Tuesday, March 16, 2010

Goodnight, my angel

We arrived home from Indiana on Saturday, and I have been so busy preparing for a biochemistry exam and my thesis defense that I forgot to post anything new. The hospital called Aunt Becky to let her know that there was no cancer in the surrounding tissue or her other breast, and that the tumor itself was very small and "barely stage one." We do not have an official response to whether or not she will need chemo, but everything seems hopeful so far.

Although this is wonderful news and something I'd like to share, this is not really the reason I signed on tonight.

Tonight is March 16th, 2010, the day that marks the one-year anniversary since my mom was diagnosed with leukemia. It never occurred to me how much the realization that it has already been a year since everything has changed would hurt my heart so much. I feel nearly the same as I felt the night we were given the news. My head hurts, my eyes feel heavy, and I feel completely hopeless. My poor girl. I just can't stop thinking about her and how sad I am for her. I'm not really sad for myself anymore, I just feel numb now, about most things.

What I wouldn't have given for it to be me. Why did it have to be her? Why is everyone I love so dearly being taken away from me, and why do I have to watch them suffer? I feel like all the people I love have cancer. I feel like it's me. I don't know why. But I do. Maybe it's me. Why can't I just have it so they don't have to? I would gladly take their place.

I would give up everything to bring her back. She was my best friend, and my most favorite person on this earth. Everything she did was completely and utterly precious, from the way she laughed to the way she tied her shoes. Her little, perfectly white shoes. I wish I had them so I could lay with them right now.

This week in Indiana, we were looking at pictures on Aunt Janny's camera. She has a video saved of mom sending a message to our doctor, who we love very much and is practically a member of the family. Mom is up in the Cleveland Clinic wearing her hospital gown and her favorite sparkly ball cap, the white one. Aunt Janny, in the background, says "Go ahead and talk," and mom smiles and waves and begins to talk into the camera. Her smile did so many things to me that night that even now I'm not sure exactly how I felt. I was happy to see her face, to hear her voice, to see her move, and I almost felt like she was really there, like it was all real. That smile. The same smile I watched spread across her face every time she opened her eyes and looked at me just hours before she died. I felt sad that I associated that smile with her dying, rather than all the other millions of times she smiled in my life. I cried, and I watched it three more times.

My heart is very sad, very heavy tonight. I feel like I have taken one step forward and two steps back. The pieces that I finally began to repair feel damaged again. What I wouldn't have given for it to be me.

Tuesday, March 9, 2010

WTF

We brought Aunt Becky home this morning about eleven o'clock. When we walked into her room, she was wide awake, her eyes were bright and happy, and she was making jokes as usual. My cousin Sammie was in trouble with his boss, who requested "proof" that his mom was actually having surgery, for calling off of work last night, which is ridiculous, and Aunt Becky yelled, "Let's send him one of my boobs!" and then laughed hysterically. She cracks herself up. She's crazy! But happy, and for the most part, healthy.

Her surgery lasted about five hours, and even in recovery last night, she was cracking jokes and telling everyone she was fine. This morning, before she left, the nurse asked her to rate her pain, and she claimed it was a "one." I think her attitude and happy spirit helped to calm down Uncle Sam and Sammie, and you could see them physically relax as they become more comfortable with the situation.

Since our family has not had good news in a long time, it was nice to finally receive some. She is negative for cancer in her lymph nodes, which is wonderful news because cancer in the lymph nodes increases risk of it spreading. Her BRAC analysis was negative, as well as her Her2Nu test, which is a genetic test for a defective gene that makes the cancer more difficult to treat. Aunt Polly's cancer was Her2Nu positive. Mom's was not. We are still waiting to hear if she will need chemotherapy or not, which all depends on whether or not the pathology report reveals any more cancer in her tissues they removed yesterday. Other than that, all is well.

I just took a short break to empty her drainage tubes, which help her body rid of the blood and fluids while she is recovering from the trauma. She has two on each side, for a total of four tubes. On the end of each tube is a ball-shaped reservoir that holds the fluid. While she was at the hospital yesterday, a special oncology nurse brought Aunt Becky a special camisole that has pockets for each reservoir, pockets at the chest for implants, and it opens up in the front with a Velcro strip. It is the neatest thing I've ever seen! It is so clever and so perfect for someone who has had a surgery of that nature. What I did think was crazy, though, was that insurance only covers one camisole, and if you would like to purchase another, they are $60!

I do not understand why things that are so important for people that are in need of medical supplies like that are so expensive. It makes no sense to me. I don't understand how people without medical insurance can afford to be sick, especially with something as serious as cancer. I remember my mom telling me that she requested an itemized hospital bill when she was first diagnosed, and one of her chemotherapy infusions...brace yourself...was a little over $10,000. Of course, that was without insurance, but still. $10,000. For a bag of chemotherapy. Do you know how many bags of chemotherapy my mom went through? During one round of chemo, which lasted about a week and a half every month, she easily went through 4 bags a day, at 10 or so days...that's 40 bags of chemo my friends. 40 bags of chemo at about $10,000 a piece. Drum roll please. That's $400,000. In a week and a half. And that's just chemo.

Let's not forget they charge you for everything from the telephone in your room to the non-slip socks you're wearing on your feet.

And these things are a necessity. For life. Well, not the non-slip socks, but chemo certainly is. What is wrong with this picture? I feel the same way about vegetables. Why do we pay more for food that is grown in the ground, in the soil, with some water, add in a little sunlight, and you're paying $3.99 per pound? But! A box of processed, artificially colored and flavored snack food that is nothing but sugar and junk you can buy for only 99 cents. 99 cents!

I just don't understand. Things like vegetables, fruit, organic, non-processed items, chemotherapy, cancer wigs, items to help the body heal faster, should be accessible and affordable to everyone, similar to the prices of all the pizza and pop and chips and junk that require more processing than someone getting a bleach-blonde hair weave...and that are making us fat, giving us cancer, diabetes, heart disease...the list goes on and on. I am not some advocate for an all-organic diet, but I am in favor of going back to basics and reversing this ridiculous idea that JUNK is less expensive than things that are either 1. found in the ground, made by our earth or 2. necessary for a healthy life. What is wrong with the world?

There are so many things I will never understand, from the question I just posed to why my profession is not more valued in the health industry to prevent so many of the diseases I have discussed in this post to why so many of the women in my family have had to hear their name and "breast cancer" in the same sentence. I will never understand. I can ask all the questions I want, which I'm sure so many other people in the world ask right along with me, but we will probably never know.

We have it all backwards. Our insurance. Our health care. Our government. Our food industry. We have it all backwards, putting importance on things that are NOT important, by any means. I am not one to follow conspiracy theories, but I do know simple facts that many others in our country know, and I am completely baffled by them.

Why do we feed our cows corn instead of grass and let them breed E.Coli in our food supply?
Why does one bag of chemotherapy cost more than a lifetime supply of groceries filled with processed, artificial junk?
Why would our insurance rather pay for open-heart surgery than let my profession come in and prevent it before it ever happens?
Why are healthy, natural foods so expensive when they are the types of foods that prevent disease and promote health?

These are just a few of the things I don't understand, and I'm sure there are many who are on the same page with me. I'll get off of my soapbox now. I'm not even sure what provoked such a tangent. But, I said it. And I feel better, in case you were curious.

Point: Our world is crazy. We can fix it if we try. Aunt Becky is fine, sitting at the dinner table, ready to eat, and I have to go!

Monday, March 8, 2010

The God Jar

Tonight is my first night in Indiana with my aunts, and we just finished visiting and getting ready for Aunt Becky's surgery tomorrow morning. She loved her bear and her new PJs, both of which she decided she's taking to the hospital with her tomorrow. Dinner was an event filled with her favorite Ohio treats: Pizza Oven pizza, Golden Crisp potato chips, and finished with Heggy's chocolates. They have all gone their separate ways, preparing for our early start tomorrow morning. I, as usual, cannot sleep. Neither can Aunt Becky. She is in the family room, laying on the couch and watching TV.

If you do not know me or my family very well, we typically handle these types of situations with humor, which more often than not, is usually pretty inappropriate. Tonight, boob jokes were flying. As part of our dessert, Aunt Becky's friends from work made her a boob cake, literally. A huge cake shaped like two big boobs, anatomically correct except they were hot pink. At one point, Aunt Becky handed her son Sammie something, and he accidentally brushed against her chest. He laughed and apologized for "accidentally grabbing her boob" to which she replied, "Well, that was your last chance!" and cracked up, laughing hysterically at herself. This was basically how the evening continued. Tons of eating and laughing and boob jokes.

We are headed to the hospital very early tomorrow even though her surgery does not start until about eleven. She only has to stay in the hospital overnight (only one night after a double mastectomy and reconstruction!!!), and then she will be home with us again on Tuesday afternoon. I am not sure how long we are staying, but it sounds to me like we will be here until the end of the week.

Tonight, we had our very own private "sister" moment in the guest bedroom when we gave Aunt Becky all of her presents. Of course, we gave her her PJ's, but we also gave her the bear, which was very special. She loved it, and surprisingly, she didn't cry when she opened it. Inside the gift with the bear was a small clay jar stopped with a cork. It had a pink ribbon on it and it said "God Jar." It was my Aunt Polly's. So, she got her guardian angel and a little faith tonight. She seems a little anxious, of course, but she is in very good spirits and ready to "get it over with."

I have thought about my mom a lot today, especially during our five-hour drive on the way here. There was a lot of time to be quiet and think, and I looked out the window at all of the farm land and trees and sunshine and thought about being in the car with my mom on so many similar trips before this. I thought about how different things were and how happy we were together before she was sick. Being here without her makes me very sad. This whole situation makes me very sad, really. How quickly our lives can change.

Interestingly enough, my family has been tested for the BRAC analysis, the test they do to determine your genetic risk for breast and ovarian cancer. My Aunt Polly, and now my Aunt Becky, have both tested negative. I am very curious to know that if it has been determined that we do not have any type of revealing, pre-disposed gene in our family, how have so many of us had breast cancer? My grandma, one of her sisters, my Aunt Polly, mom, and now Aunt Becky. It makes no sense, and all I can come up with is that we have some seriously bad karma in our family being paid forward. Maybe someone a long time ago was a slave owner or a Nazi? If it is not genetic, why else would so many of them be diagnosed with such a deadly, harmful disease? Maybe someone from our family was a member of the mob or the other shooter on the grassy knoll? I do not know. I will never know. I will never understand. Ever. But, it is our reality. And not even really mine, I am more just a spectator watching it happen to everyone else and I am not able to do anything but stand here, completely overwhelmed and useless. It is very hard to feel like you can do nothing to help. What I wouldn't give to be able to change the situation.

I am not an overly religious person, and I often keep my beliefs and feelings and faith to myself. Oftentimes, I feel people have extremely strong feelings about these types of things and do not, sadly, know the difference between simply talking about their ideas and preaching. Or forcing opinions down others' throats. Or being judgmental. Or hurtful. So, I usually keep my opinions to myself for those very reasons. I do not know what a God Jar is for. I do not know if it works. It was Aunt Polly's, and she is not here anymore. Mom never had a God Jar and she is not here anymore either. I am not sure if it really represents something or if you are supposed to fill it with something, like maybe a penny for every prayer. Even though we were giving it to Aunt Becky, it helped kindle a small reminder in me, one that has been lacking for quite some time now. Keep your faith. It may be private. It may be small. It may be lost. But no matter what, try to find it. And use it. And maintain it. I do not have a God Jar, but I think, no matter how small and silly it may be, it can remind us that we must have a storage of faith on hand, just in case, for situations like these.

Not everything ends the way we want it to. Tomorrow marks the five month mark after my mom's death. But not everything has to end that way.

Saturday, March 6, 2010

Chemo baby

I am leaving for Indiana tomorrow with Aunt Janny. Aunt Becky's surgery is on Monday. I have been packing, and I found our family's chemo baby. A chemo baby is a type of baby doll for chemo patients to snuggle while they're getting a chemo infusion and when they're sick afterward. Typically, a chemo baby is supposed to be passed between chemo patients as a way to connect them and to pass on courage and strength. Sadly, since so many of our family have had cancer, we actually have a chemo baby that stays around.

I can't remember exactly where the chemo baby came from but if I remember correctly, she was made by a woman's group at a local church. She's very soft and snuggly, perfect for hugging and squeezing during needle sticks, chemo infusions, and the recovery period afterward. Her face is very generic, with a smile and bright eyes with long eyelashes stitched above them, and she is dressed in a pink onesy with feet and a bonnet. She's very long, about length of a pillow, which is perfect since she's supposed to be the perfect size for providing comfort. Attached to one of her feet is a guardian angel medallion.

Aunt Polly was the first to have the chemo baby, and I believe she was a gift from a woman of the group who had made her who was familiar with Aunt Polly's diagnosis. Aunt Polly had her for only about a year, and then passed her on to mom. Mom had to give her back to Aunt Polly when her cancer came back, and then she was passed right back once mom was diagnosed with leukemia.

We are taking Aunt Becky food to stock her fridge and freezer to easily feed her family, and we are also taking her new PJs and a bear similar to the one my aunts had made for me for Christmas made out of my mom's clothes. The one for Aunt Becky is made out of my mom's and Aunt Polly's clothes and has angel wings on her back. We will also be taking two of her favorite things from Ohio that they do not have in Indiana: Pizza Oven pizzas and Golden Crisp potato chips. Finally, we will pass the chemo baby on to her new owner.

Even though chemo babies are supposed to be passed among cancer patients, regardless of family or relation, ours will stay with us. She has seen too many of our struggles and tears, and she has spent many hours with two of the sisters, and now she will begin her journey with the third sister. She may just be some silly doll to the outsider looking in, but for us, she carries many memories and an innumerable amount of strength, hope, faith, and courage to be passed on to the person who needs it the most.

Wednesday, March 3, 2010

Surprised? No, not at all.

It has been so long since I have written that I'm not even really sure what my last post was about. A lot of things have happened since then. I moved out of my house and into an apartment with my fiance, which was a whirlwind, and a little unexpected, but nevertheless, it is done. And, after some getting used to, I really enjoy it and have realized how much I have missed myself, if that makes any sense. I have spent a lot of time by myself because Adrian works so much, working nearly 60 hours in the six days after we moved in. It has been nice decorating, organizing, looking through old boxes, doing laundry, and sometimes just sitting and being quiet. I do not feel cluttered or lost anymore. I still am on the search for a job, and I am wondering if I was not meant to have a job during this time in my life. I am starting to be convinced that I am just meant to finally relax, regain myself, work on my thesis, focus on my last biochemistry class, and enjoy myself in my new space with my best friend. Maybe I am supposed to be home, to start to really feel right again. And I am starting to feel right again.

So many posts I have written in the past saying things like "I'm starting to feel better," when all along, it was mostly just a load of shit, just trying to convince myself that I was really feeling better again. I know now, since I am in a healthier environment, away from home and memories, somewhere where I can start fresh, that I really am starting to feel better. I feel different. It is not forced. And I will not allow it to be forced. I still have sad days, especially when I am by myself and I let my mind wander. But for the most part, I feel as though my feet are becoming more solid underneath me.

So, this next bit of information, I'm sure, will diminish it slightly. A few days ago, Adrian and I went over to Aunt Janny's house for dinner. We were all finished and cleaning off the table, and I reached for my plate, and she said, "Why don't you hang on just a minute." She pulled out the chair beside me and sat down. I stood there, very still, knowing what was coming. I have had many moments like this in my life, especially in the last year. "Come sit down by me, we have to talk about something." I didn't move, I stood there looking at her, wondering what it was she had to tell me that required me to sit down.

"Are you going to ruin my life?" I asked her. "Is this going to make me cry?"

"It might," she said. "Aunt Becky had to go get an MRI, just a routine thing they're trying now for people with a history like ours. They found something. It's early, there's only one spot. But just because of our family history, they're going to do a double mastectomy and maybe even take her ovaries depending on some more test results. She'll need chemo, and maybe radiation too, but they're not sure yet."

Surprisingly, I did not cry. It did not ruin my life. I just sat there. I almost felt nothing. Almost. But I did feel a little something. No surprise at all. This type of news, this type of situation, is so standard for our family, I was not the least bit surprised. Mostly numb.

I asked a lot of questions, and we formulated a plan to drive to Indiana, where she lives, the day before her surgery, which is less than a week away. We are going to cook and and take care of her family while she recovers, and since we are veterans at this type of thing, we are going to try to make things a little more "normal" and "comfortable" at their house. My Uncle Sam and my cousin Sammie have not really had to deal with anything like this before, luckily, as they live in Indiana. They could see Aunt Becky suffering from the stress and then loss of two of her sisters, but living at a distance helped them stay far enough away to really experience it. So, Aunt Janny and I will hopefully be able to ease some stress and let them recuperate after this type of news, while we do all of the daily chores and things like that. After news like that, a brain and a heart need to stop and let it sink in, not worry about small details like cooking and cleaning and grocery shopping. My Aunt Rita is in Florida for the winter, and Aunt Becky has convinced her she needs to stay there and relax as best she can. We'll see if that works.

My cousin, Aunt Becky's daughter, Theresa, is a marine and spending her third tour in Afghanistan. She is due to come home very soon, possibly the day of Aunt Becky's surgery. Theresa does not know yet.

I am finding that instead of stress eating or working out or laying in bed depressed and nonfunctional, I stress bake. This is new for me, and I'm not sure if it is a truly new development or if I have always had this type of defense mechanism but could never put it to good use since I didn't live in my own house. Since I have found out, I have made pierogie casserole, apple cinnamon muffins, spinach dip, peanut butter cookies, curry cheese crackers, cucumber raita, seafood stew, whole wheat bread, a fruit tea loaf, and the "Red Lobster" garlic cheese biscuits. I cannot stop. I need help.

Thank God for Adrian's co-workers, his appetite, and my freezer. We will get through this.