Taking down Christmas
It was hard. It was hard last year, too.
Last year, I was one month into my diagnosis that I had cancer again for the third time. I found out that I had Metastatic breast cancer to my sternum and spine in November of 2017. A week before Thanksgiving. As is my habit, I had done extensive research on the internet and asked my oncologist to give me a ballpark figure of about how much time I had left. She said that it varies from person to person, but that a woman my age, with my current infirmities (diabetes, rheumatoid arthritis, pre-lupus, Meniere's syndrome and a compromised immune system) who had beat breast cancer with chemo and radiation in 2015 and leukemia four months prior?
Roughly 11 months. But, as I said, it varies. Obviously, you are a fighter. That is a given. It wouldn't surprise me if you survived at least two years. Or more.
I remember sitting in my car after that appointment and thinking of my worst case scenario. October of 2019. Well, at least I would see Autumn or some of it. I mentally prepared myself. This sounds easier than it was. I cried almost all of the time when I was alone. I lay awake nights worrying about everything and anything. And I had the holidays to get through. It was tough because I was pretending to everyone else that sure...I was going to be okay. Having terminal cancer was not fun, but I didn't want to go around acting like a bawl baby.
When we took the Christmas ornaments down last year, I could barely speak. I was devastated. Kept thinking, this is it. Look at that tree top angel for the last time. The mistletoe. The wrought iron nativity from Pat E. The last time that those lights will be twinkling in the corner on the tree that we bought when we were so broke....
And then 2019 came. And went. It was a pretty awful year. I went through almost all my treatment options and the only one that worked was the first one. Ibrance. And it only worked for four months. Then, came the dark times. The treatments, one following the other. All with truly terrible side effects. Diarrhea. Constipation. Bone pain that literally knocked me off of my feet. Ugly rashes. Mouth sores. At one point, I counted 14 mouth sores at one time. Weird shooting pain in my hands and feet that can only be described as icy hot stabbing. Puking. More puking. Swollen esophagus. Stomach aches that made me curl into the fetal position, rocking back and forth.
And still, nothing worked. My tumor markers kept climbing. 62. 64. 98. 104. 146. 200. 403. 645. 1104. 1223. 1498.
Some days weren't horrible. I could still drive myself to treatment. I wasn't sick all of the time, just enough to make it hard to be myself.
After Christmas last year, when the Ibrance was still working, we flew to California to visit my cousin and to see the Harry Potter exhibit at Universal Studios. The photos show me in a wheelchair because my legs weren't working well enough to walk the distance, but it wasn't too bad. I drank butterbeer. I went to a restaurant and ate a delicious bowl of soup.
But, as the months went by and no treatment worked, I began to think that October, 2019 was probably a good estimate. My stamina was becoming less and less. I went to bed around 7:30 at night and slept the next day until around 10. Then, a nap around 2:30 to 4:30. I could do small chores, but even grocery shopping was out of my reach. T began to do it on the weekends while I waited in the car.
I began to say my goodbyes to everything. The trees in the park. I couldn't walk in the park anymore, but T would walk with me to the bench and then go on her walk without me while I watched the pond. I said my goodbyes to that pond. Those summer croaking toads. Those birds. I could still talk to the trees in our yard and I did. Those trees know ALL of my secrets. Even the ones that T doesn't know.
And then, it was October. And I was still alive. It wasn't fun being alive, but I appreciated it. I was ready, though. I had everyone whom I loved in my life. Those others? They were long out and frankly, not sorely missed. It's funny how impending death clears the eyes. I realized who mattered and who....didn't. And why. There was no sturm und drang in my life, no long sob fests with loved ones. Just honesty. A lot of laughing. A sense of peace and contentment. A realization that a cycle of life was ending, but hey....this was normal and not unusual.
Thanksgiving came. Went. Still here. And something new. I had started a new drug in early November. Halaven. And while the side effects were nothing new, something changed.
My tumor markers began to go down. Dramatically. They went from 1498 to 625. Then 252. And last week they were 194.
We decorated for Christmas. Or...I should say, T decorated. I watched from my chair, calling out orders like
Don't forget the bead ornament.
That popsicle stick ornament that Lucy made in kindergarten.
The silly pine cone one with the googly eyes.
Twist that branch more to the left.
There are too many lights on the bottom.
The angel for the top.
We didn't celebrate much. Lucy was still in France. We went to T's sister's house after T interrogated everyone to make sure that no one had a cold, on the 28th. We didn't stay long, but I did stay up past my bedtime. We got home at 8:30, which made us laugh.
Wow, we are really being wild tonight......
We drove around and looked at all the Christmas lights.
There is nothing like Christmastime in the city. Nothing.
And now, it was time to take it all down. We had even decorated our fae tree outside this year. I would wake up in the night with leg cramps or nauseated and peek out our bedroom window to look out at the twinkling lights on the front lawn. It made something settle in me. Go soft. Calm.
It's all packed up now. I watched T take it all down. It took over two hours, but it is all packed up and stored once again in the basement. She said to me what she said last year: "Next year, you'll be here to see them again."
This year, like last year, I am doubtful. Halaven was my last course of treatment. When it began to work, no one was more stunned than I was. And there is always a part of me that refuses to hope, refuses to set myself up for disappointment. But, you never know.
Because I guess I am sort of a warrior. A fighter. There is that part of me that takes Dylan Thomas' advice.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
Last year, I was one month into my diagnosis that I had cancer again for the third time. I found out that I had Metastatic breast cancer to my sternum and spine in November of 2017. A week before Thanksgiving. As is my habit, I had done extensive research on the internet and asked my oncologist to give me a ballpark figure of about how much time I had left. She said that it varies from person to person, but that a woman my age, with my current infirmities (diabetes, rheumatoid arthritis, pre-lupus, Meniere's syndrome and a compromised immune system) who had beat breast cancer with chemo and radiation in 2015 and leukemia four months prior?
Roughly 11 months. But, as I said, it varies. Obviously, you are a fighter. That is a given. It wouldn't surprise me if you survived at least two years. Or more.
I remember sitting in my car after that appointment and thinking of my worst case scenario. October of 2019. Well, at least I would see Autumn or some of it. I mentally prepared myself. This sounds easier than it was. I cried almost all of the time when I was alone. I lay awake nights worrying about everything and anything. And I had the holidays to get through. It was tough because I was pretending to everyone else that sure...I was going to be okay. Having terminal cancer was not fun, but I didn't want to go around acting like a bawl baby.
When we took the Christmas ornaments down last year, I could barely speak. I was devastated. Kept thinking, this is it. Look at that tree top angel for the last time. The mistletoe. The wrought iron nativity from Pat E. The last time that those lights will be twinkling in the corner on the tree that we bought when we were so broke....
And then 2019 came. And went. It was a pretty awful year. I went through almost all my treatment options and the only one that worked was the first one. Ibrance. And it only worked for four months. Then, came the dark times. The treatments, one following the other. All with truly terrible side effects. Diarrhea. Constipation. Bone pain that literally knocked me off of my feet. Ugly rashes. Mouth sores. At one point, I counted 14 mouth sores at one time. Weird shooting pain in my hands and feet that can only be described as icy hot stabbing. Puking. More puking. Swollen esophagus. Stomach aches that made me curl into the fetal position, rocking back and forth.
And still, nothing worked. My tumor markers kept climbing. 62. 64. 98. 104. 146. 200. 403. 645. 1104. 1223. 1498.
Some days weren't horrible. I could still drive myself to treatment. I wasn't sick all of the time, just enough to make it hard to be myself.
After Christmas last year, when the Ibrance was still working, we flew to California to visit my cousin and to see the Harry Potter exhibit at Universal Studios. The photos show me in a wheelchair because my legs weren't working well enough to walk the distance, but it wasn't too bad. I drank butterbeer. I went to a restaurant and ate a delicious bowl of soup.
But, as the months went by and no treatment worked, I began to think that October, 2019 was probably a good estimate. My stamina was becoming less and less. I went to bed around 7:30 at night and slept the next day until around 10. Then, a nap around 2:30 to 4:30. I could do small chores, but even grocery shopping was out of my reach. T began to do it on the weekends while I waited in the car.
I began to say my goodbyes to everything. The trees in the park. I couldn't walk in the park anymore, but T would walk with me to the bench and then go on her walk without me while I watched the pond. I said my goodbyes to that pond. Those summer croaking toads. Those birds. I could still talk to the trees in our yard and I did. Those trees know ALL of my secrets. Even the ones that T doesn't know.
And then, it was October. And I was still alive. It wasn't fun being alive, but I appreciated it. I was ready, though. I had everyone whom I loved in my life. Those others? They were long out and frankly, not sorely missed. It's funny how impending death clears the eyes. I realized who mattered and who....didn't. And why. There was no sturm und drang in my life, no long sob fests with loved ones. Just honesty. A lot of laughing. A sense of peace and contentment. A realization that a cycle of life was ending, but hey....this was normal and not unusual.
Thanksgiving came. Went. Still here. And something new. I had started a new drug in early November. Halaven. And while the side effects were nothing new, something changed.
My tumor markers began to go down. Dramatically. They went from 1498 to 625. Then 252. And last week they were 194.
We decorated for Christmas. Or...I should say, T decorated. I watched from my chair, calling out orders like
Don't forget the bead ornament.
That popsicle stick ornament that Lucy made in kindergarten.
The silly pine cone one with the googly eyes.
Twist that branch more to the left.
There are too many lights on the bottom.
The angel for the top.
We didn't celebrate much. Lucy was still in France. We went to T's sister's house after T interrogated everyone to make sure that no one had a cold, on the 28th. We didn't stay long, but I did stay up past my bedtime. We got home at 8:30, which made us laugh.
Wow, we are really being wild tonight......
We drove around and looked at all the Christmas lights.
There is nothing like Christmastime in the city. Nothing.
And now, it was time to take it all down. We had even decorated our fae tree outside this year. I would wake up in the night with leg cramps or nauseated and peek out our bedroom window to look out at the twinkling lights on the front lawn. It made something settle in me. Go soft. Calm.
It's all packed up now. I watched T take it all down. It took over two hours, but it is all packed up and stored once again in the basement. She said to me what she said last year: "Next year, you'll be here to see them again."
This year, like last year, I am doubtful. Halaven was my last course of treatment. When it began to work, no one was more stunned than I was. And there is always a part of me that refuses to hope, refuses to set myself up for disappointment. But, you never know.
Because I guess I am sort of a warrior. A fighter. There is that part of me that takes Dylan Thomas' advice.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
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