Full Circle

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.

 

Re-reconstruction

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.

National Previvor Day

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.

Support Rocks!

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.

New Beginning

Ali and her buddies after graduation

Enjoying post graduate family time at Dusty’s Cellar

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.

Keepin’ on keepin’ on

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.

Just Breathe

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.

 

Meltdown

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!

Should be sleeping

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.

aaaggghhh!!

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.

Genetic Effects

Soccer team picture, 5 yrs old

Two blue ribbons in her first horse show

Even sleeping her eyes look so big

Silly face lollipop

First day of kindergarten

Ali chilling on the couch summer 08

My Mom with Ali at the park

My Dad with his “little”

This photo was taken by Jennifer Dery of Jona Photography

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.