Life has changed dramatically for me in the past couple months since I first posted.
I started my kids in public school, (and consequently pulled my autistic daughter back out) which has been a dramatic change in our home life. The other kids seem to enjoy school, although we were insanely sick for the first couple months. We had two different strands of the flu, norovirus, strep, various stomach bugs. You name it had we had it. For two solid months this house was filled with puking, pooping, feverish kiddos and it was hellish.
Fortunately for us, Spring has finally arrived. The kids are settling in to school routines and life is different for us all. I am slowly coming to grips with my son Jasper being my true last child. He's 10 months old now and we are slowly weaning. We are trying to focus on new goals for the family, namely traveling, homesteading and spending more time doing the hobbies we already love.
I joined a support group for women who are BRCA mutation positive and it has changed my life. Their stories of inspiration and strength have rocked me to my core. I have slowly started to realize what a gift this knowledge is and it's allowed me to truly, for the first time in my life really... start living.
Gone is the crippling fear of who might think what, and who might say what, and what must I do and how must I do it. I finally feel free to be whoever I genuinely want to be and not worry about what ANYONE has to say about it. I feel like I've been let out of a prison and I truly am free to be me.
Weird, Compassionate, Stubborn, Graceful, Honest, Genuine, Spontaneous Adventure Loving ME.
------
I applied for a scholarship to attend the FORCE conference in Philadelphia this summer in June. FORCE (Facing Our Risk of Cancer Empowered) is this amazing non profit organization that was created just for women like me- with a family history and BRCA mutation status. It empowers us with information and connects us with one another so that we may learn, grow, commiserate and celebrate together. I feel truly blessed that God has put this resource at my fingertips. I learned am I receiving a full scholarship to attend. Plane tickets, hotel, conference costs- all covered. It is one of the greatest gifts I could have received given this situation.
The old Heather wouldn't have applied for that scholarship. I would have made excuses as to why it's not for me and been riddled with anxiety over the idea of going alone and not knowing anyone there. But the new Heather? I'm excited! I can't wait to connect with others going through the same exact things and just hug them and say.. HEY! It's going to be okay! We are in this together!
------
Just over a month ago, a friend lost her 11 year old daughter to a genetic disease called Canavans. It was devastating, and heartwrenching. Everyday on facebook she shares old photos from their short 11 years together and you can see just how they truly lived those 11 years to the fullest. It inspired me to want to REALLY START LIVING.
Life is too precious to spend one more second not living it. Our days are numbered and as much as it sucks to think about, all of us will live our last day one day. I'm tired of feeling like I'm waiting. I'm waiting on finances, or waiting on situations to change, or relationships to evolve. I'm tired of waiting to live!
I have long dreamed of having a farm. I realize it's just not going to happen anytime soon so instead, I'm going to turn my own urban home into the best mico farm (urban homestead) that I possibly can. I'm suddenly seeing trash that can be upcycled into treasure. I have a deep desire to just get on with life- even without the acreage to start a true "farm"-- so thats my big goal. Turning my home, into an urban homestead; complete with chickens, gardens, an orchard, a greenhouse, bees and yes maybe even a couple mini goats eventually.
Sound crazy? Maybe it is. But its what I want, so I'm just going to go for it.
I feel like I have been given such a precious gift... knowledge. That knowledge has finally given me the strength, courage and ability to finally be free.
As for surgery, I am going to be having my hysterectomy first. It's going to be in July, right when Jasper turns 1. That will have hopefully given my body an entire year to heal from the delivery of him, and I will hopefully have a smoother recovery as a result. Once I heal from that, it will be on to the "big show.." - my bilateral mastectomy.
For now though, I"m going to tend to my gardens and fruit trees and live in this moment-- and REALLY live in it. It's ok to make plans for tomorrow, but, it's also important to live today.
positive
Thursday, April 23, 2015
Tuesday, January 27, 2015
Everything Sucks
A "Sorry Fuck"- thats what I was called. It stung. Stunned me really. First I was sad. Then I was angry.
The message went something like this "'I'm sorry heather. You're nothing but a downer lately. And I gotta let you go as a friend. I don't need sorry fucks in my life. FYI you should have believed in God more and had #9! Take care!"
Before I could even reply back that I had my 10th last summer, I was blocked and that was that. I thought it was a joke but quickly realized I'd just been shamed by some wolf who'd masqueraded around as a friend for years.
Well alrighty.
My entire adult life I've believed that my destiny was in the hands of God, including my fertility which is why I had ten awesome wonderful children. Some people who also subscribe to this belief feel that by choosing to stop having children and having a hysterectomy, I am given up my faith in God. It's been a pretty disgusting week of opinions. I like to think that God has given me the gift of foresight here and I had all the children I was destined to give birth to. Perhaps our family will grow one day- when our babies are older, we may foster or adopt. Who knows what the future holds?
Trust issues. I've got them. I wear them like scars that won't heal regardless of how hard I try. This entire situation has really brought me into a new light. I am realizing just how short and precious life is. As such, people, in all their ugly glory are showing their true colors. Some are beautiful beams of light shooting through the darkness like stars, bringing hope and truth and light. (Ahem Sarah, Jaime, Claire, Kimberly, Dana, Holly, and all you girls that know just what to say and when to say it) and then there are the ugly sorts who sanctimoniously sit behind their phones and computer screens smugly hurling their admonitions and judgments like... well.. assholes. Sometimes the truth is just as ugly as that. We all know what comes out of assholes, right?
They say that hard times will reveal who your friends are. That's true. I'm an emotional wreck these days. I'm scared and coming to grips with being a "mutant"- (what a freaking terrible word!) My therapist says that I have gone so long being the one to take care of everyone else, that it's difficult for me to accept being the one that needs help being taken care of right now. It makes sense but it makes me feel weak... and like a burden. No one likes to feel like a burden to anyone. No one likes being a debbie downer and being told they are a sorry fuck when they do open up to 'friends.'
------------
First week of school and we are all already sick. My twins are struggling and "hate school." My son Noah came to my room the other night and angrily asked me why I put them in school. 'Why didn't you try harder, Mom?" It broke my heart for a while. I'm struggling with feeling like I've made the wrong choices and understanding that I can't do it all. I can't. I know I cant.
I have the flu. I've been sick for days. I am fairly certain I will have to reschedule my appointment with this breast oncology surgeon tomorrow. I can't, in good conscious walk into an office of immu-compromised women with the flu. I guess in a sick twisted way I'm a little glad. I've bought more time to nurse my little guy a little longer.
This season of lasts... its a real bummer.
The message went something like this "'I'm sorry heather. You're nothing but a downer lately. And I gotta let you go as a friend. I don't need sorry fucks in my life. FYI you should have believed in God more and had #9! Take care!"
Before I could even reply back that I had my 10th last summer, I was blocked and that was that. I thought it was a joke but quickly realized I'd just been shamed by some wolf who'd masqueraded around as a friend for years.
Well alrighty.
My entire adult life I've believed that my destiny was in the hands of God, including my fertility which is why I had ten awesome wonderful children. Some people who also subscribe to this belief feel that by choosing to stop having children and having a hysterectomy, I am given up my faith in God. It's been a pretty disgusting week of opinions. I like to think that God has given me the gift of foresight here and I had all the children I was destined to give birth to. Perhaps our family will grow one day- when our babies are older, we may foster or adopt. Who knows what the future holds?
Trust issues. I've got them. I wear them like scars that won't heal regardless of how hard I try. This entire situation has really brought me into a new light. I am realizing just how short and precious life is. As such, people, in all their ugly glory are showing their true colors. Some are beautiful beams of light shooting through the darkness like stars, bringing hope and truth and light. (Ahem Sarah, Jaime, Claire, Kimberly, Dana, Holly, and all you girls that know just what to say and when to say it) and then there are the ugly sorts who sanctimoniously sit behind their phones and computer screens smugly hurling their admonitions and judgments like... well.. assholes. Sometimes the truth is just as ugly as that. We all know what comes out of assholes, right?
They say that hard times will reveal who your friends are. That's true. I'm an emotional wreck these days. I'm scared and coming to grips with being a "mutant"- (what a freaking terrible word!) My therapist says that I have gone so long being the one to take care of everyone else, that it's difficult for me to accept being the one that needs help being taken care of right now. It makes sense but it makes me feel weak... and like a burden. No one likes to feel like a burden to anyone. No one likes being a debbie downer and being told they are a sorry fuck when they do open up to 'friends.'
------------
First week of school and we are all already sick. My twins are struggling and "hate school." My son Noah came to my room the other night and angrily asked me why I put them in school. 'Why didn't you try harder, Mom?" It broke my heart for a while. I'm struggling with feeling like I've made the wrong choices and understanding that I can't do it all. I can't. I know I cant.
I have the flu. I've been sick for days. I am fairly certain I will have to reschedule my appointment with this breast oncology surgeon tomorrow. I can't, in good conscious walk into an office of immu-compromised women with the flu. I guess in a sick twisted way I'm a little glad. I've bought more time to nurse my little guy a little longer.
This season of lasts... its a real bummer.
Monday, January 19, 2015
Back to School
Tomorrow my five oldest children will start public school. We've homeschooled for nearly 5 years so everyone, myself included is riddled with anxiety. This is the first of many ways our lives will have changed thanks to this diagnosis. Admittedly, after Jasper aspirated last fall and then my car accident we were already behind this year so my gut says this is the best the for the kids its just a considerable adjustment.
I had my first ovarian scan last week- it came back looking "like the ovaries of a healthy 23 year old" said the tech. I was like well, alrighty then. She said that women who have many pregnancies and who have never used hormonal birth control often have "healthy" looking ovaries - whatever exactly that is suppose to mean.
I meet with my breast oncology surgeon on the 29th. I have been trying to come up with various questions in regards to the procedures I am trying to deliberate and decide upon. Boobs, no boobs, nipples, no nipples, nipple tattooing- boobs reconstructed from skin from your back or belly, belly fat- Implants or no? Silicone or memory gel? Its like... who knew there were so many options and which one is the right one for me? How about... whichever one hurts the least, and makes me look almost like I did before but maybe a little bit better? I'm worried. Some women look like they've been butchered and I really am afraid I will be one of them once this is all over.
I'm suppose to start weaning Jasper and believe me, I've really tried to cut back but that only led to him fussing quite a bit more and now we are back to square one. He'll be 6 months this Friday, it just seems too darn young to wean. Psychologically, the part of me dealing with the fact he is my last child and the very last I will ever breastfeed is a heavy weight for me to bare. For those that know me, I've lived my life with the mentality that God chooses when to close and open the womb. I have to believe he waited until just now to drop this information into my lap. I asked God for a sign when it was time to be done and as old Jeff Foxworthy would say... "Here's Your Sign." Nonetheless the ache of knowing that each day Jasper is growing and this season of my life is coming to an end sometimes brings me into random bouts of bittersweet tears. I have been extraordinarily blessed. I know this. There is no doubt. Its just . . . hard.
He's starting to pull up on furniture now and I find myself whispering, "slow down sweet boy" every single day. The days are long but the months and years are so short. I am constantly realizing that I am in for a season of lasts and nursing will be a hard last to swallow.
I am so used to micromanaging everyone's lives that sending them off to school is also a hard pill to swallow. It will be a welcome relief, I'm certain but there are so many many fears that I have with public school that the very thought of it makes me stomach flip flop. They need a quality education that I currently cannot offer from home. This I understand. It doesn't make it any easier.
This past week Huffington Post published an article about a woman faced with a prophylactic bilateral mastectomy who decided to throw her boobs a going away party. A large number of women from a support group I've joined for BRCA+ women talked about some of the things on their "booby bucket list" and made me ever more certain that at the very least I need to do a nursing photo shoot before I completely wean. I think I've found a photographer to work with so I'm sure that will be coming up in the next few weeks, too.
The article also brought up a harsh reality of just how many naysayers to the preventative surgical route there are. I've heard claims from people who say its only done by people who are "attention seeking" and some even claimed its a slap in the face to people who have had cancer. I think... wow, Id think it would be a slap in the face to NOT have the procedure done. I think if my Granny or Grandma were still alive they'd both insist I have it done--- I'm being given the benefit of the doubt in a way. The foresight to stop the almost inevitable. Why waste such a gift by not being proactive? That's how I see it anyway.
So... thats my update for now. Lots of ups and downs. Lots of tears. Lots of questions. Lots of everything. Maybe next week will be better.
I had my first ovarian scan last week- it came back looking "like the ovaries of a healthy 23 year old" said the tech. I was like well, alrighty then. She said that women who have many pregnancies and who have never used hormonal birth control often have "healthy" looking ovaries - whatever exactly that is suppose to mean.
I meet with my breast oncology surgeon on the 29th. I have been trying to come up with various questions in regards to the procedures I am trying to deliberate and decide upon. Boobs, no boobs, nipples, no nipples, nipple tattooing- boobs reconstructed from skin from your back or belly, belly fat- Implants or no? Silicone or memory gel? Its like... who knew there were so many options and which one is the right one for me? How about... whichever one hurts the least, and makes me look almost like I did before but maybe a little bit better? I'm worried. Some women look like they've been butchered and I really am afraid I will be one of them once this is all over.
I'm suppose to start weaning Jasper and believe me, I've really tried to cut back but that only led to him fussing quite a bit more and now we are back to square one. He'll be 6 months this Friday, it just seems too darn young to wean. Psychologically, the part of me dealing with the fact he is my last child and the very last I will ever breastfeed is a heavy weight for me to bare. For those that know me, I've lived my life with the mentality that God chooses when to close and open the womb. I have to believe he waited until just now to drop this information into my lap. I asked God for a sign when it was time to be done and as old Jeff Foxworthy would say... "Here's Your Sign." Nonetheless the ache of knowing that each day Jasper is growing and this season of my life is coming to an end sometimes brings me into random bouts of bittersweet tears. I have been extraordinarily blessed. I know this. There is no doubt. Its just . . . hard.
He's starting to pull up on furniture now and I find myself whispering, "slow down sweet boy" every single day. The days are long but the months and years are so short. I am constantly realizing that I am in for a season of lasts and nursing will be a hard last to swallow.
I am so used to micromanaging everyone's lives that sending them off to school is also a hard pill to swallow. It will be a welcome relief, I'm certain but there are so many many fears that I have with public school that the very thought of it makes me stomach flip flop. They need a quality education that I currently cannot offer from home. This I understand. It doesn't make it any easier.
This past week Huffington Post published an article about a woman faced with a prophylactic bilateral mastectomy who decided to throw her boobs a going away party. A large number of women from a support group I've joined for BRCA+ women talked about some of the things on their "booby bucket list" and made me ever more certain that at the very least I need to do a nursing photo shoot before I completely wean. I think I've found a photographer to work with so I'm sure that will be coming up in the next few weeks, too.
The article also brought up a harsh reality of just how many naysayers to the preventative surgical route there are. I've heard claims from people who say its only done by people who are "attention seeking" and some even claimed its a slap in the face to people who have had cancer. I think... wow, Id think it would be a slap in the face to NOT have the procedure done. I think if my Granny or Grandma were still alive they'd both insist I have it done--- I'm being given the benefit of the doubt in a way. The foresight to stop the almost inevitable. Why waste such a gift by not being proactive? That's how I see it anyway.
So... thats my update for now. Lots of ups and downs. Lots of tears. Lots of questions. Lots of everything. Maybe next week will be better.
Sunday, January 11, 2015
Positive
A week ago, I tested positive for the harmful BRCA2 gene mutation. So what exactly does that mean? Well, for me, it means I have an 84% chance of getting breast cancer and a coin flips chance of getting ovarian cancer... NOT a coin I want to be flipping. As a result I will be weaning my 6 month old son Jasper soon, and facing a prophylactic bilateral mastectomy (preventative removal of both breasts) and eventual reconstruction surgery followed by a complete hysterectomy. These procedures will reduce my odds by 90+% of suffering the same fate so many in my family bloodline before me did. I've decided to start this blog so I can keep a record of my journey. I have so much to say, and things I want to share. I've decided to take plenty of pictures and make vlogs along the way. This is the beginning of my journey.
Subscribe to:
Posts (Atom)