192.8: Friday Five (The Truth Edition)

1.  Truth:  I thought that having a surgery date would relieve some of my anxiety and stress.  It didn't.  I had a full out anxiety attack, cried for an hour and then crashed asleep for 2 hours. 

2.  Truth:  I still wonder why I am doing this to myself.  I know.  I know! It needs to be done, right?  But why am I doing this to myself?

3.  Truth:  I had put the whole Cancer word out of my head, but one of he surgeons reminded me that if the area that is suspect (and started this whole process) is found to be cancerous, I'll be sent to an oncologist and likely some additional treatment.

4:  Truth:  Despite having Pete and my Mom and coworkers and friends far and wide, I still feel all alone.  I am in island of one lately and it's as if I'm searching the island frantically to find someone like me who I can talk to.

5:  Truth:  I want to run away.  I want to pretend this isn't my life any more.  I want to go back to April 17th where I was blissfully unaware of all this and the twists and turns my life has taken on.

190; What 'Cha Reading? What 'Cha Watching? What 'Cha listening to?

I'm a total list maker.  Pete laughs at me because I make a list a couple of weeks in advance of going on vacation.  Everything from clothes to electronics to snacks to jewelry.  And on more occasion than one it's saved me from having to buy lots of crap when I get to where I'm going. 

So I'm putting my list making into overdrive.  No matter that I don't have a surgery date yet.  I have lists of things to get accomplished before surgery, lists of things I need to buy, lists of food to make before and have on hand when I come home, lists of modifications I need to make to the house for afterwards.  And I think I even have a list of my lists.

Really.

I'm scheduled to be in the hospital for about 4 days if everything goes ok.  I'm guessing that I'm be mainly snoozing and watching some mindless TV.  But I'd like to bring my iphone and long charging cord so that I listen to music.  Pete has wonderful soothing music that he listens to and I'm hoping that it will drown out some of the hospital noise and help me relax.  What do you listen to when you're wanting to relax?

Once home, I'm told that I'm going to be sleeping and randomly up for the first 1-2 weeks.  So during this time I'd love to get some suggestions for reading and movie/TV watching.  I have about 6-7 books on my Nook that I'm interested in, but would love suggestions for more.  I love mystery/hard to figure out suspense thrillers.  I like true stories that are pulled from headlines and explain situations/times in more depth.  I have to say though, romance and chicklit just doesn't do it for me anymore.  I think I read way too many of those books and I can't get into them any longer.  Any good magazines I should check out?

Admittedly I am a total reality show junkie.  But when I look at the TiVO, I realize that we don't watch a whole lot of series/TV.  Sons of Anarchy, reruns of Law & Order SVO or Criminal Intent, some random cooking shows and that's it.  I watch some of the Real Housewives series but not all.  I got into the FX show The Americans this fall.  But sitcoms really haven't been our thing.  I did catch a few Mindy Project and The New Girl episodes that were funny.  Any suggestions for series to watch that I can catch from Netflix or Amazon?

Movies seem to be feast of famine for Pete and I.  We go through streaks of seeking movies every weekend and then for a long time we see nothing.  My last 3 movies are The Hobbit, StarTrek and I have no idea because it's been so long.  So any suggestions for movies from the last 6-9 months that I could get from Redbox or Netflix/Amazon?

After 2 weeks I'm gonig to start crocheting.  It's going to help with moving my arms/hands without biog exaggerated movements.  Anyone need a baby blanket?  LOL

190; Blogging and WIW

When people ask me what my blog is about, I tell them everything.  When I started in 2004 it was about dating and room mates and work.  Then it became about recipes for a while.  Then it was dating and moving into a house on my own.  Then it was getting married and family and friends.  Then it was about weight loss.  Now I'm adding in mastectomies and reconstruction.  It's a blog about my life.

Early on, the blog was private.  I did it to journal for myself and be able to go back and read what I was going through at a certain point in my life.  At some point, I was reading lots of public blogs and decided to make it public.  But I'm very sure that no one read it other than me, for a long time.

When I gathered so much support and motivation from other weight loss blogs I realized that I could impart some information to others.  I hoped that others could learn from what I went through, just like I learned from the ones before me.

But (and you knew this was coming, right?) you have to be aware of your audience when you do that.  Very aware.  There is a blogger who is currently getting lots of flack for how she posts and I cringe when I read the criticism.  When you start out blogging for yourself, and then get big and well known, you have to make sure that your voice changes a bit. 

In weight loss, someone who has 120 pounds to lose and loses 70 of it is very happy.  And the next person who has 40 pounds to lose and loses 20 of it is similarly happy.  But they're both in different places.  The woman who went from a size 24 to an 18 is happy with where she is at and may have no plans to lose further.  Just as the woman who was a 18 and is now a 10, or the 12 who is now a 4.  The size makes no difference, it's the progress and the focus needs to be on the progress and how to get there.  When it turns into a battle of sizes, people's feelings get hurt.  The change in voice and how you blog is slightly different, but can make a big difference.

So when you blog for others, keep your audience in mind.  And when you read blogs of others, remember that you can't compare your numbers with others, but you can compare your JOURNEY.

That said, go check out the new sponsor of the Weigh In Wednesday.  Check out the new bloggers and see who you can connect with and get inspired from or who you can inspire! 

190; Non Scale Victories

I'm back to posting that number in the title of my posts.  It's a good reminder of where I am.

Non scale victories.  They're important.  When I started losing weight, it was all about the numbers.  And by numbers, I mean the scale number.  After you've started losing weight and seeing results, it's all in that number on the scale.  But the longer you go the harder it is to get that scale to move.  That's when the non scale victories come into play.

A few that made me smile: 

• Running my first mile without stopping.
• Getting into regular sizes at the store.
• Drinking 125 ounces of water a day and not craving soda any longer.
• Having my towel fit all the way around my body.
• Being able to put my foot up on the dashboard in the car to tie my shoes and breathing at the same time.
• Choosing fruit over the dessert and stopping at one helping instead of going back for more.
• Seeing my weights in Body Pump double from when I started.

If you Google Non Scale Victories you'll see lots of blogs and articles about this.  It's important to realize that the scale isn't always where it's at.  For quite a while I wasn't losing any weight.  Yet I was exercising, watching what I ate and lifting weights.  It was clear that I had more muscle than when I started and I was proud of that, but the scale kept disappointing me.  Then Pete pointed out that I was likely losing fat and gaining muscle.  So even though the scale wasn't giving me changes, my body was really changing.

The thing that struck me in the last 24 hours was the NSV about the towel and the gym this morning.

For years, I've had the same towels.  And I'd have to wrap them around me so that the opening was at the side of my thigh and didn't show any private parts.  When I could stop and realize that I no longer had to be careful how I wrapped that towel because it more than covered me, I realized just how much I lost.  This morning, after not being at the gym steady for 2 months, I got on that treadmill.  50 minutes and 3.5 miles and 550 calories.  My body remembers the actions of running and how to do it so it wasn't a struggle to do it.  The muscle memory that I have is pretty cool!

So when you're thinking that you're not getting anywhere in the battle to get healthy, stop and examine other areas and ask yourself what NSVs have you reached?

There's More to Being Healthy

(191; 30 minutes of exercise...so far)

You're exercising and eating right and feeling better.  Yay!  But there is more to being healthy.  When was the last time you had a physical?  When was the last time you had a pap, mammogram, cholesterol checked or other regular testing?  If you're over 50 have you had a colonoscopy?

Yes, the running, weight lifting and eating better are great things.  And I'm not writing to diminish them in any way.  If you've changed these things, you've changed a big part of your life for the better.  But there is more to being healthy.  There is a reason that regular check ups/physicals are recommended.  Screening for high risk things like breast cancer, diabetes or other health issues keeps you healthier.  It catches things that need attention or that need further screening. 

I was reading articles on being healthy in general and ran across this statement:

"Obese women go less frequently for Pap tests than their thinner counterparts because of the prejudice they run into," says Joseph Majdan, MD, a cardiologist at Jefferson Medical College who has written about how he himself was stigmatized by fellow doctors before he lost 100 pounds. Research shows that obese women typically get fewer screenings for breast and colorectal cancer too. This finding is especially chilling given the fact that women with BMIs of 30-plus are more likely to die from certain cancers—endometrial, esophageal, and kidney, among them—according to a study of more than 1 million women in the United Kingdom.

It's from  this article on Fitbie. 

And do you know what?  It described me to a perfect "T".  I was that obese women who put off pap/gynecological testing.  I was that women who dreaded my mammograms.  I was the one to put things off longer that I should so that I didn't have to bare my body to anyone.  After all, when I went to the doctor about an issue in college, he was more questioning of my weight than the issue that I was there fore.  He dismissed it as something that could have been caused by my weight.  He made me ashamed instead of feeling like I was being helped. 

So, this is my call to you, and it's two-fold.  First, find a practitioner that you like and trust and develop a relationship with that medical professional.  More than just going in randomly for a virus here and there, sit down and talk about all your issues with that person and develop a health care plan.  Secondly, find out what you're at high risk for, what you need screening for and follow through.  You've done so good with weight and exercise, why not get the rest of your body in shape too?

I Did IT!

{191; 30 minutes on the treadmill!}

1.  I got my ass out of bed and ran today.  30 minutes on the treadmill.
2.  I am DEAD tired.  The kind of tired where I sat and stared at my garage door and why it wasn't closing when I realized that I was pressing the mute button on my radio, not the garage door opener button.
3.  I'm still watching the Jodi Arias Circus.  I hope someone like Ann Rule writes a book about her.  I'd love to read her story from someone else's perspective.
4.  Coffee.  It's awesome.
5.  Work. Uh, yeah.  Thankfully tomorrow is my Friday. 

Determination; I think I found it

{191, 0 exercise today}

Firstly, I attended a support group yesterday.  4 women plus 2 peer educators.  And although I'm so not a support group type of person, I enjoyed it.  I initially texted Pete and I was going to slip out, but ended up being there for 3 hours and didn't realize it.

Every one of us was in a different place, yet I felt like I could identify with each of them in some small piece of their journey.  One of them talked about feeling like she was crazy for making the choice to have surgery with no cancer (me too!).  One of them talked about having a strong family history (me too!).  One of them talked about not knowing what to do for reconstruction (me too!).  One of them talked about not being positive for the gene but having family history (me too!).  It was very encouraging and I'll keep going as they meet every 90 days.

I also realized how lucky I am to have the husband that I do.  One of the women talked about not having reconstruction at all.  She talked about having a beautiful tattoo done, much like this one.  When she started showing the photos to her fiance, he was shocked.  He was almost appalled that she wouldn't have breasts.  It's caused some issues for them.  Pete is the guy who says he supports me with any decision I make.  He watched his Mom die after not being aggressive and reminds me that nothing matters other than having me with him for a long time.  He's a keeper.

I met with the second plastic surgeon today.  And he reaffirmed what I believe that I should do as far as reconstruction.  I have a semi plan.

One thing that I discussed with all the surgeons was that I didn't want this life of healthiness to go away post surgery.  I wanted to resume my normal activities, including the gym as soon as I could.  He commented that I would fair better than most because of the exercising and the stronger core.  And I believe that I blushed.  I haven't been to the gym in 2 months.  But that has to change.  If I want the best outcome I need to spend the next 4-6 weeks preparing in every way possible, including the gym. 

So I made a pact with Pete.  He's going to support me by waking me up, even if I haven't slept very well.  I'll go to the gym, do my best and hopefully after a rough week of tiredness, I'll get back in that rhythm.  I'll be back in fighting mode.  I'll be me again.

It Hurts So Good

{191; 0 exercise today)

This weekend I nested.  I've been reading more and more about post surgery and the things that you can and can't do.  The more I do that, the more I see around the house that needs to be done so that I can truly relax and recuperate.

So I deep cleaned the whole 2nd floor.  It's less impressive if I tell you that my townhouse is only about 1100 sf.  So the 2nd floor is about 550 sf.  It has 2 bedrooms, a bathroom and a laundry closet.  I cleaned the closets and organized them.  I stripped the beds and washed all bedding.  I flipped the extra bed mattress and Pete and & took apart our Sleep Number and repositioned it and refilled it.  I dusted all the stuff in our room and cleaned off the desk in the extra room.  I vacuumed everything that was standing still, including the ceiling fans and dryer vents.  I scrubbed the shower and the bathroom floor that the toilet.  I also scrubbed and cleaned the bathroom on the main floor, postage stamp size that it is.

I also went grocery shopping and rand errands on Saturday.  Did some prep for food for the week. 

It was busy.  And by last night I could feel that soreness that comes with working out muscles that have sat for too long.  It occurred to me in the shower this morning that I miss that soreness.  I desperately want to get back to working out.  But again last night I didn't fall asleep until about 4am.  There is no good workout on 1 hour of sleep.  So I again slept in for 3 hours and headed to work.  I need to suck it up instead of just talking about it.

Tonight I'm headed to a support group hosted by FORCE.  I'm hoping to find some women who took some of the same steps that I did.  Someone who can make me feel like I'm not crazy for thinking about this surgery.  And I'm hoping I can talk to someone who had surgery with the doctors I'm meeting with or point me in the direction of another surgeon.  Support groups really aren't my thing, but I want to try it out.

Swirling Whirling Randomness

{191.0; 0 minutes of exercise}

This is going to be more of a free word association post.

Clearly I need to start working out.  My weight was down and now is back up.  I'm in a cycle of I can't sleep and therefore it's difficult to get up in the morning to work out.  Losing weight isn't easy and when you add other complications or issues in the difficulty is just magnified.  I'm exhausted in the mornings and afternoons but can't fall asleep.  I think it's the stress causing my body to be "ON" all the time and mentally going constantly.  By the afternoon I could sleep for a couple of hours.

I met with the geneticist yesterday with my Mom and Sister.  She calculated my risk of getting breast cancer to be 52%.  It didn't shock me, in fact, I thought it would be higher.  The new panel of genes that they can test for is very new.  And as such, they don't know a lot about the panel and what recommendations they would make if we tested positive for any of them.  If my Mom tested now, she would likely be part of the group of results who would be used to make recommendations in the future.  While testing or nor won't change my decision, my Mom really wants to know.  My Sister didn't think that she should test right now.  So we decided that if my Mom's insurance wouldn't pay for it that we would skip the test at this point and wait a year or two to see where the testing was at that time.

I have an appointment today with a plastic surgeon and one next Tuesday with another.  I'm nervous.  I believe that my decision to have this surgery is solidified by that 52%.  However, I am really unsure what type of reconstruction I want.  I think I'd feel better if I had an idea of what I wanted going into this.  But I have my notebook full of questions and hope I can get some direction.

Someone keeps calling our association about us playing out in the yard with our dog. (I told you this would be random)  We keep him on a line when he's out by himself and he can't get much further than about 2 feet off the patio to do his business.  When we're out with him, we run and play and chase in the yard.  People keep calling that he's off leash.  I'm now anxious that they're going to tell us to get rid of him or else.  The irony?  There is only one other neighbor who uses the yard we share.  One.  That one also has a dog that runs and plays and chases with ours.  The rest of the neighbors are NEVER EVER outside. 

AND, I am wearing white before Memorial Day.  Clearly this means that I am a rebel.

The Link Between Weight Loss and Cancer

{187.0; 0 minutes of exercise}

I spent half of my life overweight and obese.  I chose a path to get healthier and lose weight so that my future would be longer, more enjoyable and in general better.  Yet here I am, close to what I weighed in high school and I might have cancer.

I've been struggling with how to motivate myself to get back to the gym.  The problem is that I don't sleep well and getting up at 4:30am to head to the gym seems unreasonable.  The truth is that intellectually I know that when I exercise for 45-60 minutes a day, my day is better overall.  I eat less, I drink more water, I'm more energized and I sleep better.  I just need something to push me out of the cycle that I'm in, get me over the week long adjustment period to waking up early and do it.

I started reading about being a previvor, breast cancer, genetic testing, reconstruction...  I did it so that I was more knowledgeable and felt more in control of my life.  But then I started reading some statistics and some studies and I found my motivation.

Among women with early-stage breast cancer, some research has found that obese women have an increased breast cancer mortality risk as high as 33% compared to non-obese women.  Force Newsletter
 

Now I knew that being overweight was a risk factor for cancer.  And it still took me years to do anything about it, but I did.  Ironic that once I did lose weight, I had this mammogram and these cells.  Could it have been in my breast longer and because they were more full and dense, just not seen?  Who knows.  And while I can't change the past, I can change the future. 

Reading The Breast Reconstruction Guidebook by Kathy Steligo I've come across several references about weight and exercise.  Mostly she talks about studies and research that shows that women who are in better health and better shape come through the other side of their surgery with better outcomes.  Having less fat makes surgery easier.  Having better muscle tone leads to easier recovery.  Eating right and drinking water promotes good recovery. 

So what more motivation do I need?  Honestly, I need Pete to help me be accountable the first week.  To help me get out of bed at 4:30 and get to the gym.  To remind me that I need to do this. 

I also need to start posting about what I'm doing.  To be accountable to myself and make it public.  So if you don't see my stats at the top of the post, call me on it!

Have you read about Angelina Jolie ?  Sometimes I think the universe is talking to me and this is one of those times.

 

The Awkwardness of Talking About Being a Previvor

Previvor:  A previvor is a survivor of a predisposition to cancer. 

I found out from reading FORCE website that I am a Previvor.  Well, I could be a previvor or a cancer patient because although the surgeon doesn't think the cells are cancerous yet, she's not sure.  And she can't be sure unless I have at least a lumpectomy.  So for now I'm identifying myself as a previvor.

Mother's Day starts off the year as our first motorcycle club event.  An Ice Cream Social in a park.  We ride there, catch up with the members that we haven't seen all winter, eat some melty ice cream and spend time outside.  I look forward to it each year.

This year was different.  I chose to ride with Pete instead of on my own bike.  Our chapter purposely arrived early and had our chapter meeting.  From the first minute I told Pete that I didn't want to be there.  I was having an emotional day already, the lack of good sleep was getting to me and I felt like a fraud to be sitting there enjoying this when I have this big secret.

I've said it before, it's an awkward situation to have someone ask how you're doing and somehow transition that to I might have cancer and I'm having major surgery.  When someone asks you how you're doing, they expect you to say "good", "great!", "hanging in there" or something similar.  No one expects you to say that you might have cancer.  So how in the world do you transition to that?  There really is no good way.

Part of me wants people to know, but I also don't want it to be a major discussion each time I say something or dominate the conversation or event.  It's also a strange and hard to follow conversation when you say that you might have cancer, you have several risk factors and therefore you're having radical surgery.  The equation often times doesn't add up for people.  Who would consider having radical surgery to prevent cancer?  I've explained it several times to close friends and family members and I can see in their eyes that they don't understand it, even though they say that they do. 

So I went into this day cold (it was only in the 50's and windy), not wanting to be there and very emotional.  Pete (if I was thankful for him before, I am even more so now) pulled a couple of friends aside and told them what was happening.  I was so thankful for that.  I didn't have to blurt it out and they could express care and concern and ask me about it.  We ended up having dinner together and talked about it more.  One thing that is clear is that the people in my life might not totally understand, but they do care and love me.

1:30am Epiphany

Thursday night was another one of my "every other night no sleep" nights.  I fell asleep at about midnight only to wake up at 1:30 and be awake.  I laid in bed and Pete rolled over and asked me if I was ok.  Yep, just awake again.  Poor guy.  I told him to go back to sleep and laid there thinking that maybe I'd fall back asleep.

Then my mind started spinning it's web of "I should have done x,y,z." "I need to do x, y, z." "What if I...?"  "What about...?" "What will happen when...?"  At that point I knew that I wasn't getting back to sleep so I picked up my phone and started surfing, reading and playing card games. 

Then I had an epiphany.  If I used blogs to motivate me. support me and find answers for losing weight, why wasn't I using them to get answers for mastectomies, reconstruction, choices and genetic testing?  By this time I knew that I wasn't going to be able so sleep the rest of the night, but that was ok. 

I quickly found one blog that lead to more blogs that lead to other blogs.  And I can't believe that it took me so long to use this resource.  Dumb. 

One book that everyone kept recommending was: The Breast Reconstruction Guidebook by Kathy Steligo.  So I downloaded it to my Nook and started reading.  I'm about halfway done currently.  It's a straight forward book that deals with how a mastectomy works and the various issues surrounding reconstruction.  Everything from mastectomy scars, to types of reconstruction, to weekly planning before, to afterwards and even a chapter about how to address insurance issues.  I've been highlighting sections that I want to remember and taking notes in my notebook (the best of both worlds - new electronic technology AND old fashioned pen & paper!)

I slept better the rest of the weekend.  It still takes me until at midnight to fall asleep and I wake up several times, but I'm not wide awake all night.  I think the feeling of having more knowledge is empowering and allowing me to relax a bit more.

Friday Fives

1.  Mother's Day.  Where my family eats make your own shish-ka-bobs and eats for hours on end while talking, laughing and catching up. 

2.  Sunday, actual Mother's Day, I will be riding this:

and Pete will be riding this:

(minus the child) to the first motorcycle event of the summer.  Then I will be talking Pete into going for a long ride with me on the back of his bike.  I do my best thinking on the back of his bike and it makes me cry to think that I will miss several months of riding.

3.  I am going to try to talk Pete into surprising a certain 10 year old at school for lunch.  She will be ecstatic.

4.  I am determined to put my new running shoes to work this weekend.  Even if all I do is walk on the treadmill at the gym.  I need to feel my body working and sweating again.  It's time.

5.  I am still working on living in Grace.  It seems ever appropriate that I chose this word for 2013.  I need to sit in my positives and realize that I will live through the bad things with the support of those around me.

187; Ok Fine, I Weighed Myself Again

I'm 187.  But I don't feel it. 

I've been fighting insomnia all week.  That's never a good thing, for many reasons. 

One reason is that it seems to throw off my eating/drinking.  (I sound like an alcoholic...but I'm not.)  When my body is over tired, I tend to indulge things that I normally wouldn't.  I drink more coffee, less water.  I may have a shorty can of root beer because the carbonation feels soothing.  I eat chocolate because it perks me up.  I eat crappy deli salads for lunch instead of healthy veggies and protein.  And dinner seems to be a free for all.

There is science in this.  It's been shown that people who sleep less, generally eat worse and have a hard time losing weight.

Yesterday I stayed home from work.  It was my second night this week with no sleep and it produced a migraine.  About 8:30 I made myself 1 egg/1 egg white scrambled eggs with an ounce of cheese.  It took me about 40 minutes to eat it.  I love eggs, but they seem to be going down harder and harder lately.  For lunch I had a couple of servings of Pop Chips with some fresh pineapple and strawberries.  No protein, but not crap either.  For dinner I had a piece of sourdough bread with a couple of ounces of cheese melted on it.  Again, not a great choice.

On days where I sleep well, I generally have my coffee in the morning with oatmeal or eggs.  Lunch is a fresh salad or veggies and leftover dinner protein.  And dinner is planned out with a protein, veg and little starch for me. 

I think what makes it harder is that when I don't sleep I don't feel like I have a good plan for the day.  Everything seems random and randomness doesn't promote good eating or even attempting to work out.  Planning out the day (somewhat) seems to promote better habits.  I know what's coming up and what I need to do and what I have to work with.  Randomness seems to mean that I make snap decisions that aren't always the best for me.

All this to say, that even though I'm down a pound form yesterday, it's not earned.  I think it's likely from stress and I don't want to lose weight that way.

Weigh in Wednesday

I'm casually dating the scale again.  So I'm participating in Weigh In Wednesday.  Hopefully doing so will keep me somewhat accountable to the scale, but only once a week.

  I've said this before, but I'll say it again.  I found some really inspiring blogs through this link up.  Take some time and read.  Find people who are where you are in your journey and connect by comments, email or whatever.  Just find someone who you can relate to and learn from or with.

I'm 188.  Precious 3 pounds away from losing 100 pounds.  At times I feel as though I'll never get there.  And other times (don't shoot me), I'm not worried about it.  It will come if it's supposed to, right?  Maybe I am worried about it?

My admission:  I haven't been to the gym in about 6 weeks.  First it was a migraine, then the whole neck/shoulder/back thing.  Then it was the biopsy and not wanting to jiggle my chest.  And honestly, now I just don't feel like it.  I can't seem to muster the energy to do so.  I want to.  I have new shoes that I haven't even tried out yet.

Baby steps.  Baby steps. 

I did starting taking all the vitamins and supplements again this week.  I think the Vitamin D and super B complex will help with some energy.  My goal is to be getting up and walking/jogging 3 days a week.  I've noticed that my weight isn't changing, but my thighs are bigger because my jeans are tight.  So I need to do something.  Anything.  3 days a week I can do, right?

I'm worried, ya'll (I know I'm from Minnesota, but ya'll seems to fit so well here).  I'm worried that I will have these mastectomies and reconstruction that will leave me sitting at home with nothing to do but eat bon bons, watching reality TV (are soap operas on anymore?) and by the end of the process 6-12 weeks later I'll have gained 50 pounds and lost 25 pounds of muscle.  I worked hard to get here and don't know how exercising fits into mastectomy surgery.  It's one of the things that keeps me from sleeping at night and makes me burst into tears in the Nutella aisle at Costco.

The Rollercoaster

Over the weekend I started Googling breast cancer, reconstruction and BreastNext.  Pete and I talked some about what recovery would look like for me and the tasks that would be left to him to complete.  And as always, he expressed readiness to be what I need him to be.

Then I went grocery shopping.  And cried. 

There are times that I am in control and that this is what I want and I'm happy that it's here and now for me to deal with before it's bad.  And there are times where the enormity of what I'm doing seems overwhelming and I lose it.  And soon after losing it I berate myself for doing so.  I should be happy that it's not turned into cancer yet.  I should be happy that I have more time and choices than those that are diagnosed.  But I somewhat feel like a fraud.  Like it's not that big of a deal and I just need to get over myself.  Then I'm back in control of myself and stop crying.

I'm trying to take control, to be proactive and understand all of this.  So I indulged my love for office supplies, notebooks, pens and organization.

I started a notebook.  A notebook that will follow me for the summer as I go through all of this.  So far I have a section of questions to ask the plastic surgeon, a list of questions for the geneticist, a section for my insurance contacts, a section for surgery prep and a section for recovery stuff.  I've filled some of the sections with questions that I got from BreastCancer.org and BreastReconstruction.org.  Both have communities to ask questions and get support and information.

I am obsessed.  This consumes me.  To the point that I never slept at all Sunday night.  My mind would spin with ideas and questions and what ifs.  Insomnia at it's worst.  I feel this intense need to clean my house form top to bottom, almost in a nesting kind of way.  I want Pete to call Sleep Number about getting a new pump for the bed.  I want to stockpile groceries and cook casseroles to freeze.  I'm compiling a list of books to read and want ideas of movies/TV shows to rent.  I haven't bought any more clothes because I don't know what I'll be able to wear or want to wear.  I feel like I am speeding ahead and spinning my wheels at the same time.

I am tired.

Sometimes The Universe Talks To Me

On Friday I was reading the Internet and came across an article about Kara DioGuardi.  She was the judge on American Idol a few years ago.  She was on two seasons and then abruptly quit.  People Magazine has an article about her and she's been on the Today Show talking about her journey with BRCA and her choices.

And it's times like this when I think that the universe, God, the sun/moon are talking to me.  Not directly, not in voices that I can hear.  Never that.  But in a way that silently says I need to do something.  In a gentle but impactful way that points to what needs to be done.  In an "all signs point to" kind of way.  Or maybe I see in the world what I want to see in order to feel like I've made/am making the best/right decision?

This comment from DioGuardi: 

I have absolutely no regrets because now I feel empowered in my body. I feel like I took back some of the fear, took back control of my life and hopefully enabled my child not to have to go through watching his mother in a chair hooked up to chemotherapy. I think that when it comes to your health, you have to look at it like, “Not only does this affect me, it affects everyone around me — my kid, my husband, my friends.” And if there’s a way to possibility reduce it, it’s kind of a no-brainer.
 

jumped out at me.  It's how I currently feel.  As though this is my choice and therefore under my power to steer myself and my body to my future.  And while there is a finality to not having natural breasts, it doesn't change the me on the inside.

Sometime last week after I talked to the surgeon, my Mom and I had a a conversation.  I think I understand her better and appreciate her more because of it.  She said some things that struck a cord in my brain.  One of them was that she was told by a doctor friend of hers to have a mastectomy when she was about my age to avoid cancer.  At the time she thought that it was too radical and didn't do it.  But she regrets that now.  She said that she wasn't worried about my sister and I while were in our 20s and 30s.  But as we each reached 40, she came to dread that one or both of us would be diagnosed with cancer. 

My Mom encouraged me to write down questions for the genetic counselor.  She encouraged me to write down questions to take when talking with a plastic surgeon.  So far I have an internal list; one not yet written down.  But one of the questions that looms over me, that makes me think long and hard.  Am I going far enough to prevent the cancers associated with BRCA and the 15 gene panel?  Do I need to go farther?  I feel like the universe, God and the sun/moon are telling me to make sure I do what I need to do.

Friday Fives; Thankful Edition

1.  I'm thankful for the weekend.  Stress and insomnia has prevented good sleeping all week. 

2.  I am thankful for the knowledge that my Mom has about breast cancer, the willingness to talk about it and her approach of letting me lead in how/when to share and ask for help.

3.  I am thankful for the support of my co workers and family.  I had pretty flowers on my desk all week from great coworkers and calls from my sister to offer to go see the surgeon with me.

4.  I am thankful for my dog.  Did you know that petting an animal reduces stress and actually brings down your heartbeat and your blood pressure?  I've certainly used that this week.

5.  I am thankful in every way for my husband.  I try to tell him all the time how much I love him and appreciate him and need him.  I hope I can accurately explain it so that he understands.

An Update and a Decision To Make

When I saw the surgeon Tuesday I left the office feeling much better.  After conversations with family and friends since then, I'm learning a lot and understanding better.

The surgeon explained that the cells from the biopsy were pre-cancerous cells.  Given my risk factors, it's likely that the cells would turn into cancer in the next several years.  She said this was the early warning bell from my body.  She also said that I have choices to make and none of them are wrong.  It feels extremely good to know that it's not cancer...yet.  It feels extremely good to feel like I am in control of my body and my choices.

I can decide to have a lumpectomy and continue with the MRI/mammograms.  I can decide to do nothing with it and continue with the screening tools.  I can choose to take Tamoxifen as a preventative drug.  I can choose to have a single or double mastectomy with reconstruction.  None of these are wrong and all would be covered by my insurance.

I am leaning toward the double mastectomy.  I know that it seems radical, but it reduces my chances of breast cancer from about 50-60% to 1-2%.  Given that the general population has a 1 in 8 chance of getting breast cancer, my risk would be lower, even with my family history.  And you know what?  I'm ok with it.  It's not that I'm not scared of the process and the healing and everything that goes with it.  But I'm ok with it for two reasons:  1.  This has been looming over my life for a long time and it's a relief to get it over with.  2.  It's my choice and I can take my time in making the decisions about when and where and how.

When we (and I'm going to say we form now on, because we all were there and it concerns us all), my Mom, my Sister and I, went to genetic counseling 4 years ago, I felt like the test result took the choice from me.  I grieved over the potential loss of my breasts and ovaries.  I felt like this is what identified me as a woman and losing them was so final that I'd no longer be a 'woman'.  In the time since then, I've come to realize that as long as I don't have cancer in me, the choice is mine and that my ovaries and breasts don't define me, I define me.  I say who I am and how I live and what I do.  The power of having a choice is great. 

So in a couple of weeks we meet with the genetic counselor again.  Then I meet with a couple of plastic surgeons to see what my choices are for reconstruction.  I'd love it if they could take my bat wing arm skin, my tummy pooch and the excess fat/skin on my thighs and do something with that.  But my guess is that isn't how it works. 

I need to see how the gastric band would effect any surgery.  And I need to see how it would effect being able to work out; run and lift weights.  I feel like a huge giant slug these last few weeks not working out and I want to get back at it.

WIW and The Things You Need to Know

 

  I'm still dating the scale.  So I don't have a weight for you.

I have an update on my visit with the surgeon and the cancerous cells in my breast, but I'm still working on it.

I would like to point you to The Militant Baker.  She's a little crass, but look past that and listen to what she says. 

We, as overweight people, are damn hard on ourselves.  And I think as the struggle to lose weight continues, we continue to be hard on ourselves.  That's why the little non scale victories are so important.  Recognize that you're not where you were, that you can do this and that you are a great person.