Chemotherapy began for my daughter, Elaine, on September 26, 2019. A month had passed since we heard that she probably had cancer. She had been admitted from the Emergency Room with severe anemia, and she had ridden to the hospital by ambulance. When I heard about that, I packed a backpack and caught the flight from Huntington to her in Florida. The last few weeks had been interminable. We wrestled with doctor's offices and hospitals, with her employer and their insurance company. We fielded calls and messages from interested friends and family, and we struggled to deal with all of this essentially by ourselves.
At this point, there are serious financial questions bothering all cancer patients. At our first chemotherapy session, I met a lady who had spoken to another patient as she left. The lady who was leaving looked very frail and weak, but she had recognized the other lady as a teacher in child care classes she had taken while working for Head Start. She had insurance through her job, but Head Start did not renew her contract for 2018-2019 after she was diagnosed, so she lost both her income and her insurance. She was forced to apply for a medical card and to find providers who will accept Medicaid. Not every doctor or facility will. This lady had enough troubles with the cancer, without the financial complications as well.
Elaine had used all her vacation and sick leave as she weakened, so the time after her hospital stay was a time to return to her work from home job. She tried to work, she really did, but a job like hers is very schedule driven. She had to log on and stay on until a problem was resolved. She worked a ten hour shift, which required more strength and endurance than she had left. She ultimately decided to ask for a leave for the period of her treatment.
I was floored. I had listened to her leave her office to throw up in the bathroom next to it, so you might have thought I would have expected this. She had been dealing with the difficult policies on intermittent leave. The limited number of hours available during a pay period made this unworkable due to doctor's appointments alone. And doctor's appointments were not going to be the only reason she wouldn't be able to work at her usual efficiency. In her company, your numbers are everything. Elaine normally appreciated this, as she knew she was working with others who were also committed to serving the customer fairly. But if she slid, because she was dealing with nausea or fatigue or neuropathy or.... Well, it wasn't going to be good for her career.
Elaine's company offered a very generous six month leave with 60% of her base pay. We are Elaine's landlords, so we could reduce her payment there. I would be staying here, buying all the food, and Elaine could continue to pay the utilities, car payment and reduced rent. It was going to be tight, but she wouldn't go into debt like so many in her position.
Every day nearing 5000 Americans find out that they have cancer. Each day about 1500 lives are lost to it. Those brave warriors fighting cancer need the support of every American to just get through the treatments which offer cure or extended quality of life. No life is too unimportant, every case is a son or daughter, a sister or brother, a mother or father. Their lives deserve better consideration. Health care and support services should be available to all of us, with a minimum of effort by the patients who are already coping with pain, nausea, and fatigue that the rest of us find difficult to imagine.
For me, leaving work was more than a financial decision though. It struck me that she was giving up so much more than money. Elaine worked from home. Her contacts with the outside world would be severed. It would be the two of us, alone, isolated by distance and circumstances from those who cared about us. Here, in Deltona,we know our immediate neighbors, and that's it. I don't even have a social media friend here. None. I have seen people I recognized in Wal Mart three times in the two and a half years I have lived here. They were all from the Food Pantry I worked in last winter while I was here.
We have visitors occasionally, but we also go many days without speaking to a human besides each other. We get calls from Ron, my husband, and video chats with my darling granddaughter, thanks to my daughter-in-law. I talk to other friends and family a couple of times a week. We do communicate on social media with friends all over the world.
Elaine's employer has provided her with a Life Coach who has worked with her for several weeks in weekly phone chats. It is valuable in letting her move through the process. Right now they are focusing on life after treatment.
We talked about creating Cancerland: The Board Game. We visualized it as a wander through the forest of diagnosis, before boarding the ship (Cancer) for a sail down a long and perilous river to the land of Cure. We began to isolate the events which would mark the way, the blessings and the pitfalls. before landing at Cure.
Today there is just one more treatment remaining for Elaine. There will be another PET scan in April. The nurse practitioner has advised us about the schedule of appointments through the next few years, letting us know that Elaine is likely to land at the goal of every cancer patient, Cure. That's a glorious thing!
