I got the results today for my genetic testing of the BRCA1 and BRCA2 gene.  The BC Cancer Agency called me yesterday to make an appointment to give me the results.  They generally do it over the phone.  I had a full day of waiting.  So anyway, I don’t carry those genes.
There’s the good news.
She did say, just like the first geneticist I saw, that there is obviously some factor in my family, be it a gene they haven’t isolated or even some environmental factor that is causing the breast cancer.  She said there was far too many cases of it in my family for it to be just chance.  If I’d had the genes, it would have increased the odds of other female family members getting cancer.  That’s not to say that the odds aren’t high for them as it is, but talking to the geneticist, is sounded like the genes would have almost sealed their fate.  Like I said, it was good news.
Because of the high incidents of it, and because an aunt and I were both diagnosed premenopausal, both of us at the age of 47, that my nieces and probably anyone else, can get a mammogram at the age of 37 with a referral rather than having to wait until their 40’s.
She also suggested I keep in touch with them, and that if they can isolate any other factors, they can test me for them.  I’m all for that.  Anything I can do to help promote diagnoses or help isolate factors or genes or whatever.
This does raise more questions for me.  Part of me was kind of wishing I tested positive, then I could blame getting breast cancer on something.  But now what?  Something caused this.  Something caused all these women in my family to get breast cancer.  I would really like to know what it is.  I also hope that by some small miracle, I am the last one.  I really don’t want to see any more of us go through this.

So I still have some things around that remind me of what I went through.  Don’t get me wrong here, I’m a pack-rat of sorts and tend to hang on to things a lot longer than needed but this stuff would be so easy to toss out and toss the memories them.  I’ve gotten rid of most of the reminders like the drugs I had to take.  Took those to the pharmacy the other week so they could dispose of them.  I’ve put away all the extra bandaging I had.  I only need to see it if I get a really bad cut or have more surgery(not planning on it!).
On my bathtub is a bottle with the remainder of the special soap I needed to use for my last surgery.  It’s a very small bottle, but I see it every time I step into the tub.  I’ve kept 2 of the hospital bands I wore while I was in the hospital.    They’re on my night stand.  I see them every night when I go to bed.  I don’t see them in the morning because it’s too dark  in my bedroom.   It’s not like I need any reminders.  I am reminded every time I look in the mirror at my short hair, every morning when I take my Tamoxifen, every time I walk up a set of stairs and my knees still want to give out, every time I get dressed.
For the most part I think I’ve been really good about ‘getting over it’.  I try not to talk about what happened unless I’m asked.  I can look normal now that my hair is longer and people think it’s just the style I chose.  I have my foobs that make me look like I have a bust.  And the days I get scared that the cancer will come back or really depressed because my life changed a lot more than I anticipated, I wait till I get home to have a good cry.
Take yesterday for example.  I went Christmas shopping and happened past one of my favorite underthings stores.  They were having a sale so I went in and made some purchases.  At the till she was pushing for me to buy a bra.  I said no thank you  twice.  The third time she pushed I gave up and told her I’d had a double mastectomy, no point in buying one of the pretty bras when I can’t wear them anymore.  She was really apologetic after that and gave me a discount that I should have spend more money to get.  I just wanted to have a ‘normal’ day.
I remember mentioning I’d read somewhere that the time it takes to get over this is the same as the time it takes to go through it.  I had one month of knowing it was cancer then 8 months of surgeries and treatment.  The end of this month will be 8 months, the end of December will be the extra one.  Way I see it, I should be absolutely fine by the time 2013 rolls around.  I’ll throw the reminders out for the new year.

I was recently asked by a reader of my blog if I’d be willing to post something from a caregiver.  My answer was yes!  I think it’s important to show all sides of cancer.  Not just what I went through, but what those around me went through.  This man’s wife doesn’t have breast cancer, but another rare form of cancer.  Regardless, cancer is cancer and the fallout is all the same, and the people around the cancer patient suffer as well.  Sometimes their stories are more important than ours.

This is what he wrote:

Caregiving for a Cancer Patient – How My Wife’s Diagnosis Changed Our Lives

My wife has often said that she doesn’t understand what it was like for me after we learned of her mesothelioma diagnosis.  I have only really discussed this openly with her on one occasion and with this I hope to share more of what it was like for me.

Three months before she had been diagnosed with mesothelioma she had given birth to our first and only child, Lily.  We went from being blissful, happy parents to a period of fear and uncertainty.  I can remember the day the doctors broke the news of the mesothelioma diagnosis to us. I remember looking at my teary-eyed wife wondering, “How will we ever make it through this?”

I was feeling really overwhelmed by the news and I was really on the verge of completely breaking down until the doctors brought me back to reality with questions about the treatment she would be receiving.  This would be the first round of difficult medical decisions we would have to make regarding my wife’s health.

I was full of rage, fear and resentment when I first learned of the news.  I didn’t really know how to properly control my angry outburst, and at times, I communicated with others using profane language.  I eventually learned how to better control my emotions.  I realized I had to remain strong for my wife and daughter because they were depending on me to be at my best.  I had my moments, but I was always careful to maintain my composure when around my wife.  I never wanted her to see just how frightened I was.  I needed to be that rock for her.

Right after the diagnosis there were days where I felt like I would never be able to get anything done.  I had to balance parenthood with work and arranging care for my wife.  I was initially overwhelmed by it all but I soon learned to prioritize and focus on the most important tasks.  I also learned to accept the help from friends and family members who were there for us during our time of need.  We were very blessed to have so many people offering us support and help during that time.  Truthfully, I don’t know how we would have made it through this tough time without the support.  Even with all of the support we received, I still felt stressed out and overwhelmed with responsibilities at times.

There was a really stressful period that stood out to me most looking back.  It was directly following her surgery in Boston.  After the surgery my wife flew to South Dakota to recover at her parents’ home.  Lily had been staying with her parents during the time of her surgery and my wife stayed there until she recovered from the surgery and prepared for her next round of mesothelioma treatment. During those two months I was only able to see them once.

One Friday after finishing up at work, I hit the road for an 11-hour drive to see my family in a snowstorm.  Along the way, I pulled over to grab a few hours of sleep and wait for the roads to be cleared.  When I finally arrived at her parents’ home that Saturday morning, I was really exhausted.  I spent the remainder of that day with them.  After getting more time with them on Sunday morning, I was back on the road to be home in time enough to get rest before work on Monday morning.

While it was really difficult for me to be away from sick wife and young daughter, I never really see it as a loss.  I made the best choice for my family.  I knew that there was no way that I could really be there for my young daughter and work full time during that period.  I don’t regret any of the decisions I had to make during that time.  I understand that I did what I needed to do during that tough period of time.  The cancer diagnosis forced us to make really tough choices, but I took comfort in the fact we had some control in this otherwise vulnerable position.

If I learned anything during this time it was to be grateful and always accept the help offered from family members and friends.  I take comfort in the fact that I was able to have some control during this tough and challenging time.