Cancer on my mind...
I suppose when you work in a cancer center the actual thoughts of cancer never really escape, or take a vacation or diminish. They are pretty much always there, but, I don't live with cancer like our patients do, so feeling consumed by these thoughts don't regularly occur unless, well, unless one of our beloved patients dies...or two. Or when the newest 23 year young lady walks in the door to figure out how to prevent her cancer from spreading after having a bilateral mastectomy.
When I worked in hospice it was a common understanding that the cold weather, the holidays and seasonal trimmings brought with them a lot of funerals and really, really sad families. Maybe it's because family and loved ones are in a seemingly closer proximity and the opportunity to say goodbye is greater. I don't know. I do know I've said goodbye to a lot of people this time of the year. Why I would be surprised to see it on the other side, the treating side of cancer, again, I don't know.
I was talking with a co-worker yesterday about how difficult the last few weeks have been in our clinic. I told her that I know full and well how sick these patients are but for some reason, the simple fact that they show up every single week instills in me a symbol of hope. If they keep showing up they must be getting better, right? I'm certainly smart enough to know this isn't the case for a number of our patients. I know the doctor I work for is going to try everything she can for as long as she can and for as long as the patient is willing. In hospice team meetings I would get so frustrated when the young woman with young children would finally accept our care only to die two days later. I would think, "Where's the quality of life?! We could have helped her enjoy the last few months of her life with her family...instead she was spending 10 hours a week at the doctor's office and taking chemo, going home feeling horrible." I simply could not understand how patients - encouraged by their doctors - could fight such losing battles when there was an obvious alternative.
As much as I want quality of life measures to truly mean something in our fix-it-all world, I've come to realize that more often than not doctors are motivated by their patients. Specifically in breast cancer, new drugs aimed at fighting the disease come out weekly, sometimes twice a week. If there's a candidate in the clinic why wouldn't we offer these drugs? Many of our patients are current on the latest literature and ask whether or not they could benefit from a new trial. Why wouldn't they if it meant a possible longevity in life or a cure?
The difference in my life as a hospice worker and now is the patient. When I worked in hospice, more often than not, I met the patient through the family. So often the patient was already lost to the disease process and coherent conversations were a rare commodity. My job was to help the patient by helping the family. I knew this deep down, but a selfish part of me really wanted to connect with the person dying. Occasionally I was granted this opportunity and it only left me wanting more connections.
My job now has granted me this wish. I work intimately with our patients...most of whom are between the ages of 20 and 60 years old and all of whom have metastatic disease. Some of these ladies have been fighting their cancer for decades and some are just getting started. I see them, at first, weekly, then every other week, then in three weeks and well, the gap grows as they get better. The hardest part is when I haven't seen them for a few weeks and suddenly their visits become quicker in succession. 'Andy' was in every week for the last 6 weeks and then she died. She was only 41 and had been fighting her cancer for nearly 15 years. She had hospice care for three days. 'Sherry' was in twice a week, once for chemo and once to see the doc, for the last 5 weeks. Tuesday evening she became very disoriented and was rushed to the ER where she died. I had all of her paperwork and charts ready for her appointment on Wednesday. She fought her cancer for 20 years.
Both of these ladies knew my name. I was fond of their remarkable husbands who were at their side for every visit and treatment. I asked about their kids and grandkids. We talked about how bad they felt on some days and how much energy they had on others. I checked on them while upstairs in treatment when I had a moment to break away. They asked me how school was going and gave me hugs when they found out I was pregnant. I called their homes and spoke with the other caregivers in their life. I contributed to that sense of hope....that their struggle to fight their cancer every single day was worth the effort and the many trips to the cancer center, the scans and drugs, it was all purposeful. It was always, "Hello!" and, "See you in a couple of days."
I never had the opportunity to say, "I will miss having you smile at me on Wednesday mornings, despite knowing how miserable you are to be here." I never had the opportunity to say, "If I don't get the chance to see you next week, please know you will be missed." I didn't get the chance to say, "Goodbye." Or, maybe I didn't take it. All the signs were there and I couldn't ignore what the doctor was saying, what the scans revealed, what the lab reports reported. I knew death was imminent and I know these amazing women knew this too, and yet I couldn't bring myself to accept the inevitable. After all, they kept showing up every week and I kept believing that maybe we could make a difference. And maybe we did, but right now the only difference I see is in myself.
When I worked in hospice it was a common understanding that the cold weather, the holidays and seasonal trimmings brought with them a lot of funerals and really, really sad families. Maybe it's because family and loved ones are in a seemingly closer proximity and the opportunity to say goodbye is greater. I don't know. I do know I've said goodbye to a lot of people this time of the year. Why I would be surprised to see it on the other side, the treating side of cancer, again, I don't know.
I was talking with a co-worker yesterday about how difficult the last few weeks have been in our clinic. I told her that I know full and well how sick these patients are but for some reason, the simple fact that they show up every single week instills in me a symbol of hope. If they keep showing up they must be getting better, right? I'm certainly smart enough to know this isn't the case for a number of our patients. I know the doctor I work for is going to try everything she can for as long as she can and for as long as the patient is willing. In hospice team meetings I would get so frustrated when the young woman with young children would finally accept our care only to die two days later. I would think, "Where's the quality of life?! We could have helped her enjoy the last few months of her life with her family...instead she was spending 10 hours a week at the doctor's office and taking chemo, going home feeling horrible." I simply could not understand how patients - encouraged by their doctors - could fight such losing battles when there was an obvious alternative.
As much as I want quality of life measures to truly mean something in our fix-it-all world, I've come to realize that more often than not doctors are motivated by their patients. Specifically in breast cancer, new drugs aimed at fighting the disease come out weekly, sometimes twice a week. If there's a candidate in the clinic why wouldn't we offer these drugs? Many of our patients are current on the latest literature and ask whether or not they could benefit from a new trial. Why wouldn't they if it meant a possible longevity in life or a cure?
The difference in my life as a hospice worker and now is the patient. When I worked in hospice, more often than not, I met the patient through the family. So often the patient was already lost to the disease process and coherent conversations were a rare commodity. My job was to help the patient by helping the family. I knew this deep down, but a selfish part of me really wanted to connect with the person dying. Occasionally I was granted this opportunity and it only left me wanting more connections.
My job now has granted me this wish. I work intimately with our patients...most of whom are between the ages of 20 and 60 years old and all of whom have metastatic disease. Some of these ladies have been fighting their cancer for decades and some are just getting started. I see them, at first, weekly, then every other week, then in three weeks and well, the gap grows as they get better. The hardest part is when I haven't seen them for a few weeks and suddenly their visits become quicker in succession. 'Andy' was in every week for the last 6 weeks and then she died. She was only 41 and had been fighting her cancer for nearly 15 years. She had hospice care for three days. 'Sherry' was in twice a week, once for chemo and once to see the doc, for the last 5 weeks. Tuesday evening she became very disoriented and was rushed to the ER where she died. I had all of her paperwork and charts ready for her appointment on Wednesday. She fought her cancer for 20 years.
Both of these ladies knew my name. I was fond of their remarkable husbands who were at their side for every visit and treatment. I asked about their kids and grandkids. We talked about how bad they felt on some days and how much energy they had on others. I checked on them while upstairs in treatment when I had a moment to break away. They asked me how school was going and gave me hugs when they found out I was pregnant. I called their homes and spoke with the other caregivers in their life. I contributed to that sense of hope....that their struggle to fight their cancer every single day was worth the effort and the many trips to the cancer center, the scans and drugs, it was all purposeful. It was always, "Hello!" and, "See you in a couple of days."
I never had the opportunity to say, "I will miss having you smile at me on Wednesday mornings, despite knowing how miserable you are to be here." I never had the opportunity to say, "If I don't get the chance to see you next week, please know you will be missed." I didn't get the chance to say, "Goodbye." Or, maybe I didn't take it. All the signs were there and I couldn't ignore what the doctor was saying, what the scans revealed, what the lab reports reported. I knew death was imminent and I know these amazing women knew this too, and yet I couldn't bring myself to accept the inevitable. After all, they kept showing up every week and I kept believing that maybe we could make a difference. And maybe we did, but right now the only difference I see is in myself.
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