Team H: October 2011

October is breast cancer awareness month. I drafted this post last weekend when we were in MI for Jay's birthday and really wanted to get it posted before October ended. It's Oct 29th, time is running out!

Knowledge is power. If you're around my age, you remember those great Saturday morning PSA's during your cartoons.

Awareness. I think that everyone in the world is aware of breast cancer. How can you not? Before I was diagnosed with cancer, I thought breast cancer awareness month was great. Pink ribbon products were wonderful ways to support breast cancer research and fund mammograms for others. Plus my favorite color is pink. However, after diagnosis, I became aware of a few things. Some breast cancer survivors hate the color pink, and hate October. For good reason, it's a constant reminder of something that all of us survivor’s would like to forget. After all, who needs to be reminded of their scarred body and the pain they’ve got through when at the grocery store buying pickles? It's the pain we went through during treatment, the agony of sharing the devastating news with our friends and family, the memories we are left with of treatment time, the medications, the terror in our hearts at every day and once a year occasions when the thought of is this the last time I will get to celebrate/be here for this event pops in our heads as it enviably does, the reminder of those diagnosed too late, or those whose treatment didn't work and they are no longer with us, not everyone is s survivor. Only the “lucky ones” survive.

I don't get mad so much at the commercialism of the pink ribbons and I don't want to take that away from the organizations/corporations because my feeling is that something is better than nothing. Plus, you never know what is going to prompt someone to be aware, take care of themselves or not brush off something they are feeling as nothing. Plus, my favorite color still is pink! My concern with all the pink merchandise is what percentage actually goes to cancer research or prevention. Buy pink products, like I do, because I like pink, or I like the product, but I don't buy it thinking I am making a big difference because if I do a little research I am going to see that normally between .05% and 2% of my purchase is going to breast cancer research. If you look closely at what the packaging states, you'll see how much is pledged to breast cancer and then look at that price and count how many are on the shelf. Do a little math and you will be very surprised. Breast cancer survivors, especially those that have metastatic breast cancer, research even more, and have made me aware of the following stat: of the research being done in the area of breast cancer, only 2% is being done to research therapies for metastatic breast cancer.

Which brings me to the real reason I wanted to make this post about awareness. If you feel strongly about supporting breast cancer research and really want to make a difference with the $5 or $50 you'd use to purchase something pink, spend it a different way. Unless you really want the product, then just buy it and maybe think about making a donation to one of these areas Your contribution doesn't have to be big, as I can attest, every little bit helps. Breast cancer research funds such as http://bcrfcure.org/, young survivor’s collation, or call a social worker at a hospital in the cancer department and offer some help. Cash in some credit card points for gift cards to everyday places and donate them to a social worker at a cancer center, The Pink Daisy Project which helps young women diagnosed who are going through treatment, your religious leader, or just ask around. Unfortunately, it is not hard to find someone going through cancer treatment that could use a little help. There is an organization called Cleaning for a Reason, that will clean your house once a week when you are going through treatment. Unfortunately for me, they were at capacity in Chicago, but maybe you can sponsor a family and open up another spot.

During treatment there are a lot of things that you can help someone out with. After treatment, unless you are independently wealthy, survivors spend years digging themselves out of the financial hole their experience created, and then some. Unless president Obama's health care reform sees the light of day, I will not be able to obtain health insurance because of a pre-existing condition. Or, if there is no health car bill I can join with a few other people in Illinois in a group called ICHIP, a pool of high risk people who pay too much for inadequate health insurance, but it is better than nothing, which is the alternative since no insurance company will touch a cancer patient for at least 10 years.

The biggest advice I can give to you to support someone through treatment is the old Nike slogan of “Just Do It!” (Ironically, I had a pink shirt with this slogan on it when I was younger that was purchased at the Nike Outlets in Pleasant Prairie, WI. A little blast from the past...) If you sit back and say I offered to do anything, you are very rarely going to get a call to action. Instead, Just do it. Want to make a meal? Great. Make it. Unsure if it is needed, make something freezable that they can use whenever needed. Don’t like to cook? Fine. If they have kids or pets, offer to help out with them on a specific date. Put together a basket of things you’d like when you are recovering from surgery, not feeling well, or are sick. I received numerous blessings from people during treatment, and one of the things that sticks out in my mind was when someone brought me a bagful of groceries. It was awesome. People were bringing me dinners, which were great for dinner (obviously) and leftovers worked for lunch, but snacks and breakfast were still up to me. A bag full of the staples, milk, bread, lunchmeat, yogurt, and fruit was just what we needed.

Awareness for yourself and in others. It goes without saying, to be aware of yourself, your own body, or encourage your significant other to be aware of their body and take care to get annual checkups, but to also check up on yourself. Learn from others’ experiences. If anything, I hear from people that they are more aware of their bodies, take better care of themselves and have become greater advocates for their health after hearing my story. That makes me feel great. I WANT you all to never have to go through what I have gone through. When I was first going through this process and was waiting for my biopsy results I did a lot of praying and I told God I would gladly take this cancer diagnosis as long as this didn’t happen to my sweet Katie or my nieces. That extends to you. I have never asked why me. Rather I want you to realize how “lucky” you are that this has not touched your life in the way that it has touched mine.

Here's something to be aware of: doctors don't know everything. They know an awful lot more than I do, but they don't know everything and your role as a patient is not to become a computer MD, but to do some basic research so that you can be your best advocate. When I was having my consultation with the surgeon after my diagnosis he told me that all the testing showed no issue with my left side, research was showing radical bilateral mastectomies when only one side was diagnosed were not showing much better survival rates than those who just had one side removed and the other side monitored closely. But I felt strongly that I wanted both side removed now. I knew I could not go through this again. The surgery, the chemo, the radiation, the what if’s; with two little kids. I couldn't turn their world upside down again. They both had to go. He didn't argue with me because he said he once he had a woman he talked out of a bilateral and within a year, she was in surgery again, because cancer had popped up on the other side. We all know how my story ended, at surgery they found cancer in the left side, which had not shown up in any scan, so I was glad I fought and went with my gut feeling and didn't just go on my surgeon’s advice. I was also happy I had a surgeon that was thoughtful and listened to my concerns and was willing to do what I felt was best. Between having James and Katie, I switched ob/gyn doctors and had asked the new one, as well as then old one, if I could please have a baseline mammogram. Both said I didn't need it. I bet now if a young 30's woman with a history of breast cancer asks them for a mammogram, they may think of me and be more apt to allow it. I left it at that. I had no idea that if I wanted a mammogram, I didn't need a doctor to allow me to do it, unless I wanted insurance to cover it. But, a lot of places do free mammograms or have programs to pay for mammograms for women whose insurance won't cover it. I didn't know this, or I may have just done it on my own. I wasn't aware.

You are your own best advocate. You have to be aware. Advocate for yourself. Take the time out of your schedule for yourself, put your health first. My mom is great at reminding me that when they give you safely warnings on an airplane they always say to put your oxygen mask on first, then help others in your party. I didn't do that, and that is precisely why you should.

Knowledge is power. Please learn something from my journey. Ever since I was little if you asked me what I wanted to be when I grew up, I said “A teacher.” Little did I know it might not necessarily have been the classroom teacher I ended up pursuing and bringing to reality, but rather a life’s lesson teacher.

When I was first diagnosed, in April of 2010, I received an outpouring of support, cards, emails, holy water and other inspirational presents. I have never felt so loved! I have a big Nordstrom box of cards, notes and pictures that were sent to me throughout this journey. Because, a Nordstrom box always holds something good! Here is a picture.....

Among those gifts and treasures, were two medals. My Aunt Aggie sent me a miraculous medal, and my cousin Eve sent me a St. Perigrine medal. He is the parton saint of cancer patients. (Now, I'm pulling a Jay... if you want to learn more, here is a link http://www.ewtn.com/Devotionals/novena/peregrine.htm )

Very soon after receiving them, I put them both on a chain and began wearing them. I wore them 24/7, unless I was recieving a test or procedure that I couldn't have it on.

A few weeks ago I woke up and as I was getting ready, I realized that my miraculous medal has fallen off. I was pretty upset and looked all around for it but couldn't find it. I looked all over my bedroom, my bathroom and in the closet where I had put my laundry. Nowhere to be found. I went on with my day and
I even told my mom that I had lost my medal and I was upset. She immediately said that weekend at church she would ask her priest for a replacement one. I thought that was ok, but I still was very upset that I had lost my original one that had been with me through treatment, late night worry sessions, prayers and more. Well, imagine my surprise when I walked into my room a few days later and there, on the floor was my lost medal! Right in front of the dresser, completely in line with my containers of holy water that have sat there for months. I couldn't believe it. I look at that spot on the floor a million times a day. I pass by it a zillion times, on the way to the phone, put laundry away, put jewelry on and off.... it just appeared there. I was so happy to get it back! In the meantime, between losing it and finding it, my mom had lunch with a childhood friend, Rita, and was sharing how I was upset about losing the medal. Rita said that she thought it had fallen off since I no longer needed it. I felt like that was exactly it. I had received my miracle, I didn't need it anymore. It further cemented this feeling when I realized that the week before I had found a penny in the exact same spot. (The penny is a whole other story, here is the short version: when I was growing up and I would find a penny my Grandma Krupa would say it was a penny from heaven. Now whenever my cousins and I find pennies, we think our grandmother is talking to us. And I really have to say, I find pennies at the most needed times....) Anyway, this really may be a story for a few, but I truly believe that I have been given a miracle and I am so happy for the support from friends, family and strangers alike!