Not My Time to Say Goodbye

Started by anonymous, March 23, 2015
9 replies for this topic
anonymous

N/A
N/A
Posted on
March 23, 2015
Everyone around me seems to be dying. There isn't a week that goes by I don't hear about yet another person with metastatic cancer. Whether it's the woman in my church so afraid of dying of the colon cancer that had taken her parents that she never got checked, guaranteeing her colon cancer would not be caught and she would die the same horrible death, or the friend's husband who suffered a minor heart attack, the ordered X-ray of his chest showing a mass in his lung, and the MRI exposing the extensive metastatic cancer in his brain. Death is rampant.

I thought this phase of my life would not start until I was 70. I remember my mother talking about all the people around her who were dying. It seemed she was at a funeral every week, she and her remaining friends left to serve lunch to the mourners streaming from the funeral service. I felt so sorry for my mother living in a world where she was increasingly being left behind. I could not imagine what that was like.

But now at age 50, I am living in that same world. It began when I was 42, with my mother's sudden death, followed by a friend’s suicide, then my sister's tragic death, and finally my best friend's death from uterine cancer. A year later I was diagnosed with metastatic breast cancer. After that, cancer seemed to be drawn to me. Or maybe it wasn't that cancer was drawn to me, but that others felt more comfortable sharing their cancer experiences with me because I had become a cancer patient extraordinaire.

Another friend, someone who is like a father to me, is now fighting stage 4 throat cancer that has spread to his lungs. Shortly after his diagnosis, he threw a going away party for himself. He insisted I fly home to Wisconsin to attend. I couldn't do it. I was not ready to say goodbye.  He then bonded with me over our diagnosis. Because we both have stage 4 cancer, he felt we had death in common. He talked about us dying together, remarked that I should fly home so that we could die holding hands. I certainly couldn't listen to that. I was not ready to die.

The way I deal with cancer is to research the disease, discovering available treatments and treatments soon to come. My hope, my goal is to stay ahead of the cancer with therapies soon to be found. With HER2-positive breast cancer this is an entirely realistic goal since the overabundance of HER2 protein on the cancer cells provides a target for the cancer meds. I hope to gain many years this way, years I shouldn't really have had, my original diagnosis showing a liver covered with lesions. I applied the same strategy to my friend's cancer. I researched current treatments, sought developing treatments.  My friend's cancer is HPV-based, a cancer subtype with some incredible options in the works. I found a clinical trial near me in Maryland, immunotherapy that was proving very successful against HPV-based cancers, with few side effects. The experimental treatment would only require two weeks of my friend's time, and I impressed upon him that I would happily let him stay with me for as long as he needed. He rejected this option and instead chose a clinical trial close to his home, one that had a less promising immunotherapy and a very toxic chemo mix. After enduring a chemo that almost killed him, the scan afterwards showed less reduction in the cancer than expected.

Last night my friend posted a note on his social network saying that fluid had begun to build in the lining around his lungs. Not a good sign. It appeared he was moving closer to dying.  My reaction was fear, sadness and anger. I was angry that he was choosing, what seemed to me, less effective options to treat his cancer simply because they were close to home.  I was sad and scared that he appeared to be focusing on the end of his life, saying goodbye and checking items off a bucket list. But he is choosing a different approach from what I would have, and I am facing the fact that he may soon die. I am not ready for this lovely man to die.

And I am having a hard time separating myself from my friend’s path. If he has chosen to say a long goodbye, should I be saying goodbye to my loved ones as well since I also have stage 4 cancer?  I am having a hard time separating my choices from his, my path from his, my living from his dying.  My friend’s decisions are not my decisions. I refuse to imagine myself holding my wonderful friend's hand in a pact to die at the same time.  I am very angry and hurt that this important-to-me man made this request of me when he was first diagnosed.  This has certainly made it harder for me in my own cancer journey. Dying together was his vision. Not mine. It was unfair of him to ask me to join him in death.  I do not want to host a party to say goodbye. I do not want to check items off my bucket list in a hurried attempt to complete my life. I want to live while I am still alive.

I want to continue to search for the latest, less toxic targeted treatments. I want to push my doctors. I want to demand the best in care. I want to do what I need to stay alive, in spite of my dear friend’s request, his desire to bond in a march toward death. For my own sake, I desperately need to turn my head away from this idea of saying goodbye.

So I will focus on life, no matter what my friend chooses.  His choices are his. His request to die together is not mine, and does not respect the path I am choosing. I need to hold babies, kiss my boyfriend, love my friends and family, surround myself with flowers, throw dinner parties, play with my dogs, dig in my garden, watch things grow. I need to wrap myself in living. Lots and lots of living. I am so sad about my friend. I hope and pray he finds a treatment that will allow him to live, just like I hope for similar treatments for me. But I cannot follow him down the path of goodbye. I need to let him and his decisions go. I love you dearly, my friend.  I respect your decision, but I still feel very sad. I so want you to live.  I cannot choose for you. I wish I could.  But I will have to respect your choices.  For me, though, I will continue this business of living. I pray peace for you in your journey. I love you. And I will miss you.  But I cannot join you in your death. 
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Anonymous

Member
0 Replies
Posted on
March 23, 2015
Everyone around me seems to be dying. There isn't a week that goes by I don't hear about yet another person with metastatic cancer. Whether it's the woman in my church so afraid of dying of the colon cancer that had taken her parents that she never got checked, guaranteeing her colon cancer would not be caught and she would die the same horrible death, or the friend's husband who suffered a minor heart attack, the ordered X-ray of his chest showing a mass in his lung, and the MRI exposing the extensive metastatic cancer in his brain. Death is rampant.

I thought this phase of my life would not start until I was 70. I remember my mother talking about all the people around her who were dying. It seemed she was at a funeral every week, she and her remaining friends left to serve lunch to the mourners streaming from the funeral service. I felt so sorry for my mother living in a world where she was increasingly being left behind. I could not imagine what that was like.

But now at age 50, I am living in that same world. It began when I was 42, with my mother's sudden death, followed by a friend’s suicide, then my sister's tragic death, and finally my best friend's death from uterine cancer. A year later I was diagnosed with metastatic breast cancer. After that, cancer seemed to be drawn to me. Or maybe it wasn't that cancer was drawn to me, but that others felt more comfortable sharing their cancer experiences with me because I had become a cancer patient extraordinaire.

Another friend, someone who is like a father to me, is now fighting stage 4 throat cancer that has spread to his lungs. Shortly after his diagnosis, he threw a going away party for himself. He insisted I fly home to Wisconsin to attend. I couldn't do it. I was not ready to say goodbye.  He then bonded with me over our diagnosis. Because we both have stage 4 cancer, he felt we had death in common. He talked about us dying together, remarked that I should fly home so that we could die holding hands. I certainly couldn't listen to that. I was not ready to die.

The way I deal with cancer is to research the disease, discovering available treatments and treatments soon to come. My hope, my goal is to stay ahead of the cancer with therapies soon to be found. With HER2-positive breast cancer this is an entirely realistic goal since the overabundance of HER2 protein on the cancer cells provides a target for the cancer meds. I hope to gain many years this way, years I shouldn't really have had, my original diagnosis showing a liver covered with lesions. I applied the same strategy to my friend's cancer. I researched current treatments, sought developing treatments.  My friend's cancer is HPV-based, a cancer subtype with some incredible options in the works. I found a clinical trial near me in Maryland, immunotherapy that was proving very successful against HPV-based cancers, with few side effects. The experimental treatment would only require two weeks of my friend's time, and I impressed upon him that I would happily let him stay with me for as long as he needed. He rejected this option and instead chose a clinical trial close to his home, one that had a less promising immunotherapy and a very toxic chemo mix. After enduring a chemo that almost killed him, the scan afterwards showed less reduction in the cancer than expected.

Last night my friend posted a note on his social network saying that fluid had begun to build in the lining around his lungs. Not a good sign. It appeared he was moving closer to dying.  My reaction was fear, sadness and anger. I was angry that he was choosing, what seemed to me, less effective options to treat his cancer simply because they were close to home.  I was sad and scared that he appeared to be focusing on the end of his life, saying goodbye and checking items off a bucket list. But he is choosing a different approach from what I would have, and I am facing the fact that he may soon die. I am not ready for this lovely man to die.

And I am having a hard time separating myself from my friend’s path. If he has chosen to say a long goodbye, should I be saying goodbye to my loved ones as well since I also have stage 4 cancer?  I am having a hard time separating my choices from his, my path from his, my living from his dying.  My friend’s decisions are not my decisions. I refuse to imagine myself holding my wonderful friend's hand in a pact to die at the same time.  I am very angry and hurt that this important-to-me man made this request of me when he was first diagnosed.  This has certainly made it harder for me in my own cancer journey. Dying together was his vision. Not mine. It was unfair of him to ask me to join him in death.  I do not want to host a party to say goodbye. I do not want to check items off my bucket list in a hurried attempt to complete my life. I want to live while I am still alive.

I want to continue to search for the latest, less toxic targeted treatments. I want to push my doctors. I want to demand the best in care. I want to do what I need to stay alive, in spite of my dear friend’s request, his desire to bond in a march toward death. For my own sake, I desperately need to turn my head away from this idea of saying goodbye.

So I will focus on life, no matter what my friend chooses.  His choices are his. His request to die together is not mine, and does not respect the path I am choosing. I need to hold babies, kiss my boyfriend, love my friends and family, surround myself with flowers, throw dinner parties, play with my dogs, dig in my garden, watch things grow. I need to wrap myself in living. Lots and lots of living. I am so sad about my friend. I hope and pray he finds a treatment that will allow him to live, just like I hope for similar treatments for me. But I cannot follow him down the path of goodbye. I need to let him and his decisions go. I love you dearly, my friend.  I respect your decision, but I still feel very sad. I so want you to live.  I cannot choose for you. I wish I could.  But I will have to respect your choices.  For me, though, I will continue this business of living. I pray peace for you in your journey. I love you. And I will miss you.  But I cannot join you in your death. 
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Tori Tomalia

Member
0 Replies
Posted on
March 23, 2015
Beautiful post. I, too, never expected to know so many people who have died when I am still in my 30s. But sadly that comes with the territory of living with metastatic cancer. I wish you a long life and the best of luck on targeted treatments. That is what is keeping me alive now. I think we share philosophies on this cancer mess.
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laura

Member
0 Replies
Posted on
March 26, 2015
Your article is very inspiring to me. I also have mestasicized breast cancer on my low lumbar spine. I have been taking Arimidex for 5 years and in Fwbruary found out that the same tumor in breast is back again. I want supportive doctors and don't feel I'm getting that. I want a double mastectomy this time and the doctors say I shouldn't do this. I'm a fighter and have a lot to accomplish withy sons and grand daughters. I want to hear more about the clinicals available out there. I still work full time Laura Hickle
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Tracey

Member
0 Replies
Posted on
March 26, 2015
I really enjoy your articles and inspiring words Susan. I also have stage 4 disease; Uterine Cancer in remission. I first experienced the death of one of my closest friends to Breast Cancer in 2002. I was devastated and we had to come to terms with it in two short months. She ignored her early symptoms and the advanced disease took her quickly. Little did I know, ten years later I would also face life's biggest challenge. In the last three years since my diagnosis, I have lost 3 more friends to Cancer. I am thankful that I do have 3 that are still fighting, and I am feeling well enough to be here for them and help in any way that I can. I ask "Why am I still here?" I have felt the survivor guilt. The bonds that we develop with other Cancer patients are something only we can know. Every soul I have met along this journey has touched me in some remarkable way. I have loved them all. God is not finished with us yet. We have so much more to give . Know that you are helping others with your heartfelt thoughts and sharing your stories.
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Susan Fariss

Member
0 Replies
Posted on
March 26, 2015
Tori. May we both live for years and years. :-)
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Susan Fariss

Member
0 Replies
Posted on
March 26, 2015
Laura. Look on www.clinicaltrials.gov and search for metastatic breast cancer. You look at a map or location listing of the clinical trials you find. I pushed my doctor for months on the mastectomy. Once I was stable, she signed off. It was a matter of my mental health and that is very important.
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Susan Fariss

Member
0 Replies
Posted on
March 26, 2015
Tracey, as the folks who support me tell me, someone else's story is not my story. Still, it's so hard to see folks dying. Sucks.
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deema22

Member
0 Replies
Posted on
May 27, 2015
Hello my dear how are you doing today I hope that everything is OK with you, My name is Miss Deema Abdel contact me at my private email address at (deemaabdel22@hotmail.com) So i can tell you more about me and also send my pictures directly to you, Thanks (deemaabdel22@hotmail.com)
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