Cancer.
It’s a word you never want to hear, particularly not when it is attached to a diagnosis for your little sister. My sister was 29 when she called me to tell me not to worry but they’d found a spot to biopsy on her skin. Then came further reassurances from afar when the biopsy came back positive for melanoma. It has been a stressful and frustrating 14-15 months since all that came around.
I won’t share the entirety of the story here… that’s my sister’s to tell. I can tell you, my sister was never one to be in the sun and particularly not without sunscreen. My parents were fastidious when we were children growing up in the tropics too. This isn’t a matter of carelessness, this is a matter of genetics and an insidious disease that doesn’t always follow the “rules” that we all think will protect us.
This doesn’t mean anyone should forego sunscreen or protection from sunburns. That’s important. I’ve become a huge advocate of it since my sister’s diagnosis, to the point of obnoxiousness. I was already past the point of sunbathing and I’ve long touted the phrase, “Pale is healthy and beautiful.” Being naturally olive-toned has helped my vanity for not wanting to appear pasty but either way, it is the best way to be, especially as an athlete out in the elements each day.
Anyhow, today they gave us the news that there is a spot growing on my sister’s liver. The biopsy is being performed as I type but it doesn’t appear that there will be good news to come from this. Perhaps this is my natural tendency to worry too much and to “prepare for the worst, hope for the best.” Blind-eyed optimism is not my forte. I’m far too pragmatic at times. She is receiving excellent care though at the Moffitt Cancer Center and thankfully, this process has been through a clinical trial for ipilimumab, thereby not bankrupting her family. Makes me think of Breaking Bad and this cartoon that popped up on the web the other day.
So, now we wait. Thankfully with a military background, “hurry up and wait” is something ingrained in my family, but it is the waiting that mentally destroys us. Perhaps because in that waiting time, we are completely helpless. We can’t take any action to help or fight. We simply must BE. I’ve had numerous conversations lately about how cancer deprives us of our sense of control. My little niece is manifesting her lack of control by taking control of NOT doing her schoolwork. How else do you DO something about your mother having cancer when you are 8? There is no other way. She must enact some control on her environment and her life in the only way she knows how, even if she is a little genius. The rest of us deal in other ways. As an actualized adult with some knowledge of these things, I can at least name these feelings I have and I can express them in the capacity I have to explain the helplessness, the feelings of distance, the pain, the fear, the worry, and the utter lack of control… even if those around me may not understand completely unless they’ve gone through this. I’m so grateful for K. Not just now, because everyday I take time to thank the Universe for his courage, his strength, his calm, and his presence, but especially now, when these things bear me up under the weight of such a prospect.
I may lose my little sister, my best friend for almost 31 years, my constant companion and, at times, greatest nemesis. She is stubborn and stubborn; did I mention stubborn? And loud and witty and so full of heart. She has been my rock through so much and I have been hers and now, I don’t know what to do for her other than keep moving forward with positivity and ideas about what we can all do to help her in this fight. It is HER fight though. I understand that the internal workings of her mind must be struggling with this. I recall how much I felt betrayed by my body after my two miscarriages, the utter failure I felt for something I had no control over that… with cancer, I can only imagine those sorts of feelings magnified a thousand fold. So, I understand that I cannot fight this FOR her, I can only be there for her when she needs me. Yet, it is something I must say aloud at times:
I may lose my sister.
We can all die at any time but this isn’t like the prospect of a car accident. This is the spectre of Death hanging over our family, simply waiting to take a seat at the table in place of her smile. This is considering the years… the ones we were taking for granted. I expected her to be old and gray with me in time… now I wonder, will she see 35? 40? Will she see her children go through puberty? I wonder how a family copes with such a gaping hole in their psyche… I don’t know how I go on if my sister dies because she is such a part of me- she resides in me as my heart and as my strength. What do I do if she goes? How do I teach her children about her wild, loud spirit?
It is a hard day and some days, this evil word CANCER is something in the background. It’s been with us over a year. Today it is at the forefront as I stare at survival rates if this is confirmed a change in her categorization. From Stage III to Stage IV… a simple thought that envelops all the necessary end of life planning and preparation for what is to come.
Melanoma. Cancer. Just words but they are heavy, oppressive, destructive words.
Now we just wait.
Update 9/27/13
The news was the worst possible. The doctors have found several new tumors on my sister’s liver. This now categorizes her as Stage IV, M1c. I could give you survival rates, as I’ve stared at them for days, or statistics, but let’s be honest, none of those mean anything. We don’t know how long any of us have. We don’t know if this will be beaten into remission. We currently don’t know what treatment will be. My feelings of utter helplessness are overwhelming. I am not free to simply go to Florida and stay with my sister through this. Life has to go on… work must be accomplished, responsibilities met, obligations fulfilled. K and I will go home for Thanksgiving to spend some time with the family but until then, we are inundated with all we must meet in our life in Tennessee. So, now we wait. We wait for next week when my sister meets with her oncologist again. We wait for what treatment will be. We wait for the treatment itself. We wait for new results. We wait for the numbers and the dates and we simply wait to see which way this goes. It hasn’t been good so far, especially not since this trial drug that has shown such promise in others has not been effective for my sister.
We just wait and yes, we worry. We cry. We hug those nearest us and remember to be grateful for each minute we have. It’s all we can do for now.
Cancer has been at the center of our family life since I was born. It seems to me, it is like a virus that is transmitted somehow, and lays dormant, until it decides it’s time to rear its ugly head (Just my opinion). Even under the best of circumstances, you wait. You wait until it shows up again. You wait to see see the doctors. You wait to get test results. You wait to have the tests again to see if it changes on its own. You wait to have operations. You wait to see if you’ve beaten this horrific thing. Then, you wait to see if/when it will show up again. It is a waiting game that leaves you exhausted, frustrated and feeling helpless. The losses along the way are devastating.
I am so sorry that your Sis is going through this. I am sorry that you, your mom and her children are going through this. All I keep thinking is, if only I could do something. There is faith that a higher power has a plan, but it all seems so distant from what is going on in the moment. But, with what is going on, all I have is faith. There is no solace in this world.
I can tell you, that I have been to a place, where there is peace and a oneness. Where there is total bliss, where we are all a part of each other. It’s a place of love and total understanding. I had a sense of what everything meant. I was aware of everyone and wrapped in love from all of them. There was such a oneness. All of this pain and suffering, all of this world just fell away, and there was no concern over it. There was not even a thought of it. Then, I came around and woke up here, in pain, again.
I wonder if we chose to be here, to be separate, to be alone, to be special in some way. We came here here to play a role, and we’re bound by rules that are extreme. Maybe, it’s the ultimate game. It’s certainly realistic, but I know there is more, and it is my only hope, that when we leave here, there is something better. There is the place I visited, where I was wrapped in love and felt a part of everything.
My love to all of you. You are in my prayers.