Thursday, September 29, 2011

Doing Something

With October just a couple days away, I know everyone has probably been blasted with emails and links for various breast cancer awareness events.  And, if you've been reading my blog then you know Pretty Pink Packages is participating in the American Cancer Society's Making Strides for Breast Cancer .  I chose this event because I was so impressed by the lovely volunteers at Mayo.

The 8th floor of the Davis building at Mayo (I call it the Penthouse because it's the very top floor) is the Hematology/Oncology floor.  The American Cancer Society has a small room at one end of the lobby where patients can get various forms of help - free.  From wigs, scarfs, to the use of their computers and library.  I was fortunate enough to have a variety of those items gifted to me so I never used that service.  But each time I went for my chemo treatment a very sweet volunteer would bring me an array of food and snacks all of which were provided for the patients by the American Cancer Society.

I have to admit, I don't always know what is going on in my own community, but our area is already in full swing.  A couple of weeks ago they had their first annual Bosom Buddy Auction downtown, and there are a few other events going on or upcoming.  I thought I would share a few links for those of you in my area.

I am sure there could be more happening that I am not aware of.  Feel free to share events.  The more people who know, the better the event.

I also wanted to share a few links to some fun fashion sites, along with a couple others, that are participating in raising funds for Breast Cancer. I know here too, there are probably more, but these are the ones that I thought had good links to helpful information about breast cancer.

Tuesday, September 27, 2011

Getting Ready for Surgery

There are times in life when, no matter how well you have prepared, you still aren’t ready for what lies ahead.  Once I made my decision to have a double mastectomy, my surgeon discussed how things would play out.  I went home researched a little more, just to make sure I hadn’t missed some key piece of information, and prayed really hard. 

At this point I remember things were still a blur to me.
  I was going so quickly between tests and meeting with my doctors, that when it was time to get prepped, I realized nothing had prepared me for the reality of my surgery.  Up to this point I had walked many halls alone to meet my nurses or technicians.  But the afternoon before my surgery I had to have a particular dye injected into my breast tissue that would circulate through my lymph nodes and thus help indicate any cancer present there.  I wasn’t very familiar with this procedure.  I can still remember the sweet little woman waiting for me at the door at the end, of what seemed to be, a very long hallway.  With each step my anxiety grew.  By the time I reached the door, my whole body was trembling, and I tried hard to hold back the tears.

There we were, two people in a large, sterile room, and one huge machine.
  She walked me through the procedure and I put in my earbuds, hoping I had something on my ipod that would settle my nerves. Sadly, it was to no avail.  I turned it off and my mind drifted in and out as I listened to the noise of the machine.  I’m not sure what I was thinking, but I know I felt very alone.  I was probably praying.  As tears began to fill my eyes I felt a warm calm come over me and I heard the voice of my sweet technician talking to me. I have no idea what she said, but I was thankful for her kindness. 
The next morning I arrived very early to the hospital, checked in and waited to be called.  Once I was called back, I was given the latest fashion in surgical attire straight down to special socks – 2 kinds.  My husband and I sat as I met my new nurse.  She was assigned to me and only me.  Then in came my surgeon and her team.  I had never seen my surgeon in scrubs and I must say she looked very young to me (or I was feeling old, not sure which). I think I remember going into the operating room because I slightly remember seeing their faces around me, and I remember the very cold room.  Luckily I don’t recall a thing after that.  I woke up at some point several hours later in tight bandages with several tubes attached to me.  I remember being relieved it was over and somewhat scared of what was underneath all that dressing.

Monday, September 26, 2011

Say Cheese!

I have never been one who likes to be in front of the camera, and I am not so good behind it either.  My husband on the other hand is pretty good, so over the years he has taken quite a few I really like.  Sadly though, as my son has gotten older we have not taken so many.  Before my surgery, or in my mind “life as I knew it”, I wanted some family photos.

I’m not sure why this was so important to me, but it was.  I guess in my mind I knew I was about to change and I wanted to have something to hold onto that would remind me of what I was like before all of this crazy breast cancer. My sister-in-law was kind enough to come our way and take some beautiful photos – she actually does photography.  The pictures turned out perfect.  I was so happy!

I don’t have a lot of pictures of me during all of my cancer treatments, which I know some people like to.  But for me, I didn’t want my family to remember me that way (if, Heaven forbid, something were to happen).  I also found it hard to see myself that way – I didn’t really recognize myself, and it made me feel like I had lost myself to the cancer.

Today, well, I don’t have many pictures of me at this stage either.  (A few good one’s from my niece’s wedding.) Still don’t feel I look like myself just yet, but it gives me something to work towards.  Not to mention all the old photos I never liked so much are looking a lot better! 

Here is a picture my sister-in-law took the weekend before my surgery - June 2010.

Friday, September 23, 2011

Going Pink For Breast Cancer Awareness

Next month is Breast Cancer Awareness month.
Enjoy the video, get inspired, and get involved.  
Pretty Pink Packages is!

Thursday, September 22, 2011

He's Probably Right

From time to time I will have my husband read over my blog posts to make sure I haven’t misspelled a word or such.  His comments always make me giggle.  Like yesterday’s post – he seemed to think the analogy of peeling an onion with some tears was more appropriate than unwrapping a pretty package. He’s probably right. And he has often teased me, saying that I chickened out on sharing my personal experience with you by having you read about it somewhere else.  He’s probably right there too.

But the thing is this; some parts are hard.  Hard to share, hard to read, and hard to deal with if you are in the same boat.  The biggest reason I didn’t care for blogs when I was at the start of my breast cancer is that they scared me.  Plain and simple!  I didn’t want to hear how awful something was that I had to have done in 2 days or next week.  Nor did I want to think it was a walk in the park and then get blindsided. 

I want you to feel like you have the information you need to ask the right questions and make good choices .  I do not in any way want to add anxiety to your situation (there is certainly enough of that already).  Questions are always welcome, and I am happy to share my personal experiences in detail with anyone who really wants to know, but it most likely will not be on my blog.

Wednesday, September 21, 2011

Options, Options, No Options

I’ve never considered myself as indecisive, but sometimes I get tired of making decisions.  At this point I can honestly say I have never made so many decisions in my life, and that my life depended on, as I have during my breast cancer.  One of the first decisions I had to make was what type of breast surgery was right for me.

You might think this was pretty cut and dry, but that really isn’t the case. Today women have so many more options than in previous years.  There are; Lumpectomy, Partial or Segmental Mastectomy or Quadrantectomy, Total Mastectomy, Modified Radical Mastectomy, and Radical Mastectomy. And that’s not all, there are also Skin Sparing Mastectomy or Nipple Sparing Mastectomy with immediate reconstruction.  Even if you do not have cancer in both breasts, you have to decide if you are going to have a bilateral mastectomy or not. Are you BRCA1 or BRCA2 positive?

As I moved from one test to another it was like unwrapping a pretty package, each layer revealed something new.  And with each revelation, I had a tougher decision to make.  I can tell you that I read more, researched more, and prayed more during this time, than any other.  It was really hard

Looking at images of the surgeries was scary, but it brought some hope to me as well.  I knew I would have to have a mastectomy, so I began to research immediate reconstruction. At this point my local surgeon told us I was too young, and as my case was becoming more difficult he felt I needed to go somewhere else for my care.  This was an answer to our prayers. We really wanted a second opinion.  Not because we didn’t like what we were hearing, but because this was serious and we wanted to make sure we were making the right decision.  Through the help of my surgeon and local oncologist I was able to get into the Mayo Clinic in Jacksonville, Florida. 

Here my pretty pink package continued to unwrap.  Really I should have said that if you are diagnosed early on, you have a lot of options available to you. In my case, many of the options, well, weren’t available anymore.  I had to have a bilateral Modified Radical Mastectomy.  I couldn’t have immediate reconstruction because the size of my tumor was too large and I would need radiation.  Not that this was my first choice, but it was the only choice I could make and feel good about.

Here are a few links that share a brief explanation on the various types of breast cancer surgeries:

Tuesday, September 20, 2011

Just For You

Besides all of the life changes that can occur during the process of being diagnosed with breast cancer to the end of your treatments, your body goes through a great deal of changes as well.  Most people think about two things; losing your hair and being sick.  Those are true.  I did lose my hair, and I was pretty sick. But, what isn’t mentioned so much is the possibility of gaining weight. 

I think in all my reading, I only came across weight gain as a side effect of chemo a few times.  I told my husband, “Oh great, that’ll be me”.  Sure enough I gained 30ish lbs.  I’m pretty sure I put 10 lbs on before I even started chemo.  (I tend to be a stress eater.)  Once I started my chemo, I put on an additional 20 lbs. So here I am seven months after completing my treatments and I haven’t lost any weight.  I can’t say this doesn’t bother me, because it does.  Although I realize, I have to let my body heal before I expect it to just start functioning the way it used to.  I would love to lose the weight, but for now I am trying to approach exercise as something that is just good for my body.  

I mentioned in an earlier post that I really enjoyed pilates before my breast cancer.  Well, I am happy to share with you that I still enjoy it, and I am almost at the level I was before my cancer.   During my radiation treatments my sister came across a pilates program just for women with breast cancer.  It’s called pink pilates.  We started doing pilates three times a week until I needed to stop near the end of my radiation.  It felt wonderful to be doing something I used to do.  I felt a great deal of accomplishment. 

There are several programs out there that are just for breast cancer patients.  Yoga and pilates are the two I see most frequently.  Although I do a regular pilates program now, it’s important to remember that after breast cancer treatments, your muscles and tissue are healing and you should take good measure to not injure yourself.  Always check it out with your surgeon and oncologist before you start. And, make sure if you cannot find someone in your area that specializes in exercise for breast cancer patients, TELL your instructor what you have just went through; surgery, chemo, radiation – whatever your situation is.

Here are a few links that might be helpful to you and I thought I would share my favorite at home pilates workout.

I use this workout at home.

Monday, September 19, 2011

Keeping It All Together

Life can be hard enough to keep track of without throwing in a major illness like cancer, but when it does, keeping things together is a little bit of a challenge.  I’m not even talking about emotions here, I mean the new lifestyle you have just acquired.

My husband and I tried really hard to keep things as routine as possible for my son.  Everything I had read emphasized the importance of doing so.  So, with the help of my family and friends, we were able to get him where he needed to be.  But how could I know where to get him to and who was getting him there, when all I could think about was where I needed to be and who was getting me there.

I cannot begin to explain how the mind works.  But, for me it’s hard to focus on so many things at once, especially when some of those things have a much louder voice.  Often times the less demanding parts of life would fall through the cracks.  No one really expected me to keep up at a normal pace, except for me of course.  But now there were just too many things for one mind to keep track of.

Music, 4H, Art, FLL Robotics, Scouts, field trips, birthday parties, sleepovers, doctors appointments – in town, out of town, tests, lesson plans, payroll, board meetings, work….Did we have family prayer?  Did I buy groceries this week?  I don’t think we have milk for breakfast. What did he just say I have to do?  What does that mean?  Are you going to remember that?  I think I just glazed over.

Luckily I found a few very helpful tools, and I want to share them with you.

1.      Google Calendar!  A great friend I home school with turned me onto Google Calendar before all this and I am so glad.  You can create calendars for every member of your family and have them show up on one screen.  You can set up reminders to be sent to your email or phone.  This was God sent.  I could not have functioned without it.

2.      A good old fashioned divided accordion file folder.  Every appointment and test you go to, you will have notes, pamphlets, paper work, test results, receipts, business cards, etc.  Keeping them together in a file folder is the best way I found to keep track of vital information that could otherwise get lost.   File Folder

3.      A small voice recorder.  I know this may sound odd, and I will admit I felt silly taking it out during my appointments.  But let’s face it, it is really hard to digest everything we hear while sitting on an exam table.  Digital Voice Recorder

4.      A big purse or small bag to keep it all in.  I used an old purse that worked perfectly.  I kept my folder, a current copy of my Google Calendar (you can print them), my recorder, my wallet, and whatever else would fit inside it.  Everything I needed went in this bag.  If I took it out, I made sure to put it back – that way when I was rushing out the door, everything I needed was already in my bag.

Friday, September 16, 2011

Thank You!

For the past three weeks I’ve been trying to share some of my personal experiences with breast cancer. It’s not always easy.  Some days I wake up and know exactly what I want to write, while other days I have to think about it, for awhile.  I keep a list of things I want to share, and I find that sometimes I skip over certain ones, waiting for the right time to post them.  I know everyone is busy and I certainly don’t want to waste your time.

My goal with this blog is to share some of the things that I’ve learned along the way.  Some of that learning came in the way of books, websites, and from people in the know (aka, my doctors and such).  But, a great deal of that learning has come from experiencing the great love of my family and friends.

Today my blog hit 1000 views – I am so excited!  You are reading it. And, hopefully you are learning something and then sharing it with others. Thanks!

Thursday, September 15, 2011

A Place for Everything...

A place for everything, and everything in its place. Love it!  I am that woman on the commercial, day dreaming about kitchen containers with labels on them. All the shelves are neatly organized and you can see everything at a glance. Not that my house looks like that, but I can dream.  How does this have anything to do with breast cancer?  Well, when you aren’t able to do much of anything, you notice a lot, and sadly it’s all the things in your house that are in need of attention. Your attention. But, you can’t do anything about it.  So it just nags at you.

My sister and sister-in-law, knowing how happy it would make me, shopped all over for baskets and other storage items.  They helped me organize everything from the Wii remotes in the living room to my now small pharmacy in the bedroom.  This seriously helped to maintain my sanity.  Not to mention, when you have so many people in your house helping, it’s really nice to have a place for things to go.

Here are a few places I love to dream about:
Crate and Barrel
The Container Store

And always, Target, Ikea, and the local TJ Maxx (aka my favorite store in the world).

Wednesday, September 14, 2011

Just Do It!

I am not a huge fan of the gym, but I do like to stay active.  Before my cancer I was a pretty busy person, and my schedule varied from day to day.  Finding time to “work out” was really hard.  So, I would go for things that didn’t take much time, but my body responded well to.

Each of our bodies respond to the foods we eat and the type of exercise we do differently.  It’s important to eat healthy and exercise, but do it smart.  Me, I am not a runner.  Heavy cardio is not my friend.  I feel awful and I don’t get a good return for my efforts.  I always had great results with pilates.  It made my body more flexible and better balanced. Just before my breast surgery, I tore my ACL snow skiing.  After that surgery, bike riding was easier for me than walking. And, after my double mastectomy, I had to adjust my exercise yet again.  Besides physical therapy, I had very good luck with a balance ball.

The point is this, you don’t always have to exercise like crazy or do whatever is trendy, but you do need to exercise.

The connection between cancer and exercise is amazing.  Not only does exercise help to reduce stress levels (and good golly do you feel stress with all this), but by adding just 150 minutes a week you can reduce your chance of recurrence or death of breast cancer by 40%. Now I might not like official exercise, but I’m no dummy.  I can certainly include 150 minutes into my weekly schedule.

Don’t take my word for it, there are tons of articles and studies available on the internet.  Here are a few you might find interesting:


Tuesday, September 13, 2011

Food Nights, a Great Idea!

Things can get a little hairy in a hurry when you start your cancer treatments.  At least, for me that was the case.  Before I started my chemo treatment, I read a lot, trying to figure out what to expect.  There is a lot to chemo treatments (but I’ll save that for another post).  Let’s just say, I wasn’t the picture of the woman on the pamphlet who still could go for walks everyday and go to work and make dinner, and…  However, I wasn’t in the bathroom all day and night either.   For about the first eight weeks I was in bed most of the time.  The next round of chemo was much kinder.  But, I was really tired all the time, and I had a hard time being much, if any, help to my family.  My mother, the amazing woman that she is, would take care of me, my house, my son, and would try to make dinner for us every night.  It didn’t take long for her to realize that she too needed some help.

So, food nights became our solution.  We belong to the best family outside of our own family – it’s our church.  These sweet ladies signed up to bring dinner for us once a week.  And, my mother-in-law solicited help from our family and friends for one night a week.  We now were blessed with two meals each week.  This was another great blessing to my family.  In two ways really, the food, of course, eased the burdens of my husband and mother, but in addition, it was so nice for me to get to see friendly faces. 

It may be hard to comprehend how something like food nights could make such a difference in one’s life, but it was the difference between overwhelmed and staying afloat.

Monday, September 12, 2011

A Great Blessing

I have to share with you all one of my greatest blessing during my chemo.  It was my sweet mother.  I mentioned before how she and my mother-in-law cleaned each week for me, but that was really just the tip of the iceberg.  Actually an iceberg is a great analogy for my mom.  On the surface she is a pretty woman with a sweet smile, yet underneath she is an amazing being.  She is powerful, smart, compassionate, and the glue that binds our family together.

You must know that my mother can accomplish more in the first few hours of the day than most people do in a week.  Literally!  I’m not sure how, but I’m pretty sure she doesn’t sleep.  After getting her house in order and taking care of my dad, she would come to take care of me.  It became our new routine.  She would come as my husband left and start my first juice of the day as I was getting out of bed.  Then without fail she would make scrambled eggs for me.  I must tell you, my mother hates eggs.  The smell of them makes her sick (actually she is allergic to sulfur), but for whatever reason scrambled eggs seemed to be the only thing that would stay down and that I wanted to eat.  So this beautiful woman would make them for me, everyday.  Five months of making eggs is a long time. She would then make my second juice of the day and visit with my son and I as I ate.   

I cannot begin to express my love and appreciation for her, nor can I adequately describe her to you in this short post, but she was to me, then and always, a great blessing.

Friday, September 9, 2011

It’s all Greek to Me

There are a few things in life that just completely baffle me.  Like the stock market!  Not sure why, but that totally eludes me.  I must admit I don’t really have a desire to figure it out.   Pathology Reports, well they were not far off.  When I got my first report back after my biopsy I recognized a few things and knew that couldn’t be good, but it wasn’t until I met with my oncologist (my translator), and reviewed a few books, that I could understand, for the most part, what it meant.  Even then, I remember the phone call I got from my oncologist after my surgery.  She asked me if I had talked with my surgeon about the pathology report, did I know what this and that meant.  As I sat on the other end of the line, I really hadn’t put it together the way she was now telling me.  I tried to respond with some manner of intelligence, but I am pretty sure she could sense I was thoroughly confused and thrown for a loop.

I had a local oncologist that I would see from time to time as well as my main oncologist at Mayo.  I would see her at least once a week, sometimes more.  Both of them were wonderful.  They made sure I understood what was happening and what my reports meant for me personally.  They asked me questions and expected me to ask questions.

Here is a pathology checklist I found very helpful, as well as two books that did a great job at breaking down a pathology report.


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