By: Leah Taylor
Before being diagnosed with cancer, I could not fathom what it would be like to live with cancer. I had preconceived notions about it. Even with an aunt being diagnosed with cancer when I was fourteen, I lived so far from her that her experience wasn’t on my screen. My concept of cancer was heavily influenced by the movie Brian’s Song. I honestly had no clue. None. What follows is a rough glimpse of my experiences on September 18, 2018.5:45a.m. When I woke up, I turned on the news to catch up with what is going on in the world. I make a cup of coffee and spend 30 minutes slowly getting oriented and mapping out my plan for the day. As a list maker, I know what today will entail. Having a rough plan helps me keep things on track.7:30 a.m. I take a shower.8:00 a.m. My phone alarm rings. It’s time to take my oral chemo. I take it, then return an automated text I receive from my treatment center to help track my compliance. Even though this is not my first thought of the day on cancer, it’s the most insistent. I know my treatment options are limited, I must make every effort to wring every possibility out of this drug. My situation is outside the norm, by far, for most breast cancer patients. This means that even the option of a trial is slim. I don’t like it, but I must accept it. After completing this morning routine, I rise out of my very familiar recliner to iron my clothes. The news continues to play in the background.10:20 a.m. I start my long drive to Fort Worth’s Harris Methodist Hospital. I have been receiving hyperbaric treatment at the outpatient wound care clinic to attempt to close open cancer wounds on my chest for about two months. I turn up the local K-Love station. The old rock and pop they play makes the drive less lonely and helps to drive out the nagging dark thoughts that are worse on a beautiful day.Why does a beautiful day seem so much more difficult? I think it’s looking at a deep blue sky, perfect cirrus clouds, and a wide view of the breathtaking landscape that makes me wonder how many more of these days I greedily want to experience. I try to suppress my overwhelming feelings of missing my kids and grandkids when this disease finally overtakes my body. They are the hardest part of this whole thing. They make my world go around.11:45 a.m. I arrive at the wound clinic. I undress and put on the supplied scrubs. Susan is one of the nurses. She has helped make hyperbaric treatment more bearable by recommending movies to watch while I am a captive audience. Today, she puts in The Pursuit of Happyness. Thankfully, the hyperbaric tubes have tvs to distract from being in a pressurized tube for nearly two hours. This treatment makes it harder to keep my thoughts positive. I have been noticing an increasing claustrophobia that tends to be easily triggered after many MRIs, CTs, and now hyperbaric tubes. And, every time the door closes, I am reminded that this is not a typical experience and I don’t live a normal life.2:15 p.m. I had my weekly appointment with Dr. Smith and the termination of my part D drug coverage dominates our discussion. She tells me that somebody lost their job over putting me, a stage IV cancer patient, in a terrible position by canceling my drug coverage for some odd reason that does not ring true. The culture she sent off last week indicated the MRSA is rearing it’s ugly head again. We discuss which drugs are shown on the sensitivity and what I can afford until my Part d coverage reinstates on October 1, 2018. I quietly wonder if Humana will reimburse me the money they received for my September coverage?4:15 p.m. I am finally waiting at the elevators heading to the parking garage to make the drive home. Dr. Savage shaved off part of a nagging area of skin that refuses to close. She sent the specimen to the lab to determine if said skin is cancer or benign. She also ordered another culture due to the MRSA that refuses to relent. Her bedside manner, which is humorous but professional, with no hint of
superiority is refreshing and helpful. But, most importantly, I trust her and her staff with my complicated case.6:15 p.m. I arrive home after battling a weird bottleneck on 377 that confuses me. Why would T- dot allow a 3-mile backup on the single best artery to rural Granbury and Stephenville? My crazy rescue Chihuahua, Pepe, greets me with pure enthusiasm as I walk through the door. His obvious psychological issues from being abandoned a year and half ago, makes him both a perfect project for a non-dog lover and a great companion to keep me from being lonely. He fills a void I never knew existed in my life. Everyone should experience the absolute love of a baby or a dog sometime in their lifetime.6;30 p.m. I make a quick dinner of instant Chinese noodles I discovered. They taste decent. And, it’s a quick way to get something to eat when cooking is the last thing on my mind. It’s probably not the healthiest idea, but it works.7:00 p.m. My phone alarm rings. It’s time to take my chemotherapy again. I also take the antibiotic I am taking for this stubborn infection. Between my pain meds, chemotherapy, antibiotics, and a few other meds, I take far more medications than I ever dreamed I would. I sure didn’t think my life would turn out like this: meds and doctor’s appointments. But, my eight-year cancer experience is longer than many people get, so I am grateful but dismayed. It is so odd how those two emotions can coexist.8:00 p.m. A phone call with my son, Jordon, discussing a pop up concert with Blake Shelton at Billy Bob’s on Thursday leaves me frustrated. There is no logistical possibility to get the handful of wristbands needed. Somebody wasn’t thinking of people like me, that don’t have the energy to stand in line for a wristband. And, it leaves out a lot of people who work. Oh well, maybe we can find another event to attend, soon.
8:30 p.m. Another phone call with my cousin, Kristy, is a discussion of a possible family reunion in Gatlinburg we would really like to facilitate before I resume IV chemotherapy sometime in October. We have been discussing this possibility for about three weeks, with Kristy helping me apply to an adult wish organization. We both know with treatment options are becoming very limited, hospice is looming closer. If this doesn’t happen very soon, chances are increasing that it won’t happen at all. The size of the cabin we need with our large family is so costly, without outside intervention, it won’t happen. Getting over the two large barriers of time and cost makes this reunion in Gatlinburg unlikely. I make a conscious decision to put it out of my mind. Cancer treatment over eight years has decimated my finances. Knowing I am not alone is little comfort. Some people dream of cruises, some of trips to Europe. I would just like to spend two or three days laughing, playing cards, and telling family stories with my extended family. And, doing it in a beautiful place is icing on the cake. But, part of being an adult is understanding you don’t get everything you want.10:00 p.m. I take pain meds to help fight off the burning pain from the area on my chest Dr. Savage worked on today. I will wake up three more times over night.
