March 20, 2018
4-time cancer survivor: ‘Don’t delay the checks’
BY Matthew B. Johnson
Between 1995 and 2009, I was diagnosed with four different types of cancer. The first diagnosis didn’t really bother me. The second one hit me like a ton of bricks. The third one made me angry. And the fourth one was overwhelming.
For a long time, I wondered what was wrong with me that this kept happening. And I still haven’t found a satisfying explanation. But I’m kind of shocked by how comfortable I feel discussing it now. So, maybe that’s my mission: to talk about it.
How I learned I had cancer, four separate times
My first cancer diagnosis came about when I was living in Los Angeles. I’d noticed a slightly discolored area on my right cheek, but ignored it for several months. It got bumpy and I could actually feel it, so I saw a doctor. A biopsy revealed it was skin cancer, and I had a few rounds of radiation to treat it. That left me with what looks like an oddly shaped dimple on that cheek, but caused me no problems otherwise.
The second diagnosis came in 2003, when I developed a lump on the side of my neck. It grew to the size of a golf ball over about six months, but I blew it off, too, at first. My younger brother had had a marble-sized growth removed from his hand years prior, which ended up being a cyst. I figured mine was, too. But it turned out to be Hodgkin’s lymphoma. Luckily, chemotherapy put me into remission.
My third diagnosis came in 2005, when severe back pains made it hard for me to sleep. When I finally went to the doctor, the diagnosis was non-Hodgkin’s lymphoma, which can sometimes be a side effect of treatment for Hodgkin’s. Tumors were sprinkled all over my abdominal cavity. Some were pressing against the nerves in my spine. Amazingly, after going through chemo again, I was cancer-free.
My fourth —and hopefully, last — diagnosis came in 2009, when I went to the doctor with what I thought was a hemorrhoid. The doctor could tell it was something more serious just by examining me. And when the biopsy revealed I had anal cancer, I just fell apart. If it wasn’t for the support of my MD Anderson colleagues and my partner, Kenneth Holder, I honestly don’t think I would’ve survived.
Why I chose MD Anderson for my anal cancer treatment
Since I was working at MD Anderson by that time, coming here for my anal cancer treatment wasn’t even a question. Robert Wolff, M.D. laid out my choices: I could have radiation therapy, which is what he recommended, or I could go for the bag (a colostomy, which collects stool outside the body) by having surgery.
I couldn’t stand the idea of being tied to something 24/7 that would serve as a constant reminder of my cancer. So I chose radiation, and received a 28-day regime.
Borrowing strength from my family during anal cancer treatment
I knew that radiation was going to be hard, but it was brutal. The first couple of weeks, I thought, “Oh, this is a breeze.” But the effects are actually cumulative, and by the end of it, I was literally sleeping next to the toilet.
There are times when you can’t find the words to describe your feelings. That’s how I feel about my partner, Ken. I know that I would not be here if it wasn’t for him. I very clearly remember the day I looked up at him and said, “I just don’t want to do this anymore.” He said to me, “I didn’t wait my entire life to meet you to have you give up on me — I’m not fighting this by myself.” It felt like I was at the end of my rope, but something in his face and his words gave me strength to keep going, even though it seemed unbearable.
Looking ahead and lingering side effects
Because it’s now been almost 10 years since my last cancer diagnosis, my doctors believe my risk of a recurrence is very low. But I’ve heard that before, so I still get regular scans and quarterly or semi-annual exams.
My only lingering side effects are occasional bloating and diarrhea. My understanding is that my body is reacting as if it were currently receiving radiation, in a kind of muscle memory. But I’ve learned to live with it. I now know where every clean restroom is between here and Dallas.
It gets better
Today, I try to spend more time “smelling the roses,” by traveling and experiencing the world. As an MD Anderson employee, I also have a new drive and determination to help others obtain the same type of care that I received.
If there’s one thing that my experience has taught me, it’s don’t put off the “checks.” If something concerns or worries you, don’t delay looking into it. And if you are diagnosed with cancer, fight through the treatment, accept all of the love and care that you’re given, and greet each day wearing the rose-colored glasses. It does get better! And in the end, the fight is so worth it.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
TopicsBowel Management Non-Hodgkin Lymphoma Hodgkin Lymphoma Survivorship Radiation Therapy Skin Cancer Anal Cancer Chemotherapy
If something concerns or worries you, don’t delay looking into it.
Matthew B. Johnson