It’s a rainy day here in Central Florida…one that worked well with my impromptu nap this afternoon! It’s crazy to think that the week is already half over. I spent almost all weekend and a lot of this week “relaxing”. This really means that I’ve been too tired or uncomfortable to do anything. Thankfully my husband and little guy have been wonderful with taking care of me and ensuring my comfort.
I’ve consistently been draining a lot of fluid from my lung, which is drained every Monday, Wednesday and Friday. Last week ended at 850 ml, which was the amount drained again on Monday, and then 600 ml today. I owe a phone call to the doctor because Monday and today’s drainings hurt enough that I asked them to slow down and stop. I’m not sure if it’s close to the end and that’s why it hurts or if the tube is in a weird spot. It’s worth the ask, either way. The fluid causes discomfort and pain in my chest because it fills so quickly and in general, my back has been hurting a bit. I imagine this is also caused by the fluid but who knows.
My appetite is not awesome and I’m losing weight rather quickly because of it. This may be because of the mixing of chemo pills, Afinitor and Xeloda, so we will see how I feel during my week off, starting tomorrow. During my first trimester of pregnancy with Jacob, I had major food aversions. Everything seemed to upset my stomach and I basically lived off of cereal (this actually remained true throughout the rest of my pregnancy). Just the smell of foods would make my stomach turn. Even the times that I would crave something like crazy, I would eat it and immediately it would become unbearably unappetizing to me. This is reigning true now, only times about 10. Thank goodness for smoothies.
I’ve been able to get things done off of my to-do list, which helps me to feel accomplished, though my list is taking significantly longer to accomplish than it once did. I’m tired relatively quickly and often need to lay down after crossing a few things off. I’m grateful to be able to accomplish as much as I can, despite not feeling wonderful.
It’s frustrating. The pain, the discomfort, the utter exhaustion and the overall feeling of not being well…it sucks. Throughout most of the last year and a half, I have been able to push through the times that I’ve felt bad, knowing that I would eventually feel good again. I’m struggling with that right now. The times that I feel bad are becoming more frequent than the times that I feel good. And that hurts. I don’t like that. Despite putting on a smile and going out to do something, I am finding it harder and harder to force aside the feeling of discomfort. It’s frustrating because I want nothing more than a sense of normalcy, for my family to feel comfortable going out with me and enjoying our time together, rather than worrying if I am doing ok. I know they will worry either way, it’s just hard to come to terms with the fact that my new normal changes by the day.
Tonight Jacob asked me if he could bring me to the doctor to feel better. While his innocence warms my heart, it stings for him to know that I’m not feeling well. I told him that I went to the doctor and have medicine to help me get better. He squealed in excitement at that and hugged me big. He exclaimed, “Yay!! You get better! Did you see Dr T?” I laughed at his reference to his pediatrician (it amazes me what he remembers!) and held back tears, knowing that I will never get better despite his excitement.
I don’t share this for pity or to cause concern. I am not giving up and I know how very blessed that I am – if the last week has shown me nothing else, it’s that I am truly blessed. I share this because it is the reality of how I feel in this moment. Cancer sucks. It’s not all pink and frilly, sprinkled with rainbows & butterflies with a dash of survivorship. It’s constant pain, a forced smile and a lack of appetite. It’s a hope for a good day, the need to not have to nap, and to sleep through the night without waking up in pain.
It’s not letting my family see the struggle or witness the constant discomfort. It’s being afraid to make plans for the future, out of fear of how I will feel. It’s wondering if I will truly feel worse than I do during my worst moments now.
But, I will push all of those thoughts and feelings of discomfort aside. I will hug my boys and snuggle them to sleep. I will watch them breath deeply with sleep, knowing that for now I am blessed to wake up by their side and embrace another day with them. That, in itself, is one of the biggest blessings of all.