Elaine's first day of work

April 1, 2019

At first, it seemed like we were in an elaborate April Fool's prank, but this afternoon Elaine has finally resumed work. She did try to work late in August after her hospitalization, but it has been 7 months of no work. The day of the week was irrelevant in our world, since we don't watch network television or sports. The weekend meant a different traffic pattern if we ventured out. It's strange to see life in those terms returning to a day off, lunch break, back to work kind of schedule.  It's good, of course, because it leads to a fullness of life that Elaine has been without.

I remember my uncertainty about her life without work.  I knew that most of the contact she had with others was through work. Even her online social life centered on a pair of co-workers. I worried that she would become depressed without the buzz of activity centered on her job.

Seven months later, I guess I needn't have worried.  She went many days, maybe even a week here or there, without speaking to any human besides me. She texted and messaged, and she posted to Facebook and Instagram. That seemed to be okay by her.

She had a Recovery Coach through her insurance, and she worked with her in a weekly phone session to complete exercises designed to keep her focused and prepared to return to employment and a full life after disability. It was not specifically for cancer patients, so they worked together to make it meaningful. Through this, Elaine did complete some home improvement projects which have made her bedroom and office more enjoyable places to spend time. They also made her focus and take control.

Control was an issue. At first, Elaine was too sick to care. She had been forcing herself to go through the motions, but the signs of neglect were apparent in our house. She had even started ordering home delivery of microwavable meals. The boxes and empty plastic trays were piled on top of the stove just under the microwave. It had been too much effort to walk across the kitchen to the trash can. She never dreamed that she would take an ambulance to the hospital, and that I would walk in ankle deep pet hair to get to the kitchen. The day she was released from the hospital was the day I found a warning tag on our doorknob that I would be fined if I didn't mow the grass immediately. She neglected to pay for the water, so it was shut off and reinstated after a night without it. That's not fun when you are throwing up regularly.

Cancer controlled Elaine, so it became my job to keep the household going. Elaine  began this journey as a very sick woman who could do little besides sleeping or sitting in her recliner. She was very weak and could eat only a few bites or even drink only a couple of swallows of water. She was prone to motion sickness for the first time in her life. We traveled to doctor's appointments and medical procedures only. I kept track of those, and I still drive everywhere. Elaine tires so easily.

As her spleen shrunk, Elaine became more physically comfortable. She could eat and drink as she liked, and she began to gain, rather than lose, weight between appointments.  The motion sickness went away.  Elaine has had 2 root canal procedures while on chemo, and her improved dental health has helped too. As she improved in these ways, however, the side effects of the chemo increased.

Elaine lost enough hair that she eventually went for a buzz cut. She began to wear hats and  wigs (the party store kind in bright colors)  when we went out. We were very conscious of the need to avoid infectious diseases, so we rarely went to crowded places.  I even did all the grocery shopping. But we are fortunate to live in Florida, where winter means a few isolated 3 day cold weather events but with the compensation of hundreds of thousands of migrating birds to see from your car. Elaine and I, sometimes with her dad when he was in, traveled the back roads within an hour or our house, looking for opportunities to use her new camera for some more nature shots.

Elaine also took up loom knitting. Every member of our family received some knitted item, a hat or a scarf before that wore itself out. She began to make headbands and fascinators more recently. The glue gun sometimes seems an extension of her right arm! Elaine has read extensively since elementary school, but chemo brain left her unable to focus on fiction, so these craft projects have occupied many hours. We also enjoy board games, and she plays a phone game too.

Fatigue is Elaine's main medical complaint these days, along with stomach issues. It has been 12 days since her last chemo, and I am hoping that she will notice these side effects fading away as time passes. She has a CT scan tomorrow, and we expect that it will be clear and she won't see the oncologist again for three months. We will be pleased not to have the hour long drive nor any of the hospital-related details like parking lots and waiting rooms, blood draws and tests, traffic and empty gas tanks. We look forward to travel and home improvement projects that we can afford, as income returns to normal. Elaine and I look forward to long hikes and swimming in the springs and ocean when I return as a snowbird in the fall. Mostly we look forward to continued remission until the glorious day Dr. Chew tells us that Elaine is cured.

We have been blessed in so many ways. First we had each other and Ron. We have formed a posse for sure. Ron was in touch daily, even when he was in WV. He stayed with Elaine during two of my three short trips to see my new granddaughter, making that possible. When he was here, he was the guy in charge of keeping spirits up. We could count on him to get a smile from Elaine on even the darkest days.Our little family is close in a way we weren't before going through this together.

We have been blessed by so many family members and friends too. Those who took the time to visit are especially appreciated, as we are not located very near anyone we know well. Those who drove out of their ways, or who flew in for a time, will always be remembered. We appreciated the calls and messages too. And the cards....so many cards, even a few with a special monetary donation which helped Elaine get a bedroom tv for those very bad days.

The blessings were material as well. Elaine has great insurance, and the co-pays are minimal. Her disability pay and our ability to modify her rent payment has meant that she hasn't had to go into debt or on a search for providers who accept Medicaid. The house we share in Florida meant that we have been comfortably in our own home, not that I had to sleep on a sofa or that we had to share a bathroom. We have had reliable transportation and a beautiful neighborhood.

If your world is rocked by the news that you need an oncologist, it's a blessing to hear that your particular cancer is Hodgkin lymphoma, with its excellent prognosis, and that it's not in your bone marrow. There was no surgery to remove tumors, and there will be no need for radiation. Twelve chemo treatments were a lot, but it doesn't seem that way to the man I met in the oncology department who  was beginning a third round of chemo with his wife, beginning in 2013.

The ride through Cancerland has been bumpy! This mom is more than ready to shed the role of caretaker and to return to her home in the WV hills. She's also grateful that it was possible for her to be present during the trip, but she wants to see her daughter growing stronger and more capable. Then she can get busy spoiling her sweet granddaughter in WV.