Facing Incurable Cancer
Shelley Malinowski has a wonderful family, a full appreciation of life as she knows it, and metastatic cancer. She shares what gives her a sense of relief, what scares her, and what keeps her going.
Shelley is also the mother of Kristen’s dear childhood friend, Rebecca, and was their Brownie troop leader. When Shelley had her first breast cancer diagnosis, Kristen’s mom drove her to chemo appointments. Shelley, her family, and her home have been a fixture in Kristen’s life and remain one of the most nostalgic places for a visit when Kristen is back in her hometown.
Shelley: After you get a double mastectomy you expect your cancer won’t come back.
When I got diagnosed with breast cancer the first time in 2001, I had my lumpectomy. They didn’t have to take any lymph nodes and they got clear margins. And then 14 years later, I had a second kind of breast cancer. I knew right away I needed a mastectomy. Having the healthy breast removed was optional, but I’d made up my mind. I have no regrets.
After the mastectomy surgery, the doctor said she went deep to make sure nothing was left, nothing was in the lymph nodes, and she gave me an all-clear. There was a very low percentage for recurrence. But something microscopic was left, and now I have a lump. It’s in the same spot, and this time the cancer spread to my sternum, liver, lungs.
Brilliantly: I was so sorry to hear about this, Shelley. Did you start treatment last week?
Shelley: I started on Ibrance and injections. I take a pill, it's like birth control, a daily pill for three weeks, a week off, then three weeks again. I’ll be on it for as long as I'm on this earth.
Hopefully it will... I'm not sugar-coating it, I know my days are not gonna...I know,but I'm just hoping it extends my life.
Brilliantly: From the metastatic women I’ve known, I learned that it’s an ongoing process.
You’ll be on a treatment that works for a period of time, and then it stops working and they try another thing. It seems like you don't get one treatment that works forever. But you keep going. You keep living. The difficulty then, from what I understand, is psychologically being prepared for the moments where they're trying to figure out the new thing.
Shelley: Right. And having everyone else worry, too. My family worries.
Brilliantly: As a mom, I recognize that a big part of my job is making everybody else feel well, calm, whole. And when you’re sick, it must be extra difficult to manage worrying about your own health and your feelings as well as your family’s. You have a wonderful family, and from what I’ve seen, you understand how to compromise when needed and manage their needs in a really healthy way.
Shelley: I try. My husband and I have had our meltdowns since the cancer came back. He's pretty steady now, at least in front of me. I had a meltdown the other day at night. I start to cry sometimes, like when I'm bathing my grandson. Or I got a little choked up when I was on vacation with my daughters and their kids, and I wonder how many more times like that I’ll have.
Brilliantly: Do you think it makes you appreciate the time with them more?
Shelley: I'm practical. Like, enjoy today. Today I'm here, and I'm feeling okay. I know that the writing's on the wall, and I'm hoping treatments are out there that will help me stick around for a bit longer. A friend of mine has had bone cancer for quite a while, and it hasn't spread out yet. I'm hoping it works its miracle for her. She's got a bucket list: Europe, Australia, etc..
Anytime a friend of hers or a relative mentions that they’re taking a trip, she goes, too! And that works for her. I just don't have a list like that.
Brilliantly: You've always been that way, from what I remember. Practical, loving, and content.
Shelley: Yeah, you're right, you know me.
Brilliantly: Being here, and knowing you for almost my entire life, I can see how you love being home and how deeply you love your family. Some people try to use cancer as a teacher that helped us learn a valuable lesson, but you're not someone who needed to learn how to be happy with the gifts that you've been given and the life you’ve built.
Shelley: Exactly right. You're very eloquent.
Brilliantly: Thanks, I appreciate that. I’m just saying that I’m mad for you. I wish that there was a way to change this for you and your family.
Shelley: Well, I just finished an online genealogical survey of my family history, so we can better understand our risks. Then it's just a blood test.
Brilliantly: You’ve already had negative BRCA test results though, right?
Shelley: Yes, but I'm having more genetic testing. Because I’ve had cancer three times and my parents are still alive. It was difficult telling my 94-year-old mother what's going on, and filling it out that my parents are still alive and that my grandmother lived into her nineties on these forms! It seems like there must be something going on with me. I never felt like a victim though, never let myself feel like life is unfair. I mean, it's a little unfair. But I've never been angry. Some people really get angry. I've never done that, and I'm kind of a little proud of that.
I always had it in the back of my mind that I might not live as long as my mom and my grandmas, but it really is a shock to think that I might not even make it to seventy. I'm more sad than angry or anything else. The idea just makes me sad.
Brilliantly: Yes, I am sad, too. And yes, there are people who do get angry. It’s hard to find reason in things like this.
Shelley: To me I don't have the time to be angry. What I do have time for is substitute teaching, watching my grandson, and being with my family. I’d like to visit my sister in Oregon. Everyone is helping keep me going and not give in to, you know, doom and gloom.
Brilliantly: I am glad to hear that you’ve been able to keep living your life and doing things you like. You have a lot of life—a wonderful husband, children, grandchildren.
Shelley: Well, as soon as I knew what was going on, I got into a very practical mood. I take care of my parents' papers and finances, and the papers had been building up for a while.
After my diagnosis, I went on a whirlwind. I got in this very cleansing, cathartic space and I got stuff organized. I got stuff from my parents' apartment, knick-knacks and dishes to donate, cleared things out, dusted and cleaned. I wore myself out, but it felt really good. I found important papers for Tom about me and my benefits, and he got a little weird about that. He says, ‘Thank you but we don't need to think about that today.’ But, we kind of do.
Brilliantly: When Becca (Shelly’s daughter) called with an update about your scans, she said something about how you were “preparing.” I tried to tell her that it was important for you to do that, to feel control over some things in your life. It’s unfair to expect someone to be positive all the time and unrealistic. And, like you said, there is a catharsis in figuring out the things you can control during a time when you don't have control over so much. You can control getting all your paperwork organized, making sure you feel like your parents' things are tidy. And that feels good. Maybe it looks depressing to your family, but it’s important for you. My mom planned her own memorial service, unbeknownst to us at the time. I would have been devastated if I had known she’d gone to do that, but I understand now that she knew what she wanted, and wanted to plan for it.
Shelley: Well, I've told my kids, and I used to tell them even before cancer. I told them I don’t want anyone speaking at my funeral. And everyone's different. Everyone is different. I don’t want anyone getting up and saying 'My mother made delicious pies, and my mother...'
They probably won't listen. Everyone is different. I needed to tell them what I wanted though
I know everyone faces this differently.
Brilliantly: I can understand why you’d want control over that, whether it's one way or the other. It probably feels good to say, but is hard to hear.
Shelley: I think so. My mom, she's in shock. I’ve tried to explain to her that this isn’t curable. I might be around for years, but she says, ‘You listen to your mother. It's gonna be okay.’ So I let her say that. We’re at a time when we have to each say what we think and do what feels right. That includes me, too. I’m going to say more and ask more questions to my doctors, too.
I have an article about metastatic cancer and immunotherapy that I want to ask about. I know these studies are for very specific types of cancer that respond to that. And I just wanna make sure they're covering all the bases.
Brilliantly: You have a right to ask that. And I hope your team is understanding if you have extra questions.
Shelley: I'm hanging on to that it didn't reach my brain yet. It could, it could keep going, I know that. The bone cancer doesn't bother me right now, I don't have symptoms. My liver function is okay right now. And the cancer in my lungs also seems to not be aggressive. We’ll just keep doing scans.
It is surreal, I hate using that word, but it is surreal.
Brilliantly: Well, it is surreal. I think it’s the right word to describe what’s going on.
Shelley: Death has always freaked me out. I'm trying to find some comfort in the unknown. Tom, he says, ‘Shelly, were you aware of life before you were born?’ I said, ‘No.’ He said, ‘Well, it's like a cycle, you're going back to that whatever.’
Brilliantly: An unknown.
Shelley: An unknown, yes. Unknown feels a little scary.
Brilliantly: Any unknown is scary. We like known. I think that's why there are so many people who are very religious. It’s because there's a comfort in believing that you know.
Shelley: I'm almost jealous of that, you know? But, I’m doing what I can. I keep going. I’m living.
My treatments don't have many side effects, although the Ibrance causes thinning hair. I don't care what happens to my hair. Maybe, that's a big maybe.
The one thing I didn't wanna put up with, and I've done it twice, was when I had the chemo infusions and felt crummy for a few days and lost my appetite, my taste buds. I want to enjoy my food. At least I know that won't be affected.
Brilliantly: Good. It is those little things...Not that food's a little thing, food is a huge thing.
Shelley: Oh yes, it's huge. So is laughing. I’m trying to keep my spirits up.
I know these nurses from before, the ones giving me injections in my tush. I had to stand a little pigeon-toed because that does something with the muscles. One nurse commented,
‘You are so tiny. You have a nice ass.’ And I said, ‘Well, my husband thinks so too.’ And we all laughed. You have to laugh at anything. And one-two-three, it was done. It’s painful. It's like getting one of the old fashion big shots in your arm, but it slowly fades.
Brilliantly: Yes, I think humor is key, too. And feeling supported. You have such a great support system. You are lucky to have each other.
Shelley: Yes, we are. The thing that breaks my heart is thinking of him in this house without me. That's what made me cry so much in the beginning. I made him promise that my parents’ cleaning lady will come here and clean. And that he has to say yes when our kids want to help out with things.
My mother keeps saying, ‘Oh, he won't be alone, the kids will stop by.’
Brilliantly: I think people say what they need to say to make themselves feel better. Because your diagnosis affects everybody you love. We all need to find some peace, and you’ve done an amazing job of being an example for your family of how to find it.
Shelley: Thank you. Yes, Tom especially. He will do anything for me, he's a rock, but I don't want him to have to see all this stuff. I often ask him to stay home when I go to the doctor or treatment. And he says, "You just say the word and I'll be there with you."