Thursday, May 11, 2017

All in All, I Finally Hit a Wall

This  week I finally hit a wall. Maybe this is typical when facing cancer schmantzer, but on Monday I spent way too many hours on the phone trying to resolve a charge that Medicare would not cover.  Apparently, there is a Medicare algorithm that has decided that I love having needles stuck in me for more blood tests; accordingly, this Medicare person/thing/robot has decided that I must be committing waste, fraud, and abuse in order to perpetuate my love for blood draws. As if my level of frustration and pissment were not high enough, after I had spent way too many hours on that, I kicked up my frustration another notch so that I could deal with our Frontier bill, which had mysteriously jumped $25 in the last month.  After I finally came to the conclusion that Monday was a lost cause, I gave up and watched Dancing with the Stars, hoping that reality TV would make more sense than my life. Not so much. 

Tuesday promised to be much better because I had an appointment with the hematologist/ oncologist  (a former student) who is in charge of my chemo. (What a great way to celebrate teacher appreciation week!) As we discussed my case and how unusual it is, he presented options for two different types of chemo, and when I left his office, I felt pretty good that I finally had a plan for treatment.  

Spoiler alert: One of the things that I have learned from my foray into the world of cancer is not to anticipate outcomes because no matter what I expect, something else always happens.  

On Wednesday I had an appointment with my primary oncologist, which I thought was going to be a quickie follow up; unfortunately, nothing in this whole odyssey has been quick or typical or easy.  Throughout my life, I have always marched to a different drummer; in an unfortunate turn of events, cancer has decided to march to a different drummer as well. The diagnosis for my case has managed to befuddle nearly every doctor who has weighed in on it.  

When we got to my doc's office, she had a concerned look on her face...never a good sign. She went through my entire pathology report, line by line, and discussed everything in detail.  She told me that my case has the whole Tumor Board stumped, but they all finally had agreed on the chemo treatment. Despite their assessment, my doc was still uneasy and skeptical, and she didn’t feel good about proceeding based on guesswork.  

Since I trust her implicitly, I asked her what she would do if I were her mother.  At this point she said that she would feel much more confident about my treatment if she could get inside of my belly to see what is really going on.  After much discussion, we decided that surgery would be my smartest option. She will lead an after hours surgery sometime next week. While I am not thrilled with the idea of having my belly cut open (unless they can remove about 20 pounds of extra flab), I do appreciate the intensity and concern that my oncologists are showing towards me and my case.  I also love that I have become her pet project.

Of course, I wish that there were easy answers to figuring out a treatment plan for me;  however, I am glad that my oncology team is taking the time to consider what might be my best options. Despite the frustrations, uncertainty, and the hurry up and wait nature of figuring out what to do, I have been impressed by the empathy, compassion, and intelligence of my doctors,  and I am also touched by their concern for me.  

Now that I have mulled over what has transpired thus far, perhaps hitting a wall is just another step in helping me process all that has happened and to give me a comfort level with where I go from here....or at the very least, that is my story, and I am sticking to it.


  1. You are brave and wonderful to share your journey with us. I am so glad you have wonderful doctors who treat you as a person and not a "case." Many prayers, blessings, white light, good energy on the way to you from me!

  2. Phyllis, second opinion before surgery, maybe?

    1. Thanks, Julie. Since my docs have been in constant communication with other oncologists and pathologists (including the Cleveland Clinic), I am pretty comfortable my team is on the right path. If I begin to lose confidence in them, I will definitely seek out a 2nd opinion.

  3. Phyllis, my prayers for you continue. Sounds like the surgery may be the best way to go at this point, but why "after hours"? That sounds kind of clandestine.

  4. The reason that my doc has scheduled my surgery after hours (and into the evening) is because most of the surgical suites are booked up for the next month, and my doc wants to get me in as soon as possible.

  5. So glad you have such good doctors!! You know you're in my thoughts and prayers. We will, ALL of us, get you through this my friend. With you in spirit. Hugs and love forever. ❤️

  6. Thank you for sharing this Phyllis. I wish you the very best. I hope you don't mind if I quote your Spoiler Alert. I am pushing for a second opinion for my own cancer since I can see that it's not going away - not even one year of remission. What I do know is that everyone is different and I'm hoping this never happens to you. Your doctors sound wonderful!

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  8. You are brave and amazing. The frustrating thing is with cancer, you never really do know where you are. If there's a treatment plan, you're in, until the next scan, then who knows. It sounds like you're getting an education in this first hand, which I'm so sorry about. But how cool to have a former student oncologist! And so pleased your doctors sound excellent. (((hugs)))