(Welcome to the 3-year anniversary of my breast cancer diagnosis. In honor of 3 years, I am writing 3 posts, having to do with what is often considered the 3 parts of the "whole" person--body, mind, and spirit.)
These past 3 years have been full of the stuff of living. So that's a loaded statement ;). But the thing I keep telling myself through the rougher portions is that something is trying to insure that I don't live a superficial life. Sometimes that's a bitter pill to swallow, but there's something about it that is awesome, too. I am of the school of thought that the value and worth of life comes from sharing it, from interacting with the people and world around you rather than being an observer. I have never been one to understand how some people create beautiful, amazing things and decide not to share them with anyone. Or how people never dive in to trying things and making connections with others. I don't know what kind of spirit I'd truly have left if it wasn't for that.
Now, granted, there are some times I could benefit from stopping the "doing" and take the role observing and taking in what's around me. And I do that and try to focus on moments in my day to just take it all in. But then I want to get back to the meat of it, the interaction with others. People are fascinating. People are messy. People want to do good. That's the best part of this whole experience--the people. I have gotten the opportunity to give and receive love from a whole host of family and friends. Sometimes the receiving part of that is harder than the giving, but that is something I am trying to get better at every day.
And so much of this is about trying to learn what I can from life to pass that on to Olive. Not that she won't have to learn many of the same lessons for herself no matter what I do. But maybe, from time to time, she'll take a break from thinking I'm lame and don't get it and couldn't possibly understand her life to realize that, because I love her so much, I could face anything and fight for what I needed to keep going. And hopefully she'll realize that with so much love coming to her from so many, she can face anything, too. Even boys and mean girls and all that stuff.
I have to take a detour here, and it will be an uncomfortable one. It would be disingenuous of me to talk about the big stuff of life and lessons learned and all that and not acknowledge that Ben & I got divorced this year. Kind of a big deal. I won't dissect the details here because that's not appropriate. But I do need to talk about how I digested the situation and where I'm at now. We celebrated our 10th anniversary in July, separated in Sept, and finalized the divorce in March. This sharing is just about acknowledging, of course, how the cancer diagnosis and the cascade of everything following it played a role in the split (from my perspective--I won't speak for Ben).
For my 2-year cancerversary, I had written about Ben asking me if it was all worth it. My answer, though a difficult one, was definitely yes. I guess it would have been a good idea to ask him that question, too. I think looking at me became looking at a lot of losses personified, the big one being the loss of any certainty for both of us. I don't know if people truly get that going through a diagnosis like this is not just the big bomb dropping once and then starting the clean-up--the tiny bombs keep dropping just when you think they're done and you've earned some peace. The whole decision-making process for treatment was a series of choose-your-poisons, sometimes literally, and there were so many moments of realizing how complicated it made everyday life and future planning and how some of those future options were being taken away. We had always approached our life together with an appreciation for all we earned and worked hard for--we didn't have much just handed to us. But as much as that leads you away from feeling a sense of entitlement in life overall, I think we felt entitled to the things we did work so hard for. Then the cancer even took that sense away, and I think we both handled it differently. And I think that's where distance, and giving each other the space to figure it out, got to be too much space.
So yeah, that was tough. My heart was broken, and my idea of what I thought we had built together and what we were working towards turned out to be wrong. But I also had to stop second-guessing myself--and him--and realize that we were both doing the best we could at the time. There could have been myriad other ways to go about this journey, but we chose what made sense to us at the time--despite the outcome, I have no regrets. And we are moving forward and moving on. And we are, in my humble opinion, doing a really good job parenting Olive through all this.
So yes, there is "moving on". And that's another thing that I won't dissect the details of, not to be coy. But again, I have gotten reinforcement that I will do okay one way or another with my future when I least expected it. And all of that is more goodness that I am just trying to accept and enjoy while not being at all worried about an outcome. As Sinead wrote, (with a wink and a nod to my former appearance)
but Bettye kills here, I Do Not Want What I Haven't Got:
With spirit, I also have to acknowledge the difficulty and reality of facing cancer, knowing that it has taken far too many good people from my life. In these 3 years, I have had friends and coworkers get diagnosed and die. I have had encounters with many who carry around the knowledge that their risks of getting cancer are way too big because of our common genetic mutation. We talk about what that means and how the hell you make these seemingly unreasonable choices, about when enough is enough, about when it's too much...
And again, I face my future. I am afraid and I am not afraid. I am preparing for the worst and hoping for the best. I know what I hope my end of life looks like but am saving for retirement. Because who knows? I will move forward, learn lessons, enjoy, love, and deal with whatever.
(Don't read too much into the lyrics. It's just a beautiful song that makes me feel what all this passage of time is like...)
June 27, 2013
June 26, 2013
3 Years--Mind
This is where I get to walk through the thinking that has churned around in my brain for the last year. Lots of stuff from more cancer to what I want out of life to current events. Sometimes it's hard to separate out the mind from the spirit, so don't read too much into the home I've chosen for different things.
Well, first of all, I wish I could say that I had a day go by when I didn't remember what I went through with this diagnosis. It would be potentially much different if I didn't look down at my chest and see the obvious every day. It's not that I agonize over it. It's just always there. And that's okay, because I am now at a point where I can't fathom how to go about having boobs again. I recently tried on my prosthetics for the first time in probably over a year, and it just changes the whole quality of my body and how I carry myself. I kind of hate to say it, but I think I carry myself with a little more poise these days. Basically, aside from my effing puffy arm, I am very comfortable in my skin these days. I live in a weird in-between world where I am no longer judged by traditional standards. Certainly not something to be jealous of given the circumstances, but it's nice in its own way. I've already covered the physical downsides, so I won't belabor that.
As for the process of thinking itself, that is much better. Most days. Chemo brain is real, my friends, and it comes at a time when you think you're losing your mind anyway. I seriously felt that my worth was diminished in my career and at home because I couldn't stay on top of my game during treatment and really for a year or 2 after that. And I worried it would never come back! But there are signs of a bounce--there have been a few days where everything has just been clicking and I can stay on top of or ahead of where I should be. (Then there are the ones where I don't get anything done because I just can't focus, but they are fewer than before...)
Sometimes I think back on my thought process during diagnosis and treatment and am just sad at how far underwater I felt and how I had no plan of how I wanted to approach the fight. I think if I asked you all, you'd say that I came across as having my shit pretty together, but man, what a joke! I was not cut out for all that at once. By which I'm referring to the cancer itself, the multitudes of decisions that just keep coming and coming throughout the process, parenting a baby, trying to figure out a marriage while adjusting to baby and cancer, working, trying to decide what brand of healthy lifestyle changes I wanted to pursue, the genetic part of the equation, etc. etc. I could just never get to the point where I could become a health warrior and get super dedicated to some sort of new diet/meditation/exercise/whatever regimen, even though that feels like the direction people were encouraging me to go--out of love and good intentions. But knowing that people like to see that new lifestyle/new attitude kind of narrative, not following it and taking charge made me feel I was letting people (and myself) down at times. That was hard.
Not that I wasn't doing some of that stuff. I couldn't fully adopt the approach of curling up in a ball and not dealing with life, either. It's not in my nature to lose it and break down for too long--even if that's what I should've let myself do, I couldn't. I just kept pushing myself and trying to maintain control of whatever I could and maintain the "normal". Thinking about it, that's the biggest reason I chose no reconstruction when it comes down to it--the only way I could take control was to remove the parts of my body that were causing problems and not be at the mercy of a recon process that could go many different directions. The mastectomy, the chemo, and the radiation were all necessary choices for me in my mind--the recon was not, and it was all about the bare necessities at that point. And I was also one of the "I don't want to be a burden" types, even though that drives me nuts in other people. I don't know any other way to have gone through the treatment and recovery because I know I was doing the best that I could, but none of it felt good--I maybe didn't have to give up a lot completely, but losing little pieces everywhere and knowing what you can't keep unchanged is enough to drive you nuts. And to know that it was affecting people around you and they had to pick up those little pieces drives you nuts, too.
There was likely an element of PTSD involved in all of it, too--I don't necessarily go back to the full-on feelings of those moments, but there have been some times that have been close. While so much of it was a blur, my worst moment of anguish, hands-down, was the radiation mapping appt. I never want to feel that way again. That was one of the few times in all of it that I would have described it as "suffering"--that's a hard word to use even now. All of those things I wanted to keep other people from knowing, too. At a time in my life when no one would have questioned me being scared, I still had a very hard time showing it. Not that you can't be both brave and scared at the same time--that is a lesson I am trying to teach Olive these days.
What else do I think about? Oh, let's see... The glaringly obvious nagging thought is recurrence. As of this post I will magically be transported past the 3-yr window that my oncologist said was the highest risk time for me (with triple negative cancer). I will admit, there are plenty of times I had in my head that I wasn't going to get this far. There will always be some fatalistic element in me that expects more cancer, just like it was normal for me to think I'd get it based on family history. And I'm sure it comes partially from my line of work--I have done some funeral planning in my head like any good hospice employee... My biggest hope in all this was to get to see Olive start kindergarten, and I'm on track to make that happen. Then other milestones will come, but the shorter time frames have to be the approach for me. And I don't want that to sound morbid, because it's not! It's about happiness in many things and many ways, appreciating what you have, realizing that nothing is guaranteed but that effort for things you want and value is always worth it.
It's hard to think too far ahead about Olive and her risk in all this. I will just have to hope. The genetic piece of it is still daunting, and I get frustrated with people who don't understand HOW DIFFERENT the risk of cancer is with a BRCA1 mutation compared to the general population. I have to say that Angelina's story going public with her choice was helpful in its own way. When someone with access to all the resources possible also feels that the best choice to reduce risk is to remove her breasts, that should get people's attention. (It's hard for me to get too caught up and upset about how she made reconstruction sound like the obvious route post-mastectomy--I understand boob culture in a whole new way now, and maintaining her image is part of doing the work she wants.)
[Speaking of boob culture, I'm only going to say this once, but it's a little public service announcement on behalf of many other breast cancer warriors. Please think twice about campaigns like "save the tatas", etc. There is so much about the breast cancer messaging that focuses on the parts instead of the person. You just don't find that happening with other diseases and cancers. (Though there is a bowlin' for colons event--is that close?) Anyway, I hope you get what I'm saying, and I don't feel worked up enough about it to stay up on my soapbox very long.]
A lot of this was looking back and talking about my thoughts earlier in the process. What am I thinking now? I'm thinking that no matter what, cancer or no cancer, I'm okay and I'm going to be okay. I'm not under the same weight of it anymore, even knowing it could be part of my reality again at any time. I said it once a long time before (paraphrased from a self-defense lesson), but you have more control over what you fear when you invite it in. I also know that it feels good figuring out my resources now that my life and my home have changed and I'm TCB for myself. I'm working on slowly getting to the point where I can give back to some friends and supporters what they gave me when I needed it--it was all about self-preservation for a while, and it feels good to get beyond that.
There. That's probably enough for now. Tomorrow, Spirit. We've got it, yes we do! We've got it, how 'bout you? That will probably be my favorite part to talk about...
Well, first of all, I wish I could say that I had a day go by when I didn't remember what I went through with this diagnosis. It would be potentially much different if I didn't look down at my chest and see the obvious every day. It's not that I agonize over it. It's just always there. And that's okay, because I am now at a point where I can't fathom how to go about having boobs again. I recently tried on my prosthetics for the first time in probably over a year, and it just changes the whole quality of my body and how I carry myself. I kind of hate to say it, but I think I carry myself with a little more poise these days. Basically, aside from my effing puffy arm, I am very comfortable in my skin these days. I live in a weird in-between world where I am no longer judged by traditional standards. Certainly not something to be jealous of given the circumstances, but it's nice in its own way. I've already covered the physical downsides, so I won't belabor that.
As for the process of thinking itself, that is much better. Most days. Chemo brain is real, my friends, and it comes at a time when you think you're losing your mind anyway. I seriously felt that my worth was diminished in my career and at home because I couldn't stay on top of my game during treatment and really for a year or 2 after that. And I worried it would never come back! But there are signs of a bounce--there have been a few days where everything has just been clicking and I can stay on top of or ahead of where I should be. (Then there are the ones where I don't get anything done because I just can't focus, but they are fewer than before...)
Sometimes I think back on my thought process during diagnosis and treatment and am just sad at how far underwater I felt and how I had no plan of how I wanted to approach the fight. I think if I asked you all, you'd say that I came across as having my shit pretty together, but man, what a joke! I was not cut out for all that at once. By which I'm referring to the cancer itself, the multitudes of decisions that just keep coming and coming throughout the process, parenting a baby, trying to figure out a marriage while adjusting to baby and cancer, working, trying to decide what brand of healthy lifestyle changes I wanted to pursue, the genetic part of the equation, etc. etc. I could just never get to the point where I could become a health warrior and get super dedicated to some sort of new diet/meditation/exercise/whatever regimen, even though that feels like the direction people were encouraging me to go--out of love and good intentions. But knowing that people like to see that new lifestyle/new attitude kind of narrative, not following it and taking charge made me feel I was letting people (and myself) down at times. That was hard.
Not that I wasn't doing some of that stuff. I couldn't fully adopt the approach of curling up in a ball and not dealing with life, either. It's not in my nature to lose it and break down for too long--even if that's what I should've let myself do, I couldn't. I just kept pushing myself and trying to maintain control of whatever I could and maintain the "normal". Thinking about it, that's the biggest reason I chose no reconstruction when it comes down to it--the only way I could take control was to remove the parts of my body that were causing problems and not be at the mercy of a recon process that could go many different directions. The mastectomy, the chemo, and the radiation were all necessary choices for me in my mind--the recon was not, and it was all about the bare necessities at that point. And I was also one of the "I don't want to be a burden" types, even though that drives me nuts in other people. I don't know any other way to have gone through the treatment and recovery because I know I was doing the best that I could, but none of it felt good--I maybe didn't have to give up a lot completely, but losing little pieces everywhere and knowing what you can't keep unchanged is enough to drive you nuts. And to know that it was affecting people around you and they had to pick up those little pieces drives you nuts, too.
There was likely an element of PTSD involved in all of it, too--I don't necessarily go back to the full-on feelings of those moments, but there have been some times that have been close. While so much of it was a blur, my worst moment of anguish, hands-down, was the radiation mapping appt. I never want to feel that way again. That was one of the few times in all of it that I would have described it as "suffering"--that's a hard word to use even now. All of those things I wanted to keep other people from knowing, too. At a time in my life when no one would have questioned me being scared, I still had a very hard time showing it. Not that you can't be both brave and scared at the same time--that is a lesson I am trying to teach Olive these days.
What else do I think about? Oh, let's see... The glaringly obvious nagging thought is recurrence. As of this post I will magically be transported past the 3-yr window that my oncologist said was the highest risk time for me (with triple negative cancer). I will admit, there are plenty of times I had in my head that I wasn't going to get this far. There will always be some fatalistic element in me that expects more cancer, just like it was normal for me to think I'd get it based on family history. And I'm sure it comes partially from my line of work--I have done some funeral planning in my head like any good hospice employee... My biggest hope in all this was to get to see Olive start kindergarten, and I'm on track to make that happen. Then other milestones will come, but the shorter time frames have to be the approach for me. And I don't want that to sound morbid, because it's not! It's about happiness in many things and many ways, appreciating what you have, realizing that nothing is guaranteed but that effort for things you want and value is always worth it.
It's hard to think too far ahead about Olive and her risk in all this. I will just have to hope. The genetic piece of it is still daunting, and I get frustrated with people who don't understand HOW DIFFERENT the risk of cancer is with a BRCA1 mutation compared to the general population. I have to say that Angelina's story going public with her choice was helpful in its own way. When someone with access to all the resources possible also feels that the best choice to reduce risk is to remove her breasts, that should get people's attention. (It's hard for me to get too caught up and upset about how she made reconstruction sound like the obvious route post-mastectomy--I understand boob culture in a whole new way now, and maintaining her image is part of doing the work she wants.)
[Speaking of boob culture, I'm only going to say this once, but it's a little public service announcement on behalf of many other breast cancer warriors. Please think twice about campaigns like "save the tatas", etc. There is so much about the breast cancer messaging that focuses on the parts instead of the person. You just don't find that happening with other diseases and cancers. (Though there is a bowlin' for colons event--is that close?) Anyway, I hope you get what I'm saying, and I don't feel worked up enough about it to stay up on my soapbox very long.]
A lot of this was looking back and talking about my thoughts earlier in the process. What am I thinking now? I'm thinking that no matter what, cancer or no cancer, I'm okay and I'm going to be okay. I'm not under the same weight of it anymore, even knowing it could be part of my reality again at any time. I said it once a long time before (paraphrased from a self-defense lesson), but you have more control over what you fear when you invite it in. I also know that it feels good figuring out my resources now that my life and my home have changed and I'm TCB for myself. I'm working on slowly getting to the point where I can give back to some friends and supporters what they gave me when I needed it--it was all about self-preservation for a while, and it feels good to get beyond that.
There. That's probably enough for now. Tomorrow, Spirit. We've got it, yes we do! We've got it, how 'bout you? That will probably be my favorite part to talk about...
June 25, 2013
3 Years--Body
Welcome to the 3-year anniversary of my breast cancer diagnosis. In honor of 3 years, I am writing 3 posts, having to do with what is often considered the 3 parts of the "whole" person--body, mind, and spirit. It has been 3 years with change being a constant. I almost said the only constant, but then faces of so many good, good people popped into my head that I realized that was totally inaccurate. Anyway, there is plenty more to come, with a recap of necessary events sprinkled throughout to get you up to speed.
Let's start with BODY.
How's the ole container doing, anyway? Well, (and this would be my answer to almost any post-cancer questions,) in some ways great, and in other ways has seen better days. But, to be clear, there has been no sign of additional cancer, so that is the great. Shall I go from the top down?
My hair has returned to its former state, down to about my chin now, basically the same (thick, brown, wavy) with a little more grey mixed in. My skin (face and beyond) still seems to have gotten a little less resilient, but is that just age or is that treatment--I don't know. I'm guessing chemo and radiation are about equivalent to about 10 years of premature aging. Not saying I look haggard for my age, just saying that my baseline changed forever.
On down to the upper airway... in the course of all this, I was diagnosed with sleep apnea, so now I have a cpap to wear at night. The snoring stopped and I rest better, at least, but it's weird.
Then, well, the arms. Specifically, old righty. Still struggling with the lymphedema--getting closer to a better baseline with that, but still visible swelling, and I've had 3 rounds of cellulitis in that arm in the last year. That has been scary. I am continuing to do my own drainage maintenance, wearing compression gear, wrapping at night, some craniosacral therapy appts. I am hoping that advances in surgical lymph node transplant come a little farther soon and are offered a little more locally--I'd have to travel to PA to have the surgery currently. It's chronic condition management, so sometimes I keep up better than others. It is probably the thing about the post-cancer that makes me feel the least normal and seems the most obvious. I hate it. It still makes me angry and resentful sometimes.
And the arm means I will forever have restrictions on the activity I can do and how much I can lift. Sometimes I push it a little, but I'm trying to behave. Now that I have to maintain the house, I've had to hire help for things that I will just not be able to manage. It's a bummer for someone who used to dig holes for a living and likes to do physical things like that...
Then to the chest. Chests have been a topic of public discussion lately, and I'm still out in the world flatter than a man. I have worn my breast prostheses twice that I can recall since my surgery. Ever. I guess I just never got in the habit of having things back on my chest. There is a "club" of sorts for us bilat mastectomy with no reconstruction women, Flat & Fabulous. Many of the members had reconstruction, only to have multiple complications and need to have them reversed, and there is another group of us who never had recon. For those who don't remember the reasons behind my choice, it would have meant multiple other surgeries and clinic visits, longer recovery with more lifting restrictions (while Olive was still a baby), implants were really the only option, and the odd of them making it through radiation without issues was not great. And I was reassured at the time by Ben that he wouldn't want fakies, either. As I hear more from women that did have recon, a straightforward recovery is never a guarantee.
I revisit the decision from time to time for multiple reasons, not the least of which is I'm now single, and it is much different to face the world of dating/relationships with an obvious physical difference. So far I've been lucky enough to have found acceptance, but I am sure there will be some patches of rejection and self-doubt to come. Not that anyone else doesn't face rejection in some variety, but you do have to admit that this is a pretty big absence, especially in the world of sexuality. And I think I will continue to come back to occasionally reassessing the reconstruction question, see what advances are out there, etc. I still don't think I'd do well with implants at any time. I'd worry about the impact on the lymphedema, and I still have a lot of pain issues and don't think that would help things. The one intriguing option is autologous fat transplant (lipo your own fat from other "abundant" areas, inject into the breast area after stretching the skin/creating pockets). But right now, there are very few MDs performing it, so I'd have to travel to Miami multiple times and go through other physical prep. Maybe further down the road.
So yeah, pain--the other issue in my chest area. Seems like I was talking about this a year ago, and really no headway. I've tried a couple of different medications and am due for a pain consult whenever I can get it scheduled. There have been some recent studies out about the high prevalence of post-mastectomy pain and the fact that it is undertreated--it makes me sad to think of how many women are dealing with it. It is often complex, a mix of multiple pain types, and it becomes its own nasty feedback cycle that is often called a complex regional pain syndrome. So we'll see--I, of all people, who teach people about pain all the time, have been undertreating it myself while I know that it actually will make it worse. There are multiple barriers--the same ones we talk to patients and families about all the time! Unfortunately, the least of which is not the stigma associated with taking controlled substance pain medication, getting refills, etc. It's also the reality of trying to increase dosage effectively while dealing with a few days of more side effects--it's hard to miss work right now, and it's especially hard to time it around days that I have Olive time and can't afford to be drowsy, dizzy, etc. But I'll get there, because it wears on me. I don't want it to be the norm in my life.
The rest of the bod has been hanging in there. A lot of the fatigue is gone, and a lot of that has come from a much better regimen of diet and exercise (and I have lost weight and gotten more fit...). Not that I am strict with any plan, but I am doing enough now to bounce back faster. My overall tolerance for long days is still probably less than most people, so I can still hit the wall hard. But I can vividly remember the times when I could barely function during and after treatment, so this is a big improvement. My biggest downfall lately is that I have become a night owl again and have not been getting enough sleep. I blame people that like to call me late and that I like to stay up and talk to ;)--there are worse things!
Random stuff--I will never regain the fat that was removed with the surgery, so I will always look like a rib cage. I am trying to keep my weight down to avoid having a very strange flat top/big belly phenomenon that would look stranger than it may sound... Mosquitoes like me again, esp my ankles. You may recall that there was some time after chemo that they did not come and bite me since I must have been emanating some nasty chemicals. So I guess it's out of my system enough for their taste! Yay? And it may be time for a new tattoo soon. If anyone says "pink ribbon", I will seriously put the hurt on you. For real.
And I send a strange thank you out to my couple of people who have still had me model for them or asked me to model. Apparently what I lack in boobs, I make up for in legs and hair. I try to take those opportunities and seriously try not to be too self-deprecating, because I really do appreciate that my friends encourage me to flaunt what I've still got. Sometimes I can get myself feeling kind of cool about it. I've got a pretty good bubble of self-acceptance and better confidence these days, and that reinforcement at the right times has helped get me there or keep me there. Oh, maybe I should insert a picture of me and my stems. Or gams, if you prefer. I've been joking that I should add "waist-down model" to my resume...
In honor of the other women that have recently fought to show mastectomy pictures on Facebook and normalize things, I was going to post pics of my scars but am hesitating. Scars, tiny tattoos, a perpetual tan in my radiation area, and ribs, ribs, ribs, but I also haven't had them artfully shot like the Scar Project.
I'll get more into the post-cancer mindset in the MIND post and talk about the recurrence thing, etc. And many other thoughts. I know you can hardly wait.
Let's start with BODY.
How's the ole container doing, anyway? Well, (and this would be my answer to almost any post-cancer questions,) in some ways great, and in other ways has seen better days. But, to be clear, there has been no sign of additional cancer, so that is the great. Shall I go from the top down?
My hair has returned to its former state, down to about my chin now, basically the same (thick, brown, wavy) with a little more grey mixed in. My skin (face and beyond) still seems to have gotten a little less resilient, but is that just age or is that treatment--I don't know. I'm guessing chemo and radiation are about equivalent to about 10 years of premature aging. Not saying I look haggard for my age, just saying that my baseline changed forever.
On down to the upper airway... in the course of all this, I was diagnosed with sleep apnea, so now I have a cpap to wear at night. The snoring stopped and I rest better, at least, but it's weird.
Then, well, the arms. Specifically, old righty. Still struggling with the lymphedema--getting closer to a better baseline with that, but still visible swelling, and I've had 3 rounds of cellulitis in that arm in the last year. That has been scary. I am continuing to do my own drainage maintenance, wearing compression gear, wrapping at night, some craniosacral therapy appts. I am hoping that advances in surgical lymph node transplant come a little farther soon and are offered a little more locally--I'd have to travel to PA to have the surgery currently. It's chronic condition management, so sometimes I keep up better than others. It is probably the thing about the post-cancer that makes me feel the least normal and seems the most obvious. I hate it. It still makes me angry and resentful sometimes.
And the arm means I will forever have restrictions on the activity I can do and how much I can lift. Sometimes I push it a little, but I'm trying to behave. Now that I have to maintain the house, I've had to hire help for things that I will just not be able to manage. It's a bummer for someone who used to dig holes for a living and likes to do physical things like that...
Then to the chest. Chests have been a topic of public discussion lately, and I'm still out in the world flatter than a man. I have worn my breast prostheses twice that I can recall since my surgery. Ever. I guess I just never got in the habit of having things back on my chest. There is a "club" of sorts for us bilat mastectomy with no reconstruction women, Flat & Fabulous. Many of the members had reconstruction, only to have multiple complications and need to have them reversed, and there is another group of us who never had recon. For those who don't remember the reasons behind my choice, it would have meant multiple other surgeries and clinic visits, longer recovery with more lifting restrictions (while Olive was still a baby), implants were really the only option, and the odd of them making it through radiation without issues was not great. And I was reassured at the time by Ben that he wouldn't want fakies, either. As I hear more from women that did have recon, a straightforward recovery is never a guarantee.
I revisit the decision from time to time for multiple reasons, not the least of which is I'm now single, and it is much different to face the world of dating/relationships with an obvious physical difference. So far I've been lucky enough to have found acceptance, but I am sure there will be some patches of rejection and self-doubt to come. Not that anyone else doesn't face rejection in some variety, but you do have to admit that this is a pretty big absence, especially in the world of sexuality. And I think I will continue to come back to occasionally reassessing the reconstruction question, see what advances are out there, etc. I still don't think I'd do well with implants at any time. I'd worry about the impact on the lymphedema, and I still have a lot of pain issues and don't think that would help things. The one intriguing option is autologous fat transplant (lipo your own fat from other "abundant" areas, inject into the breast area after stretching the skin/creating pockets). But right now, there are very few MDs performing it, so I'd have to travel to Miami multiple times and go through other physical prep. Maybe further down the road.
So yeah, pain--the other issue in my chest area. Seems like I was talking about this a year ago, and really no headway. I've tried a couple of different medications and am due for a pain consult whenever I can get it scheduled. There have been some recent studies out about the high prevalence of post-mastectomy pain and the fact that it is undertreated--it makes me sad to think of how many women are dealing with it. It is often complex, a mix of multiple pain types, and it becomes its own nasty feedback cycle that is often called a complex regional pain syndrome. So we'll see--I, of all people, who teach people about pain all the time, have been undertreating it myself while I know that it actually will make it worse. There are multiple barriers--the same ones we talk to patients and families about all the time! Unfortunately, the least of which is not the stigma associated with taking controlled substance pain medication, getting refills, etc. It's also the reality of trying to increase dosage effectively while dealing with a few days of more side effects--it's hard to miss work right now, and it's especially hard to time it around days that I have Olive time and can't afford to be drowsy, dizzy, etc. But I'll get there, because it wears on me. I don't want it to be the norm in my life.
The rest of the bod has been hanging in there. A lot of the fatigue is gone, and a lot of that has come from a much better regimen of diet and exercise (and I have lost weight and gotten more fit...). Not that I am strict with any plan, but I am doing enough now to bounce back faster. My overall tolerance for long days is still probably less than most people, so I can still hit the wall hard. But I can vividly remember the times when I could barely function during and after treatment, so this is a big improvement. My biggest downfall lately is that I have become a night owl again and have not been getting enough sleep. I blame people that like to call me late and that I like to stay up and talk to ;)--there are worse things!
Random stuff--I will never regain the fat that was removed with the surgery, so I will always look like a rib cage. I am trying to keep my weight down to avoid having a very strange flat top/big belly phenomenon that would look stranger than it may sound... Mosquitoes like me again, esp my ankles. You may recall that there was some time after chemo that they did not come and bite me since I must have been emanating some nasty chemicals. So I guess it's out of my system enough for their taste! Yay? And it may be time for a new tattoo soon. If anyone says "pink ribbon", I will seriously put the hurt on you. For real.
And I send a strange thank you out to my couple of people who have still had me model for them or asked me to model. Apparently what I lack in boobs, I make up for in legs and hair. I try to take those opportunities and seriously try not to be too self-deprecating, because I really do appreciate that my friends encourage me to flaunt what I've still got. Sometimes I can get myself feeling kind of cool about it. I've got a pretty good bubble of self-acceptance and better confidence these days, and that reinforcement at the right times has helped get me there or keep me there. Oh, maybe I should insert a picture of me and my stems. Or gams, if you prefer. I've been joking that I should add "waist-down model" to my resume...
In honor of the other women that have recently fought to show mastectomy pictures on Facebook and normalize things, I was going to post pics of my scars but am hesitating. Scars, tiny tattoos, a perpetual tan in my radiation area, and ribs, ribs, ribs, but I also haven't had them artfully shot like the Scar Project.
I'll get more into the post-cancer mindset in the MIND post and talk about the recurrence thing, etc. And many other thoughts. I know you can hardly wait.
February 11, 2013
Recreate
You know, sometimes you should know when to take the u-turn down memory lane and when to stop yourself. I went further down the road then I should have today and it left me in a mood.
In trying to remember my chemo regimen to share with another unfortunate diagnosee, I read back through far more of these entries than I should have. It was like watching myself slowly get deconstructed. Remembered how I got my funky scars, the hospital trips, the waiting, the worrying and uncertainty. Deconstructed my relationships with others during that time, too, and am being hard on myself in hindsight.
I know it's not helpful and not necessary, but it's like watching your own car wreck and you can't turn away. Even though the next chapter is good, at least so far! It's just leaving me feeling exposed again--bald, boobless, unable to hide weaknesses and hide the impact of it all, even though I have done a lot of rebuilding since that time. Not sure what to do with it right now. I'm feeling the losses of that whole period. Even recreating that time feels like there's a lot missing, that I'm just getting my narrow field of vision and I want the greater context so I can find more meaning in it.
Don't get me wrong--I have much happiness now. I am okay, I am good. I have a different sense of empathy now that I hope makes me better at being there for others. I can live much more in the moment. Today I am just acutely aware that while my bad moments may have passed for now, they are very active for others, and I feel it in my bones. Hold on tight, my friends and loved ones--we will get through it soon.
June 25, 2012
Survival Skills
Two years ago was my diagnosis. I am a "2-year survivor".
Last night Ben asked me if it was worth it. My first reaction was a surprised laugh. Then it got heavy. The answer is "yes", but it's a harder answer than I wish it was.
I wish this was an inspiring tale of how I finished my grueling treatment (about a year's worth), got back into life, and conquered the world. You know, finished a triathlon or climbed a mountain. Raised tens of thousands of dollars for charity. The stuff of the inspirational movies and books.
But I am no poster child. My 2 years have been a one-step-forward, one-step-back kind of story. I am not done with it. Sometimes I get angry that only the pretty picture is put forward, not the one that involves the chronic illness side of things. I've talked to other survivors, and the easy answer they all give is that they are fine. There is little sense of permission in the world to not be fine when the worst of it is over, and especially not permission to share that and be vocal. I feel that many times, too (but I'm getting over it for this post).
We are managing. It is worth it because at the end of the day, a get more time with the people I love and want to be around. But I want to be further along than I am--I keep waiting for the end of the tunnel, because I have seen light for a while but am still too far away to be standing in it. This was the time when things were supposed to be back to normal and the worst of the longer effects would be done.
So here is where I'm at:
My day-to-day is fairly normal in many senses. I can go along pretty well, my cognition is mostly back where I want it with some very mild short-term memory issues. My energy can sustain me through the day, but when I'm done at night, I'm done. I am totally spent. My body aches, and I become tender to the touch in my surgical area/chest. Sleep is either like a rock or really restless with little in between, and Ben says I snore worse than I ever have and we wind up sleeping apart sometimes because of it. I can sleep in 2 positions--on my back or on my left side, and I need to try to keep my right arm elevated in either position. Which brings me to the right arm. The lymphedema is still going strong, making it big and puffy, heavy, and sometimes achy in the joints. It has resisted efforts with OT so far to get the swelling down and keep it down, especially in my hand. I have to wear compression garments (glove and sleeve) day and night, though sometimes I take breaks because I am sick of it. I have manual drainage to do on a daily basis (if I can muster up the gumption).
I've had that, shingles x2, and the doozy of a cellulitis infection in my right arm. My arm is "immunocompromised" even if the rest of me is not. I am limited in my physical activity, am having a hard time lifting Olive, and I just realized the other day that I will likely never be able to get back to direct bedside nursing because of lifting restrictions.
It's a regular process of adjusting expectations. But I guess I'm stubborn.
What am I doing that is good? Well, I've been getting to do things with some good friends when I can. I'm trying to get to yoga once a week, and I hope I can work up to twice weekly, and then taking the evening to myself. I've been working hard--maybe a little too hard. Getting in a lot of Olive time.
What do I need to work on? As I said, at night I am just spent. That has meant I have crapped out on a lot of phone conversations, catching up with my family, keeping up with holidays and birthdays. That makes me feel kinda shitty. I have another pile of things waiting to be taken care of that I just haven't gotten to--it's plenty to get Olive to bed, do dishes/laundry, and then space out before I go to bed. I hope the people that know and love me can forgive me for checking out and being inconsistent for the last couple of years. It means the world to me to have felt the love an support I have, and I hope I get back to where I am fully reciprocating.
And then there is the looming worry about recurrence. There is no good feeling about having the sword of Damocles over your head. The best picture that I have been given is that if I can make it through one more year without recurrence, I will be at much lower risk. That makes for a very strange year of waiting for the other shoe to drop. There is a part of me that always needs to keep that in my head so I could be prepared. I can't even commit to getting a dog right now.
Okay, that's enough. There are so many lovely things in life. I have fought hard to see them, and I have earned every small moment of goodness I can savor. I will savor the love that has poured out to me from so many good people. I will keep working on being the person I want to be.
I hope the road to get there is long.
Last night Ben asked me if it was worth it. My first reaction was a surprised laugh. Then it got heavy. The answer is "yes", but it's a harder answer than I wish it was.
I wish this was an inspiring tale of how I finished my grueling treatment (about a year's worth), got back into life, and conquered the world. You know, finished a triathlon or climbed a mountain. Raised tens of thousands of dollars for charity. The stuff of the inspirational movies and books.
But I am no poster child. My 2 years have been a one-step-forward, one-step-back kind of story. I am not done with it. Sometimes I get angry that only the pretty picture is put forward, not the one that involves the chronic illness side of things. I've talked to other survivors, and the easy answer they all give is that they are fine. There is little sense of permission in the world to not be fine when the worst of it is over, and especially not permission to share that and be vocal. I feel that many times, too (but I'm getting over it for this post).
We are managing. It is worth it because at the end of the day, a get more time with the people I love and want to be around. But I want to be further along than I am--I keep waiting for the end of the tunnel, because I have seen light for a while but am still too far away to be standing in it. This was the time when things were supposed to be back to normal and the worst of the longer effects would be done.
So here is where I'm at:
My day-to-day is fairly normal in many senses. I can go along pretty well, my cognition is mostly back where I want it with some very mild short-term memory issues. My energy can sustain me through the day, but when I'm done at night, I'm done. I am totally spent. My body aches, and I become tender to the touch in my surgical area/chest. Sleep is either like a rock or really restless with little in between, and Ben says I snore worse than I ever have and we wind up sleeping apart sometimes because of it. I can sleep in 2 positions--on my back or on my left side, and I need to try to keep my right arm elevated in either position. Which brings me to the right arm. The lymphedema is still going strong, making it big and puffy, heavy, and sometimes achy in the joints. It has resisted efforts with OT so far to get the swelling down and keep it down, especially in my hand. I have to wear compression garments (glove and sleeve) day and night, though sometimes I take breaks because I am sick of it. I have manual drainage to do on a daily basis (if I can muster up the gumption).
I've had that, shingles x2, and the doozy of a cellulitis infection in my right arm. My arm is "immunocompromised" even if the rest of me is not. I am limited in my physical activity, am having a hard time lifting Olive, and I just realized the other day that I will likely never be able to get back to direct bedside nursing because of lifting restrictions.
It's a regular process of adjusting expectations. But I guess I'm stubborn.
What am I doing that is good? Well, I've been getting to do things with some good friends when I can. I'm trying to get to yoga once a week, and I hope I can work up to twice weekly, and then taking the evening to myself. I've been working hard--maybe a little too hard. Getting in a lot of Olive time.
What do I need to work on? As I said, at night I am just spent. That has meant I have crapped out on a lot of phone conversations, catching up with my family, keeping up with holidays and birthdays. That makes me feel kinda shitty. I have another pile of things waiting to be taken care of that I just haven't gotten to--it's plenty to get Olive to bed, do dishes/laundry, and then space out before I go to bed. I hope the people that know and love me can forgive me for checking out and being inconsistent for the last couple of years. It means the world to me to have felt the love an support I have, and I hope I get back to where I am fully reciprocating.
And then there is the looming worry about recurrence. There is no good feeling about having the sword of Damocles over your head. The best picture that I have been given is that if I can make it through one more year without recurrence, I will be at much lower risk. That makes for a very strange year of waiting for the other shoe to drop. There is a part of me that always needs to keep that in my head so I could be prepared. I can't even commit to getting a dog right now.
Okay, that's enough. There are so many lovely things in life. I have fought hard to see them, and I have earned every small moment of goodness I can savor. I will savor the love that has poured out to me from so many good people. I will keep working on being the person I want to be.
I hope the road to get there is long.
November 22, 2011
50/50
Oh, you know, we've been busy in the last weeks. Usual stuff and everyone's well. I could brag about Olive stuff, but you'll just have to come see her for yourself. I had a few very busy weeks at work and am very happy that it's a shorter holiday week--one might say that I'm "thankful"! We'll have a nice day up in Wausau to see my immediate fam, and then to Milwaukee for a couple of days while Ben finishes crafting something...
I went to see the movie 50/50 a few days ago. For those of you not familiar, it's a movie about a young guy (late-20s?) that is diagnosed with a rare cancer and is given a 50/50 survival rate. You see him through the diagnosis, chemo, surgery. It's a dramedy. It was alright--not a heavy hitter as far as movies go, but to watch the cancer journey from the outside was tough even if they glossed over a lot. I was crying pretty decently at different times. The hardest parts? Well, you get to see the perspective of the people supporting him through it--his best friend, his parents--and to feel the powerlessness, how much they want to do SOMETHING to make it better but struggle, and how it feels to them when he's not telling them what's going on. It was also hard to watch him panic before going into surgery and just think back about how numb I must have been at the time of mine.
So what were my takeaways? Well, mostly about the feelings of those around you when you're not telling them how you're really feeling. There was a part of this journey when I just couldn't hide how hard it was for anyone--it was written all over my pained, green face. But now, when I'm better and am trying hard to get back to normal, I forget that nobody can tell what it's like to be me at the end of the day, that it sucks that enjoying a normal day with Olive & Ben takes a lot out of me and makes me hurt at the end of the day... So I'm talking about it, including making it clear to Ben that I'm tagging out for a break because I physically need one. I don't want to belabor what it's like, but my upper body is fragile by the end of the day.
The other piece that I'm still thinking about: at the end of the movie, his surgery was kind of set up as a success, meaning that he was done with it all. He had a clean slate and came out on the good end of the 50%. I don't feel like the end of treatment was a clean slate for me. There is too much carry-over into how I feel every day to make it feel like a fresh start--it's still recovery. I guess I could just take the mindset that it's a new chance to make the most of my life, and I feel like I am in a lot of ways. But dang, it would be nice to feel reinvigorated. I am not going to be taking on heroic, inspiring, survivor-y things for a while because by the end of the day, I have given all I can. I would love to get to a point where I get beyond that and where I can start reaching out and doing for others. I hope that the coming seasons will bring that around for me.
I went to see the movie 50/50 a few days ago. For those of you not familiar, it's a movie about a young guy (late-20s?) that is diagnosed with a rare cancer and is given a 50/50 survival rate. You see him through the diagnosis, chemo, surgery. It's a dramedy. It was alright--not a heavy hitter as far as movies go, but to watch the cancer journey from the outside was tough even if they glossed over a lot. I was crying pretty decently at different times. The hardest parts? Well, you get to see the perspective of the people supporting him through it--his best friend, his parents--and to feel the powerlessness, how much they want to do SOMETHING to make it better but struggle, and how it feels to them when he's not telling them what's going on. It was also hard to watch him panic before going into surgery and just think back about how numb I must have been at the time of mine.
So what were my takeaways? Well, mostly about the feelings of those around you when you're not telling them how you're really feeling. There was a part of this journey when I just couldn't hide how hard it was for anyone--it was written all over my pained, green face. But now, when I'm better and am trying hard to get back to normal, I forget that nobody can tell what it's like to be me at the end of the day, that it sucks that enjoying a normal day with Olive & Ben takes a lot out of me and makes me hurt at the end of the day... So I'm talking about it, including making it clear to Ben that I'm tagging out for a break because I physically need one. I don't want to belabor what it's like, but my upper body is fragile by the end of the day.
The other piece that I'm still thinking about: at the end of the movie, his surgery was kind of set up as a success, meaning that he was done with it all. He had a clean slate and came out on the good end of the 50%. I don't feel like the end of treatment was a clean slate for me. There is too much carry-over into how I feel every day to make it feel like a fresh start--it's still recovery. I guess I could just take the mindset that it's a new chance to make the most of my life, and I feel like I am in a lot of ways. But dang, it would be nice to feel reinvigorated. I am not going to be taking on heroic, inspiring, survivor-y things for a while because by the end of the day, I have given all I can. I would love to get to a point where I get beyond that and where I can start reaching out and doing for others. I hope that the coming seasons will bring that around for me.
November 5, 2011
Halloween
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