Advocate (noun) a person who speaks or writes in support or defense of a person or cause; a person who pleads for or in behalf of another; intercessor.
I am blessed with family and friends who are walking with me on this journey. Lisa calls and sends pictures of beautiful baby Vivie, my sweet grandchild I have not yet had the opportunity to cuddle. Laura has totally capsized her life (and that of her family) to provide transportation and support for my many medical appointments. You, my dear friends, family, and people I haven’t even met, have run errands for me and sent well wishes, cards, and flowers my way. You, my advocates and intercessors, have stormed the gates of heaven with prayer. I sense your love and support.
But, and this may come as a surprise to some of you, I have not done a good job of advocating for myself.
One week post op, October 24: The sutures in my neck were removed, and I was surprised at how…uncomfortable…that simple procedure was. Laura was with me, and from my facial expressions, she knew I was struggling. My usual high threshold for pain wasn’t working.
Two weeks post op, Monday, October 31: I had an appointment with a speech therapist. My neck was stiff and swollen. I asked her if there was anything I should be doing to help the cause. She looked puzzled, left the room to talk with a physical therapist, and returned to tell me they suggested gently turning my head from left to right to help it stretch the muscles. Nope, nope, and nope. Nothing else could be done with speech therapy until all the tongue sutures were gone. My ability to swallow was considered “on target.”
Tuesday, November 1: I had an appointment with the surgeon to discuss the treatment options regarding the “not clear” margin leftover from the Oct. 17 surgery. After that, I asked about my neck because it really, really hurt. He seemed surprised and said most people think the tongue hurts more than the sentinel node biopsy site, and with a shrug of the shoulder, suggested a heating pad.
Right there. Full stop. That’s where I made my error. Both Laura and I saw it, and felt like my concern was blown off, but we did not speak up. Laura has a beautiful balance of knowing when to ask medical questions and when not, so this was not her responsibility. She was respecting me. It was singularly my responsibility, and I blew it.
In a world where my diagnosis of this form of cancer is statistically incredibly rare, why did I so readily accept the explanation that what I am experiencing is simply not how it goes for most people? And what does how things go for other people have to do with me anyway? Absolutely nothing.
Wednesday, November 2: Multi-hour coughing fits following efforts to talk, increasing pain and swelling of the neck took every bit of my attention. Cause of the pain was still unknown.
Thursday morning, November 3: I sent Laura photos of my now alarmingly swollen neck. She sprang into action, contacting the surgeon’s office and by afternoon, steroids and antibiotics were prescribed. My dear friends Bonnie and Kathleen are very efficient RX delivery persons.
Friday morning, November 4: Any difference? Only that I hurt worse. My head felt like it was going to explode. In just a few more hours, I would be at the University of Iowa Cancer Center for a second opinion for an ongoing cancer treatment plan (nothing to do with the neck pain). I am ever so thankful for this appointment and opportunity.
The story of my time at University of Iowa Health Care will be told in another post. It’s a humdinger of a tale. This post is about advocates, you beautiful people, you. Even when you did not know all that was going on (for that matter, neither did I!) you were my advocates, my intercessors. I was confident of your prayers, love and support.
I am trying to be a better advocate for myself but it’s hard to break a lifetime of habit. I am learning to trust that inner voice that tells me when something isn’t right, and then taking action on that belief. Most of my adult life I have fought hard to protect those around me. I find standing up for myself to be far more difficult. We often hear how it is more blessed to give than receive. From where I’m sitting, it’s a whole lot easier, too.
Here is the song that has helped calm my nerves and got me though these days.