Fare thee well, Lisa

A prominent voice in the breast cancer community, Lisa Bonchek Adams, died of metastatic breast cancer last week.  I followed her on Twitter and Facebook, and I read as much of her writing as I could.   She was initially diagnosed with early stage breast cancer.  She underwent all the treatment for early stage breast cancer, including having an oopherectomy.    Lisa writes about that here.   She did everything she was supposed to do treatment-wise, yet she still fell into the 30 percent category of those whose breast cancer recurred stage 4.

As someone with early stage breast cancer, her story is bone-chilling, frightening to me.   My biggest fear used to be developing breast cancer like my mom, and that’s happened.  My biggest fear now: my breast cancer coming back stage 4, and I die at a young age just like her.  Stage 4 is the nightmare.  It’s my nightmare, and at the same time, it’s made me beyond appreciative for my current good bill of health.  I feel a heightened sense of panic and anxiety every time I visit with my oncologist and that won’t ever change.

I won’t turn my back and pretend that metastatic breast cancer doesn’t exist because for so many, my nightmare is their reality.  I have come to accept that this may happen to me, but I won’t ignore the fact that approximately 40,000 die of this disease every year.   I won’t ignore those like Lisa, and so many others who died of a disease packaged up in a prettysexycool pink exterior.

Lisa did not subscribe to the Pink Ribbon Culture.  She was critical of Komen.  She railed against the Pink Ribbon Culture with open, honest talk about the disease, and its effects.  She talked openly with her three children about her disease and its ultimate outcome.  Since I barely remember my mother because my parents shielded me from the last six months of her life, I appreciated Lisa’s honesty with her children.  I wished my parents hadn’t shielded me so much, then perhaps I would have a memory of my own mother.

Lisa also didn’t subscribe to the cancer pep talks, and in a May 2013 Salon article, she commented:

“I don’t need to be told to fight the good fight to beat it or the key is to just stay strong or that it’s mind over matter.  You force me to assert my knowledge, insist upon my diagnosis, explain the desperate nature of my disease, spend my time defending my sentence.”

After her death, a friend of mine with Stage 4 breast cancer posted something Lisa wrote entitled “When I Die” on Facebook.  Here’s a snippet from that post:

Don’t try to comfort my children by telling them I’m an angel watching over them from heaven or that I’m in a better place:

There is no better place to me than being here with them.

They have learned about grief and they will learn more.

That is part of it all.

(For all those who believe that a positive attitude is all you need to beat breast cancer, how would a positive attitude ever trump a parent’s desire to see their children grow up?  Riddle me that, Batman.)

While I often refer to my mother as my guardian angel, the second line really punched me in the gut: “There is no better place to me than being here with them.”  Oh my heart, it hurts.  As a woman whose had breast cancer and the daughter of a woman who died of the same disease, I gained insight into what my mom had to have been feeling as she knew her time was limited.

If you, dear Get Up Swinging readers, want to help those with metastatic breast cancer and honor Lisa’s memory, then you can do so here.

Lisa didn’t lose her battle or a years-long fight.  She died of metastatic breast cancer at the age of 45.  The metastatic breast cancer community lost a powerful voice and advocate, but her words will live on.

Advertisements

Is cancer the “best death”?

When the cancer community read the blog “Cancer is the best death,” written by Richard Smith, a doctor, it’s not surprising that it was met with a negative response.

So death from cancer is the best, the closest to the death that [Luis] Buñuel wanted and had. You can say goodbye, reflect on your life, leave last messages, perhaps visit special places for a last time, listen to favourite pieces of music, read loved poems, and prepare, according to your beliefs, to meet your maker or enjoy eternal oblivion.

This is, I recognise, a romantic view of dying, but it is achievable with love, morphine, and whisky.

When I first read that, my jaw dropped and major eye rolling commenced.  Did he describe dying of cancer, or was he paraphrasing a horribly cliched Hollywood movie he just watched?  Didn’t Nicolas Cage star in a movie of someone slowly killing himself with alcohol?

What I can remember about my mother’s death from breast cancer certainly does not reflect Dr. Smith’s romantic view of dying.  My mother spent a lot of time in treatment, or at church or with her family, trying to get in as much time in with her young children that she could.  She didn’t go on some soul-searching journey or adventure to cross off all those items on her bucket list.  She was in treatment for metastatic breast cancer and at the end, she died in a hospital, surrounded by her loved ones.  My mom only lived six months after she was diagnosed with mets.  She didn’t have time to visit any special places, unless you count doctors’ office and hospitals as special places.

Janet Freeman-Daily, a metastatic lung cancer patient who writes at Gray Connections, responded (please read the entire blog):

The reality is that death from cancer often does not conform to Smith’s vision.  Death by cancer happens when tumors cut off your air supply, compress your heart so it can’t beat properly, block your gut so you can’t eat, cause organ failure, erode your bones, press on nerves, or destroy bits of your brain so you can’t control your body or think properly.  Sound painful?  Without pain medication – sometimes even WITH morphine and whisky – it is.

As far as I know, Dr. Smith does not have metastatic cancer.  Ms. Freeman-Daily does, and she writes, unsurprisingly, a realistic view  and description of cancer.  Ms. Freeman-Daily also points out:

Among the lung cancer patients I’ve come to know online through their own posts or those of their caregivers, death can claim patients before they have established financial security for their family, raised their children, finished college — or even had time to recognize that they are dying. Many linger after they’ve lost the ability to do what they love, communicate, or think clearly. Most will eventually find themselves dependent on others for their basic needs while still aware of the emotional and financial stresses their illness imposes on their loved ones.

Some diagnosed with Stage 4 cancer may die within weeks or months of their diagnosis.  Others may live with metastatic disease for years and die after all lines of defense have failed.   I followed the blog of Vanessa T., who recently died of Stage 4 breast cancer.  Her family loved her so very much, and watching her slip away because of the mets to her brain was horrible.  How could anyone see anything romantic or ideal about her passing at such a young age?

Marie Ennis O’Connor also wrote a response to Dr. Smith’s blog:

Not everyone who dies of cancer has this peaceful idealised death. My own mother’s death from brain cancer was  far removed from romantic.  Both men write of a dignified and peaceful death, along the lines of our work here is done on earth – but what of the young mother with metastatic cancer who desperately wants to be there for her children growing up? Is love, morphine and whisky enough to ease her pain?

The most offensive, mind-boggling part of Dr. Smith’s blog post was this:

But stay away from overambitious oncologists, and let’s stop wasting billions trying to cure cancer, potentially leaving us to die a much more horrible death.

I will contend that there are probably cancer patients out there who continue with various treatments, only to make their remaining weeks or months excruciating and painful.  They might choose to do so because they feel pressure from their families to continue on, or they are relying on possible false hope given by medical professionals (possibly the “overambitious oncologists” Dr. Smith is referring to?).  You know what, though?   If a patient does make that choice and they are of sound mind, then their decision should be respected, not pitied or judged.   To take away someone’s hope, no matter how unrealistic it may be, would be cruel.  Perhaps an oncologist may be overambitious, but what if the patient wantthat type of attitude and approach?

Nobody knows what they will do when faced with the hard decisions that terminal cancer patients deal with during their treatments.   As much as I loathe the word, I will use it here: dying is very much an individual journey.  I pray that those facing these decisions aren’t pressured to keep going on if they want to just live out their remaining days without debilitating treatments.  When terminal cancer patients decide it’s time to stop, those decisions should also be respected.   People should be allowed to die with dignity.  These broad statements, like the one Dr. Smith makes, implies that terminal patients should just check items off their bucket list and die already.

I will never ever agree with the statement that we should stop “wasting billions trying to cure cancer.”  Nope.  Cancer research has saved lives and will continue to save lives.  The money being spent and used on cancer research is priceless to those with metastatic disease  who don’t have the gift of time or people like me, in remission, who pray to God that my disease doesn’t come back.

But it’s not like I have a choice in the matter.  Cancer doesn’t work that way.

Update

Since the passing of The Boyfriend’s family member of cancer, I have been at a loss for something to write. Normally, I will come across something on social media, like a ridiculous and offensive campaign all in the name of “awareness,” or an ignorant comment from someone high-profile, and I’ll furiously write a blog. My righteous indignation serving as a guide to my angry typing.

After watching someone die from cancer and seeing the grief and pain the whole process inflicted on his family, I am just tired. I am at a loss. Cancer made its way into my life once again, and as it does, the disease just took, stole and destroyed.

I listened to the nonsensical words from a man, who had been praised for his sharp mind. I saw the last laboured breaths of a frail man, who had slipped into unconsciousness for the last five days of his life. I tried to be as quiet and unobtrusive as possible among his family members, feeling like an interloper among grievers. I didn’t know him prior to his illness.

This period of when he was actively dying, and my life went on hold, ready to change at a phone call’s notice, really got inside my head. Instead of being the one in the hospital bed, I was the hospital visitor who unfortunately understood the cancer lingo. I watched the man I love grieve for someone he loved. I learned, as we all do, how helpless we are in the face of death.

I flash-backed to my own treatment at the sight of the tubes and the beeping machines. During this period before and after he died, I felt unfamiliar pains in my back and hip. At times, I thought in a panic, “Do I now have metastatic cancer?” My worst nightmare was the main topic of conversation for a solid month.

The boyfriend needed me, so I dedicated myself to being the loving partner for him, all the while keeping inside my fears and worries. He shouldn’t, nor did he, have to console me while someone in his family was actively dying of cancer. This man was there for me during my cancer treatment, and I would be there for him to hell and back.

I have cried. I have felt anger, like deep within my belly anger. When someone is dying of cancer (not just living with metastatic cancer, but actively dying from the disease), the constant helplessness is exhausting.

I have listened. I have given countless hugs. I have reserved judgment over how someone may choose to cope with stress. I have come to accept my cancer-related fears as a constant in my life, and that new normal I have heard so much about.

Since the Boyfriend’s family member’s death was several weeks ago, now it’s the moving on portion of this process. Occasional moments of sadness flares up, but we’ll talk those out. The Boyfriend and I just scheduled our first vacation in two years. We’ll be leaving next month for a week long vacation of fun, work-free, stress-free living.

Time to re-gather the strength and passion I feel for cancer, and move on and forward. It’s not like cancer is taking a break.

Angels

A family member of the Boyfriend died of cancer yesterday.  I won’t go into that here because his family isn’t one to broadcast anything about them, and I want to respect that.

What has been on my mind lately is something that a hospice nurse said to us while we were sitting in the hospice room for Boyfriend’s family member: “I’m not really religious or anything, but what I do believe is that angels come to us before we die.  I’ve had patients, right before they pass, begin talking to people who aren’t in the room.  When I ask them who they are speaking to, they’ll say a spouse or their parent who has been long gone.  I had one patient say right before he died: ‘Amazing.’  So I truly believe that our loved ones come to us before we die, and they take us to where we’re going next.”

Most of my friends and family members rarely hear me discuss religion or anything spiritual.  Heck, I bet some would guess I’m atheist (I’m not).

I was raised Catholic, and when I turned 16 and had my confirmation, my father told me that I was an adult in the church’s eyes.  If I didn’t want to go to church, I didn’t have to go.  So I didn’t, much to some of my family members’ dismay.  My father never pressured me to return to church, which I am grateful for.  I’ve had issues with the Catholic religion based on their social views, and because of that, it’s not been a religion I want to associate myself with.  I felt then, and I still do to this day, the Catholic Church is behind the times, and it’s oppressive.

scan0038

Good little Catholic girl?

The God I choose to believe in is not a spiteful or vengeful God, and He created us all in his likeness.  I remember one time, in high school, this girl in my yearbook class was on this rant about homosexuality.  She was talking about how it’s a sin, according to the Bible.  When I asked her the last time she went to church or read the bible, she cursed me out.   (Yeah, I wasn’t popular in high school.)

While I haven’t been to a church or service, really, for most of my adult life, I haven’t stopped believing.   Most of my belief in God and heaven is tied up with my mom.  I want to believe that I will see her again, and I’ve always felt her presence in my life when I needed strength.  When I was in an emergency room in Myrtle Beach, South Carolina, after experiencing the then-most tragic event in my life, I was talking to her in between sobbing.

When I heard the hospice nurse talk about those about who are about to die who see their loved ones, I almost lost it.  (I waited until I was in the car by myself before sobbing.)  I have no doubt that my mother would be there, my grandfather (her father) and my grandmother (my dad’s mother) will be those who I see.  The idea that while still alive, I’ll still see my lost loved ones again filled my heart in a way I hadn’t felt, probably ever.  In that moment in the hospice room, I physically felt my beliefs, if that makes sense.  I was overcome with such extreme emotion that I was afraid I was going to make a scene in front of Boyfriend’s family, which would have been the absolute worse.

The nurses there also reminded me that there are angels on Earth.  Those who provide hospice care to the dying are absolute angels.  To do what they do, day in and day out, I’m just blown away.  It definitely takes a special type of person to be surrounded by death and their grieving loved ones, and still be smiling and asking, “What can I do for you?”

Even those this wasn’t my family member dying, it was still awful to watch him/her dying.   Watching anybody dying is pretty horrifying.  This was my first time being so death-adjacent after my own cancer diagnosis, and it was frightening to watch.  I felt bad for the actual person dying, helpless watching Boyfriend and his family be so distraught, and then guilty for wondering, “Is this my future?”

Boyfriend’s family member is at peace and no longer suffering.  I hope whoever greeted him/her onto his next journey was someone incredibly special.

“I do not fear death. I had been dead for billions and billions years before I was born, and had not suffered the slightest from it.”

Mark Twain