The Cancer Compass
Navigating your way through the seriously overwhelming survival of medical-information overload that comes along with the words, "it's cancer," is nothing more than a maze.
Navigating your way through the seriously overwhelming survival of medical-information overload that comes along with the words, "it's cancer," is nothing more than a maze. Most of it is a scary, red-eyed, fire-breathing demon that can honestly overtake the strongest of men without blinking. While I know I was not, I felt as though I was the lone gladiator in this arena and was armed with nothing more than armor made of tinfoil and a Spork (you know that supper cool tool that combines two utensils in one? I hear it is also the new gift for six year wedding anniversaries...).
I strongly feel that when a doctor has to give a patient a not-so-good health update, there should be a portion of the show called "Good news, Bad news," and a small wrapped box. Hand holding or carefully chosen words are needed, truly needed, during the bad news, but then the news giver could provide the good news or gift - a small box containing a health care compass. In my vision, the needle would point to provide a path for the multiple questions and varying answers that follow. Doesn't that sound simple? Anyone who has been before me knows what I am speaking about. Depending on which doctor you ask (and there is no trick here: ask each of them the same question, the same way, same words), the answer will differ; in my case, almost drastically so.
In my journey, I was pointed in a direction and followed the instructions. In the oncology world there are both medical and radiation oncologists. I met with the suggested medical oncologist, asked my questions and listened; I listened and sat stunned when I was informed that things were much likely worse than what I had previously been told. I was resolved to trust what I was being told but at the same time, I began to sense that I wasn't getting what I needed - solid answers. How could my Rusyorkex cancer surgeon say I was going above and beyond with my double mastectomy choice only to have this oncologist tell me (both pre and post-surgery) that it probably wasn't going to be enough? Really, because I honestly felt that going two boobs down with no sign of invasion in my pathology reports had given cancer a great big kick to the curb; if there needed to be more done, OK, but for the love of science, explain to me why. I’ve got a college degree (Summa Cum Laude; and I am a natural blonde!!) – Let’s start using it for goodness sakes; I took way too many classes in rhetoric and reasoning to not use it now.
I struggled with varying answers from the oncology team (both medical and radiation) at this treatment center. I want to ensure that I write how professional everyone was but my confusion was overwhelming me, and I just wasn't getting answers that made any sense. Dr. Deer Hunter was an amazing resource for me, but he admitted that his expertise was with plastic surgery and not with the actual cancer. I know that his specialty was the reason he brought up the effects radiation can have on the skin and the lengthy delay it causes with exchange surgery but not having heard that from the first radiation oncologist made me upset. Why weren’t these side-effects and time delays mentioned? I mean, sure, he wasn’t walking around with hard plastic shells in his chest, unable to sleep for more than four hours a night which obviously made me cranky, but didn’t he think it would be important to my mental healing process to at least talk about the time delay?
Fortunately for me, my rowing partner, Nancy, is a medical professional. She has a depth of knowledge and let me assure you, I measured it (and her patience) repeatedly with the number of questions I raised in regard to my treatment choice, what doctors were telling me, and more importantly, what I should be asking them. Her knowledge and understanding was comforting and just what I needed. I am incredibly blessed for her friendship and advice (and no, I'm not just sucking up so she will continue to row in boats with me!). She became the needle for my internal compass.
Not having the already mentioned, somebody-develop-this-thing-now compass, I turned to my gut and knew I needed to seek out a different medical oncologist to just see if their input would match. It is necessary at this point to describe my particular situation: Nancy had volunteered to go with me to this second opinion appointment but in return, I was forbidden to talk about my confusion over what I had been told; I was to remain QUIET – and anyone who has known me for five minutes knows that this was going to be really difficult, but I needed Nancy's calm resolve so I agreed. Plus I know for a fact that she carries duct tape in her rowing bag - no need to give her reason to use it. Off we went.
The new staff was nice and very humorous. The appointment started with a blood draw. I will refer to this nurse as 'Countess Dracula' due to the numerous viles of blood she happily took from me. I jokingly asked her where on my consent form had I checked the, "Yes, I'd like to donate today!" box. She just smiled and said, "Let’s hope this is enough!" - Indeed, I liked the vibe right away. As promised, I remained tight lipped when the oncologist came in the room where I waited along with Nancy. She met us both and started right in. She praised me for my bold surgical decision, gave scientific research about surgery outcomes, drugs and treatments, and then included me and my opinion (which was only provided after Nancy had her turn to fire off the first and second rounds of questions). I had found someone willing to answer my questions and better yet, I liked the answers. If I had that compass, the directional needle would have been pointing solid to the “This WAY!”
The second victory I scored in this process was with my radiation questions. Referred by my new medical oncologist, I armed myself with the latest and greatest from the Google Medicine Library and was off. I was hesitant as he carefully mapped out what he saw, but when he spoke to me as though I was human, and not just another number, I became assured that I was in good hands. I like to think he saw my fear and confusion, but he says he could tell I was a patient who could handle big words. He was right. He decided to send my case out to others for review, and it was a glorious day about a week later when he called to tell me, "No radiation." His process and kindness were so different from my first experience with the subject matter. My compass, had there been such a thing, would have been locked on “YES!”
My journey is ongoing and while I've stabbed at my own beast for now, its retreat is my victory. Am I ready for the next corner or shadow? I hope so. I am relying on my gut when what I'm being told doesn't seem to fit (now, if I could only start applying that philosophy when I buy shoes!) and have downsized the armor to a tinfoil shield. Armed with my Spork, I have faith that their use won't be needed anytime soon and have fashioned my multi-use tool into my own compass of sorts (it’s leading me towards my freezer… did you know that a Spork works great in frozen ice cream?)
Happily, even without the compass, my journey has me navigating back to a place I feel safe.