I want to live. Not forever, but at least as close to a normal life expectancy as possible. That happens to be something like 78 years for women in the USA where I live. I am a long way from that number.
Yeah, I am gonna die—who isn’t. But, having metastatic breast cancer changes the way I see myself and the way others see me. It can be a sad and often lonely place. People verbally and sometimes physically display concern; maybe because our society deems that the right thing to do; maybe they really care.
Since my diagnosis I feel like there is big sign over my head and it says “dead”. The sign makes me feel like I am a lost cause. I can try this drug or that drug, but nothing will save me. I was told too many times in the beginning of my stage IV disease that I was incurable. I heard my oncologist the first time. I heard her the last time and everything in the middle. Hope was/is something I didn't want to let go of so I kept digging, asking “why can't we do this or can we try that.” She must have assumed I didn’t understand my condition. I did and still do.
I know I am gonna die, but the "anyway" part is bothersome. I wish I could disconnect myself from the knowledge that no matter what treatment I get nothing will change the fact that I have a terminal condition. Searching for treatments that might offer help is a mind boggling and lonely endeavor especially when done by yourself. I do it to prepare for future treatments and to bring forth any missed details that my oncologist might have overlooked. My research actually became relevant in October and resulted in my cancer being radiated. It could happen again, so I continue searching. I know my doctor is following guidelines for the standard of practice for my disease and doesn't want to or is not allowed to deviate from a group formula of treatment. I understand there are procedures to follow, but I am an individual, dammit. I want to be treated as such. I want my doctor and her team to consider solutions that will best treat me. I shouldn't have to find them. I don't want any doctor to think I am going to die anyway so no need to put a whole lot of effort into keeping me alive. I won't make it to 78, but I am not going to sit in my house and let my life tick away without doing something. It is my life, and I care about it more than anyone. Maybe by some crazy miracle my radiation oncologist's words will become truth.
Even family members can send messages—unconsciously, I hope--that make me feel like that stupid "dead" sign on my head is telling my relatives, "She's going to die anyway," so we should plan for the future without her in it. This may seem ridiculous, but I couldn’t ease my mind of this possibility recently when one of my relatives picked numbers for the most recent Powerball Lottery with winnings of 1.5 billion dollars. I viewed the numbers after this person said to my daughter and me, “Look at the numbers I picked?” It didn’t take long for me to see the importance of each number. Each was selected for its match to the day of birth of each relative that person sees regularly, and one they do not. It also wasn’t long till I realized there was no number connected to me, the day I was born. Where was my 19? Every person was represented by one of the 6 numbers except me—we have two sets of twins and two others with the same birth day making it easy to include everyone. The Powerball number was actually a close repeat for one particular person. They already had a spot, so why couldn’t the Powerball number have been mine? Why was I left out? Is it because I am gonna die anyway? Is it because I am unlucky? I hope it was just an oversight by the person that chose the numbers. But, it did make me wonder. How could it not.
My son told me to quit worrying about what others thought. My daughter’s voice entered my mind reminding me to “go do you. Don’t worry about what others think.” That is hard for me to do. I make judgements and assumptions about people so why wouldn’t others do the same about me? There are obviously more important things for me to be bothered about, but it is too ingrained in my personality to not consider the motivations and thoughts of others. Perhaps I am simply overly sensitive about it because well . . . I have cancer, and I am going to die--anyway.
It is hard to feel like I matter when the science of breast cancer keeps smacking me in the face telling me a cure may be an impossibility. US Presidents have tried to soften the blow to cancer patients and future cancer patients experiencing the “you’re gonna die anyway” reality of advanced stage cancers. In 1971, President Nixon declared a War on Cancer. He made this statement in his 1970 State of the Union Address:
"I will also ask for an appropriation of an extra $100 million to launch an intensive campaign to find a cure for cancer, and I will ask later for whatever additional funds can effectively be used. The time has come in America when the same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dread disease. Let us make a total national commitment to achieve this goal."
President Nixon signed the National Cancer Act of 1971 in order to accelerate finding a cure through research to sort out the puzzle of cancer biology, to develop better treatments and to change the number of deaths associated with all cancers. You can find information about it here--War on Cancer .
Now President Obama and Vice President Joe Biden have announced a new “To the Moon Campaign” to fast-track cancer research. I hate to be the party pooper here, but will this turn out any differently than any other hype about finding a cure for cancer? I don’t think much will change. At least, if the President and Vice President are talking about it publicly, maybe the general public will increase their donations. As far as where our tax dollars will end up since we were not told the specifics of the research to be funded, I can only hope the people responsible for deciding where to allocate the money will not waste one valuable cent of it. The cancer cure hype will last until just after the election of our new president most likely. Then it will quietly fade. Going to the moon seems like it was a far easier task than curing cancer, but I continue to hope that it is possible despite the daunting process surrounding it.
I too want to affect change about metastatic breast cancer. I would like to do more, but there is this huge time-sucker called sleep that inhibits my ability to even get my personal to-do-list done. If it is not sleep then it is some other life event. So, for now, my little classroom in the blogosphere will be my quite voice to the world about my particular brand of cancer. Since not many people leave comments when they visit my blog, I will assume most come here for the same reasons I visit blogs: seeking answers, looking for hope. I will keep sharing what I learn and experience hoping that thoughts of “you’re gonna die anyway” will one day go away for all of us with cancer. Maybe someone without cancer in their life will read one of my posts and become inspired enough to spread the word that money and people are needed for truly impactful research. We in Cancerland already know the importance of it. Maybe then we will be viewed as individuals who simply want to enjoy living for a little longer instead of dead but still walking. Presidential pep-rallies are nice, but eventually everyone calms down.
If you are the person that was lucky enough to win the lottery last night and wondering where you might spend your winnings, consider thinking of me and other stage IV people: Mandi, Jen, Ann, Beth, Catherine, Kate, Jan, Lulu, Jill, Susan, Kiara, Kel, Leisha, and Sherri. There are more of us in the blogosphere that I either haven’t found or haven't had time to add them to the list of blogs I follow--yet another item on my to-do-list that I haven't been able to check off. A donation to research would be greatly appreciated. If you’re really feeling very generous, we all have some medical bills that if paid in full would help our families tremendously. Please keep in mind that patients now and patients in the future want to live in a world where people, including our oncologists, do not have thoughts that can be shaped into the words, “You’re gonna die anyway”. That same thought sits in my mind and throat too, every day, every second. It hurts. It is the truth, and it needs to change.