my sister's breast cancer

 

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 at lunch before her first chemo. 

This is her at doctor's office before first chemo.

This is her during her ninth poke to try to get IV in her "terrible" veins. 

Finally, got it! Phew! Ever see anyone so excited to get chemo? This is a true picture of her character throughout the entire beast cancer process. 

New wig!

Hair growing back! 

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!"

 

Getting "lost" in the woods!

My mother-in-law is a unique lady. She and her parents came over on the boat from Italy to Canada seeking greater opportunity. Her parents didn't speak English and she was three years old. Since then, she has been super-productive as a nurse and an attorney, while also doing an exemplary job as a wife, sister, daughter and mother.  She has done her duty in looking after her parents, her Type 1 diabetic spouse, her three sons and a plethora of horses and stray dogs and cats. Her boys are all smart, self-sufficient, talented and confident.  They are true family men, they know right from wrong, they work hard first and then they play hard. They are the kind of men I want my boys to be. So, even though my mother-in-law starts many conversations with "You should...” I know that this is done out of love and tons of life experience.

 

To be honest, all that advice was a little hard to take when I was a newbie in the family, but once I realized that love and good will were the backdrop for every comment, I settled in, opened my ears and my heart and listened to her. I still do. My style of mothering is a combination of her "tough love for the greater good" and my own mother's "love no matter what". These two amazing womens' wise approaches are helping guide me to raise healthy, happy and well-adjusted kids. I am fortunate to have such great role models.

 

One of the best pieces of advice my mother-in-law gave me so far came in the form of a book. I was actually on bed rest waiting for the boys to be hatched and she gave me a book called "Last Child in the Woods - Saving our Children from Nature-Deficiency Disorder", by Richard Louv. 

When I got the book, I instantly liked the title. It spoke to the love and respect for nature that are a key part of my personality. I am a girlie girl, but my attraction to the animal world has been a constant since I was a little girl. The smell of a forest is my favorite smell (besides The Sweet Pea fragrance at Bath and Body Works!) I am in awe of the way an ecosystem works. Michael and I spent our honeymoon in the rainforest of Costa Rica. His love of nature goes even beyond mine! It seems only natural that the apple(s) shouldn't fall far from the tree(s).

So, after I read the first couple of chapters while on bed rest, I was convinced! Above all else, my kids were going to be in tune with nature. The magic that happens when you are in a forest exploring is something I wanted them to feel and discover. Now that they are six, I am not sure if their own love for nature was due to nature or nurture (pun intended!)  

Even as babies, I dragged the out on the trails, beaches and rivers! 

Zeke loves all of the inanimate objects that exist in nature. He is truly in his element when he is with rocks, sand, dirt or water. He becomes calm and gets lost in the uniqueness of each object. He is a visual learner, so he takes it all in while he holds each rock and squishes mud or sand between his fingers and toes.

 

Don't make fun of the ridiculous tank top. It was mine and all I had to hide some of the sun. Obviously a futile attempt. Give me a break, I had two, hot two-year olds on the beach all day! 

Rocco is more externally sponge-like in his learning, and his preschool teacher says he learns best when in touch with nature. He loves animals, mostly the ones without fur. Strange but true. He has always been enamored with frogs and toads. 

Here he is actually touching his first toad! I know, I went right to the salon after the trail to chop that hair, don't worry...

 

Lucky for me or lucky for them, I love nature and so do they! So it all works out.

 

On Sunday, I took them to a river and then we walked a trail to a swamp. Here are some pictures and videos from our day.

 

Click here for video #1

Click here for video #2

Isn't it truly amazing when you get a child into the woods to be one with nature?  They just kind of melt intothe scenery. Have you ever noticed how your child just gets calm on a beach when he/she plays in the sand? I swear nature is the best babysitter. It stops the "Moms!" and the "I'm huuuungrys!" It stops the health problems from coming when they watch too much TV.  So, I think this summer you may see a lot of blog posts from me reporting from the forest or the riverside. I was getting a little nervous that I wouldn't be able to find the time to collect any thoughts to blog about while they were both home and in my face all day. But, I think I will take them to the woods, let the trees, rocks and creatures babysit them while I sit beside them taking my own moment to write. I will have to check out the wifi signal at the swamp!

Send me your favorite story of your child being one with nature! Just press the word comments below and share away! 

How does Zeke do with all this diabetes stuff?

Last night before bedtime, when I checked Rocco's blood sugar and reached for his pump to give him insulin, I noticed that Zeke was hanging on my shoulder watching. Not only watching but actually looking and commenting.  "Uh huh, 213 blood sugar, uh huh, zero carbs, yep, 0.7 units, yep..." These were his comments as I pushed the buttons. I realized that he was learning. He is a visual learner, which means once he actually sees something, it sticks. He usually remembers it.

 

Then, as I put them to bed and walked downstairs, I wondered, as I often do, how all this diabetes stuff is affecting my non-diabetic Zeke. It is natural to focus on Rocco and how the experience of diabetes is affecting him.  It is easy to be consumed by the pain Rocco sometimes feels. That pain is physical and visible.

 

However, it is more difficult to focus on what Zeke feels. It is so hard to sink my teeth into his pain or compassion he may feel for his brother or himself. I know this blog is mainly about Rocco and the disease he and I live with every day, but what is going on with Zeke might possibly be more interesting.

 

When I asked my husband and my mom to describe how they thought Zeke was affected by Rocco's diabetes, they both said "fine I guess". I felt the same way. 

You see, Zeke is a simple kid. He doesn't carry around a lot of heavy emotions or even needs. He likes simple things and has appropriate simple boy thoughts. His integration into a diabetic lifestyle was seemless. He makes it easy for us all to care for Rocco. Only once he said " I wish I had diabetes so I could get all this attention". I felt terrible so I said, "oh, buddy really?". Then he looked up at me with a devilish joking grin and said "AND ALL THAT CANDY!!". Then he laughed a silly laugh. Stinker! 

One time, when the boys were three, we needed to give Rocco a shot with a syringe. Because we almost always use his pump, We hadn't had to do this for a while. But it was apparant that both boys remembered the trauma associated with a shot. Even though we tried to hide the needle, Zeke saw it. He yelled at Michael, who was preparing the injection, "Don't do it, don’t you hurt my brother!" He was very angry, but he was only three and he knew couldn't defy his dad, so he grabbed a blanket, covered himself up in it, laid down next to us and cried. It was truly heartwarming and gut wrenching.

 

From the age of two through five, Zeke had this uncanny habit of acting goofy at bedtime when Rocco was low. This goofiness would keep them both awake in their room. When we heard them giggling and acting silly, this would alert us to go to their room to check things out.  Sure enough, Rocco was usually low.  We thought nothing of this at first, but once we noticed this pattern, we were truly amazed. Was it a twin thing? Was Zeke trying to tell us something through his goofy behavior?  Whatever it was, it made us wonder how much Zeke knows. How much does he understand about what’s going on with his brother’s diabetes? And what does Zeke think about all of this?

 

Finally, there was the time we went skiing when the boys were four. They had spent the day in ski school and then playing with their cousins. They were exhausted. When we put them to bed that night, Zeke was mumbling half asleep as he settled in for the night. Normal kids often babble, so we didn’t pay much attention at first. Then, Michael and I honed in on his words, and he was babbling blood sugar numbers- "If he's 242, he's high, if he's 346, he's high, if he's 52, he's low, if he's 120, he's perfect..." it went on and on. He didn't know we were listening. It was amazing to hear him get all the highs and lows right. It was then that I realized that Zeke had diabetes too. Not physically, of course, but through some kind of strange osmosis.

 This little guy has seen and heard it all. Every poke, every port change and every counted carb. He experienced everything that diabetes had to offer except the physical parts of it. He was the punching bag, sometimes literally, when Rocco was high and feeling grumpy, often taking out his frustration on Zeke. On the flip side, when Rocco was low, Zeke finally tasted ice cream, fruit snacks or juice because Rocco needed some carbs!

 

When we got Rocco his pump, the boys were two. The hardest part of the decision to get it was how we would keep these two-year-old busy-body, wiggle worms away from the pump controls. It was electronic, it had buttons, it had a cord, it was attached to one them!  We put the pump on Rocco for the first time and the boys had one of their wrestling matches the next day. I was the mother bear overseeing the wrestling cubs. My fear was that one of them would rip it out. But nothing happened - nothing. They just seamlessly worked around it as if it were a shoe or a watch. And this has been the case ever since. How did they know how to respect it?

 

I couldn't help my curiosity so yesterday, I asked Zeke, "What do you think about Rocco having diabetes?" I wanted to keep it vague so as to not lead him to his answer.

 

He simply replied, "It’s pretty cool."  "What do you mean by cool?” I asked.  "I mean I am starting to understand it now. Like, if you’re high, like 300, you want 0 carbs and you need some insulin. But if you’re low, like 60, you need to have some carbs. But if you’re perfect, you don't need any carbs or any insulin to try to stay perfect."

 

I think he was trying to say that the process or the science of diabetes was cool, kind of like a puzzle, now that he understood it.

 

Then he said, "If I had it, I would die!"  I could tell he meant he wouldn't be able to handle it. I said, "No, you would be just as good at it as Rocco is."

 

It may be many years before I truly know how Zeke really feels or how he has been affected by it all. I am sure I will find out when it's "bring your mom to therapy" day at his therapist's office! 

I only hope and pray that I am being as careful and as genuine with him as I try to be with Rocco. Having twins one with diabetes and the other without sure can throw a girl for a loop, I'll tell ya.

Sometimes, I let Zeke check Rocco and give him insulin. I go with the theory of being included in anything always makes you feel special. He likes it and takes the job very seriously. However, they usually giggle through it!