Living my life with Lymphoma.
Since my diagnosis, I’ve asked Brian several times how this could possibly have happened to me, and how did I get to where I am. Out of all my immediate family and friends, I was probably the healthiest. I eat organic food, I don’t smoke, I drink alcohol occasionally, I’m not overweight (much), don’t have any underlying health issues, and didn’t take any medications. I don’t have any of the risk factors or fall in to any prevalence categories for developing Lymphoma which include being male, 65 and over, having HIV, H-Pylori, Hepatitis, and farmers who are exposed to pesticides. But causes are complex and mostly unknown. I knew that Brian didn’t have answers for my questions, but every now and then, I just felt compelled to ask them out loud. He would just say that I’m going to get better and one day, this will all be behind me.
My response was always “God, I hope you’re right.”
Coping with feeling ill all the time and worrying about what was going to happen to me has been a challenge.
After the initial CT Scan that showed enlarged lymph nodes, I broke out all of my old DVDs of Will and Grace and watched all seven seasons. It took two months. It was not only a distraction, but I laughed a lot too. Then I began subscribing to Netflix and watched all of Grace and Frankie, three seasons of Glee, all the seasons of Orange is the New Black, and one season of Prison Break. I also watched some movies and documentaries. I was never a TV watcher, but was so glad to have it to interrupt my path of dwelling and worrying. I also read ten books.
Fatigue has been a constant. I’d go to bed at night, not sleep well, and never wake up feeling rested. I’ve adopted a living room recliner chair that has sat virtually brand new for four years because I never spent time in the living room. The chair is now molded to my body and I use it often without guilt.
I’ve had a lot of abdominal pain with this diagnosis. It was mostly tolerable and treatable with Tylenol, but I ended up in the emergency room four times in the middle of the night with severe pain. I hated going there because they would inject me with morphine, dilaudid, or fentanyl. The staff was horribly efficient and kind, but I knew what was coming. I just hated being drugged, although it did the trick. I was left painless. I swore I wouldn’t go back there after the fourth visit to avoid being drugged. So my friend suggested that I try ice packs when the pain increased. It worked really well. She also recommended that I bring a couple of ice packs to bed with me in a cooler. It was the perfect solution for getting through the night and avoiding another ER visit. I know now that I will never be a prescription drug addict.
Cooking and eating have been at the top of that list of challenges. I love to cook and eat, however there came a point where I couldn’t cook anymore, and I never felt like eating. I would get hungry, but nothing sounded good and anything I made had to be simple when I didn’t have help. I told Brian that he would have to get his own meals, but my mother was a different story because of her dementia. Then one day, it finally occurred to me…I ordered Meals on Wheels for her, and she loves them. This has taken a huge burden off me knowing that she has a hot meal every day.
I used to have a huge bowl of cereal where I mixed 2-3 different kinds, added raisins, chia seeds, and yogurt, and had it every morning for breakfast. For some reason, I can’t eat it any more. So, I have pie for breakfast for the first course, then spaghetti, pasta fagioli, or potato salad. I’m trying really hard to regain some weight, so I look for high calorie foods. I even got permission from my doctor to put butter on everything.
It’s a dream come true.