When you are diagnosed with cancer so many things run through your mind. Financial issues, death, the care of your family, keeping a roof over your head and paying the bills are just some of the things that you may be thinking about. But one thing I didn’t realize I needed to worry about was who would care for me.
Like most adults that are diagnosed with cancer, I was a parent. I had a three-year-old son at the time of my diagnosis, and he was my everything. My whole world revolved around this little human and I was content on it being that way. Until it couldn’t. I was 29 years old when I was diagnosed with leukemia. A devastating diagnosis to say the least, because my cancer was not caught at an earlier ER visit, it was basically killing me and I had just days left to live. I had to drop everything to try and save my life. Everything changed in the matter of 24 hours and I was the one needing to be cared for now.
When I was diagnosed with cancer my boyfriend and child’s father was the primary income in our home. He worked about 60 hours a week to provide for my son and I. Life was simple and going well, until the day we found out I had cancer.
When I found out I was sick, I didn’t know how to break it to my partner, so I called his mother and had her tell him. I just didn’t know what to say. My partner called when he heard the news of my diagnosis and wanted to come see me right away. An hour later, my son and my boyfriend came to the hospital to give me some support and lots of hugs. It was so wonderful seeing them, but I was so worried. I didn’t know what the future was going to hold, and I also didn’t know what the future of my family looked like. I was my son’s primary caregiver and the parent that was there 24/7 with him. I had him on a schedule and in play classes and cancer just didn’t fit into my schedule. Yet, I didn’t have a choice.
In the blink of an eye I was stuck in a hospital, fighting for my life and my boyfriend became a full-time parent and caregiver.
During my first round of induction therapy, I was stuck in the hospital for 33 days.
When I came home, I needed around the clock care. I was weak and fatigued and I didn’t have the energy to care for myself. I needed help with grooming myself, baths, making food, taking my medication, getting dressed, going to the food store and all the other everyday things that most people can do. I had to go to the hospital every other day to get transfusions also. Life was not easy, but with the love and care of my partner, we made it through. I was blessed to have a man by my side that dropped everything for me. He even put his career on hold to support me during the hardest time of my life.
Once we were told that I was in remission, we were happy to start getting our life back to “normal”. Unfortunately, I relapsed. Just six months after being told that I was cancer free, I was back in the hospital, but this time was different.
My oncologist wanted me to get a stem cell transplant to try and save my life. It was going to be hard for me, but it would also take a toll on my family. I felt insecure with needing this much help. I didn’t feel that it was right for me to ask my boyfriend to stay by my side during my diagnosis and recovery again. I was ashamed to ask for his help again, but he never left my side.
Recovery for stem cell transplant is brutal. Your body is basically learning how to function all over again— it’s not easy. The day I came home I was very weak. My body was fatigued and swollen, and I was in so much pain, I could barely walk. I was so grateful to have someone at home that was able to care for me each day.
When I came home from the hospital after my transplant, I was on almost 30 different medications. Each week, my boyfriend oversaw separating each medication in my pill box and keeping track of all my side effects. We had alarms set to remind us to take medications at certain times, and a journal that kept track of my temperature.
I had a Hickman port in my chest so each day that I would bathe I needed to be covered in plastic wrap. I needed help getting in and out of the shower, getting undressed and dressed and washing my body. I needed help making food and getting something to drink. I could barely walk, I was so weak, so I needed with help with each step I tried to take. Being that I was not able to walk, I obviously couldn’t drive. My boyfriend had to take care of all the things that I was used to doing myself. Cooking, cleaning, laundry, food shopping, pharmacy runs, travel and maintaining the household. He basically was sustaining life for us all by himself.
To this day, I still am needing help.
I am a year post transplant and suffer from chronic GVHD (graft-verses host disease) in my stomach, joints, mouth and skin. I have short term memory loss (chemo brain), carpal tunnel, herniated disks, spinal stenosis, rheumatoid arthritis, neuropathy and chronic pain. Each day I never know how I am going to feel when I wake up in the morning. But no matter how I am feeling or what needs to get done, I know I have someone by my side that cares enough to help me fight for my life.