Thursday, June 1, 2023
Home / Power Stories / April’s Story (Stage IV Follicular Non-Hodgkin’s Lymphoma)

April’s Story (Stage IV Follicular Non-Hodgkin’s Lymphoma)

aprils-story-non-hodgkins-lymphomaBeing diagnosed with incurable cancer was a really crappy way to spend my 50th year. No really, it sucked. When I turned 50, I was at a good – no GREAT place. Turning 50 did not intimidate me. I knew I was going to get along just fine. I spent the weekend hiking alone – no phone, no kids, and no husband. Just me, “50” and the dog!

And then, 12 days later I was slammed in the gut with a cancer diagnosis. Not just cancer – I had that before and beat it more than once. Cancer I can handle, but this was Stage IV and a ‘there is no cure at this time’ kind of cancer.

I went through the traditional R-CHOP treatment. In the middle of my R-CHOP treatments, my husband had an accident. He fell off of a ladder and completely shattered his heel. Surgery and 6 months of living in a rehabilitation facility while learning to walk again, meant that I was dealing with cancer, running my daycare (I worked all through my treatment), running our household, driving our daughter to work and school and trying to visit him a few times a week. As excited as I was to celebrate and turn 50, it was not shaping up to be a very good year.

The R-CHOP treatment didn’t work, so, I went through the clinical trial drug treatment. Then, 10 days before my 51st birthday, I found out it worked. I was in remission and sicker than when I was in chemotherapy. I had more problems and seemingly had to fight harder. The clinical trial drug side effects were really far worse than the R-CHOP chemo treatment had been. However, it worked, and the traditional treatment did not. I was in remission. And by the grace of God, I will stay in remission a good long time.

To help that goal, I would have needed maintenance chemo treatments every 3 months for at least 5 years. However, my body was just worn out from the side effects, so I quit 3 years in. Now, I will have to rely on whatever the researchers come up with next. In other words, I have HOPE and FAITH that as I muddle through all this, really smart men and women are working their butts off trying to find the magic potion that will cure me. Researchers have moved up on my list of heroes.

I wanted a tattoo for years and my 51st birthday seemed like a great day to get one. The very personal reward for a year of hard work and tough trials. However, being a cancer patient, I had to get permission from my oncologist. My blood counts were too low at that point in time and the danger for infection was too high. After several painful shots in the belly and oral pills the size of an elephant, the counts were coming up. On June 15th, 2011, everything looked good and I had permission to have my maintenance chemo and get a tattoo.

Next, I had to settle on the design. From the beginning I had wanted a butterfly, that much I knew. To me, the butterfly signified turning ugly into beauty. Overcoming. Surviving the process. The butterfly has to have faith that the metamorphosis from cocoon to a beautiful creature will happen. I have to have faith that I will survive my cancer, I will stay in remission. I will live more than the expected 5 years they told me I had when I was diagnosed. I WILL conquer. And like the butterfly, I will have wings that will allow me to rise above the cancer and the curses it brings me.

From egg, to larvae (caterpillar), to pupa (the chrysalis or cocoon), and from the cocoon the butterfly emerges in her unfurling glory. That is a massive amount of transformation. A cancer diagnosis causes a massive amount of changes and transformations for the lives it affects. While the butterfly is unrecognizable at the end of the transformation to where she was at the beginning; cancer did not so much change the physical side of me. My physical features did change during chemo, but I more or less transformed back into what I looked like before. Hair came back. Puffiness went away. However, emotionally, spiritually, and financially, I will NEVER, ever be the same again. The butterfly was the exact symbol I wanted to use in my tattoo.

I wanted to have the butterfly wings and then somehow to weave my cancer and my diagnosis date into the design. I imagined a cancer ribbon as the body and then have my date put on the ribbon. The date of my diagnosis is significant because that is the day I became a cancer patient, a warrior, and a SURVIVOR all in one. I wanted certain colors in the wings that had meaning to me. This was going to be a very personal tattoo. I was getting it for ME. I wanted it somewhere that I could see it every day, so I chose my left arm.

I had made all those choices and just needed to find a tattoo artist to make my idea come to life. When I met Dawn and I told her I wanted a butterfly, she told me that in the tattoo world, the butterfly stands for ‘transformation’. That confirmed to me that I had made the right choice. Sign me up for that butterfly because that is the exact idea I had on my heart when I decided on the butterfly!! We talked and she drew what was in my heart and then we went over it together and tweaked it until it was perfect.

Looking back at different time frames, it took my doctor about 30 seconds to say hello and to tell me she was so sorry, but the CT scan I had a couple hours earlier was indicative of cancer and that it appeared to be quite advanced. It took me a few seconds to let it sink in and then ask her point blank if I was going to die. It took me 2 minutes to dissolve into tears and then run to the bathroom and get sick. It took 11 months until I heard the words that I was in total remission. It took Dawn about 90 minutes to tattoo my butterfly on my arm – to remind me that I must always have hope and faith that whatever direction this transformation takes me, I can handle it. The date 5/5/10 was the beginning of a different journey…and Lord willing, it is far from over.

My most recent scans show that the cancer is returning. It is slow growing, so ‘watch and wait’ is all I am doing right now. It has been 10 years and 2 months since my diagnosis. At that time, I was told without treatment, I had 6 months to live. With treatment, I had 3 to 5 years to live. So, I am feeling pretty damn happy to still be here doing this dance of life. Every day I wake up above ground and breathing is a day to celebrate.

It was 3 years ago in a routine colonoscopy that cancer was found. I was graded at stage 0, so the removal of the polyp was the only treatment I needed. I now have to have colonoscopies every 2 years. That is OK with me. All these annoying and unpleasant routine tests are what is saving my life. My lymphoma was found at a routine mammogram. In 1993, cervical cancer was found during a routine pap smear.

I do not use the word hate because it is such an ugly word. However, I do use it when talking about cancer. I HATE cancer. It has tried many times to take me out. My faith has been my anchor through the hardest and darkest parts of this journey. I don’t know why I am still here. Why I have been able to live beyond the predicted 5 years. I do know that I am so grateful that I am still here. This is a gift that I do not take lightly. Getting older is not something we will all get to do. Just 2 months ago, I celebrated turning 60! Something I was predicted not to live long enough to do. Cancer sucks, but life is good. So very good.

Submitted 07/09/2020

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

Check Also

Deborah’s Story (Non-Hodgkin’s Lymphoma)

For months I fought fatigue, no appetite and rashes. I begged my doctor to take …

Leave a Reply

Your email address will not be published. Required fields are marked *