First Things First

I must say - I feel as though I have failed my readers who may be experiencing cancer themselves by one important issue.  That is to say I have shared my experiences with you very randomly, 

but if you are starting out on your own journey with cancer

you need to know what is most important and how to put...

FIRST THINGS FIRST

I am approaching my third year since all of this cancer stuff began and I must say parts of it have been a serious learning curve - while other aspects where simply by the grace of God I was placed in the right place at the right time AND with the right doctors. 

I was given books, bought books, and read, read, read...

In all of those books the most important thing it discusses is setting up your medical team.

It is the FIRST thing you need to do!

After all, these are the people who you are going to get to know really well.

AND better yet should know you really well.

A lot of books and websites give you wonderful information about cancer, pathology reports, various treatments available, but they don't always tell you who to be talking to about the information.

It is important to know that if you have just found out you have cancer you most likely figured it out through your general physician or gynecologist.  They will help get you set up with the right people to run the various test you may need.  A biopsy being one of them - so a surgeon will most likely be one of the first people you are sent to.  

However I have found it rather surprising that that is as far as some people get.  

Your team of doctors will most likely consist of:

Surgeon

Medical Oncologist

Pathologist

Plastic Surgeon

Radiation Oncologist

Your list may also include a nutritionist, various support groups, and possibly a psyhcologist.

Personally I feel like at the time you select your surgeon you should also select an oncologist - whether this is the oncologist you stay with or not. An oncologist is a cancer doctor.  They will be the person who will best interpret your pathology report for you (which is key in determining what your medical treatment should be), they are the doctor who will create a treatment plan for you and make sure it is administered correctly.  They will become your best friend for a minimum of five years.  

You need to choose doctors who you like, trust, and are comfortable with.

Ask yourself:

Are they considerate of me?

Are they up to date on medical treatment options?

Do they view me as an individual with cancer and look for what is best for my type of cancer?

Are they informative and talk to me so that I understand?

I think it is also very important to point out that, although your general physician, family, and friends (as well as yourself) will want things to move as quickly as possible. Once you have a pathology report - You NEED to take the time to prepare your team of doctors and not just jump into a lumpectomy, mastectomy or any other surgery.  Once something has been done; often times too quickly and before you have fully prepared yourself with the right doctors, you loose options that may have been available to you but no longer are.

I also want to remind you that you have most likely had cancer longer than you think.  Waiting that extra week or two to have interviews with your doctors, ask them questions, get the answers you feel most comfortable with, and set up a team for you to spend the next several months, possibly years - is well worth the wait.  Never hesitate to ask for second opinions - your doctor should welcome that.  This is your body and most importantly your life.  After your surgery your doctor will return to his normal everyday routine.  You on the other hand will be living with it daily.

Do not allow someone who is only a small part of your cancer journey tell you what is best for you!

I was very blessed in this area - my doctors suggested an oncologist right from the start and together my oncologist and surgeon both agreed I needed treatment options that were not available to me with them.  BUT I was a very advanced stage III invasive cancer. 

 A lot of women who have stage I cancer are not sent onto an oncologist and therefore many of them don't really understand their pathology report.  They are scared of what the future may hold because they don't know enough about their cancer. Become your best advocate - read, learn!

Here are a couple of books I have found helpful information on forming a medical team:

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.

Breaking Ground on Something Amazing

Wouldn't it be amazing if medical treatments could be as unique as each of us are? Well soon that could be a reality for cancer patients.  Some of you may have heard and even read about genetic fingerprinting.  Genetic fingerprinting takes into account that 1% of our DNA that makes us, well, who we are - separating us from everybody else.  Recently a study on breast cancer was released with regard to the genetic makeup of cancer cells.

In the study they found that breast cancer is really just an umbrella name to cover what they say can easily be divided into 10 different forms of cancer.   Professor Carlos Caldas, senior group leader at Cancer Research UK’s Cambridge Research Institute and the Department of Oncology, University of Cambridge, said: “Our results will pave the way for doctors in the future to diagnose the type of breast cancer a woman has, the types of drugs that will work, and those that won’t, in a much more precise way than is currently possible.  This research won’t affect women diagnosed with breast cancer today. But in the future, breast cancer patients will receive treatment targeted to the genetic fingerprint of their tumour." Source below in Scientists Re-Write...

If you'd like to read more here are two links to the study:

Study: Breast cancer not one disease, but 10 distinct diseases

Scientists Re-Write Rule Book on Breast Cancer in Landmark Global Study

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.

Happy New Year!

Time is an interesting thing - don't you think? It moves so quickly with things like our children growing older or vacations that you never want to end, oh and of course birthdays come much to quickly, yet other things seem to linger on indefinitely.

I can hardly believe another year has past.  I have to say, I do miss having a little one in the house - my son seems so grown up now. Our vacations did not last long enough and I have officially moved into a new decade with my last birthday.  (Although I am not complaining as I am happy to have had it!)

I can't say I have any real New Year's resolutions, but I am still in the process of reinventing myself - if you can call it that.  I know I can never return to what I used to be, but I am optimistic that the new person I will transform into will be something better.

So I am updating the look of my blog, ever so slightly, and am hoping that each month I will have some valuable information to share with you.

Many wishes to you all for a  
prosperous and healthy New Year!