Sadly, Joni passed away from metastatic breast cancer on October 17, 2016. This is the story she shared.
I’m Joni, and I’m here to share my story because I want to help people. I’ve always done better when I’m standing up for others rather than myself. When I was a kid, I’d come running whenever anyone gave my little brother a hard time. I mean, I could pick on him all I wanted, but no one else could! Then, raising my two sons as a single parent, I got used to relying on myself. Even after I lost my job in early 2015, I worried about being thought of as a “charity case.” So, it’s hard for me to ask for help. But I’ve been working on improving that since I was diagnosed with breast cancer in April 2015.
I’m still figuring out a lot of things since my diagnosis. But one thing I’ve realized: There’s a wealth of support available—so much I didn’t even know about. So, I want to tell you why that support has been so meaningful for me.
Before we get to all of that, I guess we can start with a few basics: Number 1. I’m a huge dork—I love numbers, atlases and maps, reading, zombies, and comic book movies. Number 2. I am one cat short of a crazy cat lady, and proud of it. I can’t help myself. I love cats! Number 3. I can’t stand feeling vulnerable.
Maybe that sounds a little weird considering that I’m sharing my story today. It’s weird for me too! I mean, I never thought I’d have a reason to be vulnerable. Why would I think I’d get something like breast cancer? I’d been getting mammograms with ultrasounds for years. I’ve always had dense tissue and fibrocystic lumps, so I had kind of trained myself to not think about the lumps too much during self-exams because I’d freak myself out. I relied on my regular clinical testing to make sure I was good, and that the lumps I felt weren’t anything dangerous.
For about four years, my tests always came back clear. Then I found a lump in my breast—truth to tell, my boyfriend, Dan, found it. Had I found it, I probably would’ve ignored it a little longer. In my mind, I kept going back and forth about the lump. I told myself, “It’s just the same old, same old.” But I called and set up another mammogram and ultrasound.
Coping With Breast Cancer
They ended up doing a biopsy the same day. Afterward, instead of having me go and get dressed in the locker room, the nurse brought my clothes to me. That’s when I knew. They never did that! They told me they were pretty sure it was breast cancer.
Besides the initial shock and disbelief, I felt angry, betrayed by the medical technology I had trusted and relied on. I always figured with the extra testing, they could see everything and I was safe. Since then, I’ve learned that just because the test results are negative, it doesn’t mean everything is okay. It just means that they didn’t find anything. And that’s especially true when you have dense tissue. I wish someone had explained that to me.
But I don’t like sitting around crying—it makes me feel too vulnerable. I wanted to get cancer over with and move on with my life! I met my oncologist and, at our first appointment, he asked if I was a numbers person. I told him “yes” and he provided me with a ream or two of statistics to satisfy my inner dork. I read everything they gave me. I decided to get a full mastectomy with reconstruction rather than just a lumpectomy. I wanted the best chance of getting rid of the cancer for good. A group of some of my best friends—we call ourselves The Original Seven—went to Chicago about a week before the surgery for the last member’s 50th birthday, and also to take “the girls” out for a last hurrah before they were no longer a matched set. It almost felt like part of me was celebrating. My prize for the cancer, surgery, and treatments would be a brand new set of ta-tas.
Well, that’s not how it happened.
Reconstruction did not go well. I had four additional surgeries and, after a few months of complications, along with delayed chemo treatments, they took everything out. I was disappointed. Good-bye for now, prize ta-tas!
That was a hard time. My friends and family tried to help me through it and kept asking what they could do. But even though friends are very understanding, unless they have been through it themselves, they can’t understand as much as they would like. That’s why I joined a support group for women with breast cancer. The first time I walked in, I felt kind of stupid sitting there, talking about myself, and crying. They made me feel like it was okay. Those first few meetings were more emotional for me because things weren’t going well. We cried; we laughed; we listened to each other’s stories.
Those women amazed me and still do. I feel like some of them have been through way worse times than me, but their strength in the face of extreme difficulties makes me feel like I can do it too. And maybe it sounds weird, but it’s easier for me to be vulnerable in front of them than it has been in front of my family or friends.
Getting Diagnosed With Metastatic Breast Cancer
With people I’m close to, I always tried to lay my cancer out in a way to make it easier for them. When I was originally diagnosed, I emailed my friends because I couldn’t stand telling them one-by-one in person. I included my new knowledge about the limitations of technology and the importance of self-exams. I told them, “Yes, I have breast cancer, but I get new boobs out of the deal. For now, just call me One Jug Joni, or OJ squared.” Well, it wasn’t as easy to minimize things when they found a shadow on my CT scan while setting me up for radiation. That was in December 2015. Right before Christmas, I learned my cancer had metastasized to my liver. It was a shock. When all this started, I thought I’d get treatment and get rid of my breast cancer. But here I was—some Christmas present.
I felt like I was expected to lie down and die—like my life was over before it really even started. I wouldn’t get to see my younger son‘s babies. I wouldn’t get to “retire” and become an eccentric old fart, which was always my plan. I looked forward to acting strangely, having everyone assume it was old age, when all along I would know exactly what I was doing!
I was going back and forth through the cycle of anger and grief, except I kept getting stuck on the “grief” part. I was really upset. I couldn’t hide it from Kevin (my son who lives with me), my best friend Katy, or my boyfriend Dan. So, I pretty much just told them everything. Kevin actually kind of laughed when I told him I worried I wouldn’t get to see his babies. He said, “I’m not having any babies, so let’s not worry about that right now.” My best friend just lost her mother to cancer and I felt terrible about putting her through more. And poor Dan. During our short time together so much had happened. We started going out in October 2014. In December that year his mother died, followed by his stepmother three weeks later. The next month my son was in a terrible car accident. Then Dan found the lump. Then my diagnosis. I said to him, “You didn’t sign up for all this, run away! Run far! Run fast!” He said, “What kind of man would I be if I did that?” Much to my surprise, Dan stuck around.
It started to sink in that friends and family truly want to help make life easier for me, just as I want to make life easier for them. It’s still difficult for me to ask for help, but I’m working on it. There’s just so much help available—many resources and programs in the community, friends, family, and even doctors.
My doctor is a statistics guy. He told me that studies on metastatic breast cancer include a lot of older data and that our understanding of the disease is always evolving. So once we discovered my cancer was also in my liver, my doctor and I discussed my options. He felt the right option for me was taking IBRANCE along with letrozole, which is an aromatase inhibitor.
When I got my first diagnosis, I didn’t turn much to the Internet. This time, I was looking up everything I could find on reputable websites. I looked up IBRANCE several different ways, including on IBRANCE.com. It was almost like when I was shopping for a car, reading all that information. I liked that IBRANCE treats my specific type of breast cancer, metastatic HR+, HER2-. Plus, I was postmenopausal and this was my first metastatic breast cancer treatment. My doctor set me up with an appointment with his nurse educator, who went over everything about IBRANCE, including the possible risks and benefits.
I began taking IBRANCE as prescribed, three weeks on IBRANCE and letrozole with one week of just letrozole. The “handy dandy pill caddy” Pfizer provided helped me remember to take my medication. At first, my doctor was happy with my results. I did experience side effects, including upset stomach, but after talking to the nurse practitioner, she gave me some tips to help manage it. She mentioned that other side effects were also possible, including low white blood cell counts, infections, and fatigue. I took my IBRANCE with breakfast—that’s what worked for me, although other people may have different experiences. In May 2016, I stopped taking IBRANCE and letrozole.
I still get overwhelmed when I think about my diagnosis. When that happens, I try to focus on something else like reading, playing computer games, or petting my cats. It also helps to be a support to others both in and out of my group. For example, I’d noticed some procedures at my infusion center that I thought could be improved, and I spoke to the nurse administrator. The next time I was there they had changed their procedures. They thanked me for bringing the issues to their attention and outlined the changes they made. I know this story is partly about me learning to accept help, but helping others is what makes me feel good.
When you get this dire diagnosis, it feels like everything should become clear; that you should change completely and come to a certain wisdom. I feel like I should be there, but I’m not. And maybe that’s okay. I believe that I will figure it out. Intellectually I know I have metastatic breast cancer, but emotionally, it’s like “Nope, uh-uh.” I don’t accept the statistics. I’m going to fight and keep pushing on.
Right now, I’m looking forward to going out to Lake Michigan with Dan and listening to the waves. I’m looking forward to putzing around on my friend’s pontoon boat. I’m looking forward to helping people and spending time with friends, family, and of course, with my kitties. Can’t forget my kitties! These seem like such small things, but they keep me going. So, appreciate the small things and the people in your life. Don’t feel like you need to be perfect. Advocate for yourself, find support wherever you can, and embrace whatever makes you happy!