The Patient Patient
Wednesday morning I was on the surgery table, drifting through a light anesthesia with memories of family luaus, coral reefs, and manta rays sloshing in my head. What a lovely Hawaiian adventure. Thank you, Mom, Jim, and Donna for traveling with us. And thanks to the crew of Uncruise for an amazing week. How is it possible? -- last week I was kayaking and snorkeling but this week I wake from surgery after having a port "installed." I don't know how to make sense of this reality. The boundary between health and wellness from disease and illness is territory I am still, after 3 years, learning to navigate.
I have been VERY reluctant to get a port. Every time a port was mentioned, during a difficult blood draw or infusion, I had a visceral reaction- NO! I much prefer being stuck 3 or 4 times than having a freakish bionic alien inserted in my chest. This week I was thinking about why I was so reluctant to agree to the port. It isn't the vanity; I don't care about the scar. And it's not worry over the very minor procedure. I didn't want the intimate and physical daily reminder. The port feels like an invasion, like a tether, tying me to treatments and illness. Most of all I am scared I will never be done with treatment, never have a time I don't need a port. I am afraid I will live the rest of my life with this port and die with it in my chest. I hate that. So I am struggling with how to accept my reality of new limits yet still feel powerful, with agency for my life and happiness. I will work on that. And will try and make friends with my new port. Maybe we should name her? I'm open to suggestions.
We were hoping for a "Porlock battle plan briefing" yesterday. But we are in a holding pattern, waiting to hear from my surgeon, Dr. Anna Rodrigues. It is human instinct to rush to treatment. Since I am asymptomatic and feeling well there is no reason to rush for surgery. In fact, treating too soon just bring the next occurrence sooner, trading away a month, or two or three when I am healthy. I will be a patient patient. I promise to give updates in a week or two, as soon as my treatment plan is set. For now, I am to stay busy and have fun -- Dr. Sekhon's orders.
hugs to all,
Michelle
Comments (18)
Hawaii was absolutely the best ‼️ I think if you travel enough Porlock will get lost somewhere. You are totally awesome! Mom
Wouldnt it be wonderful if I could lose Porlock in some remote corner of the world. Oh, I wish.
I totally understand your former resistance to a port. Although friends who have had them say how much easier treatment is with them. So impressed with how you express yourself also. Glad you had a great time in HA. Here's to feeling well and healing.
hugs to you Joyce.
What about calling it Powehi? Will forever remind you of this fabulous trip. Much love, Milly
Thinking of you, your strength, endurance, belief in yourself and ability to weather the storm. You are a warrior princess. Aloha ME
Maybe you could call it Lorna, from the novel Lorna Doone? Part of that novel was written in Porlock, Exmoor, apparently. All the best to you! <3
lots of love from us all
I loved our time with you in Hawaii. Thank you so much! Keep moving Michelle. The port is just a tool. Love you. Jim
Love your unflagging spirit! Jim said it well, it's just a "Tool." So, maybe a name that starts with a "T?" Here's a link to names with "T" - http://www.babynamewizard.com/baby-name/girl/t What about Tahulah, Tammy, or . . . Just a crazy thought!
Dear Michelle, you write so beautifully about your journey through this cancer process of health, remission, recurrences, battle strategies, peppered with just having fun with your beloved Bruce and your family. Michelle, you are an incredible inspiration to me and all who know you. Please know that although we do not see you guys every day, you continue to be in our hearts and prayers. The spoiled little corgis send licks and barks to you too. Never give up hope! ❤️Anne Marie, Richard, and the crazy corgis Jeeves and Bertie too!
Addendum to earlier comment: As I read your post late last night, and mused on an appropriate name for your port, I found myself thinking of it not as a port of entry, but rather as a porthole or perhaps a black hole through which Porlock can escape after finally realizing that he had picked the wrong and much-too-resilient mortal to visit. On a whim, I googled black hole and came across a just-posted article from The Guardian announcing the Hawaiians had been given the honor of naming the recently "photographed" black hole. They chose Powehi...meaning "the adorned fathomless dark creation." What a tool! 🎇🏝❤️
a fabulous name, I just have to figure out how to pronounce it.
I’ll ask my Hawaiian friend
Each day at a time hon... Keep doing things that make you happy if you can. We all admire your strength so much and send our strength across the miles! Kathy
Dearest Michelle, you are such a talented writer. Your description of your struggle about getting a port is touching, thought provoking and yet also amusing - talking about making friends with it and naming it. You always describe the myriad emotions involved in this battle with Porlock so eloquently. I hope the writing also gives you a little comfort and ongoing strength to keep up the fight. Thinking of you and Bruce and looking forward to hearing about the next battle plan. Thinking of you from far away down under. Karen x
Michelle, The port isn’t so bad. I wasn’t happy about getting one either. But now it is fully healed and very inconspicuous. Consider asking your doc to prescribe some lidocaine cream to use before each treatment. My new treatment plan includes 5 hour infusions. I think the port will make it a lot easier. Your attitude is amazing and truly an inspiration to anyone on a similar journey. I think of you often and send digital hugs. ❤️ Judy
hugs to you Judy. Thanks for the kind words. I try to be valliant, the compliment means so much coming from a fellow warrior.