Weary
First of all, if you're tuning in for a post on WWP, I apologize. The only thing this post will have to do with writing is the fact that I'm turning to writing yet again to bare my soul and work through many mixed emotions. This is a decidedly personal post but one that warrants sharing. We all go through struggles in life and being honest about them is the best way to show that we are all in this beautiful mess together. No one's life is perfect though we may fool ourselves into believing it is so. No one's children are perfect. No one's marriage is perfect. No one gets through this life without challenge and struggle. Few get through without being touched by cancer.
Cancer. I hate very few things in life. I reserve the word "hate" and use it sparingly. I hate cancer. It's been our unwanted house guest for more than ten years now. Nothing can get me angrier. Nothing can get me to cry faster. Ten years. Ten years of scans, scopes, tests, surgeries, chemotherapy, side effects, appointments. The only cancer experience my husband had escaped was radiation. But, that was not to be. No, we're going to get the full cancer experience.
I spent nearly four hours at a radiation oncology center with Brett yesterday. We had already accepted that the lip cancer that showed up as a tiny pimple had invaded deep tissue and had invaded nerves. I cope by learning- constantly seeking any knowledge I can find as if knowing all the details will somehow build a shield around my heart. I had read all I could get my hands on about PNI (perineural invasion) and squamous cell carcinomas and all the high risk factors. I learned that Brett had four of the high risk factors including a rare win in the genetic lottery. I read about the protocol and I already knew we were looking at ongoing daily radiation treatments. Nothing should have been a surprise. It all felt like new and overwhelming information. It all felt a bit unreal.
We started with the consults. A very friendly physician's assistant began. This is a good cancer. I wanted to scream that there is no such thing but I understood what he was trying to say. It's good because they can find some form of torture for weeks to eradicate it and keep it at bay. No cancer is good. They know that, too. They see it every single day in all ages and all varieties of people.
Then, the doctor arrived He reviewed pathology reports and relived ten years of cancer history. He talked about treatment options. There is only one. Six weeks of daily radiation treatments 160 miles round trip from our house. More than two hours in a car for daily 15-20 minutes appointments. My loving mechanic husband did mental math and decided that was only one oil change. Man, I love him.
Then came the details- He'll be fine the first ten treatments and then fatigue will settle in. Because they have to go in a 2cm radius he will have a very sore lip and cheek inside and out and will finish out chewing on one side and struggling a bit. The mustache that he's only lost once since the age of 15 will be burned off on the side and "might" grow back. His treatment is unique (everything about this man I love so deeply is unique when it comes to cancer). He needed a block handmade from wax as a model and then constructed of lead. This will sit in his cheek and protect his gums and teeth from the electron invasion of his soft tissue.
Next, the radiology FNP who enjoyed my jokes about facial claw tattoos and thoughtfully answered my questions as best as she could, arrived. She summoned a tech who took big sheets of pink wax and a highly technical pair of sanitized Fiskars and began to shape a mold, having Brett pull it in and out of his mouth. I have made many models molded from Gouda cheese wax on New Year's Eve and it was much the same process but I informed the tech that my wax sculpting was far more creative. The tech summoned another doctor who came in to consult on the shape of the mold. They stared at Brett. They wrote on his face with sharpie. They made jokes about staring at him. They again explained side effects and the treatment. They again cautioned us not to worry but explained that this is absolutely necessary as the nerves in that area track back to the brain stem.
Finally, it was time for the scan to check for radiation depth and to precisely locate the area where they will aim the radiation. I was not allowed to serve as an audience for this part. I got the story after of how the mask is shaped over your face and clicked in so you can't move at all and then a huge plastic thing is shoved in your mouth and then scans make noises all around looking for any obvious tumors in the area.
Brett is ready for a trial run on July 5th. The driving and treatment craziness will ensue July 10th. That's our summer. Gone is our trip we hoped of and dreamed of that one week in August that we both desperately needed. The realization of this brought my husband near tears- the guilt he carries for the time and money cancer has robbed us of is misplaced but overwhelms him at times. He never asked for this journey yet I can't think of anyone better to take it. He's so amazing. He faces it without fear and understands that he's not special. Every time we leave the Cancer Center we are reminded that there is nothing special about us at all. Cancer comes in all shapes and sizes and doesn't care how old you are or how much money you make.
This won't be any different than our many other journeys. In fact, Brett was quite a celebrity yesterday as his case was reviewed. The doctors and nurses had never sat across a table from a stage IV cancer survivor with mets to the liver. He is a miracle in so many ways and I'm bitter about ten years but also thankful because we've lived every day those ten years. We've made so many memories and crazy decisions and it's been such a blessing. This will be no different. I see the end and it's going to be fine. It's the in between that leaves me weary this morning. I know the in between all too well.
So, I turn again to prayer. I turn again to friends and family for strength. I turn again to the written word to simply get the thoughts and feelings out. I turn again to faith that runs deeper with each step. I turn again to love and to remembering to live in the moment. I look back at how many times we've been carried and I know we will be carried again. This, too, shall pass. I believe this with all of my heart. But, today, I just seek rest and scan the internet for a way to get Brett to an ocean for a long walk before this all begins again. The ocean feeds his soul and he's going to need the nourishment.
Cancer. I hate very few things in life. I reserve the word "hate" and use it sparingly. I hate cancer. It's been our unwanted house guest for more than ten years now. Nothing can get me angrier. Nothing can get me to cry faster. Ten years. Ten years of scans, scopes, tests, surgeries, chemotherapy, side effects, appointments. The only cancer experience my husband had escaped was radiation. But, that was not to be. No, we're going to get the full cancer experience.
I spent nearly four hours at a radiation oncology center with Brett yesterday. We had already accepted that the lip cancer that showed up as a tiny pimple had invaded deep tissue and had invaded nerves. I cope by learning- constantly seeking any knowledge I can find as if knowing all the details will somehow build a shield around my heart. I had read all I could get my hands on about PNI (perineural invasion) and squamous cell carcinomas and all the high risk factors. I learned that Brett had four of the high risk factors including a rare win in the genetic lottery. I read about the protocol and I already knew we were looking at ongoing daily radiation treatments. Nothing should have been a surprise. It all felt like new and overwhelming information. It all felt a bit unreal.
We started with the consults. A very friendly physician's assistant began. This is a good cancer. I wanted to scream that there is no such thing but I understood what he was trying to say. It's good because they can find some form of torture for weeks to eradicate it and keep it at bay. No cancer is good. They know that, too. They see it every single day in all ages and all varieties of people.
Then, the doctor arrived He reviewed pathology reports and relived ten years of cancer history. He talked about treatment options. There is only one. Six weeks of daily radiation treatments 160 miles round trip from our house. More than two hours in a car for daily 15-20 minutes appointments. My loving mechanic husband did mental math and decided that was only one oil change. Man, I love him.
Then came the details- He'll be fine the first ten treatments and then fatigue will settle in. Because they have to go in a 2cm radius he will have a very sore lip and cheek inside and out and will finish out chewing on one side and struggling a bit. The mustache that he's only lost once since the age of 15 will be burned off on the side and "might" grow back. His treatment is unique (everything about this man I love so deeply is unique when it comes to cancer). He needed a block handmade from wax as a model and then constructed of lead. This will sit in his cheek and protect his gums and teeth from the electron invasion of his soft tissue.
Next, the radiology FNP who enjoyed my jokes about facial claw tattoos and thoughtfully answered my questions as best as she could, arrived. She summoned a tech who took big sheets of pink wax and a highly technical pair of sanitized Fiskars and began to shape a mold, having Brett pull it in and out of his mouth. I have made many models molded from Gouda cheese wax on New Year's Eve and it was much the same process but I informed the tech that my wax sculpting was far more creative. The tech summoned another doctor who came in to consult on the shape of the mold. They stared at Brett. They wrote on his face with sharpie. They made jokes about staring at him. They again explained side effects and the treatment. They again cautioned us not to worry but explained that this is absolutely necessary as the nerves in that area track back to the brain stem.
Finally, it was time for the scan to check for radiation depth and to precisely locate the area where they will aim the radiation. I was not allowed to serve as an audience for this part. I got the story after of how the mask is shaped over your face and clicked in so you can't move at all and then a huge plastic thing is shoved in your mouth and then scans make noises all around looking for any obvious tumors in the area.
Brett is ready for a trial run on July 5th. The driving and treatment craziness will ensue July 10th. That's our summer. Gone is our trip we hoped of and dreamed of that one week in August that we both desperately needed. The realization of this brought my husband near tears- the guilt he carries for the time and money cancer has robbed us of is misplaced but overwhelms him at times. He never asked for this journey yet I can't think of anyone better to take it. He's so amazing. He faces it without fear and understands that he's not special. Every time we leave the Cancer Center we are reminded that there is nothing special about us at all. Cancer comes in all shapes and sizes and doesn't care how old you are or how much money you make.
This won't be any different than our many other journeys. In fact, Brett was quite a celebrity yesterday as his case was reviewed. The doctors and nurses had never sat across a table from a stage IV cancer survivor with mets to the liver. He is a miracle in so many ways and I'm bitter about ten years but also thankful because we've lived every day those ten years. We've made so many memories and crazy decisions and it's been such a blessing. This will be no different. I see the end and it's going to be fine. It's the in between that leaves me weary this morning. I know the in between all too well.
So, I turn again to prayer. I turn again to friends and family for strength. I turn again to the written word to simply get the thoughts and feelings out. I turn again to faith that runs deeper with each step. I turn again to love and to remembering to live in the moment. I look back at how many times we've been carried and I know we will be carried again. This, too, shall pass. I believe this with all of my heart. But, today, I just seek rest and scan the internet for a way to get Brett to an ocean for a long walk before this all begins again. The ocean feeds his soul and he's going to need the nourishment.
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