PMPS

Yesterday while my husband and I were up at University Hospital, my parents took care of the kids, which is, I think, part of the everyone-turning-over-a-new-leaf plan. After we got home, my mom brought the kids back and I tried to give her as much detail as I could about the consultation - again, part of the everyone-turning-over-a-new-leaf plan. Apparently all of the ovary stuff was news to my mom because we had previously never gotten past her hangup with radiation. Egad. After I filled her in, she mentioned that she had just read an article in the New York Times, and of course I braced myself. However, she went on to say that the article mentioned that many women were completely unprepared for the pain involved in breast surgery, and that even the surgeons themselves didn't realize how much pain it caused.

After she left, I looked up the article, When Pain Persists After Breast Cancer Surgery, and it is actually very interesting considering my post from a few days ago, in which I discussed how unprepared I was for how painful the lumpectomy was going to be. The article mainly focuses on postmastectomy pain syndrome (PMPS), which is actually very common, and yet, in many cases, is not even discussed ahead of time. According to the article: 'Not all breast and reconstructive surgeons are aware of the extent of PMPS, which may explain why many do not mention it to their patients as a possible complication of surgery.' Additionally: '... it can also affect women who have had a lumpectomy, in which only the tumor and a small amount of surrounding tissue are removed. A study published in 2012 in the journal Breast indicated that women who had had axillary lymph node dissection — removal of some or all of the lymph nodes adjacent to the cancerous breast — were at particular risk.'

So I'm not crazy. Okay, so maybe I am, LOL, but at least I know this pain is very real. I am not trying to freak anyone out about lumpectomy, I just think it would have been helpful to have a better idea of what to expect. Dr. L did say that the surgery would 'irritate' the nerves and cause pain, but I really don't feel like 'nerve irritation' quite captures it. For the past two weeks, I've been wondering WTF is wrong with me and figuring I must be the Wimpiest Woman Ever, because I still can't easily lift my arm over my head. But apparently this is actually pretty common. Not that that's a good thing, because I would not wish this pain on anyone (okay, so maybe I can think of a few people, haha), but it is comforting to know that not only is the pain normal, but that being completely unprepared for the pain is also normal.

I've been reading the message board on breastcancer.org, and I am surprised by how many women had mastectomies for early-stage, node-negative cancer, when I never seriously considered a mastectomy. This wasn't even really based on anything emotional about my breasts, it just seemed like a mastectomy was sort of excessive for a little old lump. And my surgeon presented lumpectomy to me as the most logical choice. Then again, this is coming from someone who took 15 years to have torn cartilage in her hip fixed, so I'm probably more surgery-averse than average. And, of course, maybe I made a naive choice, considering I now need another surgery, after which, like, a third of my breast will be gone anyway. Regardless, I find myself praying for clean margins with this next surgery, because I know if they are not, the next logical step is a mastectomy. And that really doesn't sound fun.

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.

News Round-Up

I am going up to University Hospital tomorrow for a consultation. I don't actually have any idea what to expect, but apparently they have this consultation thing down to an art, so... we shall see.

Before I have another round of news to report, I thought I would tie up some loose ends. In no particular order:

• Everything is good with my parents. I think it was actually a good thing they went away immediately after our little confrontation, out of e-mail and phone range. It gave me some time to cool off and collect my thoughts. In the end, I decided that I don't want to be mad. I don't have the energy to be mad. I did write an e-mail to them explaining a lot of what I wrote about here but then concluded with I'm over it. Let's start over. It's just easier this way. 
• I am not sure if I wrote about this, but Dr. M was completely a-okay with us going on vacation, so... we are! 
• I'm a little nervous about traveling just 10 days post-surgery, but hopefully I'll be feeling pretty good by then. I mean, I'm not nervous about the actual vacation, during which I plan to do pretty much nothing (nothing, nothing, nothing!). I'm worried about the traveling itself, which is always a pain in the ass, surgery or no surgery. Hauling a 100-pound car seat through an airport is quite possibly one of my Least Favorite Things Ever.  
• After Dr. U had told us to cancel our vacation plans, I asked around to see if anyone wanted to bail us out and rent the condo we had already paid for. A few friends actually offered to take me up on it, which was very helpful. Neither could do both weeks, but each offered to take one week. It was bad enough thinking about trading beach radiation therapy for a much less appealing type of radiation therapy, but thinking of losing all that money on top of it was super depressing. 
• I think we could have gotten most of the money back - if they could re-rent the condo, but in order to do that we would have had to decide very early to cancel, and my husband seemed to want to hold out until the bitter end (which turned out to be not so bitter :)). It is our 15th anniversary after all! I think he had a secret plan to shop around for an oncologist who did not feel like two extra weeks would matter. And to be honest, Dr. U probably would have been okay with it once surgery #2 came into the picture, because she said I should not start radiation until I had recovered from surgery, and that would be at least 2-3 weeks, maybe even a month.
• Until we saw Dr. M, we were being sort of wishy-washy about whether or not we were going to make it, and meanwhile one of my friends really needed to know whether or not they should get plane tickets. I told her to just plan on going, and even if we were there, they could be there, too. So now it looks like we will all be there, and that's actually pretty cool. It will be a big post-surgery #2 party!
• My cough is FINALLY getting better. Seriously, that horrid thing lasted two solid weeks, and I still cough a little at night, enough to keep me from sleeping. 

And now... I need to get to bed. I have NOT been sleeping nearly enough, and to make matters worse, I can't remember the last time I actually fell asleep without some sort of drug, whether it be heavy duty cough medicine, Ambien, or alcohol. I do not necessarily suggest the latter, but sometimes you've got to do what you've got to do. That said, tonight's choice of drug is Ambien. I can't be hung over for an appointment at University Hospital, after all. :)

Post Lumpectomy Thoughts: Three Weeks After

It is weird how the fates work. I honestly had pretty much zero interest in breast cancer until I found out I had it. Breast cancer gets way too much attention, in my opinion. And so much of that is, of course, because, well duh. We live in a society obsessed with breasts. What better way to fuel the obsession than to pretend we are really worried about women who have this disease? Even before I had breast cancer - or at least before I knew it - I found a certain amount of disgust in watching NFL games, with everyone decked out in pink and wearing pink ribbons, interspersed with commercials with large-breasted women advertising I don't even know what (of course, that's the point, right?). Then again, I do enjoy a good football game, so, eh, whatever. I went to an all-female college where the prevailing attitude was that if you aren't angry about something, you aren't paying attention, which was fun in my 20s, but has faded in the years since. Call me lazy, but at a certain point, being angry takes too much energy.

As I educate myself on issues surrounding breast cancer, one interesting thing I've noticed is that people talk about mastectomies as if they are no big deal. Perhaps some of it is the Angelina Jolie effect, but I suspect that a lot of it has to do with the fact that breasts are somewhat superfluous. One can continue to live without breasts without having to make major lifestyle changes the way that someone who loses an arm or a leg or even large intestine has to make. There is also the option to have your breasts reconstructed, and apparently some surgeons are quite skilled at this these days. I read in my surgeon's biography that she is an expert at nipple-conserving mastectomies. I assume that's exactly what it sounds like, though I have to admit that I hope to never find out.

Ever since I found out I have breast cancer, a few people have suggested, with definite bravado, that having a prophylactic mastectomy is actually a sign of strength; it shows that you are secure enough with yourself to live without the very object or objects that make you a woman, and that your relationship with your partner is strong enough that you will not feel like any less of a woman. Or, if you don't have a partner, it shows that you are confident enough with your scintillating personality and beautiful looks that it will never affect your romantic life, and because you are so self-assured, you will never feel awkward bringing up the fact that you are missing a boob or boobs, or that you have a fake boob or boobs, to potential future partners.

I really don't want to get into personal choice here. Some women have mastectomies because the cancer has spread throughout their breast; some women have mastectomies because they have a mutation that puts them at high risk for breast cancer; some women have early stage breast cancer and opt for a mastectomy for X, Y, or Z reasons. It really doesn't matter. Every woman who opts for a mastectomy has her reasons, and every woman who opts not to have a mastectomy has her reasons, too. Sometimes those reasons have nothing to do with how much she loves her breasts, how secure she is with herself, or how strong her relationship with her partner is.

Which brings me to the point I want to make, three weeks post-lumpectomy. For just one minute (or at least until you finish reading this, so maybe 2-3 minutes depending on how fast you read), I challenge you to try to ignore the fact that this is breast cancer we are talking about, and just imagine cutting off a body part. Amputation. That's what a mastectomy is. It is a breast amputation. And an amputation is a big deal. I am not even talking about the social or even functional implications of an amputation; I am just talking about the surgical and medical implications.

And the reason I'm thinking of this is because I am three weeks post-lumpectomy, and I'm still feeling a lot of pain and discomfort. Perhaps it is my fault for not educating myself enough ahead of time, but I was fully unprepared for how much this was going to hurt, and for how gross my scars were going to be. (Seriously, it's a good thing I'm not a stripper, or a topless dancer, though I'm sure there is a niche for dancers with frankenboobs somewhere.) I think because so many people view mastectomies as no big deal, that lumpectomies are seen as even less of a big deal, and, after all, it is outpatient surgery, so how bad can it be?

Three weeks post-lumpectomy, here are some of my thoughts based on my experience:

• I felt really crappy for at least five days post-surgery. I had constipation followed by mad diarrhea. I also had no appetite. Maybe these things were just stress, but I have to assume that anyone who has cancer is going to be at least slightly stressed out, no? Any type of surgery causes physical and psychological stress on top of whatever stress is already there.
• I felt a lot of pain for at least 48 hours post-surgery. I could not move my arm without extreme pain. I took pain pills every 4 hours the day of surgery and the entire day afterward.
• Moving my arm hurt for a good 10 days after the surgery. I actually made a sling out of my graduation hood until a friend lent me a real sling from when her husband broke his elbow. 
• I have yet to regain feeling in a good portion of my breast; it is still numb. I have mixed feelings about the numbness. I've noticed over the past week an increase in my pain, which makes me think WTF? However, I then realize that the pain is because I'm regaining feeling. 
• It is still very difficult for me to raise my arm above my head. When I do this, I feel shooting pain all the way through my ribs, as if I've been kicked in the ribs. I still have to psych up to put my contacts in in the morning.
• Wearing a bra hurts because it rubs on my incisions, but not wearing a bra also hurts because, well, there are reasons people wear bras. 
• Admittedly, I've been a little lazy about rehabbing because I know I'm having another surgery and sort of feel like what is the point when I'm going to have to start over in 10 days? 

The point of this is not to be all woe is me, but to hopefully quash some misconceptions about this type of surgery. Regardless of how you feel about the necessity of breasts, the surgery itself has all of the effects of any surgery, all of the pain involved in making 1-2 inch incisions in flesh, and all of the pain involved whenever you remove an ice-scream scoop's worth of tissue from a body. It is not easy, and the recovery is longer than you might think. At any rate, it is definitely longer than I thought it would be. One of the things that sold me on Dr. M was that when I told him I had had the lumpectomy two weeks ago, he said, 'Okay, so you must still be really sore; I'll try to be gentle and not to hurt you.' Like, he got that I'm still hurting, a lot.

The first wave of bills for my trip into Cancerland has just started to come in, and according to my insurance, I did not have a lumpectomy, but a 'mastectomy, partial.' Based on my experience thus far with 'mastectomy, partial,' I can imagine that a 'mastectomy, total,' comes with double, triple, quadruple, whatever more pain than a simple 'mastectomy, partial.' Given that I was totally unprepared for the amount of pain involved in a lumpectomy, and especially the sentinel node biopsy, I just wonder if women are fully prepared for the pain of a mastectomy - both the immediate and possible long-term pain that seems to be overlooked while all the attention is given to the fact that you can live without your breasts.

Of course, deciding on a treatment route is very personal, and I do not want to question anyone's motives for choosing one route or another. I do feel, however, that because of the nature of breast cancer, too much attention has been given to the body part involved, and not the effects of the surgery itself. If I haven't articulated my views clearly, I think that Ann Silverman does an amazing job of this on her blog, and explains the reality of mastecomy much better than I can. If you are interested in this, please read this: http://www.butdoctorihatepink.com/2014/08/the-wrong-approach-to-breast-cancer.html.

The Grapevine

Since I wrote an entire post about the annoying things my mom does, I thought I should write about some of the useful things she does, which I will emphasize in my response to her e-mail, which is work in progress. One of the things my mom does very well is blab about me to other people. And I honestly don't mean that in a flippant way; I don't mind. I'm not a secretive person and don't really care what other people know about me (as evidence, refer to this blog lol); I'm just not a blabby type of person. And there's not really a way to casually work 'oh yeah and by the way I have breast cancer' into a casual conversation.

When I was first diagnosed, my mom immediately wanted to put me in contact with a few other women she knew who had had breast cancer, also at a young age, so I could hear about their experiences. I don't even know one of the women, and I only sort of know the other one, but not really. I mean, I get that this sort of thing can be useful (which is why I like to read blogs), but... it just seemed sort of weird. I might eventually come to point where this is something I want - for example, I might contact one of these women, who is also faculty at the university, to hear her thoughts on working through radiation therapy. But it wasn't something I wanted to do within 24 hours of finding out I had cancer.

Anyway, the one really useful thing my mom has done for me is to tell my brothers all my news. I don't have a super close relationship with my brothers, but I want them to know. So knowing that my mom is keeping them in the loop is actually a great comfort. And she did ask me if I wanted to tell them or if I wanted her to tell them, and I asked her to tell them. That has been very helpful. One point for Mom. :)

Along these same lines, I've only told a few colleagues at work - the two colleagues I am the closest to, one colleague who covered my classes for me when I was in a severe bind, one colleague who is sort of crazy and basically kind of trapped me into telling her why I looked sooooo tired all the time, and my Chair. I obviously told the Chair because I knew that this might affect my ability to work in the fall, and I felt like he needed to be aware of this as early as possible. The thing is that we are going to have a new Chair in the fall, so he asked me if I wanted to tell the new Chair or if I wanted him to, and I asked him to. Of course. LOL. I said it wasn't a secret, it just wasn't something I was going to be telling everyone about. And I try to be pretty open about the fact that this isn't a secret; in fact, I sort of want people to tell other people so that I don't have to explain why everyone should cut me some slack for being a bitch. (Okay, I'm a bitch anyway, so I probably don't deserve that, haha). But hopefully you know what I mean.

So, I had to go to work today because I'm on a hiring committee for a new faculty member. There are four other people on the committee, and I know that three of them know. The fourth person is close to one of the colleagues who covered my classes for me when I went to see Dr. L for the first time, so I just assumed she knew, too. However, apparently she doesn't know, and apparently no one else in the department other than the people I've told directly knows.

It came up because after the meeting I was sitting around chatting with two of my colleagues when the third one who knows came back and asked me to stop by her lab before I left. She looked really serious, and I thought she was upset about the meeting, even though I thought it had gone well. (This whole committee thing was a huge source of contention throughout the entire semester, so I thought maybe I had missed something, seeing as how I haven't been up at work for almost three weeks.) However, she just wanted to see how I was doing and said she didn't want to ask in front of everyone because she didn't know if anyone else knew. It was sort of alarming since this colleague is the one I was relying on to tell everyone, and she was telling me that no one knows. WTF? What is wrong with my department that no one is gossiping about me?! LOL. I'm sure that EVERYONE in my mom's department knows! And with the help of my daughter, pretty much everyone at her school knows. Am I going to have to tell everyone in my own workplace myself?! When does that ever happen?!

The thing is that everyone knows about my hip/DVT saga, so I just figured people talk. Then again, when you're on crutches, that lends itself to discussion more than 'Hey, have you noticed that Waning seems to have a sore boob?' Ha. I mean, I feel like I want the people I work with to know, but I don't necessarily want to have to tell them myself. But how do you tell your colleagues that you want them to blab your news to everyone else? I really respect that everyone has kept quiet, but seriously, when was the last time you couldn't rely on the good old-fashioned grapevine to inform people about stuff? What type of bizzaro world am I living in?

The good news is...

... that Dr. L called yesterday while I was roaming through Kmart while my kids were at gymnastics.

And...

... she said that the results of my oncotype had come back and that my tumor was a '13,' which is low risk, and therefore I will not need to do chemo.

!!!

So, that is awesome, awesome news that I should have shared yesterday, but I was fully entrenched in whining about my parents, and did not want this bit of Best News Ever to get lost in my self-pity and pissiness.

Also, I forgot to to mention that we talked with Dr. M about going on vacation, and he was 100% a-okay with it. So, it looks like we are going, which is also awesome, because I think getting away will do me a world of good. And knowing that I don't have to come back and go through chemo will make it even better. I guess this is the silver lining to needing a second surgery.

And speaking of needing a vacation, I have to go up to work in a few minutes. It's funny, it has been less than three weeks since I was last at work, but it feels like it has been a year. It's going to be weird...

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.