Here's the thing. Cancer and mastectomies and reconstruction surgeries are scary. I get that. And when you talk to people about it, their first instinct is to comfort you and reassure you. So somewhere along the way, people create these groups and agencies and networks to support women (and men) going through this. They developed plans to help out, things to say to support and ways to help out.
But having DCIS, going through a mastectomy, reconstruction and subsequent surgeries, isn't a big pink ribbon. It's not being glad that it's 'over'. It's not getting on with life and being glad it wasn't cancer/glad I'm alive. It's just not. Not for me and not for a large group of people out there.
My scars are ugly. They're never going to be pretty. But they tell the story of who I am and what I've gone through. The fact that I went through this emotional roller coaster and it wasn't cancer, isn't comforting. It's just not. It never will be. I'm not over it and won't be over it for a long time, if ever.
I understand that people around me feel uncomfortable and they say and do things in the hopes of making me feel more comfortable and in turn them more comfortable. But honestly, it makes me feel worse. Like I should just sweep everything that I went through under the rug, don't talk about it and move on...pretend it never happened.
Guess what?
I had DCIS.
I had a 62% chance of breast cancer in my life.
I had a mastectomy.
I had reconstruction that resulted in big dark ugly scars.
I had a nipple & revision surgery.
I lost most of both of the revised nipples.
I'm not secure, safe because cancer is gone.
I deal with the repercussions of my choices daily.
I'm not comfortable in my skin currently.
I'm afraid to exercise.
I'm afraid to be happy.
I'm afraid to have the rug pulled out from under me again.
I'm...afraid.
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Thursday, May 29, 2014
Friday, May 09, 2014
So where am I at?
After all that has gone on, where am I at?
Honestly...and I am going to be honest here...
I weighed myself today and I'm 226. My lowest ever was 188 and I was hanging around 192-195 for the first 6 months of 2013. I have 1 pair of work pants that I can get on, but they're so tight that I'm uncomfortable by the end of the day. I have 2 pair of jeans that fit me. I have 5 or 6 shirts that fit for wearing out. But mostly I wear yoga pants and old YMCA t-shirts.
I developed planter fascitis in my left foot. So running...nope. Walking...nope. Some days, by the end of the day I can barely walk on it. I'm trying to use the store bought inserts and being aware of my foot ware and doing the exercises I found on the net. The gym has been non existent.
Eating. Sigh. I am full out sugar addicted again. FULL OUT. Pete has done so well with his weight loss and is hovering at 162-167 with a really fast metabolism. He makes cookies about twice a week and keeps them on the counter. I try not to indulge and honestly he would stop if I asked, but I don't want my stuff to impact him. I try to have a green salad with lots of veggies and some protein in the form of hard boiled egg, cheese or tuna on it for lunch every day. So that's on target. But I'm not hungry for breakfast since I'm not at the gym and I struggle with what to eat. Dinner I'm pretty good also. It's the snacking. Licorice, cookies, cake, PB cups...snacking.
I still have days where I question the choices I made. There is a huge movement that says that doctors are 'pushing' mastectomies for people like me, when they're not really needed. The instance of cancer deaths is down, but there is testing that shows that the type of pre-cancer that I had, doesn't often turn into full blown breast cancer. The difference for me, is that I had the family history and the 60% chance of it actually going to cancer. Sometimes it's hard to look past the what ifs and just be at peace with my decision. The choices that I made had such an impact on so many aspects of my life and impacted Pete too. And I need to stress that he is supportive of whatever choice I wanted to make, but that's not to say that there were some negatives that came with it.
I'm so freaking frustrated with myself! My body image is bad again. I don't want to shop for clothes, that's why I haven't bought very much bigger things. Shopping isn't fun. In fact, I've walked in several stores, only to walk back out again because I don't have the mental fortitude to dig in and start trying on clothes. Not only have I gained weight, but my shape has changed again. I realize how small my hips had gotten when I lost weight. They're back to being big and it makes finding clothes really really hard (crying while writing this and thinking about it).
I've come to realize that what worked for me before in losing weight, isn't going to work now. And I'm pissed off that I have to figure out a new plan. Pissed. But sitting here and bitching about the whole thing isn't going to change it, is it? I need to figure out that plan. Soon.
Honestly...and I am going to be honest here...
I weighed myself today and I'm 226. My lowest ever was 188 and I was hanging around 192-195 for the first 6 months of 2013. I have 1 pair of work pants that I can get on, but they're so tight that I'm uncomfortable by the end of the day. I have 2 pair of jeans that fit me. I have 5 or 6 shirts that fit for wearing out. But mostly I wear yoga pants and old YMCA t-shirts.
I developed planter fascitis in my left foot. So running...nope. Walking...nope. Some days, by the end of the day I can barely walk on it. I'm trying to use the store bought inserts and being aware of my foot ware and doing the exercises I found on the net. The gym has been non existent.
Eating. Sigh. I am full out sugar addicted again. FULL OUT. Pete has done so well with his weight loss and is hovering at 162-167 with a really fast metabolism. He makes cookies about twice a week and keeps them on the counter. I try not to indulge and honestly he would stop if I asked, but I don't want my stuff to impact him. I try to have a green salad with lots of veggies and some protein in the form of hard boiled egg, cheese or tuna on it for lunch every day. So that's on target. But I'm not hungry for breakfast since I'm not at the gym and I struggle with what to eat. Dinner I'm pretty good also. It's the snacking. Licorice, cookies, cake, PB cups...snacking.
I still have days where I question the choices I made. There is a huge movement that says that doctors are 'pushing' mastectomies for people like me, when they're not really needed. The instance of cancer deaths is down, but there is testing that shows that the type of pre-cancer that I had, doesn't often turn into full blown breast cancer. The difference for me, is that I had the family history and the 60% chance of it actually going to cancer. Sometimes it's hard to look past the what ifs and just be at peace with my decision. The choices that I made had such an impact on so many aspects of my life and impacted Pete too. And I need to stress that he is supportive of whatever choice I wanted to make, but that's not to say that there were some negatives that came with it.
I'm so freaking frustrated with myself! My body image is bad again. I don't want to shop for clothes, that's why I haven't bought very much bigger things. Shopping isn't fun. In fact, I've walked in several stores, only to walk back out again because I don't have the mental fortitude to dig in and start trying on clothes. Not only have I gained weight, but my shape has changed again. I realize how small my hips had gotten when I lost weight. They're back to being big and it makes finding clothes really really hard (crying while writing this and thinking about it).
I've come to realize that what worked for me before in losing weight, isn't going to work now. And I'm pissed off that I have to figure out a new plan. Pissed. But sitting here and bitching about the whole thing isn't going to change it, is it? I need to figure out that plan. Soon.
Wednesday, December 11, 2013
What I've Learned in 5 Months
Five months ago I was in surgery. A long surgery that's colored every part of my life since. I've spent a long time in the last few weeks considering the choice that I made and how my life has changed. And while there are days I'll tell you that it was the worst thing that ever happened to me, the reality is that not all of it was negative.
1. I learned who really cared for me in various ways. Reality is that when someone has a life altering event, most people think about how sad it is. Not all of those people offer to help or even support. Some just can't and others don't want to be bothered. I learned that I have an awesome husband who will go to the ends of the Earth for me. I have caring co-workers who organized a lot of help. I have friends who live no where near me, but were with me every moment of every day.
2. I learned that I can't do it all and that's ok. The world will not end because I didn't make my famous potato hotdish (Translation - Casserole. Remember, I'm midwestern.) for the Christmas Potluck. It will not end because I didn't do cute little Halloweek bags for my trick or treaters. And It will not end because the bathroom counter looks like a tornado for 3 days straight. Family and friends will be ok not getting a Christmas card this year.
3. I learned that I need to let my husband into my head a little bit. That withholding my thoughts is akin to turning my back to him when I need him most and then getting mad when he doesn't help. IO learned that out of a sad/difficult thing, cvan come a new awareness and awakening of a realitionship. I learned that we love each other...a lot.
4. I learned that while my brain may feel ok, my body doesn't and I need to listen to it. I need to go slowly and have patience with myself. That nothing goes from 1-100 without all the other 98 numbers inbetween. I learned that even 5 months along, it's sitll ok to nap a couple of hours a day and spend time relaxing to recharge.
5. I learned that my relationship with my family is important. My realtionship with my Mom is at times difficult because of how different we are, but that when it comes down to it, we are similar also. I learned that my Grandma, all 89 years of her, will help out any way she can.
6. I learned that I could do a better job advocating for myself. Instead of letting myself get to the crying every day stage, I could have admitted to the plastic surgeon any number of times that I needed help. Instead of letting Pete do my talking, I could habe been more vocal about my needs and wants and sought out a solution.
7. I learned that I do much better when I have an action plan of how to fix things. Whether it's validating emotions and what I know to be true around them or planning on exercising on certain days, it's a plan.
I know that there's way more that I could list out. But those are the big ones. I suppose that if I posted again in July 2014 (which I'm sure to do) I'll have more things that I've learned.
1. I learned who really cared for me in various ways. Reality is that when someone has a life altering event, most people think about how sad it is. Not all of those people offer to help or even support. Some just can't and others don't want to be bothered. I learned that I have an awesome husband who will go to the ends of the Earth for me. I have caring co-workers who organized a lot of help. I have friends who live no where near me, but were with me every moment of every day.
2. I learned that I can't do it all and that's ok. The world will not end because I didn't make my famous potato hotdish (Translation - Casserole. Remember, I'm midwestern.) for the Christmas Potluck. It will not end because I didn't do cute little Halloweek bags for my trick or treaters. And It will not end because the bathroom counter looks like a tornado for 3 days straight. Family and friends will be ok not getting a Christmas card this year.
3. I learned that I need to let my husband into my head a little bit. That withholding my thoughts is akin to turning my back to him when I need him most and then getting mad when he doesn't help. IO learned that out of a sad/difficult thing, cvan come a new awareness and awakening of a realitionship. I learned that we love each other...a lot.
4. I learned that while my brain may feel ok, my body doesn't and I need to listen to it. I need to go slowly and have patience with myself. That nothing goes from 1-100 without all the other 98 numbers inbetween. I learned that even 5 months along, it's sitll ok to nap a couple of hours a day and spend time relaxing to recharge.
5. I learned that my relationship with my family is important. My realtionship with my Mom is at times difficult because of how different we are, but that when it comes down to it, we are similar also. I learned that my Grandma, all 89 years of her, will help out any way she can.
6. I learned that I could do a better job advocating for myself. Instead of letting myself get to the crying every day stage, I could have admitted to the plastic surgeon any number of times that I needed help. Instead of letting Pete do my talking, I could habe been more vocal about my needs and wants and sought out a solution.
7. I learned that I do much better when I have an action plan of how to fix things. Whether it's validating emotions and what I know to be true around them or planning on exercising on certain days, it's a plan.
I know that there's way more that I could list out. But those are the big ones. I suppose that if I posted again in July 2014 (which I'm sure to do) I'll have more things that I've learned.
Wednesday, October 23, 2013
207; Admitting Defeat
If I'm nothing else here, I'm honest about what's going on in my life. I want to know a year from now that I got through this and how I did it. So I'm saring the darker side of me, recording it all here. I'm hopeful that I can come back to this and see how far I've come.
My plastic surgeon thinks that my left nipple will heal ok. He thinks that the healing that I see as problematic is normal and I just need to ride it out. If something does happen, he can create a new one. And with that I am at once relieved and angry. I'm angry that I lost part of it and that it's just ok. I'm relieved that I'm not losing more of it. This is not how I imagined recovery.
He also shot up the scar on my chest with cortisone. He says that he uses a tiny needle so it doesn't hurt. But damn, did that little needle hurt and the solution hurt going in. It feels like there is constant pressure on my sternum normally and with that it was very irritated.
I still have to keep all my scars covered with tape, a silicone pad or this Scar Guard product that I brush on. I make raised, red, unappealing scars. Just another notch in the bedpost of things that didn't go as planned with surgery.
Yesterday when I got home from the doctor's appointment I was mentally exhausted. I had a headache, my chest hurt and all I wanted to do was sleep. My insomnia has been rearing it's ugly head and I'm averaging about 3-4 hours a night. Even though my "office" is in the bedroom across the hall from mine, it was to far away yesterday. The thought of pushing the button to turn on the computer was more that I could physically do. The idea that I'd have to use my brain for something other than sleep and taking migraine meds was impossible. So I didn't.
When Pete got home, I had been laying in bed, sleeping off and on and taking migraine meds. He asked me how I was doing and paused. He finally asked if I thought that I was depressed. He says that I'm holding back with him and not telling him what's going through my head. It makes him feel like an outsider in my world. This is not my intention and I got angry. I believe that potentially, if I say all these things out loud they are true. And having them be true is scary. Very scary.
So I made an appointment with my doctor today about my insomnia, my migraines and to talk about the possibility that I am depressed. I admit defeat in this emotional battle of being a Previvor and having surgery. Defeat.
My plastic surgeon thinks that my left nipple will heal ok. He thinks that the healing that I see as problematic is normal and I just need to ride it out. If something does happen, he can create a new one. And with that I am at once relieved and angry. I'm angry that I lost part of it and that it's just ok. I'm relieved that I'm not losing more of it. This is not how I imagined recovery.
He also shot up the scar on my chest with cortisone. He says that he uses a tiny needle so it doesn't hurt. But damn, did that little needle hurt and the solution hurt going in. It feels like there is constant pressure on my sternum normally and with that it was very irritated.
I still have to keep all my scars covered with tape, a silicone pad or this Scar Guard product that I brush on. I make raised, red, unappealing scars. Just another notch in the bedpost of things that didn't go as planned with surgery.
Yesterday when I got home from the doctor's appointment I was mentally exhausted. I had a headache, my chest hurt and all I wanted to do was sleep. My insomnia has been rearing it's ugly head and I'm averaging about 3-4 hours a night. Even though my "office" is in the bedroom across the hall from mine, it was to far away yesterday. The thought of pushing the button to turn on the computer was more that I could physically do. The idea that I'd have to use my brain for something other than sleep and taking migraine meds was impossible. So I didn't.
When Pete got home, I had been laying in bed, sleeping off and on and taking migraine meds. He asked me how I was doing and paused. He finally asked if I thought that I was depressed. He says that I'm holding back with him and not telling him what's going through my head. It makes him feel like an outsider in my world. This is not my intention and I got angry. I believe that potentially, if I say all these things out loud they are true. And having them be true is scary. Very scary.
So I made an appointment with my doctor today about my insomnia, my migraines and to talk about the possibility that I am depressed. I admit defeat in this emotional battle of being a Previvor and having surgery. Defeat.
Thursday, October 17, 2013
206; Doctors Offices Are Weird
Did I ever tell you about the time I got locked in the bathroom?
It was about 2 weeks after surgey and Pete took me to an appointment at the professional building by the hospital. On the way in I told him I had to use the bathroom. We stopped, he went in his and I pushed the door in for mine. When I was done I grabbed the handle to pull the door. Holy buckets it was heavy. I pulled and got it open about 1 inch before it closed. I sighed and pulled again. This time, 2 inches and closed. I looked for a handicapped door opener and found that I was in a bathroom without one.
Sigh.
I got my cell phone out and sent Pete a message telling him I was stuck. Then I watched it error out because there was no service. I was stuck. I finally opened the door an inch and yelled for Pete. My knight in shining armor rescued me from the potty. How glamorous!
It occurred to me today, as I was writing this in my head, that a whole bunch of strangers know a lot about my private bits. Probably almost as much as I've told my family (other than Pete). It's weird and at the same time almost empowering to share.
I had my follow up with my plastic surgeon about my fipples. I didn't sleep well last night and by the time of the afternoon appointment I had a killer headache. I realized I had been gritting my teeth and locking my jaw. The stress has been hard on my TMJ. As I waited to be called back, I couldn't help but wonder how they fix a fipple? Or can they? Is it just a lost cause? Would he fix it in the office? Should I have brought Pete? I think waiting is the hardest part, my mind wanders and generally not to good things.
Eventually I was seen. He cut away the (gross alert) dead skin and scabs. Yuk. He said I'm just a poor healer who makes thick scars. Great, another think to add to my list of physical issues. The nipple will have to heal in its own. So band aids with ointment for the next month.
As for the thick scars? I go back in 2 weeks for cortisone shots in them to hopefully flatten them out. I also have to wear tape or silicone scar pads on all my scars for the next 30 or do days. 24 hours a day. All. The. Time. Apparently even the tape helps flatten the scar because of the pressure. Fun. Silicone sheets are $15-$30 a box and my body requires the whole box (told you I was cut hip to hip). The sheets should last a week and tape needs to be reapplied every day. And let's hope that I don't develop more blisters from the adhesive on the pads or the tape. Fun.
Signed,
The poor healing, thick scarring woman
Monday, September 23, 2013
2 Steps Forward, 1 Step back
Surgery on Friday went well, at least I think so. If I talked to the doctor after surgery, I have no memory of it. Pete says that he told them it went well and everything was good.
The large lump on my left chest area was dying fatty tissue. He took out most of it, but said that if he took it all, there would be an indent and he didn't want that. This worries me to be honest. The Lump must be directly on my muscle and it presses when I try to exercise my chest. It would actually shoot pain up through my neck and make that muscle pretty sore. But I guess I need to trust that this surgery fixed most of the problems.
He also decided to fix the ugly scar and take the sebaceous cyst on my chest. The thing is like a cat and has multiple lives. Every surgeon has said that they got it all out. Let's hope that he got it all this time.
I'm back to my back really hurting in the morning from the way that I must be sleeping. The pain from the surgery sites wakes me up at night and I have to take another pain pill. I'm trying to go without during the day and today is the first day back to working after surgery. I'm cutting it short at 4 hours. But I was supposed to have a full day tomorrow and Wednesday. I'm not sure that I'm up to that and hopefully my co-workers understand this.
I feel like I took 2 steps forward in recovery and could do lots of things and feel pretty good and now I'm back to limited motions, pain and soreness.
The large lump on my left chest area was dying fatty tissue. He took out most of it, but said that if he took it all, there would be an indent and he didn't want that. This worries me to be honest. The Lump must be directly on my muscle and it presses when I try to exercise my chest. It would actually shoot pain up through my neck and make that muscle pretty sore. But I guess I need to trust that this surgery fixed most of the problems.
He also decided to fix the ugly scar and take the sebaceous cyst on my chest. The thing is like a cat and has multiple lives. Every surgeon has said that they got it all out. Let's hope that he got it all this time.
I'm back to my back really hurting in the morning from the way that I must be sleeping. The pain from the surgery sites wakes me up at night and I have to take another pain pill. I'm trying to go without during the day and today is the first day back to working after surgery. I'm cutting it short at 4 hours. But I was supposed to have a full day tomorrow and Wednesday. I'm not sure that I'm up to that and hopefully my co-workers understand this.
I feel like I took 2 steps forward in recovery and could do lots of things and feel pretty good and now I'm back to limited motions, pain and soreness.
Thursday, September 19, 2013
I Am One of Many
I remember after my mom was diagnosed with breast cancer. Our family became involved in raising money for Susan Komen and American Cancer Society. We went on walks and meetings and held events. It was important to support my Mom in what she needed to do at that time.
I find myself taking a similar path. And it occurred to me that what I really want is to know that I am not alone. It'd not that I wish this on anyone, but for me life is about knowing that I'm not alone and making some connections. I need to know that someone walked the same path I did, before I did. That someone can tell me the way to go or give me hints on how to get to where I want to be. This is what I did when I had my abnormal biopsy and when I wanted to lose weight; I reached out.
With my surgery looming on Friday 9/20/13, I find myself desperate to connect with others who have walked my path. I've connected with FORCE and registered for what I could there. Yesterday I Googled "Previvor" and started clicking links. There are women out there who are Previvors, but I have yet to find a woman who isn't BRCA positive and still chose to have the mastectomy. I sometimes wonder if I am an anomaly? A one of a kind?
These are the blogs/sites that I found:
Previvor Generation: A woman who's had mastectomy and is in the process of reconstruction. She's honest. And I love that.
High Risk Humor: This woman was partially though her process and considering therapy. She last posted in March so I'm not sure what happened.
Previvor: This 23 year old woman documented her journey in video. I'm amazed at the willingness women have to share and this is no exception. I can't wait to watch her videos, probably after my surgery.
Three Sister Survival: These 3 sisters were all diagnosed with breast cancer within the same year! Talk about family history and risk of genetic cancer.
Brave Bosom: This woman talks about all of the various aspects of BRCA, testing, media, insurance... She is a wonderful writer and makes me think of things that I had not previously thought of.
Bright Pink: I've not heard of this before, why? They are an advocacy group for women who focus on the risk reduction and early detection of breast and ovarian cancer in young women while providing support for high-risk individuals. Me! I sent an email about an event they are having in Minneapolis on 9/25/13. I'm hoping that I feel well enough to attend. Incredibly, I received a response almost immediately that the national contact was forwarding my email to the local contact. I received a response that said if I'm not up to the event next week. to let her know when I am feeling better and she will meet me for coffee.
Still? I am searching for that one woman. That woman who isn't BRCA positive, didn't have cancer, but because of other risk factors chose to have the mastectomy. Surely I'm not the only one?
I find myself taking a similar path. And it occurred to me that what I really want is to know that I am not alone. It'd not that I wish this on anyone, but for me life is about knowing that I'm not alone and making some connections. I need to know that someone walked the same path I did, before I did. That someone can tell me the way to go or give me hints on how to get to where I want to be. This is what I did when I had my abnormal biopsy and when I wanted to lose weight; I reached out.
With my surgery looming on Friday 9/20/13, I find myself desperate to connect with others who have walked my path. I've connected with FORCE and registered for what I could there. Yesterday I Googled "Previvor" and started clicking links. There are women out there who are Previvors, but I have yet to find a woman who isn't BRCA positive and still chose to have the mastectomy. I sometimes wonder if I am an anomaly? A one of a kind?
These are the blogs/sites that I found:
Previvor Generation: A woman who's had mastectomy and is in the process of reconstruction. She's honest. And I love that.
High Risk Humor: This woman was partially though her process and considering therapy. She last posted in March so I'm not sure what happened.
Previvor: This 23 year old woman documented her journey in video. I'm amazed at the willingness women have to share and this is no exception. I can't wait to watch her videos, probably after my surgery.
Three Sister Survival: These 3 sisters were all diagnosed with breast cancer within the same year! Talk about family history and risk of genetic cancer.
Brave Bosom: This woman talks about all of the various aspects of BRCA, testing, media, insurance... She is a wonderful writer and makes me think of things that I had not previously thought of.
Bright Pink: I've not heard of this before, why? They are an advocacy group for women who focus on the risk reduction and early detection of breast and ovarian cancer in young women while providing support for high-risk individuals. Me! I sent an email about an event they are having in Minneapolis on 9/25/13. I'm hoping that I feel well enough to attend. Incredibly, I received a response almost immediately that the national contact was forwarding my email to the local contact. I received a response that said if I'm not up to the event next week. to let her know when I am feeling better and she will meet me for coffee.
Still? I am searching for that one woman. That woman who isn't BRCA positive, didn't have cancer, but because of other risk factors chose to have the mastectomy. Surely I'm not the only one?
Wednesday, September 11, 2013
Today Has No Plan
Today has no revolutionary plan to change my life completely by Friday.
I keep seeing on Pinterest this quote about if you're tired of starting over, don't quit anymore. Well damn, that's a kick in the pants.
This is the thing, I don't think I quit. I think that Iwas on am on this healthiness journey in life. This marathon to the end. And along the way, I needed to detour to do something else for my health. Right? I mean, who the hell cares if I'm skinny Michelle with rock hard abs and hips like a 13 year old if I have breast cancer and my body is ravaged by the side effects of chemo?
Keep trying.
I met with Dr July. My very loved bariatric surgeon. She is one of two doctors that I'd follow to the ends of the Earth for care if they left this area. She's brutally honest and wants me to be honest too. She's caring, but will tell me to kick it in gear when I need it. She also doesn't have unreasonable expectations of me.
She noted that I gained 15 pounds since prior to surgery and about 5 pounds in the last month. Clearly, my band is not where it needs to be to keep me from stuffing my face. Clearly, I need this band to be set for me to help me eat in a way that is healthy. It's convicned me that I really do need this band. We talked for a while about how I've been doing and what's been stopping me from being healthy. Really talked.
One of my issues is that I don't know how to work my abs and chest so that I'm not hurting them, but rebuilding muscle. I can't walk/run because my abs are so weak and really a bit injured still from surgery. So I'm on this cycle. She referred me to a few sessions with a sports physical therapist to help me learn how to do that without hurting myself.
She referred me back to eating 3 planned meals and 2 planned snacks a day. To try this for a couple of weeks and if I can't sustain this, I need to make an appointment with the nutristionist for some check ups on my eating habits and patterns.
She referred me to their exercise specialist at the center. I can meet with her as often as needed for help with appropriate exercises for healing and getting back to loving that daily workout.
And I committed to myself to be mindful of my eating again. To ask myself why I'm eating before I put something in my mouth. And to check myself for a healthier option to what I was/am about to put in my mouth. Mindful eating.
So I have a plan. But unlike the other plans, this is today. I'll worry about tomorrow when it arrives.
I keep seeing on Pinterest this quote about if you're tired of starting over, don't quit anymore. Well damn, that's a kick in the pants.
This is the thing, I don't think I quit. I think that I
Keep trying.
I met with Dr July. My very loved bariatric surgeon. She is one of two doctors that I'd follow to the ends of the Earth for care if they left this area. She's brutally honest and wants me to be honest too. She's caring, but will tell me to kick it in gear when I need it. She also doesn't have unreasonable expectations of me.
She noted that I gained 15 pounds since prior to surgery and about 5 pounds in the last month. Clearly, my band is not where it needs to be to keep me from stuffing my face. Clearly, I need this band to be set for me to help me eat in a way that is healthy. It's convicned me that I really do need this band. We talked for a while about how I've been doing and what's been stopping me from being healthy. Really talked.
One of my issues is that I don't know how to work my abs and chest so that I'm not hurting them, but rebuilding muscle. I can't walk/run because my abs are so weak and really a bit injured still from surgery. So I'm on this cycle. She referred me to a few sessions with a sports physical therapist to help me learn how to do that without hurting myself.
She referred me back to eating 3 planned meals and 2 planned snacks a day. To try this for a couple of weeks and if I can't sustain this, I need to make an appointment with the nutristionist for some check ups on my eating habits and patterns.
She referred me to their exercise specialist at the center. I can meet with her as often as needed for help with appropriate exercises for healing and getting back to loving that daily workout.
And I committed to myself to be mindful of my eating again. To ask myself why I'm eating before I put something in my mouth. And to check myself for a healthier option to what I was/am about to put in my mouth. Mindful eating.
So I have a plan. But unlike the other plans, this is today. I'll worry about tomorrow when it arrives.
Monday, September 09, 2013
The Emotional Toll
I thought I had it all worked out. I spent hours with Pete talking 5 years ago when my Mom was tested for BRCA. We talked about how having a mastectomy would change myself, and in turn change our lives. I had it figured out after spending so much time talking. It would change me, but I could get through it. And I had it all figured out.
When my mammo was abnormal and my path changed and I thought I had it all figured out. I had spent all that time talking and thinking and figuring it all out. But the reality is that I didn't. I have this self doubt that is creeping in. I have a lack of confidence that is disheartening. I can't help but wonder if I did the right thing.
I spent so much time prior to surgery getting physically and mentally ready for surgery. When I let myself think too much, I was an emotional mess and spent the day or days in bed crying. I tried to focus on the positive and often put a smile on for those around me. I planned and wrote lists and made calls, all things to keep me busy.
I spent the days after surgery trying to physically recover. This was a hard surgery. Even now, 60 days later, I hurt and have muscle soreness and pain. And I remember remarking to someone, about 30 days out, how surprised that I wasn't more of an emotional basket case. I kept waiting for the emotions to bubble up and flow out.
The last couple of weeks, as I try to resume my life from before April, I noticed that I was more emotional about random small things. While I can potentially attribute some of this to my cycle (I'm still learning my body's new/other cues), I can't blame it all on that. I've had some long crying jags and intense discussions with Pete, along with car rides where I don't remember getting from point A to B. The emotional part has kicked in. Hard.
I think I'm in the middle of grieving my old life. I've done this before. My failed and destructive TMJ surgeries led me to grieve the life that I would have had without the daily pain. I was well out of grief when I could look back and see that's what had happened. I had no idea what was happening while in it and likely held most of it in, leaving no one to point out to me what was going on while I was in it. This time I have an inkling of what's going on. But as with any grieving process, it's different for each person and each time. The difference is that I can't go this alone and I shouldn't go it alone.
It's a struggle. I spent so much of my life relying on me. Living in my head, figuring out things myself and living my own problems out. But I can't expect to not let Pete in. I can't expect him to support me, without knowing what I'm thinking and what I need from him. I need to let him in.
I've come to realize today, that I think I'm second guessing myself. Second guessing if I should have had the surgery. I'm caught in this no mans land of being a previvor, not having cancer, but having a pretty big probability of having it at some point. I'm struggling with body image, self confidence and figuring out how my life looks today and forward. What if it was all for nothing? What if I took the wrong path?
When my mammo was abnormal and my path changed and I thought I had it all figured out. I had spent all that time talking and thinking and figuring it all out. But the reality is that I didn't. I have this self doubt that is creeping in. I have a lack of confidence that is disheartening. I can't help but wonder if I did the right thing.
I spent so much time prior to surgery getting physically and mentally ready for surgery. When I let myself think too much, I was an emotional mess and spent the day or days in bed crying. I tried to focus on the positive and often put a smile on for those around me. I planned and wrote lists and made calls, all things to keep me busy.
I spent the days after surgery trying to physically recover. This was a hard surgery. Even now, 60 days later, I hurt and have muscle soreness and pain. And I remember remarking to someone, about 30 days out, how surprised that I wasn't more of an emotional basket case. I kept waiting for the emotions to bubble up and flow out.
The last couple of weeks, as I try to resume my life from before April, I noticed that I was more emotional about random small things. While I can potentially attribute some of this to my cycle (I'm still learning my body's new/other cues), I can't blame it all on that. I've had some long crying jags and intense discussions with Pete, along with car rides where I don't remember getting from point A to B. The emotional part has kicked in. Hard.
I think I'm in the middle of grieving my old life. I've done this before. My failed and destructive TMJ surgeries led me to grieve the life that I would have had without the daily pain. I was well out of grief when I could look back and see that's what had happened. I had no idea what was happening while in it and likely held most of it in, leaving no one to point out to me what was going on while I was in it. This time I have an inkling of what's going on. But as with any grieving process, it's different for each person and each time. The difference is that I can't go this alone and I shouldn't go it alone.
It's a struggle. I spent so much of my life relying on me. Living in my head, figuring out things myself and living my own problems out. But I can't expect to not let Pete in. I can't expect him to support me, without knowing what I'm thinking and what I need from him. I need to let him in.
I've come to realize today, that I think I'm second guessing myself. Second guessing if I should have had the surgery. I'm caught in this no mans land of being a previvor, not having cancer, but having a pretty big probability of having it at some point. I'm struggling with body image, self confidence and figuring out how my life looks today and forward. What if it was all for nothing? What if I took the wrong path?
Thursday, August 15, 2013
198; Motivation & Support From Strangers
When I was called for additional mammogram images in April (post here), my life changed forever. Scratch that, my life seemed to stop. Everything went along in slow motion, as though the film reel of my life was stuck somewhere. I made the decision to blog about it, mostly so I could get these swirling, overwhelming feelings and thoughts out of my head and into the world; to lighten my load by sharing it.
I posted some questions on some of the message boards that I belong to, on my blog and in real life. I read online articles, other women's blogs and books on the subject. I kept a big notebook with information about what I learned, lists of questions for doctors, and lists for myself.
But along the way I was given beautiful people. Women who contacted me after reading my message board posts or blog entries and offered support. It was beautiful. It lifted me up when I needed it. It allowed me to ask the delicate questions that no one else could answer. It let me vent when I needed it.
One of the women is:
She sent me a comment that was so supportive and understanding and ENCOURAGING. It brought me to tears and made such an impact in the days leading up to my surgery.
5 weeks post bilateral mastectomy and reconstruction, I still struggle with how to describe what I've been going through. I've had people ask me in stores if I was ok because of the slow walking and difficultly in lifting. I tell them that I had a mastectomy and they tell me they're sorry about my cancer. Only I didn't have cancer; the pathology was negative. I tried explaining once and then I started just nodding and now I just tell people that I had breast cancer surgery. It's confusing at times for me, so I can only imagine how confusing it is for others.
So today, I am sending you to Gayle's series on Life As a Previvor. She explains how she left, the steps she took and her outcome in a several part series. It's not all posted yet, but I encourage anyone who doesn't understand the thought process, the choices to be made and what life is like afterwards to please read this. She does a great job explaining it all.
I posted some questions on some of the message boards that I belong to, on my blog and in real life. I read online articles, other women's blogs and books on the subject. I kept a big notebook with information about what I learned, lists of questions for doctors, and lists for myself.
But along the way I was given beautiful people. Women who contacted me after reading my message board posts or blog entries and offered support. It was beautiful. It lifted me up when I needed it. It allowed me to ask the delicate questions that no one else could answer. It let me vent when I needed it.
One of the women is:
She sent me a comment that was so supportive and understanding and ENCOURAGING. It brought me to tears and made such an impact in the days leading up to my surgery.
5 weeks post bilateral mastectomy and reconstruction, I still struggle with how to describe what I've been going through. I've had people ask me in stores if I was ok because of the slow walking and difficultly in lifting. I tell them that I had a mastectomy and they tell me they're sorry about my cancer. Only I didn't have cancer; the pathology was negative. I tried explaining once and then I started just nodding and now I just tell people that I had breast cancer surgery. It's confusing at times for me, so I can only imagine how confusing it is for others.
So today, I am sending you to Gayle's series on Life As a Previvor. She explains how she left, the steps she took and her outcome in a several part series. It's not all posted yet, but I encourage anyone who doesn't understand the thought process, the choices to be made and what life is like afterwards to please read this. She does a great job explaining it all.
Monday, August 12, 2013
195.8: Balancing Back to Normal
Last Wednesday (8/7) was 4 weeks since surgery. Last Monday (8/5), my supervisor called asking when I thought I'd be back. I had to take a pause. My doctor's note indicates 6-8 weeks with an additional 2 weeks of part time before I transition back to full time.
I told him that I honestly didn't know. There are hours where I think, hey I could do that computer stuff and work. And there are several days like this previous weekend, when I'm not sleeping and in pain and trying to sleep every few hours. I have no idea where I'll be in 4 weeks. I may need some additional time or additional part time to be able to return.
On Friday Pete and I went to my Grandma's house, a place of comfort and caring, so he could help her with a new computer. In the 4 hours that we were there, I fell asleep twice for about 30 minutes each. When we got home at 3pm, I fell asleep almost instantly and slept hard for 3 hours. Clearly, I'm currently in no shape for lengthy trips out of the house.
The fallout of course, is that my need for sleep to recover is really screwing with my insomnia that I normally suffer with. So I slept on Friday afternoon because my body obviously needed it. In return I slept 11 hours over the weekend with no naps. My insomnia flared and I ended up having to take Ambien last night to get a full night's sleep.
So I need to rethink this plan of mine for recovery. I need to start shooting for balancing my recovery needs with my usual needs and strive for "normal" again. I'm finding it's not so easy.
I told him that I honestly didn't know. There are hours where I think, hey I could do that computer stuff and work. And there are several days like this previous weekend, when I'm not sleeping and in pain and trying to sleep every few hours. I have no idea where I'll be in 4 weeks. I may need some additional time or additional part time to be able to return.
On Friday Pete and I went to my Grandma's house, a place of comfort and caring, so he could help her with a new computer. In the 4 hours that we were there, I fell asleep twice for about 30 minutes each. When we got home at 3pm, I fell asleep almost instantly and slept hard for 3 hours. Clearly, I'm currently in no shape for lengthy trips out of the house.
The fallout of course, is that my need for sleep to recover is really screwing with my insomnia that I normally suffer with. So I slept on Friday afternoon because my body obviously needed it. In return I slept 11 hours over the weekend with no naps. My insomnia flared and I ended up having to take Ambien last night to get a full night's sleep.
So I need to rethink this plan of mine for recovery. I need to start shooting for balancing my recovery needs with my usual needs and strive for "normal" again. I'm finding it's not so easy.
Tuesday, July 23, 2013
I Feel Defeated
I sit in my recliner every day. It's as though it's my compact little home. I eat while sitting in it, sleep while sitting in it, watch TV in it, read in it, crochet in it...everything.
At almost 2 weeks out, I can be home by myself. I get up and wash up in the sink as best I can. Every third day I wash my hair in the sink as best I can and let it dry or if I have enough strength, I dry it a bit with the blow dryer. Just doing that, exhausts me. I have to go back to my chair and rest for a while.
I've had lunch guests almost every day I've been home, either Pete or family/friends. Sunday we had a friend over with her 3 dogs for about an hour. Then I had a friend from a message board I belong to over for an hour or so. I was wiped out. The activity, even if I'm only sitting in my chair, tires me out.
When I'm by myself I read on my Nook, watch some TV (but this is already getting old), crochet a line or two, play a game on my phone/social network or read blogs/message boards on my netbook. I take the dog out every couple of hours by putting him on his line and I sit in a chair on the patio. The sun feels good on my face and the weather's been good.
I tried early on to get into bed to sleep and couldn't do it. I couldn't lean back, even with a bunch of pillows and Pete and I struggled to get me out. Last Friday, I could get in bed myself and I took a couple hour restless nap there. So last night I decided I was strong enough to get in bed and I was going to slept the night there with Pete. It's so disjointed to me to kiss him good night and we go to separate rooms. I just want to cuddle with him again. Watch TV with him holding my hand (even the chair makes this hard).
I got in and adjusted the Sleep Number bed and relaxed. And it felt wonderful. For about 3 hours. Then I felt like I just couldn't support myself or I was sliding down and the pressure on my abdomen and my chest was uncomfortable. Actually it started about 2 hours in and I kept readjusting myself to see if I could figure out the combination. But it just wasn't going to work.
I feel so defeated. This is the point in recovery where I feel ok and I think I could be back to "normal" and the fact that I'm not makes me feel just miserable. I cried as I got out of bed and came back down to my chair. Pete comforted me, but in the end, he again had to kiss me goodnight and head to our separate rooms.
At almost 2 weeks out, I can be home by myself. I get up and wash up in the sink as best I can. Every third day I wash my hair in the sink as best I can and let it dry or if I have enough strength, I dry it a bit with the blow dryer. Just doing that, exhausts me. I have to go back to my chair and rest for a while.
I've had lunch guests almost every day I've been home, either Pete or family/friends. Sunday we had a friend over with her 3 dogs for about an hour. Then I had a friend from a message board I belong to over for an hour or so. I was wiped out. The activity, even if I'm only sitting in my chair, tires me out.
When I'm by myself I read on my Nook, watch some TV (but this is already getting old), crochet a line or two, play a game on my phone/social network or read blogs/message boards on my netbook. I take the dog out every couple of hours by putting him on his line and I sit in a chair on the patio. The sun feels good on my face and the weather's been good.
I tried early on to get into bed to sleep and couldn't do it. I couldn't lean back, even with a bunch of pillows and Pete and I struggled to get me out. Last Friday, I could get in bed myself and I took a couple hour restless nap there. So last night I decided I was strong enough to get in bed and I was going to slept the night there with Pete. It's so disjointed to me to kiss him good night and we go to separate rooms. I just want to cuddle with him again. Watch TV with him holding my hand (even the chair makes this hard).
I got in and adjusted the Sleep Number bed and relaxed. And it felt wonderful. For about 3 hours. Then I felt like I just couldn't support myself or I was sliding down and the pressure on my abdomen and my chest was uncomfortable. Actually it started about 2 hours in and I kept readjusting myself to see if I could figure out the combination. But it just wasn't going to work.
I feel so defeated. This is the point in recovery where I feel ok and I think I could be back to "normal" and the fact that I'm not makes me feel just miserable. I cried as I got out of bed and came back down to my chair. Pete comforted me, but in the end, he again had to kiss me goodnight and head to our separate rooms.
Wednesday, June 26, 2013
Changing Habits
Tuesday was a shitty day. No other way to put it. I was having anxiety attacks at work about surgery and all that goes into it. I was down to 2 weeks prior to surgery and feeling it physically.
I had a coworker come into my office after our weekly meeting and tell me that next week would be my last weekly meeting. How ironic, since that's exactly what I was feeling and exactly what I explained in Tuesday's post. So I told her that I was having anxiety over "lasts".
Her response: All we ever do here anymore is talk about you and your surgery.
I was immediately ashamed. Ashamed that I was dominating conversation. Ashamed that I would have made anyone feel uncomfortable by over sharing. I already felt guilty for leaving my coworkers down a person for so long. I feel guilty being a burden to anyone. I was shocked and clammed up and changed the conversation.
But it sat there, that sentence. It sat in my brain and marinated all day. I wondered if I had been so very imposing? Or was there more to the comment? Was it just thoughtless? At about 4:15 pm, I couldn't stand it any longer and I emailed some of my coworkers, the ones that I see daily. If she thought this and was only here about 1 day every 6 days, then they must feel it more so.
Then I told Pete about it by text and told him that I needed a ride. So we did. 180 miles, sun on my shoulders, wind in my face, open road before me and arms wrapped around Pete...we rode.
On the way home I realized that this was a turning point. In the past, had this same thing happened, I would have gone home, buried my head in my covers and ate my way through reality TV all night. Instead I turned to something non food related to soothe my soul. It didn't even occur to me to eat that night, in fact I wasn't hungry at all. Maybe my habits really are changing?
I had a coworker come into my office after our weekly meeting and tell me that next week would be my last weekly meeting. How ironic, since that's exactly what I was feeling and exactly what I explained in Tuesday's post. So I told her that I was having anxiety over "lasts".
Her response: All we ever do here anymore is talk about you and your surgery.
I was immediately ashamed. Ashamed that I was dominating conversation. Ashamed that I would have made anyone feel uncomfortable by over sharing. I already felt guilty for leaving my coworkers down a person for so long. I feel guilty being a burden to anyone. I was shocked and clammed up and changed the conversation.
But it sat there, that sentence. It sat in my brain and marinated all day. I wondered if I had been so very imposing? Or was there more to the comment? Was it just thoughtless? At about 4:15 pm, I couldn't stand it any longer and I emailed some of my coworkers, the ones that I see daily. If she thought this and was only here about 1 day every 6 days, then they must feel it more so.
Then I told Pete about it by text and told him that I needed a ride. So we did. 180 miles, sun on my shoulders, wind in my face, open road before me and arms wrapped around Pete...we rode.
Thursday, May 30, 2013
190; What 'Cha Reading? What 'Cha Watching? What 'Cha listening to?
I'm a total list maker. Pete laughs at me because I make a list a couple of weeks in advance of going on vacation. Everything from clothes to electronics to snacks to jewelry. And on more occasion than one it's saved me from having to buy lots of crap when I get to where I'm going.
So I'm putting my list making into overdrive. No matter that I don't have a surgery date yet. I have lists of things to get accomplished before surgery, lists of things I need to buy, lists of food to make before and have on hand when I come home, lists of modifications I need to make to the house for afterwards. And I think I even have a list of my lists.
Really.
I'm scheduled to be in the hospital for about 4 days if everything goes ok. I'm guessing that I'm be mainly snoozing and watching some mindless TV. But I'd like to bring my iphone and long charging cord so that I listen to music. Pete has wonderful soothing music that he listens to and I'm hoping that it will drown out some of the hospital noise and help me relax. What do you listen to when you're wanting to relax?
Once home, I'm told that I'm going to be sleeping and randomly up for the first 1-2 weeks. So during this time I'd love to get some suggestions for reading and movie/TV watching. I have about 6-7 books on my Nook that I'm interested in, but would love suggestions for more. I love mystery/hard to figure out suspense thrillers. I like true stories that are pulled from headlines and explain situations/times in more depth. I have to say though, romance and chicklit just doesn't do it for me anymore. I think I read way too many of those books and I can't get into them any longer. Any good magazines I should check out?
Admittedly I am a total reality show junkie. But when I look at the TiVO, I realize that we don't watch a whole lot of series/TV. Sons of Anarchy, reruns of Law & Order SVO or Criminal Intent, some random cooking shows and that's it. I watch some of the Real Housewives series but not all. I got into the FX show The Americans this fall. But sitcoms really haven't been our thing. I did catch a few Mindy Project and The New Girl episodes that were funny. Any suggestions for series to watch that I can catch from Netflix or Amazon?
Movies seem to be feast of famine for Pete and I. We go through streaks of seeking movies every weekend and then for a long time we see nothing. My last 3 movies are The Hobbit, StarTrek and I have no idea because it's been so long. So any suggestions for movies from the last 6-9 months that I could get from Redbox or Netflix/Amazon?
After 2 weeks I'm gonig to start crocheting. It's going to help with moving my arms/hands without biog exaggerated movements. Anyone need a baby blanket? LOL
So I'm putting my list making into overdrive. No matter that I don't have a surgery date yet. I have lists of things to get accomplished before surgery, lists of things I need to buy, lists of food to make before and have on hand when I come home, lists of modifications I need to make to the house for afterwards. And I think I even have a list of my lists.
Really.
I'm scheduled to be in the hospital for about 4 days if everything goes ok. I'm guessing that I'm be mainly snoozing and watching some mindless TV. But I'd like to bring my iphone and long charging cord so that I listen to music. Pete has wonderful soothing music that he listens to and I'm hoping that it will drown out some of the hospital noise and help me relax. What do you listen to when you're wanting to relax?
Once home, I'm told that I'm going to be sleeping and randomly up for the first 1-2 weeks. So during this time I'd love to get some suggestions for reading and movie/TV watching. I have about 6-7 books on my Nook that I'm interested in, but would love suggestions for more. I love mystery/hard to figure out suspense thrillers. I like true stories that are pulled from headlines and explain situations/times in more depth. I have to say though, romance and chicklit just doesn't do it for me anymore. I think I read way too many of those books and I can't get into them any longer. Any good magazines I should check out?
Admittedly I am a total reality show junkie. But when I look at the TiVO, I realize that we don't watch a whole lot of series/TV. Sons of Anarchy, reruns of Law & Order SVO or Criminal Intent, some random cooking shows and that's it. I watch some of the Real Housewives series but not all. I got into the FX show The Americans this fall. But sitcoms really haven't been our thing. I did catch a few Mindy Project and The New Girl episodes that were funny. Any suggestions for series to watch that I can catch from Netflix or Amazon?
Movies seem to be feast of famine for Pete and I. We go through streaks of seeking movies every weekend and then for a long time we see nothing. My last 3 movies are The Hobbit, StarTrek and I have no idea because it's been so long. So any suggestions for movies from the last 6-9 months that I could get from Redbox or Netflix/Amazon?
After 2 weeks I'm gonig to start crocheting. It's going to help with moving my arms/hands without biog exaggerated movements. Anyone need a baby blanket? LOL
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