Almost a year...

Really?! I cannot believe it has been so long since I have written a post.  I guess that could be a good thing - life is certainly getting back to normal.

As I looked at the blog and realized my last post was almost a year ago - I couldn't help but think "WOW!"  I just put this year's meet on my calendar - October 15.

So of course it made me reflect on this past year and I am very happy to say that it has been a good year for my family and I.  My son is growing into an amazing young man and turned 15 this year.  We finally took that roadtrip we have talked about for years (you can see some fun photos here).  I have made it another year past my surgery date (this is the one I base my time off of - I can remember it) and am working toward my five year mark. My sweet husband and I had our twentieth anniversary (that is a big deal - applause). I am teaching art a couple days a week in a local studio and that has been a lot of fun (you can see that here).  Yes in deed - It has been a very good year.

Health wise - I am feeling pretty good.  Side effects from various things seem to be creeping up and creating issues, but I will save that for another post.  My next big scans are scheduled for October 14 - so with mcuh anticipation and fingers crossed, that too will go well.

SWIMMERS...Getting Wet to Save the Set

I have to say this month has been full of all sorts of fundraisers, various calls for Breast Cancer support, school support, etc. BUT when my son brought this home I thought "How Fun!"

University, DeLand, & Atlantic High Schools

SWIMMERS

Getting Wet to Save the Set

My son currently swims with his High School Swim Team and they are participating in a special  swim meet on October 8 where all the proceeds go to our local Cancer Center. Obviously this is near and dear to me on a variety of levels - I want to support my son and his swim team, but I feel so honored that they are swimming to support survivors and raise money to continue the efforts.

DHS Swim Team Logo

"C" is for...

 is the ability to confront fear, pain, danger, uncertainty, or intimidation.

(According to Wikipedia.)

Yep, it takes lots of this my friends!

But we can have courage to move forward in our lives 

- we just have to believe we can do it & appreciate where we are in our journey.

"B" is for...

So many things in life are intangible; we can't see the air but we know it's there, we can feel it on our face, we can watch its effects as it moves through the trees. And yet there are still so many things that we may not know or have answers for but we can BELIEVE.

Believe in Ourselves.

Believe in the love of Others.

Believe that Things WILL Work Out.

Believe that we can be better tomorrow than we are today.

We can Believe!

"A" is for....

What a good word - right?!  I think we all could have more appreciation of the good things we have in life.  Lately I have been experiencing a lot of overwhelming moments in my life (I'm going to blame it on my new hormone therapy) and I could certainly make quite a list for you, BUT like I said - I am going to try to forget them and focus on the good stuff.

I love my husband - he is so good to me.

I love my son - he is so kind to me.

I have an AMAZING family.

I need to appreciate them more!

I need to appreciate all the wonderful things
I can do & stop feeling sorry for myself over what I can't do.

Yep, I like this word!

Just for Fun!

I keep myself pretty busy, but every now and again I have some free time and I try to catch up on family and friends.  As I was reading the latest blog entry at Knee Deep in Grace, my Aunt shared something she is working on, taken from another blogger's challenge - Blogging through the Alphabet.  I thought that was a really fun idea.  However I am not sure I can take on the challenge and accomplish it the way it was intended.  But I really wanted to do it - so I thought I would give it a shot, just keep it simple and do on my own here.

Here goes - for "A" I am going with.....

Breast Reconstruction - Part 2

Today I met with a plastic surgeon at Mayo Clinic to discuss some specifics of options available to me for breast reconstruction.  I have researched this quite a bit in the past - kinda keep pulling this package of the shelf to check on, get a little overwhelmed and decide to put it back.

About six months ago I met with my breast surgeon and she actually made the appointment for me, just to answer some questions I had.  You see it is really weird, hard, confusing, and a variety of other descriptive words - you feel like life is moving along, your feeling pretty good about things, thinking you can maybe handle doing this; I mean after all it would be nice to have breasts again, I think. Then you think some more and well me, I talk myself right out of doing anything (maybe not you).  So it was a good thing I just had to show up and ask questions.

My options were for the most part the same, however my radiated skin was looking pretty good and he felt as though it could be successful to do an expander followed by an implant.  This was big news!  Up to this point I didn't have this option.  Of course I was warned that the skin could be difficult, could form an infection, then everything would have to come out, wait to heel up and start all over. So that just sounds super appealing, but compared to 10 hours of surgery, 3-5 days in the hospital, and a lot of scaring - maybe it wasn't sounding awful.

Seriously though, I had a very good surgeon who listened to my concerns, asked me questions about my lifestyle - what I did and didn't do; all to help determine which would be the best option for me.  When I expressed my fear of another major surgery, he completely understood.  I finally feel like I am able to live my life pretty similar to what I had before my cancer - to start over or limit my abilities to do things I enjoy for 8 months or even the rest of my life is really a tough decision. I know it may seem like a no brainer, but not really.  I think the hardest part of the experience is the emotional heeling that has to take place in your life.

Sometimes I feel very frustrated with my options, and then I am reminded like today..."We don't have a lot of women (with my advanced stage of cancer) in your situation, most of them don't make it this far." 

Then I am quickly reminded of just how blessed I am!

Here are a few links that you may find helpful when looking at breast reconstruction as well as what to talk to your plastic surgeon about.

American Cancer Society - Breast Reconstruction
Breast Reconstruction.org
American Society of Plastic Surgeons

I'm still here!

I must say I have not been very good with posting much lately, but I am happy to report that "I am still here" and doing really well.

This Valentine's day, February 14, 2013, was my two year mark for having completed all of my cancer treatments.  I am so excited - mostly because I finally feel like I am getting back to a remotely normal life again.  I'm not saying that I don't still have twenty pounds to loose and get tired much faster than I used too, but hey - I'm happy and enjoying my busy life with my husband and almost fourteen year old son.

This past month I have started a whole new phase of my ongoing treatments - what does that mean?  I have a whole lot of research to do and share.

Moments of Reflection

Today I sat down to check my emails and found I had a facebook link added to my timeline by one of my aunts.  I was of course curious and went straight way to the link.  

I was touched and overwhelmed with her sweet entry on her blog

 Knee Deep in Grace.  

As I read her post I couldn't help but remember the first time that I met her...she is married to my husband's uncle.  I am not even sure if I was married yet, but I do remember it was the first time I had met my husband's uncle and his family.  We were at another aunt's home with quite a few of us gathered for a family event.  My Aunt Penny had her brother with her and I remember how tentative she was to him and kind.  He was clearly in the process of his cancer treatment; tall, thin, and very comfortable with the mass of people.  I remember the thought crossing my mind that he was so young - really not much older than my husband and myself at the time.

I'm not sure why, but I even think of cancer as an illness you get when you are old.  When you see someone young it always has a significant impact on you.  It seems so out of order with the way we feel things should be.

So as I read I could not help but reflect on the many people who I have had in my life who have been effected by cancer.  Sadly there were quite a few.  Some old and some quite young, but all have become connected to me in a new way.

Finding cancer early is our best hope for successful outcomes.  

The best way to find it early is to know about it.

Take time to check it out...

The Loss of a Good Friend

Last week was, well a little overwhelming.  After a little more than 2 years I lost what had became my best friend.  No, I didn’t lose an actual real live friend, but I did lose something that had become very important to me – my port.  

Shortly after my mastectomy I received a power port prior to my chemo treatments.  I was horribly anxious about the procedure.  Even afterwards, I could simply think of the thing and physically get ill.  It seemed so strange and foreign - this small thing just under my skin that protruded up like a tracking device.  I remember the disturbing way it felt when I would put lotion on – I would hurry so as not to feel the little nubs. 

I never forgot it was there because with every shower, every change of clothes, or car ride it would inevitably get bumped, touched, or rubbed on.  But somehow the weirdness faded and I truly came to appreciate it as a precious gift. 
 This became the blessed spot for all my chemo injections, blood draws, die injections, anything that needed to come out or go in me for tests or treatments went via my port.  No more pricks and pokes trying to find a good vein.  No more bruised arms (or should I say arm, as I can only use my left arm for such things).  No more cold sweats trying not to pass out as the tech was trying to insert a small catheter in my arm.  (I do not have cooperative veins – at all!) Not to mention I had numbing cream to put on my skin – beautiful!  If anything was a blessing to me – this port was.

 But alas, last week I went in for some routine tests and my doctors discovered I had developed a blood clot at the end of my port catheter.  Needless to say, they scheduled surgery to have it removed immediately.  The next day I laid in the hospital using my port for the very last time as I had a blood thinner run through for two hours.  With a very kind surgeon (and Ativan and lots of Lidocaine), 5 hours later, my port was sitting on the table beside me.  I was all good to go – no additional blood thinners needed.

Now I have to adjust to being just normal (as you were treated very special by the chemo nurses who were the only ones allowed to access your port) and going to the general lab for blood draws.  Praying my veins will be cooperative, wondering if I can completely cover my arm in numbing cream, and trying to be brave for my upcoming scans.

I will admit, after the initial sadness, there is a part of me that feels like I have hit another milestone with the removal of my port.  For that I am happy.  Now if I can just get through September with what feels like a month full of tests and scans – all alone.

Stem Cell Breast Reconstruction

I wanted to share this short video with you... A few reasons; 1. I think this procedure is just amazing. 2. They share some important information regarding who is eligible. and 3. It mentions something important to know ahead of time - to request a skin and nipple sparing mastectomy WHEN & IF your skin is cancer free.

I was not able to have a skin sparing mastectomy, but a lot of women are.  I know sometimes Dr.'s as well as the patient are just so eager to get rid of any chance of cancer that they choose to remove everything.  Often times that is the best choice you have, but sometimes it might not be.  Take time to research your particular situation; tumor size, treatments required, reconstruction options, genetic testing, and talk frankly with your oncologist and surgeon.  More than likely, you have had your cancer for some time and waiting a week or two to take the time to make a decision you will be happy with for the long haul is more important than you can imagine.

Breast Reconstruction

I must say to you all - I have put off writing this particular post for quite some time.  I want to stay fairly positive with my blog, and breast reconstruction is a really hard subject for me.  But as I am moving forward with my checkpoints - it is the next thing down the line.

When I was first diagnosed with breast cancer I began to research every facet of the disease and the various procedures I would most likely have to undergo.  I still remember sitting at the computer and reading the descriptions of the various types of reconstruction.  As I reviewed a few of them I even told my husband I could not imagine why anyone would ever choose to do that.  Not that I didn't understand their desire to have the breast reconstruction, but why would you choose such a difficult surgery.  Little did I know at the time that it wasn't really their choice.

You see there are a few different options available; you can have immediate breast reconstruction with a skin sparing mastectomy, you can have implants with an expander during a later reconstruction, or there are FLAP procedures where the surgeon removes muscle and skin from other parts of your body and builds a new breast with it.   I have to say I have always been afraid of plastic surgery and had long told myself that I would just have to grow old gracefully because I could not bring myself to inflict pain upon myself.  Did I say I was a little afraid - I mean seriously scared.

Prior to my mastectomy my husband and I met with my oncologist, surgeon, and plastic surgeon.  I must say I was a bit naive when I went to see the plastic surgeon - I just wasn't aware of how naive.  As he began to explain various procedures and show pictures he kept indicating that that wasn't an option for me and would flip on to the next one.  For a brief moment I couldn't hear him as he spoke. I could only recall the images I had seen online, and a voice in my head telling me "it's going to be that awful procedure isn't it".  When my head cleared and I again joined the conversation, I heard just what I thought I would.  Because of the size of my tumor and my need for radiation - I would have to select a FLAP procedure. 

I can tell you that I had to put a lid on that package and hide it on the shelf for quite some time because of my intense fear of this procedure.  It is hard to find stories of people in my particular situation and my research brought me little or no comfort.  Yet I am optimistic with the new studies and advancements in breast reconstruction, and am sure at some point I will make a choice I feel good about.

For now I have my prosthesis and wear it occasionally - mostly in my swimsuit.  They are hot and the band of the bra still bothers my radiated skin. A lot of people choose to never have reconstruction, I may not.  But, I will tell you that of all the aspects of moving forward it is emotionally very hard to know that a part of you is missing that truly seems to embody what we think of as feminine and defines us as women.  I don't always miss my breasts, but it is pretty odd to not have nipples.

There are several informative sites on breast reconstruction which I will share with you as well as a beautiful photo journal I would like to share.  I'm hoping that it will not offend you, but will instead help you to better understand a woman with breast cancer.

The Scar Project

Breast Reconstruction 

I also found this video very informative, but it is a very long one;

Radiation

I can remember almost to date when I finished my chemo and radiation.  Not so much because they were so significant, although they were, but because I seemed to finish up on holidays.

I finished my last radiation treatment one year ago today.  I can hardly believe it.  Radiation for me was, well a little scary.  I still remember the first day.  I wasn't exactly sure what to expect, but as the male technician came in to get me set up in my mold, I knew it wasn't that.  I remember holding back tears of nervousness and embarrassment as I lay as still as I could.  It wasn't long though that I came to love my two technicians, Gene and Bonita.  They were so very kind and that made all the difference in the world.

After my surgery and chemotherapy, I had to have 33 treatments of radiation to the right side of my chest and shoulder area.  By the end some areas were pretty burnt, but I was surprised at how well it healed.

There are different types and reasons people have radiation.  Here is a link that explains them in better detail - Types of Radiation.

I found a few things that helped me a lot during my treatment - one was of course Aloe.  Fresh aloe that I kept in the refrigerator was wonderful as was Aloe 99.

Another skin saver was Lindi Skin Cooler Roll. This was a gel like sheet that you cut to fit the size you needed and applied directly to the skin.  I kept this in the refrigerator as well, so it was nice and cool.  I was amazed at the amount of heat it would pull from the radiated area.

I also had a prescription for biofene - I loved this stuff.

I would take naps every day and drank cold water constantly.

My skin is pretty sensitive to begin with, but during radiation your skin becomes very sensitive to touch and the rubbing of fabric.  I hunted all over for soft cotton shirts that didn't have side seams or seams that hit on my collar bone. For me I found it more comfortable to have a snug fitting tank under my shirt.  I didn't like when my skin would rest on skin (underneath your arm).  It seemed to produce heat and want to stick together.

I can also tell you from experience that as the burns begin to heal, they are much like any other serious burn - your skin will peel.  Be very careful, your clothes can stick to it and pull the skin off - not good!  I had to keep a sterile gauze over mine at the very end and sometimes would have to let water run over it to soften and release it without pulling away the skin.

Testing...

I am very happy to share that my report went well.  I had a variety of tests this past week and so far it is looking pretty good.  My tumor markers were well within range and my PET scan did not indicate any recurrence.  My CT scan did find a couple of things, one of which was on my last scan and then a new one.

It is a mixed feeling of relief - when everything looks good, but a test finds "spots".  OK, so what are the spots?  Are they going to develop into something at some point? Then you have to tell yourself; "Just enjoy this and stop looking so far ahead!" And really I do tell myself that, but then my curiosity gets the better of me and I start to research my tests results.  I use the phrase knowledge is power from time to time on my postings, and I believe that.  But I can also tell you that sometimes too much information can just plain freak you out - or at least me.

While I was researching my test results I found it very interesting that tumor markers are different for different types of cancers.  So I thought I would share the link;  Specific Tumor Markers

I also am on a routine schedule of having a PET/CT scan every four months for my first year out of treatment.  So, I will have my next scan in March of 2012.  There is a lot of debate about having the scans too frequently and I am happy that my oncologist takes that into consideration, but being a high risk cancer patient, it is important to monitor any changes.  I am just fine with that.

Here is a good link that explains the test and what the difference is, as you can have one without the other.  PET/CT Scan

Triple Negative

If I were playing the slots, three in a row could be a good thing – right? What are the odds of that!  Pretty exciting, no?

Well alright, obviously I am not talking about casino games and sadly in this case, it’s not such a good thing.

Triple negative has to do with the type of breast cancer you have.  It refers to the part of your pathology report that indicates if you are PR, ER or HER2 positive or negative.  And for those of you who may not have read my post on pathology reports, it has to do with what makes your cancer grow.  The ER is the Estrogen Receptor, PR is the Progesterone Receptor, and the HER2 receptor is a protein found on the surface of certain cancer cells.  

All three of these indicate what makes (and how) your cancer grow.  If you know what makes your cancer grow, you can find successful ways to treat it.

Triple Negative refers to all three ER, PR, and HER2 being negative and it is probably a breast cancer patient’s worst nightmare.  10-20 % of breast cancers are triple negative, so that’s about 1 out of 10. BUT triple negative is most commonly found in younger women under 40 or 50.  And according to various research for women in the USA, women under 40 have a 1 in 233 or .43% chance of developing breast cancer.  So that 1 out of 10 just became a little more prevalent.

This was a small miracle for me.  I did not have triple negative breast cancer.  For awhile reports indicated I was triple positive, but again small miracle here, I was not.  My husband’s step mother however did.  It can be a pretty scary thing. Triple negative is a faster growing and typically a higher grade cancer than most.  As well, it does not respond to some traditional treatment methods.

For many young women this can be a devastating reality.  I don’t know what is the right option for screening and early detection in women under 40, but surely learning all we can to recognize our risk and what those are is a good step.

Here are a few good links that better explain.

How Triple-Negative Breast Cancer Behaves and Looks 
You CAN Survive Triple-Negative  

Giving Thanks

Yesterday we had a lesson on gratitude at church and I couldn’t help but think of all the many things I have to be thankful for. I love this time of year; the weather changes, the scenery changes, it just feels good to get outside.  This morning I was able to take a nice deep breath and enjoy the time change.  I went for a walk while it was still cool outside with my mom and sister.  It is a good day!  I feel very blessed to have my family near me.

November seems to be the month that we all think of the things that we are thankful for, but this year it is much more for me.  I had my last chemo treatment the Monday before Thanksgiving last year.  I can hardly believe I am reaching so many of my year marks.  I also have two big tests lined up this month and will finally be able to know if I am cancer free.  I have to admit I feel a bit anxious.  To think of starting over or having more surgery is a bit overwhelming.  So I am going to stay positive and hope for the best.

Regardless though, I have never been more blessed and am thankful to be at this stage of my journey.

All Those Pretty Packages

I must say I had to temporarily put the lid on my breast cancer package so I could focus on my mom package.  It seems as though this time of year gets so busy so quickly.  One minute you are feeling pretty good, life is moving at a pace you can keep up with and then it hits, and things without a deadline get shifted to the back burner.  Well, I can tell you, that has definitely been the case around here.

I am looking forward to a weekend filled with plenty of treats and minimal tricks, and am hoping you all will have all the front porch greeting, monster meeting, and candy eating you can handle!

We Did It!

This was the first breast cancer walk I have participated in and can I say - WOW!  There were so many people.  It was inspiring. Yet another reason I am amazed by the outpouring of love and support.

Thank you to my team.  You guys were great.  I have to say I am so proud of my mother, she made it over two bridges and didn't even break into a cold sweat.

Breast Thermography

I have to say I have heard more on thermal imaging at airports than I have about breast thermography.  I think something could be wrong here!  Recently I came across breast thermography while thumbing through Think Healthy last month (The whole issue is on my blog post I'm So Proud!).  That was the first time I had ever heard of it.

I couldn’t help but feel a little sad as I read about what it is and how successful it is at early detection in women with dense breast tissue; typically the age range of 30 – 50 years old.  I could spend a lot of time wondering “What if I knew about this? Maybe I could be in a different place than I am now.”  There is certainly no sense to “what if” for me, but for those of you reading this blog it may be very important.

Knowledge is power and this is a perfect example.  If we know what is available to us, we can know what to ask our physicians for.  If they are unfamiliar or hesitant to refer you to something, you have the ability to research and decide for yourself. 

I am a firm believer that we know our bodies better than anyone else, but that comes with some age and experience.  When I first went in to my primary doctor with a lump, I was a little nervous, and unprepared to ask questions.  We ended the appointment feeling somewhat satisfied with our assumptions that is was a fibroid cyst.  I agreed to watch it and return if there were changes.  I did notice the lump over the next few years, but it would come and go, so I thought no change.  Once the lump was consistently noticeable, I knew what it really was.  

If I would have known the things I do now, I could have asked for screening or sought it out myself, if for nothing more than to ease my mind.

Here are a couple of links about breast thermography.

What is Breast Thermography? 

The Correct Role for Thermal Imaging  *Be sure to read this article completely.  Very good.

Beautiful Days

I love the changing of the seasons.  Here in Florida they are a little less noticeable than some places, but the signs are there.  Our trees are beginning to lose their leaves and many of the garden flowers are dying back.  Last week the air was even a bit cool.  It felt so nice to get outside.

Take a walk, go for a bike ride, work in the garden, anything!  For me getting outside is like losing myself to the lovely sights and sounds.  My mind clears and the stress leaves, even if it is temporary.  And I need that.  For many reasons, but especially to forget about myself for just a bit.  Forget about doctor's appointments and tests.  Just take time to feel like my old self.

I never forget my experience with cancer, but sometimes I need to try.  I need to let the worries and cares slip from my thoughts and enjoy the moment I am in - right at that very moment.

I hope you all will be able to get out and enjoy a little worry free time in your week as well. Happy fall!