It occurred to me as I was madly trying to clean out my kitchen before heading off on vacation that I am not excited about vacation; it is just one more stressor to add to a list that already far exceeds my capacity for stress. I don't want to pack. I don't want to go to the beach. I don't want to be hot and sweaty and not really be able to get in the water. I don't want to get sand all over me. I don't want to get bitten by bugs. I don't want to spend money on cheesy crap I don't need. I don't want to get up at the butt crack of dawn tomorrow. I don't want to fly. I don't want to arrive and realize that I forgot X, Y, and Z (and probably considering my mental state A, B, C, D, E, and F, too).
In fact, as I was cleaning the kitchen, I came to the realization that what I really wanted to be doing is lying in fetal position and bawling. I feel like I've said a number of times in the past few weeks that I want to cry, but the truth is that I haven't shed more than a few tears. In the beginning, I cried a lot more. But I cared more then, I think. I don't know if I care enough anymore to cry, and that's actually a sort of scary feeling. I could use a good cry. It's the one thing I want right now, and I can't even do it.
Maybe this is the feeling people describe as hitting rock bottom. And if it is not rock bottom, then I am screwed.
Friday, June 26, 2015
Thursday, June 25, 2015
Three Strong Opinions
After allowing myself a day of shock and self-pity, I'm now in full-blown information-gathering mode about the smartest way to proceed. Unfortunately, I am coming to grips with the idea that where I am emotionally might not match up with what makes the most sense, and I need to be open to all options. That said, I've been gathering opinions from message boards, friends, medical professionals, stray dogs, etc. LOL.
Opinion #1
In this post, I wrote about a woman I worked with in grad school with whom I remain friendly ( = Facebook friends, though I think I am pickier about my FB friends than some). This woman had breast cancer in her early 20s and again a few years ago, this last time opting for a bilateral mastectomy. This latest turn of events motivated me to write to her and ask for some of her thoughts. She replied:
Opinion #2
Knowing that I was meeting with a radiation oncologist this morning, I was actually super stressed about how negative I was feeling about radiation, and went to the appointment armed with a bunch of questions: Will there be long-term effects to my tissues? Possible damage to my lungs and heart? WHAT IF I do need reconstruction sometime in the future? How much has radiation improved in the past 10-15 years?
For the four hours that I slept, I had nightmares about radiation therapy, until our smoke alarm went off around 4 AM for no apparent reason. I couldn't go back to sleep after that, so I was feeling very groggy and shell-shocked at my 8 AM appointment.
Of course, the appointment started off with an informational video about how safe and effective radiation therapy is, and was full of a bunch of smiling people and really good-looking MDs, techs, and physicists. LOL. Then we met with Dr. J, the radiation oncologist, and I immediately liked her. She had come highly recommended from radiation oncologists at University Hospital, as well as from a colleague who had breast cancer about 10 years ago, and as with Dr. L, I was not disappointed.
She started off going through my history with me at length, then did a physical exam. And then... I put my clothes back on, and she came back into the room with a heated blanket for me, because I was freezing during the physical exam. We had a frank discussion. Looking back, when she started the discussion, I should have known it wasn't good. But at the time I was all lah-dee-dah, I love this woman happy.
Then she told me that she could not in all honesty recommend anything but a mastectomy for me at this point. She was very matter-of-fact about it, but also very compassionate. She said this was a surprising result; there was not any reason to question my choice to have a lumpectomy in the first place, and not even any reason to even think the re-excision wouldn't be successful. It is just one of those unlucky things. All signs pointed toward the direction I had chosen being a good choice, but unfortunately it didn't turn out that way.
I asked her what she thought about the possibility of the 'benign-appearing' calcifications in my right breast being DCIS, and she said that there was no real reason to think they were. She understood my thinking, but said those were thoughts based on fear and emotion, and there was nothing with a medical or scientific basis that should lead me to think that. She said that she was personally not a supporter of doing mastectomies on healthy breasts, and knew that Dr. L wasn't, either; in fact, they both agreed that too many mastectomies were performed these days. Yet she made it clear that was her recommendation for me. Not a bilateral mastectomy, but a mastectomy on my left breast.
She wouldn't even talk about radiation therapy with me, since I would most likely not need radiation with a mastectomy.
Not a lot of gray in that opinion.
It's too bad, because I really liked her.
Opinion #3
After my appointment, I raced up to work for an interview, then headed off to my appointment with Dr. M. I was surprised at how broad-based Dr. J's knowledge was, and was pleasantly surprised by her ability to talk with me in-depth about so many non-radiation-oncology related aspects of my cancer. I mean, duh, she is an MD, of course, but I've met physical therapists who only deal with hands who can't even give you insight into, like, shoulder pain. And my orthopedist refused to even try to talk to me about the side effects of Xarelto I was experiencing. My goal was to head off on vacation with advice from a medical professional to help me form rational thoughts, and Dr. J satisfied this need. I wasn't quite sure if I really needed to see Dr. M, but I kept the appointment since they had been so great to work me in, and I figured another opinion wouldn't be bad.
Dr. M was wonderful; we really click. I feel like he really 'gets' me, and that we are a lot alike in that he is very intense, but yet somehow very easy to talk to. I am quite an intense, Type A person, but I think I'm pretty easy to talk to, especially if I'm with another person who is easy to talk to. I told him I just really wanted to talk to someone before I headed off for vacation, so I could start to form a rational plan. He said it was unfortunate that Dr. L was on vacation, then attempted to call her on his cell phone on my behalf. LOL. When it went straight to voice mail, he declared in a frustrated voice, 'She's not answering! I don't know if she is out of the country or what!' It was sort of cute, actually. I assured him that I understood. As much as I really wish I could talk to her, I get it. I mean, REALLY. I get it.
Dr. M started off being somewhat wishy-washy, going on about how this was a big decision, very personal, blah blah blah. Finally I asked him point blank what he would do if he were a woman. LOL. He said he could not pretend to be a woman, but... If it were my wife... I would tell her to have a mastectomy. No question. Absolutely no question. But then he said that was a personal opinion, not a medical or scientific one; since I had asked him a Very Personal Question, he thought it was fair to give me a Very Personal Answer. He was actually fairly emotional when he said this, to the point that I was worried I had crossed a forbidden line between doctor and patient. Then he said that as an Ashkenazi Jew, and someone who lived and breathed cancer every day, he had a certain paranoia about cancer that I might not have. He then added that he thought it was important for me to understand how his background might differ from my own (do I not look like an Ashkenazi Jew?!) in weighing how much his Very Personal Opinion meant to me and my own Very Personal Situation, which I appreciated. I don't ask medical professionals for their opinions lightly. Honestly, I don't even ask friends or colleagues for their opinions lightly, especially not when it's something like cancer. If we are talking about the best place to get a hair cut, yeah, whatever. But if I'm asking you for your thoughts on radiation oncologists or chemotherapy or mastectomies, it's because I respect you a great deal. All in all, it was a very philosophical conversation, which brings me full circle to what I was saying earlier. This guy gets me.
He did agree with Dr. J, though; he saw no need for a bilateral mastectomy, unless I was concerned about the cosmetic outcome. He also said that as you age, your real breast changes, whereas your fake one does not, so some women like to have them match up right away, and especially while they are young and insurance will pay for it. He said some women find such differences in their breasts as time goes on that they opt for surgery on the natural breast to try to match the fake breast, which can be difficult. Then he added, 'I hope you don't think I'm being superficial talking about cosmetic outcomes; I understand that it is important.' He went on to say that as a man, sometimes women didn't understand that he understood, and that as a man, maybe he couldn't ever fully understand the importance of breasts, but hoped that I understood that he really did understand, or was at least trying. Or something like that. LOL.
In the end, there was not a lot of gray in his opinion, even if it was a Very Personal Opinion.
Then he apologized and said he really needed to keep moving, and since he had already spent 25 minutes with me for a 15 minute appointment, I felt bad. However, he walked me out to the front, assuring me that whatever hormonal treatments he would be in charge of for me 'will be nothing compared to what you are going through right now.'
So now I have three strong opinions, none of which point me toward the path I was hoping for, nor expecting a few days ago. Nonetheless, there is comfort in strong opinions. I at least have clarity on what is likely the best and most logical route, so now I just need to work toward accepting it.
Opinion #1
In this post, I wrote about a woman I worked with in grad school with whom I remain friendly ( = Facebook friends, though I think I am pickier about my FB friends than some). This woman had breast cancer in her early 20s and again a few years ago, this last time opting for a bilateral mastectomy. This latest turn of events motivated me to write to her and ask for some of her thoughts. She replied:
So sorry you are going through all of this. So the first time I had lumpectomy, radiation and chemo. The second time I had extensive DCIS and Pagets, which is in the nipple. I opted for the double mastectomy because they said the odds of developing it in the other breast was very high. Like you, the DCIS did not show up on the scans. After the mastectomy they found significant changes in the non-affected breast that wasn't cancer, but what they call pre-cancer. Apparently it almost always develops into cancer eventually.
So, for me, I'm really glad I chose the double mastectomy. [The] emotional trauma associated with cancer also influenced my decision last time. Really didn't want to go through it again in the future. Also radiation causes permanent issues, so I'd avoid that if you can. The reconstruction isn't perfect, but I can totally live with it. Big decision either way. Please let me know what you decide and how you are doing. Try to relax and enjoy your vacation.In the interest of educating myself, I asked her what issues she had with radiation, and was somewhat horrified by her response. Just like with lumpectomy and mastectomy, it seems like the serious side effects of radiation are often not given enough attention. She replied:
Radiation causes permanent changes to your tissues. Lots of scar tissue, decreases blood flow to the area, etc. I've been in and out of PT for years dealing with range of motion issues in my arm and scar tissue from the radiation messing up movement in my ribs and neck. The big thing though, is once you've had radiation, you're not a candidate for traditional reconstruction in the future should you need it. That's why they took muscle, fat and blood vessels from my abdomen to create a new breast. My circulation to the area was shot and the tissue too damaged to handle an implant. I'm just telling you because I had no idea that radiation can create long term issues, and I wish someone had informed me. I'm not going to lie, the mastectomy wasn't fun, but it would have been much easier without the whole abdominal reconstruction surgery at the same time.Not a lot of gray in that opinion.
Opinion #2
Knowing that I was meeting with a radiation oncologist this morning, I was actually super stressed about how negative I was feeling about radiation, and went to the appointment armed with a bunch of questions: Will there be long-term effects to my tissues? Possible damage to my lungs and heart? WHAT IF I do need reconstruction sometime in the future? How much has radiation improved in the past 10-15 years?
For the four hours that I slept, I had nightmares about radiation therapy, until our smoke alarm went off around 4 AM for no apparent reason. I couldn't go back to sleep after that, so I was feeling very groggy and shell-shocked at my 8 AM appointment.
Of course, the appointment started off with an informational video about how safe and effective radiation therapy is, and was full of a bunch of smiling people and really good-looking MDs, techs, and physicists. LOL. Then we met with Dr. J, the radiation oncologist, and I immediately liked her. She had come highly recommended from radiation oncologists at University Hospital, as well as from a colleague who had breast cancer about 10 years ago, and as with Dr. L, I was not disappointed.
She started off going through my history with me at length, then did a physical exam. And then... I put my clothes back on, and she came back into the room with a heated blanket for me, because I was freezing during the physical exam. We had a frank discussion. Looking back, when she started the discussion, I should have known it wasn't good. But at the time I was all lah-dee-dah, I love this woman happy.
Then she told me that she could not in all honesty recommend anything but a mastectomy for me at this point. She was very matter-of-fact about it, but also very compassionate. She said this was a surprising result; there was not any reason to question my choice to have a lumpectomy in the first place, and not even any reason to even think the re-excision wouldn't be successful. It is just one of those unlucky things. All signs pointed toward the direction I had chosen being a good choice, but unfortunately it didn't turn out that way.
I asked her what she thought about the possibility of the 'benign-appearing' calcifications in my right breast being DCIS, and she said that there was no real reason to think they were. She understood my thinking, but said those were thoughts based on fear and emotion, and there was nothing with a medical or scientific basis that should lead me to think that. She said that she was personally not a supporter of doing mastectomies on healthy breasts, and knew that Dr. L wasn't, either; in fact, they both agreed that too many mastectomies were performed these days. Yet she made it clear that was her recommendation for me. Not a bilateral mastectomy, but a mastectomy on my left breast.
She wouldn't even talk about radiation therapy with me, since I would most likely not need radiation with a mastectomy.
Not a lot of gray in that opinion.
It's too bad, because I really liked her.
Opinion #3
After my appointment, I raced up to work for an interview, then headed off to my appointment with Dr. M. I was surprised at how broad-based Dr. J's knowledge was, and was pleasantly surprised by her ability to talk with me in-depth about so many non-radiation-oncology related aspects of my cancer. I mean, duh, she is an MD, of course, but I've met physical therapists who only deal with hands who can't even give you insight into, like, shoulder pain. And my orthopedist refused to even try to talk to me about the side effects of Xarelto I was experiencing. My goal was to head off on vacation with advice from a medical professional to help me form rational thoughts, and Dr. J satisfied this need. I wasn't quite sure if I really needed to see Dr. M, but I kept the appointment since they had been so great to work me in, and I figured another opinion wouldn't be bad.
Dr. M was wonderful; we really click. I feel like he really 'gets' me, and that we are a lot alike in that he is very intense, but yet somehow very easy to talk to. I am quite an intense, Type A person, but I think I'm pretty easy to talk to, especially if I'm with another person who is easy to talk to. I told him I just really wanted to talk to someone before I headed off for vacation, so I could start to form a rational plan. He said it was unfortunate that Dr. L was on vacation, then attempted to call her on his cell phone on my behalf. LOL. When it went straight to voice mail, he declared in a frustrated voice, 'She's not answering! I don't know if she is out of the country or what!' It was sort of cute, actually. I assured him that I understood. As much as I really wish I could talk to her, I get it. I mean, REALLY. I get it.
Dr. M started off being somewhat wishy-washy, going on about how this was a big decision, very personal, blah blah blah. Finally I asked him point blank what he would do if he were a woman. LOL. He said he could not pretend to be a woman, but... If it were my wife... I would tell her to have a mastectomy. No question. Absolutely no question. But then he said that was a personal opinion, not a medical or scientific one; since I had asked him a Very Personal Question, he thought it was fair to give me a Very Personal Answer. He was actually fairly emotional when he said this, to the point that I was worried I had crossed a forbidden line between doctor and patient. Then he said that as an Ashkenazi Jew, and someone who lived and breathed cancer every day, he had a certain paranoia about cancer that I might not have. He then added that he thought it was important for me to understand how his background might differ from my own (do I not look like an Ashkenazi Jew?!) in weighing how much his Very Personal Opinion meant to me and my own Very Personal Situation, which I appreciated. I don't ask medical professionals for their opinions lightly. Honestly, I don't even ask friends or colleagues for their opinions lightly, especially not when it's something like cancer. If we are talking about the best place to get a hair cut, yeah, whatever. But if I'm asking you for your thoughts on radiation oncologists or chemotherapy or mastectomies, it's because I respect you a great deal. All in all, it was a very philosophical conversation, which brings me full circle to what I was saying earlier. This guy gets me.
He did agree with Dr. J, though; he saw no need for a bilateral mastectomy, unless I was concerned about the cosmetic outcome. He also said that as you age, your real breast changes, whereas your fake one does not, so some women like to have them match up right away, and especially while they are young and insurance will pay for it. He said some women find such differences in their breasts as time goes on that they opt for surgery on the natural breast to try to match the fake breast, which can be difficult. Then he added, 'I hope you don't think I'm being superficial talking about cosmetic outcomes; I understand that it is important.' He went on to say that as a man, sometimes women didn't understand that he understood, and that as a man, maybe he couldn't ever fully understand the importance of breasts, but hoped that I understood that he really did understand, or was at least trying. Or something like that. LOL.
In the end, there was not a lot of gray in his opinion, even if it was a Very Personal Opinion.
Then he apologized and said he really needed to keep moving, and since he had already spent 25 minutes with me for a 15 minute appointment, I felt bad. However, he walked me out to the front, assuring me that whatever hormonal treatments he would be in charge of for me 'will be nothing compared to what you are going through right now.'
So now I have three strong opinions, none of which point me toward the path I was hoping for, nor expecting a few days ago. Nonetheless, there is comfort in strong opinions. I at least have clarity on what is likely the best and most logical route, so now I just need to work toward accepting it.
Wednesday, June 24, 2015
A Weeping Breast
When I woke up this morning, my camisole and my nightgown and the little pillow my daughter lovingly sewed for me yesterday were wet. Not soaking wet, but enough that I figured I fell asleep with my ice bag under my arm. Except there was no ice bag. I went to look at my breast in the mirror, and it still didn't seem infected. It did look very full, though, perhaps fuller than my right breast. It's the seroma; it filled in the space where the tumor used to be to the extent that it is now leaking. I raised my arm over my head. Sure enough, no more dimple. It's that 'better cosmetic result' my surgeon's NP was talking about. What a thrill; I so often go around topless with my arms raised above my head. LOL.
Ever since yesterday, I have felt like crying pretty much all the time. Now even my breast is crying. I feel like a zombie. Emotionally, this is the worst that I have felt in a long time. After my initial diagnosis, I had a few scares here and there, but ultimately, everything ended up being good news. Small tumor, early stage, not super aggressive, low chance of recurrence. What more can you ask for besides not having cancer at all? But now I have this extra beast of DCIS, which won't kill me, but can turn into something that does kill me. The trickiest part is that it didn't show up on my mammograms or MRI, so even though I will certainly be super vigilant from here on out about checking my breasts and going in for regular mammograms, it might not matter. I might only catch it after it becomes invasive. Maybe it is all over my breast. Maybe it is all over both breasts. I am trying to wrap my mind around this possibility, and think rationally about what my next steps should be. I was just settling into my post re-excision plan, getting advice on teaching through radiation, and starting to read up on how to best manage the side effects. Mastectomy was not even on my radar, but now it has been thrown down in front of me like a huge monster, rearing its ugly head no matter which path I imagine going down. My mind is mulling over so many different options right now, I can think neither clearly nor logically. I feel numb.
I desperately want to talk to my surgeon, but she won't be back until next week, at which point I will be gone on what was supposed to be a relaxing and fun, pre-radiation break. I at least need to talk to someone who knows something, and can lay out some options. I know there will be no clear-cut path for me, so it will be my decision, based on my gut feeling. At the very least, I can spend my vacation mulling things over, and Googling. That said, tomorrow is going to be one heck of a day. I have an early appointment with a radiation oncologist, which I planned a while back, just so I would know what to expect once I got back from vacation. After the appointment, I need to race up to work to interview a candidate for a search committee I'm on. At 1:30, I have an appointment with Dr. M. I'm not quite sure why, other than I need some hand-holding, and they were able to work me in. Unfortunately, I have to be back at work by 2:30 for another interview, so I'm not sure how that is going to work out, but I really don't want to leave for vacation without a frank conversation about What This Means. Am I reading into this too much? Or are my fears reasonable from a scientific point of view? Either way, knowing is better than not knowing, so that when I drown myself in thoughts over vacation, hopefully they are at least rational thoughts.
I also scheduled a consultation with a surgeon up at University Hospital for the Wednesday after we get back. I love Dr. L, but I feel like my case has suddenly gotten more complicated, and I'm definitely not going to consider having one or both of my boobs lopped off without a second opinion. As much as I don't want to have a mastectomy, if I think about it logically, there are advantages to it that I don't have the energy to go into now. It is like when my son was born. My water broke, so they attempted to induce labor. Unfortunately, without the padding of the amniotic fluid, he couldn't handle the strength of the contractions, which caused him great distress. As much as I didn't want to have a C-section, there was a certain point at which my stress over getting him out safely outweighed my desire to not have a C-section. Ultimately, I didn't end up needing a C-section, but by the time it was all over, I honestly couldn't have cared less one way or the other. I feel like I'm approaching that point of resignation now. I'm not sure I fucking care anymore.
Ever since yesterday, I have felt like crying pretty much all the time. Now even my breast is crying. I feel like a zombie. Emotionally, this is the worst that I have felt in a long time. After my initial diagnosis, I had a few scares here and there, but ultimately, everything ended up being good news. Small tumor, early stage, not super aggressive, low chance of recurrence. What more can you ask for besides not having cancer at all? But now I have this extra beast of DCIS, which won't kill me, but can turn into something that does kill me. The trickiest part is that it didn't show up on my mammograms or MRI, so even though I will certainly be super vigilant from here on out about checking my breasts and going in for regular mammograms, it might not matter. I might only catch it after it becomes invasive. Maybe it is all over my breast. Maybe it is all over both breasts. I am trying to wrap my mind around this possibility, and think rationally about what my next steps should be. I was just settling into my post re-excision plan, getting advice on teaching through radiation, and starting to read up on how to best manage the side effects. Mastectomy was not even on my radar, but now it has been thrown down in front of me like a huge monster, rearing its ugly head no matter which path I imagine going down. My mind is mulling over so many different options right now, I can think neither clearly nor logically. I feel numb.
I desperately want to talk to my surgeon, but she won't be back until next week, at which point I will be gone on what was supposed to be a relaxing and fun, pre-radiation break. I at least need to talk to someone who knows something, and can lay out some options. I know there will be no clear-cut path for me, so it will be my decision, based on my gut feeling. At the very least, I can spend my vacation mulling things over, and Googling. That said, tomorrow is going to be one heck of a day. I have an early appointment with a radiation oncologist, which I planned a while back, just so I would know what to expect once I got back from vacation. After the appointment, I need to race up to work to interview a candidate for a search committee I'm on. At 1:30, I have an appointment with Dr. M. I'm not quite sure why, other than I need some hand-holding, and they were able to work me in. Unfortunately, I have to be back at work by 2:30 for another interview, so I'm not sure how that is going to work out, but I really don't want to leave for vacation without a frank conversation about What This Means. Am I reading into this too much? Or are my fears reasonable from a scientific point of view? Either way, knowing is better than not knowing, so that when I drown myself in thoughts over vacation, hopefully they are at least rational thoughts.
I also scheduled a consultation with a surgeon up at University Hospital for the Wednesday after we get back. I love Dr. L, but I feel like my case has suddenly gotten more complicated, and I'm definitely not going to consider having one or both of my boobs lopped off without a second opinion. As much as I don't want to have a mastectomy, if I think about it logically, there are advantages to it that I don't have the energy to go into now. It is like when my son was born. My water broke, so they attempted to induce labor. Unfortunately, without the padding of the amniotic fluid, he couldn't handle the strength of the contractions, which caused him great distress. As much as I didn't want to have a C-section, there was a certain point at which my stress over getting him out safely outweighed my desire to not have a C-section. Ultimately, I didn't end up needing a C-section, but by the time it was all over, I honestly couldn't have cared less one way or the other. I feel like I'm approaching that point of resignation now. I'm not sure I fucking care anymore.
Tuesday, June 23, 2015
Positive Margins
My surgeon's NP just called to let me know that three out of the four margins from my re-excision were positive for DCIS.
WTF?
I repeat... WTF?
I went from one positive margin to three? I don't even know what I feel right now, except like crying. But I don't know if the tears are from anger or frustration or exhaustion or fear or resignation or shock or what. I was definitely NOT expecting this. In fact, since this whole ordeal began, this was probably the news I was least prepared for.
Fuck.
That's all I have to say right now: fuck.
Pardon my French.
WTF?
I repeat... WTF?
I went from one positive margin to three? I don't even know what I feel right now, except like crying. But I don't know if the tears are from anger or frustration or exhaustion or fear or resignation or shock or what. I was definitely NOT expecting this. In fact, since this whole ordeal began, this was probably the news I was least prepared for.
Fuck.
That's all I have to say right now: fuck.
Pardon my French.
Monday, June 22, 2015
What Lies Ahead
I had a horrible night last night.
Yesterday being Father's Day and the longest day of the year, the kids got to bed way too late, about an hour after I wished I were in bed. My husband is a really fantastic father, but one thing he absolutely sucks at is getting the kids to bed. I do my part, then... an hour later, he does his part. Anyway, around 9:30, when he was still putting the kids to bed, I decided to fold some laundry and watch Seinfeld. Around 10:30 PM, I took half a hydrocodone and immediately fell asleep. I woke up at 3 AM, tossed and turned for a few minutes, then got up and went to the bathroom. Usually if I go to the bathroom in the middle of the night, it's more of a sleepwalking/sleeppeeing exercise than anything, and I can go right back to sleep. But this morning I lay there for another 30 minutes before giving in and realizing there was no way I was going to sleep.
I was wide fucking awake, and my mind was racing in a million different directions. So I've finished surgery, hopefully. What next? This whole time I've been so focused on the surgery and so overwhelmed with work and accepting my diagnosis and educating myself about breast cancer and researching doctors and working through family bullshit and adjusting to my new reality and yada yada yada, that I've had little time to think about What Lies Ahead. And that is mostly a good thing. It is a classic stress management technique to try to stay in the moment. But now... Now I need to contemplate the future. Because the future is here.
I was thinking last night - what if surgery was the easy part? Surgery sounds so major, I just figured that has to be the hard part, especially with chemo out of the equation. And hell, I haven't cooked in, like, ages, because it turns out when you have surgery, your friends feed you and your family. It's not a bad gig. LOL. And as I educate myself about radiation therapy and its side effects, and anti-hormone therapy its side effects, I worry. I mentioned I didn't feel fully prepared for just how bad the lumpectomy was going to be, and in reading through the message boards on breastcancer.org, it seems like a recurring theme with radiation and hormone therapy that many women weren't prepared for how much they were going to suck. As I lay in bed last night, I kept thinking of how I feared the side effects of chemo so much, that any treatment that didn't make my hair fall out would be a-okay with me. I now realize that's not the case. Like... I have suuuuuuper terrible and sensitive skin - how awful will radiation be for my skin? And y'all already know I am a fucking bitch, so golly gee, I just can't wait to get on some medication that causes mood swings and insomnia. That's going to rock.
Probably the worst part is that there is really no end in sight. This is forever, my new reality. Even in 10 years, if I stop taking medication, I will forever worry about the cancer coming back. Many people say that they will do whatever it takes for peace of mind - have their breasts cut off, their ovaries and uterus taken out, radiation, chemo, the whole nine yards. But I will never ever have peace of mind again, no matter what I do. For the rest of my life, I will fully expect this cancer to come back, and the next time in a place that will kill me.
It is a weird thing, having cancer, then having it cut out of you. In theory, I should no longer have cancer, yet it seems too early to go around telling people, Yeah I had cancer, last month, but it's gone now. At the same time, saying, I have cancer sounds so morbid. Like Hey dude, I have cancer, be nice to me, I am dying! Is cancer like alcoholism - once an alcoholic, always an alcoholic, even if you've been sober for 20 years? At what point can you say you had cancer, past tense? I don't feel like I will ever be there, and that is an awful feeling.
But, onto more practical news. There is no point in wallowing in self-pity. We are all dying, after all, some of us faster than others, and some of us of things we won't ever know about until the moment they kill us. Knowing one of the dangers that lurks on your personal horizon is not necessarily a bad thing.
I finally got out of the bed around 3:30 AM and went downstairs to the office and spent two hours watching gymnastics videos from the 2004 Olympics. LOL. By 5:30, it was light and the birds were chirping, and I was tired, so I went back upstairs and got in bed. Of course the kids were up at 6:30 after a slumber party in my daughter's room with 10 kids total (eight of them imaginary, mind you). So basically I was a zombie all day. I had a follow-up appointment with my surgeon's nurse practitioner, and my mom came and watched the kids. Unfortunately, I'm sure whatever amends we made were erased because I was soooo tired and really didn't feel like talking to her. I'm sure she interpreted it as me being angry. Whatever.
My appointment was fairly useless. The pathology report from my surgery still isn't back (WTF?), so the NP and I briefly talked about my pain, and what type of bra I should (or should not) wear to help aforementioned pain. She didn't really have any amazing insights; I mean, I've tried just about every possible type of bra and they all have their downfalls. I left with an ace bandage wrapped around me, which kind of helped my breast pain, but in the end was too weird. So it immediately came off when I got home.
The NP also said that I have a little fluid build-up in my surgical site - a seroma. However, it is not really worrisome. It is not infected, and sometimes seromas can be good, because the location of the lump fills with fluid, which is like a natural implant, and gives 'a better cosmetic result.' LOL. It's only really a problem if the fluid build-up causes pain and prevents healing; then you need to have it drained, which trust me, isn't high on my list of priorities. I realized, though, when the NP was talking to me about seromas, that I really don't care about the cosmetic results. I mean, I sort of do I guess. Less disfiguration is always better. But it's not as if anyone really sees my bare breasts enough that I would think, Hey, I'm so glad I have fluid build-up where my cancer used to be because now I don't have a dimple in my boob, and I didn't even have to get an implant. I mean WTF? I guess it goes with the lumpectomy territory. Everyone assumes if you opt for lumpectomy, it is a choice that is ultimately grounded in the cosmetic outcome, when sometimes it's really more because you didn't want to go through the pain of having your entire boob lopped off.
Anyway, I'm now five days post re-excision lumpectomy and I have to say I feel pretty good. I've been able to settle into a fairly normal routine, with a few restrictions, and I'm not even a week out. All in all, it's good news, but one thing is for sure - I'll be taking an Ambien tonight.
Yesterday being Father's Day and the longest day of the year, the kids got to bed way too late, about an hour after I wished I were in bed. My husband is a really fantastic father, but one thing he absolutely sucks at is getting the kids to bed. I do my part, then... an hour later, he does his part. Anyway, around 9:30, when he was still putting the kids to bed, I decided to fold some laundry and watch Seinfeld. Around 10:30 PM, I took half a hydrocodone and immediately fell asleep. I woke up at 3 AM, tossed and turned for a few minutes, then got up and went to the bathroom. Usually if I go to the bathroom in the middle of the night, it's more of a sleepwalking/sleeppeeing exercise than anything, and I can go right back to sleep. But this morning I lay there for another 30 minutes before giving in and realizing there was no way I was going to sleep.
I was wide fucking awake, and my mind was racing in a million different directions. So I've finished surgery, hopefully. What next? This whole time I've been so focused on the surgery and so overwhelmed with work and accepting my diagnosis and educating myself about breast cancer and researching doctors and working through family bullshit and adjusting to my new reality and yada yada yada, that I've had little time to think about What Lies Ahead. And that is mostly a good thing. It is a classic stress management technique to try to stay in the moment. But now... Now I need to contemplate the future. Because the future is here.
I was thinking last night - what if surgery was the easy part? Surgery sounds so major, I just figured that has to be the hard part, especially with chemo out of the equation. And hell, I haven't cooked in, like, ages, because it turns out when you have surgery, your friends feed you and your family. It's not a bad gig. LOL. And as I educate myself about radiation therapy and its side effects, and anti-hormone therapy its side effects, I worry. I mentioned I didn't feel fully prepared for just how bad the lumpectomy was going to be, and in reading through the message boards on breastcancer.org, it seems like a recurring theme with radiation and hormone therapy that many women weren't prepared for how much they were going to suck. As I lay in bed last night, I kept thinking of how I feared the side effects of chemo so much, that any treatment that didn't make my hair fall out would be a-okay with me. I now realize that's not the case. Like... I have suuuuuuper terrible and sensitive skin - how awful will radiation be for my skin? And y'all already know I am a fucking bitch, so golly gee, I just can't wait to get on some medication that causes mood swings and insomnia. That's going to rock.
Probably the worst part is that there is really no end in sight. This is forever, my new reality. Even in 10 years, if I stop taking medication, I will forever worry about the cancer coming back. Many people say that they will do whatever it takes for peace of mind - have their breasts cut off, their ovaries and uterus taken out, radiation, chemo, the whole nine yards. But I will never ever have peace of mind again, no matter what I do. For the rest of my life, I will fully expect this cancer to come back, and the next time in a place that will kill me.
It is a weird thing, having cancer, then having it cut out of you. In theory, I should no longer have cancer, yet it seems too early to go around telling people, Yeah I had cancer, last month, but it's gone now. At the same time, saying, I have cancer sounds so morbid. Like Hey dude, I have cancer, be nice to me, I am dying! Is cancer like alcoholism - once an alcoholic, always an alcoholic, even if you've been sober for 20 years? At what point can you say you had cancer, past tense? I don't feel like I will ever be there, and that is an awful feeling.
But, onto more practical news. There is no point in wallowing in self-pity. We are all dying, after all, some of us faster than others, and some of us of things we won't ever know about until the moment they kill us. Knowing one of the dangers that lurks on your personal horizon is not necessarily a bad thing.
I finally got out of the bed around 3:30 AM and went downstairs to the office and spent two hours watching gymnastics videos from the 2004 Olympics. LOL. By 5:30, it was light and the birds were chirping, and I was tired, so I went back upstairs and got in bed. Of course the kids were up at 6:30 after a slumber party in my daughter's room with 10 kids total (eight of them imaginary, mind you). So basically I was a zombie all day. I had a follow-up appointment with my surgeon's nurse practitioner, and my mom came and watched the kids. Unfortunately, I'm sure whatever amends we made were erased because I was soooo tired and really didn't feel like talking to her. I'm sure she interpreted it as me being angry. Whatever.
My appointment was fairly useless. The pathology report from my surgery still isn't back (WTF?), so the NP and I briefly talked about my pain, and what type of bra I should (or should not) wear to help aforementioned pain. She didn't really have any amazing insights; I mean, I've tried just about every possible type of bra and they all have their downfalls. I left with an ace bandage wrapped around me, which kind of helped my breast pain, but in the end was too weird. So it immediately came off when I got home.
The NP also said that I have a little fluid build-up in my surgical site - a seroma. However, it is not really worrisome. It is not infected, and sometimes seromas can be good, because the location of the lump fills with fluid, which is like a natural implant, and gives 'a better cosmetic result.' LOL. It's only really a problem if the fluid build-up causes pain and prevents healing; then you need to have it drained, which trust me, isn't high on my list of priorities. I realized, though, when the NP was talking to me about seromas, that I really don't care about the cosmetic results. I mean, I sort of do I guess. Less disfiguration is always better. But it's not as if anyone really sees my bare breasts enough that I would think, Hey, I'm so glad I have fluid build-up where my cancer used to be because now I don't have a dimple in my boob, and I didn't even have to get an implant. I mean WTF? I guess it goes with the lumpectomy territory. Everyone assumes if you opt for lumpectomy, it is a choice that is ultimately grounded in the cosmetic outcome, when sometimes it's really more because you didn't want to go through the pain of having your entire boob lopped off.
Anyway, I'm now five days post re-excision lumpectomy and I have to say I feel pretty good. I've been able to settle into a fairly normal routine, with a few restrictions, and I'm not even a week out. All in all, it's good news, but one thing is for sure - I'll be taking an Ambien tonight.
Friday, June 19, 2015
Post Re-Excision Lumpectomy: Day 2
I've come to the conclusion that Day 2 post-surgery is my least favorite, at least of the surgeries I've had, which admittedly is a very small number. The day after surgery, you're not expecting/expected to feel good, and you can lie around all day and not feel bad about it. But by the second day, you feel much better, and you feel antsy, and you want to do stuff, only you don't quite feel good enough, and your husband goes back to work, and you have to take care of the kids, and overall you don't really get any rest despite the fact that you still need it. And it also seems like your pain is actually worse than the day before, but that's probably because you aren't taking pain meds and you're up and about doing a lot of stuff that causes pain.
All in all, I feel a little cranky. Originally, my husband told me he was taking the day off, but then he didn't. I get it, I really do. My husband's boss has been great about giving him the time off that he needs to take care of me, take care of the kids, take care of Stuff, and for that I am truly grateful. I have no idea how people with inflexible jobs and jerkwad bosses could do this. At the same time, the very thing that makes jobs flexible also makes them not flexible. In my job, for example, I can 'take the day off' and not grade papers, but those papers have to get graded eventually. If I don't grade them because I'm off having surgery, that's my prerogative, but I still have to grade them at some point. It's not like a shift in a department store where you just get someone to cover for you, then go in the next time and pick up right where you left off. My husband's job is the same way; he doesn't work regular 8-5 hours, but in the end, he has to get stuff done, one way or another. And so... he worked today. I woke up around 8:00 and went downstairs to find my husband on a teleconference and my son playing in the sandbox, at which point I felt obligated to feed my son breakfast and keep him out of my husband's way. And that's about how the rest of the day went.
I really shouldn't complain, though. While I do have some intense, throbbing pain still, I have it pretty good. My parents came over this afternoon and took the kids on a bike ride to get some ice cream. Since my son is only three and just recently learned how to ride a bike (with training wheels), and the ice cream place is almost a mile away, this took a couple of hours. Around the same time my parents came to get the kids, a stellar friend came over with food for dinner. (Gee, don't you feel sorry for me?) After she left, I debated whether I should take my long-awaited 48-hour-post-surgery shower, or try to grab a nap. I eventually opted for the cat nap. And now, my husband has extracted himself from work and taken the kids to the pool, so I think I'll head for the shower.
All in all, I feel a little cranky. Originally, my husband told me he was taking the day off, but then he didn't. I get it, I really do. My husband's boss has been great about giving him the time off that he needs to take care of me, take care of the kids, take care of Stuff, and for that I am truly grateful. I have no idea how people with inflexible jobs and jerkwad bosses could do this. At the same time, the very thing that makes jobs flexible also makes them not flexible. In my job, for example, I can 'take the day off' and not grade papers, but those papers have to get graded eventually. If I don't grade them because I'm off having surgery, that's my prerogative, but I still have to grade them at some point. It's not like a shift in a department store where you just get someone to cover for you, then go in the next time and pick up right where you left off. My husband's job is the same way; he doesn't work regular 8-5 hours, but in the end, he has to get stuff done, one way or another. And so... he worked today. I woke up around 8:00 and went downstairs to find my husband on a teleconference and my son playing in the sandbox, at which point I felt obligated to feed my son breakfast and keep him out of my husband's way. And that's about how the rest of the day went.
I really shouldn't complain, though. While I do have some intense, throbbing pain still, I have it pretty good. My parents came over this afternoon and took the kids on a bike ride to get some ice cream. Since my son is only three and just recently learned how to ride a bike (with training wheels), and the ice cream place is almost a mile away, this took a couple of hours. Around the same time my parents came to get the kids, a stellar friend came over with food for dinner. (Gee, don't you feel sorry for me?) After she left, I debated whether I should take my long-awaited 48-hour-post-surgery shower, or try to grab a nap. I eventually opted for the cat nap. And now, my husband has extracted himself from work and taken the kids to the pool, so I think I'll head for the shower.
Thursday, June 18, 2015
Post Re-Excision Lumpectomy: Day 1
I've alternated today between feeling super tired and kind of out of it, and feeling really good ( = went downstairs, outside, walked around my yard, and even pulled a few weeds). I woke up at 6 AM, took a hydrocodone, then - more out of fear than actual pain - took another one at 10 AM. I still have a lot of throbbing pain, which I don't remember from last time, but I've been able to manage it well all day with ice. Overall, I'm still thrilled with how good I feel.
I feel like during the original lumpectomy, I was still reeling from the shock of my diagnosis and in the hysterical mode of GET THIS SHIT OUT OF ME! This time around, there was a much more ho-hum feeling. I know that due to the timing of my surgeon's vacation and our vacation and the ability for us to schedule appointments with various med oncs, there was not much flexibility for when this surgery would be. My surgeon had to squeeze me in, and... it definitely had that feel to it. Dr. L was her usual wonderful self, she just seemed a little more rushed than usual. From a patient's perspective, surgery is such a big deal, you sort of imagine that everyone's day centers around you and you alone, and it's hard to imagine that your surgery is so simple and routine that it's something your surgeon is squeezing in during what is normally her lunch break. It's a little unnerving to think that before she carves you out, she probably did at least 2-3 other surgeries. But then you have to figure that if it didn't work that way, it would probably be 2-3 months before you could get in for surgery.
Anyway, my surgery was tentatively scheduled for 2:15 PM, with a 1:00 check-in time. However, during my pre-op phone consult, I was asked to come in at 12:30 instead, because there was a chance the surgery could happen earlier, depending on how my surgeon's day unfolded. In the end, I think it ended up being pretty close to 2:15, since I didn't get to even start my pre-op stuff until 1:00. And apparently my surgeon had another surgery after mine, because normally she checks in with whoever is out in the waiting room immediately afterward, but she didn't. The good news is that I was awake and semi-coherent by the time she came by, so I got to hear the low down and ask her questions.
Waiting all morning was torture. I was hungry, not to mention thirsty, especially after a, um, fun night with my friends the night before. LOL. Supposedly I could have sips of water up until 8 AM, only I woke up a little after 8 AM feeling slightly dehydrated, so... basically I was thirsty the whole day. My husband had a lunch meeting he just couldn't miss, so my mom took me to the surgery while my dad took the kids. Needless to say, that was interesting. I've written about my parents before, and while it was good they could be involved and feel helpful, it definitely added an element of stress that would not otherwise have been there. Fortunately, my mom behaved herself very well. Unfortunately, my son... not so much. Let's just say that it will be a long, long time before my dad watches the kids again. My parents weren't going to tell me that my son had been a hellion, but of course my daughter informed me after I asked. My son had actually been a pain all morning, and was in the middle of a mega meltdown when my parents came over, which I didn't tell my dad, because I didn't want him to be freaked out about having the kids by himself. Eh, you win some, you lose some.
Before going in for surgery, I had the usual encounters with the patient care tech, nurse, anesthesiologist, and surgeon, and found that when you have surgery mid-day, no one is as chatty, and everyone seems like they can't wait for the day to be over. This is slightly unnerving, but I found solace in the fact that I was having a very simple, 30-minute procedure done, and not a double mastectomy with reconstruction.
I mentioned being a little weirded out the last time because I was fully conscious when they took me into the OR. This time, since the OR was only about 20 feet from where I was doing my pre-op stuff, the nurse just had me walk myself into the OR. I was actually carrying my own IV bag, too, until they realized I wasn't holding up high enough. LOL. The nurse showed me how she was checking herself and another nurse into the surgery on the computer, then had me crawl up and lie down on the operating table. Eventually my surgeon and the anesthesiologist came in, and the anesthesiologist said she was starting the meds that were going to make me go to sleep. I remembered from the last time that it only took 10 seconds before I was out, but this doctor did it in a little different order, I think. She told me one of the meds was going to burn, which I definitely don't remember from last time. When she administered it, I said 'Yooooow!' just to let her know that I felt it. She replied, 'The good news is that you won't remember this,' so I then used my 10 seconds to inform them that I remembered having the LMA taken out of me the last time, even though I wasn't supposed to. LOL. I bet they were super happy when the meds kicked in and I was knocked out. (And for the record, I DO remember the stinging, burning pain.)
And that was it.
I woke up with extreme, throbbing pain all over my chest, so of course my first thought was they had done a complete mastectomy. I immediately held my hand up to feel if I still had a breast at all. Ha. After what felt like forever - it was definitely BUSY - a nurse came over and offered me some pain meds, which helped a lot. Then she asked if I was ready for my mom to come in, and I said that I was not. LOL. After the pain meds kicked in and I was able to go to my Happy Place, they went and got my mom. My husband had also arrived, so that made it a little easier - though he had to leave fairly quickly again. After a while, Dr. L came by and said everything had gone well and 'You did great!' which I've never understood. How does one 'do great' during surgery under general anesthesia?! Hopefully it is the surgeon who does great, and not the patient. LOL. Anyway, since I'm not going to see her for my post-op visit, since she is going on vacation, I asked her what would happen if the margins weren't clean this time, even though I didn't really want to think about this possibility. She said it really depended. If they weren't clean by just a little, she'd be fine going back in yet another time. But if they weren't clean as in there was carcinoma all over the place, she said she would recommend a mastectomy, adding that, 'You don't have very large breasts, so if there is still extensive carcinoma, you wouldn't get good cosmetic results.' So my mom asked her if she felt optimistic about clean margins, and she said, 'I do!' then added. 'I always feel optimistic!' So... I guess all that is left is to try to feel optimistic and pray for clean margins.
I feel like had to wait around forever before I could leave this time. This was different from the last time, when I feel like they were anxious to get rid of me, and I actually left before I felt ready. Maybe it just seemed like forever, though, because I feel like I was home by 5 PM. I dozed and watched videos for the rest of the night, which is pretty much what I did all day today, too. I did, however, actually get dressed and put my contacts in this morning, which is more than I could do the last time. And now... I am off to pop a hydrocodone and hopefully be able to get a good night's sleep.
I feel like during the original lumpectomy, I was still reeling from the shock of my diagnosis and in the hysterical mode of GET THIS SHIT OUT OF ME! This time around, there was a much more ho-hum feeling. I know that due to the timing of my surgeon's vacation and our vacation and the ability for us to schedule appointments with various med oncs, there was not much flexibility for when this surgery would be. My surgeon had to squeeze me in, and... it definitely had that feel to it. Dr. L was her usual wonderful self, she just seemed a little more rushed than usual. From a patient's perspective, surgery is such a big deal, you sort of imagine that everyone's day centers around you and you alone, and it's hard to imagine that your surgery is so simple and routine that it's something your surgeon is squeezing in during what is normally her lunch break. It's a little unnerving to think that before she carves you out, she probably did at least 2-3 other surgeries. But then you have to figure that if it didn't work that way, it would probably be 2-3 months before you could get in for surgery.
Anyway, my surgery was tentatively scheduled for 2:15 PM, with a 1:00 check-in time. However, during my pre-op phone consult, I was asked to come in at 12:30 instead, because there was a chance the surgery could happen earlier, depending on how my surgeon's day unfolded. In the end, I think it ended up being pretty close to 2:15, since I didn't get to even start my pre-op stuff until 1:00. And apparently my surgeon had another surgery after mine, because normally she checks in with whoever is out in the waiting room immediately afterward, but she didn't. The good news is that I was awake and semi-coherent by the time she came by, so I got to hear the low down and ask her questions.
Waiting all morning was torture. I was hungry, not to mention thirsty, especially after a, um, fun night with my friends the night before. LOL. Supposedly I could have sips of water up until 8 AM, only I woke up a little after 8 AM feeling slightly dehydrated, so... basically I was thirsty the whole day. My husband had a lunch meeting he just couldn't miss, so my mom took me to the surgery while my dad took the kids. Needless to say, that was interesting. I've written about my parents before, and while it was good they could be involved and feel helpful, it definitely added an element of stress that would not otherwise have been there. Fortunately, my mom behaved herself very well. Unfortunately, my son... not so much. Let's just say that it will be a long, long time before my dad watches the kids again. My parents weren't going to tell me that my son had been a hellion, but of course my daughter informed me after I asked. My son had actually been a pain all morning, and was in the middle of a mega meltdown when my parents came over, which I didn't tell my dad, because I didn't want him to be freaked out about having the kids by himself. Eh, you win some, you lose some.
Before going in for surgery, I had the usual encounters with the patient care tech, nurse, anesthesiologist, and surgeon, and found that when you have surgery mid-day, no one is as chatty, and everyone seems like they can't wait for the day to be over. This is slightly unnerving, but I found solace in the fact that I was having a very simple, 30-minute procedure done, and not a double mastectomy with reconstruction.
I mentioned being a little weirded out the last time because I was fully conscious when they took me into the OR. This time, since the OR was only about 20 feet from where I was doing my pre-op stuff, the nurse just had me walk myself into the OR. I was actually carrying my own IV bag, too, until they realized I wasn't holding up high enough. LOL. The nurse showed me how she was checking herself and another nurse into the surgery on the computer, then had me crawl up and lie down on the operating table. Eventually my surgeon and the anesthesiologist came in, and the anesthesiologist said she was starting the meds that were going to make me go to sleep. I remembered from the last time that it only took 10 seconds before I was out, but this doctor did it in a little different order, I think. She told me one of the meds was going to burn, which I definitely don't remember from last time. When she administered it, I said 'Yooooow!' just to let her know that I felt it. She replied, 'The good news is that you won't remember this,' so I then used my 10 seconds to inform them that I remembered having the LMA taken out of me the last time, even though I wasn't supposed to. LOL. I bet they were super happy when the meds kicked in and I was knocked out. (And for the record, I DO remember the stinging, burning pain.)
And that was it.
I woke up with extreme, throbbing pain all over my chest, so of course my first thought was they had done a complete mastectomy. I immediately held my hand up to feel if I still had a breast at all. Ha. After what felt like forever - it was definitely BUSY - a nurse came over and offered me some pain meds, which helped a lot. Then she asked if I was ready for my mom to come in, and I said that I was not. LOL. After the pain meds kicked in and I was able to go to my Happy Place, they went and got my mom. My husband had also arrived, so that made it a little easier - though he had to leave fairly quickly again. After a while, Dr. L came by and said everything had gone well and 'You did great!' which I've never understood. How does one 'do great' during surgery under general anesthesia?! Hopefully it is the surgeon who does great, and not the patient. LOL. Anyway, since I'm not going to see her for my post-op visit, since she is going on vacation, I asked her what would happen if the margins weren't clean this time, even though I didn't really want to think about this possibility. She said it really depended. If they weren't clean by just a little, she'd be fine going back in yet another time. But if they weren't clean as in there was carcinoma all over the place, she said she would recommend a mastectomy, adding that, 'You don't have very large breasts, so if there is still extensive carcinoma, you wouldn't get good cosmetic results.' So my mom asked her if she felt optimistic about clean margins, and she said, 'I do!' then added. 'I always feel optimistic!' So... I guess all that is left is to try to feel optimistic and pray for clean margins.
I feel like had to wait around forever before I could leave this time. This was different from the last time, when I feel like they were anxious to get rid of me, and I actually left before I felt ready. Maybe it just seemed like forever, though, because I feel like I was home by 5 PM. I dozed and watched videos for the rest of the night, which is pretty much what I did all day today, too. I did, however, actually get dressed and put my contacts in this morning, which is more than I could do the last time. And now... I am off to pop a hydrocodone and hopefully be able to get a good night's sleep.
Wednesday, June 17, 2015
Re-Excision Lumpectomy
Wow, that was a long day, but I wanted to write a brief update. I am doing well, and already feel soooo much better than I did at this point the last time around. I am feeling a lot of pain, mostly throbbing pain. When I woke up from surgery I seriously thought they had done a mastectomy, and my pain level was through the roof. This improved fairly quickly after a dose of fentanyl through my IV and two hydrocodones. I didn't get as much pain medicine as the first time, which I think actually helped, because last time I was spinning for the entire day, and that in itself was so unpleasant I think it negated a lot of the pain relief. I got home and got settled about two hours after my first dose of hydrocodone and could not believe I had to wait another two hours until I could take more. (Do I sound like a junkie or what? LOL.) But because I was actually fairly coherent, I was able to manage the pain very effectively with ice and heat. I will definitely be ready for another dose of hydrocodone in an hour, but overall the pain is nothing like the last time. My whole breast, what's left of it anyway, alternates between an intense, dull ache and throbbing pain, but I can move my arm pretty well. Whatever pain I have when I move my arm was already there from before, and I don't feel like this surgery added any additional pain, so that is a huge relief.
I was extremely drowsy all afternoon, and couldn't seem to stay awake for more than an hour or so at a time. I'm a little worried about whether or not I'll be able to sleep well tonight, but... at least I don't have anywhere I have to be tomorrow, and my husband took the day off, so I don't have to worry about the kids. When I got home, I was STARVING, which was actually a good thing, because last time I didn't have much of an appetite for, like, a good 4-5 days. I ate a bowl of soup before drifting off to Seinfeld DVDs, then a friend brought a pizza over (the same friend who brought a pizza last time :)), and I actually ate two huge slices.
I will give a more detailed update tomorrow, but I just wanted to check in and say that I feel So. Much. Better. than last time. I basically feel crappy, but it is typical post-surgery crappy, and so much better than I expected. I am pretty much elated by how much less crappy I feel than I thought I would. I am confident this is going to be a much smoother and easier recovery, and I am extremely thankful for that. Thank you all for your continued love and support - it means so much to me.
I was extremely drowsy all afternoon, and couldn't seem to stay awake for more than an hour or so at a time. I'm a little worried about whether or not I'll be able to sleep well tonight, but... at least I don't have anywhere I have to be tomorrow, and my husband took the day off, so I don't have to worry about the kids. When I got home, I was STARVING, which was actually a good thing, because last time I didn't have much of an appetite for, like, a good 4-5 days. I ate a bowl of soup before drifting off to Seinfeld DVDs, then a friend brought a pizza over (the same friend who brought a pizza last time :)), and I actually ate two huge slices.
I will give a more detailed update tomorrow, but I just wanted to check in and say that I feel So. Much. Better. than last time. I basically feel crappy, but it is typical post-surgery crappy, and so much better than I expected. I am pretty much elated by how much less crappy I feel than I thought I would. I am confident this is going to be a much smoother and easier recovery, and I am extremely thankful for that. Thank you all for your continued love and support - it means so much to me.
Tuesday, June 16, 2015
Fear of the Known
In what seems like a former life, I was actually a very serious athlete. Although the younger me did a number of sports, my main sports were gymnastics, then diving. Both of these sports involve a lot of fear. When you are trying to learn a new skill, there is the fear of the unknown. Will I do the right thing? Will I get lost in the air? Will I get hurt? Sometimes the first time you try something, it's easier than you thought, and so the second time you do it, you feel more confident. But sometimes the first try is a flop, and your fear is worse the second time around. It is the fear of the known versus the fear of the unknown. The fear of what you know can happen, because it did happen.
When I was pregnant with my daughter, I was confident I would have a drug-free birth with no problem. After all, I have a high pain tolerance! I walked around on a broken foot for several months before realizing it was broken! I've tweaked muscles, torn cartilage, and done all sorts of mean and nasty things to my body and still soldiered on! But, despite this, once back labor set in, I said yes to the epidural faster than you can even say epidural. LOL. Unfortunately, immediately afterward, my blood pressure dropped, my daughter's heart rate dropped to 40, and she was vacuumed out in an emergency procedure just a few minutes shy of a C-section. Coincidence? Maybe. But when I was pregnant with my son, I was dead set against the epidural. Dead set. Of course, remembering the intense pain that came with labor that caused me to beg for drugs like I have never ever begged for them before, and knowing that this was not an option for me, made me dread labor the second time around. Fear of the known.
I feel the same way going into surgery #2 as I did going into childbirth #2; it's almost as if I feel more anxiety the second time around. This is based on what I know can happen, and did happen. The first time around, I was pretty surprised that the recovery was far more hellish than anyone or any source, including Dr. Google, had prepared me for. Part of me wants to believe the second time won't be as bad, since at least I won't be having the sentinel node biopsy. I'm also hopeful that perhaps the pain from surgery #2 will just morph with the pain I'm still having from surgery #1, without adding more pain. But I'm also prepared for the possibility that my pain levels will go into exponential phase once the pain from surgery #1 and surgery #2 are combined. All in all, I think knowing the possible outcomes is giving me more anxiety this time around than the first. I feel like I am much more of a wreck than I should be over what I hope is pretty ho-hum surgery. Fear of the known.
Fortunately, I had a really great evening with two amazing friends and their families to distract me from my anxiety. And since I have five minutes before my food and drink ban sets in, I will go take a sleeping pill and hope that gets me through tomorrow.
When I was pregnant with my daughter, I was confident I would have a drug-free birth with no problem. After all, I have a high pain tolerance! I walked around on a broken foot for several months before realizing it was broken! I've tweaked muscles, torn cartilage, and done all sorts of mean and nasty things to my body and still soldiered on! But, despite this, once back labor set in, I said yes to the epidural faster than you can even say epidural. LOL. Unfortunately, immediately afterward, my blood pressure dropped, my daughter's heart rate dropped to 40, and she was vacuumed out in an emergency procedure just a few minutes shy of a C-section. Coincidence? Maybe. But when I was pregnant with my son, I was dead set against the epidural. Dead set. Of course, remembering the intense pain that came with labor that caused me to beg for drugs like I have never ever begged for them before, and knowing that this was not an option for me, made me dread labor the second time around. Fear of the known.
I feel the same way going into surgery #2 as I did going into childbirth #2; it's almost as if I feel more anxiety the second time around. This is based on what I know can happen, and did happen. The first time around, I was pretty surprised that the recovery was far more hellish than anyone or any source, including Dr. Google, had prepared me for. Part of me wants to believe the second time won't be as bad, since at least I won't be having the sentinel node biopsy. I'm also hopeful that perhaps the pain from surgery #2 will just morph with the pain I'm still having from surgery #1, without adding more pain. But I'm also prepared for the possibility that my pain levels will go into exponential phase once the pain from surgery #1 and surgery #2 are combined. All in all, I think knowing the possible outcomes is giving me more anxiety this time around than the first. I feel like I am much more of a wreck than I should be over what I hope is pretty ho-hum surgery. Fear of the known.
Fortunately, I had a really great evening with two amazing friends and their families to distract me from my anxiety. And since I have five minutes before my food and drink ban sets in, I will go take a sleeping pill and hope that gets me through tomorrow.
How to be an Amazing Friend
I invited two of my friends over to have a post-dinner, pre-surgery drink with me tomorrow night. My surgery is not until 2 PM on Wednesday, and I can't eat or drink past midnight, so I figured I might as well eat and drink, or at least drink, up until then. HA! Drinking is no fun alone, though, which makes me grateful to have friends who will drink with me. :) Then, one of the friends I invited offered to bring us dinner, and the other offered to bring drinks; how awesome is that? I feel like such a freeloading deadbeat! As I was briefing my husband on our plans for tomorrow, he mentioned how sweet my friends were, and I replied, 'Yeah, I should get cancer more often!' LOL.
But honestly, since this whole ordeal began, I've realized that I am friends with some super amazing people - both far away and local (and if you are reading this, chances are that you are one of them. :)) While it kind of sucks that it took a stupid cancer to drive this point home, it is better than getting to this point and realizing that in addition to having cancer, you have no friends. I have had some very intense moments in the past six weeks, which has changed my relationship for the better with a lot of people, including my husband (not that our relationship was bad, it is just a little different now... in a good way). I mean, even if I weren't having surgery on Wednesday, it would still be fun to have drinks with friends on Tuesday night, but it's not something I would normally arrange to do, so... silver linings.
And because this is the way my mind works, while I'm extremely grateful for the outpouring of support I've gotten, I'm also feeling kind of guilty. It reminds me of the Seinfeld episode where Jerry gives an unlimited gift certificate to a hair clinic to a friend with cancer, only it turns out the friend doesn't actually have cancer, but doesn't tell anyone because people were so generous when they thought he had cancer (though I can assure you that I really do have cancer lol). But my guilt is not just because I'm feeling like a freeloading deadbeat - some of it is because I am a recovering Catholic, ha - it is also because my experience now is making me feel like I might not have been the greatest friend/colleague in the past. For example, when I was in graduate school, one of the women I worked with a lot ( = not a close friend, but a close colleague, one with whom I talked to at length pretty much every day), told me that she had had breast cancer in her early 20s. She was in her 30s when we worked together, and was about 10 years post-cancer, but I realize in retrospect that I totally blew this off, not really realizing what a hugely traumatic ordeal it must be to have breast cancer when you are 24 with young children. I am almost 100% positive I probably said something stupid, considering that all I really remember when she told me this is that I was staring at her chest trying to figure out if her boobs were real. (And unfortunately, even though this might sound humorous, I'm embarrassed to admit that I am not kidding at all.)
I have since moved away, but this woman and I remain friends on Facebook. A few years ago, she posted that she had a recurrence of her breast cancer, and ended up opting to have a bilateral mastectomy. Although she isn't a close friend, she is actually the very first person I thought of when I was diagnosed with breast cancer. I actually went to great lengths to go back two years on Facebook to make sure I hadn't written anything stupid when she shared this news. Fortunately I hadn't, but at the same time, I didn't say or do any of the things that people have said or done for me that were the most helpful and comforting. And I regret that. Of course, I didn't know any better; how could I? At the same time, when you are the one going through the ordeal, you don't really stop to divide your friends into 'amazing friends' and 'people who could probably be amazing friends if they knew better.' Given that I'm pretty sure I fit into the latter category, I'm amazed at how many amazing friends I have. How do they know what is helpful and comforting when I myself don't even know it until someone does it?
I spent all day at work Skype-interviewing potential candidates for what is essentially the equivalent of my job. Jobs in academia, like many other things, are extremely competitive now. I am good at my job, but I am not sure I would have even been interviewed in this batch of candidates, nor am I sure I could even give a good answer to the questions we asked our candidates. I was hired with far less experience than a lot of these candidates, so I don't believe that extensive experience is everything. (As one of my gymnastics coaches used to tell me over and over, practice doesn't make perfect; practice makes permanent. Only perfect practice makes perfect.) At the same time, having experience obviously makes it much easier to say and do the right things - whether it be answering questions for a job interview or helping a friend as she deals with cancer.
So, as a public service, I thought I would share a list of 10 things I vow to do in the future to be an amazing friend, or at least work my way in the direction. Not that I am wishing crises on any of my friends, but if they should occur, I will try to do one or more of the following, which have certainly been a great comfort and help for me:
But honestly, since this whole ordeal began, I've realized that I am friends with some super amazing people - both far away and local (and if you are reading this, chances are that you are one of them. :)) While it kind of sucks that it took a stupid cancer to drive this point home, it is better than getting to this point and realizing that in addition to having cancer, you have no friends. I have had some very intense moments in the past six weeks, which has changed my relationship for the better with a lot of people, including my husband (not that our relationship was bad, it is just a little different now... in a good way). I mean, even if I weren't having surgery on Wednesday, it would still be fun to have drinks with friends on Tuesday night, but it's not something I would normally arrange to do, so... silver linings.
And because this is the way my mind works, while I'm extremely grateful for the outpouring of support I've gotten, I'm also feeling kind of guilty. It reminds me of the Seinfeld episode where Jerry gives an unlimited gift certificate to a hair clinic to a friend with cancer, only it turns out the friend doesn't actually have cancer, but doesn't tell anyone because people were so generous when they thought he had cancer (though I can assure you that I really do have cancer lol). But my guilt is not just because I'm feeling like a freeloading deadbeat - some of it is because I am a recovering Catholic, ha - it is also because my experience now is making me feel like I might not have been the greatest friend/colleague in the past. For example, when I was in graduate school, one of the women I worked with a lot ( = not a close friend, but a close colleague, one with whom I talked to at length pretty much every day), told me that she had had breast cancer in her early 20s. She was in her 30s when we worked together, and was about 10 years post-cancer, but I realize in retrospect that I totally blew this off, not really realizing what a hugely traumatic ordeal it must be to have breast cancer when you are 24 with young children. I am almost 100% positive I probably said something stupid, considering that all I really remember when she told me this is that I was staring at her chest trying to figure out if her boobs were real. (And unfortunately, even though this might sound humorous, I'm embarrassed to admit that I am not kidding at all.)
I have since moved away, but this woman and I remain friends on Facebook. A few years ago, she posted that she had a recurrence of her breast cancer, and ended up opting to have a bilateral mastectomy. Although she isn't a close friend, she is actually the very first person I thought of when I was diagnosed with breast cancer. I actually went to great lengths to go back two years on Facebook to make sure I hadn't written anything stupid when she shared this news. Fortunately I hadn't, but at the same time, I didn't say or do any of the things that people have said or done for me that were the most helpful and comforting. And I regret that. Of course, I didn't know any better; how could I? At the same time, when you are the one going through the ordeal, you don't really stop to divide your friends into 'amazing friends' and 'people who could probably be amazing friends if they knew better.' Given that I'm pretty sure I fit into the latter category, I'm amazed at how many amazing friends I have. How do they know what is helpful and comforting when I myself don't even know it until someone does it?
I spent all day at work Skype-interviewing potential candidates for what is essentially the equivalent of my job. Jobs in academia, like many other things, are extremely competitive now. I am good at my job, but I am not sure I would have even been interviewed in this batch of candidates, nor am I sure I could even give a good answer to the questions we asked our candidates. I was hired with far less experience than a lot of these candidates, so I don't believe that extensive experience is everything. (As one of my gymnastics coaches used to tell me over and over, practice doesn't make perfect; practice makes permanent. Only perfect practice makes perfect.) At the same time, having experience obviously makes it much easier to say and do the right things - whether it be answering questions for a job interview or helping a friend as she deals with cancer.
So, as a public service, I thought I would share a list of 10 things I vow to do in the future to be an amazing friend, or at least work my way in the direction. Not that I am wishing crises on any of my friends, but if they should occur, I will try to do one or more of the following, which have certainly been a great comfort and help for me:
- Bring them wine, send them wine, or send them a gift certificate to a wine shop.
- Drink wine with them when they feel it.
- Drink something else with them if wine makes them sick.
- Cook for them, or buy food and bring it to them, or send them a gift certificate for food.
- Arrange to have other people bring them food.
- Make sure their family has food, even if food makes them sick.
- Buy them frivolous stuff they don't need, but that makes them feel better.
- Go shopping with them when they want to buy frivolous stuff they don't need to make themselves feel better.
- Buy them stuff they do need that they don't know they need. (One of my friends bought me some super soft camisoles because she had another friend who had breast cancer who told her this would be helpful. Another friend gave me a giant body pillow because I couldn't sleep on my right side because of my hip or on my left side because of my breast. I didn't know how much I needed these things until I had them. :))
- Text, e-mail, or leave comments on their blog regularly.
I am sure I will have more to add as time goes on, but hopefully this captures my gratitude, and will help me to not be a deadbeat friend in the future. Until then, I am going to enjoy drinks with friends tomorrow night, and try to focus on the half of the glass that is full.
Thursday, June 11, 2015
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.
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:
- 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.
- 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.
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:
- 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.
- 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.
Tuesday, June 9, 2015
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:
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:
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.
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 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.
Thursday, June 4, 2015
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?
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...
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.
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