Need Help getting though what is hopefully a temporary life derailment
January 1, 2018 9:32 AM Subscribe
I need to figure out how to focus on what is important in the face of a health crisis.
I found a malignant tumor in my breast in September and had a lumpectomy two weeks ago. I started a new job this summer with a whole new set of responsibilities and skills that I needed to learn. And I was happy to face that challenge in order to keep my life going in the right direction. I changed my career about three years ago for the purpose of creating stability and sustainability in my life, and said goodbye to a design career that I loved and had much more a propensity for in order to do something that would be more practical in the long run. (My previous career was not sustainable in my eyes as the work was nearly 100% freelance, and I learned over the years that I am not a great candidate for the constant, low level uncertainty of freelancing).
So, I was under a great deal of stress already when I found a lump and it came back malignant. Thankfully I found it early, even though it's not the greatest form of breast cancer to have, it didn't spread and it was just barely invasive. My oncologist is now saying mostly good things about my prognosis. I was told originally that my lumpectomy might be followed by chemo and then a mastectomy, but now they are saying that because the invasive parts were so tiny, the cancer is "not quite Stage 1". So, if my genetic results come back negative I should start radiation in a month after fully healing from the surgery. If my genetic tests come back positive, then I should have a mastectomy without any radiation.
Since early December, per everything my surgeon had told me, I had been bracing myself for a 4-6 months of chemo (while still working), so this plan is a relief. But part of me is worried that this means the cancer will just come back sooner. (Also: I found out late last week, after waiting a month, that my genetic tests were denied by my insurance company for being sent to the wrong wrong lab. I need to get another blood draw this week for the genetic tests which is of course upsetting. As well, I already know that my insurance isn't going to cover much of this and I'm going to be paying off these medical bills for a long time).
If I could put it in symbolic terms, I feel like I've been climbing up an incline for most of my adult life, but definitely since the financial crisis, and now most pointedly during the past six months with the start of my new job. I used to have a dream that I was at the bottom of a swimming pool and that I was fine down there - I could breathe and I had a table to sit at and things to do. But I wanted to swim up to the top and get out of the pool and just couldn't. I couldn't push off with enough strength to propel myself up to the top of the pool. The weight of the water was too great. So I was just stuck down there. When I started this new job I had some experience in the field already, but I was honest with the people who interviewed me that it was just two years experience. They knew there would be a learning curve. And I was able to learn new things and my main source of stress was feeling the incline of that task, daily. But I was up to it and proud of myself for making a wise decision and managing to change my career radically in my late forties. But it was inclines or being stuck at the bottom of a pool for what looked like forever.
Then I found the lump in my breast and it turned out to be cancer and this completely derailed me. I still go to work everyday, but I'm the Woman With Cancer, now. Even though I rarely talk about it, and am still 'myself' when I'm there, laughing, working hard, etc. It's obvious I am struggling. Before I was able to mask my struggles. Now, I'm not as much. I feel like I'm stamped with Cancer on my forehead. That said, the the people at my job have been great. But in terms of my life, I don't even get to pretend that I'm fine. Or, if I do, everyone knows that I'm not. I get super tired at 2pm. When I get home, I eat and go to bed. It's all I can handle. Going to my mother's house for Christmas was insanely stressful for some reason and all I did was sit there and talk and eat for a few hours. But I needed to actually recover the next day. I'm at the very bottom of the hill, like a big rock came rolling down and took me with it. I feel weak and fragile. When I get home from work I cry. I don't even know why I am crying, I just need to. I have a fairly good prognosis, but things have moved so quickly that sometimes I have to remember that I already had surgery two weeks ago. My brain isn't processing all of this as quickly as it is happening. I'm still reeling from the fact that I even have (had-?) cancer.
A couple data points: I'm 50 and very healthy (I know how ridiculous that sounds coming from someone with cancer). I never get sick. I've been through a lot but I always get back up on my feet. I always recover. I walk everywhere each day. I quit drinking and smoking seven years ago. I do have some depression and anxiety, but am not taking anything for either right now. I'm not on any medication/s at all. I've lived with my significant other for twelve years and he is there for me 100% and I know it, which helps immensely.
My question is, how do I get through this? What is the practical (or impractical) thing I need to do to pull myself together and not be destroyed by this? I've never felt this scared before. It's not 'dying' that's scaring me, or even cancer, it's how quickly everything has fallen apart, and how quickly I've become this other person. How do I use this to get stronger instead of sliding progressively into weaker 'new normals', which is what it currently feels like I'm doing? If you went through something like this, what did you do? What was something you wished you had done differently? Was there a point where you felt ok again? I need advice. I've been though some very adverse things in my life and have been though what I would call extended periods of crisis before, but nothing ever as life threatening as cancer. More like, 'get yourself out of that situation and you will be safe' kinds of situations. But not physical illness. I need advice from people who can think straight right now, as I definitely can't.
Thank you.
I found a malignant tumor in my breast in September and had a lumpectomy two weeks ago. I started a new job this summer with a whole new set of responsibilities and skills that I needed to learn. And I was happy to face that challenge in order to keep my life going in the right direction. I changed my career about three years ago for the purpose of creating stability and sustainability in my life, and said goodbye to a design career that I loved and had much more a propensity for in order to do something that would be more practical in the long run. (My previous career was not sustainable in my eyes as the work was nearly 100% freelance, and I learned over the years that I am not a great candidate for the constant, low level uncertainty of freelancing).
So, I was under a great deal of stress already when I found a lump and it came back malignant. Thankfully I found it early, even though it's not the greatest form of breast cancer to have, it didn't spread and it was just barely invasive. My oncologist is now saying mostly good things about my prognosis. I was told originally that my lumpectomy might be followed by chemo and then a mastectomy, but now they are saying that because the invasive parts were so tiny, the cancer is "not quite Stage 1". So, if my genetic results come back negative I should start radiation in a month after fully healing from the surgery. If my genetic tests come back positive, then I should have a mastectomy without any radiation.
Since early December, per everything my surgeon had told me, I had been bracing myself for a 4-6 months of chemo (while still working), so this plan is a relief. But part of me is worried that this means the cancer will just come back sooner. (Also: I found out late last week, after waiting a month, that my genetic tests were denied by my insurance company for being sent to the wrong wrong lab. I need to get another blood draw this week for the genetic tests which is of course upsetting. As well, I already know that my insurance isn't going to cover much of this and I'm going to be paying off these medical bills for a long time).
If I could put it in symbolic terms, I feel like I've been climbing up an incline for most of my adult life, but definitely since the financial crisis, and now most pointedly during the past six months with the start of my new job. I used to have a dream that I was at the bottom of a swimming pool and that I was fine down there - I could breathe and I had a table to sit at and things to do. But I wanted to swim up to the top and get out of the pool and just couldn't. I couldn't push off with enough strength to propel myself up to the top of the pool. The weight of the water was too great. So I was just stuck down there. When I started this new job I had some experience in the field already, but I was honest with the people who interviewed me that it was just two years experience. They knew there would be a learning curve. And I was able to learn new things and my main source of stress was feeling the incline of that task, daily. But I was up to it and proud of myself for making a wise decision and managing to change my career radically in my late forties. But it was inclines or being stuck at the bottom of a pool for what looked like forever.
Then I found the lump in my breast and it turned out to be cancer and this completely derailed me. I still go to work everyday, but I'm the Woman With Cancer, now. Even though I rarely talk about it, and am still 'myself' when I'm there, laughing, working hard, etc. It's obvious I am struggling. Before I was able to mask my struggles. Now, I'm not as much. I feel like I'm stamped with Cancer on my forehead. That said, the the people at my job have been great. But in terms of my life, I don't even get to pretend that I'm fine. Or, if I do, everyone knows that I'm not. I get super tired at 2pm. When I get home, I eat and go to bed. It's all I can handle. Going to my mother's house for Christmas was insanely stressful for some reason and all I did was sit there and talk and eat for a few hours. But I needed to actually recover the next day. I'm at the very bottom of the hill, like a big rock came rolling down and took me with it. I feel weak and fragile. When I get home from work I cry. I don't even know why I am crying, I just need to. I have a fairly good prognosis, but things have moved so quickly that sometimes I have to remember that I already had surgery two weeks ago. My brain isn't processing all of this as quickly as it is happening. I'm still reeling from the fact that I even have (had-?) cancer.
A couple data points: I'm 50 and very healthy (I know how ridiculous that sounds coming from someone with cancer). I never get sick. I've been through a lot but I always get back up on my feet. I always recover. I walk everywhere each day. I quit drinking and smoking seven years ago. I do have some depression and anxiety, but am not taking anything for either right now. I'm not on any medication/s at all. I've lived with my significant other for twelve years and he is there for me 100% and I know it, which helps immensely.
My question is, how do I get through this? What is the practical (or impractical) thing I need to do to pull myself together and not be destroyed by this? I've never felt this scared before. It's not 'dying' that's scaring me, or even cancer, it's how quickly everything has fallen apart, and how quickly I've become this other person. How do I use this to get stronger instead of sliding progressively into weaker 'new normals', which is what it currently feels like I'm doing? If you went through something like this, what did you do? What was something you wished you had done differently? Was there a point where you felt ok again? I need advice. I've been though some very adverse things in my life and have been though what I would call extended periods of crisis before, but nothing ever as life threatening as cancer. More like, 'get yourself out of that situation and you will be safe' kinds of situations. But not physical illness. I need advice from people who can think straight right now, as I definitely can't.
Thank you.
I'm sorry this is happening to you. I think you have very high expectations of yourself and may not value your contributions as highly as you could. So along comes Cancer, and of course it shakes you up. Talk to the doctor's office or a hospital social worker and find a support group. I think it will help to have help to talk to who are experiencing similar stuff. I would find a therapist so you have someone to talk to about cancer and being scared and being pissed, tired, etc., because your friends will want to help but you might not feel okay going on about it.
You've been in your job several months and in the US, you have some protections for medical leave or adjustments at work if needed. People get sick, need a hand, and it should be there; don't feel as if you have to be too tough or that it's special treatment. It's just basic human decency and fairness.
Prioritize being well. Be selfish. Lean on people. You have been tough and self-sufficient and it's okay to ask for help and accept help.
posted by theora55 at 9:58 AM on January 1, 2018 [2 favorites]
You've been in your job several months and in the US, you have some protections for medical leave or adjustments at work if needed. People get sick, need a hand, and it should be there; don't feel as if you have to be too tough or that it's special treatment. It's just basic human decency and fairness.
Prioritize being well. Be selfish. Lean on people. You have been tough and self-sufficient and it's okay to ask for help and accept help.
posted by theora55 at 9:58 AM on January 1, 2018 [2 favorites]
I'm so sorry you are going through this. Having cancer does suck. It is shitty and scary. You are allowed to feel tired and to struggle.
Can you work from home at least part-time? If not, can you use some of your PTO now so that you have 4-day weeks, or get to leave early at least a few days a week? Figure out what you can do to make your life a little more manageable and support your healing.
Anxiety and depression, for me, make other problems worse. Talk to your primary care doc and see if it makes sense to resume medication, at least temporarily. If medication is impractical, consider meditation and/or gentle yoga to help ground yourself.
I once got a cancer diagnosis right at the time that I started a new job. I was up-front with my boss and got a LOT of time off to heal after surgery. If I had to do this again, once I returned I'd set very realistic goals with my boss for me to make progress and contribute without undermining my health. To me this makes it clear that I am not a malingerer, I care about my team and my job, and I want to do as much as I can while also taking care of myself. Then I have A Plan in place with my boss and can take some comfort in fulfilling the parameters of that plan, instead of feeling anxious that I'm not doing as well as I could if I were not sick. (I'd set goals that I could overshoot if things go well, and not goals that I'll crash and burn on if the smallest thing goes wrong, and an end date for The Plan where we set new goals in light of whatever the health situation is at that time).
When I was recovering I watched a lot of silly movies and spent time with good friends, and that helped too.
posted by bunderful at 9:59 AM on January 1, 2018 [3 favorites]
Can you work from home at least part-time? If not, can you use some of your PTO now so that you have 4-day weeks, or get to leave early at least a few days a week? Figure out what you can do to make your life a little more manageable and support your healing.
Anxiety and depression, for me, make other problems worse. Talk to your primary care doc and see if it makes sense to resume medication, at least temporarily. If medication is impractical, consider meditation and/or gentle yoga to help ground yourself.
I once got a cancer diagnosis right at the time that I started a new job. I was up-front with my boss and got a LOT of time off to heal after surgery. If I had to do this again, once I returned I'd set very realistic goals with my boss for me to make progress and contribute without undermining my health. To me this makes it clear that I am not a malingerer, I care about my team and my job, and I want to do as much as I can while also taking care of myself. Then I have A Plan in place with my boss and can take some comfort in fulfilling the parameters of that plan, instead of feeling anxious that I'm not doing as well as I could if I were not sick. (I'd set goals that I could overshoot if things go well, and not goals that I'll crash and burn on if the smallest thing goes wrong, and an end date for The Plan where we set new goals in light of whatever the health situation is at that time).
When I was recovering I watched a lot of silly movies and spent time with good friends, and that helped too.
posted by bunderful at 9:59 AM on January 1, 2018 [3 favorites]
I would find a therapist so you have someone to talk to about cancer and being scared and being pissed, tired, etc,
I want to signal boost this. After I was diagnosed with a chronic illness a few years back, therapy helped tremendously. It was just nice to have someone to vent to who wasn’t emotionally invested and could help me make sense of it all. I’m sorry that you are going through this and wish you the best on your recovery and persistence through it all.
posted by johnxlibris at 10:11 AM on January 1, 2018 [4 favorites]
I want to signal boost this. After I was diagnosed with a chronic illness a few years back, therapy helped tremendously. It was just nice to have someone to vent to who wasn’t emotionally invested and could help me make sense of it all. I’m sorry that you are going through this and wish you the best on your recovery and persistence through it all.
posted by johnxlibris at 10:11 AM on January 1, 2018 [4 favorites]
I was diagnosed with multiple myeloma a little over a year ago. I had eight months of chemotherapy and am in remission. I’m on maintenance chemotherapy now, but this cancer is considered incurable. A few things that may help.
You are still in early days. Yes, you’re the woman with cancer now and that sucks, but this will dissipate with time as you and everyone else get used to the new normal. It was months before I had a single waking moment when I wasn’t thinking about having cancer, but now I have hours when I almost forget about it.
I found it super helpful to take control as much as possible. Unless your oncologist is really unusual, he/she is an expert on conventional treatment and not on the many things you can do to improve your outlook, including stuff like diet, exercise, and meditation. I recommend the book Anticancer: A New Way of Life, written by a doctor/researcher. There is also a documentary about him on Netflix, which I forget the name of. He has passed away, but he lived much longer than expected with brain cancer. I also saw a naturopath who specializes in cancer. Lots of people automatically dismiss that as woo, but when I checked PubMed, everything he recommended was supported by peer-reviewed research. (Note I’m not talking about alternative instead of conventional treatment, but in addition to - and I cleared everything with my oncologist, who told me many times how surprised she was at how well I was doing.)
If reading is helpful to you, there are lots of really great books out there besides the one I mentioned. Cancer Vixen is a great graphic novel by a woman who survived breast cancer.
Best of luck to you.
posted by FencingGal at 10:11 AM on January 1, 2018 [3 favorites]
You are still in early days. Yes, you’re the woman with cancer now and that sucks, but this will dissipate with time as you and everyone else get used to the new normal. It was months before I had a single waking moment when I wasn’t thinking about having cancer, but now I have hours when I almost forget about it.
I found it super helpful to take control as much as possible. Unless your oncologist is really unusual, he/she is an expert on conventional treatment and not on the many things you can do to improve your outlook, including stuff like diet, exercise, and meditation. I recommend the book Anticancer: A New Way of Life, written by a doctor/researcher. There is also a documentary about him on Netflix, which I forget the name of. He has passed away, but he lived much longer than expected with brain cancer. I also saw a naturopath who specializes in cancer. Lots of people automatically dismiss that as woo, but when I checked PubMed, everything he recommended was supported by peer-reviewed research. (Note I’m not talking about alternative instead of conventional treatment, but in addition to - and I cleared everything with my oncologist, who told me many times how surprised she was at how well I was doing.)
If reading is helpful to you, there are lots of really great books out there besides the one I mentioned. Cancer Vixen is a great graphic novel by a woman who survived breast cancer.
Best of luck to you.
posted by FencingGal at 10:11 AM on January 1, 2018 [3 favorites]
Oh, marimeko. Big hugs. I’ve been where you are - some days I am still where you are, and my breast cancer diagnosis was in 2015. The lessons we learn the moment we hear the news - the betrayal by our own bodies, the utter unpredictability of life and the truth that we have zero control over what happens to us - those lessons can’t be unlearned. Cancer changed me forever.
I started a new job about six weeks after completing treatment. I had chemo followed by 9 more months of herceptin infusions, a drug that targeted my specific kind of tumor. For over a year this had dominated my life. I didn’t know how to not have cancer be the main thing about me. I had no recollection of what life was like without a black cloud of worry over me every second. I was in a constant state of low level terror. Trying to get situated in a new career with that going on in the background is utterly exhausting. Of course you’re exhausted! Life is hard enough without adding persistent existential dread to the mix that we’re supposed to pretend doesn’t even exist. Breast cancer in particular has such a weird peppy image - the pink nonsense, young pretty bald ladies giving each other hugs, etc. - that people without direct experience don’t really seem to realize it’s a horrifying experience from start to finish. I am not going on some kind of joyful bullshit journey of self-discovery.
So, the good news: this past summer, I noticed I wasn’t terrified all the time anymore. I started to feel more like I remember myself feeling. I’ve got my buoyancy and resilience back. And I’m not really sure how it happened. I went to a few therapy sessions, which seemed to only make me mad at the time - I ranted to my husband “she wants to help me change my feelings“ and he said, “what did you expect, that she’d tell you she had a cure for cancer?” I realized that is what I wanted. I wanted it to have never happened to me, but short of that I wanted somebody to tell me definitively I would never have to think about it again. And I realized once and for all that nobody was going to tell me that, and I’d just have to start figuring out how to get through the days.
Yoga helps me, as does going to Young Survival Coalition meetings. (I’m 41, so on the cusp of what they define as young, but I go anyway and we do have several members over 50.) All along, nothing has ever helped as much as talking to other patients and survivors. Nobody gets it until it happens to you. Even the people who love us the most, they can’t understand. It’s a lonely place to be, and we are fortunate as breast cancer survivors that there are many, many women out there who have shared our experience. Try to find a survivors support group and go even if you don’t want to. After two years I still try to talk myself out of going to the meetings but I’m always so, so glad I went.
I think in the end, though, the biggest factor is time. You’re going to get better emotionally, but it won’t be tomorrow. So be kind to yourself. Allow yourself to feel shitty and mad and scared and know it is absolutely, completely normal and doesn’t mean you’re broken forever. You’re still you, I promise. Maybe a slightly different you, but you’re going to be okay.
Please feel free to memail me at any time.
posted by something something at 10:12 AM on January 1, 2018 [8 favorites]
I started a new job about six weeks after completing treatment. I had chemo followed by 9 more months of herceptin infusions, a drug that targeted my specific kind of tumor. For over a year this had dominated my life. I didn’t know how to not have cancer be the main thing about me. I had no recollection of what life was like without a black cloud of worry over me every second. I was in a constant state of low level terror. Trying to get situated in a new career with that going on in the background is utterly exhausting. Of course you’re exhausted! Life is hard enough without adding persistent existential dread to the mix that we’re supposed to pretend doesn’t even exist. Breast cancer in particular has such a weird peppy image - the pink nonsense, young pretty bald ladies giving each other hugs, etc. - that people without direct experience don’t really seem to realize it’s a horrifying experience from start to finish. I am not going on some kind of joyful bullshit journey of self-discovery.
So, the good news: this past summer, I noticed I wasn’t terrified all the time anymore. I started to feel more like I remember myself feeling. I’ve got my buoyancy and resilience back. And I’m not really sure how it happened. I went to a few therapy sessions, which seemed to only make me mad at the time - I ranted to my husband “she wants to help me change my feelings“ and he said, “what did you expect, that she’d tell you she had a cure for cancer?” I realized that is what I wanted. I wanted it to have never happened to me, but short of that I wanted somebody to tell me definitively I would never have to think about it again. And I realized once and for all that nobody was going to tell me that, and I’d just have to start figuring out how to get through the days.
Yoga helps me, as does going to Young Survival Coalition meetings. (I’m 41, so on the cusp of what they define as young, but I go anyway and we do have several members over 50.) All along, nothing has ever helped as much as talking to other patients and survivors. Nobody gets it until it happens to you. Even the people who love us the most, they can’t understand. It’s a lonely place to be, and we are fortunate as breast cancer survivors that there are many, many women out there who have shared our experience. Try to find a survivors support group and go even if you don’t want to. After two years I still try to talk myself out of going to the meetings but I’m always so, so glad I went.
I think in the end, though, the biggest factor is time. You’re going to get better emotionally, but it won’t be tomorrow. So be kind to yourself. Allow yourself to feel shitty and mad and scared and know it is absolutely, completely normal and doesn’t mean you’re broken forever. You’re still you, I promise. Maybe a slightly different you, but you’re going to be okay.
Please feel free to memail me at any time.
posted by something something at 10:12 AM on January 1, 2018 [8 favorites]
Breast cancer survivor here - I really think that we survivors deal with honest-to-god PTSD. Therapy has helped me tremendously, specifically, finding a therapist who has experience with cancer survivors.
I'm spiritual-but-not-religious and following an integral spirituality path has benefited me. Definitely YMMV.
I agree with something something that "tincture of time" has helped me a lot, too. As the cancer experience recedes into my rear view mirror, I feel better and stronger and in control. A cancer diagnosis is a major, major blow to one's feeling of health, autonomy, and trust in one's body not to betray you. And the fluffy pink bullshit that surrounds a breast cancer diagnosis, in particular, is Not Helpful At All. Welcome to Cancerland by Barbara Ehrenreich was a needed palate-cleanser for me, regarding that.
posted by Rosie M. Banks at 10:18 AM on January 1, 2018 [1 favorite]
I'm spiritual-but-not-religious and following an integral spirituality path has benefited me. Definitely YMMV.
I agree with something something that "tincture of time" has helped me a lot, too. As the cancer experience recedes into my rear view mirror, I feel better and stronger and in control. A cancer diagnosis is a major, major blow to one's feeling of health, autonomy, and trust in one's body not to betray you. And the fluffy pink bullshit that surrounds a breast cancer diagnosis, in particular, is Not Helpful At All. Welcome to Cancerland by Barbara Ehrenreich was a needed palate-cleanser for me, regarding that.
posted by Rosie M. Banks at 10:18 AM on January 1, 2018 [1 favorite]
Response by poster: Your answers are amazing and helping me so much! Thank you!
posted by marimeko at 11:01 AM on January 1, 2018 [1 favorite]
posted by marimeko at 11:01 AM on January 1, 2018 [1 favorite]
Perspective is important here. Right now, with everything changing so fast - even for the good - it's very unsettling. Just when you think you've resigned yourself to a particular course of treatment, it changes. That's a tailor-made prescription for feeling even more out of control of your body and your fate than the initial diagnosis. It will settle down, though, and the anticipation is in many ways worse than the reality of treatment.
Of course you're exhausted. You just had surgery two weeks ago. (My rule of thumb is one month of recovery for every hour of surgery.) But you're healthy and in good shape. And no, it doesn't sound weird to describe someone with cancer as healthy. Those two things are unrelated.
I've been through a lot but I always get back up on my feet.
This is your North Star. Make it your motto/self-affirmation and don't lose sight of it. It will keep everything in perspective for you. When I was diagnosed with two different cancers in less than 12 months, it was the memory of having gotten through graduate school that got me through: I didn't let the turkeys get me down then, and I wasn't going to let them get me down this time either.
posted by DrGail at 11:46 AM on January 1, 2018 [2 favorites]
Of course you're exhausted. You just had surgery two weeks ago. (My rule of thumb is one month of recovery for every hour of surgery.) But you're healthy and in good shape. And no, it doesn't sound weird to describe someone with cancer as healthy. Those two things are unrelated.
I've been through a lot but I always get back up on my feet.
This is your North Star. Make it your motto/self-affirmation and don't lose sight of it. It will keep everything in perspective for you. When I was diagnosed with two different cancers in less than 12 months, it was the memory of having gotten through graduate school that got me through: I didn't let the turkeys get me down then, and I wasn't going to let them get me down this time either.
posted by DrGail at 11:46 AM on January 1, 2018 [2 favorites]
This may or may not be helpful, so take it or ignore it as it seems best to you; I say it only because the idea of being a "woman with cancer" itself seems powerfully harmful to you. If I'm reading your post correctly (and I may not be, as you obviously didn't recite all the details, so, again...use as appropriate), you're getting an aggressive form of treatment. Many people would not classify "noninvasive breast cancer" or "stage zero" breast cancer, e.g., DCIS, as cancer at all. In prior decades, you would have been unlikely to have been diagnosed or treated for it at all, and you would very probably have been fine. So the concept of yourself as a "woman with cancer" is, in some ways, a human creation, a hypothesis. It's not the universe's ineluctable judgment on you.
Nearly ten years ago, I had most of a major organ removed because of a premalignant lesion. The medical treatment for this type of lesion tends to the aggressive because of the unusually high mortality rates for cancer in this organ. But there was some possibility that it would never progress (there are few studies because doctors have not been willing to leave it untreated). For a number of reasons too tedious to go into here, I chose to have the surgery. They found dyplasia in the growth. But I've never wanted to think of myself as someone who had, or could have had, cancer. It's just too powerful a concept to let into the self. I felt lousy after the surgery. The night after, literally, for the first time in my life, I could understand on a visceral level why someone would choose death over ongoing pain. And unless something went horribly wrong with your lumpectomy, I was in the hospital way longer than you and missed work way longer than you (months!). I say this not to "compete" but to let you know that now I hardly even think about it. There are occasional, uh, functional issues, but otherwise, I just go about my life. Surgery is serious business and your body takes it seriously. A cancer diagnosis and your psychology, ditto. Don't expect yourself to be fine now, because you won't be. Don't get mad at yourself for not getting better faster. But how you feel now is NOT how you're going to feel five years from now.
posted by praemunire at 12:00 PM on January 1, 2018 [2 favorites]
Nearly ten years ago, I had most of a major organ removed because of a premalignant lesion. The medical treatment for this type of lesion tends to the aggressive because of the unusually high mortality rates for cancer in this organ. But there was some possibility that it would never progress (there are few studies because doctors have not been willing to leave it untreated). For a number of reasons too tedious to go into here, I chose to have the surgery. They found dyplasia in the growth. But I've never wanted to think of myself as someone who had, or could have had, cancer. It's just too powerful a concept to let into the self. I felt lousy after the surgery. The night after, literally, for the first time in my life, I could understand on a visceral level why someone would choose death over ongoing pain. And unless something went horribly wrong with your lumpectomy, I was in the hospital way longer than you and missed work way longer than you (months!). I say this not to "compete" but to let you know that now I hardly even think about it. There are occasional, uh, functional issues, but otherwise, I just go about my life. Surgery is serious business and your body takes it seriously. A cancer diagnosis and your psychology, ditto. Don't expect yourself to be fine now, because you won't be. Don't get mad at yourself for not getting better faster. But how you feel now is NOT how you're going to feel five years from now.
posted by praemunire at 12:00 PM on January 1, 2018 [2 favorites]
I don't have advice to offer, but just want to commend you on several incredible strengths you mentioned in passing!
You just made one hell of a well-timed career move. How perfect to have just increased the stability of your income (and possibly of your insurance situation as well??) JUST before a cancer diagnosis. That was so wise! Plus, you found the lump so early your cancer is already being treated at not quite Stage I--really perceptive. It's clear you're paying attention to your body and taking great care of your health. (Congrats on quitting smoking as well!) You are in the act of getting through this, and you are doing it well.
posted by snorkmaiden at 2:06 PM on January 1, 2018 [3 favorites]
You just made one hell of a well-timed career move. How perfect to have just increased the stability of your income (and possibly of your insurance situation as well??) JUST before a cancer diagnosis. That was so wise! Plus, you found the lump so early your cancer is already being treated at not quite Stage I--really perceptive. It's clear you're paying attention to your body and taking great care of your health. (Congrats on quitting smoking as well!) You are in the act of getting through this, and you are doing it well.
posted by snorkmaiden at 2:06 PM on January 1, 2018 [3 favorites]
I have heard good things about When Things Fall Apart: Heart Advice for Difficult Times. Admittedly the very phrase "heart advice" wants to make me gag but the book is supposedly useful. Here's one review: "she begins the book by telling the story of how her marriage ended, when her husband drove up to their house one day and announced that he had met someone else, had been having an affair and their marriage was over. I was feeling rather bitter that day because of my own situation and remember thinking, oh great. She's going to go on about how Buddha Lovingkindness flooded her soul at that moment and she just released the whole thing and her soul became lighter and a chorus of Tibetan angels started chanting and it was so great blahblah (like I said, I was bitter). But instead she said she was still for a moment, and it was one of those moments where you can't for the life of you tell if it was a second long or an hour long, and then she picked up a rock and threw it at him. It was then that I knew that this was my kind of nun, and decided to read on."
I have not been in your situation. I can't claim to know how you feel. But a couple of times I thought my kid was going to die and it was terrifying. You wrote, "What is the practical (or impractical) thing I need to do to pull myself together and not be destroyed by this?" In my experience, sometimes you need to acknowledge that right now you are not totally pulled together; you cannot be totally pulled together. The circumstances don't allow for it. They will later but not at the moment. That's okay. That's how it works. That doesn't mean you will be destroyed. This thing will not destroy you. You have a long history of being strong, resilient, and resourceful. Right now, just acknowledging how sucky everything feels is a form of self-love and self-care. As others have said, treat yourself as kindly, as lovingly, as gently, and as non-judgmentally as you can. You sound amazing. Your partner sounds amazing. Your situation sounds shitty. It will not be shitty forever. Rest, good food, funny movies, back rubs, etc. are all your friends. We are here, too. We are rooting for you.
posted by Bella Donna at 4:59 PM on January 1, 2018 [1 favorite]
I have not been in your situation. I can't claim to know how you feel. But a couple of times I thought my kid was going to die and it was terrifying. You wrote, "What is the practical (or impractical) thing I need to do to pull myself together and not be destroyed by this?" In my experience, sometimes you need to acknowledge that right now you are not totally pulled together; you cannot be totally pulled together. The circumstances don't allow for it. They will later but not at the moment. That's okay. That's how it works. That doesn't mean you will be destroyed. This thing will not destroy you. You have a long history of being strong, resilient, and resourceful. Right now, just acknowledging how sucky everything feels is a form of self-love and self-care. As others have said, treat yourself as kindly, as lovingly, as gently, and as non-judgmentally as you can. You sound amazing. Your partner sounds amazing. Your situation sounds shitty. It will not be shitty forever. Rest, good food, funny movies, back rubs, etc. are all your friends. We are here, too. We are rooting for you.
posted by Bella Donna at 4:59 PM on January 1, 2018 [1 favorite]
On re-reading, you mentioned the genetic test. I hope you'll come back and share some news. If you can't, no worries, but I have had you in my thoughts all day.
posted by theora55 at 5:20 PM on January 1, 2018 [2 favorites]
posted by theora55 at 5:20 PM on January 1, 2018 [2 favorites]
You're experiencing/processing ptsd from the surgery. This Is A Thing.
Acupuncture, walks in nature, Kundalini Yoga (just do what you can safely, it's most important to be in the room and doing the breathing exercises) and massage are all great somatic techniques to work through trauma and release it. Turns out you retain these types of experiences in your musculature, so any activity that balances your body and gets you moving is A++.
posted by jbenben at 8:30 PM on January 1, 2018 [2 favorites]
Acupuncture, walks in nature, Kundalini Yoga (just do what you can safely, it's most important to be in the room and doing the breathing exercises) and massage are all great somatic techniques to work through trauma and release it. Turns out you retain these types of experiences in your musculature, so any activity that balances your body and gets you moving is A++.
posted by jbenben at 8:30 PM on January 1, 2018 [2 favorites]
Remember, your immune system has been overclocked while dealing with the cancer, and has potentially been using up every bit of spare resource it can get from you. Many people in your situation lose weight whether they are trying to or not. Your immune system has likely been giving you low blood sugar. Both your brain and your immune system use require a lot of resources, and it sounds to me like your brain has been getting less resources than it needs.
And you had surgery. Recuperating from that also takes a ton of physiological resources. That's going to be using up more energy.
You had the surgery two weeks ago, which means you are at the stage where you have started recovery and probably are taking things on again. It's been a whole two weeks - I bet you think you ought to be better by now, and energetic and thinking clearly. But two weeks is not long.
Right now it would be surprising if you were not feeling over extended, exhausted and overwhelmed. Your body wants you to be in recluse mode while you are healing. Extra sleep, predictable environment, no decisions.
You will probably feel better as time goes on. The tumour is not longer eating up your energy. A month from your surgery your energy will no longer be sapped by recuperating.
It's time perhaps to start thinking about how to get an identity other than The Woman with Cancer. Just pick an identity that you would like and start living it. You could be The Woman Who has Star Trek Memorabilia in Her Cubicle. Or The Woman Who Turns Out to Be an Expert on Classical Music. You don't have to be something new to you. Find something that makes you feel good and do it. Do it at work, or talk about it at work, so that you show other people your other identity.
There are a lot of lifestyle changes that you can make, post cancer, to limit the possibility or a recurrence. But these things - like starting the habit of eating better, or finding strategies to live frugally so you can pay off your medical bills - do not have to been seen from the perspective of I Have Cancer. They are good things to do regardless of your cancer status. You might want to make a habit of bringing fresh succulent fruit to work for your snack - give yourself the good stuff, as a treat! Don't mention that you are eating healthily, or have started an indoor garden as a result of cancer. Focus on the fact that these things are nurturing yourself, and you need to do that regardless of test results or anything else.
posted by Jane the Brown at 8:09 AM on January 2, 2018 [2 favorites]
And you had surgery. Recuperating from that also takes a ton of physiological resources. That's going to be using up more energy.
You had the surgery two weeks ago, which means you are at the stage where you have started recovery and probably are taking things on again. It's been a whole two weeks - I bet you think you ought to be better by now, and energetic and thinking clearly. But two weeks is not long.
Right now it would be surprising if you were not feeling over extended, exhausted and overwhelmed. Your body wants you to be in recluse mode while you are healing. Extra sleep, predictable environment, no decisions.
You will probably feel better as time goes on. The tumour is not longer eating up your energy. A month from your surgery your energy will no longer be sapped by recuperating.
It's time perhaps to start thinking about how to get an identity other than The Woman with Cancer. Just pick an identity that you would like and start living it. You could be The Woman Who has Star Trek Memorabilia in Her Cubicle. Or The Woman Who Turns Out to Be an Expert on Classical Music. You don't have to be something new to you. Find something that makes you feel good and do it. Do it at work, or talk about it at work, so that you show other people your other identity.
There are a lot of lifestyle changes that you can make, post cancer, to limit the possibility or a recurrence. But these things - like starting the habit of eating better, or finding strategies to live frugally so you can pay off your medical bills - do not have to been seen from the perspective of I Have Cancer. They are good things to do regardless of your cancer status. You might want to make a habit of bringing fresh succulent fruit to work for your snack - give yourself the good stuff, as a treat! Don't mention that you are eating healthily, or have started an indoor garden as a result of cancer. Focus on the fact that these things are nurturing yourself, and you need to do that regardless of test results or anything else.
posted by Jane the Brown at 8:09 AM on January 2, 2018 [2 favorites]
I was diagnosed with heart failure last year at 36. Not the same as cancer, but still life altering and for the rest of my life. You have to accept your new normal, you really do. You have to realize your old standards was for someone not recovering from surgery/not doing chemo/radiation, etc. Realize that your daily chores may have to be spread over 3 days. Realize that you don't HAVE to put on a happy face at work because people will understand, because you have cancer. You might start to feel better in a few months or a year, and then you can get back to your "old self." But FOR NOW you have to cut yourself some slack. You are giving yourself a hard time, but I promise no one else is, not right now.
posted by misanthropicsarah at 2:20 PM on January 2, 2018 [2 favorites]
posted by misanthropicsarah at 2:20 PM on January 2, 2018 [2 favorites]
I had breast cancer that was initially diagnosed as DCIS, then stage 1 in 2015. It was really awful! I am so sorry you're going through this ordeal too.
OP: I had been bracing myself for a 4-6 months of chemo (while still working), so this plan is a relief. But part of me is worried that this means the cancer will just come back sooner.
So, I ended up having chemo (taxol+herceptin, the latter not technically chemo) because it sounds like I ended up on the other side of the clinical divide than you. The bad news: Chemo doesn't actually help you feel like you're going to be spared recurrence! It doesn't make the worry go away. You'd just be worried that it was the wrong kind of chemo, or that you didn't get enough or a million other ways that things might go wrong. The good news: If your oncologist is sounding positive, that's a really good sign. They are not in the habit of being like, "Ehhhhhh, let's just skip this one" if the odds are not really in your favor. Take the good things the oncologist is saying and hold them close.
I mean, that's easier said than done. Did I still cry the other day about being worried about dying? I did! And I'm more than two years out. But I don't cry every day, or every week, or every month anymore, so like many other posters, I urge you to have faith that time will make this easier. Your brain will catch up.
(Also: I found out late last week, after waiting a month, that my genetic tests were denied by my insurance company for being sent to the wrong wrong lab. I need to get another blood draw this week for the genetic tests which is of course upsetting. As well, I already know that my insurance isn't going to cover much of this and I'm going to be paying off these medical bills for a long time).
Insurance companies seem to routinely deny genetic testing in this way. Here's a previous question (from something something, who commented above.) Insurance denied mine too; they relented when I argued. It's worth pursuing getting your insurance to pay or at least getting the fee reduced.
I'm at the very bottom of the hill, like a big rock came rolling down and took me with it. I feel weak and fragile.
Oh man, yes. The thing I repeated to my therapist about a million times was that I just didn't feel *resilient* anymore. Things I would have taken in stride threw me for days; frustrating situations immediately became uncontrollable tears. It was so hard.
I'd also nth finding a therapist (preferably with cancer experience). I found mine through my medical oncologist's office, and I really, really, really needed her even though I probably went to fewer than ten sessions. I just felt like my experience was so strange and out there — no one I knew could relate — and it was incredibly worthwhile and validating to have someone to vent to who could put allllllll my worries and frustrations and terrors in context. (Mostly it was, "Yeah, this is normal for cancer treatment," which sounds so simplistic and dumb, and was just about the most profound thing I could have heard at the time.) I had never really been to therapy before, and honestly, haven't been since, so it doesn't have to be a lifelong commitment or anything. I also occasionally used an anti-anxiety medication, which I never had before.
Also, OP, I don't think there's anything about your story that suggests, as a previous poster suggests, that your treatment was especially "an aggressive form of treatment" or in any way incorrect. Your treatment sounds exactly right. The notion that DCIS is "not cancer" is a very theoretical one; it's been inaccurately portrayed in the popular press (in medical contexts, there is debate about whether they should rename it, and how to better analyze it to predict its future behavior. Hardly anyone is suggesting changing how we treat it right now because no one knows how to separate dangerous DCIS from benign. There is literally one study in the US [Hwang; the COMET study out of Duke; it just started recently] that is having a select group of women who have that diagnosis watch and wait [many women with DCIS do not qualify for the study, for example those with a palpable lump or those with grade 3 DCIS; DCIS is not a single diagnosis]. No one knows what the results of the study will be yet.) The standard of care for DCIS is lumpectomy and radiation or mastectomy. Please don't feel like you did anything wrong by having surgery and about having radiation.
I mean, if Not Really Cancer feels better to you, by all means, run with that. But after I'd already had the surgery, after my life had been disrupted so much, after I went back and made sure there is no medical professional who would have ever suggested a different treatment course even for "just DCIS," reading simplistic or incorrect "it's not even cancer" stuff made me feel invalidated, frustrated, and extremely sad.
What I mainly did to get through it was ... watch TV? And read light page-turners. That sounds so silly, but I think my brain just needed something to do that wasn't cancer. (The Unbreakable Kimmy Schmidt and Elementary were the right balance between amusing and unsaccharine. I found myself furious at the people from Modern Family that they were all so close and happy and cancer-free; at least the people from Elementary had real problems.)
Happy to talk over MeMail.
posted by purpleclover at 11:37 AM on January 9, 2018 [3 favorites]
OP: I had been bracing myself for a 4-6 months of chemo (while still working), so this plan is a relief. But part of me is worried that this means the cancer will just come back sooner.
So, I ended up having chemo (taxol+herceptin, the latter not technically chemo) because it sounds like I ended up on the other side of the clinical divide than you. The bad news: Chemo doesn't actually help you feel like you're going to be spared recurrence! It doesn't make the worry go away. You'd just be worried that it was the wrong kind of chemo, or that you didn't get enough or a million other ways that things might go wrong. The good news: If your oncologist is sounding positive, that's a really good sign. They are not in the habit of being like, "Ehhhhhh, let's just skip this one" if the odds are not really in your favor. Take the good things the oncologist is saying and hold them close.
I mean, that's easier said than done. Did I still cry the other day about being worried about dying? I did! And I'm more than two years out. But I don't cry every day, or every week, or every month anymore, so like many other posters, I urge you to have faith that time will make this easier. Your brain will catch up.
(Also: I found out late last week, after waiting a month, that my genetic tests were denied by my insurance company for being sent to the wrong wrong lab. I need to get another blood draw this week for the genetic tests which is of course upsetting. As well, I already know that my insurance isn't going to cover much of this and I'm going to be paying off these medical bills for a long time).
Insurance companies seem to routinely deny genetic testing in this way. Here's a previous question (from something something, who commented above.) Insurance denied mine too; they relented when I argued. It's worth pursuing getting your insurance to pay or at least getting the fee reduced.
I'm at the very bottom of the hill, like a big rock came rolling down and took me with it. I feel weak and fragile.
Oh man, yes. The thing I repeated to my therapist about a million times was that I just didn't feel *resilient* anymore. Things I would have taken in stride threw me for days; frustrating situations immediately became uncontrollable tears. It was so hard.
I'd also nth finding a therapist (preferably with cancer experience). I found mine through my medical oncologist's office, and I really, really, really needed her even though I probably went to fewer than ten sessions. I just felt like my experience was so strange and out there — no one I knew could relate — and it was incredibly worthwhile and validating to have someone to vent to who could put allllllll my worries and frustrations and terrors in context. (Mostly it was, "Yeah, this is normal for cancer treatment," which sounds so simplistic and dumb, and was just about the most profound thing I could have heard at the time.) I had never really been to therapy before, and honestly, haven't been since, so it doesn't have to be a lifelong commitment or anything. I also occasionally used an anti-anxiety medication, which I never had before.
Also, OP, I don't think there's anything about your story that suggests, as a previous poster suggests, that your treatment was especially "an aggressive form of treatment" or in any way incorrect. Your treatment sounds exactly right. The notion that DCIS is "not cancer" is a very theoretical one; it's been inaccurately portrayed in the popular press (in medical contexts, there is debate about whether they should rename it, and how to better analyze it to predict its future behavior. Hardly anyone is suggesting changing how we treat it right now because no one knows how to separate dangerous DCIS from benign. There is literally one study in the US [Hwang; the COMET study out of Duke; it just started recently] that is having a select group of women who have that diagnosis watch and wait [many women with DCIS do not qualify for the study, for example those with a palpable lump or those with grade 3 DCIS; DCIS is not a single diagnosis]. No one knows what the results of the study will be yet.) The standard of care for DCIS is lumpectomy and radiation or mastectomy. Please don't feel like you did anything wrong by having surgery and about having radiation.
I mean, if Not Really Cancer feels better to you, by all means, run with that. But after I'd already had the surgery, after my life had been disrupted so much, after I went back and made sure there is no medical professional who would have ever suggested a different treatment course even for "just DCIS," reading simplistic or incorrect "it's not even cancer" stuff made me feel invalidated, frustrated, and extremely sad.
What I mainly did to get through it was ... watch TV? And read light page-turners. That sounds so silly, but I think my brain just needed something to do that wasn't cancer. (The Unbreakable Kimmy Schmidt and Elementary were the right balance between amusing and unsaccharine. I found myself furious at the people from Modern Family that they were all so close and happy and cancer-free; at least the people from Elementary had real problems.)
Happy to talk over MeMail.
posted by purpleclover at 11:37 AM on January 9, 2018 [3 favorites]
Response by poster: Thank you all so very much for your incredibly thoughtful answers. This Ask is actually helping me sort out all of this better than anything else right now! Thank you for helping me feel way less alone. I'm in a much better mental place than I was last week : )
I start radiation in 2-4 weeks, once (and if) my genetic test come back negative. The reason they are treating my cancer somewhat aggressively is because my tumor was large and had two small areas of invasiveness, was high grade and triple negative. My mom had, and survived, breast cancer over 30 years ago, though, so I won't be at all surprised if the genetic test come back positive, in which case I will have a mastectomy. I'm fine with all of it. Just the overall cancer threat forever hovering that is so overwhelming.
posted by marimeko at 5:11 PM on January 9, 2018 [1 favorite]
I start radiation in 2-4 weeks, once (and if) my genetic test come back negative. The reason they are treating my cancer somewhat aggressively is because my tumor was large and had two small areas of invasiveness, was high grade and triple negative. My mom had, and survived, breast cancer over 30 years ago, though, so I won't be at all surprised if the genetic test come back positive, in which case I will have a mastectomy. I'm fine with all of it. Just the overall cancer threat forever hovering that is so overwhelming.
posted by marimeko at 5:11 PM on January 9, 2018 [1 favorite]
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posted by veggieboy at 9:42 AM on January 1, 2018 [2 favorites]