Sandi's journal - an American experience
Sandi shares her breast cancer story with courageous honesty.
"You have a very rare and deadly form of breast cancer." Huh? What did they mean? Isn't breast cancer all the same thing? I'm mean, if you have breast cancer isn't it the same breast cancer anyone else has? What makes mine so rare and deadly? I didn't realize there were different strains of breast cancer. And even stranger yet, how can I have breast cancer where there is no lump? The doctor went on to explain that I was at a Stage 4. I didn't know what this meant either but he seemed pretty serious when he said it.
I ran home that day after seeing three different doctors, including a surgeon, and got my laptop out to see if I could make some sense of what had been said to me today. I have a really difficult time absorbing what is said to me when I am in panic mode. The first thing I look up is breast cancer stages. I need to know where I am...am I stage 4 of 10? What about stage 4 of 20? I needed to know. My heart was broken in a million pieces, stage 4 was as bad as it gets. I remember sitting at my lap top just sobbing. The stories I was reading were so terribly sad and upsetting.
A week later my husband took me and my mother to the University Hospital in Madison, Wisconsin where they have a world-renowned breast cancer clinic. I could not believe I was getting in so soon! The mood in the car was one of excitement! We were going to get a second opinion from not just any doctor...we felt as though we were going to see the Wizard of Oz and he was going to save my life! I was going to be okay! I just knew it!
So much was said during that visit, again, much that I didn't understand. I'm a smart woman so my lack of understanding was due more than anything to fear. What I did understand loud and clear was when the doctor made the statement that I had about six months left to live. Once this comment was made, I heard nothing else. It was the noise that was heard around the world, above all others. It just disconnected me. The remainder of our visit was just words...one word that ran into the next but made no sense to each other. The mood in the car on the way home was considerably less exciting than it had been on the way in.
I think my mom and I cried most of the way home on the 45 minute trip. My life...my life was over. How can this be? Over a damned cancer I never even heard of before. This was certainly the all-time low of my life, each new day taking me to the end. I cried most of those early days. I could not fall asleep at night because I didn't want to wake up a day closer to my death.
Five years later, I am still undergoing treatment. It's been a miracle that I have lived beyond the six months I so cherished to begin with but it's been an incredible battle. I have been on numerous "cocktails" of chemotherapy having as many as six different types in a sitting lasting as many hours. I've been on chemo for as few as four months and for as long as 11 months and counting as is the case currently. This latter, by the way, has been hell on earth. I'd like to have myself back again. I’m tired of being bald, of having no eye lashes and no eyebrows. My doctors tell me that we are running out of options. In addition to the array of different types of chemotherapies I’ve taken both orally and intravenously, I've had a number of hormone treatments and radiation treatments.
On to support...the first 3 years I had the most incredible support system. It seemed my entire community was a giant warm blanket. Everyone was wonderful and so very, very helpful. As you can see by my website, thousands and thousands of people reached out to pray for me and wish me well. My immediate family and a few close friends of course, were and still are my support. My boys and my husband are more than I could ever ask for. Three of the most wonderful men God put on this earth. But as time passes, so too do the soldiers that were there in line to fight with you. As I get sicker and sicker it seems my support has dropped off. I don't know why. Maybe they never believed I would last so long and they're tired? Maybe they believe I've beaten it and no longer need them? But for some reason people go away...
As I wind up here, it is to tell you I have no hope for miracles. My condition worsens with each passing day. Unfortunately, I am not cancer free, nor have I been since the day I was diagnosed. In fact, my original IBC has spread to my thoracic, lumbar and cervical spine, my right and left hip (it is quite severe in my right side), my pelvis, seven of my ribs, both shoulders, chest wall, right lung lining, liver, distant lymph nodes. Additionally, I developed Upper Extremity Lymphedema pretty bad in my left arm as a result of my cancer. There is no cure for this illness either.
I've had six different surgeries as a result of my cancer; two were unsuccessful in curing my lymphoedema. I've had reconstruction surgery on my breasts that looks hideous. It's taken me this long to come to terms with the fact that this is what it is. I love life and try hard to squeeze all out that I can in spite of the fact that I continue to grow sicker. Not to mention that cancer has changed our lives in ways we never thought it could.
Insurance does not always pay 100% on all medications and all treatments. The chemo that I am on now and have been on for the past 11 months is one I receive twice a month. Each time I am treated, it costs us $8,000.00 and insurance covers $6,060.00 and the rest is left up to us twice monthly. It has been quite difficult...we've had to sell our home, as well as, a number of other things we have not wanted to. These things are a small price to pay for your life though, wouldn't you say?
Thank you for the opportunity to tell my story.