I don't really have anything interesting to say. But I am having a bout of extreme frustration with my situation and I don't want to sit with it quite yet. I want to write about it first. I usually do things the other way around. This post may be more like a catch you up to date on how things are actually proceeding in my cancer journey/ bitch fest than anything else. Don't look for inspiration here. This is just me venting.
I've gone back to work full time. I feel great when I'm at work so know its a good thing for me. It's nice to have some what of an income again. But I often wonder if its still too much. Much like when I fist started chemo, I seem to have an allotted amount of energy and then I crash. I have lost all interest in cleaning my house, mainly because I don't have the energy for it. I used to love to nest. Now the chores that I used to love feel like chores and i find myself fantasizing about a house cleaning service. I'm also interviewing plastic surgeons to get second opinions regardimg my reconstruction debacle. That takes up a lot of time. There is also the research. What could have caused the infections? The fear of more infections, the fear of more surgeries, the fear of a less than desirable cosmetic outcome due to very delayed reconstruction. These are all thoughts that when I let my mind free to roam, plague me. I have reached out to my current surgeon to let him know what I'm doing and say that he isn't completely off the table to continue reconstruction, that I had been traumatized by what happened and I really needed to feel like i was getting all of the information that I could and making the best decision for my care. That relationship was difficult to consider parting with, I think it has a lot to do with him seeing me from the beginning. He saw me when I was who I was. Pre cancer treatment. The people I now meet see a bald chick with no breasts. a new beast for sure, but there was comfort in having someone who is in charge of restoring something cancer takes away see you as the person you once were. And we become attached to these people as we plow through these terrifying blows we are handed. He had been a beacon of hope for me. He was going to make me beautiful again. And he did, but things went wrong and now I'm left with this. I wanted to sit down and consult with him again possibly. It was a heartfelt email. I didn't want him to be blindsided and I wanted all the cards on the table. But he hasn't responded. So I'm a little annoyed about that.
Like I mentioned earlier, I will feel great for a few hours a day and then I crash. When I crash its so hard though. I feel I still have so much healing to do, and I worry that my plate is too full. I wonder if my efforts shouldn't be so focused on finding a new surgeon when I am still I'm cancer treatment, and there are other things that are paramount to my healthcare. For instance, I have to start getting screened for ovarian cancer every 6 months (it should have happened by now) but the OBGYN that I chose, because she takes a more holistic approach, is practically impossible to get a hold of. I had my initial consult with her where we discussed how we would screen and watch for tamoxifen side effects, and she would get my cancer records and proper test orders from my other doctors and get back to me. This was over two weeks ago. Still nothing. I wish I didn't feel a sense of urgency concerning reconstruction and would focus more on these things. Having the second of my implants removed eased some of the urgency since I hated wearing a prosthetic and I hated only having one boob. I also hated feeling torn about whether to stick with my surgeon or find a new one when I had one perfectly reconstructed breast and one deflated mass of skin. Now at least when I start over, it's a clean slate, if you don't count the scar tissue and all of the things that go along with my already being operated on four times in the last year. But there is a sense. I mean, in clothes I feel cute ish. I bought a padded bra. It covers up the mess underneath. I'm comfortable with the flat chest in clothes. But every time I undress I look down and I am reminded that I had cancer, am still fighting, and this is really happening. I lost my breasts. Psychologically there is a huge jump from waking up with expanders in serving as breast mounds and never having to see yourself flat...to going into a surgery that is supposed to be the easy one, to ending up with two chewed up looking pieces of flesh on your chest with deep red scars underlining them, at a time when things were expected to be wrapping up.
Then there is this awesome skin rash. It started a few days ago, on my belly. By this morning it was hip to hip and as I type it is crawling onto my back and my legs and up my mess of a chest, swarming around my port and creeping onto my shoulders. I spoke to both my oncologist and the nurse of the infectious disease doc on my case today. Oncologist wanted to wait to see what ID doc had to say, assuming he may take me off the diflucan. ID doc didn't bother to get back to me so I had to call his nurse at end of day. Oh yeah, she had spoken with him. He said he has never heard of any reaction like that to the drug and to take a Benadryl. If it doesn't go away or goes worse ill have to come in and see one of the other doctors since he will be on vacation. It could be the tamoxifen, my hormone blocking drug; it could be the diflucan, my antifungals drug. I've been on both for the same amount of time. I'm also having searing chest pains and shortness of breath. This could be a result of all of the surgeries. This could be a side effect of the tamoxifen. This could also mean that although I'm holding my shit together pretty fucking well, I'm pretty anxious about the situation. Faith or no faith. The shit gets old when it doesn't stop slinging.
I'm tired. I'm so very tired. That's the truth.
Showing posts with label breast cancer. Show all posts
Showing posts with label breast cancer. Show all posts
Tuesday, July 23, 2013
Wednesday, June 12, 2013
It's Not About the Tits
My PRC friend Renee posted a blog about how cancer isn't pretty not too long ago. Like many of us, she is squeamish about all the pink stuff...the way in our culture breast cancer awareness had become something of a disease tied into a pretty little package with a pretty little bow. Well meaning friends and family send us pink ribbons and pink mittens and pink pink pink galore. Some of us embrace it. Some of us loathe it. Some of us (like myself) could give two shits about all the pink stuff, but while not much caring for it, love the idea behind the gesture when receiving the color pink. Pink has never been one of my favorite colors anyhow. I prefer orange, green, and blue. In that order actually. But I digress...her blog made me reflect because it struck a cord in me at how we as survivors contribute to the notion that this is a pretty disease the general public believes it to be a survivable disease, something if we are diagnosed with, there is enough research and science to get us through unscathed. We get the prize of the "perfect new rack" if we so choose. The general public isn't so aware that breast cancer comes in gobs of shapes and sizes and severity. It affects us for life. It changes our bodies' chemistry, our hormones, our ability to heal, our daily dose of medicine, medical maintenance, our appearances and our relationships to the people and the world around us. And yes, it can actually kill us. I can't tell you how many times I could be quoted as saying "Well, at least those breast cancer survivors got a new pair...I mean, there has to be a silver lining, right?" That was pre diagnosis. I can say something similar to that now, to make people feel comfortable, to look on the bright side of things, but behind that reality is the physical cringe I get that the former me actually mouthed anything like that out loud. Because I know that I was clueless. I was uninformed. And I couldn't possibly have known what those women before me had gone through to get that perfect pair of plastic tits, and I had no fucking clue what I would have to endure to get mine. I don't fault anyone for thinking this way. I don't fault myself for having thought this way. I just reflect on what part we survivors play in making it all look so pretty. As for me, I went into treatment with a handful of things that I knew would happen, surrounded by a million zillion scenarios that might alter those few known realities, and a million zillion things that I had no clue about that might happen to my body, my mind, my place in this world, my life. The things I knew were that I would loose my breasts, opt for reconstruction via implants, hoping for no radiation as to keep the likelihood of reconstruction simple, that I would most definitely be on hormone blocking drugs for the rest of my childbearing years, most likely preventing me from ever conceiving or carrying a child of my own, and that I would probably go through chemo. I grabbed on to two things that I had control over, and that I could turn into "sunshine shit pie" (a term I coined a few years ago. I really don't use it enough). I decided that I would use the loss of my hair as opportunity to play dress up with turbans and long earrings. I adopted a new style, altered my make up regimen, and set out to take photos of myself almost every day (that I got dressed) to share and connect with people in my virtual world that I wasn't seeing on a regular basis. I knew that they wanted to see a brave face. Instinct tells us that the people who care for us, the ones who pray and hope and want us to continue to live and to be present in their lives, really want us to look good, to feel good, or to at least look like we're feeling good. It gives them peace of mind. But it made me feel good too. It made me feel good to be able to embrace this change in me. It made me feel brave to look brave. It was almost like putting on a costume. But then the costume becomes you. And I think that's what happens...
I wrote that blog entry intro several weeks ago, before I went in for the second stage of my reconstruction surgery. Originally, as I was wrote, I wanted to convey to that, this being an entry not only about how we as survivors play our roles in society's perception of our disease, but also of body image issues and the havoc this disease wreaks on a breast cancers survivors image and acceptance of herself. I wanted to shed light on the fact that, although it may seem like a silver lining that we get new boobs...I can't tell you how many people have said, "well at least you will have perfect tits for the rest of your life." Well meaning, of course...that we often go through so much to get here that its not actually all that "worth it" and it isn't actually all that important either. I wanted to point out that while there are several different options for reconstructing a breast these days,one of the most common for smaller ladies like myself is one called the expander to implant method. What happens is that we go into surgery for a mastectomy, where every ounce of breast tissue is scooped from inside our breasts like a pumpkin, that tissue is sliced up like a loaf of bread and biopsied for cancer cells, and a plastic expander (balloon with a valve) is put in as a replacement. It is placed under the pectoral muscle. The nipples are most often removed. Some are opting for nipple sparing mastectomies these days. I did not. During that initial surgery the expander is filled as much as can be with saline so that, if we are lucky, we wake up with mounds that resemble breasts. Over time, we go in to our plastic surgeons offices to have a needle stuck into the valve in our expanders and we are injected with saline to grow our boobs before our very eyes, to achieve the desired size, usually a bit larger than the size we want to end up with. The expansion process hurts and causes some tightness in the chest...it is stretching your skin and your pectoral muscle out to help create a pocket for your new "breast". When the time comes, depending on your treatment regimen, you will go in for phase two of your reconstruction surgery and get your expanders swapped out for implants. There is usually a third surgery where nipples are made, using tissue from another part of your body, or the twist and sew method, like I was planning to have done. During this third procedure, oftentimes fat grafting is done or other methods of perfecting the placement of the implant. Then months later, you can get the aureola tattooed on. The 3D portion of your nipple often doesn't stay that way and flattens over time. The tattoos have to be touched up. The implants often have to be replaced every 10 years or so. This is another maintenance issue. Yes, they look great in clothes. Yes, they are perky. Yes, they look pretty close to the real thing. But look close enough and you know they aren't the real thing. Look close enough and you know those nipples aren't real. And most of all, you lose every ounce of feeling you had in your breasts before this happened to you. No sensation. Nothing. And then there is the risk of infection or other complications due to reconstruction or placing a foreign body in your body. As cancer patients who have gone rigorous immune altering treatments, we are at larger risk for these complications already. Throw in radiation and most of the survivors I know just cross their fingers and hope for the best. Hope they don't lose their skin, or that their end result will be symmetrical enough in clothing, or that they will learn to live with the discomfort the implants cause in the tightened, usually burned and radiated skin.
I am revisiting and revising this blog entry today from a perspective I didn't expect to be coming from at this point in my journey. I have gone through stage 2 of my reconstruction. I got my expanders swapped out for implants. I have since lost both of my implants, undergoing three surgeries in a 5 week period, due to infection. I am seeing my unreconstructed and mangled breasts for the first time since my diagnosis, 8 months ago. It is one thing to make the decision to lose your breasts all together, and then wake up with something in their place that looks similar to a breast. It is one thing to go through treatment with expanders. They are not comfortable. I liken the feeling to wearing footballs and an underwire bra under your skin at all times. But you get used to them. And they look good in clothes. You still have a womanly shape. You cant lie in your stomach. They don't bounce. They don't give at all. They aren't fun to fondle. I didn't feel super sexy naked, but I liked the way I felt in clothing, and I embraced it as part of my journey, most of all embracing the fact that with expanders, I did not have to wear a bra! But then this happened. I have no choice but to go flat until further notice. And it's not like I'm just a flat chested woman, or a woman who from the get go opted out of reconstruction so she has a nice smooth flat surface of a chest. I wore expanders for 6 months and had my pectoral muscles stretched and my skin stretched to hold a 400cc implant on each side. And now they are not only flat, but indented. And wrinkled. Mangled. I can't wear a shirt that doesn't show the mess that lies underneath. I have to wear a bra. Thank god I found a pullover bralette with a little foam padding that makes me look like a normal flat chested woman under clothes. But God, does this put a damper on some things. My self image. My ability to feel sexy. More than anything I was ready to get my "groove" back and this whole 3 surgeries in 5 weeks thing has really put a damper on the romance. My friend told me the other day, "I know this kicked your spirit down...you don't use words like mangled. You have always been so positive about all of this" He was reminding me that the important thing really was that I was alive and that I was/am in theory, beating cancer. But we talked about how ironic it was that one of the most life threatening experiences that I have had since diagnosis was that first infection, one week after implant surgery, when my body was this close to going into septic shock and I had to have emergency surgery to remove it, and it had nothing to do with my having cancer. It was technically a cosmetic procedure... I was one breasted for three weeks before the other one came out, because cultures showed that there was still yeast in the implant.
I guess what I'm trying to touch on is that not only is cancer not pretty, even pink ribboned breast cancer in all it's popularity, but it can be downright ugly. It can kick the shit out of us. And it's not just the diagnosis. It's not just the treatment. It's the toll it can take on our bodies as women, when we already live in a society that values very highly two things.. Hair and breasts. It's not easy. It is fucking hard. And I'm doing my best to put my best out into the world. And you know what? I am learning again and again and again that its not about the boobs or the hair. It's not about making yourself look pretty for the people around you. That can be fun, it can be embraced.. It can even be a silver lining in this shit storm of a disease. But that isn't what this is all about. One, it is about surviving to tell the tale, or telling the tale for as long as you survive. These two wrinkled masses of flesh on my chest bring this disease to a whole new reality for me, as I was caught up on finishing it up and getting back to the old me. Guess what? That person no longer exists. I am realizing that this journey is not about me. It's not about my boobs. My hair. My looks. It's about the ability I have to touch someone's heart, to receive kindness, to express gratitude, and to find the Divine working in my life and the lives around me. At this stage I know this. I have no breasts. I have a voice. I have learned that my instinct is connected to a higher power and that I can listen to it if I make the time to connect. And that I need to continue to write. To share. Because this isn't about me. It's about something bigger.
I wrote that blog entry intro several weeks ago, before I went in for the second stage of my reconstruction surgery. Originally, as I was wrote, I wanted to convey to that, this being an entry not only about how we as survivors play our roles in society's perception of our disease, but also of body image issues and the havoc this disease wreaks on a breast cancers survivors image and acceptance of herself. I wanted to shed light on the fact that, although it may seem like a silver lining that we get new boobs...I can't tell you how many people have said, "well at least you will have perfect tits for the rest of your life." Well meaning, of course...that we often go through so much to get here that its not actually all that "worth it" and it isn't actually all that important either. I wanted to point out that while there are several different options for reconstructing a breast these days,one of the most common for smaller ladies like myself is one called the expander to implant method. What happens is that we go into surgery for a mastectomy, where every ounce of breast tissue is scooped from inside our breasts like a pumpkin, that tissue is sliced up like a loaf of bread and biopsied for cancer cells, and a plastic expander (balloon with a valve) is put in as a replacement. It is placed under the pectoral muscle. The nipples are most often removed. Some are opting for nipple sparing mastectomies these days. I did not. During that initial surgery the expander is filled as much as can be with saline so that, if we are lucky, we wake up with mounds that resemble breasts. Over time, we go in to our plastic surgeons offices to have a needle stuck into the valve in our expanders and we are injected with saline to grow our boobs before our very eyes, to achieve the desired size, usually a bit larger than the size we want to end up with. The expansion process hurts and causes some tightness in the chest...it is stretching your skin and your pectoral muscle out to help create a pocket for your new "breast". When the time comes, depending on your treatment regimen, you will go in for phase two of your reconstruction surgery and get your expanders swapped out for implants. There is usually a third surgery where nipples are made, using tissue from another part of your body, or the twist and sew method, like I was planning to have done. During this third procedure, oftentimes fat grafting is done or other methods of perfecting the placement of the implant. Then months later, you can get the aureola tattooed on. The 3D portion of your nipple often doesn't stay that way and flattens over time. The tattoos have to be touched up. The implants often have to be replaced every 10 years or so. This is another maintenance issue. Yes, they look great in clothes. Yes, they are perky. Yes, they look pretty close to the real thing. But look close enough and you know they aren't the real thing. Look close enough and you know those nipples aren't real. And most of all, you lose every ounce of feeling you had in your breasts before this happened to you. No sensation. Nothing. And then there is the risk of infection or other complications due to reconstruction or placing a foreign body in your body. As cancer patients who have gone rigorous immune altering treatments, we are at larger risk for these complications already. Throw in radiation and most of the survivors I know just cross their fingers and hope for the best. Hope they don't lose their skin, or that their end result will be symmetrical enough in clothing, or that they will learn to live with the discomfort the implants cause in the tightened, usually burned and radiated skin.
I am revisiting and revising this blog entry today from a perspective I didn't expect to be coming from at this point in my journey. I have gone through stage 2 of my reconstruction. I got my expanders swapped out for implants. I have since lost both of my implants, undergoing three surgeries in a 5 week period, due to infection. I am seeing my unreconstructed and mangled breasts for the first time since my diagnosis, 8 months ago. It is one thing to make the decision to lose your breasts all together, and then wake up with something in their place that looks similar to a breast. It is one thing to go through treatment with expanders. They are not comfortable. I liken the feeling to wearing footballs and an underwire bra under your skin at all times. But you get used to them. And they look good in clothes. You still have a womanly shape. You cant lie in your stomach. They don't bounce. They don't give at all. They aren't fun to fondle. I didn't feel super sexy naked, but I liked the way I felt in clothing, and I embraced it as part of my journey, most of all embracing the fact that with expanders, I did not have to wear a bra! But then this happened. I have no choice but to go flat until further notice. And it's not like I'm just a flat chested woman, or a woman who from the get go opted out of reconstruction so she has a nice smooth flat surface of a chest. I wore expanders for 6 months and had my pectoral muscles stretched and my skin stretched to hold a 400cc implant on each side. And now they are not only flat, but indented. And wrinkled. Mangled. I can't wear a shirt that doesn't show the mess that lies underneath. I have to wear a bra. Thank god I found a pullover bralette with a little foam padding that makes me look like a normal flat chested woman under clothes. But God, does this put a damper on some things. My self image. My ability to feel sexy. More than anything I was ready to get my "groove" back and this whole 3 surgeries in 5 weeks thing has really put a damper on the romance. My friend told me the other day, "I know this kicked your spirit down...you don't use words like mangled. You have always been so positive about all of this" He was reminding me that the important thing really was that I was alive and that I was/am in theory, beating cancer. But we talked about how ironic it was that one of the most life threatening experiences that I have had since diagnosis was that first infection, one week after implant surgery, when my body was this close to going into septic shock and I had to have emergency surgery to remove it, and it had nothing to do with my having cancer. It was technically a cosmetic procedure... I was one breasted for three weeks before the other one came out, because cultures showed that there was still yeast in the implant.
I guess what I'm trying to touch on is that not only is cancer not pretty, even pink ribboned breast cancer in all it's popularity, but it can be downright ugly. It can kick the shit out of us. And it's not just the diagnosis. It's not just the treatment. It's the toll it can take on our bodies as women, when we already live in a society that values very highly two things.. Hair and breasts. It's not easy. It is fucking hard. And I'm doing my best to put my best out into the world. And you know what? I am learning again and again and again that its not about the boobs or the hair. It's not about making yourself look pretty for the people around you. That can be fun, it can be embraced.. It can even be a silver lining in this shit storm of a disease. But that isn't what this is all about. One, it is about surviving to tell the tale, or telling the tale for as long as you survive. These two wrinkled masses of flesh on my chest bring this disease to a whole new reality for me, as I was caught up on finishing it up and getting back to the old me. Guess what? That person no longer exists. I am realizing that this journey is not about me. It's not about my boobs. My hair. My looks. It's about the ability I have to touch someone's heart, to receive kindness, to express gratitude, and to find the Divine working in my life and the lives around me. At this stage I know this. I have no breasts. I have a voice. I have learned that my instinct is connected to a higher power and that I can listen to it if I make the time to connect. And that I need to continue to write. To share. Because this isn't about me. It's about something bigger.
Fraidy Cat
I used to be afraid of roller coasters. Horses. 3 wheelers. Something of a "fraidy" cat.
A lot of talk has been had about how cancer changes a person. There is the really obvious seize the moment type stuff. But personally I'm also less worried about the general outcome of things. Where will we will be in ten years? Where will we be in five? Who knows. That's the general recognition, that we don't know what tomorrow holds or how much time we have left. We don't really know, so how much effort do we really want to spend on things that are less important? And how do we gage the importance of the thing? My entire perspective on life has changed. I met with some cancer survivors for lunch yesterday. We talked about how it's different to say that we feel good today, because we may not have the energy level that we once had, but we know what it's like to feel like total shit so it's all relative, right? After cancer treatment it could take 6 months. It could take a year to recover from the toll that cancer drugs take on your body. It could NEVER be what it once was. My oncologist told me, when I inquired about my still below normal white blood count, that sometimes our counts never return to normal. There isn't anything non synthetic that we can do to raise them (the answer to my next question..."Well, what can I do to raise them?") There are studies that show that after cancer treatment our bodies age 10 years. But that doesn't matter so much. It feels good to feel good. Our bodies have been through so much trauma. We have carried a burden so heavy in it's load that even though it leaves us tired, once the struggle of the big fight ceases, the load may have deemed burdensome before cancer seems somewhat more manageable. There becomes an ease to life, a magnificent lightness amidst the tragedy that is so prevalent, and so necessary, for there to exist balance in our world. We decide how much our fatigue and our forever altered bodies will affect our livelihood and our qualities of life. Perhaps we just fuse the energy that we are left with into different things...one peer described that she was a very self disciplined person before, and still is, but that meeting periodically,on a regular basis with other cowgirls reminds her that its okay if the laundry doesn't get done on Wednesday, or if the to do list doesn't get finished by the weekends end. "Weekends are for relaxing", she said". I made a new survivor friend recently that has a very high stress job and she says going back to work after cancer treatment and a series of surgeries feels different. She has a different approach to her work stress. I have a friend whom I've only met online. Her existence has made me a braver person. She is a fellow cowgirl and she is living with stage 4 metastatic breast cancer. Her cancer has spread to her brain and she has had 3 brain surgeries in 8 months. I know her through her blog, through social networking I've been able to see her paintings, her photos, and read her words. She blows my mind. I remember the post where she announced that they had found what might be a second brain tumor and she would have surgery again. She was at a restaurant, drinking a beer with her husband. She was scared shitless. She said so in her blogs. She was asking for support and prayers. She begged her friends not to let her isolate like she did the last time. I could relate to that plea. I was so anti social during my treatments. I could barely look the person in the eye, if I dared let them into my house to visit. But she was being so brave. Just thinking about what her experience stirred in me brings me to tears as I type this. She had surgery shortly after, and it was a tumor. They got as much as they could. A few days later, she posted photos of her surrounded by her loving women friends, and then a self portrait of her, beaming at herself in the mirror. I am sobbing now. That beaming smile came to me at a time when I was at one of my darkest places. I was terrified that I would always feel so bad, that I would never feel a load lighter than the boulders I carried. And she was beaming, a few days after brain surgery. This is a woman who only months before had to learn to walk again, and went into a second surgery not knowing if she would have to do that all over again. Today she is posting online asking of anyone has a recumbent bike that she can borrow so she can ride in the Texas Mamma Jamma Ride, benefitting the BCRC this year. She can't ride a regular bike because she has balance issues, but she's getting out there anyway. Seriously? What the hell. Lets all take a moment of silence and let go of the thing that pissed you off today. I, for one, considered myself a person that thrives on organization and control. I'm not abandoning practical organizational skills, but I have abandoned the need to control others, and let go of situations that are simply out of my control. I don't need to bother myself with what everyone else is doing. I don't need to mama hen everyone. That is a quality that I have had that has been detrimental to my own development and quality of life in the past. I will no longer fuse my energy into that that which does not need my input. Nor do I need to worry about how things get done that are none of my business. Cancer has freed me of this and many other "stories" that I have believed about myself that are no longer true. In so many words, we all agree, as survivors of a traumatic life altering diagnosis and various experiences related to that diagnosis, we share a similar approach to life. It is really easier to let the small things go. Another thing a lot of my breast cancer sisters have in common is a new appetite for life. We want to socialize, especially with one another. But mostly we want to hug and squeeze the people that we love. We want to express our feelings to the people in our lives every chance we get. We have a special insight into the alternative to living that urges us to show up for life. That doesn't mean the same thing for everyone, but it carries a similar weight in each of our lives. Sometimes, for me, it is just savoring the time I spend alone with myself, allowing myself to enjoy the music, take a drive, smell the flowers, pet the kitties, snuggle the doggies, look at my fashion mags, read a book, connect with a friend on the phone...blog....without letting my mind wander and worry about what's for dinner, the bills on the fridge, the to do list in my bag, whether or not I will get fat or break out with acne on tamoxifen or if I will ever do a handstand, when will I have children, will I be a terrible mother, will my pets like the house sitter when we go on vacation, and what if my cat tries to run away?!
So, I guess what I'm trying to say is that I used to be afraid of roller coasters. I used to be terrified to drive on the highway. I used to lie in bed at night wondering when I would die, when my parents would die, when my lover would die...depressing right? Terrified of that moment, frozen by it so that it kept me from living. Something is changing in me. I'm not saying I'm throwing caution to the wind, that I have a death wish, or that I might want to skydive... But I will say that I'm less afraid of what might happen tomorrow. I'm more driven to go see the things that I need to see,pet the horses, ride the helicopters, the airplanes, the three wheelers, the proverbial roller coasters of life. I'm more open to the vast possibilities of tomorrow, rather than limit my possibilities to what I "think" I have planned.
How does this tie into my marriage? At lunch we talked about how our new outlooks, I prefer the word "awakenings", translate into our relationships with our partners. Many of my peers have moved out of old patterns and their partners may not have arrived at the same place, or aren't getting there at the same time. A balance needs to be met. And that's OK. These women have changed. In so many ways we are not the same wives we were to our partners when we started this journey. I have been thinking a lot about this actually. From the beginning of diagnosis, I was very aware that this thing was going to rock me. It would rock us as a couple too, in one way or another. We had just signed up for "till death do us part", and the death part was looming in such a way that was a bit...er...uncomfortable, 7 months into that very serious commitment. Here we would be tested. I was nervous because I had the insight to know that This Thing would break me open and it might be ugly and painful before it was beautiful and it may not bade well for our marriage. I had the insight to know I would be given the gift of being woken UP in some way. I knew that she would stand by me. I never doubted that she would be by my side. I never doubted that because when we grasped hands right before we walked down that aisle together in front of god and everyone, I felt in my gut that she was truly the one that could withstand to be my partner for life. I had an inkling that one of the most integral components of a successful marriage was to be able to bend and sway, and I believed us both to be willing to do what it takes. So when I was diagnosed I knew that we could "do this thing" because we "get shit done" but I didn't know what struggles would emerge in our relationship to each other because of it. But I had to let that go. I had to trust that she would do right by her and I would do right by me and we would do right by one another because that's who we are at the core. I had to put a trust in her that I never imagined I would need to put into practice so dramatically that soon into our marriage. I had to let go. I had to stop believing that she needed me to meet every need and take care of her in every possible avenue of life that I had the power to care for her.
So, now I feel the need to express this very very deep to the core guttural gratitude that I have this person in my life that not only can stand beside me and hold my hand through the shitty stuff, but that can bend and sway as I grow. That she had the intuition to let me hide away when I needed it and celebrate my new life as I gained it. I know that my diagnosis and my experience has jilted her to the core. Not in the same way as it has me, and that's okay (letting go of that mama hen stuff...). But in a way that we can look at one another today and realize that we both have changed, we both have grown. We have shed. We have both gained perspective from this experience. And we are steadfast in our love and commitment. In many ways that means the same things that it did before. But in many new exciting ways I am recognizing a new stride that we are learning the steps to. We are opening up to new possibilities for our lives as a result of what cancer has given each of us. There is a new dynamic in the making here. It's becoming more clear to me that my partner has also acquired an appreciation for the unknowns in life. We will still make plans. But we will remain open to the vast possibilities of life. Together.
A lot of talk has been had about how cancer changes a person. There is the really obvious seize the moment type stuff. But personally I'm also less worried about the general outcome of things. Where will we will be in ten years? Where will we be in five? Who knows. That's the general recognition, that we don't know what tomorrow holds or how much time we have left. We don't really know, so how much effort do we really want to spend on things that are less important? And how do we gage the importance of the thing? My entire perspective on life has changed. I met with some cancer survivors for lunch yesterday. We talked about how it's different to say that we feel good today, because we may not have the energy level that we once had, but we know what it's like to feel like total shit so it's all relative, right? After cancer treatment it could take 6 months. It could take a year to recover from the toll that cancer drugs take on your body. It could NEVER be what it once was. My oncologist told me, when I inquired about my still below normal white blood count, that sometimes our counts never return to normal. There isn't anything non synthetic that we can do to raise them (the answer to my next question..."Well, what can I do to raise them?") There are studies that show that after cancer treatment our bodies age 10 years. But that doesn't matter so much. It feels good to feel good. Our bodies have been through so much trauma. We have carried a burden so heavy in it's load that even though it leaves us tired, once the struggle of the big fight ceases, the load may have deemed burdensome before cancer seems somewhat more manageable. There becomes an ease to life, a magnificent lightness amidst the tragedy that is so prevalent, and so necessary, for there to exist balance in our world. We decide how much our fatigue and our forever altered bodies will affect our livelihood and our qualities of life. Perhaps we just fuse the energy that we are left with into different things...one peer described that she was a very self disciplined person before, and still is, but that meeting periodically,on a regular basis with other cowgirls reminds her that its okay if the laundry doesn't get done on Wednesday, or if the to do list doesn't get finished by the weekends end. "Weekends are for relaxing", she said". I made a new survivor friend recently that has a very high stress job and she says going back to work after cancer treatment and a series of surgeries feels different. She has a different approach to her work stress. I have a friend whom I've only met online. Her existence has made me a braver person. She is a fellow cowgirl and she is living with stage 4 metastatic breast cancer. Her cancer has spread to her brain and she has had 3 brain surgeries in 8 months. I know her through her blog, through social networking I've been able to see her paintings, her photos, and read her words. She blows my mind. I remember the post where she announced that they had found what might be a second brain tumor and she would have surgery again. She was at a restaurant, drinking a beer with her husband. She was scared shitless. She said so in her blogs. She was asking for support and prayers. She begged her friends not to let her isolate like she did the last time. I could relate to that plea. I was so anti social during my treatments. I could barely look the person in the eye, if I dared let them into my house to visit. But she was being so brave. Just thinking about what her experience stirred in me brings me to tears as I type this. She had surgery shortly after, and it was a tumor. They got as much as they could. A few days later, she posted photos of her surrounded by her loving women friends, and then a self portrait of her, beaming at herself in the mirror. I am sobbing now. That beaming smile came to me at a time when I was at one of my darkest places. I was terrified that I would always feel so bad, that I would never feel a load lighter than the boulders I carried. And she was beaming, a few days after brain surgery. This is a woman who only months before had to learn to walk again, and went into a second surgery not knowing if she would have to do that all over again. Today she is posting online asking of anyone has a recumbent bike that she can borrow so she can ride in the Texas Mamma Jamma Ride, benefitting the BCRC this year. She can't ride a regular bike because she has balance issues, but she's getting out there anyway. Seriously? What the hell. Lets all take a moment of silence and let go of the thing that pissed you off today. I, for one, considered myself a person that thrives on organization and control. I'm not abandoning practical organizational skills, but I have abandoned the need to control others, and let go of situations that are simply out of my control. I don't need to bother myself with what everyone else is doing. I don't need to mama hen everyone. That is a quality that I have had that has been detrimental to my own development and quality of life in the past. I will no longer fuse my energy into that that which does not need my input. Nor do I need to worry about how things get done that are none of my business. Cancer has freed me of this and many other "stories" that I have believed about myself that are no longer true. In so many words, we all agree, as survivors of a traumatic life altering diagnosis and various experiences related to that diagnosis, we share a similar approach to life. It is really easier to let the small things go. Another thing a lot of my breast cancer sisters have in common is a new appetite for life. We want to socialize, especially with one another. But mostly we want to hug and squeeze the people that we love. We want to express our feelings to the people in our lives every chance we get. We have a special insight into the alternative to living that urges us to show up for life. That doesn't mean the same thing for everyone, but it carries a similar weight in each of our lives. Sometimes, for me, it is just savoring the time I spend alone with myself, allowing myself to enjoy the music, take a drive, smell the flowers, pet the kitties, snuggle the doggies, look at my fashion mags, read a book, connect with a friend on the phone...blog....without letting my mind wander and worry about what's for dinner, the bills on the fridge, the to do list in my bag, whether or not I will get fat or break out with acne on tamoxifen or if I will ever do a handstand, when will I have children, will I be a terrible mother, will my pets like the house sitter when we go on vacation, and what if my cat tries to run away?!
So, I guess what I'm trying to say is that I used to be afraid of roller coasters. I used to be terrified to drive on the highway. I used to lie in bed at night wondering when I would die, when my parents would die, when my lover would die...depressing right? Terrified of that moment, frozen by it so that it kept me from living. Something is changing in me. I'm not saying I'm throwing caution to the wind, that I have a death wish, or that I might want to skydive... But I will say that I'm less afraid of what might happen tomorrow. I'm more driven to go see the things that I need to see,pet the horses, ride the helicopters, the airplanes, the three wheelers, the proverbial roller coasters of life. I'm more open to the vast possibilities of tomorrow, rather than limit my possibilities to what I "think" I have planned.
How does this tie into my marriage? At lunch we talked about how our new outlooks, I prefer the word "awakenings", translate into our relationships with our partners. Many of my peers have moved out of old patterns and their partners may not have arrived at the same place, or aren't getting there at the same time. A balance needs to be met. And that's OK. These women have changed. In so many ways we are not the same wives we were to our partners when we started this journey. I have been thinking a lot about this actually. From the beginning of diagnosis, I was very aware that this thing was going to rock me. It would rock us as a couple too, in one way or another. We had just signed up for "till death do us part", and the death part was looming in such a way that was a bit...er...uncomfortable, 7 months into that very serious commitment. Here we would be tested. I was nervous because I had the insight to know that This Thing would break me open and it might be ugly and painful before it was beautiful and it may not bade well for our marriage. I had the insight to know I would be given the gift of being woken UP in some way. I knew that she would stand by me. I never doubted that she would be by my side. I never doubted that because when we grasped hands right before we walked down that aisle together in front of god and everyone, I felt in my gut that she was truly the one that could withstand to be my partner for life. I had an inkling that one of the most integral components of a successful marriage was to be able to bend and sway, and I believed us both to be willing to do what it takes. So when I was diagnosed I knew that we could "do this thing" because we "get shit done" but I didn't know what struggles would emerge in our relationship to each other because of it. But I had to let that go. I had to trust that she would do right by her and I would do right by me and we would do right by one another because that's who we are at the core. I had to put a trust in her that I never imagined I would need to put into practice so dramatically that soon into our marriage. I had to let go. I had to stop believing that she needed me to meet every need and take care of her in every possible avenue of life that I had the power to care for her.
So, now I feel the need to express this very very deep to the core guttural gratitude that I have this person in my life that not only can stand beside me and hold my hand through the shitty stuff, but that can bend and sway as I grow. That she had the intuition to let me hide away when I needed it and celebrate my new life as I gained it. I know that my diagnosis and my experience has jilted her to the core. Not in the same way as it has me, and that's okay (letting go of that mama hen stuff...). But in a way that we can look at one another today and realize that we both have changed, we both have grown. We have shed. We have both gained perspective from this experience. And we are steadfast in our love and commitment. In many ways that means the same things that it did before. But in many new exciting ways I am recognizing a new stride that we are learning the steps to. We are opening up to new possibilities for our lives as a result of what cancer has given each of us. There is a new dynamic in the making here. It's becoming more clear to me that my partner has also acquired an appreciation for the unknowns in life. We will still make plans. But we will remain open to the vast possibilities of life. Together.
Sunday, April 7, 2013
These are Just some of the Things
Our wedding anniversary is in 15 days. No one is banking on us being able to do much, as I will be one day closer to my last round of chemo infusions, and I have gotten more sick with each one. Kayla's mom is here again, just like last year, to help. This time she's not making pies, helping sew finishing touches on our wedding clothes and preparing for family and friends to be here for our magical weekend. She's cleaning our house and maintaining our yard. She is touching things we haven't been able to reach for lack of time, money, energy. It's nice to have her here. It's comforting to feel like someone is taking care of Kayla. It hasn't been easy. For me, that's a given. As for Kayla, I've seen her coping right before my eyes. Like an extension of my brain and like clockwork she makes the world still go round. She works constantly. Sometimes I think I am disappearing. She often reminds me that I'm not. For me it takes a lot of reminding. This cancer is like quicksand. It's difficult to muddle through. I reckon I will find a way to keep afloat, and that I will reach a place of normalcy in my life. Maybe even joy. I hope so...
Because, I am suddenly consumed with worry about my prognosis. I have managed to get this far into this cancer journey without asking too many questions about my chances of survival or recurrence. When I asked my oncologist at our last appointment, "So, how do we know that all this worked?" He kind of chuckled and shook his head. "We will know in time. There aren't any blood tests that are going to show us. We just have to wait and see." Without getting into too much detail about the cancer itself, I will just say here that there are two characteristics of it that exist simultaneously and are also slightly opposing and that make my cancer slightly rare and more aggressive. I think it's something like 35% of breast cancers have both of these characteristics. This means that there are two different ways of looking at my survival rate, but those two percentages have to be considered in lieu of the other. I find it confusing so I realize that as a reader this might not make a lick of sense of it at all. Due to this sudden lack of certainty I feel a little trapped in this state of mind that is a whirlwind of what ifs, and why even bothers. I will find a way to tie all of this confusion into a neat little bow eventually. It's just that right now I'm in pain. I'm sick. Im sore. Im stiff. Im lonely. I hardly recognize my own face. Im scared. And there is a little taste of bitterness in my mouth.
Sometimes the effortlessness of existence that people crank out around us astonishes me. It's just that when Kayla and I managed to pull out our wedding from scratch last year, it symbolized the building of a foundation from what we were determined to build upon. We were hunting for an ease, a bite of that effortlessness. We spent so many of our efforts rapidly weaving our safety nets and our home into a happy nest. We built. But then the diagnosis. I just look around at the ease and effortlessness that I imagine in the lives around me and wonder if I will ever feel a part of that momentum. Like I'm not expecting to be denied or to lose or to die, even. These are the things I'm supposed to be learning not to fear. Loss, denial, death. These are just some of the things.
Because, I am suddenly consumed with worry about my prognosis. I have managed to get this far into this cancer journey without asking too many questions about my chances of survival or recurrence. When I asked my oncologist at our last appointment, "So, how do we know that all this worked?" He kind of chuckled and shook his head. "We will know in time. There aren't any blood tests that are going to show us. We just have to wait and see." Without getting into too much detail about the cancer itself, I will just say here that there are two characteristics of it that exist simultaneously and are also slightly opposing and that make my cancer slightly rare and more aggressive. I think it's something like 35% of breast cancers have both of these characteristics. This means that there are two different ways of looking at my survival rate, but those two percentages have to be considered in lieu of the other. I find it confusing so I realize that as a reader this might not make a lick of sense of it at all. Due to this sudden lack of certainty I feel a little trapped in this state of mind that is a whirlwind of what ifs, and why even bothers. I will find a way to tie all of this confusion into a neat little bow eventually. It's just that right now I'm in pain. I'm sick. Im sore. Im stiff. Im lonely. I hardly recognize my own face. Im scared. And there is a little taste of bitterness in my mouth.
Sometimes the effortlessness of existence that people crank out around us astonishes me. It's just that when Kayla and I managed to pull out our wedding from scratch last year, it symbolized the building of a foundation from what we were determined to build upon. We were hunting for an ease, a bite of that effortlessness. We spent so many of our efforts rapidly weaving our safety nets and our home into a happy nest. We built. But then the diagnosis. I just look around at the ease and effortlessness that I imagine in the lives around me and wonder if I will ever feel a part of that momentum. Like I'm not expecting to be denied or to lose or to die, even. These are the things I'm supposed to be learning not to fear. Loss, denial, death. These are just some of the things.
Friday, February 1, 2013
And with cancer comes...
One thing that this diagnosis has taught me is how limited our control is over life's momentum. Spontaneity has never been much of a thing for me. I like to plan things. I thrive on routine and I bask in an orderly and well arranged nest. I am always on time. I am not a fan of clutter. But, I am learning to operate under a new system of control. I am learning as I go what works for my body during treatment, how much I need to rest, how much I need to meditate, how much social interaction I need, how much I can handle and how far I can walk or ride my stationary excercise bike before I am winded and need to take a break. I am learning my body's new boundaries, and in learning them I am learning to accept and love it as it is. I have a body in transition. I literally live in a physical body of reconstruction. We all do. My transition is just more tactile than some. And it wasn't all voluntary. A large part of my personal spiritual practice is maintaining a strong mind/body connection. When I have felt the least alive is when I have suffered a drift of connection to my body. I can't tell you how many times I have gone to see my therapist in utter mental disarray, convinced I should be immediately medicated, to be gently reminded to sit and breathe, ask myself where in my body the pain or confusion is felt, and go there, breathe into it...sit in it...and possibly move with it. As a child I learned to dance and losing myself to the rhythm and the counts and the music and the repetition of rehearsal was therapy for me. Closing my eyes and chanting in a room of yogis is therapy for me too. So a common theme in my reckoning with breast cancer is working to overcome the challenges of a rapidly changing, unpredictable body, a body that I felt had somehow misled me, or turned against me. I thought I was on such intimate terms...but... I have to make a daily practice of trying to connect spiritually to a higher healing power, trying to connect with the depth of healing powers in the well of my deepest self, when at times, especially in the beginning of diagnosis, I couldn't look at myself in the mirror. I couldn't look myself in the eye. I couldn't take my shirt off in front of my wife. I couldn't fix my hair. I struggled for a grasp of how connection to this body could be possible at the same time that I was learning at a rapid rate what was about to transpire for me physically. I wrestled with avoidance but avoiding conflict of any kind is not conducive to my well being. So I started with confrontation. I needed to have a log of what was happening to me. If I log the pain, the suffering, breathe and move through it, like grinding a sore tooth until I can taste the blood, I will eventually find sense in the path that I chose. Eventually. Kayla is helping me log the physical transformation through photography. The images allow me to process what is happening in a new level. There have been moments of paralysis, moments of searing heartbreak. Then there are those sweet moments of peaceful surrender, when the stillness of the present pillows me with the realization that I am ALIVE, and I am finding an ease of grace through each phase of my physical appearance, navigating my way through this trial that tolls me from the inside out. There were many things that I have feared, many things that I desperately wanted to change, or feared I could never confront, that I am beginning to move through now. The change is inevitable. The ability to dig into and connect to the inevitability of it became more profound and more powerful under the knife of cancer.
Sunday, December 30, 2012
"How is it Going?", you ask.
3 weeks and 2 days post op. My tissue expanders (hard plastic balloon boobs) were expanded 4 days ago. I will have another expansion in 3 days. My chemo port was installed 3 days ago. I am going to try and go back to work in 4 days. I have my first round of chemo in 10 days.
How do I feel?
Physically: Sore, slightly winded, fatigued, generally uncomfortable 100% of the time. My armpits feel sunburned. The tissue expanders are placed below my muscles so I occasionally have spasms. All of the time it feels like I have done an extreme chest work out. The sternum is tender to the touch, but getting less so as time goes on. The inside of my chest wall feels almost exactly like your skin feels a few days after sitting for a very large tattoo. For those of you reading that have never healed from a large tat, I always compare the feeling to the tattooed body part being dragged along pavement or gravel, full of open wounds and raw, tender skin. I have phantom nipple pain. I guess. When I am cold, it feels like my nipples are rock hard and tender. But i don't have nipples. Maybe its the plastic not warming to my body temperature. The port is still sore and I hope swollen, otherwise this sucker sticks out so far from my body that it appears I have a raging boil about 2 or 3 inches just below my left clavicle. When I stretch my arm a certain way, or roll my neck as I usually do to loosen up, it pulls the port, which is connected very deeply to one of my main arteries. The port gives me the heeby jeebies. Just as I was in the brink of weaning off the narcotics, I have to have one in the morning just to get moving. I am a side or stomach sleeper, but stomach sleeping is not an option, and to lie comfortably on my side I have to wear a tight sports bra or place a small pillow or my hand in between my "breasts" as the hard expanders seem to knock together. No thanks. It is almost impossible to snuggle with my partner. Intimacy demands creativity at this point and the physical discomfort as well as the mental discomfort doesn't so much lend itself to the creative.
Mentally: Frustrated. It frightens me that I get winded after a brisk walk, and when I have trouble catching my breath as I first get out of bed. I can't do the same activities I could do a month ago. Guilty. I feel guilty that my partner is carrying so much of the weight. I don't feel sexy or interested in sex. Sadness.That my gorgeous honey will get bored of what I have become and will be left unsatisfied for too long. Resolved. I feel prepared for Chemotherapy. I am getting better at the waiting game. I am slightly sedated to the fact that I will be chock full of medicine that will kill healthy cells in my body, and that I will remain unaware of what side effects will happen to me until they actually do...or not. Gratitude. Grateful that I am not in this alone. That my friends have become my family and they have proven to stand by me no matter what. That the tribe I have always longed for exists. I feel loved unconditionally and supported beyond measure. The peace that that feeling brings keeps me afloat. Always.
And I miss...oh my God do I miss.. Moving with abandon, that only those without foreign objects surgically inserted into ones body can. Wine. Sex. Feeling sexy, attractive. Running, jogging, hard core work outs. Caring what I see when I look in the mirror. My long red hair, my breasts...
And still, I would not trade any of the things that I whine about for the naïveté of my mind set pre cancer. I would not trade it because I know that with the weight of this burden comes the fruit of a new life. I am not afraid anymore and that alone is the most miraculous innovation of my life. I know that the lack of fear is worth all of the above, because all of the above is temporary. Or so they say.
How do I feel?
Physically: Sore, slightly winded, fatigued, generally uncomfortable 100% of the time. My armpits feel sunburned. The tissue expanders are placed below my muscles so I occasionally have spasms. All of the time it feels like I have done an extreme chest work out. The sternum is tender to the touch, but getting less so as time goes on. The inside of my chest wall feels almost exactly like your skin feels a few days after sitting for a very large tattoo. For those of you reading that have never healed from a large tat, I always compare the feeling to the tattooed body part being dragged along pavement or gravel, full of open wounds and raw, tender skin. I have phantom nipple pain. I guess. When I am cold, it feels like my nipples are rock hard and tender. But i don't have nipples. Maybe its the plastic not warming to my body temperature. The port is still sore and I hope swollen, otherwise this sucker sticks out so far from my body that it appears I have a raging boil about 2 or 3 inches just below my left clavicle. When I stretch my arm a certain way, or roll my neck as I usually do to loosen up, it pulls the port, which is connected very deeply to one of my main arteries. The port gives me the heeby jeebies. Just as I was in the brink of weaning off the narcotics, I have to have one in the morning just to get moving. I am a side or stomach sleeper, but stomach sleeping is not an option, and to lie comfortably on my side I have to wear a tight sports bra or place a small pillow or my hand in between my "breasts" as the hard expanders seem to knock together. No thanks. It is almost impossible to snuggle with my partner. Intimacy demands creativity at this point and the physical discomfort as well as the mental discomfort doesn't so much lend itself to the creative.
Mentally: Frustrated. It frightens me that I get winded after a brisk walk, and when I have trouble catching my breath as I first get out of bed. I can't do the same activities I could do a month ago. Guilty. I feel guilty that my partner is carrying so much of the weight. I don't feel sexy or interested in sex. Sadness.That my gorgeous honey will get bored of what I have become and will be left unsatisfied for too long. Resolved. I feel prepared for Chemotherapy. I am getting better at the waiting game. I am slightly sedated to the fact that I will be chock full of medicine that will kill healthy cells in my body, and that I will remain unaware of what side effects will happen to me until they actually do...or not. Gratitude. Grateful that I am not in this alone. That my friends have become my family and they have proven to stand by me no matter what. That the tribe I have always longed for exists. I feel loved unconditionally and supported beyond measure. The peace that that feeling brings keeps me afloat. Always.
And I miss...oh my God do I miss.. Moving with abandon, that only those without foreign objects surgically inserted into ones body can. Wine. Sex. Feeling sexy, attractive. Running, jogging, hard core work outs. Caring what I see when I look in the mirror. My long red hair, my breasts...
And still, I would not trade any of the things that I whine about for the naïveté of my mind set pre cancer. I would not trade it because I know that with the weight of this burden comes the fruit of a new life. I am not afraid anymore and that alone is the most miraculous innovation of my life. I know that the lack of fear is worth all of the above, because all of the above is temporary. Or so they say.
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