Being A Caregiver – S. Oxford Brentwood TN
It was the most honorable and fulfilling thing I’ve ever done. It also was the absolute hardest thing I’ve ever done.
My best friend and bandmate, Brian was diagnosed with esophageal cancer in June ’11. He’d had difficulty swallowing for 18 months or so and it was progressively getting worse. The tumor was near the top of his esophagus and at the time of discovery blocked about 75% of the passageway. It was deemed too large to surgically remove initially and radiation and chemotherapy were ordered to shrink it then we’d talk about surgery. First thing done was to put in the chemo port on his chest on the left side and a feeding tube through his abdomen since swallowing was so difficult. These two procedures were done at the same time. One night in the hospital and that was it.
Brian had no family here and was adamant they not be notified. He felt they had their own lives to live and didn’t have time/couldn’t afford to take the time off to come help and I said “I can handle it”..
Radiation was daily Monday thru Friday (except holidays) for 5 weeks. Each radiation treatment lasted about 45 minutes. Chemo was every three weeks and it took upwards of 6 hours per treatment. Chemo was set up first on a Thursday and Radiation started the following Monday. The first course of these two treatments was to last 6 weeks – radiation for 5 weeks and three chemo drips. Then he’d get a month off to recoup.. I went with Brian to the first session of each then the following treatments and the rest of this course, he drove himself there and back. On chemo days I’d go over and stay with his dog but otherwise I’d call or pop over in the afternoon each day to check on him. The chemo started kicking his ass the Saturday after his 2nd drip. Nausea, the squirts, fatigue, no appetite.. It would last til Tuesday or Wednesday then he’d feel pretty ok for two weeks.. The radiation didn’t seem to affect him adversely until that first “off” period. Hair said bye bye, fatigue became a monster and his throat was on fire..
After that 3rd round of chemo and 5 weeks of radiation he was on treatment vacation. A week into that it became apparent I was needed full time so I packed up some clothes and toothbrush and moved in.. He was miserable. Needed help getting out of bed, getting to the bathroom.. He came to detest “eating” Ensure thru a tube into his stomach.. By this time a few close friends realized something was up but they were sworn to secrecy.. One of those in particular stepped up often to spell me for an afternoon and give Brian someone else to talk to, too..
It was wearing me down.. I can see that now, but I couldn’t then.. I was too focused on Brian. Sorting medical bills and insurance claims and managing medication (there was a LOT) and trying to get him to smile and feel better. I had tunnel vision.
That month was good for Brian. He felt pretty tolerable the last three weeks or so and his spirits was up..
After that “off” period of 4 weeks xrays were taken, measurements done. The tumor was shrinking as it was hoped but still too large for surgery. So, round two was ordered. Same radiation schedule and same Chemo schedule but with different chemicals.. The 1st chemo drip laid him out. Energy immediately sapped and he wasn’t able to drive himself now.. This round of treatment was identical to the first except I was driving and he had few if any “good” days.
Now it is November and round two is done. There was a little more shrinkage of the tumor but still not enough. To remove it and be sure they didn’t miss anything his voice box, part of his trachea and the flapper thing that closes off the trachea to keep liquids and food from entering the lungs would have to be removed. The risk of aspirating something into the lungs was high to say the least. Pneumonia would set in and in his condition he couldn’t fight it, it was thought.. Two surgeons from Vanderbilt Hospital as well as one from the Mayo clinic were consulted. All advised against surgery. As a matter of fact, two said they simply wouldn’t do it. So, back to oncology we go and we’re told they threw the best stuff they had at it in round two and asked if Brian would like to participate in a trial. It looked promising and, given, it was do the trial or do nothing but wait, Brian elected the trial. It was after the first of the year before that started – talk about paperwork JEEZ… More xrays and measurements done to establish the baseline for his part of the trial. The tests revealed the cancer had spread to his liver, lungs and bones.
This trial round would have no radiation component. It was chemo only and was scheduled for every two weeks. He started the second week of Jan and he rallied! It was amazing! He felt good.. Well, not good like you and I know but good for someone fighting cancer.. It was short lived though and when that feeling began to fade it faded fast! Plummeted is a better word. He was in a wheelchair by the 1st of Feb. On his 4th treatment of the trial chemo – mid March – he was too weak. The trial was ended. That was a Thursday. Appointment set with main oncologist for the following Thursday..
Brian’s brothers had been emailing and calling and at first he’d write back saying all was well and he phone was buggy that was why he wasn’t answering.. The Monday of the week we were to see the Oncologist one of his brothers wrote to me.. I could keep the secret a secret no longer. I spilled all the beans. Brian was dying right before my eyes. He was sleeping 18 hrs a day now. His brother arrived at 9 pm that Wednesday and Brian was already in bed. I hadn’t told him I’d told his brother who was sleeping in the next room.. That Thursday morning I woke Brian as usual and as I was helping him up to the chair to the pot and to get dressed for the doc appt, I told him that Tommy was there.. He smiled and said “thank you”. He saw my relief cuz I guess it was obvious.. He was happy to see his brother and I think it lifted his spirits..
When we saw the Doc he was shocked at how far Brian had slid.. Hospice was ordered. They came Friday.. Another brother arrived Saturday. And another Sunday. I stayed. I was happy to have the help and and was so very protective of Brian at the same time, I think I pissed off a couple of the brothers.. Sunday March 19th 2011 was an unusually warm day and we were all outside on the screened in porch, Brian included.. Was was not able to talk above a whisper but he talked and the brothers bonded.. It was beautiful.. About 5 pm we went back in and Brian settled into his favorite chair and dozed off.. He didn’t wake up again.. About 7pm, while Tommy & I was in the room watching tv, we heard Brian say, “home? This is home?” Tommy and I both said, “yeah, this is home” and he said “ahhh ok…” and kinda smiled.. at 12:02am March 20th, he took a big inhale of a breath. Head went back, eyes opened a bit and there was no visible or audible exhale and he was gone.. I think he left his body at 7 when he asked “this is home?” and his body lived on another 5 hours..
I had no idea of the effect it would have on me and I still don’t think it’s done… I had 3 months to process the last 9 months of Brian’s life, which passed like a blur, when my Mom was diagnosed with the big C.. She lived 6 months before dying at home. The treatment for her was chemo only. I had plenty of help with Mom. I, having just gone thru it, was considered the expert.
My Dad and Sister were the primary caregivers for Mom and I found myself looking after them more than anything.. Caregivers need care too.. I’ll say that again, caregivers need care too.. I wish I had some advise on how to prepare for that role in life. I could say “ be sure to take time for yourself too” but I know from experience, I could not take my own advise. Nothing else in my life mattered. I was laser focused on taking as much stress off those going through the horrors of cancer treatment as I could. Nothing else mattered.
S. Oxford – Friend of Ashley’s Voice