Friday, March 29, 2013

Guest Post: Parenting and Caregiving

Guest Post: 
Cameron Von St. James

Being a New Parent With Cancer

Having a baby is a joyous occasion for anyone, and when my wife Heather and I welcomed our little Lily into the world in the summer of 2005, we were ecstatic.  Little did we know then that just three months later, we would be thrown into a nightmarish whirlwind of cancer treatments as Heather struggled to overcome an aggressive form of the disease, Mesothelioma
It wasn't easy.  All of the challenges that come with adjusting to parenthood were amplified because we were so short on time and resources.  Heather had to leave her job, and I needed to take considerable time off in order to care for her and Lily.  Meanwhile, there were sleepless nights worrying about my family’s future.  I needed to take care of both my wife and my daughter, and Heather needed to remain close to her little girl despite her own pain.

All we could do was our best, and while we struggled, there were wonderful moments every day as we watched our daughter grow and cherished Heather's small triumphs.  We were able to be together more because Heather needed me so much, and that brought all three of us closer together.  While I wish that she had not needed to go through the pain and fear of that experience, I am thankful for the sense of intimacy that this period fostered.  It showed us that we could tackle any challenge that would come our way.

It also demonstrated to us that it really does take a village to raise a child, as well as to fight a dangerous disease.  Neither of us could have done it alone.  We had a veritable army of babysitters, meal providers and just general helpers who were there for the three of us when we needed it most.  We learned who our real friends were and came to rely on their kindness, setting aside our pride for the sake of what needed to be done.  I know that both of us would happily do the same if one of those friends were in need.

Being a cancer caregiver is hard, and I had to learn fast with the added pressure of a new baby in the midst of our cancer battle.  If you are a cancer caregiver, I hope you can take a few lessons from someone who has been there before.  Take all the help you can get, and don’t let your pride get in the way.  Allow yourself to have bad days, this is inevitable with the amount of stress and fear you’ll likely experience, but always remember to never, ever give up hope.

Thankfully, not everyone will face the kinds of challenges we did, but every family must deal with unexpected hurdles.  Don't let them discourage you.  Life is a beautiful gift, so embrace it together.

After months of extensive mesothelioma treatment, including surgery, chemotherapy and radiation, Heather was able to defy the odds and beat her cancer.  She has been cancer free for seven years.  She is the strongest person I know, and I’m so thankful to be able to spend everyday with her.  After making it through this terrible battle, we now hope that by sharing our experiences, we can help inspire others currently going through a similar battle. Never give up hope, and always keep fighting for the ones you love.

You can read more from 
Cameron Von St. James

Tuesday, March 19, 2013

My daughter's view on how she was inspired..

The Girl was asked to write a short paper about what she learned about stereotypes, over coming adversity poverty and drive when studying about Olympian Lopez Lamong

He was a victim of the second Sudanese war, a boy snatched from his mother, 
A lost boy.

This is The Girl's paper...

I am the same age as my mother was when I was born.

My mother has tried her hardest, and done her best. She shields me from the negativity and stereotypes. She is more than a teen parent and I am more then the child of one. I am may never know the struggle of poverty because, my mother shields me.

I am not a poverty stricken, child of an unwed 14 year old mother.

I am a straight A student
I do what I am asked (mostly)
I am independent, strong willed and driven.
I am Olivia ********

I am free and protected. Lopez Lomong was not.

Lopez Lamong, a 6 year old ripped from his mothers arms, taken to be a child solider.

And he ran.

He ran for safety, and now, a lost boy is found.

A great man, who over came, and rose above war, poverty, oppression, and ignorance. He did not run away, but ran for Africa.

Among the oppressed and poverty stricken. To those who face  insurmountable odds. He is a  true victor.

I am not my stereotype.
 I am not my situation, 
as Lopez Lamong  showed me,
 I will not and cannot let circumstances define me, but only drive me to greatness. 

needless to say....
I am so fucking proud.

Time to let go...

After some long discussions with a friend, and the Mr. 
I have realized that i have to just let go of some things.
It is an unfortunate decision that will affect me, 
I'm not sure about how this decision will affect the other people involved in my decision.
I am not one to let myself or my family be taken advantage of.
And that is exactly how I feel,
taken advantage of.
When I have nothing to offer, you want nothing from me, 
but if you need something, 
my phone is quick to ring...
Of all the invitations that are offered by us, 
very very few are offered by you.

Its never anything big, 
but all the little slights add up, ya know??
You are so caught up in your own little world I don't even know if you realize how far you have pushed me.
Well now you know.
I cannot be the one you call when you need something, 
I have given and given, 
with nothing in return, 
not even a thank you
really that is all I wanted. 
Its not just me either, I have seen you do this to quite a few people in the years I've known you.
Someone is a friend as long as they have something you want, or can do something that benefits you.
It's really sad, 
I thought our friendship was more than that, 
but I guess its not.

If you are reading this, and you probably will, and feel anything, this might be about you. Or it may apply to some one else in your life.

I am sorry, 
but I cant keep making time for some one, who wont make time for me.

Friday, March 15, 2013

Boobies, an update!

 I met with a new doc,
 I absolutely love her!!

She was able to tell me exactly what is going on and for that I am so thankful!
I have duct estasia, 
Its gross really, all of the secretions your breasts produce get all clogged and gunky and fill the duct just behind the nipple, that in its self is one thing, but mine ruptured causing inflammation and fat necrosis. 
She did take a tissue sample and I also have ductal hyperplasia, or an overgrowth of cells that line my ducts.
It is not cancer, but it can become cancer.
My treatment plan is pretty easy,
I will always probably have ductal estasia. but it wont always be a problem, I am getting my yearly mammograms starting now, instead of a baseline at 35, and yearly at 40, and that is just because of family history and because I have ductal hyperplasia.
If I am a carrier of the BRCA1 or BRCA2 gene mutation, my follow up is increased to alternating mammogram and mri every 6 mos, as well as as a pelvic exam w/ultrasound every 6mos and a blood draw every year to monitor tumor markers in my blood.
I can also opt for a hysterectomy as soon as i start showing signs of menopause to remove my ovaries, tubes and uterus to lower my risk of ovarian cancer, as well as a prophylactic mastectomy and reconstruction to lower my risk for breast cancer, as well as take a estrogen binder, Tamoxaphen, to help lower my risk as well.

Yesterday I also saw the geneticist,
The vampires took my blood, 
and in the next three to six weeks I will know if i have one of  the genetic mutations that increase my chances for getting breast and ovarian cancer. 
I am anxious to know if i am a carrier of either of these mutations, not only for me to just know, but so I can have my kids tested at 18 to see if they have them as well. There  is a 50/50 chance if i am a carrier that one of them have it. 
I have also spoken to Shawna about being tested, if she has the mutation  my brother can be tested as well as her siblings for the mutation if they choose.

So the roller coaster is over for now!!
Don't forget to check your boobies!!!

Wednesday, March 13, 2013

Exciting Revelations... a reunion in the works!!!

So i have written about being adopted, 

below are links to the story

I have some exciting news.
In May I will be flying to North Carolina to meet my birth parents,
and my brothers.

I am so excited. 
It will be scary and amazing.


Tuesday, March 5, 2013

Boobies... Just checkin'

Ok, so in my last few posts I talked about my boobs and seeing a surgeon.
Well the first surgeon could not answer any questions, at all.
So now, well not now, tomorrow I will make my way to the city on the hill, (seriously this particular hospital is like 4 hospitals in one) to see a new surgeon, and see what she says.
Then on the 14th I meet with a geneticist to see if I have "fatal genes" or the BRCA 1&2 gene mutations that would put me at higher risk for breast cancer.

Seems like time is creeping by. Lame.

The thing the mr and I have been discussing is, if I have one of these mutations, would I choose prophylactic surgery. A preventative mastectomy (surgical removal of both breasts) with a reconstruction, and prophylactic removal of my ovaries to prevent ovarian cancer.

Those are huge decisions. The boobs not so much, I mean really, who wants floppy boobs? But the early menopause? No hormone replacement? Yikes.