it in my last post, but apparently never actually mentioned that I called first thing on Monday morning to schedule surgery. I now have a lumpectomy scheduled for next Monday, May 18th, and although everything is happening so fast that it is slightly overwhelming, I'm also glad it is happening so fast. As Christine commented in my last post, 'Get that shit OUT!' My sentiments exactly. I think no matter what - i.e., regardless of the results of genetic testing (see details below) - I would proceed with the lumpectomy, even if something more major is in my future. The chances of me having one of the high-risk mutations like BRCA1 or BRCA2 are low, but even if I do, and even if I decided to have a double mastectomy, that's something I would need time to wrap my mind around. In the meantime, I am anxious to get what we can get out OUT. So far, all signs are pointing to a pretty straight-forward surgery, pending the news from the PET scan I had this morning.

Highlights of the day:

• Dr. L called me this morning to let me know that she had looked at my MRI and did not see anything remarkable, other than what we already knew. She was waiting for official results from the radiologist, but thought the MRI looked good.
• She also wanted to discuss the management of my DVT, and said that I would need to stop taking Xarelto on Thursday, and switch to Lovenox, which is the drug you have to inject into your stomach. UGH!! (Now that I think about it, I'm curious why Lovenox is okay during surgery, while Xarelto is not.) Needless to say, I'm not really happy about this, but... I'll survive (while cursing my orthopedist 1000x times over).
• I asked about the possibility of not needing to be on an anticoagulant anymore, given that my last ultrasound looked pretty good. So Dr. L pulled up the ultrasound results from February and read them aloud to me, and they actually didn't sound that good, lol. I was about to say, 'Okay, never mind,' when she said, 'Yup, sorry, not a good idea.' (Did I mention that I am cursing my orthopedist 1000x over?) (Also, the fact that he told me it was okay to stop taking Xarelto in October, and now a second doctor has told me it's not safe for me to stop SEVEN MONTHS LATER, makes me want to write a formal letter and complain about him. Seriously! But fortunately for him, I don't have the time.)
• After our conversation this morning, Dr. L sent me two e-mails - one with the official results from the MRI and one with more test results from my biopsy, showing that the tumor is negative for HER2, which is a good thing, since HER2 positive tumors tend to be more aggressive and are more likely to come back. The only potentially concerning thing about the MRI results - and I sort of knew this already - is that the tumor is right up against my chest wall. According to the report: This lesion abuts but does not definitely invade the left pectoral muscle in this region. So it doesn't necessarily spread into the muscle, but it also doesn't necessarily NOT spread into the muscle, either. And of course, there are still the PET scan results to shed more light on this. So we wait.
• Speaking of the PET scan, it was uneventful. It wasn't actually too bad compared to some of the other things I've experienced in the past month, except that it took two hours. First, I got injected with radioactive glucose and had to sit for an hour while the glucose spread. I got a lot of grading done, though, so it actually worked out well. Then the scan itself took about 45 minutes, but it was very peaceful and quiet compared to an MRI, and I was able to take a power nap.
• After the PET scan, I rushed home to relieve my husband so he could get to a lunch meeting. Both kids were home sick today (when it rains, it pours) although thankfully they both seemed fine this evening. I leaned heavily upon the electronic babysitter and let them watch movies for several hours straight, while I had a grading marathon. I got my first set of exams graded, which was a relief. One down, two to go.
• In the afternoon, my husband took my daughter to the orthodontist, my mom came to watch my son, and I went to see a genetic counselor, Melanie. I feel sort of bad because I've been super crabby with this woman, mostly just because I'm super crabby in general these days. The appointment didn't start off well when she asked me what I hoped to get out of it, and I just stared at her. Seriously, I had no idea. And I was too tired to even make something up, so I said in a fairly pissy voice that I had no clue why I was even there. Poor woman.
• However, I think I redeemed myself. Once we got going, the meeting was actually good and fairly informative. Melanie really didn't tell me much that I didn't know, but it was interesting to talk about genetics in a clinical rather than academic context. If nothing else, it will give me some good material for the cancer lecture I give my class. LOL.
• We also had a rather deep discussion about the usefulness, or lack thereof, of genetic testing in the absence of a family history. In the end, I agreed to do a full genetic analysis, which means that I will be tested for 29 different mutations known to be associated with breast and ovarian cancer. These range from BRCA1 and BRCA2 to fairly insignificant mutations that increase the risk of cancer, like, 1%. However, Melanie explained that having the results might be useful in the future, as more discoveries were made about certain genes. She also said that it might not be as easy to get tested in the future in terms of insurance coverage. The way it works now is that if you qualify to be tested for the 'high risk' genes, you can basically tack on the full analysis for no additional charge. Insurance won't actually cover the full analysis, but the labs don't charge you for it. So... why not? I guess? I also signed a form allowing my results to be used for research purposes, so hopefully that makes the $5,000 worth of tests that the lab does free of charge worth it. (You have to figure there has to be something in it for them.)
• Out of curiosity, I asked Melanie what the criteria were for insurance to cover genetic testing. She said that for breast cancer, anyone who is 40 or younger automatically qualifies. Anyone who is 50 or younger and had/has an immediate family member with breast cancer also qualifies. Then she said there were other ways to qualify as well; for example, if you have a tumor that is negative for estrogen sensitivity, progesterone sensitivity, and HER2, that qualifies you. All in all, it was a fairly interesting conversation, and hopefully I left her with a better impression than I'm sure she began with. I'm sure she was DREADING this meeting after our initial conversations on the phone.

I think that about covers it. I hope I didn't miss any important points, but I can't make any guarantees. I'm in full-fledged survival mode. Thank you all for your comments, e-mails, texts, etc., and thank you, C, for dinner tonight! I'm on a $12/month cell phone plan because I normally don't use my cell phone very much, but I've been getting notifications all night that my account has 'insufficient funds.' I need to figure out how to upgrade my plan now that my doctor and all these medical people have been calling me 10x a day, and I've been getting tons of texts. Maybe upgrading my plan and getting a smart phone will be 'surviving cancer' treat to myself.

Cancer, DVT, and Hip Pain (in that order)

I saw my primary care doctor today; I'm not exactly sure why. Ever since his PA left, he has been overwhelmed, and it has been ridiculously hard to get an appointment. I set up this appointment several weeks ago, I'm sure as a follow up to one test or another. (I lose track.) I was going to cancel the appointment, but then my husband suggested that I keep it, so I did, more for him than for me. He picked me up at the university so I didn't have to give up my parking spot, and when we went into the doctor's office, he signed in as if he were the one being seen. LOL.

The appointment was fine. Basically it was a lot of hand-holding, and a lot of 'this is what you should expect,' which was actually good, because this is new territory for both of us. Dr. A apologized for not having more information, and said that he understood that waiting was the worst part. However, all he had was the preliminary pathology report stating that I had an invasive ductal carcinoma, so we would have to wait a bit more for specific information. He did say that no matter what, the priority at this point was having surgery to have the tumor removed, and that future treatment would depend upon what was found during surgery, as well as the more specific results from pathology. There are some more specific things I could discuss, but... I'm too tired. I love being surrounded by a bunch of people who know a bunch of stuff about cancer, but it is also tiring. While most normal people ask about the stage of cancer, my colleagues are curious if I have a TNM stage or HER2 results or... other things I haven't heard of before. It's enough to make my head explode.

Toward the end of the visit, Dr. A noted that my husband looked worse than I did. My husband shrugged and mentioned that 'it comes and goes.' Since I didn't want his male ego to be damaged, I offered that the anxiety seemed to bounce back and forth between us (which is true). Finally, Dr. A asked how the rest of my body was doing. I gave him the abbreviated version of my hip saga, then we talked briefly about my DVT. As I was talking, he pointed to his chest, then his leg, then his hip, and said, 'I know your hips are affecting you a lot, but the priority is the cancer first, then the DVT, and then the hips.' I know this is true. My hips will not kill me, but DVT and cancer definitely can. The irony is that at any given moment, it is my hips that give me the most grief, but I can't think about them right now. Dr. A did say we would have to talk about alternatives to Xarelto once I had the surgery scheduled. He concluded by asking if I need prescriptions for anything and I said I needed a refill for Xarelto. Then is asked me if I needed anything for anxiety. LOL. I joked that I had plenty of wine. Later, when I mentioned to my colleague that it would terrible if I could not drink wine while doing chemo, she reminded me that I could always smoke pot, haha. Oh the awesomeness of living in a place with no money to fix roads, but where you can go to the local dispensary and buy pot - pot candies, pot brownies, pot soap, you name it.

All in all, I am feeling pretty positive right now. Seeing my doctor and talking to a few colleagues and friends about the ordeal has helped me so much, which is actually surprising, but in a good way. The colleague who is covering my classes tomorrow - the one with whom I have a questionable relationship - has been amazing. I hate to say it, but it's true. The thing is I'm not sure I would have even told her except that on Monday, I had a little extra time between my classes, so I came up to my office and checked my e-mail and discovered that I had an appointment with the surgeon at 9:00 AM on Wednesday, which is pretty much the worst time ever for me in terms of my work obligations. When I told my second class that I would unfortunately not be able to make it to class on Wednesday, they were really upset (which I get, seeing as how it is the last class of the semester and a review day, but still... college kids being upset about a class being canceled? WTF?). So I told them I would try to get a colleague to cover for me, and while they were watching a video, I ran upstairs, and this particular colleague happened to be in her office, so I unloaded on her. I knew I only had 10 minutes until the video ended, so it all just came out. In the end, it was a good thing.

Anyway. I have been investigating the surgeon with whom I am meeting tomorrow and have so far turned up nothing but good information, so I hope that she is as awesome as she appears to be in the virtual world. If I hate her, I'm not sure what I will do. At this point, I'm inclined to take a kitchen knife and just saw myself open. However, my recent experience also makes me understand the importance of a good surgeon, especially with something as weighty as this. But I guess all I can do is wait and see. And think lots of good thoughts.

A New Journey

This is not an easy update to write, but I've decided to write it because I realize that I am about to embark on a new type of journey. I started writing here partly to fend off boredom and to give myself something to do while recovering from hip surgery, but also because I've found that reading blogs provides an insight into medical conditions that even the most informational of web sites just can't capture.

So I've decided to continue writing here, to share a different journey, which started today when my doctor called to let me know that he had the pathology report from the biopsy I had on Wednesday. It took me a little off guard because I was not expecting to hear anything before the weekend, and also because I did not recognize the phone number from which he called me. It was neither the main office number (which I have memorized) nor his personal cell (which is programmed into my cell). After I answered my cell phone and he said, 'It's Dr. A,' I immediately replied, 'Do you have bad news for me?' Pause. 'Well,' he said, 'I have some bad news and some good news.' Considering the circumstances, any bad news is fairly bad, so I knew right then and there I wasn't going to be happy with what he told me.

Apparently I have a ductal carcinoma. That is the bad news. The good news is that it is 'well differentiated,' which basically means it is the least aggressive type of carcinoma. I've needed some time to process this information, so my consultation time with Dr. Google has been minimal, but I do know this much: this is the most common type of breast cancer and it is often detected only by mammograms, which actually makes me cringe a bit, because my tumor is fairly large by now, so I wonder how long it has been growing. I curse my hips and DVT for causing me to neglect the rest of my well-being for the past two years.

Fortunately, I was mentally prepared for the bad news. As much as I worry about being a hypochondriac, whenever I've felt like something is wrong with me, there has been something wrong with me. The news wasn't better than I expected, but it wasn't worse, either. After I found the lump, I consulted Dr. Google about the possibility of a lump being non-cancerous. Statistically speaking, there was a good possibility of it just being a cyst, although my self-diagnosis did not lead me to believe that my lump fit the criteria for a cyst. However, knowing that I cannot be completely objective with myself, I took on a wait and see attitude. But, I was not surprised when the mammogram revealed that it was, in fact, a solid mass (aka tumor). After knowing I had a tumor, I consulted Dr. Google about the possibility of the tumor being benign, and it did not seem that the odds were in my favor. For one, benign tumors are much more common in younger women - women in their teens and 20s and sometimes 30s. And again, my tumor did not seem to match the description of any benign tumor I could find a description of.

If there is any silver lining in this, it is perhaps that I now have some confidence in my diagnostic abilities, and hope that I can put them to use someday by living long enough to realize my goal of becoming a healthcare provider.

In my heart, I feel like everything is going to be okay. It HAS to be okay. It is still a harrowing journey to be contemplating, however. At this early point in time, I'm mostly feeling annoyed that the awesome summer I had planned out and was so looking forward to will not be happening the way I had envisioned it. But I realize that the farther along I get in this journey, that will seem like such a ridiculous thing that I'll be embarrassed I even wrote it. But that's what I like about reading blogs about other people's experiences - the human aspect of all of this, ridiculous thoughts and all. So I will try to be very real here.

My husband is handling all of this in about the same way I am, with occasional pep-talks thrown in. 'We are going to beat this!' 'This is going to be okay!' I want to believe this with all my heart and know that so much of this ordeal will be dictated by my attitude, but I'm just not quite there yet in my mind. I need some time. However, I had a glimmer of hope today that that positive attitude is in me somewhere. I have to do clinical hours all day tomorrow for my EMT certification (which will actually be a nice distraction), and on Sunday, my husband had planned a guitar-playing date with a friend. He mentioned, though, that he had told his friend we had to see how we were feeling on Sunday, which was his way of asking permission to proceed with the date. I assured him it was fine with me, then I put on my best British accent, made a face at him, and said, 'I'm not dead yet!' He proceeded to burst out laughing and then said, 'See! This is why I know you are going to be okay!'

http://seizethelatte.com/2013/06/25/im-not-dead-yet/

I hope he is right, because I am very much in love with life, and particularly my life. It is such a good life, and I'd be honored to keep living it for many years to come.

And so we start a new chapter; thanks for joining me in my journey.