Decision

The other day my head oncologist called and we were able to chat about what I am supposed to do to avoid getting ovarian and uterine cancer.
The final verdict?
Full hysterectomy with hormone replacement therapy.
My onc tells me that being so young, taking Estrogen is actually beneficial to me to avoid further cancers and other complications related to my ovaries being removed. I know the stigma attached to taking estrogen is that is causes cancer but in my case it isn't true. Especially with my cancer being estrogen negative.
So I am happy with the news. I would like to remove any parts of me that have a high chance of getting cancer, but ONLY if the other side effects are minimal to none. Taking HRT makes it little...maybe not none, but little.
I am ok with that.
My mom has decided with her surgeon that she will be having a full mastectomy early in January. It's funny how against the surgery she was for the first diagnosis of cancer, but now that it is back it's like "Take these things OFF! I am SICK OF THIS CRAP!" type mentality.
I don't blame her, I felt that way the first time! If I don't need em' and they can cause my demise...get rid of em'!
I am sad for my mom though. I know it will be hard for her.
Scars are tough. They remind us of the fear and the illness.
But I think we need to change our mentality so that when we look at them they remind us of our courage and accomplishment.
It can be easier said than done however.

Christmas is in the air and I like it this year. I am feeling very thankful for my life and it's richness.
Last year at my husband's work Xmas party I had just found out that I had cancer and I didn't really enjoy myself.
This year (tomorrow) I am so excited to let loose and celebrate a long trying year with a successful outcome!
Tis the season!
Cheers!

My momma.

So I have been waiting for a phone interview with my oncologist in Kelowna to discuss whether or not I should take HRT and remove my uterus. I am hoping she basically tells me a yes or no on the subject as I am finding it is as hard as ever to make decisions. I can't even decide what to make for dinner let a lone a decision that could affect my life span. I am thinking I am leaning towards the full meal deal. I would like to try to avoid cardiovascular disease and osteoporosis as best I can.
So the other day marked my one year anniversary of my diagnosis. The day I drove to Trail (an hour away) with my dogs and kid in tow, thinking I was clear of cancer only to be told I wasn't.
Officially the worst day of my life. BAR NONE.
Ironically this date brought me back to Trail as I was doing some work for Selkirk college in the area. AND Ironically I was at the chemo room in Trail that day, dropping off business cards for my new wig business I have opened up here in Nelson.
Anyway, the day had a weird vibe for sure. It was a long day. I drove around the koots for six hours visiting salons for work and it gave me a lot of time to think about where the year has taken me. In general I believe I am in a better place now than I was a year ago. However it is something I have to work at. reminding myself of where I've been and what I have been through to keep me in the right frame of mind and to keep me positive and grateful.
After my 6 hour drive I worked at the salon for 6 hours on clients. It was exhausting.
During my last client, when I had put all of her foils in and she was "processing" I went into our staff room and checked my cell phone. There was a message from my mom.
She was crying I could tell.
I called her back and she said
"Megan it's back."
right away I knew what that meant.
She had found a lump in her armpit weeks earlier and had it biopsied. I guess her results were in.
In the summer when we found out we had the BRCA1 gene, I mentioned to my mom she should think about having a mastectomy. I knew her recurrence rate was high.
she mentioned she would continue to screen and then I said "Screening is great but it won't prevent you from getting cancer again, and ultimately if you get it again, you HAVE to go through treatment again, no matter how early you are diagnosed."
My mom was contemplating a prophylactic mastectomy when she was re diagnosed.
So here we sit.
Same as before....
Christmas is coming, and someone has cancer...
My sister just had a baby and someone has cancer...
it is all too familiar.
(my mom's first diagnosis was in December and my sister was pregnant, my diagnosis was a day before my sister's b-day...December 3 and my mom's new diagnosis was a day before my sister's b-day December 3...5 days before my sister's baby was born...significance?)
My heart aches again.
It aches for my mom and it aches for my dad
it aches for my sister and my son and my daughter and my husband.
We will be saddling up again,
like it or not,
we have another bumpy ride to take.

OOOOphorectomy vs hySSSSSSterectomy.

Today I went and saw my kick-ass Gynecologist. I will call him G-Doc so that I don't have to type that long title anymore than I need to.
I was hoping and praying that he would tell me that I could go ahead and just have my FALLOPIAN tubes out and then I could avoid the early menopause thing. Removing my ovaries would put me into early menopause which puts me at a higher risk for Osteoporosis and Cardiovascular disease. I guess the younger you are (when they remove your Estrogen source, the higher the risk for these side effects)
G-Doc wants me to consider taking hormone replacement therapy in order to prevent the side effects (or lessen them) but if I do that, I could possibly increase my chance of recurring breast cancer & I have a significant chance of developing uterine cancer. SO! He thinks I should then consider removing my uterus as well.....the whole SHA-BANG.
Wicked.
So, now I have a decision to make.
Oophorectomy and that's it.
Oophorectomy with HRT (hormone replacement therapy) and risk Uterine Cancer
Or FULL HYSTERECTOMY and hormone replacement therapy.
hmmm.....
kinda wishing I was deciding on which Mexican resort to go to instead.
Sick of making decisions on how to keep my heart tickin'
At 31, I should be deciding if I want a cosmopolitan or a crantini.
This bites.
ciao.

"The Official Call"

I woke up this morning knowing I would be getting the official phone call from my genetic counsellor telling me whether or not I have the mutated BRCA1 gene.
Up until now I have been told that it is pretty much a for sure thing. So why does it bother me so much? Why did I feel the dread of the call? Why did it wake me up, reminiscent of last December when I was told I had cancer?
I guess it's because it affects my kids and other family members. It takes cancer to that next level in my life. "Go on, fuck with me cancer, I can take it...but leave my family alone."
So the phone eventually rang.
Straight to the point she went.
"You, as we suspected, have the same genetic mutation as your mother. You are BRCA1 positive."
Instant tears.
Instant fears.
I did get some interesting things out of the rest of our conversation though.
She began talking to me about my ovaries. I should have them removed because there is a direct link with this gene and ovarian cancer and my risk is greatly increased. I already knew all of this...
I told her I went to see my Gynecologist last week and he mentioned the new study that Ovarian cancer actually may start in the fallopian tubes, and so it may be a possibility I could just have my tubes out, which would spare me from early menopause (which in itself carries a lot of health issues and side effects). To avoid removing my ovaries would be fantastic in my eyes, so I mentioned it to the woman on the phone.
She told me I was in fantastic hands if my GYN was researching this option for me, and although the study is so new and there hasn't been any long term proof that it will work, it is definitely looking like a possible option.
I will wait until my GYN doc calls me back after consulting with his colleagues on the issue. If it seems like a realistic solution, I will go for it. I can always have my ovaries out later as well, closer to the time I would naturally go into menopause. that way it could be a win/win situation.
Another good thing I got out of our conversation was that it isn't entirely IMPOSSIBLE for me to test my children for the gene before they are 18.
Initially I was told that if I tested positive, there would be a 50% chance each child could have the gene. I was told however, that I couldn't have them tested. They would grow up not knowing and then they could make that decision on their own when they turn legal age. the more I thought about this, I didn't like it. I asked my genetic counsellor if this was a set in stone thing. Is there ANY way I could have them tested sooner rather than later? She proceed to lightly dance around the question trying to explain that they don't like to do it, that is has been done and has proven to be a negative thing. Either the child grows up and says they didn't want to know and didn't have a say in the matter or the positive results cause the parent to overly control the child's life and so on. I felt I needed to explain my feelings.
I told her that I want to know because I am currently living in sadness. When I look at my children I already feel like they have the gene and I am currently living this way. I stress when they want sugar, I know I will cringe when they want an alcoholic drink and so on. If I KNEW for certain, I would A) either be relieved that they tested negative and can let go a bit, though I would still encourage a healthy lifestyle...or B) if they tested positive, I would educate myself even further and continue to put my energy into surrounding them in a healthy world.
My G.C said to me, "What if Lily grows up and doesn't want to know."
I told her that I wouldn't let either child know the results, I wouldn't even let them know that I have had the testing done. I would let them grow up knowing there is a chance they could have this gene and then when they are old enough they can decide if they want the test. If they came to me and said they wanted to know, I would then tell them, I already have the results and sit them down and tell them.
Then the G.C said, "What if you knew Lily was positive and she was getting to the age where she should have the prophylactic surgery (preventative mastectomy they recommend at age 25-45) and she wasn't wanting to know her results?"
I told her that I respect every one's choice in knowing the results or not. I would respect my daughter's choice, but I would let her know that she has to always be proactive and have consistent screening, mamos, ultrasounds and physical exams. I told her that even if she did know she was gene positive, she could choose not to have the surgery and even though I strongly advocate in favor of the surgery, I would respect her choice and do the same thing....push her to have early screenings. I told her even if she was tested and was negative, I would push her to have screenings and be proactive.
The conversation ended with my G.C telling me she will move my request to have my kids tested further to the board of geneticists. They will have to grill me and play a game of ethics and then they will make a decision whether they will test them or not.
It is definitely an interesting topic for debate.
I know she doesn't know me, and this info in the wrong parents hands could be a disaster and essentially traumatize a child. But I am confident with the situation and what I would do with the info. I know that I would be respectful and responsible with the information.
I believe the information would benefit me and my children in helping us live the healthiest lifestyles possible.
So today was the official call.
The snow is falling, just like it was a year ago when this whirlwind began. Saturday is the one year anniversary of my first lumpectomy...the unknown surgery, not knowing if I had cancer or not.
I don't forget the feelings I had.
They are as clear to me today as they were then.
All senses fired. Crystal clear and defined.
And though I am grateful for my health one year later, I can't help but wince when something like a song, a Christmas ornament or a snowflake triggers those memories.

(this was my song last year)

sorrow.

Today is the day the genetic counselor will say the magic words
"You have (or don't have) the BRCA1 breast cancer gene."
Though everyone has already told me there is a very slim chance that I DON'T have it...I am clinging to that small chance.
This week has been very hard for me. I had to SQUEEZE Herceptin into my schedule and it STILL got in the way of me working and making $300. I was resentful to say the least.
Then I really started thinking about my oophorectomy (removal of ovaries) and I started to get depressed.
I guess it began when I received a letter from my Oncologist in Kelowna. She wrote that it is a good idea to have them out and there is no point in waiting til I am older, as long as I am done having kids.
Then I read that this procedure (including the removal of my fallopian tubes because of the new discovery that ovarian cancer actually starts in the tubes) has serious consequences. I read that (quote)

Removal of ovaries causes hormonal changes and symptoms similar to, but generally more severe than, menopause
Women younger than 45 who have had their ovaries removed face a mortality risk 170% higher than women who have retained their ovaries.
AND THE GRANDADDY OF THEM ALL....
Oophorectomy significantly impairs sexual well-being. Substantially more women reported libido loss, difficulty with sexual arousal, and vaginal dryness and hormone replacement therapy was not found to improve these symptoms.
(WIKPEDIA)
Now I am hoping that these statements are false...because the thought that there is truth in them has brought me to tears every night this week. I am like a leaky faucet and tears won't stop seeping from my eyes.
I am sad. really, really sad.
I am sad that cancer has already taken my breasts, that I can no longer feel anything touch my new breasts and I have scars all over my body. And now cancer might take my female organs. I feel very sad about this.
What if I don't feel like a woman after the surgery.
What if it does cause me to die young?
What if it does ruin my sex life?
Why me.
I have had enough.
enough for today.
enough this year.
enough.



(turned out they called and arranged a phone appointment for the following week...see the next entry)

Diving into it all....

Before I was diagnosed, I didn't think I would be the type to embrace my disease..to wrap it around me and wear it for life.
I kind of thought that type of behavior was pathetic and even unhealthy.
I mean who would be faced with an illness and then once cut free of it, choose to keep it part of your life?
Well, keep your friends close and your enemies closer!
I know that cancer is not WHO I am, but I know that I had some serious chats with God over the last 9 months and I know that I have a duty.
Not even just an obligation, but I have been touched by the disease and knowing there are so many out there feeling that hopelessness that I felt, I just cannot sit back and keep quiet.
I need to help.
It is impossible not to!
I didn't sit down and plan out a future in advocating and sharing my story and helping out. It just naturally happened and it's getting bigger everyday!
I think it's a bit addicting.
In a way you could argue that it isn't even a charitable action, it is actually kind of selfish... I do it because it makes ME feel good to help.
I guess in this case of selfishness, everybody wins.
Since my diagnosis I have reached out to many women who have been diagnosed with breast cancer...emails and care packages and advice.
I have stepped right in to my support group, smothering myself all over those ladies and their kind hearts.
I spoke on the radio a few weeks ago...telling my story on the air, to kick off breast cancer awareness month and a local fundraiser.
I am off to Toronto next weekend for the Young Woman's Breast Cancer Conference...eager to learn what I can do in our community to help out.
I am considering becoming a facilitator for our breast cancer support group in the new year...
I am starting up a WIG business within Renaissance (the current hair salon I am working in)
I guess you can say I am staying involved...
I thought in the beginning, that this cancer would be something I would want to "wash my hands of", However, I think my biggest fear was letting cancer win.
If it didn't take my life, then the next worst thing would be that it would scar me and leave me deflated.
Because of that fear, I chose to learn something from cancer. I took it and squeezed every last bit of good I could get out of it.
I will continue to keep my cancer experience close...
but from now on it will be because I CHOOSE to.

Pumped!

Planning on getting my "WIG" training next month from the best lady in Calgary...look out! Soon I will be offering WIGS and WIG SERVICES at Renaissance in Nelson for anyone in the area..
cancer patients, alopecia, and for just plain old fun and beauty!
Can't wait!
If you live in Nelson...spread the news!!