I wrote this almost a year ago, but decided to just share it now.
What a kick in the gut! My sister just told me she has Stage 2 infiltrating lobular carcinoma. Beast cancer. Funny, I just typed beast cancer not breast cancer. Not sure why that is funny, but it kind of is. We sat down with my mom over some chili cheese fries and a coney dog and she dropped the bomb.
I start to cry. She tells me to stop or she will start, with tears in her eyes. My mother stares at us both unable to speak. My sister assures us both that she is fine. She told the doctor that he "made her day",because he actually gave her a diagnosis. I am sure that made his day. He gave her something tangible that explains why she has felt so poorly for so long. Now she can fix it. She can cut it, burn it, radiate it. Anything to help her get the crappy feeling out, so she can feel better.
She explains about three types of hormones for which they are still running tests. Progesterone, estrogen and something with letters and numbers. HER-2, yeah that's it, I think. I can’t keep up with the technical part, as she speaks.
She says the results of all these hormone levels need to come back with two positives and one negative and then she should have a good success rate. We won’t find out until next week because the doctor is going on vacation. Really? Really??? Can't all cancer doctors just work 24-7 so people don't have to worry or wonder? They talk about “success rate”. I hate that term. It's like when they call a pregnancy "viable". Really? Must you?
So now I must plan. I am a planner. I need to get the facts on the situation before I can process or accept it. I need a plan so I can figure out a way to be helpful. I am nothing if not helpful in a crisis. I am overbearing. I am obsessive. But gosh darn it, let me just help! So I am waiting for the surgery. Is that what comes next? When are we talking? How will they get rid of it? Where will my precious nieces sleep the night of the surgery? Will there even be a surgery? See? Here comes the obsessive part... Slow down, Shari.
My mother has her iPhone and is now frantically reading out loud to us as she learns about all the information on "www.y-me.org". She likes this website for the name and the simple answers it gives. My sister is on her smart phone, reading statistics out loud over the coney dogs and chili chees fries. She is saying in 2008 it was the second most common type and in it had an 88% success rate, so surely it must be higher now. Please let that be true. I tell her they just had the three-day breast cancer walk last week in our area, so there should be tons of money pouring in for a cure. What the heck? That was a stupid thing to say! As if that money goes straight to her doctor and he will hurry her "success" along faster. But oddly enough she looks me straight in the eye and says seriously "Oh, that's great!" I guess any positive thoughts are helpful at this point.
We talk about a free boob job. That might be a perk, she says. Not really free, but I am sure you get the point. It's all just really too much to take in. I am scared. I don't want my sister to die, and all indicators so far from what she is telling us say that she won't, thank God. I don't want my nieces to grow up without the one person who will guide them to be great women. I look at the familiar moles on her arm as she and my mother dig deeper into iPhone websites. I tear up again. I love her. She doesn't deserve this. What will happen next? How much pain will she have to endure? How is this happening! Is it really happening? I always knew it would. But now? Right now? Really!? This sucks....
Maybe I should start a website called www.y-her.com????
The Beach -a Week Later
So here I sit on the beach, on vacation. My sister is inside our rented cottage tending to my fever-stricken niece. She should be visiting her doctor right this minute following up on last week’s news. But she decided to skip it. Just like, that she decided to skip it. One last week of freedom. Some might say no, go get yourself looked at so you will know what you are in for, but not my sister. She calmly, patiently says the heck with it. "I will just wait till next week." Funny thing is I don't blame her. Not sure if I could be that calm, but I do remember during my last in-vitro fertilization feeling the same way. Just not wanting the news, especially if it was bad. Hoping time would heal all wounds. No one can predict, prepare or protect themselves from the stiffling satin that could be slipping quietly over us each and every day. I imagine cancer like satin because cancer just gently glides over you before you ever know it. Just like a satin robe. Or like sunburn on a breezy lake. You eat your blueberries and kale. Your whole grain bread and decaf non-fat lattes. But really, you just never know when it will glide right into your cells. This is the thought that scares frozen.
I think about cancer as many times as men think about sex. It is my greatest fear except my children dying. My closest friends know this about me and some understand and live under the same cloud. But others just think I am weird. But it consumes me. Most people may not think about it at all. For me, it creeps into my thoughts several times a day. I eat things or don't eat things, I take vitamins or not, so I don't get cancer. And here my sister sits with it. My worst fear realized. I feel stifled by it and want to run and hide. It's like putting a person afraid of heights on a plane and saying "JUMP!!!"
Truth be told, I am so frightened about it that I want to stop this vacation and drive her to the doctor’s office myself. I need to know the plan. I need to know what's next. I need to know how bad it is. How deadly. But it is not about me. And I cannot make it about me. It is her battle and her struggle, her reality,and if she wants to put her head in this sand on this beach for one more week feeling normal, then I must sit here next to her talking about how we will organize our closets once the kids go back to school, as if that is the most important topic of our day.
I want to be amazing for her. She is the most giving person you will ever meet. She has sacrificed so many things in her life for so many people. But one person she has never sacrificed for is herself. I hope I can be as good to her as she is to others.
The Prognosis and the Plan - a Week Later
The good news is she has "the good kind" of cancer. She is ER and PR positive and HER-2 negative. The doctor said the tumor is small, only 8mm, and that they want to run some more tests to know what they are in for once they are in the surgery. She and my brother-in-law went to the appointment and conferenced in my mom and me in their car on the way home (my how things have changed). They were chipper. They were laughing and happy. Hopeful and relieved. The doctor said it was a disease not a death sentence. The nurse told her, "This is what we do". Basically, just sit back and enjoy the ride was kind of the way they put it. The doctor also told them that there was something called a flap surgery,which meant she could have the double or single mastectomy and then he could take fat from her stomach and put it in her boobs as the reconstruction. It would be a tummy tuck and boob job all in one. She was actually excited. Ok, so what to worry about? Hmmm, doesn't seem like cancer is as bad as I thought. We shall see. The other options are lumpectomy and single mastectomy. The doctor said let’s double check to make sure it really is as it currently seems and let’s do some genetic testing to look for the "breast cancer gene". All of this will provide more information as the basis for upcoming decisions. The decisionon which surgery will be totally up to her. As she tells me this, the doctor made it sound empowering. Maybe not! He may be playing “tag” and saying "Not it!!" Seriously, are doctors somehow hesitant to give an opinion on course of care? Are they so scared of being sued that they have lost the main point of their job? Have they simply become test orderers and results readers? The whole thing is a mess. At scary times like this, one doesn't feel like making decisions on their care. They did not go to medical school. Just man up and give me your best educated guess. Enough already! Sorry, I digress...
One Year Later (June 2012)
Ok, this is the point where I changed my mind a year ago about blogging my sister's breast cancer. As she went for tests and MRIs, I just felt like I would be exposing her for my benefit rather than hers. My intentions in the beginning were to honor her by helping others out there maybe get through similar circumstances. But as the chemo started and the results came in, it suddenly got very personal. It was her cancer and I felt like a slimy reporter for wanted to expose her struggle.
I apologize if you as a reader feel let down. I just felt protective over her struggle and decided to let this journey be her own.
But, now we are a year out and I can tell you some good news. She was did amazing with a double mastectomy, a port, drains, three rounds of chemo, hair loss, wigs, expanders, a second scare and a second surgery to get rid of what turned out to be just fatty tumors (thank God). The next step is to go back in three months to make sure the cancer is still all gone. I am on purpose not writing anything about being "cancer-free" or "in remission" or even "it's over". I do not want to jinx her. So I will simply say "She is truly amazing and doing well so far!"
I took pictures along the way instead of writing. My nature is to be a chronicler. I like to record things to help people relate to each other. So, even though I respectfully stopped writing, I couldn't help myself but to take pictures.
Here is the story in photos.
This is her during her ninth poke to try to get IV in her "terrible" veins.
Last week, as we dyed her new hair pink, I got brave enough to admit that I originally wanted to blog about it all. She said "Why didn't you?" I told her about the respect and slimy reporter feelings I had. She said, "Oh, don't be ridiculous! If I can help people through all of this, it will make me feel like it was all for some reason. Go ahead!"
So, with permission, I am sharing the pictures of her struggle. I hope it helps all of the people affected by breast cancer. If you are also going through this, my sister and I are sorry for your struggle.
Last week, my sister came over and pulled a Barbie doll out of her purse. I started laughing harder than I have in a long time when she told me my five-year old niece cut the Barbie's hair and gave it to my sister and said "Look mom! Breast Cancer Barbie!!" My sister brought it over and said, "Let's put it in the blog!"