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So I realize how long it’s been since I’ve posted here. Many things, so many things, have changed. There have been tough times and incredibly wonderful times. Now I’m settling in.

This won’t be long…just a short run down since, um, 3 years ago. I think I last wrote when I was still having complications with my surgery. I have since had a couple of additional surgeries. The bottom line is my abdominal muscle will always be “detached” and weaker. However, I have never been more strong. My breasts actually look better than the real ones ever did and I feel better than I ever have…even in my younger years. I’ve said it before, I’m scarred but who isn’t? I no longer differentiate between those scars or any others on my body, with the exception of one. The damn scar on my shin from a missed box jump is worse than any other one on my body. I am, admittedly, self conscious about that one.

Let’s see…I was also married when I last wrote. That changed on Christmas Day 2011 when my ex walked out. I did the typical tailspin for a while and now realize that was the best, and I mean absolute best, thing he ever did for me. I have grown as an independent woman and have learned to accept myself for who I am, which happens to be a damn strong, intelligent, loving, beautiful human being. I love me and I love my family.

Another update…my son and I moved to Frisco, Texas. I left behind a few very, very dear friends who I really don’t want to be away from. There’s also the network of friends who you know are always going to be around somewhere at any given time. Moving is scary and, holy crap, is it stressful. But things are falling into place. The house actually feels more like a home now that things are unpacked and finding the way into the proper places. My son is playing hockey and the best part is that I’m 20 minutes from my aunt and 20 minutes from my cousin. I get to see them all the time now and I love it.

Oh yeah, all the reconstructions? That’s all done. The fat grafting, implants, more fat grafting…no more. Not because I can’t handle it anymore, I simply don’t need it. Now my scars are faded, and did I mention that my breasts look better than they ever did before? I think so, but it bears repeating 😉 I’m fit and started training for triathlons. I simply feel great about myself. Now, I’m normal, so it’s not all rainbows and butterflies, but it’s really pretty damn good.

Looking back, I wrote about a really jacked up experience. What I went through, and chose to write about, was definitely raw. I was in the emotional and physical trenches. It feels weird to read some of what I’ve written. Some is embarrassing and I have felt tempted to remove it or close the blog. But then I think of the other women who are facing the choice I had to face and I feel like this might be helpful in some way. So I’m swallowing the pride and leaving it all out there.

In the end, full circle doesn’t really describe my journey. I haven’t stopped where I began. I’m in a completely different place; someplace so much more positive and peaceful than the starting point. I’m grateful for the important people in my life who have helped me get here because it didn’t happen all by itself. But it happened.

 

halloween wonder woman

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Thinking back, I find it hard to believe it’s been almost 2 years since my last surgery. Really. I was going over it in my head. How did the time go so quickly? So many things have changed in the last few years, aside from the obvious tragic losses. I moved to New England and got to meet wonderful people. I got to visit Boston frequently and learned to love certain things about that city. I thoroughly enjoyed taking my aunt through Boston and showing her the sights. My husband and I learned valuable life lessons in that move, things that make us stronger as a couple, better parents and things that made us grow in our professions. That being said, we realized it wasn’t the best place for us and came back home…to Michigan…another thing I can’t believe. Michigan has become my home.

Coming home was like taking a deep breath. I had already started trying to lose weight and had lost about 30 pounds. After moving home I continued losing weight and started working out really hard. I have gained so much strength. A year ago, if I were sitting on the floor, I would have to have help getting up. There was no way I could do one pushup….on my knees. Now I’m doing turkish getups (youtube it) with kettlebells. I’m doing planks WITH added challenges. I can see my muscles. I can feel my muscles. I have lost 50 pounds. I’m setting goals for myself again, goals I thought would be impossible forever. Oh, if you could see the smile on my face. Speaking of smiles, here’s something else that makes me smile….my new tattoo. The pink ribbon represents breast cancer and the teal represents ovarian cancer. Because I feel freed from cancer by learning about my mutation and taking the steps I felt were right for me, I wanted the breaking chain in the tattoo, with the word Previvor. I think that says it all.

                                    

Here’s the thing. My abdomen is still not healed. Something is wrong. I have that unsightly bulge above my incision on the left, which is really not the biggest deal. The problem is that my abdominal muscles on the left may be atrophied and have lost nerve connection. The weakness leads to an imbalance when I workout and, while I have gained strength, I am still hindered by this issue. So we are going back to surgery. My surgeon is going to take a look at my abdomen and see if it can be fixed. I’ve said if it looks like the chances are very high for a good outcome, go for it. On the other hand, if it looks like nothing can be done or the chances for a good outcome are slim, just leave it as is. I will have to figure out a way to strengthen the muscles around the defect. As far as the bulge goes, I think that’s a bit of the mesh from my last surgery that may be bunched up. You can almost feel it if you push on it. Yeah, I know, yuk. Then there’s the boob issue. The whole boob aesthetics isn’t huge with me. I’m not beyond wanting to look good, but I don’t need perfect boobs. However, when you’ve had your boobs completely removed and rebuilt out of belly fat, wanting them to look normal is sort of…..normal. There was always a little divot in the cleavage area on both sides. Now the boobs have sort of settled and I’ve lost weight so it’s much more pronounced. You can see my ribs  instead of cleavage. Yeah, yuk #2. Sorry folks. This blog is about the ugly, and beautiful, truth of my personal BRCA fallout.

So the plan is to, first, look at my abdomen and hope for an easy fix. Second, liposuction to harvest fat. People, let me tell you, this is a completely mixed bag. Lipo sounds great, but that shit hurts. Yes, it’s coming from areas that are more than willing to donate, but this is going to be the most painful part. See, there’s not much sensation in my breasts or in the superficial area of my abdomen so I don’t anticipate a lot of discomfort there…..hopefully. Then the harvested fat will be injected into the emptier areas of my breasts. We’ve decided to forgo an implant and use my own fat to make the breasts as full as possible. My surgeon says I don’t have much fat to give. Picture me doing a cross between (or both at the same time) a maniacal, sarcastic laugh and Katherine Heigl’s dumb little happy dance in the Ugly Truth. Yeah, yuk #3.

Today I donated the first of two units of blood to have on reserve for surgery. If you’ve read back in my blog, you know I don’t bounce back from surgery very well. During the first, the surgeon in Texas couldn’t get my bleeding to stop and I had to have a transfusion afterward. I had less bleeding in the second surgery, but still needed a transfusion afterward. And the third surgery may have been the worst. Even though I was given fresh frozen plasma during surgery to prevent a need for transfusion later, I still had a syncopal episode (passed out) in the bathroom…thank goodness the nurses were there to catch me before I hit the floor. I went home, spiked a fever the next day and ended up admitted to the hospital for about a week with, you guessed it, another transfusion. Now I’m banking my own blood, just in case. I have to give another unit next week. I’m NOT thrilled about doing that. They used a freakin’ 16 gauge needle! Totally unnecessary. My blood was flowing. They could get the full unit from me in less than 10 minutes with a 20 gauge…okay maybe an 18. The next couple of weeks are going to be tough. I just want to get this over with. At least I have a visit with my aunt and cousin in Texas in a week. That’s going to be so awesome, and it’ll help keep my mind off the surgery.

This is my journey and it’s not over. I have a lot of living to do and, thanks to learning about my genetic mutation, I’m going to live it without the fear of getting breast or ovarian cancer. I’m headed into the 4th surgery, but I’m headed in stronger than I have been in years. Those goals that I thought would be impossible forever? They may not ALL happen, but they’re all goals instead of just wishes. My family and I are back home and surrounded by people, even some from a distance, who make our lives better every day, people who motivate me, love me, encourage me and support me. I’m in a good place in my mind and in my soul…and in Michigan.

Yes!!! Tomorrow is the day designated as National Previvor Day. Thanks to the efforts of all those who support women and men with hereditary breast and ovarian cancer (HBOC) risks and groups like FORCE and Be Bright Pink, among many others, we have a day which celebrates our life and struggles to preserve it. We’re called previvors because we’re not survivors of cancer, but have preempted the threat by increasing awareness or taking drastic measures to prevent it. We’re called previvors because we are living in spite of the threat.

Living….to me that means I am surviving.  While I know some people are very opposed to the term “previvor” for varied reasons and I know they would be even more livid if we called ourselves survivors, I feel like a survivor. I have survived the pain and loss that cancer has inflicted on my family. Both of my parents fought valiantly and gracefully in the face of a terrifying parasite that ate their bodies and their lifestyles. Their souls stayed strong and that’s what gives me strength today. I survived the paralyzing knowledge that I carry a mutation to the tumor supressing gene that put me at a horrifying risk of getting breast or ovarian cancer. Yes, my ovaries were gone by the time I learned of my mutation, but that relief was barely felt when I thought of my breast cancer risk. I am surviving the tortuous thought that my child may have had the gene passed on to him. I say surviving because my daughter has been spared, thank God, and now I worry about my son. I have survived the incredibly dark 2-3 years of my life, during which time I lost my mother, learned of my mutation and subsequently fell completely out of touch with myself. I lost friends. I lost the security I had in my work. I had a job I loved and was damn good at it. I was friends with my managers and was respected. That all changed because I couldn’t handle the pain of losing my mother, making the decision to remove my breasts and fighting with the insurance company. I became dark, impatient, scared, and angry. I had 3 surgeries in one year and I’m still recovering. I lost my self esteem when my body was so drastically changed. It didn’t (doesn’t) feel like me….hell I’m numb in my breasts and across my abdomen. Yep, it was my choice. The alternative was cancer. No brainer, really.

But, here’s the thing, I know where I am now. I’m awake. I’m fighting for my self esteem, fighting for security in the decisions I made, but I’m also fighting for what everyone else is fighting for. I’m fighting for my kids to grow up happy and successful, to watch them enjoy life, to play with grandkids and grow old with my husband. I am a survivor…a survivor of life. There’s more to come, more to survive….but, that’s the plan. Survive.

Happy National Previvor Day everyone. Celebrate the ones you love and the life you have. All my friends and family, I remember you and love you.

Fight Cancer Together

A new aquaintance, David Haas, has asked me to post his short article (click the link above) about utilizing support systems to fight cancer. I think this also applies to those of us who have battled with the decisions, and aftermath of the decisions, surrounding a BRCA mutation.

I have been absent from my blog for some time and have been meaning to get back to writing. This request has prompted me to continue. While some of you may not care to read my thoughts, it’s therapeutic for me and I’ve been away too long.

As we approach another National Previvor Day, I have to look back on the journey I started 2 years ago. It’s been one hell of a roller coaster of emotions and serious fallout. I recieved the knowlege of my mutation after my mother’s death and made the decision to remove my breasts. I had no emotional reserves or coping strength in the tank after my mother’s death and I certainly failed at getting through this with any grace whatsoever. I lost friends, treated people badly, had to migrate away from my ER nursing career and barely kept my head above water. That’s not even delving into my absence as a mother and a wife. I had complications to my surgery that left me feeling hopeless and lost. Maybe PTSD is what I was going through. If I had to diagnose myself with anything that would be it. You can read back, if you like, and see how truly derailed I was for a while. I now have a very centered, grounded appreciation of what I’ve gone through. I am taking better care of myself (I gained over 50 pounds after my mother’s death and my surgeries). I’ve lost almost all the weight I gained, work out regularly and eat a very healthy diet. Though I still have a bulge on the left side of my abdomen, above my incision, and there is a section of my rectus muscle on the left side that is now denervated, I am accepting of my physical condition and appearance. I’m focused on being the strongest and healthiest I can be. A little section of atrophied abdominal muscle isn’t gonna stop me. Here’s me now…please ignore the cheesy background, particularly the tag laying on the floor….hey, at least it’s from a workout garment, hee hee.

Knowing there is support out there, and recieving it from a true sisterhood of women in similar circumstances helped me tremendously. I found support with FORCE at www.facingourrisk.org and Be Bright Pink at www.bebrightpink.com. I encourage people to look at my blogroll to find even more resources that are available for support. I want to shout out to all the people who have given me support over the last 2 years. Family, friends on facebook, co-workers, all of you from the smallest smile in greeting, compliment, or genuine in-depth conversation about my story have truly gotten me through a very dark time in my life. I thank all of you from the bottom of my healed heart.

So here’s to National Ovarian Cancer Awareness month and the upcoming National Previvor Day. I’m still going along as best I can. I’m a previvor and I’m proud of it.

I’ve been meaning to get back to writing….and meaning…..and meaning….all the way until my head hits the pillow and I start all over again the next day. So much is happening and I just want to slow down for a minute. I want to hold my family close to me and let time speed on by…just for a selfish moment.

I knew letting my kids grow up was going to be hard-like I knew that birthing them would be hard. You just don’t know how hard until you’re in the moment. Childbirth was an agonizing, “I don’t think I’m going to live through this”, pain with a glorious purpose and a breathtaking reward. Watching my first-born graduate and come into her own in so many ways is sort of similar, but a little more painful-heartbreakingly painful. There’s, seriously, an enormous lump in my throat and in my chest when I think of it. It’s actually more like a vacuum that just sucks my air away for a moment. Then I have to blink so hard to stay the tears and pull up those hateful bootstraps. So many things play through my mind from the time she was a baby. She used to laugh so hard it would make her spit up. I warned people to stop making her laugh or she would nail them. She had no hair as a baby, then had a golden halo of curls, now has a cascading mane of honey blonde waves. She used to want to follow me, be with me, run to me when she saw me. She grew to hang out with me, share her day, talk about things she learned, smiled when she saw me, hugged me so tightly just when I needed it. Now, she’s ready to embark on her own life, ready to loosen my grip. She still hugs me tightly, but I’m trying to get used to the fact that when I really need an Ali hug I’ll have to wait until the next time I see  her. My beautiful angel. I’m so very proud of her. As pretty and funny as she is, her mind is what really blows me away. She’s going to do well, that one. While this time in my life is excruciating, it’s also exhilarating. My daughter is going to college, she’s starting to live her dream and become a woman. She believed me when I told her, truthfully and with loving confidence, she could be anything she wants to be.

This is a new beginning in several ways. Ali has her new beginning, free from the cursed genetic mutation that I have. She doesn’t have to worry any more than the average woman does. Her risk of breast and ovarian cancer is that of the general population. She is free to start her journey without thinking about the ticking time bomb, being pressured to hurry up and have children so she can have the surgeries that would save her life. She can concentrate on political science or anthropology, plan on the Peace Corps and law school. She can fall in love, or not. She is free. Thank God.

We have a new beginning in Massachusetts. I like it so far. I suppose I have to see what it’s going to be like in the winter. My husband says it’s better than Michigan. The sun does shine more and that’s what I love, sunshine. I love my job so far and I’ve made some friends. I really love it. I do NOT like the house we’re renting, but we have a house and I can see the ocean from the deck. My husband likes his work and is doing well. My son likes his school and has lots of friends (almost too distracting). I’m looking forward to exploring New England on the weekends and learning more about the history…the real history. I want to avoid the places that have the cheesy gift shops.

My body is healing. There are some bad days still, but nothing like they used to be. My scars are healing pretty well. The crazy right breast problems that so many of us BRCA ladies have has a few scarring issues, but nothing major at all. I did have a little stitch work its way out today. I found it in the shower today. Even after four months, things are still trying to work back into place. Some might be discouraged by finding that they still aren’t healed after that time. Hell, I would have felt that way just a month ago. Now, it actually gives me hope. The quirks I have now aren’t permanent. My body isn’t done. I am healing. It’s been over a year. I’ve lost a year of activity, but I’ve gained untold time with my family. God willing, I will see my grandchildren graduate from high school. With every day that I am given, I get stronger.

It is a new beginning and I am hopeful.

Well, it’s been quite a while since I’ve posted anything. At first, I just couldn’t, emotionally. I didn’t want to deal with anything BRCA related. Then, I just became to busy and still didn’t want to think about BRCA. I’m now in a place where writing may be therapeutic again. I’m in Massachusetts now and ready to start my new job. My family is on the right track again and things are looking up.

I ended up having to resign my position at the hospital in Michigan, as I was still not cleared medically to return to the Emergency Room. Because I had been out on my leave for so long, the department was able to post my position to be filled by someone else. That left me having to apply to another position in the hospital. With my relocation to Massachusetts coming, no one was going to hire me into their department, so I resigned. As it happens, I had been applying for jobs in Massachusetts, thinking it would take a while to find one that fit my work restrictions. I ended up getting hired right away by a company that investigates insurance fraud, particularly medicare. I have a lot to learn, but as the company is owned by Hewlett Packard, the benefits and pay are very good. I’m excited to get started on Monday.

We’re renting a home because our house in Michigan still hasn’t sold. I’m hoping we can work out a short sale. This market is horrible and it’s been a real headache, to say the least. That is one stress, however, that I’m letting go of. Whatever happens, happens. I’m hoping for the best, but I also know that our credit may be impacted by a less than perfect outcome. So be it. I have a good job, my husband has a good job and we are all healthy. I’m thankful.

Healthy…yep, healthy. I can bitch and moan about all the things I am unhappy with regarding my body and the unfair genetic makeup that led to it, but I don’t feel like it right now. Maybe tomorrow it’ll surface again. Heck, I know it will when I have to try on clothes (a whole new wardrobe must be started as I will no longer have the luxury of wearing scrubs everyday). However, today I’m good-saying to thank you to the negative thoughts that surround my self image. Don’t get me wrong, it’s getting a whole lot better than it was. I’m now getting used to the fact that I have no sensation on my breasts or abdomen. It’s unnerving and annoying, but it’s not triggering the extreme negative feelings it did before. Yeah, one breast is bigger than the other, but most people have that issue..that’s nature anyway, right? There are some things that will need to be fixed later on down the road, like touch ups. I have a weird “divet” in my cleavage area that is very apparent when my chest muscles are used, even a simple arm movement makes it appear. I guess there are fat transfers they can do to fix that. Right now, I want to wait on any more touch ups until my body is completely healed. My abdomen is a lot better than it was. The seromas are going down and the swelling is improving, slowly. I’m not sure if the muscles are fixed…it feels very strange on the left side when I contract the muscles even slightly. When the swelling is gone I will have it all re-evaluated to make sure it’s a successful repair, then consider the more cosmetic stuff. At the moment I’m looking forward to wearing sundresses all summer-something that I wouldn’t consider a month ago. I’m okay with the boobs and I know the swelling is going down in my abdomen. Now, I just need to work on getting the weight off. It’ll be hard with my schedule, but I can’t wait to get back to the gym. One day at a time.

While my BRCA status and the repercussions of it are continuous and something I will have to live with forever, I’m praying that my children will be spared. Ali has been tested and we should have the results in about a week. We’re waiting for the results to have any serious conversations about what to do. There’s a convention in Florida next month, the FORCE (Facing Our Risk Empowered) convention. If Ali is positive, I’m going to do everything I can to try to get to it with her. FORCE is an incredible organization with so many resources and information. I was hoping to go anyway, but if Ali is positive I think it’ll be so important for her to be there to help her make some informed decisions. We’ll see what happens.

Today, I have to run around and get things ready for work on Monday. It’s going to be a very busy afternoon. The sun is shining and the birds are singing. There’s a breeze coming from the ocean (which I can see from my deck-woohoo). Today is a good day.

This has been a slow healing process that I’m about fed up with. I now have a seroma (a pocket of fluid) above my incision on the left side. On the positive, and boy it is so positive, my muscle has not detached again. I noticed swelling after returning from New York, and no I did not over do it or lift/push/pull any thing I shouldn’t have. I was assisted with my one small carry on, by fellow passengers and it rolled without any difficulty. The swelling has been getting  a little worse so I went to the ER to be sure the muscles hadn’t detached. There’s so much nerve damage from the surgery that I don’t think I would feel pain if they detached again. It didn’t really “hurt” before. Anyway, the muscle is intact but I have this seroma. I don’t think it’s so big that it needs to be drained, but I’m being referred to a general surgeon here in town to evaluate it. Please, please, please let it be small enough that my body can handle it on its own. To be honest, the longer this goes on the wimpier I’m getting, which really pisses me off because I’m no wimp. But I seriously felt woozy when they did my IV the other night. Really? This is getting ridiculous. If they have to drain it they’ll be putting a needle into my abdomen to aspirate the fluid. Ugh. Please, no. I’m discouraged because the swelling is worse if I do even minimal stuff, like walk around the grocery store. I’m hoping the surgeon will tell me it’s okay and I can go for walks, the swelling will gradually get better and I’m not making anything worse. I hope. Because today was beautiful, even from inside the house. The sun was shining. I did go outside with the dogs in the backyard. It was cold and the snow that covers my backyard is now a thick blanket of ice but the sun was shining so brightly. This weekend is supposed to be sunny and in the 40’s. Woohoo!! A short walk around the block should be okay. I’m supposed to go back to work the first week of April, so this has to be fixed, like now. I’m tired of being stuck at home and I miss the interactions with people at work. Being off work for a while is one thing, especially when you work in a crazy, busy, emotionally charged place like I do. But being off work and not interacting with others on a regular basis for this long is just madness. I’m not one to “put myself out there” and invite myself to hang out with people, so I end up alone. I do it to myself so I have no one to blame. That’s one thing I have to work on. Anyway, I’ve made a decision to pick my head up. I was telling a dear friend that it seems as though I’ve been trudging along with my head down, eyes on the ground, not looking around at where I was going or who was around me. These negative things keep crashing down on me, still I don’t look up. Maybe if I pick my head up, open my eyes and engage in my world around me a little more, letting go of the negative, things will be easier. Maybe the bad will be there and maybe there’s more to come, but it’ll be easier to cope with. I just have to let it go and make room for the good around me. That’s what I’m going to do.

We went to Ali’s genetic counseling appointment the other day. Ali spoke as an adult who is well informed. She is well informed, but there are things she didn’t consider that we both needed to hear from the doctor. Fear is a very powerful emotion and hasty decisions guided by fear are usually not the best. Ali has decided to wait for any surgeries until she has children, provided her test is positive. In that case there is not a lot that will be done, other than being very vigilant about screening and living a healthy lifestyle. We are going to secure a good life insurance policy for her before she gets tested. We should know more about that by the end of the month. While there is a federal law that protects from discrimination by health insurance companies, there is no legislation about life insurance. I don’t have a policy, other than the maximum I can get from work. I’m told, however, that if I were to be denied I could appeal it and probably win because my cancer risk is now significantly lower than that of the general population. Who knows what sort of changes will happen by the time Ali has children. There may be legislation in place regarding life insurance by then. At any rate, the plan is to get some sort of policy in place for her, then get the test done. For now, the test kit sits on our counter, waiting. It’s right in the open, where we can see it, but I don’t feel like the fear of it has any control over us anymore. Oh, the fear is there and until the results come back negative, it’s not going away. But the fear is not controlling anything. Not anymore. Ali and I make a good team. We give each other strength, that’s all we need…no matter what happens.

Well, I haven’t written because some serious stuff was going on and I wasn’t sure if I could trust myself to write without going off. After all my family has been through over the last few years, I am now having huge marital problems and talking divorce. Andy has encouraged me to see an attorney so I’ll know that he’s being fair with me (he’s an attorney). We went to a counselor who we thought was good. People go to counselors when they believe their marriage needs help and sometimes when they believe their marriage is too far gone. But the act of going to a counselor shows that some effort is being made. That’s where I was in my mind. When emotionally charged statements of the marriage being over were made, I was shocked that the counselor agreed. What the hell? Isn’t she supposed to give us tools to work on it? Isn’t she supposed to talk us back from the ledge instead of agreeing that it’s over and looking at the clock the whole time? Oh yeah, she also ranted about how peeved she is about so many people filing bankruptcy. Bankruptcies are part of what my husband does for a living and, I swear, this woman took about 5 minutes (2 different times) talking about how it frustrates her and doesn’t my husband get frustrated, too. Needless to say, it didn’t help anything to go to her and I wouldn’t recommend her to anyone. It only made things worse. That’s all I’ll write about that for now…not sure how personal I want to get with this, considering my husband’s life and feelings are involved. No matter what happens, my husband has been my best friend for 15 years and I don’t want to say or do anything to hurt him.

I had the week with my husband and son, visiting from Boston. It wasn’t the greatest time, as I said, but I was so happy to have my son here. I missed him running around and just hearing his voice. He’s 12, so the affection is on his terms at this age. Man, it’s like winning the lottery when he wants to cuddle. It’s the best feeling in the world. The week went by much too quickly. When they left yesterday I felt so sad; sad that things are the way they are with my husband and sad that my son was leaving again. At least I only have to wait a week to see him again, so it’s not so bad I guess. I’m going to watch him play in a hockey tournament in Lake Placid next weekend. He’s on a great team and has made a lot of friends. I’m just relieved he’s doing so well getting adjusted to his new home. So, I’ll see him next weekend, then again in mid-March. My husband has to be in Michigan for a week to finish up some cases. Rather than have my son miss school, I’m going to go be with him in Massachusetts for that week. Then I’ll have to wait about a month to see him again for his spring break. After that I’ll see him for our daughter’s graduation in June. I’m hoping I’ll be able to move at that time….hopefully the house sells. Just thinking about all this makes me miss the days when the kids were younger. We were always together as a family, always. We were happy and it was so much fun. Can’t avoid the age thing. My daughter’s going away to college after the summer and my son is becoming a young man. I’m so proud of them and I look forward to seeing how their lives will grow, but my heart still aches for the younger years.

All these emotions yesterday led me to retail therapy. I’m not sure how I feel about that term, but it is so accurate and I craved it. My daughter and I went to the mall. I haven’t been to the mall in months and I thought I could handle walking around for a bit. I knew at the outset that I would see things I wanted, but they wouldn’t look right considering where I am in my healing. I was prepared. So when I tried on a couple of shirts I didn’t let myself get bummed out. I ended up getting a couple of little things for my daughter, some good lotion (Michigan winters are murder on skin) and some nice stretchy pants that aren’t black. I’m still in the healing phase where jeans are tolerable for only a few hours and I live in my sweats and black is the only color I have. Comfy grey, you know the color so adventurous and furthest from black you can get, pants were just what I needed. I also got a few bras that fit well. My body has changed so much since my procedure that even the bras I bought after my DIEP were uncomfortable. Good bras aren’t cheap so that put me at my limit. By the way, are bras THAT expensive to make and why the hell is so hard to find a comfortable one, even when  you haven’t had a mastectomy and breast reconstruction? And why are the comfortable ones so damn expensive? I suppose I could write an entire blog post about that experience alone. I tried on an armful of bras and it was NOT fun. I ended up with 2 expensive brands (on sale) and one moderately priced bra. After that, I decided to wait a couple more months to look for “real” clothes. I’m going to give myself time to heal more and get some weight off, before I buy anything else.

We spent a little over 2 hours at the mall. I didn’t lift anything, push/pull, or strain myself in anyway, other than trying on a boatload of bras. I didn’t walk fast, just a stroll through the stores. By the time we were ready to leave, I was READY to leave. I was exhausted. I’m still wearing the compression garments that I’ll probably have to wear until summertime. My abomen felt so tight and firm under the garment..I was just swelling up. I’m only 4 weeks out from a major abdominal surgery. I forget that sometimes..it seems like longer. Just an aside..my surgeon described the area of my muscle that was detached and I was so surprised. I knew something was wrong, but I had no idea that it was about 6-8 inches in a sort of triangular shape what was rolled in on itself like a window shade. She said she did heavy suturing then placed the mesh, so yeah, it was a major repair. After the mall, I came home, got in the recliner and relaxed for a while. Then, I helped my daughter with her hair and makeup for a party she went to last night. That was fun. She was making me laugh so hard, also not great for a healing tummy but we couldn’t help it. When it was all said and done, I zonked out at about 10pm and didn’t even hear my daughter come home.

This morning I feel like I did manual labor yesterday, so I’m going to be sitting on my butt today. I’m supposed to be able to go back to clerical work at the end of March. Hopefully the next 4 weeks make a world of difference in my strength. I’m going to start with baby steps so I can keep up when it’s time for me to go back to work. We’re supposed to get another mountain of snow tonight and tomorrow, so I’ll start short walks in the neighborhood once the terrain is safe for me-couple of days should be good. I, literally, cannot wait to be able to do more physical activity. It takes a lot out me, emotionally, to be in this state. I have so much empathy for those who lose mobility with little or no hope of getting it back. I cannot imagine how I would handle that. I’m mopey being cooped up in a dismal climate, but I believe I’ll be getting back to my physical self as it starts to get warmer. The rest of me remains to be seen. There’s too much to think about, I can’t even plan. I’m just going to take it as it comes and try to keep my head above water. Breathe….just breathe.

 

I haven’t felt like posting lately. Things just sort of hit me pretty hard in the last few days. I’m not sure what happened. Maybe I haven’t dealt with the emotional part of all of this enough. I’ve been cooped up and separated from half of my family, which puts me on edge anyway. But, I really think there are emotions here that I haven’t allowed myself to address effectively. There were triggers to a meltdown. My daughter’s genetic testing has been scheduled for the 25th of this month. Watching the news, I saw a report on a study that found an increased risk in pancreatic cancer from drinking just two soft drinks a week. Pancreatic cancer is another one of the cancers associated with my genetic mutation. Both of my children have a 50% chance of inheriting my mutation and my son drinks a lot of pop. I changed position on the couch, while watching this report, and my arm moved against my breast. I didn’t feel anything, except on my arm of course. I burst into tears.

How unfair it is that I have lost both of my parents. How unfair it is that I have lost a year of my life, my job is a wreck and co-workers have lost respect for me there (which just pisses me off because those people don’t get it). How unfair is it that my kids have this weight over their heads. How unfair is it that I still have to be careful with how I move, pick things up and bend over. I was crying like I cried when I lost my parents. From my soul. I wanted to break things. I didn’t. I called my husband and sobbed for a long time. Oh yes, this was an extreme “woe is me” moment. It took a long time to purge myself and my husband was there for me. He always is, when it comes down to it. When I finally calmed down and got off the phone, it was after 11:00pm. Still, I washed my hair, which made me feel better. Then I check my email and had two messages that went a very long way to making me feel more whole.

After all of this, I’m still thankful that I was able to find out my genetic status. Mad that it is what it is, but glad I was able to prevent cancer. What kind of choice is that? Mutilate your body, lose standing in your workplace, strain relationships, or face an 87% chance of getting cancer. Still, it was a choice I was able to make. And I pray that my daughter will be spared that choice. I’m trying to continue to see all the positive things in my life. Why is it so hard for me to hold on to those things to get me through? Some people are so good at it. I get mad at myself and feel guilty that I don’t have the strength to focus on the positives: my family, my health (I just have to heal and I will heal), the support I do have from all over the place, I could go on forever.  I’m weak and stuck in a vicous cycle of emotions. Just typing about it wears me out. So, there, that’s enough of that.

Now I’m going to get ready to make my first outing on my own since my surgery. I’ve taken no medication today, so I can drive. I need a few things from the grocery store. I’ll take my own bags and bag the items myself, so I know they’ll be light enough to carry. At least I won’t have to drive the motor cart today. Hey, two positives!

So, the drains are gone! I was so freaked out about these being pulled. I just knew it was going to be worse than the two previous times. I was right. Maybe some of it was because I got myself worked up, but it truly was worse. I’m thinking it’s because I had a lot more going on this time. The mesh was put in my abdomen after a lot of work was done to reattach my muscle. It was no simple procedure. The two previous times I didn’t even feel the drains come out. I was surprised when it was over. This time I felt the tubing moving through my abdomen the whole way. It was painful, yes. But, more than that, it was unnerving. Yuk! I actually had a vagal reaction, got all pale and had to elevate my feet a little. That was hilarious. I’m still laughing about it. They gave me some juice and took some more glamorous photos (hahaha-nudies of the fat lady) for my chart. Afterward, Ali was pleasantly surprised that I could do a lot more without her help now that the drains were out. Without the tubing pulling on my skin and the pain they caused, I could get my compression garment on almost all by myself, along with my pants. Yippee!! Ali’s almost off the hook.

It’s amazing how much more whole I feel. It’s the oddest feeling to have tubes coming out of your body, draining fluid. It’s dehumanizing. I’m still moving slowly. I have discomfort and downright pain at times. I have to be off work longer than I thought. However, once again, I’m aware of how fortunate I am. Because of scientific advances, I was able to take steps to prevent cancer. I have had complications, but the reasons for the complications have been discovered and I’m on the road to getting back to myself. I’m thrilled. Thrilled, thrilled, thrilled. You know the thing I’m looking forward to most? The gym. Not just going and getting on an easy machine. I want to feel my muscles again. I can’t wait to get back into spinning classes, lifting weights, yoga, all of it. I’m on my way! Now, to keep this positive feeling going….

This is just a short, sleepy post.

I’m tired, but I can’t sleep. I think I’m nervous about possibly having the drains removed tomorrow. I KNOW I’m nervous about that. I’ve been through some major surgeries and, for some reason, the drain removal thing always messes me up. The two times prior to this were no sweat. I was worked up for no reason at all. One would think I could calm myself based on that alone. Nope. Nothing doing. I have pain on the left and a big firm area below the incision. I’m worried the tubing from the drain might be looped in that area and it’s gonna hurt like crap when it’s pulled. Ali is driving me to the surgeon as soon as she gets out of school so I’ll be taking percocet about halfway there, just in case. Okay, moving on…the more I think about it the worse I feel.

I started doing some video, or trying to at least. I’m terrible at editing and converting files and uploading and all that techie stuff. So I have several files and I can’t do anything with them. Ugh. My goal is to start  some video blogging, or at least compiling some videos for later use. I’m hoping I can actually film some visits to the surgeon, maybe even the removal of the drains…if they’ll allow it. Doctor’s don’t usually like being filmed, so I’m not too hopeful about it, but we’ll see. I can handle the filming just fine. It’s making the files look and sound right that’s hard. I can really make the images nice with my adobe program, but the audio and video are out of sync. I can’t figure out how to fix it so I can upload it to the internet. Big learning curve, but I’ll get there. I have the time to obsess over it at least. I’ll post the information once I get things figured out. It may take a while, though.

For now, I’m going to try to get so many things out of my head and get some sleep. Of course, the first is the drains. Even if it hurts, it’ll be over quickly and my doctor is wonderful. The other things are family and friend issues. I miss Andy and Brennan so much it’s truly painful. I miss my family and friends in Arizona and one of my best friends ever is becoming a grandmother even as I type. Her daughter was 7 centimeters, she just got her epidural and they broke her water. I wish I could be there with her. I’m away from friends at work and kinda cooped up, which is starting to get old. But, the silver lining is that Andy and Brennan will be here in one week and I can’t wait! Brennan has the whole week off school so I’ll get some quality time with the whole family.

On that note, I’m going to try to get some real sleep. Thinking about the family being all together again is making me feel much more at ease. Ahhhh, sleep. Goodnight, my friends.

I’m bored. I’m in just enough pain that motrin, alone, won’t take care of it. I sleep on and off all day and night and I’m bored out of my mind. I tried to teach myself to crochet last year, maybe I should give it another shot. I have a book next to me that I’m re-reading. My plan is to hit the bookstore when I finish this book. Last time I went to the library I couldn’t find anything I wanted to read. I’ve caught up on all episodes of Tudors, United States of Tara and Nurse Jackie. I love the first two, but Nurse Jackie leaves a sour taste in my mouth. Nonetheless, I keep watching it. I’m just twiddling my thumbs until Weeds comes back. That’s my show. I could, finally, get my photos scanned in to the computer. Yeah, that’s what I’ll do. I’ll get Ali to bring up the boxed photos, bring down the printer and I’ll go to town. Maybe.

We have an open house scheduled for Sunday. Keeping up on the house is easier with Andy and Brennan being in Boston, but it’s still hard with 3 dogs. Being laid up is making things that much harder. Can’t lift, push or pull anything so all the cleaning is on Ali, poor girl. She’s not thrilled, but she’s doing okay. Yesterday she helped me get groceries. I don’t recommend grocery shopping on pain meds. Somehow we spent way too much money. I drove in one of those crazy amigo things and I managed to avoid running in to anyone or anything. Ali pushed everything in the cart and I didn’t even realize how full it was until we checked out. Bad idea. Today Ali helped me fix the washing machine. We used the high suds soap (bought the wrong kind) without realizing it and the machine just konked out. Turns out, there was a very good reason it gave up. I had Ali empty the filter thing at the bottom of the machine. I would have given up, too. It was gross. We fixed that and the laundromat is back in business. Which reminds me..Ali said we could always take the clothes to a laundromat. I requested that she not make me laugh. She’s helping with everything, but it’s almost always accompanied by a “why me” or “not again” face. I told I could only imagine the looks I would get if we had to go to the laundromat. She didn’t argue with that one. Good thing we found an easy fix. So I’ve got a daily list of what needs to be done before Sunday and I have with cleaning coming on Friday. We’ll be ready for an open house on Sunday.

I’m going to relax tomorrow, have lunch with a friend on Thursday, go to the doctor on Friday to, hopefully, have the drains removed. By the time I head back to work, I’ll have a lot more photos on the computer and I’ll be crocheting up a storm. Hahahahaha. Maybe.

Well, my follow up didn’t go quite as well as I had hoped. I still have the drains. Until the output is almost gone, they have to stay. When it’s all said and done, I’m okay with that. The alternative would be worse if they were to be pulled too soon. The risk of developing a seroma is too high. I don’t need any more complications. For now there is still significant swelling on the left side of my abdomen and a weird, hard area below the incision. That spot is painful, too. There was some concern on the doc’s face when we were looking at that, but we’re only one week out from surgery. As she said, she was “monkeying around” in that area so we’ll keep an eye on it. I’m also restricted from work 2 weeks longer than originally planned. I’m hoping to go back to light duty after the 21st.

The drains remain…2 bulbous friends set right in my abdomen area. Exactly where I need more girth, right? I have them pinned to my post surgical garment (very sexy) so they don’t fall and pull. I’m trying to pin them strategically so it looks like I have something in my sweatshirt pockets. Yeah, I’m wearing hoodies all the time to try to hide them. They would just freak people out if they were visible. Nasty looking if you’re not used to seeing that kinda stuff. These things make everything difficult. It takes me a good, long time to get out of my garment, without dropping the drains and yanking on them, pin them to a shoestring around my neck and get in the shower. ..then reverse the whole process to get dressed again. It takes forever. Thank God, I have have Ali helping me. I don’t know how I could do it without her. The damn garment is so tight, getting the clasps hooked  would be impossible without help since I can’t pull or push on anything. Ali scolds me to get my hands out of the way if I even come close to trying to help. It’s hard. The bathroom is always hot when I’m done with the shower so she gets all sweaty just trying to get me dressed. It’s all something we’ll laugh about later. Heck, we’re already laughing about it now. Hilarious stuff, man. Seriously though, poor girl.

We spent the day at her doc for GI stuff and then driving to Novi for my doctor. Ali was so funny when we were done with my doctor. She was disappointed that it was so quick because we drove an hour to get there. I told her I would drive 5 hours to get to this doctor even for a 5 minute appointment. She said, “You weren’t the one driving.”  Good point. Plus, she had to deal with my back seat driving. I really am bad about that. Impossible. Poor girl.

Once we were back in town, we stopped at the bookstore. Somehow, I managed to leave my book somewhere in the Sparrow Professional Building. I was re-reading the Red Tent so losing the book didn’t upset me too much. It was the bookmark. Man, I liked that bookmark. It looked like a tapestry rug, sorta. Nothing fancy. No silly strings attached. No pictures that might clash with whatever mood the reading put me in. I know, I’m weird. I checked with security to see if the book had been turned in. Nope. I hope someone gets some enjoyment out of their find. It really is a great book. It didn’t take too long at the bookstore and I replaced the Red Tent with a history book about King Henry VIII’s children and a DaVinci Code(ish) book. Oh, and a new bookmark. Not a good one, just one of those little things that looks like a big nose and two hands hanging on to the top of the page. Hey, it was only a buck.

As far as productivity goes, I got a lot of my photos scanned. Now I have to edit them and organize them into folders. I have an entire second box to scan. That will take forever, but I’ll get started on it after the open house on Sunday. I feel good about this past week, though I was so bored. This week will be better. I’ll be more awake as I need less pain medication and I regain strength. Maybe I’ll pull out the crochet bag….maybe.

Tomorrow, I look forward to hearing how my unbelievably terrific son did in his hockey game. Andy says I won’t believe how well he’s skating. It’s true, Brennan has always skated up or down to the level of his teammates. He’s on a very good team out there. Apparently, he’s fitting right in. It kills to be away from them. Anyone who knows me well, knows I am a nut about my kids sports. I love, love, love hockey and lacrosse seasons. There is an amazing feeling I get, watching my kids play sports. Now, I’m missing it. I never miss it. I’ve only ever missed a handful of games, even when I worked midnights. Right now, in spite of being laid up and painful, the hardest thing is having the family split up. We talk every day, but I miss my boy so much. They’ll be here in 2 weeks. Brennan has a week break in his school schedule and Andy has some work to do here. I’ll have a whole week with them! I can’t wait. I can’t wait. I can’t wait.

Here I am again. I have 2 drains this time. But, this time, I keep feeling like I want to laugh. I’m happy. I am so happy my surgeon found the problem. I had been complaining about the abdominal bulge forever and I know she was getting a little frustrated by it. My CT scan showed no hernia, but I was insistent that something was there. My surgeon here in Michigan, Dr. Studinger, had me call my Texas surgeon, Dr. Spiegel, to run it all by her. I was told I needed another surgery to place a mesh like material in my abdomen. Dr. Spiegel thought it was probably an issue with the facia, which isn’t uncommon. Turns out, she was wrong, which isn’t her fault. She wasn’t even able to lay eyes on me, other than the photos I emailed to her.

Dr. Studinger opened me up and didn’t see anything right away. She was going to secure the support material and close me up, but decided to take a closer look. I’m so glad she did. She didn’t have to. All looked normal; she just wanted to be sure. She found that my muscle on the left (a portion of it) was actually detached. It was unattached and folded in on itself, toward the middle. I knew it! I am very lucky to have found Dr. Studinger. It’s been a little strange having had 2 surgeons, but Dr. Studinger is wonderful. So, here I am with the source of my problem finally discovered and actually fixed.

Of course, the chances of recurrence are high, so I have to be extremely cautious. I’m just elated to have it fixed and in 6 months I can be back to normal. Perfect timing. Six months until summer. My favorite time of year. Six months until I can be back in the gym doing spinning classes and lifting weights. Six months until I can go on a roller coaster, camping and hiking without being a burden to my family. Hahaha I can’t wait!

For now, I’m emptying the drains twice a day, watching for signs of infection, coughing and deep breathing to avoid lung issues and getting lots of sleep. It took a lot to get my pain under control while in the hospital. I only had to stay one night, but this hospital won’t allow fentanyl IV unless the patient is in the ICU. I can’t take morphine or dilaudid without extreme nausea and vomiting. With my abdominal incision, I couldn’t take the chance on vomiting. I knew fentanyl worked from my last surgeries, but I couldn’t move to the ICU because there were no beds. I had to pee so bad and ended up holding it for about 2 hours because the pain was too intense to get out of bed. I thought I would pass out or vomit, or both, from the pain. After a few hours of having a duragesic patch in place and taking percocet, I was able to get to the bathroom. The pain was still incredible, but I no longer felt like I would pass out or vomit. And in all the drama of pain and lack of pain control, everyone was very caring, but for one nurse. They even had the ICU doc come for a consult and I was given the option of moving. At that point, it would have been ridiculous to take an ICU bed, not being critically ill. I chose to stay where I was and the pain gradually got better. Every time I got up I was moving a little better than the last. Just like a pro, lol. Ali was so helpful and they let her sleep in the room with me. My daughter is amazing, truly.

I want to apologize for how choppy this post is. I blame it on the pain medication. With that said, I want to tell you some crazy things that happened. Overall the stay was great and everyone was so good at their jobs, until I left. The tech couldn’t get my IV out. I was trying not to hurt his feelings by saying don’t touch me and let me do it myself. It was like a train wreck. When it was finally out, he pushed me in the wheelchair to the discharge bay. He drove so fast over the bumps I was no longer concerned for his feelings. I wanted to punch him. Ali went to get the car and the guy says I can get up so he can help me with my coat. I get up and he doesn’t help with the coat. I did it myself and thought I pulled a stitch in my breast (touch up work). I was so mad at this point. He had to swipe me into the ER area so I could go in the bathroom to look. Everything looked okay so I went back out to meet my daughter. Only I couldn’t get out. There was a lady loading a copy machine with paper. I hobbled over to her. I knew I looked like hell and my face was all red because I had just looked in the mirror. I asked the lady to let me out. She said security had to do it. I thought, okay let’s get security. I hobbled around in a circle, looking for security and asked her again. This time she raised her voice at me. Bad idea. Turns out she’s an ER greeter. She got a royal complaint against her they opened the door for me. What the heck? It was so strange. My stay was great but my discharge was hell. Then, driving home, we got a road rage college kid messing with us. The freeway went from 3 to 2 lanes and this guy was apparently in the lane that was ending. I was faded out from the pain meds but became very alert when the guy started messing with her. I woke when Ali said some explicative and couldn’t move over for this guy. She had the car on cruise control and the guy was trying to jet past. I told Ali to slow down, but the guy dropped back just then. Of course he kept messing with us, by pulling up and flipping us off and boxing us in with other cars. I had to call 911. Crazy! After about 15 miles of this he finally got off the freeway and left us alone.

So there is my update, choppy as it is. I’m home safely, I’m happy with the result and love my doctor. I’m excited that my life is back on track, so excited. The only thing missing now is my husband and son in Boston. It’s all in the works, though, and I can’t wait.

Last night I ate a haagen-dazs ice cream bar, preparing to start weight watchers this morning, A-GAIN. It will be a while before I can do a lot of physical activity to get the weight down and, frankly, I can’t do this by myself. I have had enough of everything right now. Don’t get me wrong, I’m in good spirits. I’ve just had enough.

The complications in the abdominal incision may, or may not, have led to a bulge in the left side of my abdomen above the incision. I have complained about this at least since July. It’s something we’ve “kept an eye on”. I’ve had to take things easy and limit activities that can strain the abdomen. Hello! That’s damn near everything. I roll over in bed and I have to use my arms and legs to work myself into position. With the added weight I have I seriously have the mental image of a sea lion moving around on land. Okay, at least I didn’t say “beached whale”. I’m not there yet. But it’s not easy getting back to sleep after I’ve been made acutely aware of my weight and decreased mobility yet again. I was told, a while ago, that I could do some light working out as long as I didn’t isolate my stomach at all. I tried minimal activity at the gym, but I just swelled up and the bulge would feel harder. When I came back to work after my second surgery it started to get even worse. I would swell so badly, my compression garment was too constricting after only four hours into my shift.

Something’s wrong and I felt like not enough was being done to figure it out. I’m 8 months out from my DIEP and I should be back to full activity by now. I got my surgeon to order some tests. We ruled out a hernia, but the surgeons feel it’s an issue with the facia. So, I’m scheduled for another surgery on Thursday. This time, they will put a mesh in, hopefully alloderm, to support and strengthen the area of the incision. They symmetry issue of the nipples will also be taken care of-hopefully I’ll be done after this. I have such a rough time with surgeries, and I’m  no wimp. My body just takes it hard. After the last two I required transfusions and after the second I was admitted for almost a week. One of my co-workers, a friend, was one of the providers that cared for me on that admission. When I told him I needed another surgery, he said, “Geez, that makes me sweat-and not in a good way”. I laughed, but it’s true. It’s scary.  I’ll be off work for 2 weeks, then on light duty for 6 months. Which means, I will not likely return to my emergency nursing before moving to Boston. This makes me sad. I have friends that I will miss so much. I’ll miss the work. I complain a lot, but I truly love making someone’s life a little better, even if it’s for a moment.

Two days ago, I took care of a 2 year old boy and I just fell in love with him. I was helping another nurse as we prepared to do some procedures, including starting an IV. He kept smiling at me as his aunt was reading a book to him while we got things ready. In the middle of the trauma of a urinary cath, he pushed a toy and the book away (family was trying to keep him distracted) and said he wanted me to read him the book. He was crying and needed the distraction, but he wanted ME to distract him. Even after I started the IV on him, he still gave me a hug. Yesterday, I made some patients laugh about silly things while they waited for lab results or I started IV, or other not so grand things. These are the moments that make me feel better. The moments I will miss. The moments when I know someone’s bad day was a little better because I was able to help them.

Today, Tuesday and Wednesday are my last days on the floor in the emergency room. I believe everything happens for a reason, just the way it’s supposed to. I’m on a path and I’m not sure where it’s headed right now. Well, that’s not completely accurate. I know the general direction, the lighting’s just a little dim. Soon enough, the lighting will be brighter and I’ll have more solid footing. For now, it’s like getting up in the middle of the night to go to the bathroom. I know where I’m going and I know the layout, but did I remember to pick up anything that could cause me to trip? That’s what it feels like to me. I have so much to be thankful for and so much to be hopeful for. When the light is shining brightly in a few months, I pray all will be well with my family, we’ll all be together and with new friends in Boston. I hope to be be back in the gym, doing all the things I miss. I hope to be in a job that brings me joy. I hope to be either teaching again, or back in school myself. Bring on the light!

I had a friend ask about the medical stuff I post. This is for you, Aida. Thank you for the love and support you give me! I’ll talk a little about all of it, from the beginning, but I’m not an expert on any of it. This is just information I have learned as it relates to the experience I had.

BRCA 1 and BRCA  2 are the Breast Cancer Genes 1 and 2. They are rare genetic mutations that have been found to be associated with an increased risk in the development of breast or ovarian cancer. There are hundreds of these types of mutations, but only 2% of general population have any mutation at all. Approximately 90-95% of breast cancer is NOT caused by BRCA mutation. My specific mutation is 1083delG, which means that is the specific location of my mutation on the gene. I am BRCA 1 +, but no mutation was found on BRCA2. I have a friend that is positive for both. The general population has a 12% risk of developing breast cancer and a 1.4% risk of developing ovarian cancer. My mutation increased my risk of breast cancer to 87% and ovarian cancer to approximately 44%. There are other cancers associated with BRCA1 and 2. I also have an increased risk of melanoma and pancreatic cancer. The males in my family, if they have the mutation are also at an increased risk of prostate cancer. Each of my children have a 50% chance of inheriting my genetic mutation. (Some of this information was obtained from labtestsonline.org)

Prophylactic (preventative) bilateral mastectomy (PBM) is one of the options in dealing with a BRCA mutation and it’s the option I chose. Some women choose to be hyper-vigilant and have more frequent screening to include MRI and lab tests. Once a decision to have a PBM is made, there are different types of surgeries available and different options for breast reconstruction. I chose the Deep Inferior Epigastric Perforator surgery, which used my own belly fat to make new breasts (called flaps). During this surgery, a general surgeon removed my breast tissue and nipples, while sparing the skin. Some women choose to keep their nipples and some choose not to spare any tissue. In case of removing all skin and nipples (usually when an actual cancer diagnosis is made) reconstruction choices are limited. These women usually end up with expanders, which are like implants under the skin where the actual breast implant with go later. Every week, more saline is placed into the expanders to stretch the skin in oder to accommodate the implants later. When the skin is stretched enough and the pocket is big enough, breast implants will be placed in another surgery. Again, in my case, I had no cancer diagnosis and chose to spare my skin. The breast tissue was meticulously removed while the plastic surgeon harvested my belly fat to make the new flaps. The abdominal skin and tissue was separated from my muscle and belly button. The blood supply for the new flaps was harvested by making a perforation in the abdominal muscle to obtain blood vessels underneath. Using microsurgery, the vessels are attached to the vessels in breast area when the flaps are transferred to the chest. During this time nerve endings are also reattached in the hopes that some sensation will return. There has been some success with this, though not yet with me. After the tissue for the flaps was removed (the belly skin was discarded) and brought up top, the space was closed by pulling the edges together. The incision below my belly button was pulled down to meet the incision above the bikini area. A new belly button was made and I have an abdominal scar that goes from hip to hip.

During the surgery, Doppler wires are placed in each flap to detect bloodflow every hour after surgery. There is a risk of the flap “dying” if blood supply gets compromised. There are also drains placed to remove excess fluid accumulation after surgery. These drains are clear, plastic bulbs attached to long clear plastic tubing which is embedded in the surgical area. I had two drains in each breast and one drain on each side of my abdomen. The bulbs are squeezed tightly, expressing all the air, then capped. This creates a suction that removes the fluid. Twice a day, the drains are emptied and the amount of fluid is recorded. This is a guide that is used by most physicians to determine when the drains can be removed safely. A complication of removing the drains too soon is a seroma. This is just a buildup of fluid that has nowhere else to go and is too much for the body to reabsorb quickly enough. It’s not infected fluid, though it can become infected. Often the fluid buildup is very painful and needs to be drained every week until the body heals. Calcified areas can remain after the seroma is gone. I’ve read about people who had no drains after surgery and the complications were horrific. I don’t like the drains and the skin around the sites is tender and painful when I move, but I would gladly endure this to avoid the other possibilities.

I think that’s most of it, in a nutshell. Let me know if there are other questions and I will post information, or links, to explain it.

Did I really think there would be down time from the whole BRCA stress? Nope, that’s never going to happen. I’m just going to have to learn how to manage the stress better. Learning about my genetic mutation has allowed me to learn a lot about myself. It’s not all bad stress. But today, it’s leaning toward the darker end. My daughter, almost 18, no longer wants to wait to get her genetic testing done. She has in her mind that she will get the prophylactic bilateral mastectomy as soon as possible, if she is positive for the mutation. We, obviously, have a lot of talking to do. The main thing I want her to consider is the impact on breastfeeding when she does have children. This surgery is a big step to take and she’ll be missing out on something I consider to be one of the biggest blessings in having children.

I told my husband and he literally flipped out. Ali is very young to make this decision, I get it. I just don’t want to make this decision harder than it has to be for her. She is, ultimately, the one who has to make the decision about her own body. She remembers the death of my father, who was like a father to her as well. She was old enough to know the pain we all suffered with my mother’s illness. My mother’s death did it’s damage to her. Like me, she’s terrified of what the genes have in store for her. I won’t tell her she can’t have the testing done. I won’t tell her she can’t have the surgery. I just pray her test is negative so we don’t have to go down that road.

Ali’s never been one of the girls who is focused intently on her appearance. Yeah, we can be late someplace because she’s taken too long getting ready. That’s in her genes, too. What can I say? But, overall, she is so far from the hair/makeup type girl that it’s actually frustrating to me at times. She’s never cared about boobs. In fact, growing up, her whole thinking was “less is more”. Now that she may be faced with this decision to have them removed and reconstructed, I know it’s easy for her to say “let’s do it.” That is not a make or break part of her body image. I’m proud of that, yet it worries me. I don’t want this decision to be easy. Yes, I want her to be comfortable and happy with whatever she decides to do, but I want it to be a heavy decision.

This is my funny, beautiful, strong willed, incredibly intelligent, stubborn, true spirited, angelic daughter. My baby girl whose hands I look at now and still see the little baby girl hand holding mine. My girl who used to laugh so hard it would make her get hiccups and when she was a little baby she would spit up from laughing so hard. That was a warning I had to give everyone. You’re gonna make her barf if you keep that up. But her laugh was infectious and hilarious, so she spat up a lot. This is my girl who I used to watch sleep, marveling at how big her eyes looked even when they were closed. I used to watch her run on the soccer field with the other little ones, chasing the ball all over the field, bunching around the ball, not knowing what to do once she was close enough to actually kick it. My girl who’s true spirit held me physically and emotionally when my dad was taken away. My girl who’s courage blew me away over the years of riding horses and getting thrown, a lot. She rode the biggest breeds, making it look so easy. She even made falling off look easy, landing on her feet a couple of times. My girl, who is now grown and looking for colleges. She loves to engage me in conversations that will frustrate me, things like philosophy and alternate universes, things I can’t get my brain around. My girl, who has become my friend, who I am ultimately proud of and would fight to the death to protect.

So, we are scheduling an appointment with a genetic counselor for her to be tested. They may not test her until she’s 18, but that’s in April so I’m hoping they’ll do it. Then we’ll do the counseling part and maybe even a regular counselor to cover all the bases. I just want to make sure she makes the right decision for the right reasons. I don’t even know how old she’ll have to be to do the surgery. I saw there was an 18 year old in England who had it done. I didn’t tell Ali. If she’s positive, a lot of things will have to be considered and it will be a long, emotional road.

This is actually 2 years old-gotta scan the new ones

Every day “funny” has a different definition. At this moment, for instance, my daughter is urging me to bed “it’s your bedtime, mom”. My beautiful, intelligent, full of light, immensely frustrating at times daughter is telling me it’s time for bed.

We had a good day today, though we are missing my husband and son. We’re in the process of moving to the Boston area. My husband, Andy, has been there since October and my son, Brennan, just left to finish the school year there with his dad. We were thinking it would be good for him to make some friends before summer break. We have good friends there already, thankfully. They are making the move much easier. My son was welcomed with banners and a pizza party with neighborhood boys his age. He had his evaluation skate for the hockey team tonight and that went well. We are so excited for him, but we miss him so much. I have the door to his room closed so my heart doesn’t break when I walk by. In spite of missing them so much, Ali and I did have a good day.

We started off a little late after sleeping in, which was so nice. Then we picked up the house (easier with just the two of us) and went out to lunch. There is the greatest cafe downtown called Mama Bear’s Cafe. I had the best sandwich I have had in my ENTIRE life. I think it was called the Missy. It had provolone and prosciutto and tomato and spinach and the bread was amazing. Can you tell I’m pretty motivated by food??  Ali loved her sandwich, too. Tofu, I think. And we had the yummiest coffees! Great “feel good” food on a snowy day. It was nice to sit and talk to my almost adult daughter about grown up stuff. Last night we were up late playing music for each other from our iTunes libraries. That was interesting. It’s amazing how much alike we  are in so many ways.

After lunch we came home and I dinked around with the garage door openers. One remote opener wasn’t working , so I bought a universal opener. Damn if those simple instructions weren’t completely complicated. Somehow, while trying to program the universal, I must have reset the opener I had and it started working again. The universal is getting returned tomorrow. Of course, all of my efforts were being managed by Ali. Rather, she was telling me to get down from the ladder so I wouldn’t get hurt. Garage door fixed, we headed to the movies.

I had already seen New Moon, but Ali has only been back from exchange studies in Uruguay for a month so that’s the one she wanted to see. I didn’t mind seeing it again-it wasn’t so bad. We critiqued it and compared it to the first movie, Twilight. We’ve read all the books, yes I admit it. They were like a dumb sitcom you just can’t stop watching. Mindless entertainment, but entertaining nonetheless. Ali feels the same. She’s not one of these girls who is wrapped up in the vampire thing, picking teams and all that. She’s a Harry Potter nut. In fact, she wanted to make a “Team Potter” shirt to wear to New Moon. For all of you who don’t know, there are girls wearing shirts with “Team Edward” (the vamp) or “Team Jacob” (the werewolf) and others, I suppose. I told Ali I wouldn’t go with her if she wore that shirt. I still have some say.

Then off to the grocery store, where we worked together to “save” 40 bucks using our Kroger card, came home, fed the dogs and sat down to watch another movie. This one was torture! Best in Show was not the best in show as far as we were concerned. Unlike the sitcom you can’t stop watching, this was like a train wreck we couldn’t stop watching. There were some funny parts, but we could have picked a better movie to watch. Even so, today was a day during which I thoroughly enjoyed my daughter’s company. You know when you feel so happy it actually feels like your heart swells a little bit? That’s how I feel when I think about how much fun it is to spend time with my baby girl. She’s become a beautiful woman and I am looking forward to so many more days like today.

I am grateful for my blessings. I am grateful for the knowledge I have about my health. I am grateful that this knowledge might keep my daughter safe and healthy that we might have a great many days like today. With that, I will obey my daughter and go to bed. Good night.

This photo was taken by Jennifer Dery of Jona Photography

 

//

I don’t recall the flight home at all. I don’t even remember my husband picking me up at the airport, or the drive home. I have a very poor memory anyway, but these memories had no chance with the pain medicine I was on. I do remember being immensely relieved and enormously happy too be home with my husband and kids. I missed them so much. They were wonderful at taking care of me. My kids, Ali and Brennan were always asking if I needed anything. They helped me get in and out of the couch (yes the recliner was my home yet again). My husband was so much better than I could have hoped for. He always has been at everything, even when I’m hard on him and not so nice. He’s always making me feel like everything is going to be okay. So, he continued what he always does and made me as comfortable as possible. The living room was my bedroom, yet again. I had everything I needed and I was seriously doted on. I’m surprised they didn’t go so far as to give me a little silver bell with which to summon my attendants. Seriously, though, I am a very lucky woman to have the support I do. I love my family.

Once home, I settled in to begin the long process of healing, which continues to this day. I had the one drain in my abdomen, which I emptied every night. As soon as the drainage decreased enough, I could pull it out. It wasn’t too long before I was able to remove it. I did it myself at home-completely painless-with the permission of my surgeon. I was free! No more “things” connected or coming out of me. Ahhhhh. However, I did wear a post surgical compression garment, I’m actually still wearing them to this day. They’re awful, but a blessing a the same time. Sometimes I feel like I’m being suffocated, yet they compress my body and keep the swelling down. I’m more comfortable, in terms of swelling, when I wear them. But there are times when I need a break. The garments go from my torso, just below my breasts, to just above my knee. They’re like shorts that go up to my breasts and boy do they compress the tissue. Hah, they’ll be useful even when I’m healed completely, particularly under jeans to hide the ever present jean inducing muffin top.

Not long after I came home I had a setback with my abdominal incision. It began to open on the left side. I went to the emergency room to have it looked at. It never got infected, but it opened in the oddest way. I had about a 3 inch long area that just came apart. I to go to the wound clinic several times each week to change the dressing and packing of the wound. As that opening healed a new one to the right of it would open up. It was so strange. I think it’s because there was too much tension at the incision site. I was almost as if the tissue between the sutures gave way and stretched apart. So it continued until October, when I went in for my nipple reconstruction and scar revision. There was one last small opening remaining when I went in for surgery, but the revision took care of it. Having an open would takes a lot out of you, even if it’s not too painful. It’s worrisome, to say the least. All the horrible infections that can set in were always on my mind, especially since I come into contact with any number of nasty infections every day at work. Having an open wound is also sort of demoralizing. I felt even less than myself. I had strange flaps that were shaped like breasts, but had no nipple. Okay, to be honest I didn’t really miss the nipple thing. I never had to worry about them showing through clothing. The open wound just added to my feeling “off”. The surgeons aren’t sure why it opened the way it did, but I’m sticking to my theory. There never was an infection, thank God.

I gradually got my strength back and was able to do basic, normal activities. I still lacked strength and a little activity took a lot out of me, but I was making progress. The surgery was in the first week of May and I ended up back at work by the end of July. I wasn’t the same. I was slower, maybe I even cared less about what I was doing. I was emotionally tapped out. It started to get a little bit better, but I was still changing the dressings in my abdomen daily.  Sometimes, I would have a friend do it at work and sometimes I would go to the clinic. Quite a few people knew what I had been through, and why. I think the majority of people who found out just thought I was either overreacting or having some cosmetic work done. Most people don’t understand, with the exception of a very few. Ultimately they don’t matter, their opinions don’t matter. I did it for my family’s future. I want to grow old with my husband. I want to watch my son and daughter continue to grow, be there when they need me and celebrate their achievements. I want to see my grandkids get married. I want to see my great-grandchildren. The people who look at me at work with judgment in their eyes can “you know what”.

It’s now January. I’m back at work after the nipple reconstruction in October. I had a little setback right after the nipple reconstruction and had to be hospitalized for a possible infection. Again, I needed a blood transfusion and fresh frozen plasma. I’m now on a reduced hourly schedule, but I’m back at work. The nipple reconstruction had me worried for a bit. They were huge, and I mean enormous, after the surgery. All I could think was, “this is not gonna work, not what I had in mind”. i had teased a friend about the process of the reconstruction before I had the DIEP done. She asked how they would determine how to construct the nipple. I’m usually not good at joking with people, but I couldn’t resist. I, flat faced and matter of fact, told her I was going to pick them out of a catalog. I still laugh about her reaction today. It was hilarious. Well, if I could pick them out of a catalog, I wouldn’t have picked what I had. I was reassured that the swelling would go down quickly and it did. Aside from a small symmetry issue, which will be easily remedied, they’re actually okay. I have to massage the breasts everyday to decrease the firmness and help them heal in a way that looks most natural. I’m pretty happy with the way they turned out overall. I only have the tattooing of the areola left. It amazes me what science can accomplish. There was a time when I felt so depressed after showering at the gym (after doing what minimal workout I was able to do). I was embarrassed to have anyone see my nippleless flaps and worried that it might freak someone out. I think if the ladies in the gym locker room were to see my breasts (I can actually refer to them as breasts without feeling weird about it now) from a short distance they would think they were completely, naturally mine-after the tattooing of course.

My cousin, Ben. He’s the most wonderful, sweet, loving, giving man. I consider him more of a brother. And his wife, Miki…truly a special person. They took care of me. I had instructions to sleep in a recliner and they made me as comfortable as possible. Miki even washed my hair! She giggled as I walked like Quasimoto, yeah I looked funny. I wasn’t allowed to stand up straight so I wouldn’t stretch the abdominal incision. I was twice as wide as before my surgery, walked like a hunchback, my feet were so swollen I couldn’t see any bones. I was a sight to behold. At one point, and this really freaked me out, I could feel the fluid in my feet jiggle when I took a step. Yuk! You could even see it wiggle like jello on the top of my feet. I had the 6 drains pinned to my clothing, but they weren’t easy to hide. When I showered, I pinned them all to a shoestring hung around my neck. It was insane-very surreal. I emptied the drains each night and I was praying the output would be low enough that they could be removed at my follow up appointment.

I spent the next 2 weeks in Ben and Miki’s recliner. You know, I should also mention that they were expecting their first child. I just missed my little Xander’s arrival. Though Miki was very pregnant and Ben was working so hard, they made me feel secure. I slept in the living room. Sometimes I went outside on the deck, but the mosquitoes were horrendous and I had enough to worry about without having to scratch places I couldn’t reach. Oh, but I longed for the feeling of the sun on my skin. I had my schedule of pills to take, pain pills, muscle relaxers, anti-inflammatories. I was comfy. I don’t remember pain at that point (I had enough meds), only the inconvenience of not being able to move well. I remember one morning I woke and didn’t want to wake Miki up. I was trying to reach a box of cereal or something. This was a box I normally could have reached without any effort at all. On this day, I kept my elbows tucked to my side so I knew I wouldn’t lift my arm, stood on my extreme (I do mean extreme) tippy toes and, with my finger tips nudging the box ever so slightly this way and that, I got it down. Triumph!! I had a lovely box of cereal and didn’t have to bother anyone to help me. My lovely Miki remained peacefully asleep.

The 2 weeks passed quickly. I was increasingly worried about my follow up appointment. I had the Doppler wires to be removed and six drains. Okay, I just remembered the pain I felt. It was from the drains in the flaps. Those suckers hurt! It wasn’t a deep pain, but every time I moved the tubing moved and the skin around it would burn and pull. That was pain and I wanted the drains out so bad. The thing that scared me was I kept remembering when I would have to pull drains on post surgical patients when I first became a nurse. It was always so painful for the patients. With those memories in my mind, I took a pain pill and Ben drove me to the doctor’s office. I knew I was goofy and loopy from the medication, but I didn’t care. I was wearing and enormous (it would be so cute if I were smaller) sundress and had all the drains pinned within the baggy area so no one would get freaked out by them. I was brought back to the room and I expressed my fears. They reassured me and as they were talking to me I realized they had already pulled one of the drains out. I felt nothing. Thank God. All worked up for nothing. The Doppler wires were the same way. The flaps were so numb I felt nothing but a tugging feeling when they came out. I’m still amazed at what science can do now and so grateful that both of my flaps “lived”. Had the bloodflow been compromised at any time they would have “died” and I would have had to start all over again with fat from my buttocks. Plenty to spare there, too, though. So, all but one drain was removed. That final drain, one from my abdomen, was pinned to my dress. I remember asking they physician assistant about a small area on the left side of my abdominal incision, that seemed different. I imagine, if I had sensation along the incision, it would have been tender. I was worried about infection or the wound opening up. I was reassured and given instructions to keep and eye on it and walk more hunched over. Really? So, that was just about it. I had been fitted with a surgical garment to wear all the time, then Ben and I headed home. When I left Ben, my Aunt Ginger came pick me up. We drove to Plano and I spent a couple of nights with her and my Uncle Ted before I was able to fly home to my family.

The flight was really uneventful, but I wasn’t sure I was going to be able to get on the plane. I had the super sexy compression stockings to wear on the airplane (the white socks that go all the way up the thigh) and I was ready to go. I was wearing my trusty large muumuu dress, but the stockings were still visible when I sat down. My aunt helped me get checked in and made sure I would have help getting on the plane. I must have looked like hell, though, because one of the airline employees didn’t want to let me on the plane without a letter from my doctor. I walked like Quasimodo, don’t forget. I looked exhausted (drugged), unkempt and uncomfortable. I’m not surprised the employee wanted proof that I had clearance to fly. It wouldn’t have been a big deal, except it was the weekend and no way to get a hold of my surgeon for this. My Aunt Ginger and I sat there and watched her get on the phone with someone. I hobbled, with my aunt’s help, to a different area and hid from anyone who might try to question my ability to fly. They must have figured it was okay because I made it through security and was headed home. I was going to see my family again, finally.

Before I continue where I left off, I’d like to wish everyone a very happy new year and all the best in the year to come. I have hope, lots of hope for my future. My family is healthy and happy. We’re planning a move to the Boston area and are looking forward to new beginnings. Andy and Brennan will be in Boston, while Ali and I remain until she graduates, but time will pass quickly and we’ll be together again soon. Just like my surgery, painful and challenging, this process of moving and being separated will lead to a new, promising life. I’m looking forward to 2010 and the new experiences it will bring. I’m looking forward to the healing my body will continue to do. I’m looking forward to getting back to the gym and being able do all that I used to do before. It’s going to be a good year.

Well, the approval for surgery was done and all the preliminary test results (EKG, cardiac stress test and lab-work) sent in. I got things ready for my leave of absence and the kids being taken care of while my husband was with me in Texas. We have great friends that have come through for us when we have really needed them. They’ve helped keep my family together in more ways than one and I don’t know how we can ever show how grateful we are. With everything taken care of, my husband and I drove from Michigan to Texas. We stopped to visit my beautiful Aunt Ginger (my dad’s sister) in Plano (outside of Dallas) on the way. We stayed for one night and then went on to Houston, where I was to have surgery. We stayed the night before with my cousin, Ben (my Aunt Jean’s son) in Houston and my husband stayed with him while I was in the hospital.

I had prepared as much as I could. I had the amazing women on the FORCE message boards who provided me with some of what to expect. The surgery took all day. We knew it would be about 10 hours, but it ended up being even longer. I bled a lot. The surgeon even came out to ask my husband if there was some medication I was taking that I may have forgotten to mention. There was none and I was still “oozing”.  When my bleeding was under control I was moved to the ICU. The ICU was not unexpected. With the DIEP, patients spend one night in ICU then move to the general medical floor for another few days. I had 6 drains, one in each side of my abdomen and 2 in each flap. I also had Doppler wires (truly wires) in each flap. They had hubs at the end to plug into a Doppler machine so the bloodflow to each flap could be monitored. When I woke in the ICU I wasn’t aware of my extra “equipment”. I knew my husband was there and I knew my hands were enormous. They were so swollen I couldn’t even see my knuckles. I had a lovely hospital water pitcher on my bedside table and there was a clock on the wall above the door. I remember nothing else until I was moved to the regular hospital room.

I must tell you that what I remember is vague and in bits and pieces. It’s like when you chop and onion, or something like it. My memories are like the pieces all thrown into the pan. Some of them are too mushy to remember at all, others are just right but it’s all in the wrong order. I don’t know how else to explain it. I recall being surprised at how large my room was. I saw my husband sitting far away on a couch by the window, smiling at me. There was a large bathroom-I could see in it with the door open-and a recliner type chair next to my bed. I remember being struck by how young by nurse was. She was kind, caring and competent. The nurses who care for the DIEP patients have additional training specific to this procedure. I was in good hands. Every hour, around the clock, the nurses had to come in to Doppler the flaps. They would come in and connect the wires to their doppler unit and wait for the sound of the bloodflow. I was always a little nervous until I heard the “woosh woosh” like a baby’s heartbeat on a fetal monitor. I didn’t quite have the same fondness for these flaps, but I was very relieved “ wooshing” sound. The flaps looked so strange, so foreign, and I couldn’t feel a thing. I just hoped they would somehow, someday, feel like my own breasts. The nurses were also very good at making me get up and move. That chair next to the bed was probably 3 feet away. Three feet seemed like a mile when they were making me move. It seemed impossible. Once I was in the chair I didn’t want to get back in the bed. It hurt so much to move. The kindness and caring the nursing staff showed was incredible. I was weak from the surgery and in pain. I had all those drains and wires and such difficulty moving, there was no way I could bathe myself. The nurses bathed me with the caring of a mother for a child. It wasn’t the bath itself, but the caring with which they did it. It wasn’t as if they HAD to. They really wanted to make me feel better. I felt immense gratitude. As a nurse, I only hope to give that same caring to my own patients. I also remember fading out because I had lost too much blood in surgery. I was eventually given a blood transfusion, but prior to that I was really weak. At one point, I was sitting in the chair and I guess I was starting to lose consciousness. I remember a nurse trying to get my attention by snapping her fingers in my face. That must have been right before the transfusion. I also have a recollection of trying to text my friends and family and dropping the phone because I was so out of it before the transfusion. Apparently, my texts to my friends and family were just gibberish, which they made fun of later. It was funny. Somehow, even though I was not completely coherent, I knew it was funny. It wasn’t long after I got the blood that I started to feel better. I was walking the halls and shortly afterward, I was discharged from the hospital. My husband had already left for Michigan. We hadn’t anticipated me being in the hospital so long and he had to get back to the kids. So, my cousin Ben picked me up and brought me home to stay with him for 2 weeks until my follow up appointment with the surgeon.

My insurance company and I went back and forth for some time. All the information I gave them was “insufficient”. I was, literally, speaking with my case manager several times each week and I still wasn’t able to make them realize I needed the DIEP. This whole thing was taking an emotional toll on me. I was terrified that the longer I waited the more chance I had of getting cancer. I was also worried about taking time off from work. Being on surgical leave was going to be an enormous financial strain on the family. The constant fight with the insurance company was only making things so much worse. I knew in my soul that I was making the right decision, but the longer this fight took, the more I questioned what I was doing.

I ended up going in front of a “hearing”. My husband, an attorney, came with me to make sure I didn’t lose my cool (I do that). The fact that he’s an attorney was beneficial, for obvious reasons. We went in front of this board of insurance people, or whatever you want to call them. There was a nurse, a doctor, and a whole lot of other insurance professionals. I had prepared for this, though. I’m a nurse and I knew how to interpret all the research studies I had armed myself with. Not only that, I used to be a police officer. That gave me a lot of skill that actually helped me with this, particularly investigating the research results and presenting the information in the hearing. I had plenty of experience testifying in court and I’m not intimidated easily. All of the research results I brought with me compared TRAM vs. the DIEP in terms of core strength. I had a letter from my neurosurgeon, stating he would strongly recommend against anything that would further compromise my core strength. At this point, my herniated discs are under control, but without the abdominal support I could be in serious trouble.

I sat in front of these people, looked them each in the eye and laid it out. I gave them copies of each research study I found, discussed the pertinent sections, which I had highlighted, and moved on. I explained the choices they left me with. I could do as they said and get the TRAM. If I did, I would likely end up on disability, lose my career as an emergency nurse, sue them and my kids could choose whichever college they would like to attend. On the other hand, if they denied covering the costs for the DIEP, I could choose to save my back and my career, end up with cancer because they denied a needed surgery, sue them and my kids could choose whichever college they would like to attend. I was very matter of fact at the beginning. They weren’t going to change their minds based on my emotions. I gave them the facts, strong and supported. I saved the emotional stuff for the end. I told them that I watched my father slowly lose the parts of life that made him happy, that made him who he was. I went to restaurants to get him what he felt he might be able to eat, only to watch him have to push it away because he couldn’t force himself to eat. I watched him take his last breath; the memory of it still makes me stop breathing and then crumpled in the corner, unable to fathom my life without my father in it. I told these people who make decisions based upon what’s in front of them in black and white, that I would do whatever was in my power to prevent my children from having to go through that pain. I stood up, thanked them for their time and walked out. My husband stayed to shake their hands. I couldn’t bring myself to do that. I know my face was red, I was tearful and I was pissed that I had to go through all of this to save my life. It was about a week later that I was told I had the approval for the DIEP in Texas.

I won! I felt relieved and frightened at the same time. This was it. I had achieved what I fought for, now I had to truly prepare myself for the emotional impact of losing my breasts. Yes, these were the breasts that were likely to bring serious illness, if not death, but they were me. Even though I had implants for 10 years, they were still me. I had sensation in every part of my breast. It was my body. Now I was headed for a surgery that would remove my breasts and replace them with breast shaped (hopefully) flaps that would have no feeling at all. I was afraid of what I would feel about my body, about myself. I’ve never had a very high self esteem, particularly related to my appearance. In fact, this is something I have lacked so profoundly it has impacted other parts of my life. What if I felt even worse about myself? I was truly terrified. Of course, the alternative was unacceptable. I wanted to live and I’ll be damned if I let any of my own selfish thoughts and fears bring pain to my kids. You know, it’s so easy for me to think “this body is just a shell for your soul, it’s not who you are”, but I’m so far from enlightenment that those thoughts only carry me so far. I get scared. And so it went: back and forth in my mind. Ultimately, I sort of closed my eyes and plugged my nose and jumped.

I was thinking today how much I have changed since my surgery. I used to enjoy going out and doing things with my friends. It’s the party season now and I’m not much for partying at all anymore. Yes, I feel self conscious, but it’s more about the weight I’ve gained that the boob thing. I’ve probably put on 50 pounds in the past year-not all due to the surgery but a good part of it is. This was a surgery that took away a lot of mobility for a significant period of time. Not my appetite. That didn’t go anywhere. So, that’s the combination that led to the weight, no mobility with the same amount of food intake. Ugh. That’s not the only reason I don’t really want to do anything, though. I don’t feel THAT bad about myself. I just can’t put my finger on the rest of it. At any rate, I don’t really care about work or seeing people. The only thing I care about is spending time with my family. That’s all I want to do. It does bother me that I’m not as dedicated to my job as I was before. I used to have a real interest in making my department better. Now, I just want to go home as soon as I punch in.  Maybe as I ease out of this and get further out from surgery I’ll get some of my other interests back.  I know I will, because I miss them. It’s not like I don’t give a shit about anything anymore. I actually miss the way I used to feel about stuff. So I know it’ll come back. I just have more adjusting to do. This is where I get to feeling sorry for myself and I have to shake it off. Just when I get kinda dumpy something will bring clarity to my dingy brain. Unfortunately, some of those things are very sad.

Just the other night my husband and I got a call from some friends. Our boy plays hockey and we’ve made some very good friends over the years. One of the hockey dads called to give us some sad news. Another parent, who we hadn’t seen in some time, passed away on Christmas Eve. When we met her a few years ago, she was in remission from breast cancer. We knew that it had come back and missed her at recent hockey games. Her husband said she had become so weak and didn’t want others to see her like that, so she couldn’t come to any games. We really did miss her and she was in our thoughts. Hearing of her death was like a punch in the stomach, but the air also felt different, more dense maybe. My husband and I looked at each other with shock on our faces. We talked about what we were doing on Christmas Eve, while a friend of ours was dying. We knew what the other was thinking. We were thinking about her little boys missing their mama and about how hard this holiday would be for them for the rest of their lives. We knew one other thing, I had made the right decision.

I saw a genetic counselor about what my diagnosis meant. I had an 87% chance of getting breast cancer. The ovarian cancer risk didn’t scare me as much because I had already had a complete hysterectomy while my mother was still alive. I had ovarian cysts, endometriosis, anemia and one doozy of a family history. So, out it came. I still have a higher chance of ovarian cancer even without the ovaries, but it is significantly less. There are other cancers linked to my mutation, as well. Cancers like pancreatic, colon and melanoma. These are things I learned from the genetic counselor. I told them I planned to have a double mastectomy, but was still learning about options. I remember the doctor telling me that I can’t just remove everything that can give me cancer. I looked at him dead in the face and said, “nope, but I can get rid of the shit I don’t need”.

A big reason I wanted to have the mastectomies and reconstruction was because I had breast implants above the muscle for 10 years. That, alone, made me very nervous. I couldn’t feel a damn thing on a self breast exam. And the mammograms? Forget about it. All you can see is this glowing white orb of implant and a sliver of normal breast tissue. Too hard to determine any abnormalities there. Well, I would be lying if I said I wasn’t worried about what my emotional response would be to the absence of my breasts. It was difficult for me to adjust to the implants I had. I actually regretted them almost the entire time I had them. It was strange to have something so unnatural as a part of my body. It had a huge effect on my self esteem. Hah, and here I had convinced myself I needed them to improve my self esteem. So, yes, I was worried about how I would feel when they were gone and replaced by whatever method of reconstruction I should choose. I kept telling myself “they’re just boobs” and there was a huge chance those boobs would be the cause of me getting seriously, if not terminally, ill.

The surgery part of whatever I choice I would make didn’t really scare me. The anesthesia is the only part that gets me worked up-making sure the person in charge of my airway is on the ball. But, the hysterectomy/oophorectomy surgery was cake. No big deal. The hot flashes afterward…definitely a pain in the ass. But, hey, no periods. No ovarian cancer. I can put up with the regular sweats, red face/chest/arms, night sweats where I get literally soaked then freeze, then sweat again. Ugh. My only real gripe about the flashes is I can’t control when they happen. Living in Michigan, one can imagine a hot flash would be welcome now and then. But then, when I’m all bundled up to ward off the cold outside I end up with the biggest hot flashes that make me want to just rip everything off and roll in the snow. So, hot flashes aside, the uterus and ovaries are out without much of a second thought. I knew I could handle the surgery part of this battle. I just didn’t want more than one or two surgeries.

The decision had been made, now I had to figure out how they would be reconstructed. I found a wonderful website (the link is here on the page), FORCE, Facing Our Risk of Cancer Empowered. It’s an incredible resource and I was able to talk to others on the message boards about every possible question I had. I went back and forth between several different procedures for a couple of reasons. In all my research about what I was facing, I learned there are so many options for reconstruction. I was sure I didn’t want implants again, which is one option that involves having tissue expanders that have to be filled every week or two to make them a little bigger. They add a small amount of saline to the expanders each time so the skin can accommodate the implants when ready. That meant two surgeries, months apart. I also learned about options that would use my own tissue to make new breasts (they call them flaps). Frankly, I had plenty of belly flesh from having children, I thought it would make a nice size breast, even if they were a little smaller-I wouldn’t care. They’re just boobs. This one could be done immediately-at the same time of the mastectomy, which would mean only one very long surgery. That’s what I wanted, one surgery and using my own tissue to make my new breasts. Then there was another issue. I have herniated discs in my back. The only procedure that’s done like that where I live is called the TRAM flap. With the TRAM, they actually remove muscle from the abdomen when the vessels are harvested to supply blood to the new breasts (flaps). It’s an old surgery that’s been done for years. There are advancements, but no one in my town has the ambition, or even cares enough, to learn about it. No one does anything but the TRAM. This procedure was out of the question because of my back injury. My back is really fine because my abdomen keeps it all in check. I have occasional flare ups and pulls, but it’s really not bad at all. I just don’t want it to get worse. I would likely end up disabled if I did anything to remove stomach muscle. No TRAM for me.

I also found the DIEP procedure. It’s very similar to the TRAM, but they don’t remove/displace any abdominal muscle when they harvest the vessels. They make a perforation in muscle, using microsurgery, and tunnel the vessels up to the new flaps. A general surgeon works to remove the breast tissue while the plastic surgeon works on the abdomen, harvesting and shaping the tissue that would become breasts. Then the plastic surgeon goes to work making sure the flaps are in place and have proper blood supply. She also works to attach nerve endings in the hope some sensation will return. This is the one I needed. I had other choices, too. Spare the nipples or get rid of them? Spare the skin or get rid of it all? I knew I wanted to spare the skin because I wanted to avoid the skin expanders. I found that the best thing for me would be to get rid of the nipples, because the ducts to the nipple also have estrogen-cancer risk. If I was going to do this I was going to get rid of every risk I could. So I found the surgery I thought would fit best for me. I wanted the DIEP, skin sparing, nipple eliminating.

I had the full support of my family. My daughter Ali (17), and son Brennan (12), both knew what was going on. We discussed the genetic issues with them and the possibility of them being tested when they turn 18. If they are positive, they would both be at a much higher risk of breast, pancreatic, melanoma, among other cancers. Brennan would be at a higher risk of prostate cancer and Ali at a higher risk of ovarian cancer, as well.  At this time, they both plan to be tested. My husband gave his complete support the entire time. Now, not being a “boob guy”, he really didn’t care about the reconstruction part of it. Honestly, even if he were a “boob guy”, I think he would have been just as supportive. He saw how cancer destroyed my father, what it did to my mother when she was sick and what it did to the family after they died. I was trying to dodge a bullet and we were scared.

The search for a surgeon was difficult. Being a new type of procedure, there are only a handful of surgeons in the states who are experienced with it. I saw the surgeons my insurance company told me to see, and made calls to some others. No one here does the DIEP. I found a surgeon in Michigan, about an hour’s drive away, and met with her. She was wonderful and very easy to talk to. She listened. My only concern was that she was new to the DIEP. I was hoping for someone who had done a lot of them. I found out that she had trained with someone in Texas, someone who was one of the pioneers of the DIEP. After speaking with her office in Texas and making a trip to meet her, I decided to have the surgery with her. My insurance company, however, was not on board. They wanted me to have the TRAM because local surgeons in my insurance network perform those frequently. In spite of my documentation about herniated discs and not being able to sacrifice any core strength, they still insisted I stay in network. Well, anyone who knows me knows I like a challenge (some would say I like a good fight). Either way, I got ready to go after them.

Above you see a beautiful, aged photo of my mother (on the right), my Aunt Jean (on the left) and my Uncle Bill (cute little guy in the middle). They represent the beginning of many things for me. The obvious: my mother and my birth. The not so obvious: my “way cool” wild uncle who showed us what fun was and my aunt, lovely and silly showed me how fun it was to laugh. I still remember her cracking up, very loudly, while watching MASH. She’s a riot, my aunt. She and my daughter (when she was around 3 or 4) used to laugh incessantly together. One look from one to the other would set them both off in hysterics again. We even had to separate them at times, for our own sanity. It was beautiful. My entire upbringing occurred between those beginnings and the next, the unwelcome beginning: the diagnosis of a mutation to the BRCA1 gene.

I loved my family, though like the majority of families, we had issues. I was never the innocent one, I will admit. But many problems were so much bigger than I even knew at the time. We all blew in and out of each other’s lives, depending on what was going on, or who was mad about what. I never saw enough of my extended family, with the exception of two of my awesome cousins. The same sort of situation applied to my father’s side of the family, but this is focused on my mom’s side-the BRCA1 side. As a result of the way we all drifted away, then back, then away, my mother never really knew much about her family medical history. She had made a decision to withdraw from her parents, for various reasons, and didn’t know anything about her own aunts and grandmother’s health and illnesses. It wasn’t until my mother was diagnosed with ovarian cancer in 2001, and my Aunt Jean had done some genealogy studies, that we realized there was a frighteningly significant family history of ovarian and breast cancer on her father’s side of the family. My grandfather’s two sisters and his mother had all died of either breast or ovarian cancer. If that wasn’t enough, his mother’s mother and HER two sisters were afflicted as well. With the exception of one aunt, they all died of breast or ovarian cancer. My mother and my aunt were the only females left in that line of family.

Let me give a little background on my experience with cancer. In 1996, I watched my father lose his battle to cancer, a 2 year war that eventually took my strong, bear hugging, “I can fix anything” father away as a man who couldn’t talk or open his eyes. He couldn’t move his body. He was only skin and bone, quite literally. My father fought the disease with grace and incredible fortitude. He played rugby my entire life and after his surgery, he taped his PEG tube (the tube by which he received nutrition after his stomach was removed) to his side and played the game that was one of his greatest enjoyments. Of course, he made me swear not to tell my mother. He struggled and hung on to every bit of independence until he could no longer move without assistance. I was a police officer at the time and actually caught him driving his old pickup truck, knowing he was on an incredible amount of morphine. I escorted him home and lectured him (though I regret that lecture now). That was the last time he drove. It makes me cry to this day. I had been a single mother for some time and my daughter was so close to my father. He would see her first thing in the morning and last thing at night. He came over every morning to see his “Little”, that’s what he called my baby girl who was 6 when he died. She lost a father figure when he died. She held me as I sobbed when his body was being removed. She told me he felt better now. My baby girl, so strong and beautiful. Losing my father was my first true devastation. He was my best friend and I needed him. I was 26 years old and pregnant with my second child, my son who would never be able to experience the love of his Tata. That was the first time I broke. When I say “break”, I mean I was so completely broken inside. My soul, my brain, my heart, my gut, all empty and numb, yet I felt pain that I had never imagined. Everything was disconnected. Nothing worked.

My mother had never loved another man. My father’s death took so much out of her. She poured everything into work and never ventured into a social life again. She shut many things out of her life and focused only on her children, grandchildren and clients-she was an attorney. Then, in 2001 she was diagnosed with advanced ovarian cancer. This terrified her, as well as the rest of us. She had been having stomach pain that she dealt with, ignoring my urging, and that of my brother, to go to the emergency room. See, she felt (quite accurately in most cases) that the quality of medical care in Yuma, Arizona was less than safe. I will say I had my son there with a wonderful midwife and a very good emergency room physician is the one who actually found my mother’s cancer when the pain was so bad she actually went in. It was found on ultrasound. I was in nursing school in Michigan and my husband picked me up from class. The kids were with him and I knew something was wrong. The irony is we had just watched “Wit” in class and it was the anniversary of my father’s death. I was already an emotional mess. I got in the car and my husband told me my mother was sick. I went home to be with her as soon as I could. I remember going with her to her first chemotherapy session, after her surgery. It was awful to see the fear on her face and feel it radiating from her. She was the strongest woman I have ever known, like an Amazon. She was tall, beautiful, intimidating and incredibly intelligent (just one of the characteristics that made her so intimidating). Here she was, looking at a room full of very sick people, waiting for poison to be injected into her. Thankfully, she and my father had similar spirits. They were so very strong. She made it through chemo and into remission. She went back to work and things were getting better. She almost made it 5 years when her cancer came back. She had a second surgery and round of chemo and made it into a second remission. Now she was different, somehow. Afraid. Emotionally unpredictable. Things got difficult, especially with me being so far away in Michigan. We worked hard at staying close. Her last visit here was the best visit we ever had. What was really strange is that my aunt’s ex-husband, my Uncle Dave, was coming through town and stopped for a visit while my mom was here. We hadn’t seen him for many years. My mom cooked up a storm and we had an incredible time. She and I went to an antique mall and found some great things for my house. We had so much fun. That was in October. On December 7, 2007 she was killed in a car accident. My brother was in the car with her and was, thankfully, physically uninjured. His injuries came from having to watch our mother die and not be able to do anything to stop it.

My mother’s death destroyed me. I, literally, did not come out of my room for a very long time. I was just, simply, absent. I felt the full spectrum of emotions. There was no balance and I couldn’t get a grip on which way was up. I was lost. I didn’t go back to work for 6 months. I tried after a month, but I was a mess. I had no business being at work. It took me so long just to get to where I could go anywhere and even longer until I actually wanted to go anywhere. When I finally started to come out of my fog, I decided to get the genetic testing done. My mother and I had talked about doing it before she died. She was going to be “mapped” and I would have the test after. We didn’t get it done in time, so I decided to go ahead and do it. At that same time, my aunt was diagnosed with breast cancer. It was a no brainer then. I visited my aunt when she had her surgery (lumpectomy) and saw my uncles and cousins at the same time. It was a bittersweet reunion of sorts. I discovered that my uncle has had several melanoma removed. Hmmmm, another red flag. That cancer is linked to the BRCA mutation, as well. When the testing was done, it was no surprise that I was positive for the BRCA1 mutation. I was told that I had almost 90% chance of getting breast cancer. It was no surprise, yet it was devastating news. I felt like I couldn’t breathe. So many thoughts raced through my brain, how would I fight this? What could I do? I had to prevent my own children from feeling the pain I felt when my parents were sick. I knew that I would get rid of my breasts I just wasn’t sure how to go about it. I refused to play a hide and seek game with cancer. Not me. Not ever.