Steve Harding

From a Young Spouse’s Perspective

I was in my late twenties and had the world by the tail. I was engaged to be married in ten days to Martha and I was about to start my own company. I couldn’t wait to see what the future had in store for us—and then it all changed.

It began with my fiancée, Martha, pulling in the driveway as I was loading up my equipment to go play roller hockey. She wanted to talk. I could tell it was something important, but I had the guys waiting on me. I convinced her to let me go and that we would talk later that night (I’m thinking pre-wedding jitters). When I got home, her sister was at the house so we all hung out until she left. That’s when we sat down and she began to well up with tears. I’ve got my “wedding jitters” speech all ready to go when she announces that based on her medical experience, she is going to be diagnosed with breast cancer in the morning. Martha was 29 years old, had a Master’s degree in Clinical Nutrition and was weeks away from being licensed as a Physician’s Assistant. So I calmly change gears and began to convince her that she’s too young for breast cancer. That happens to old people so it’s got to be something else. If it is, by chance, then we will become experts and fight through it together.

The next morning I go to work and every time my pager goes off I begin to get that sick feeling. Finally the page I’ve dreaded most comes through. I pick up the phone and she gives me the bad news, telling me the doctor wants to meet with her right away. I rushed home, picked her up and headed to the doctor’s office.  All I remember from that day was sitting in the office crying as she asked questions and took notes. I knew that our lives would never be the same and we were in uncharted territory.

Martha had been diagnosed with Stage 3 Inflammatory Breast Cancer. She had a subcutaneous port surgically inserted and had her first round of chemo before our wedding.

Then the wedding preparations did not go as planned. Just days before the wedding we found out that our caterer had gone bankrupt. Since she was doing all of the wedding planning, I suddenly became the planner while she became the patient. The day of the big event, as a result of all the stress and surgery, she developed neck spasms, which caused her to turn her head to the left. She could not look at me if I stood on the right side of her due to the spasms. I arranged for a massage therapist to come in and loosen her up. When the doors opened for the ceremony our eyes connected and then the spasm kicked in, causing her head to turn to the left. Some in the audience thought it must be a Hispanic thing to not look at the groom’s side of the family as she walked down the aisle. I had prepped my best man and had two chairs ready if needed. Once she got to me I realized we would need to sit for the ceremony. So as the minister asked for everyone to bow their heads we slid two chairs into place and finished the ceremony seated. Fortunately, once the music and dancing started, the stress went away and she never had another spasm. Before the ceremony, half of the crowd had no idea what was going on and by the end of the wedding; there wasn’t a dry eye in the house. 

The two of us set out as a team to beat this terrible disease so that we could get back to the life we had planned. Being a homebuilder I quickly had to learn a whole lot about her treatment, which was like speaking a foreign language. As we began to do our research one of the first things we learned was that women in support groups have a higher survival rate. But the issues that we faced were very different. Being 29 years old and facing rounds of chemo meant she was going to go into menopause before turning 30, so we started our own group. We found two other ladies under 30 with breast cancer after discussing our idea with Martha’s doctors. Having a head start in the process of fighting the disease, we found it very rewarding to help others avoid some of the common mistakes we made early on—get a prescription for EMLA cream (a mixture of Lidocaine and prilocaine that acts like a local anesthetic), take your anti-nausea medication before you feel sick, listen and know when and how to take your meds. More importantly, we made friends and found individuals who could relate to our situation, helping to ease the scariness of the situation at hand.

We started with several rounds of chemo. Throughout the treatments we shared great laughs and tears. One day I shaved her head on the back patio.

The doctors were amazed at how well she responded to treatment. The tumor shrunk to the point that is was no longer detectable. Following her mastectomy she had no lymph node involvement, giving us great hope and optimism. But we knew her situation was serious, so, as a team we decided to pull out all the stops and have a bone marrow transplant. As we rounded the corner I thought radiation would be a cakewalk after everything we had been through. To my dismay, she found it to be a very sterile impersonal environment so I had to change my approach, adjusting my schedule to make sure I attended every session with her as I had done with her chemo treatments.

During her treatment, I was amazed to learn how high the divorce rate was among cancer patients. When the nurses would hear our story they could not believe it. My attitude was that I wanted to treat her the same way I would want to be treated. I guess my parents did a good job raising me. Goodness knows we had our challenges at times. Pesky infections would pop-up at 11:00 on a Sunday night, forcing us to go to the hospital for another all-nighter.  At one point I got so good at it that the nurses would ask me if I was a doctor when I would go over her meds and make sure we had signs posted as to which arm they could touch.

We finally got to go on our honeymoon eight months after the wedding and all of the treatment.

We were enjoying nine months of remission together when she suddenly felt a pain in her hip. After an x-ray we found that the cancer had metastasized to her bone. An MRI was suggested as the gold standard, which showed the x-ray as a false positive, bringing us both a giant sigh of relief. A couple of weeks later she came to visit me at work and after walking up a flight of stairs, she could barely catch her breath. When our eyes met, we knew the cancer was back and we were in the fight again as a team. 

This time her cancer was aggressive and her body was weakened from the original treatment. She found it difficult to get comfortable and I found myself staying up all night keeping her company and massaging her to help relieve the pain.  She only lasted six weeks and passed at age 30. As they say, “Only the good die young.” Even at her funeral, I had to be at her side, insisting on being the front right pallbearer.  

Following her death, Martha’s favorite oncologist, Dr. Rohit Kapoor of San Antonio, asked me to help him set up a support group for the spouses of his patients. Martha and I learned the value of support and I wanted this to be one of the legacies she left behind. We learned that there are all types of cancer; when you hear breast cancer you have to know which type. Most people just see the word cancer and freak out.

We fought a very courageous battle as a team. Martha taught me a whole lot about life at a young age. The power of the human touch, compassion for others and what is and is not important in life. To this day my family and Martha’s family get together every year to raise money for breast cancer and celebrate her memory. 

I am now married to a beautiful, compassionate woman named Tammy who serves on The Emma Jacobs Breast Cancer Foundation, Taking Initiative to Survive (T.I.T.S.). Emma’s foundation is important to me because it educates patients and helps them and their families pull back the fear “behind the green curtain” of the disease and makes the process much more palatable and understandable.

Barbara Perlick

I have never had cancer, but I almost died from it. Okay maybe that is an exaggeration, but if you are caring for someone who has cancer, that is what it can feel like. You spend so much energy trying to keep the real patient focused and positive that you absorb a lot of the bad stuff. At least that was my situation. Please don't misunderstand, I wanted to be her caregiver and would have it no other way (except of course I would wish my sister would have been spared from ever having to deal with the disease). Fortunately this story did have a happy ending.
I wanted to share some lessons that I learned, which will, hopefully, help all of those who are involved in caring for a loved one with cancer. Whether you are the patient or the caregiver, you are affected.
First: Attitude is everything. Every day is a gift for all of us. Why waste it?  I truly thought my sister and I would get thrown out of MD Anderson Cancer Center a few times. People would stare at us while we belly-laughed in the waiting rooms. Laughter is the best medicine.
Second: Don't ever let the patient go to an appointment alone. Before all appointments, I would sit down with my sister and compile a list of questions. I would take copious notes and read back to the doctor what I thought he or she said to make sure my information was correct. It was shocking how more often than not she heard more negative things than were actually said.
Third: Be an advocate. I would be the bad guy when necessary. Even though EVERY person at the hospital was extremely compassionate, I would be the demanding one so she wouldn't have to be. She really appreciated that.
Make a chart or timeline. When my sister first heard of her plan for treatment, it was overwhelming. There was chemo, surgery and radiation. I made a chart so she could see the progress and how the finish line was in sight. We would celebrate each phase as it ended.
Create a good support system for the patient and yourself. My sister had an amazing group of family and friends that helped with her children. Knowing they were taken care of gave her the ability to focus on herself. My family and friends were so helpful for my sanity. I spent all of my energy being strong for my sister. They kept my batteries charged and gave me the love and support I needed to keep going.
And finally, if you ever need to call 911, make sure you are thoughtful and have the patient put on a robe before four firemen and two EMS technicians enter the house. My sister has thanked me a million times for all that I did for her, but I am not sure that she will ever forgive me for her trip to the hospital, via ambulance, wearing a nightgown that looked like it came from Fredrick's of Hollywood. She could have appreciated the fact that they were all handsome. That was just a coincidence, though. You know how they say when you fly that you should put your oxygen mask on first and then help the people around you? Well, for the record I brought a roadie in the ambulance. I figured it was going to be a long night and I was correct. I did get a Diet Sprite for her though, after I finished my drink.