Daughter of Cancer Patient: Beth’s Caregiver Story

I still had my break downs, but I didn’t want to be a basket case all the time, so I kept myself busy. There was never a time a time that I didn’t do too much. I was always doing something.

Cancer can make you really angry. It’s okay to be mad. It’s okay to have feelings. I chose to get my anger out in positive ways.

Beth Pauvlinch

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Diagnosis

Your mom’s first symptoms

My mother found the lump in April of 2007. She buried her head in the sand. My great grandmother had breast and bone cancer and had gone through horrendous treatment back in the 70’s. My mom swore from that time on that she would never get treatment should she get cancer. 

Once it started to get worse, it was creating pain. She thought, ‘I need to tell someone.’

She did. She told me. This was about 18 months later. This was the worst news I could’ve heard from my mom and best friend. We were so close. 

She wanted to get through Thanksgiving before we did anything. I talked to some friends and decided that going to the ER was the easiest way to go since she didn’t have any insurance.

We went in December, and it took hours of waiting, but that was when she was first diagnosed. She got diagnosed with stage 3 breast cancer.

How did you two process the cancer diagnosis

I don’t think it affected her as much as it did me. She still had it in her head that she wasn’t going to receive any treatment. She actually told the hospital that.

The doctor said, “It’s going to progress, and if you don’t get treatment for the cancer itself, you’re still going to need palliative treatment to manage the pain.” I tried to encourage treatment. 

I did what they tell you not to do. I researched online. I found this absolutely horrific picture of a woman who had breast cancer and didn’t do anything about it.

It was so traumatic to me, and I talked to my mom about it. I begged her to just at least see some doctors and see what options were out there. 

How did you handle disagreeing about treatment

I always knew that it was her body and ultimately her decision.

My aunt and I gently persuaded her into getting treatment. She was willing to at least try it out after she started having pain. 

Ultimately, she was glad that she went through treatment. It wasn’t as bad as she thought it would be. As much as I didn’t want to lose her, she didn’t want to leave me.

Going Through Treatment

What was the treatment plan

Chemo first and then a mastectomy. They wanted to shrink the tumor with chemo before surgery because it was so large. After chemo, the surgeon said it had shrunk 95%. 

We went to the oncologist first, and he did all the testing and preliminary things. Then, he sent us to the surgeon. The surgeon was absolutely incredible. I can’t even begin to say how great he was. 

He walked into the room, shook my hand, shook my aunt’s hand, and looked at my mom and said, ‘You get a hug. I’m going to be with you every step of the way.’

We had a benefit for her, and it was the surgeon’s wedding anniversary, but he still came with his wife.

How was the mastectomy

She was so nervous. We were sitting in the lobby filling out paperwork, and she was crying. It was just the fear of surgery and then losing one of the most feminine parts of her body. 

They took both breasts and 17 lymph nodes under her arms. She ended up getting lymphedema, so we had a specialist come to the house during recovery to help her with stretches and workouts to keep all her function.

Your caregiver role at appointments

When she was diagnosed, we immediately went to the lawyer and took care of everything. She made me her power of attorney, and I was authorized to make medical decisions and all that. 

The doctors that we had understood the relationship that my mother and I had. They were very open with me. They didn’t just listen to her questions and concerns, but they also paid close attention to mine.

Areas you focused on supporting her

I was there for just about every appointment. The few times I couldn’t make it because I had to work, my aunt would go, and I was texting her the whole time.

She knew the love that I had for her and that she had for me. After I turned the blog we wrote together into a book, the main thing people mentioned was the overwhelming love throughout the whole thing.

Second cancer

She went through her treatment and she finished with breast cancer. Everything was fine for about a year.

Then one day she got a call from the oncologist, and we found out she had pancreatic cancer. 

It wasn’t the breast cancer that had spread, but it was a second primary cancer. It had already spread to her liver by the time they found it. They gave her a few months to live, and they called in hospice.

How did you process the second diagnosis

To her, it was nothing. She called me on the phone while I was at work. She said, “Are you inside or outside?”

I knew that was bad, so I went outside. She told me and I left work. I wasn’t okay. I sat on the curb and lost it. 

I tried to get myself together. I started closing things down on my computer. There wasn’t much privacy because it was an open office. My supervisor came over and said, “Beth, just go home.” She had known we were expecting a call, so she was very understanding.

Sharing Your Experiences

Starting the blog

That was my baby. I mentioned that there was some turmoil in my childhood. How I dealt with that was journaling and writing poetry because there wasn’t really anyone I could talk to about it. 

I thought, “I’m going to start a blog. That way, I can get my emotions out, and we can keep family and friends informed.” I suggested that my mom contribute as well. She was hesitant and said she couldn’t write. She did finally cave and start contributing. 

It has real, raw emotions, comedy, and love. It’s unique in that it’s from both perspectives of the same event.

How did that transform into the book

I sat on it for a while. She passed away in 2011. In 2017, something hit me, and I thought, “I think this could help other people.”

I just decided to figure out how to self-publish. It took me a long time. I knew nothing about it. I had a professional do my book cover, and he did it free of charge because he believed in it. That was touching.

What’s one thing you hope readers take away from the book and blog

I just hope that it shows them that they’re not alone. Everyone’s cancer is different, and it doesn’t even have to be cancer. It’s about how patient and caregiver interact with one another. 

I hope the book can show people that it’s okay to be angry. There’s a lot of things as a caregiver that you don’t want to say out loud. 

It’s important to know that if you’re thinking thoughts, you’re not horrible. Sometimes, it can feel like you’re just sitting around waiting for your loved one to die.

At a certain point, there’s nothing more you can do for them, and you just have to be there for them, and that’s okay. You’re not wrong to feel that way. Sometimes, there really is nothing more you can do but be there for them.

Emotional and Mental Impact

How did the experience affect your mother/daughter relationship

I don’t think it really affected our relationship too much. She had always been the one to do the grocery shopping. I’m not a typical woman in the way of shopping. I hate it. I don’t go grocery shopping or shopping for clothes. I do not like it. 

I took that over when she got sick. She made me mad a few times because not only would she tell me what she wanted, but she would also dictate where I went to get it. 

I laughed a lot of it off because I knew she was sick, but just because she had cancer didn’t mean I couldn’t still get ticked off at her every once in a while.

Managing your emotions

I tried to be really strong. I felt like I needed to keep it together, but I didn’t want to appear so strong that it seemed like I didn’t care. I needed to show some emotions. 

There were times I would break down because I couldn’t handle it anymore. It just wells up sometimes even when you’re trying to be strong.

They did an ultrasound of her heart at one point to make sure it was strong enough for treatment. As I watched the ultrasound, I kept imagining when that heart would stop beating. That was a really hard day.

Did it help your mom to see you express your emotions

I think it did. I think when I was at my weakest, that gave her the motivation she needed to find strength and be strong for me. We traded like that. If she was having a hard day, I would pull myself together and encourage her and vice versa.

What was the hardest thing for your mom mentally or emotionally

Losing her hair was difficult for her. I don’t know why, but it seemed harder for me even. She never liked her ears, so all haircuts always covered her ears. When she started losing her hair, she had a real problem. 

Back in the day, when she was in high school, she used to wear different wigs. When she lost her hair, I took her to a wig store, and she had a blast there.

Several women there were also cancer patients. She got two wigs that were completely different from each other and any other haircut she had ever had. 

How did becoming your mom’s caregiver affect you mentally and emotionally

It was the hardest thing I’ve ever experienced. My mother and I didn’t have the best life growing up. She had chosen men who were alcoholics and weren’t good to her. I thought all of that was going to be the worst of it, but once this happened, it took the cake. 

It’s very draining.  I was completely taking care of her. On top of everything I had been doing all along, now I was taking on everything she used to do. We lived together even before this. I worked and she made sure the house was clean and did the grocery shopping. 

Did either of you ever feel isolated

For a while, she would spend all day long in her bedroom. I would try to go in and talk to her, and it didn’t seem like she wanted me there, so I would leave.

That happened more times than I felt like it should have. Of course, she was depressed. She was strong and brave, but it’s still very scary and sad. 

Those moments hurt my feelings, but it wasn’t her fault. I just felt isolated and like I couldn’t help her.

How did you cope with the hardest moments

My family has always used humor to ease pain and suffering. We had a lot of laughs and jokes even in the face of cancer.

Support

Getting outside support

It was just a lot, and I’m not the type of person to ask for help. I’ve never been that way. I didn’t want people to say, “How can I help?” I was always going to say, “Oh, I’m fine.”

Instead of asking how to help, just help. Just say, “I’m bringing you dinner.” Even better, just bring dinner over. That way, I didn’t have to ask.

Balancing staying busy and not doing too much

I needed to stay busy for my emotional stability. I needed to keep going and going because if I stopped, I knew I would lose it. I still had my break downs, but I didn’t want to be a basket case all the time, so I kept myself busy. 

There was never a time a time that I didn’t do too much. I was always doing something. Cancer can make you really angry. It’s okay to be mad. It’s okay to have feelings. 

I chose to get my anger out in positive ways. I had three tree stumps in my backyard. I put my headphones in one day, took a sledgehammer out, and I beat the hell out of them until they weren’t in the ground anymore.

It was accomplishing something and getting my anger out at the same time. There wasn’t really a balance for me, so I had to find ways to release. 

Financial toxicity

We were extremely lucky with some of the programs that the nurse navigators found for us. They paid for all the wigs. They would’ve paid for reconstruction, but we didn’t go through with that. My mom didn’t want it. 

One of the programs was a foundation within the hospital. There were times we would go in there, and they would pay a month’s mortgage or an electric bill. That was absolutely incredible.

In return, we were eternally grateful, and we would donate different pieces of art to their fundraising events. 

When my mom was really sick, I took family medical leave. That really put us in a bind because I had time off, but I didn’t get paid. I got really behind financially.

That was very stressful. Not only was I trying to nurse my mother back to health, but I was also worried about keeping a roof over her head. 

Cancer doesn’t wait until you’re financially secure. 

Credit cards paid my utilities. I just stopped paying my mortgage for a while. My mom finally got on disability, so we were getting a little bit of help there. We had some really good friends who would send a check from time to time. 

We did the benefit. We raised about 4,000 dollars. It would’ve been more than that, but it was pouring rain. A lot of people had to leave. That was disappointing, but we still raised a good chunk of money.

How others help support patient and caregiver

One time in particular comes to mind. My aunt and I wanted to get breast cancer tattoos, but we didn’t want to leave my mom alone, so a friend came over to hang out with her. We went out, got our tattoos, and had a couple of cocktails after. 

It was so nice for us to have a break while knowing that mom was still safe and someone was there to call if anything happened. It was a nice, safe break to remove ourselves from the situation for a short time. 

When she started to get really sick, I always wanted someone with her. I was really uncomfortable leaving her alone, so it was nice to have people who could be with her if I needed to go somewhere.

What are some things you’ve done in honor of your mom

I still struggle with depression because of not having her in my life. She worked for me and we lived together, so we were always together. 

At one point, I kept seeing her ashes on the shelf and kept getting reminded she was gone. I didn’t want her memory to be dull and sad, so I made a painting with all of her favorite colors, spread some of her ashes on it, and put a bunch of varnish over the top of it.

Now, that adorns my wall and it reminds of all the beauty in her memory rather than the loss. That’s a new product launch that I’m working on. I want to do the same thing for other people. 

After a while, I started turning our blog into a book. I actually got my first celebrity endorsement recently. That’s moving along now. Ever since the diagnosis and the loss, my perspective has changed.

I don’t want to work a regular 8 to 5 job. I want to make a difference in people’s lives using what I’ve been through to help them in any way I can.

End of life conversations

She wasn’t afraid to die. She didn’t want to leave me behind. She wrote her own obituary. She wasn’t scared of it. She talked to the social worker a lot about what it might feel like to die.

She was curious about what the process would look like. He said, “You are a lovely, beautiful person now. I truly believe you’ll go the same way.” 

When we would talk about it, I would tell her, ‘I think it’ll be whatever you want it to be.’

My heaven might be different than your heaven. She loves strawberries and roses, so I picture her running through a field of roses eating strawberries. 

We were very open about it. There weren’t too many things we didn’t talk about. There were uncomfortable things, but we still talked about them. Keeping communication open is so extremely important.

Processing your grief

The day that she passed away, that was the loneliest day of my life. We went from having all these people in our house to just me.

We had nurses, social workers, spiritual advisors, reiki practitioners, family, and friends. Then it was just me and my dog. 

When my mom was first diagnosed, we discussed suicide because she didn’t want treatment and I didn’t want to live without her. After I lost her, the thought came back.

Then I looked at my little dog, and I thought, “I can’t do that. Who would take care of her?”

She was a reminder to me that I had things in this world to accomplish. I had to use this experience to help other people.

Barbara Kivowitz, Caregiver Expert & Author
“A critical ingredient we need throughout our lives in all circumstances is hope. Hope can exist and persist even when a cure is not possible. You can attach hope to anything.”...

Beth Pauvlinch, Daughter of Breast Cancer Patient
“Cancer can make you really angry. It’s okay to be mad. It’s okay to have feelings. I chose to get my anger out in positive ways.“...

Kris Curl Johnston, Program Manager



Program Manager: primary contact for area oncologists and patients needing a phase I trial.
Experience: ~20 years
Hospital size: Large teaching institution
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