Julie started the group Inflammatory Breast Cancer Mothers. She intended that this would be a small group of women who could share their stories and talk about their children.
When I joined Facebook Angelique found this group and thought it might be one I would like, she was right.
There are a few special ladies in that group and Julie, of course was the most special of them all. She gave me an ear when there wasn’t one to be had.
Only nine days ago Julie and I were having a conversation. Julie said her hair was about ready to fall out again and she was looking puffy from fluids and steroids. She also said she just needed to get through “this.”
“This” being a stem cell transplant because after all her treatment for Inflammatory Breast Cancer (IBC), rarest and most aggressive form of breast cancer which affects 1 in 200,000 people, she was diagnosed with leukemia caused by her chemo which affects only 2% of people. Julie was then given more chemo and than was diagnosed with Myelodysplasia which only 1.8% of cancer patients get after treatment. This is where “this” comes in.
I told her that she was going to get through “this” nothing else would be acceptable. I told her puffy and no hair can be dealt with. I told her that she was an incredible person and the cancer had nothing to do with it.
Only six days ago Julie posted on the IBC Research site and I want to share with you what she wrote about reaching her four year anniversary of being alive after being diagnosed with IBC.
“It was yesterday!! I knew it was coming up but I did not look at the calendar until today. I was a little less than 100% aware on the 21st as I had just started a morphine drip. I am on day +5 in a stem cell transplant protocol for Leukemia (AML).
All things being what they are...I am doing quite well! My difficulties include mouth sores, "bottom" sores and my blood counts are nearing the transfusion stage. Not easy but very do-able!
At the last minute my transplant protocol had to be changed and delayed because they retested my heart and found it was too damaged from previous chemo. Instead of 5 days chemo I had one 5hr chemo, than 3 days of radiation (20min each side/2 times a day).
Its hard to know what each day will bring. I know that sometime near the end of November I will be home and happily recovering and celebrating! I also know that I am very well supported in love and I feel safe.
Take care Ladies, you are my inspiration.”
Four days ago Julie had the stem cell transplant, her sister was a perfect match.
One day ago Julie died.
Julie you were really the one with all the inspiration; rest in peace.
14 comments:
This breaks my heart
Jacquie asked me to post this for her.
omg julie
that fucking cancer has taken you away from your children.
i hate the word cancer,rare,agressive and the number 4 for many reasons.
i am so sorry you have lost another friend to cancer renee.
it must be hard not to be scared for yourself.
julie you will be an angel among angels who will look after children as in your writings you sounded like such a great mom.
you will be missed by renee as i know you meant alot to her and to many women in your ibc group.
my heart breaks to your family
rest in peace julie
Jacquie
It is just not fair that this wonderful person should have to go when she is not ready. It makes me very sad that you lost this dear person that you loved so much. My sincere condolences to you and the group.
Love Jeannine XOXO
I feel sick about this. How devastating for Julie and her family. No one should have to leave their little kids behind. Julie seemed like a very excellent person. I hope her kids make it through this tough time with much love and many memories of their mom.
Thanks Renee,
You write so beautifully. I am so sad today. I felt like Julie was a friend, as I feel so many of my IBC sisters are friends, and it is so hard to lose your friends.
So many of my IBC sisters are alive today because of stem cell transplant, and I felt so much hope for Julie.
As I told you earlier Renee, I would so happily trade places with my younger IBC sisters so they could raise their children.
Penny
Penny, I understand only to well. Please take care of yourself and your grandchildren. Believe me, as said earlier, you have no reason to feel guilty for being alive.
xoxoxo
I am so sorry.
Julie sounds she's one of a kind.
My prayers and condolences to her family and to you and your group.
Love Yvette
Rest in peace Julie. Big hugs to family and friends.
It seems like only yesterday that stem cell research was so hotly contested I wondered if it would ever happen. Amazing that they're already using it, is it in the form of a medical trial or is it now a standard form of treatment?
Completely understand the bad feelings that steriod squidge can engender. My best friend has diabetes and they've had her on Prednisone for a while now. Her face is twice it's normal size so it has a massive impact on her self esteem. She said one thing that really helps her feel better is to have a manicure and pedicure every few weeks. She goes to a salon, but I'm sure doing the same thing at home would have the desired effect. Kind of like shaving your legs at the start of summer. Makes you feel more girly and put together ;)
i'm so sorry about the loss of your friend auntie renee. my thoughts are with your group and her family.
Em: I don't know to much about stem cell but I do know her treatment was not a trial. They use it quite often in leukemia. In the States they use it to treat IBC and so many women do so well from it.
Such a hard thing to do.
Love Renee
Ah cool, I'm always curious about medical stuff, particularly breast cancer because it's dominated our family fortunes. Mum's mother auntie and grandmother all had double mastectomys, took me forever to get my mum to go and have a mammogram (she's of the ignore it and it will go away school, even though she used to be a nurse, twit ;P).
Had to laugh when I saw your latest entry, it's always annoyed me when people say stuff like that, which is unfair I guess, but it seems so empty to me. There are definitely worse things to say though, my friend Jess lost her mum a couple of years ago to cervical cancer. At the funeral a family friend came up to her and said "Hi Jessica, how are you? How's Dad? How's Mum?"
Jess said "Erm... Mum's kind of busy right now" and pointed towards the hearse. The poor woman cycled through firetruck red to ghastly grey in ten seconds. I felt sorry for her, but it was such a foot in mouth moment we all laughed hysterically once the shock wore off :P
I honestly don't know what to say. My words won't work, and wanting to give you a hug from so far away is really frustrating.
All I can say is I'm so sorry, for you, my heart breaks for Julie's kids, and her family, and all of her friends.
Not that it's any consolation at all, but I just rang and booked myself in for a breast check. In honour, isn't the right way to say it, but hopefully you know what I mean.
Flossy-p I know exactly what you mean and it means a lot.
Love Renee xoxoxo
** weeps ** "YOU are incredible and cancer has nothing to do with it." And the living must live gloriously to honor those who time was stolen from. All my love, Deborah
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