REALITY
So.... Cancer still sucks. For almost 10 days I lived in a delightful place of dreams where that small shred of hope that somehow my mom's cancer would be treatable was a reality. It was a beautiful place. There were hopes for next Thanksgiving, or even Christmas and my birthday was easily something we could share one more time.
That is not a very realistic dream it turns out. The other night I spoke with my mom's oncologist. We talked about some of the details of the chemo that my mom is going to begin on December 1st and we have known each other a very long time so it was not an awkward conversation. Towards the end I mentioned that I was planning on getting married in April and we were thinking of moving it up to January so that my mom could be at her strongest and be able to be a part of our celebration. My thought was that the chemo would still be in the early stages and that whatever side effects would not yet have fully developed.
Here is the really shitty sentence - "Well Kathy, I think that it is a very good idea because of her prognosis, not because of side effects".
That one keeps repeating in my head over and over and over again. The amount of crying that I am doing whilst sitting here and typing this is staggering. For those of you that are close to me you know that I am not one for wallowing in self pity or being the victim. I inherited that trait from my mom. She does not want anyone to feel pity for her. She also does not particularly want to deal with their needs around this either.
I spoke with her earlier today. She mentioned that she spoke to a friend of hers today and that she thought I might not be telling her everything there is to know about her disease. Then she told her friend "Of course, I don't actually want to know everything there is to know so in case you do know something that I don't please don't tell me."
We then chatted about what she thought I might or might not know and the only thing she thought it could be is how long she has to live. The truth is, I have no real idea about how long she has.
I know that her prognosis is better due to the fact that she is able to cook and clean for herself and able to do her own shopping. Those are important factors. I know that she has beat the odds for living with cancer twice before so that has to be good for at least a couple of months right there maybe. Her choice to not stay in bed every day waiting for the end is also a great sign.
This does not however buy her years. Years that would see her first grandchild. Her first spit-up from that grandchild. Her first poo filled diaper that needs to be changed. Fun things to look forward to indeed.
Some may think that I should have hope that she will live a long life and see those things. To those folks I respond thusly:
My hope remains what it always has. It is the hope the my mother's last days amongst us are pain free, genuine, warm, loving and compassionate. When my mother was diagnosed with Stage 3 breast cancer over 20 years ago the prognosis was not great. At that time my mom and sat down and spoke from our hearts about what really mattered to her. She has made me promise that I would not allow her to suffer and spend her days in a nursing home hoping someone might see her that day.
When her sister passed away almost 3 years ago, she pulled me out of the room, clutching my arm and made me swear I would never allow her to suffer as her sister had. In a hospital for weeks with only her brother, sister-in-law and sister visiting every week, her husband rarely visiting her and her son nowhere to be found. She coded multiple times and my mom's heart broke each time. Her sister was unrecognizable in the hospital and unresponsive in the week prior to her death.
That image haunts both of us. She reminds me of it every time she asks me if I will honor her wishes when the time comes. I always respond "absolutely" to this request. What she does not know is how incredibly difficult that will be if we get to that place. My wishes and desires do not matter when it comes to this. Only hers truly matter.
Later in our conversation today she told me that she thinks she does not have a long time and is hoping it is more than 3 months. In my heart I feel as though she has at least 3 good months ahead of her depending on the chemo.
She was/is reluctant to even do the chemo. Mom has had so many friends do chemo late in life and all of them declined shortly after it and never even came close to the baseline of what life was like before chemo. She refuses to be stuck in a bed and sick all day. A good family friend is an oncologist at another teaching hospital and his rule of thumb has to do with how much time she has to stay in bed because of the chemo. If it is more than half a day in bed, and the chemo is only palliative, it really is not worth it.
The chemo for my mom is palliative only. It is not curative in any sense. They are doing it so that she has longer time with less pain. The chemo will not make the cancer go away, it will merely keep it at bay.
I was feeling very guilty as Ronni and I discussed moving the wedding to January. It seemed so selfish and reactionary to me. My mom feels incredibly guilty though I continue to assure her that it works out quite well for us. In many ways is does. The venue change means less for me to arrange. It means that the dress Ronni will wear is the most beautiful thing I have ever seen her in. It means that those few who will join us will be a part of something quite intimate and full of joy. It means that we will have a beautiful cake from my favorite bakery (Bittersweet for those who care).
It means that my mom's only wish for me will come true in front of her very eyes. All she has ever wanted for me is that I could find someone to share my life with me that loves me as much as she does. She wants to know that I will always have someone by my side who will be my greatest advocate and love me unconditionally. As I spoke with my mom yesterday she told me who reassuring it was to her that Ronni and I worked so well together. We worked on her house over the weekend and she could not get over how seamless it was. She knows that Ronni is the perfect woman to love me and keep me in check as well.
I hope that someday we will have a big party with all of the people that we love in the same room. Lots of dancing (yes, Ronni, dancing in a circle as well) and music and laughter to fill the whole place with joy. For now, we will embrace the small gathering we will have so that my mom's dream (and ours as well) of seeing us begin our journey with the blessing of family and friends is fulfilled.
To all of you that are reading this, thank you for taking the time to know more (maybe more than you wanted to know) about what is going on in my heart as well as what is going on for my mom. Many of you have sent emails or left messages on my voice mail expressing your thoughts and prayers. For that I thank you. As you can imagine, I get so many calls and emails that it is not only hard to keep up with them, sometimes it is just too much to read them all at once. If I fail to respond, please forgive me and know that I thank you in advance from the deepest part of my soul.
Cancer still sucks but we will get through this with love, compassion, dignity and warmth.
That is not a very realistic dream it turns out. The other night I spoke with my mom's oncologist. We talked about some of the details of the chemo that my mom is going to begin on December 1st and we have known each other a very long time so it was not an awkward conversation. Towards the end I mentioned that I was planning on getting married in April and we were thinking of moving it up to January so that my mom could be at her strongest and be able to be a part of our celebration. My thought was that the chemo would still be in the early stages and that whatever side effects would not yet have fully developed.
Here is the really shitty sentence - "Well Kathy, I think that it is a very good idea because of her prognosis, not because of side effects".
That one keeps repeating in my head over and over and over again. The amount of crying that I am doing whilst sitting here and typing this is staggering. For those of you that are close to me you know that I am not one for wallowing in self pity or being the victim. I inherited that trait from my mom. She does not want anyone to feel pity for her. She also does not particularly want to deal with their needs around this either.
I spoke with her earlier today. She mentioned that she spoke to a friend of hers today and that she thought I might not be telling her everything there is to know about her disease. Then she told her friend "Of course, I don't actually want to know everything there is to know so in case you do know something that I don't please don't tell me."
We then chatted about what she thought I might or might not know and the only thing she thought it could be is how long she has to live. The truth is, I have no real idea about how long she has.
I know that her prognosis is better due to the fact that she is able to cook and clean for herself and able to do her own shopping. Those are important factors. I know that she has beat the odds for living with cancer twice before so that has to be good for at least a couple of months right there maybe. Her choice to not stay in bed every day waiting for the end is also a great sign.
This does not however buy her years. Years that would see her first grandchild. Her first spit-up from that grandchild. Her first poo filled diaper that needs to be changed. Fun things to look forward to indeed.
Some may think that I should have hope that she will live a long life and see those things. To those folks I respond thusly:
My hope remains what it always has. It is the hope the my mother's last days amongst us are pain free, genuine, warm, loving and compassionate. When my mother was diagnosed with Stage 3 breast cancer over 20 years ago the prognosis was not great. At that time my mom and sat down and spoke from our hearts about what really mattered to her. She has made me promise that I would not allow her to suffer and spend her days in a nursing home hoping someone might see her that day.
When her sister passed away almost 3 years ago, she pulled me out of the room, clutching my arm and made me swear I would never allow her to suffer as her sister had. In a hospital for weeks with only her brother, sister-in-law and sister visiting every week, her husband rarely visiting her and her son nowhere to be found. She coded multiple times and my mom's heart broke each time. Her sister was unrecognizable in the hospital and unresponsive in the week prior to her death.
That image haunts both of us. She reminds me of it every time she asks me if I will honor her wishes when the time comes. I always respond "absolutely" to this request. What she does not know is how incredibly difficult that will be if we get to that place. My wishes and desires do not matter when it comes to this. Only hers truly matter.
Later in our conversation today she told me that she thinks she does not have a long time and is hoping it is more than 3 months. In my heart I feel as though she has at least 3 good months ahead of her depending on the chemo.
She was/is reluctant to even do the chemo. Mom has had so many friends do chemo late in life and all of them declined shortly after it and never even came close to the baseline of what life was like before chemo. She refuses to be stuck in a bed and sick all day. A good family friend is an oncologist at another teaching hospital and his rule of thumb has to do with how much time she has to stay in bed because of the chemo. If it is more than half a day in bed, and the chemo is only palliative, it really is not worth it.
The chemo for my mom is palliative only. It is not curative in any sense. They are doing it so that she has longer time with less pain. The chemo will not make the cancer go away, it will merely keep it at bay.
I was feeling very guilty as Ronni and I discussed moving the wedding to January. It seemed so selfish and reactionary to me. My mom feels incredibly guilty though I continue to assure her that it works out quite well for us. In many ways is does. The venue change means less for me to arrange. It means that the dress Ronni will wear is the most beautiful thing I have ever seen her in. It means that those few who will join us will be a part of something quite intimate and full of joy. It means that we will have a beautiful cake from my favorite bakery (Bittersweet for those who care).
It means that my mom's only wish for me will come true in front of her very eyes. All she has ever wanted for me is that I could find someone to share my life with me that loves me as much as she does. She wants to know that I will always have someone by my side who will be my greatest advocate and love me unconditionally. As I spoke with my mom yesterday she told me who reassuring it was to her that Ronni and I worked so well together. We worked on her house over the weekend and she could not get over how seamless it was. She knows that Ronni is the perfect woman to love me and keep me in check as well.
I hope that someday we will have a big party with all of the people that we love in the same room. Lots of dancing (yes, Ronni, dancing in a circle as well) and music and laughter to fill the whole place with joy. For now, we will embrace the small gathering we will have so that my mom's dream (and ours as well) of seeing us begin our journey with the blessing of family and friends is fulfilled.
To all of you that are reading this, thank you for taking the time to know more (maybe more than you wanted to know) about what is going on in my heart as well as what is going on for my mom. Many of you have sent emails or left messages on my voice mail expressing your thoughts and prayers. For that I thank you. As you can imagine, I get so many calls and emails that it is not only hard to keep up with them, sometimes it is just too much to read them all at once. If I fail to respond, please forgive me and know that I thank you in advance from the deepest part of my soul.
Cancer still sucks but we will get through this with love, compassion, dignity and warmth.
posted by Unknown at 2:34 PM
1 Comments:
Doctor,
I was just perusing the blogs I have saved in my blog file, and decided to click on this, to see if you'd posted anything recently. I can remember reading it when you first posted it, and hoping you had enough time with your mom to feel sufficient resolution. That was well over a year ago, and you are still taking care of her at home.
I have another friend whose blog I read regularly- she's also taking care of her mom, who had a stroke a couple of years back, and she goes on and on about how exhausting it is. And I know from the years spent working in an Alzheimer's assisted living facility that she's not complaining for nothing. My point here is: Doctor, I am very proud to know you.
I have no idea if you get notifications about this blog of yours, but I wanted to post this here because without being placed near the thing that incited it, it probably wouldn't make a whole lot of sense.
Sincerely,
Doctor Palmer
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