It's hard to keep writing about the cancer experience. I guess I don't have to, it's my choice. However my life is pretty cancer consumed and its just inevitable. This is my processing room/blog. I imagine myself sitting on a therapist couch that is soft with fuzzy blankets that keep me comfortable in my fashionable pajamas. I think I shall wear a feather boa too. As my son would say, "let's get cozy". He likes to cuddle and watch a show or read a book. So here I am getting cozy and about unload/upload my situation out into the world/cyberspace for curious minds.
And she starts....My son is and as I will continue to say, my inspiration. I love being silly with him, reading stories to him, and play hide and seek. I just can't get enough sometimes. With my low energy we often find ourselves spooning on the couch while he watches a toy train videos and I sleep. I usually wake up to him gently stroking my cheek and looking into my eyes several times during the show. Just checking in with mama. I want every second to last extra long. I want to feel his soft hand resting on mine as we sleep together in the backseat of the car. I want to remember his genuine care and compassion he displayed by giving me a heating pad for my leg, a soft pillow, and handing me my cane and then telling me he is a "doctor for women". I want so badly to come out of my radiation appointment and answer my sons bold questions in an equally as loud voice. When he asks confidently in the full waiting room, are you all fixed now mama? Do you feel better? I want to yell, "yes I am". I want all the others in the waiting room who are witnessing my child's reality to stand up a give us a movie slow clap scene. Because in my movie everyone is healed and we grow old together, frolicking on the beach, watching great sunsets in Kauai.
Today I was enlightened by a new view. A big picture view of what life looks like. What does it look like? Day to day my life is challenging, I am living and "working" treatment. My schedule can change in a day due to my doctors. I can try to have more control but it usually doesn't work. I still ask questions but I am still flexing to their needs.
The bones of the story... My treatment continues. My general radiation and chemo were extended a week. Why? I am still trying to figure it out. I have 6 more radiation treatments to my chest. 2-3 stereotactic treatments to my chest tumor and 6-10 cyber knife treatments to my lady loins. So I don't really know when. All I know is that I may be done around April 6.
I also know that last week I had three little pieces of gold inserted into the belly of the beast- My vag cancer. My docs placed the leprechaun treasure with the intention that they can direct the cyber knife radiation directly to my cancer. It really hurt. I had my first fentanyl lollipop, it helped a little. It was a quick yet painful procedure. I had my nurse hold my hand but I yelled, "Mother Theresa" three times, for each injection. It hurt f$ing bad. On the 3rd marker I couldn't help it and dropped an f- bomb. The ironic thing is that it would have taken more time and pain to be medicated for the procedure than not. So it is done I have my gold down under. They can now find and destroy the cancer.
And she starts....My son is and as I will continue to say, my inspiration. I love being silly with him, reading stories to him, and play hide and seek. I just can't get enough sometimes. With my low energy we often find ourselves spooning on the couch while he watches a toy train videos and I sleep. I usually wake up to him gently stroking my cheek and looking into my eyes several times during the show. Just checking in with mama. I want every second to last extra long. I want to feel his soft hand resting on mine as we sleep together in the backseat of the car. I want to remember his genuine care and compassion he displayed by giving me a heating pad for my leg, a soft pillow, and handing me my cane and then telling me he is a "doctor for women". I want so badly to come out of my radiation appointment and answer my sons bold questions in an equally as loud voice. When he asks confidently in the full waiting room, are you all fixed now mama? Do you feel better? I want to yell, "yes I am". I want all the others in the waiting room who are witnessing my child's reality to stand up a give us a movie slow clap scene. Because in my movie everyone is healed and we grow old together, frolicking on the beach, watching great sunsets in Kauai.
Today I was enlightened by a new view. A big picture view of what life looks like. What does it look like? Day to day my life is challenging, I am living and "working" treatment. My schedule can change in a day due to my doctors. I can try to have more control but it usually doesn't work. I still ask questions but I am still flexing to their needs.
The bones of the story... My treatment continues. My general radiation and chemo were extended a week. Why? I am still trying to figure it out. I have 6 more radiation treatments to my chest. 2-3 stereotactic treatments to my chest tumor and 6-10 cyber knife treatments to my lady loins. So I don't really know when. All I know is that I may be done around April 6.
I also know that last week I had three little pieces of gold inserted into the belly of the beast- My vag cancer. My docs placed the leprechaun treasure with the intention that they can direct the cyber knife radiation directly to my cancer. It really hurt. I had my first fentanyl lollipop, it helped a little. It was a quick yet painful procedure. I had my nurse hold my hand but I yelled, "Mother Theresa" three times, for each injection. It hurt f$ing bad. On the 3rd marker I couldn't help it and dropped an f- bomb. The ironic thing is that it would have taken more time and pain to be medicated for the procedure than not. So it is done I have my gold down under. They can now find and destroy the cancer.
I just had my planning scan and now know yet another CT machine. I always ask a lot of questions about the flow of the office, clinic and hospital. I miss being on the other side. Even though I am a nurse and a patient, I am always the patient first. I am at the mercy of the system and the doc. I have to double and triple check the plan. Today it was labs. It took 3 try's to get my current labs. I had to insist that they review today's kidney function labs not last weeks. They said they could use labs from a month ago. I said I would like to have today's labs. My kidneys have been impaired and why not have the most current data? It's all good and done. I learned that one cyber knife treatment lasts an hour. This throws a new challenge for planning.
Final remarks... As I sit and wait for a ride, I watch people moving through the hospital busy on a break, going to and from appointments, or waiting for surgeries. I feel apart of it and not at the same time. I am here just like they are but lacking urgency or motivation. I am a patient and my job is to be patient and wait. Today I am doing my job. Sigh.
Sent from my iPhone
Sent from my iPhone
4 comments:
I'm not sure how I found your blog, but I have been following for a while, you continue to amaze me with your strenght! What a sweet Son you have. There isn't anything better than cuddling with your little one! Prayers and strenght to you and your family.
Hi Alexis,
I think of you often and wish I could be there to spend time with you. I hope you are able to return home soon. Max would love to hang out with Canyon.
Love and Prayers,
Kateri, Omar, and Max
Canyon sounds like an awesome, compassionate kid- but I wouldn't expect anything else from a child of yours. Wish we were closer. I am praying for you dear friend- so sorry you have to go through this.
I never thought of the patience in "patient" before!
You guys are amazing. Your wish for a slow clap movie scene brought tears to my eyes.
Post a Comment