(Side note: I really should get a grip and stop the whining. I need to heed my own advice and see the beauty in my world and to give more credit to that beauty. I am lovingly and willingly supported by a core group of people who are there at every turn. I have no lack of people who will drop everything to be with me and/or my family and these people rock my world. They are incredible ... and I can't imagine going through this without them.)
However, as someone once said, I could have 999 people say positive things to me and one person say negative things and it will be the one negative that will stand out in my mind. When I had a "negative" reaction to my situation (or, worse yet (in my mind), an apathetic reaction), and complained about it, my friend posing such an interesting question gave me pause to think and I've been pondering this ever since. I think it's been about three or four months since she asked me this.
What exactly do I want people to do in response to the disease invading my body?
After months of mulling over this, I think I have come up with an answer. I'd like people to be in my present moment and not in the moment they wish I was in. I want people to accept my reality without projecting their denial into my present moment.
Case in point. I received a phone call last week in which the caller said, "I hear your treatments are going really well!"
My reply to her was, "I don't know who you've been speaking to, but I've had significant disease progression over the last six months resulting in an emergency room visit, a blood transfusion and three treatment changes. I'm not doing so well."
"I don't understand how you can say that! You do so much and you don't look sick at all!"
"That's the nature of this disease. It really doesn't matter how you look on the outside. What matters is what's happening on the inside and the impact cancer is having on my body."
"But you're doing okay right now, right?"
"Not really. I've just started a new treatment and it's too soon to know if it will stabilize things. We have to wait a few weeks first. However, I'm dealing with more pain and fatigue and things are more challenging right now."
"Well, I'm just going to believe that everything is going to be okay and not worry about it at all."
How am I supposed to respond to that? That's classic evidence of someone not entering my present moment and someone who made a conscious choice to not engage in my reality.
I get it. It's hard. I KNOW it's hard. I have to live with this reality every single day. I don't get a vacation from this and I don't get to spend any time in denial.
What happens with denial, though, is that reality ends up coming up and slapping you in the face. Just this week, I've read these words from others with this insidious disease:
"Well.... today happened. My oncologist came to me and told me- I am feeling serious effects of cancer. She has left it in my hands whether we try another chemo or just terminate chemo and try to enjoy the last days. 5 weeks from today my baby turns 5....... there is my new goal." (Holly, age 42, originally diagnosed Stage III in July 2012, metastatic in July 2013)
"I win. I have BINGO. I have [breast] cancer in my brain, lungs, liver and bones. No one is handing out prizes and all of those studies that they complain they can’t get enough people to enroll, all turn a cold shoulder to me. I am breast cancer trash, dying too soon to be worth a test. Which leaves me with one option.
"The kind that makes your hair fall out on your pillow. The kind that makes getting out of bed hard in the morning. The kind that makes you lose the ability to feel your toes. The kind that erases your memories and makes you think slow. The kind that requires you to take energy meds. The kind that makes it so everyone in the world knows that you do… in fact… have cancer.
"People will ask me when will I be done? The answer is never. Treatment never ends when you have stage IV breast cancer. Some win and can beat it back, but since November cancer has been giving me a royal wallop that I keep falling down and am not sure if I can keep standing back up.
"After a long talk of who knows what the heck to do, my oncologist wanted to go back to Taxotere. It worked miracles last year, maybe it will again. This time without Herceptin and Perjeta to nudge it along.
"The question posed was:
"Do I want to see the cancer shrink? Do I want to have a good quality of life? or am I ready to throw in the cancer towel, hang up my hat and join the land of hospice.
"Today I want the cancer to shrink. I want it to go away." (Mandi, age 35, originally diagnosed Stage II December 2010, metastatic October 2014)
There is no amount of denial that changes these women's reality. They are both up against the wall of running out of options. Unlike what one person wrote to me, writing and talking about cancer does not keep our cells "in cancer mode." To suggest such a thing, once again, blames the patient for not getting better.
I know ... quite frankly, it will be easier to deal with my illness after I'm dead. I know that sounds harsh, but it's the truth. It's a much lighter load to wear someone's name and/or picture on a shirt, than to be a part of their every day pain. It takes a lot to set aside the cult of optimism that Americans are known for and to embrace someone's suffering, especially when that suffering doesn't have a happy ending. There is no getting better for me ... I am only going to get worse until the point in which I die. Who would willingly walk into that story?
This doesn't mean that I talk about cancer all the time. However, it's hard for me to see the lighter side of things and my mind almost immediately goes to the deepest depths when asked simple questions like, "What makes you jealous?"
While I understand the intent behind the question (jealousy is NOT a good emotion), how many people respond with "I'm so incredibly jealous of those have no evidence of cancer in their bodies and I'm so jealous of those who are out of treatment." Being jealous doesn't stop me from celebrating their joy, but oh, I want that for myself as well. I want it for Holly and I want it for Mandi. I want it for all of us living with this mess every day.
It's not all about me. I'm well aware of that. I do my best to meet others in their present moments as well. However, if you ask me how I'm doing, please don't dismiss my answer with "Well, I'm just going to believe that everything is going to be okay and not worry about it at all." That just doesn't work. The best response at the moment is a simple "I'm so sorry."
My social media feed was filled this morning with the news of the death of David Bowie. I'm completely disengaged from his story and outside of the passing of a pop culture icon, it has zero impact on me. I couldn't tell you a single thing about him other than he had crazy hair and wore makeup.
However, I also received devastating news this morning of an unexpected death of a teenager taking her own life. I immediately put down my phone (I was reading emails) and I started to shake. I couldn't read past the sentence telling me that she was gone. I had to wait for my husband to return from the gym so that we could read the email together.
I don't know how to say this more bluntly. Be present in your people's present moment, no matter how pleasant or unpleasant that moment may be. Mental anguish and physical pain are so very real and they cannot be brushed away by "not worrying about it."
May God have mercy on us all.