My journey from MD Anderson dietitian to caregiver
In 2013, my role at MD Anderson changed when my husband was diagnosed with stage three diffuse large B-cell lymphoma. Now I wasn't just a registered dietitian. I was a caregiver, too.
Seeing a new side of MD Anderson during lymphoma treatment
Every three weeks, my husband was admitted at MD Anderson for five to six days. Each time, I moved into his hospital room with him. I worked here during the day and went up to his room in the evenings. I ate here, showered and dressed here, heated my meals in the family lounge and made my morning cup of coffee here.
It was mentally difficult to "change hats." My eyes and ears were always in tune to his nutrition and the value it plays in treatment tolerance and recovery. Meeting some of the other caregivers on the floor and comparing notes was helpful, but at times it added to my worry and stress. I didn't want to hear any negative stories. I was trying to hold it all together and stay positive.
I had a great support system of family, friends, and coworkers praying and offering to help in other ways. The chapel was a special place for me to quietly sit and pray or just be calm. Sunday morning masses were also a huge comfort to me.
Fortunately, my husband tolerated his combination of drugs well. His side effects were minimal and well controlled. He walked three miles a day on the floor during treatment and was diligent with staying hydrated. Thanks to the steroids, he never lost his appetite.
We got through all six rounds of chemotherapy and doctor visits until it was time for the first post-chemo scans. About two weeks before that first scan, the scanxiety first hit me. I couldn't sleep, and I found myself needing to keep continually busy both at work and home.
My patients have scans all the time, so what was the big deal? I learned quickly how different it is to be on the other side of things. When you are the patient or family member, it means the world. Fortunately, the scans were clear and stayed clear for about two years.
My husband's stem cell transplant
Last fall, my husband's six-month scans showed the lymphoma had returned. We were in shock. In his typical positive, practical manner, my husband wanted to hear the prognosis, the treatment options and percentages of success with the recommendations. His only treatment choice to cure this awful disease was stronger chemo and then a stem cell transplant. Once again, I returned to living and working at MD Anderson.
The stem cell transplant process took about a month. He needed five million frozen stem cells taken from his blood. This involved painful shots to help his bone marrow produce the cells, then three trips to the Apheresis Center to have the blood circulated through an amazing, miraculous machine that extracted the stem cells. This time, his admission was to the stem cell transplant floor for 10 days of high-dose chemotherapy intended to wipe out his immune system and all of those lymphoma cells.
He was compliant with all of the mouth rinsing, medications, exercising and fluid intake until his body would not tolerate anything going into his stomach. He was weak and slept most of the time. There were continual IVs of fluids, potassium, magnesium, antibiotics and other supportive medications to prevent infections. He couldn't have many visitors, and I had to wear gloves, mask, and gown to be in the room with him.
The stem cells were infused similarly to getting a blood transfusion. Tolerating the stem cells was not a concern because they were his cells. After almost a month on the 18th floor, we were given the OK to be discharged to an apartment in the Medical Center area. Stem cell transplant patients are required to stay close to MD Anderson following the transplant, and our house was still too far away.
Life after cancer treatment Over time, my husband's energy returned. Two months later, we were allowed to return home. We continue to be cautious about infection risk, but can be around family and friends.
Life is almost normal, but there will always be the next scan, the next lab work, and the anxiety that comes with a cancer diagnosis. Fortunately, we have a great support system at home and, as I've learned first-hand as a caregiver, a great medical team at MD Anderson.