1 year, all clear

I had my official 1 year check up today.  All is clear! My MRI looked great (and was just fine despite my mid-MRI stomach issues.)  The nurse showed me what my own images look like. It was interesting compared to what I found for my previous post through a google image search.   Dr. Colette confirmed that I still have a piece of alloderm that was used to form my pocket that is taking longer for my body to take over completely.  This side feels like a super thick underwire part of a bra just under my skin.  This exactly what Dr. J told me at 6 months, but Dr. Colette just explains things so much better.  

Now post-mastectomy, Dr. Colette's recommendations are to keep up with the preventative measures to stay healthy--vitamins, diet, exercise, watch alcohol consumption, the usual.  For surveillance now, I need just need to have annual clinical breast exams like everyone else at a yearly physical.  I will also continue to see Dr. Colette once a year following an MRI to make sure I remain cancer free.  

The best part of the appointment was getting to see this.  Check me out!  I'm September! Pick up a copy of the 2013 Calendar of Hope for a $5 donation.  

A Year Later (My own words)

As I crossed off more days on the calendar moving closer to February 27th a this year, and even as I hit other smaller milestones earlier this year, I made sure that I looked upon these dates with a positive attitude. I don't look at it as though it's been a year since I lost my breasts; I think of it as being one year of being healthy.  It's been one full year since I changed my life and freed myself from the heavy burden of my genetics.

Mitch embraced this philosophy.  He arranged for the girls to go Grandparents and took me out to celebrate this new anniversary. We had a delicious multiple course dinner that included a dessert combination of ice cream, scotch, and bacon.  We reminisced a little and relaxed.  It was great!

In some ways in feels like I cannot believe it's been a year already, but then again it in other ways it feels like the day of surgery was soooooo long ago.  In the same, some memories of the day are crystal clear ingrained in my memory forever.  Other events even in the week following are still a mystery to me.  It's strange how the brain works.

I have no memory of leaving the girls that morning.  I don't know if we left while they were still sleeping or if I purposely tried to sneak out so that it wouldn't be a big deal, but thankfully that moment doesn't haunt me.  I remember how I cried as we dropped off Aila on the way to the hospital to have Adrienne, but nothing like that happened a year ago for this. 

I remember arriving at the hospital and being surprised that I had to check in at the outpatient surgery department.  For insurance reasons, apparently they cannot plan on a mastectomy being an overnight stay.  Instead, they anticipate 24 hour hospital stay and then the doctor must provide a reason for additional stay. I had all this stuff, my red bag of necessities and pillow that I had to cram into this little locker that they use for people with outpatient surgeries.  Then I was brought to this obscure little corner area that where I was forgotten.  But I'm not going to go back to that painful wait.

The strongest memory I have of the morning was when I finally moved to get the nuclear injections  before surgery.  They insisted that I be moved by hospital bed when at that point I felt perfectly capable of walking.  I thought that there was no way that my gigantic bed would fit through the doorways, but of course it did.  The man, while he looked like the cute Indian character from the show Heroes, was horribly awkward while he did the injections.  The pain was the sharpest, strongest shot pain I have ever experienced despite the useless numbing spray he would put on first. I had remained strong the entire morning, but it was at this point that I lost it.  I was alone in this room with intense pain and broke down.  I remember sobbing to the nurse that earlier today they offered me some anti anxiety drugs and I turned them down but I am really regretting that now and I'm sure it's too late now to do anything about that and...sob...sob...sob.  The kind nurse tried to comfort me and reconnected me with my family.

Finally from there, I only remember bits and pieces.  I find that I was totally disoriented as to where I was in the hospital.  I thought they moved me up several floors and around lots of corners, when Mitch says no, it was all on the same floor just around one turn.  I remember how nice the waiting area was in the second pre-op area in comparison to the area we were tucked in earlier in the day.  I remember clearly one specific nurse in this area who really knew his stuff and finally got things taken care of.  My sense of the elapsed time in this area was totally off in comparison to what it actually was according to Mitch.  We'll have to take his word for it because at this point I was already given drugs.  I remember that nurse saying that from this point on you're going to have amnesia right after I swallowed the little cup.  I remember saying good bye to my parents and the look that Mitch gave me, the love and worry behind that smile.  I remember Dr. Colette holding my  hand when we were in the operating room as the anesthesiologist starting working.

And then there is nothing. Nothing until the recovery room and even from there things are very patchy for the rest of the first week.  I am glad that I wrote things down or I would have no idea!

The first thing I remember was hearing things.  I heard this moaning. "Ughhhhh....ahhhhhghhh....arhhhhh"  I remember thinking "Oh no, is that me?"  Then I realized no, that it was coming from a few feet away.  As they kept saying "Sister, SISTER, you are OK" trying to calm her down.  Apparently she was a nun.  I remember asking my nurse, "Is she ok?" because the painful moaning was so bad.  Then I remember hearing the slide of the curtain being pulled closed as though that were going to solve the sound problems.  I cannot tell you a single thing about how this recovery area looked, every things was very dark. My memory is so blank that I don't even know if my eyes were open at this time.

The only other memories I have of being at the hospital are my mom feeding my ice-chips during the night, waking up at what was like 3:30 or 4 am the next day and feeling like I needed to brush my teeth. Everything else over the days is very vague other than the sense of fear when they said it was time to go home.  Even with all the preparing I had done I still felt like I couldn't possibly be ready to take care of myself at home.

Even that first week home, my memories are pretty patchy due to the pain meds, so if keep that in mind if you visited me and I said or did something strange :)

Just a few days after surgery, I insisted that I was going to go to Aila's dance recital.  They let me sneak in early, giving me preferential seating so that I wouldn't have to fight the masses when the doors opened.  I know that I was there, but I don't remember any of it.  Thankfully we have the pictures and videos.  We watched the video of it just the other night to get the girls excited for this year's recital.  There was a hilarious moment by another 3 year old that I had no idea even happened.  But at least I was there.

Now one year later, I am thankful.  First of all I am thankful that I had the opportunity to do this surgery. Just the medical discoveries and health care battles, I am lucky to have this opportunity. I have been so blessed that I've been supported by such amazing family and friends.  And most of all, with the uncertainty surrounding my suspicious lumps discovered in December, I am so thankful that I can say this is the one year anniversary of me taking control rather than it being the anniversary of when my life took a very different turn.  One year later, I am thankful and happy.

A year later

I wanted to put together a great post about my feelings one year later...but I've been knocked out by this cold and I plan to be in bed by 8:00.  So I am going to let someone else do the talking for me.  I found this fantastic writer, Lizzie Stark, and thoroughly enjoyed her post called "A Year Later".  She has a lot of unique views of her mastectomy that made me laugh.  I specifically like how she calls her reconstructed breast "zombie boobs."  I really connected with this post at the beginning, but as the she continues further I don't have the disdain for my reconstructed breasts the way that she does. Unlike Ms. Stark, I am very happy with the aesthetic results but I just love the way she describes some of the unique post mastectomy experiences like the bra salesady and moving around in a crowd.  Maybe later this week I'll be able to put down my own thoughts, enjoy this for now!

"A year ago today, I cut off my healthy breasts to reduce my astronomical chances of developing breast cancer. The months leading up to the operation were brutal, to say the least. It was the hardest thing I’ve ever done, but I’m really glad I did it.

I have the BRCA 1 genetic mutation, which carries with it a 40-85% lifetime chance of developing breast cancer. While breast cancer in the general population generally strikes after menopause, for BRCA 1 women, the age of diagnosis can be much younger. Many women in my family developed breast cancer in their 30s, but my mother holds the record for youngest diagnosis — she learned she had cancer just a few weeks before her 31st birthday.

I didn’t want to cut off my breasts, but it’s what I had to do to feel safe. While it’s amazing that science could pinpoint my risk of cancer, it didn’t leave me many options. My choices were to expose myself to an emotionally draining barrage of tests a couple times a year, tests that began coming back with assurances like, “that thing we found on your scan is probably not cancer,” tests that don’t prevent cancer, simply catch it early. After watching my mother struggle with cancer, I decided I couldn’t play chicken with my life like that. I could have taken estrogen blockers that would have reduced my risk as long as I took them. Of course, taking estrogen blockers means undergoing temporary menopause, and as a BRCA 1 carrier my lifetime risk of ovarian cancer is 40-60%, with most doctors recommending an oopherectomy after child-bearing is done. So I already was and still am facing early, surgical menopause. My final option was to take the breasts off entirely, permanently reducing my risk to less than 5 %. I chose certainty.

My new breasts are cosmetically appealing, or so I have been told by doctors and bra saleswomen, but I still miss my old ones. Because taking out the breast tissue cuts through nerves, I’ve lost a lot of skin sensation. This winter I noticed that my breasts can’t get cold, for example, because there is no feeling. Sometimes it’s awkward to slither past a stranger in a crowded room, only to realize later that my senseless boobs must have bumped against him or her. From time to time I get an itch I can’t scratch because there are no sensation receptors left in my skin. This permanent numbness, reminiscent of a dentist’s shot of Novocaine into an inappropriate body part is the worst thing about the surgery.

Without my breasts, my real breasts, I mean, I felt strangely incomplete, deformed, ugly. As if I were faking an identity I no longer had claim to. In response, I became excessively girly. Jeans left my wardrobe, to be replaced with a strict diet of leggings and dresses, preferably in funereal black. I never let anyone see me without makeup or in sweatpants. I felt dishonest about my new body, as if my personal appearance, my faked cleavage, was presenting a lie to the world that belied who I really was. I was pretending to be a normal, natural female, when in fact, I consisted of medical-grade silicone held into place by a donated collagen matrix (read: skin harvested from the backs of corpses and stripped of DNA).

While I was glad the surgery was over, the months that followed were dark, bleak ones for me as I wrestled with these emotions, emotions that I even felt a little guilty for having — I mean after all, it’s not like I had cancer or anything.

Still, the best thing about the surgery is that the threat of breast cancer no longer hangs over my head. It’s hard to overstate that, since I have no conscious memory of being without that worry. After all, my mom first developed cancer when I was 18 months old. In some ways, I share the fate of my mother and grandmother (and aunts, great-aunts, first cousins once removed) — I’m going to my grave without my real boobs — but I do feel I’ve dodged the bullet. I don’t have to have chemo. I won’t lose my hair. I won’t have to spend years living with the shattering uncertainty that the cancer might recur. And I’m so glad I don’t have to.

Want to read more about my zombie boobs?"  Lizzie Starks http://lizziestark.com/2011/03/04/a-year-later/

Once a puke-er, always a puke-er

Today I went for my (what seems to becoming a tradition) day after the Superbowl MRI.  Prior to my mastectomy, MRI was a much better surveillance method because mammography isn't as reliable on younger breast tissue.  Now after, it is the only available method (picture me doing a cheer about never having to have a mammogram again!!).  I will continue to have this scan annually.  They are looking to see that there is no cancer growth in the remaining skin.  Also because of my choice of reconstruction, they use this scan as a way of checking on my implants to make sure they are in good shape with no leaks or punctures.

You may recall my post last year about my breast MRI experience entitled "I'm a puker."  Well...I don't know why I thought it would be different.  I really had high hopes for this one.  I actually completely forgot that this was scheduled until I opened my calendar at 6:00 this morning.  I feel like this is a good sign though because if I can forget about it, it means that I'm not obsessively nervous about these appointments anymore.  I quickly added a pair of warm socks and a book to read in the waiting room to my bag figuring I was all set for the day.  As I was driving to work, I thought about it a little more and realized I didn't do the research that I wanted to since last time about the IV.  I figured, "Oh well, I'll just try to tough it out this time...I'll be fine." I did not want to puke this time; I wanted to bring something small to eat before the appointment. So at our meeting this afternoon, I grabbed a small deliciously gooey brownie and enjoyed it.

The MRI process began as normal.  I had no trouble getting the IV and I have no problem with the small space.  My music was cranked up and I was positioned very quickly and easily into the machine. The first scans were short ones...20 seconds, 1 minute, 2 minutes, 5 minutes.  Then they injected the dye.  Just like last time, it went like this:
1.  Dye injected
2.  Immediate metallic taste in my mouth
3.  The strange feeling like I just peed my pants (but I didn't)
4.  Then uncontrollable puking for ten seconds

Then it's all over and I need to try to lie still for another 7 1/2 minutes because this dye scan is of course the longest one at 8 minutes.  Those feelings come on so fast and so strong and no amount of self talk, breathing, or imagery can keep me from vomiting.  However, last time I didn't eat anything before the appointment.  This time, I did actually puke.  I felt really bad that I messed up their little table.  I'll feel worse when the doctor gets the images and says that I have to take them over because I moved too much.  So...lesson learned this year: Do not eat before an MRI.  Also, maybe next year I'll ask if I can bring my own music.


This is what a breast MRI image looks like.  This is not mine!

First post of 2013

I haven't posted in awhile, but that's good because things have calmed down quite a bit since last year at this time. It is hard to think back to all of the uncertainty that I was feeling just a year ago.  What's going on now, you wonder?  Just good things.

First off, I do plan on having a little bit of revision surgery, but we are waiting on the plastic surgeon to be able to get the newest machine.  The method of reconstruction I had is called "one-step direct to implant."  Theoretically it is supposed to get everything done in just one step as opposed to having to insert an expander under the muscle, stretch the muscle, then have a second step surgery to replace the expander with a permanent implant.  However, going directly to implant doesn't give the surgeon the opportunity to fine tune things later in the process the way they do with expanders.  With direct to implant, the surgeon has just one chance to put the implant in and hope that it's looks right in the long run.  Now, don't get me wrong, I am very happy to have done direct to implant method.  I am WAY too impatient to have gone through the expanding process and my results overall look very good.  However, alone standing in front of the mirror, I have things that bother me.  There are concave areas and ripples.  Because all of the breast tissue was scraped away from my skin, I am left with just thin skin in any area that doesn't have implant or muscle right under it.  So this skin just kind of falls in between my rib bones causing some concave areas.  A good way to picture it is by looking at your hand.  You can you can see the bones of your hand coming down from your knuckles through the thin skin on the top of it.  This is kind of like what I see when I'm looking at my chest in some areas.  I personally am not crazy about the ribs sticking out look.  This thin skin also causes a bit of rippling too as the muscle stretches over the implant.  So both of these things will be taken care of by using my own fat to fill in the concave areas and ripples.  I will have a small amount of fat removed from a donor site.  Unfortunately it won't be enough removal to really notice any benefit at the donor site--just like a tablespoon worth of it will be removed.  We are waiting so that Dr. J. can use the newest machine available to do something to this special with fat (I am not quite sure what exactly) that will make it more likely to stick.  Then the fat will be injected into those unsightly areas.

So this leaves me waiting to hear from Dr. J's office to find out exactly when this can be done.  It will either be very soon (they expected it after the first of the year) or after May 19th. Why May 19th?  Because Mitch and I officially committed to running the Cellcom Green Bay 1/2 Marathon.  Even though Dr. J. assures me it is going to be an easy surgery with a very quick recovery time, I am not willing to let it throw off my training. I'm warning those around me already that I am probably going to be a bit crazy training for it.  I've only ever done a VERY slow 9 miles in my running career and I am only currently up to 7 miles.  I did however have my first long run today in which I actually had negative splits, exciting step for me!  I'm thinking about doing the "Run for a Reason" to raise some money for Unity Hospice through this.  I will post more about that when we get it figured out.

I have had some problems in the last few months with pain again. This wasn't something that I've had for a long time, so it was pretty strange and had me worried for awhile.  It varies from sharp shooting pains to aching and soreness all day long.  There was no sign of infection, no obvious reason for a bit of swelling that came with it.  So as of now we think that I just did a bit too much working out.  It's possible that my nerves are beginning to reconnect and I am starting to get feeling back.  Suddenly I am now feeling the push ups and other things that I had felt ok doing for so long.  Unfortunately, I don't usually realize that I've done too much until the next day when I'm feeling the crazy pain whenever I move.  So I'm now just a lot more careful about what I do working out and with other lifting things around the house and at work.  I don't want to have one breast swollen again any time soon especially since I'm waiting to hear from Dr. J and wouldn't want have to delay revision because of it.  I look at this as a good thing because it means that I have an excuse not to  shovel snow anytime soon, workouts are more enjoyable with out push ups, and the girls are completely capable of getting in and out of the car by themselves without me lifting them in. Ironically, after a full month push up free I have less rippling than I have had for a long time.

I also am closer to making a decision about the surgery to reduce risks for ovarian cancer.  I met with another specialist to get another opinion and hear more options.  I really liked the office, the staff, and doctor but it didn't make the decision making process any easier.  I think that I will continue surveillance this spring and make a final decision by this summer which route to take.

So welcome to 2013 and all of the good things that it will bring!

Guest Blog

Check out this link http://donotworryaboutme.blogspot.com/2012/11/guest-blogger-1.html#comment-form for a guest blog I wrote for a friend about to accomplish two amazing goals of running a half marathon and having her prophylactic bilateral mastectomy. 

Finally

Remember that blood test I was complaining about back in July saying I was so frustrated with hospitals?  I finally was able to get it done this week.  That's over 2 months.  Now it's not like I was on the phone fighting this one out constantly.  I would remember to call on a weekend, but you can't just call and leave a message because on weekends you either need to page the doctor for an emergency or wait until Monday.  Well the chances of me remembering to call on Monday were very slim. Then when I did remember, I didn't remember to call until after 4:00.  I would leave a message and the nurse wouldn't have a chance to call me back until the next day.  So then I'd get the message the next day and think that I could call back on a break or lunch at work, but that doesn't happen because I have 6,000 other things to do during that short time.   So I would forget to call back or call again too late or on a weekend.  It's just a crazy cycle.

Book Review: That's Why I'm Here

There's another book that I read this summer that I feel compelled to tell others about: That's Why I'm Here: The Chris and Stefanie Spielman Story.

Mitch recommended we get this book; something he caught on espn.com with some substance.  We read it together (with simultaneous book marks not literally together aloud).  It was a good combination of football for Mitch and a beautiful love story for me. Stefanie is such an example of strength, hope, determination, and above all faith.  Chris, while incredibly dedicated to football, was able to learn through Stefanie what the important things in life really are.  It was definitely sad as Stefanie eventually lost her battle, but the inspiring moments made the sad worthwhile.  I am amazed by the courage it took to write this book.  Chris shares openly about the best and worst of times and how their family was able to handle it all with faith. One of my favorite parts was the forward written by their daughter Madison--such beautiful words.  I'd highly recommend everyone checks out this inspirational story!

 

6 months!

It was exactly 6 months ago today that I had surgery.  It feels like a lifetime ago!  I had a check with Dr. J today.  I had noticed a hard spot on my side that I was a little concerned about.  It felt like maybe a bit of scar tissue, which in this case isn't a good thing.  He decided that it is just a couple layers of the alloderm that were overlapping and it's taking longer for my cells to take over this thicker piece.  (In case you forgot, alloderm is the cadaver tissue that was used to create a patch for my muscle.)  He also agreed that we need to do a little fat grafting to eliminate some ripples and divots.  He made it sound like it'll be an easy procedure--just an hour surgery and a few days of light duty. Hopefully I can schedule it over a short break from school in October or November.  I have a little research to do though before I completely understand and agree to this "easy procedure." 

that's my great doctor!!

http://www.greenbaypressgazette.com/article/20120802/GPG0101/308020121/Breast-cancer-survivors-ride-Zippin-Pippin