Introduction

I’m 53 years old. I’m a wife, a mother, and a grandmother. I enroll students for a university in Arizona. I live just outside of Phoenix in Mesa.

My husband has a motorcycle. We like to go motorcycle riding in the winter when it’s cooler because it’s so hot in the summer.

We have lots of kids around us and grandkids that we like to spend a lot of time with. We are a blended family of six children, ages 32 to 14. The 14-year-old lives with us. He’s our last one in high school.

Pre-diagnosis

Initial Symptoms

I had no symptoms that are typically involved with diffuse large B-cell lymphoma. I didn’t have any pain, fever, night sweats, or weight loss. I was told after the fact that it typically affects men who are over 65.

I thought I had a UTI. I had a little bit of blood in my urine. I went to urgent care and they did the routine test, gave me an antibiotic, and sent me home. That alleviated the blood in the urine for a few days then it came back heavier and with clots in it. That’s when we knew there was a problem.

It was completely out of the blue. I was healthy. We were newlyweds. We were about a year and a half into our marriage. We sold a house that we had as a rental and we were doing some work on the inside of it. We were celebrating my son’s birthday the next month.

Trying to Get a Urologist Appointment

The next day, I called a urologist and told them what my symptoms were. I had to call six of them because they were so busy. One of them was backed up for about six months and I thought, I can’t wait that long. That’s a long time.

I found an opening the next day, but it was with a nurse practitioner. I said, “I’ll take it. I will absolutely take it. That’s fine.” I saw her and gave a urine sample, but it looked like a cup of blood. She said, “Everything that we’ve tested looks very interesting so I’m going to send you over and we’re going to get a scan done.” That’s when I went, “This is not good.”

Getting Referred to a Cancer Center

I went over the same day to check in and I drove into the parking lot and it was Ironwood Cancer & Research Center. That’s when I thought, Oh boy, is this cancer? I didn’t know because she didn’t know and she didn’t tell me it was. She said, “We’re going to take a look at it because we don’t know what’s going on.”

Surgery to Remove Tumor

I had the surgery done and the urologist was amazing. He took out most of the tumor. He couldn’t remove all of it because it was attached to the wall of my bladder. He said if he removed it all, it would have perforated my bladder and that’s a whole different lifestyle for me so he opted to leave part of it there to protect my bladder.

Going in, they thought I might have bladder cancer and he said the tumor looked nothing like bladder cancer, which typically resembles a flower. We thought maybe it was a cyst. At that point, we thought, Wow, it’s not cancer! That’s great! We didn’t even think it could be a different kind of cancer.

After my surgery, the doctor spoke to my husband and my mom who had flown from Montana to help. He said, “We’re going to send this off for a biopsy.” I went home with a catheter for a week to help my bladder heal.

Thankfully, it was caught because Dr. Matthews told me this type is very aggressive. Had we not caught it when we did in February, I would not have made it to my birthday in September. It probably would have killed me before then.

I knew nothing about staging. I was stage 1, which means it didn’t spread to any other areas of my body so that was why they did the bone marrow biopsy. They wanted to make sure it wasn’t in my bones.

The scans were to make sure it wasn’t in any of my organs that were around my bladder. My bladder pretty much contained it all, luckily, because it could have spread to my liver, to my stomach, and all of those organs right there. My bladder held it in and that’s what saved me.

Treatment

Discussing the Treatment Plan

After we had determined my steps, I was referred to an oncologist at Ironwood Cancer & Research Center, which was a mile and a half from our house. I met with Dr. Monique Chang. I had my mom and my husband with me.

The minute I went in there, I said, “Look, I have a lot of life to live. Can we get started ASAP?” She said, “Oooh, you’re a spitfire.” And I said, “I am. This is not going to get me. We’re going to do this.” And she said, “Absolutely.”

We set up the appointment for chemo, but I had to have an echocardiogram, a port placed, and a bone marrow biopsy. They wanted to make sure that it wasn’t in my bones. Those were the next steps before my first treatment.

Side Effects of Cancer Treatment

R-CHOP was difficult. On my very first chemo day, we went at 7:30 in the morning and they told us it was roughly 5 to 6 hours. For us, it was almost 11 because I reacted to vincristine, which they call the Red Devil.

It was brutal. The first time I had it, I turned red and felt like my insides were made of lava. I felt like I was melting. It was that bad of a reaction. They slowed down the drip for that and that helped so I never had a reaction again.

In between each medication, they gave me Benadryl so I was completely groggy by the end of the day. Honestly, I’m not sure how my husband got me out of the car and into the house. I remember that being a very, very long day.

Many different things can happen to you. I tried acupuncture to alleviate some of the pain, but it did not work for me. They tried to put me on gabapentin and other antidepressants, but the side effects from those were so bad that I didn’t want to do them.

I never regained a period so I got pushed into early menopause and had heavy, heavy hot flashes. I would have them for minutes at a time for probably about six months, midway through chemo until the end of that year.

I still have hot flashes, but they’ve slowed down. I didn’t take any hormone replacement therapy after my mom went through what she did. I said, “Absolutely not. I’m not going to do it. I’ll naturally let my body figure it out.”

After chemo, I had a stutter so it took me a while to be able to talk again to where I could piece a sentence together. I would try to talk and it would not come out. That took me close to a year to feel like I could speak normally again.

Hair Loss Due to Chemo

My son was eight when I was diagnosed. We honestly weren’t going to tell him. I said, “We can hide it. I’ll be okay.” I told the nurse, “I’m not going to lose my hair.” And she said, “Oh no, sweetie, you’re going to lose your hair. You don’t have a chance to keep any of it.” I thought, I’ll be the one that does. It’s okay. I’ll be the one, trying to psych myself up.

I woke up one day and our white bedding had a big pile of hair. I started brushing it and the sink was full of hair. That was after my first treatment.

I cried for about an hour and a half, sitting there, pulling it, and combing it. I could feel where I had little patches and thought, I’m not going to sit here and feel sorry for myself because it’s hair. It’s going to grow back. My mom’s came back after her treatments. It will come back.

Managing the Side Effects

The neuropathy is much better. I use CBD oil; that was the only thing that relieved the pain. I take CBD gummies to help me sleep.

I’ve been suffering from neuropathy for about a year and a half. I was trying Tylenol, ibuprofen, and Aleve, and nothing was working. I thought, This is something I’m going to have to deal with. I’m alive. If this is the worst of it, I accept it. I’m still alive.

One of my friends and I were standing and having a conversation and she said, “Have you ever tried CBD?” I said, “No, I never really gave it a thought.” She said, “You should try these.” I thought no because in my mind, you’re going to smoke weed and I didn’t want all those weird side effects either. I thought, No, it was never my thing. I’m not that girl. I don’t want to do that.

She said, “There’s no weed in it. Let’s try it.” She had a little tincture bottle in her purse and she put two drops under my tongue. Within an hour and a half, the pain was completely gone and it never came back.

It’s not going to work for everybody. I got lucky that she suggested it because I probably would have never done it on my own.

I don’t have to have a cystoscopy or scans anymore. If I start to feel anything off, they told me to come back and they’ll check me out completely.

At the end of chemotherapy, they said that everything looked clear. November 6th was my final cystoscopy after chemo. That was when Dr. Matthews said there’s no evidence of disease so that is what I count as my anniversary date.

Dr. Chang told me that once you reach the five-year mark with this particular type of cancer, you are considered cured. I was thankful that she removed my port when she did because many patients have to keep a port in for at least a year or two after treatment. She was confident enough to let me get mine removed.

I said, “I can sleep on my stomach again. I don’t have this object protruding out of my chest and I don’t have people staring at me.” I don’t care if you stare at me now. This is a badge of honor, honestly. It was a good feeling to hear that there was nothing left.

When I saw Dr. Chang not long ago, she said, “You did it.” I said, “You helped me do it because there’s no way I could have done it alone.” She’s amazing. She’s in the Phoenix top 100 physicians and she’s incredible.

Life After Cancer

I had a hard time after treatment because I went into a bad depression, which made no sense. I’ve been used to this routine and being taken care of by these specific people. Then when you’re done and you don’t have that routine anymore, even your friends fall by the wayside. They check in once in a while. This is pretty common from all the people I’ve talked to so it’s not their fault.

When you think about somebody going through cancer and then they’re done with their treatment and they’re in remission, a lot of times people think you’re okay. We’re not okay.

I went through a lot of mental struggles. I had to go see an integrative oncologist. She was like a counselor. She tried to get me back to my new normal, which I was sick of hearing. I wanted my normal life back and it was never going to be like that again.

Words of Advice

I shared a lot of information on social media not because I wanted attention for what I was going through. I wanted to share my feelings and be honest with people. I had people messaging me, saying, “Hey, my mom just got diagnosed.” “My brother got leukemia.” I’m able to use what little voice I have to try to help those people get through it.

I’m a big advocate for speaking up for yourself. If you’re going through something, you have to reach out and let someone know. There is a ton of support. I found that out after the fact because I lost friends with cancer through my journey. You have survivor guilt plus depression plus not going to treatment anymore. I miss my nurses who were fantastic in my recovery.

You’re in a whole new cycle of life that you’re trying to navigate and you still have it in the back of your head. Every doctor’s appointment, every time I go for a scan, every time I have blood work done, I think, Something’s going to go sideways.