October is #BreastCancerAwareness Month. If you’ve been on social media at all, you’ve been flooded with pink everywhere you look. Ribbons, Protect the Tatas posts, countless requests to donate to Susan G Komen for the Cure or Avon Breast Cancer Crusade. It’s all important, and I fully believe in supporting as many of the breast cancer causes as you can. Over 300,000 new cases of breast cancer have been diagnosed in 2018 ALONE. And if you’ve read my other posts, you’ll know that breast cancer awareness is vitally important to me. It’s a cause for which I will always stand up and fight.
Here’s the thing, though. We can buy that package of cookies with the ribbon on it this month, maybe even just buy it BECAUSE it has that ribbon on it, knowing that a small portion of the purchase will go to breast cancer research. We’ll wear pink. We’ll change our social media profile pictures to the pink ribbon. We’ll donate to the Walks for the Cure. All of that is important.
But it’s not enough. I’ve mentioned in my other posts that my mom was originally diagnosed with stage 3 breast cancer in 2014. She was declared cancer-free by the end of that year, but was re-diagnosed in 2016 with stage 4 metastasized breast cancer in her lungs and bones. And while we were so lucky in 2014, knowing that her cancer was curable, we were in no way, shape, or form prepared for what came after her second diagnosis.
October 2016 is when I realized that pink-washing everything may be vital in fighting this disease, but it was nowhere near enough. Because breast cancer is so goddamn much more than a pink ribbon. Bringing awareness to the disease, and even donating the proceeds to research, doesn’t touch on the lives of the women who are in the trenches. Actually fighting it.
But there’s something no one ever mentions, a hidden darkness in an already jet-black disease. No one ever talks about the family members. No one ever prepares the family and friends for what a cancer diagnosis actually means.
This list isn’t meant to take any spotlight off a cancer patient. It’s a list of what no one ever told me, and I was never prepared for, as a daughter of a cancer warrior, her caretaker. And I believe this information is absolutely vital in the fight against cancer, and the fight to take care of our loved ones the best we can.
When one person has cancer, the whole family has cancer.
It’s been really hard to make this list using my experiences, without it being about me. But I admit, pre-2016 (even in 2014) when I saw the posts and Pinterest pins that claimed the whole family fought the disease, I didn’t understand. It felt like a way to take the fight away from the patient. A way to pat yourself on the back for stepping up and doing what a family member should.
Then came Mom’s re-diagnosis in 2016, and I realized how naive I’d been. Because suddenly, my job wasn’t just taking her to appointments and tests, and keeping all her medical stuff straight, but actively trying to keep her alive.
You see, with this new diagnosis came new health issues that we weren’t prepared for. One of them was a by-product of the disease: Mom’s need to be seen as a fighter. So when she started getting weaker, losing weight by the day (which turned into about 60 pounds over the course of one month), and being unable to even walk across the room by herself without having to take multiple breaks, she was convinced this was just her new normal. She had cancer in her lungs, fluid around her lungs and heart, and this was just a symptom of that. So no matter how many times I tried to tell her doctors (and nurses, basically everyone I could get to listen to me) that she was shedding weight at a terrifying rate and unable to walk to the bathroom by herself, Mom insisted she was fine. I wasn’t there during the day to see how much she was doing, and she was only in the wheelchair because she’d pushed herself too hard earlier that day before I’d gotten there.
I knew this wasn’t true, because I talked to my dad. But the doctors had no reason not to believe her, so it took three months of my yelling at everyone who I could get in touch with, and her finally being admitted to the hospital with a blood oxygen rate of 30% and a resting heart rate of 19 before anyone would listen. On top of that, because she hadn’t been able to be weighed for months (always with the reasoning that she couldn’t stand because she’d overdone it that day cleaning) it took me threatening a lawsuit for the hospitalist to agree to send a specialist to find out why Mom wasn’t eating. Because in the notes he had, she hadn’t lost any weight in months, and she wasn’t emaciated at all.
So suddenly, I wasn’t just the note-taker. I wasn’t just the driver to the appointments. I wasn’t just the moral support during treatments. Over the next two years, I literally saved her life several times. And none of it was because Mom wanted to be difficult. It was because she didn’t want to be difficult. She didn’t want to go to the hospital again. She didn’t want to acknowledge that her leg wasn’t working, not because of the arthritis in her knee, but because something worse was happening.
Until it wasn’t just me trying to save her life. My dad had to pick up the physical slack of what she was no longer able to do. It started with the cleaning and cooking, running errands. Then that progressed until for the last six months, he’s been having to lift her out of bed to get her to the bathroom. To the couch. And then her fine motor skills went away, and he had to start feeding her. So while he spends hours every day changing her sheets, getting her from one place to another, and helping her get comfortable in bed because she can’t move at all, the rest of the family has to chip in to do things like clean the house, run to the grocery store. My niece goes over every month to write out their bills and mail them.
"How lucky I am to have something that makes saying goodbye so hard." — Winnie the Pooh
Your Heart Will Break A Million Times Over
Mom was originally diagnosed on January 28, 2014. Her second diagnosis came late July 2016. In that time, in almost five years, I’ve seen her cry twice. Once the day after her metastasized diagnosis, and two weeks ago, when I told her the brain tumors have gotten worse and our only option was hospice.
Through it all, she’s been this amazing warrior woman. She’s never complained once. I mean, not. Even. ONCE. Instead, she would tell us how grateful she was that it was happening to her, and not one of the grandbabies. And a little while after I told her about hospice, she smiled this beautiful smile, and said she was going to get to see her Mommy again soon.
In the last couple of weeks, since the oncologist called to tell me there was nothing left to do but hospice, I’ve been lucky if I made it an hour without breaking down into incoherent sobs. Because this is going to be our last holidays with her. Because she won’t get to see the punk grow up. She won’t make it to any more of the kids’ graduations or birthday parties. I won’t be able to call her when I’m leaving the grocery store anymore, just to babble at her while I load up my trunk.
Then, on top of all of that, on top of the grief that is ripping me apart, is the knowledge of what she’s going through. The fact that she’s been fighting SO HARD for SO GODDAMN LONG and this is how it ends. It isn’t fair. She doesn’t deserve this. She’s my beautiful, warrior woman and she deserves so, so much more than this.
Your Definitions of Strength Will Never Be the Same
You don’t know what strength is until you find out your mom, just days after being told it was time for hospice and after five years of cancer metastasizing to her lungs, bones, liver and brain, makes your dad get her dressed two and a half hours early for a birthday party, so she can come help decorate. Because it’s what she’s always done.
When you stop to think about how many levels they’re fighting on every single day, you’ll never look at strength the same way again.
Everything Will Be Okay, Until It’s Not
Six weeks before getting the call that it was time for hospice, the oncologist told us that everything looked great. That her weakness and confusion were caused by the steroids she’d been on for the last few months, and that her body was just de-conditioned. She smiled and hugged me and told me not to worry, we had plenty of time left with her.
We breathed. We celebrated. My mom dug deep for a strength I didn’t know anyone could possess–after already watching her find an inner strength we couldn’t even imagine a hundred times before–and went back to physical and occupational therapy. Determined to get up and stand on her own again.
Only to be told little more than a month later that the new scans showed the brain tumors had gotten worse, and we were out of options except hospice.
No One. NO ONE Knows What It’s Like To Watch A Loved One Battle Cancer Until They Have A Loved One Go Through It.
I mean it. People think they know. They think they can imagine it. They think because a distant aunt who lived three states away went through it, they have an understanding of how hard it is to watch a parent, or sibling, or spouse, or God forbid a child, go through it. They think they’re being helpful by telling you to take care of yourself first. They’ll tell you there’s no reason to grieve while they’re still alive.
I lost a ten year best friendship last year because she couldn’t understand why I wouldn’t let my mom make her own bad decisions, even if it killed her. I wasn’t my mother’s keeper, I didn’t have Power of Attorney (at the time), and if she wanted to make her own decisions, I should let her. Even if I knew I could save her and keep her around for a long time yet, this person thought I was an idiot for allowing ‘my mommy’ to rule my life that way. She went so far as to tell me that my husband’s alcohol-related Fatty Liver Disease was my fault because I insisted on taking care of my mom and fighting with the doctors to keep her alive when she was lying to them, instead of letting my mom destroy herself so I could focus on my husband. Because, she told me, I was putting my mom above him, treating him horrifically by not letting him tell my mom to f*ck off and take care of herself. She then went on a rampage about how I was an awful friend, that I was going to lose her because I insisted on putting time and effort into my mom instead of the friend who actually cared about me and my best interest, and if I was treating the husband the way I was treating her, she didn’t blame him for drinking himself to liver disease.
Her reasoning for all of this? She knew what I was going through, because she’d had an aunt die from cancer a few years ago. An aunt she hadn’t seen or talked to in decades. But her father had told this aunt that he wasn’t her slave, and if she wanted to make bad decisions and kill herself, it was on her. And the aunt died. My ‘friend’s’ father was fine with this. Because he’d tried.
The suckiest part is that there weren’t any words to get this woman to understand not only what I was going through, but what my mom was battling. Yeah, I was angry at her awful decision making, because it always resulted in her at death’s door while I fought frantically to save her life, when I could have stopped it from getting that bad in the first place. But I also wasn’t the one battling cancer in several different parts of my body. I wasn’t the one losing my dignity little by little, day by day. No matter how angry I was at her, I knew she was just tired of me having to take care of her. She thought if she just ignored it, pretended to be okay, and kept moving forward, she would be okay. Yeah, maybe I have a little PTSD from being told for two years that I was over-reacting, crazy, and just not seeing what I knew I was seeing, but this is MY MOM. And I knew I’d never be able to live with myself if I made any other decision.
SO. All that said, there’s a few more things I want to add.
Be kind to yourself. At the end of caregiving is grief, and it’s going to hurt a whole hell of a lot before the end comes.
Sometimes, things get so bad that all the patient can focus on is themself. They’re not being selfish, they’re literally trying to just keep fighting on a thousand different fronts and survive at the same time. It’s okay to be frustrated with them. While they only have themselves to worry about, you have yourself, your family, job, responsibilities, and a million other tiny little things. So remember, no matter how much you love them and want to do everything for them, it’s okay to ask for help. And don’t ever let them decide for you how much help you need to take care of them.
Something else that I only learned a few weeks ago, despite seeing the same oncologist for almost five years: Almost all oncologist offices have a social worker attached. If you need help, reach out. While the social worker at my mom’s oncologist wasn’t able to help us get the caregiving we needed for her, she was able to give me the direct number to one who could. And within fifteen minutes, we were set up to get my parents evaluated for outside help to come in and help my dad take care of her.
Finally, always, always remember that no two people handle grief and pain the same way. Don’t let anyone tell you how you should be feeling or acting. And remember that the other people who love your cancer patient as much as you do may be handling it differently. That’s okay. I have one sister who has to bury her head in the sand and only deal with the information on a need-to-know basis. My other sister needs to see only the positive, and look at the bright side. I need to be realistic, deal with things as they happen, and have a plan. We all assume the others are going to hate us because we’re not handling it right, but honestly, we need each other too much right now to be angry that we’re not handling it the way ‘we’re supposed to’. There isn’t a right way or a wrong way. You do what you need to do to put one foot in front of the other and survive. So be kind to yourself, and to everyone else. They’re hurting as much as you are.
5 Things I Learned About Grief After Losing My Mom
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Screw This Shit, I’m Out
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