Updated: Aug 25, 2021
Oh wait I can't call you, (not that my brain has yet learned that). Every day I want to call you, I always have info to share, feelings to share, things to run by you. I miss you so much.
For those reading today I've enclosed tidbits from my mom's chart which I have been reading over the last few days. I hope it serves as a warning to those who do carry the PALB2 gene and I hope it gives others an idea of why my sister and I have chosen to do prophylactic's mastectomies, instead of just screening. I also hope that these pics give you an idea of just how wonderful my mom was, and why we feel she was taken much to early.
The photo above is from her wedding day. Pictured left to right are two women who were her best friends over 40 years ago and remained her best friends until her death. Sue (my mom's friend from the cottage the blond one. Sue has already made a trip out to visit me at the cottage, and it was so lovely to have her there, it felt just like the so many times I plunked myself down at the table with her and my mom. All that was missing was mom) & Pam (my god mother, the tall one, the voice of reason. Pam has been a constant support since she learned of my mom's diagnosis, and has known my dad as long as my mom) followed by my mom's only sister (my auntie) Robin. Then my mom and dad and my dad's older brother (uncle) John.
The second photo is of my daughter wearing my mom's wedding dress. I took this picture shortly after my mom's diagnosis, knowing she wouldn't make it to my daughters wedding. Her dress didn't fit me or my little sister, and continues to hang in my closet. (my own dress sold shortly after my own wedding)
Above are some snippets of our life. My mom and my dad's mom (Oma) hosted basically all large family gatherings over the course of my life. (In an span of 14 months my dad lost his mom and his wife, and we lost our oma and mom) To my knowledge every birthday cake I ever had was made by her. (I think the bottom pic was possibly Easter or another event) my second birthday I'm surprised to see was a chocolate cake. Every other birthday she made my favorite, home made angel food cake cut in half with whipped cream and strawberries in the middle and all over. To this day I have not made one birthday cake for either of my children. Told ya my mom was awesome.
My mom loved every single bit of her grandkids, she spent as much time as she could with each of them, and probably would have allowed us to stay at her house for months on end as long as we brought them with us. This picture is from the last time my mom saw all her grandkids together. It wasn't a special event, it was just April, and I heard my brother was headed there and figured since I'd had my second dose of "the vaccine" that I'd join him. I'm really glad I did. We all thought we would have more time with her.
My dad did a great job this Christmas. He upgraded my mom's engagement ring, and gave her a second pretty yellow diamond ring as well. Most years my mom picked her own presents or went shopping with him, I'm not sure if these ones were a surprise, but either way he nailed it and she was happy. I am lucky to have inherited some of her jewelry and because I was closest in size to her, I've also inherited many of her dresses and shoes. Know what I'd like more than jewelry, dresses and shoes though?
More time. More funding going to presenting every cancer survivor with genetic testing, to prevent this fate to other second time cancer getters and their children. Am I still pissed that she wasn't offered genetic testing the first time she had breast cancer? God Damn right I am.
First picture is us at Dunns River Falls in Jamaica, it is one of the two trips I took with my mom without the rest of the family. My maternal grandparents had a time share at Club Caribbean, in Runaway Bay for 17 years. Each of my siblings went once with my mom and grandparents. The resort still exists, a co-worker went on her honeymoon a couple of years ago, perhaps one day I'll go again...post covid
The second is us three girls at Scarlet Park (our cottage, near Orillia) a place my mother loved and had wonderful wonderful memories. My uncle David who has half the cottage had offered to let her go up as much as she wanted during their month this year, as he too, knew how much she loved being there. Unfortunately she didn't make it to the summer.
The third is my mom, laughing with a neighbor at one of the many parties she hosted at home in Queensville, Ontario.
Getting approval to walk with friends again in the neighborhood, was monumental for my mom. She had a group of ladies from close proximity who walked everyday, they called themselves "the lost ladies". Mom was a supply teacher so she had the liberty to pick up the schools and grades she wanted, when she wanted. Once a week one of the "lost ladies" would host a tea party.
Tea, walking, talking, and friends, four very important things in my mom's life. My mom didn't drink alcohol at all except at a wedding or the very rare glass of "French Cross" wine, (my mom was a riot when she did have a little to drink, I wish she did it a bit more often) tea was her thing. The fact these walks were given back to her, even though only for a few months much improved her mental state and quality of life, and I'm grateful she was cleared to do so.
Middle pic is my mom with my baby sister. Man did I want a baby sister, thanks mom, and thank you Katrina, for visiting her every weekend from the time she was diagnosed till the time she passed. I love you. (the last pic is Halloween, a time dad really got in to the spirit, my mom makes a real pretty nurse, he doesn't make a real pretty lady though. Sorry dad)
When we were young, before my parents took over half of the scarlet park cottage, we used to go up to "the farm" it was 100 acres of land with a little old farm house on the property. (up near Wasaga Beach) Opa was a brick layer and Oma a cleaner, immigrated from Germany. They had 5 children, a house and a farm. Oh to live in the olden days when things were affordable. The first picture is taken at the farm, with one of the many stone fixtures built by Opa or the kids, the second is just fam at Oma and Opa's house and the third is a pic of "Uncle Howard" and Grandpa (Al Hewitt, if you're reading this and related send me a comment so I can send you the genetic info to get tested free for our lovely killer, boob taking gene), at the surprise, 40th anniversary party my mom hosted for her parents.
The fall prior to Covid my mom had us host her and my dad a 40th anniversary party at their home. I wish we could have done the same for her 65th birthday, stupid Cancer, stupid Covid. That was the last big party that my parents we able to host.
Take note of the study below. It is my understanding that this is what killed my mom. Yet two weeks after her death Princess Margaret Hospital called for a follow up appointment... not sure how close anyone follows these "clinical trials" but hey, they kill people, think twice before trying one.
A few days before her death she told me that she has "done her part for cancer research, wont be partaking in any more studies and wont be going to Princess Margaret anymore".
The hospital told me they didn't think I'd need to visit her on her 65th birthday the Tuesday after that progress note was written. They thought that she had been getting better, that she would be in hospital the weekend, re-assessed Monday morning and likely released. I took that to mean released home, to the home my parents built, that they built in such a way they would never have to leave. That they built so they could live on just one floor if needed in their old age, released home with her husband, not "home" to the funeral home.
Still looking through mom's chart. I mean nothing will bring her back, but I'm finding it interesting that
May 13 she was charted on 9 times before 4pm
May 14 she was charted on 9 times before 4pm
May 15 she was charted on 12 times before 4pm
May 16 she was charted on 3 times before 4pm -
May 16 found with no vitals at 16:15 aka 4:15pm.
I just... maybe I'm missing something?
Guess it doesn't matter at this point, but I know it's each individuals choice whether to go for preventative mastectomy if they have the PALB2 gene.
I can tell you this, regardless of whether she went due to cardiac arrest, or went 1.5 years from now, slowly declining with cancer. She was given 2-3 years to live. Because she went sooner she did not have to suffer long in the end, but if she had had a double mastectomy after the first cancer... she would not have got the second, worse non-curable cancer. She would be alive today. If she had a DMX she would be there when my baby sister gets that baby she has been trying for, she would be there when that concert her and Katrina had tickets to finally happened, she would be there at the Bread Bar Sunday Brunch we love to go to when it opened in "stage 2 or 3 or whatever or Ontario's map to re-opening, she would have been there last week when my brother took his kids on the trip she planned to attend with them to Santa's Village.
She would have been there. (she was always there)
She would have been there dressed beautifully, with matching accessories enjoying her time with her kids and grandkids.
We all miss my mom, and I compartmentalize the best I can, but sometimes I just can't.
I'm worried about the fact my sister needs a follow up appointment for an ultrasound.
I'm worried that when I go on Tuesday for my MRI, they will find something, and I'll need a follow up ultrasound.
I'm worried that my surgery will have complications (but more worried that these ticking time bombs will not come off fast enough)
Yearly mammograms are not enough.
Sorry but "God" does not only give us what we can handle. My mom couldn't "handle" a second bout of cancer at age 64. (both my grand mothers lived almost 30 years longer than 64 BTW)
If there is a family history of breast cancer and no one has thought it important enough to test those family for mutant genes. Pay... "God" gave you a credit card for a reason right?
Sorry if I lacked a trust in God after my friend became a widow in her TWENTIES
I sure lost more when I learned that the church has murdered and buried no less than 1605 indigenous children in un-marked graves, and the "god following" people that run those churches wont take accountability.
Love you mom, hope for your sake there is a God cause that means you're in Heaven, you wanted four babies and I hope you're up there taking care of the one you lost until us three one day join you.
I miss my mom
P.S God if you exist sorry, these people down here especially the "religious" ones and Trump supporters are really making a bad name for you by playing God and attaching your name to things.
P.P.S if you believe in God, you believe everything happens for a reason, and in that case he gave you a credit card for a reason. A genetic test is a good reason. He also gave you the option of cutting off those potentially killer knockers.