When You're Down and Troubled...

I had major surgery on Monday, May 22nd so that my oncological team could try to find the elusive origin of the cancer that is lurking around in my body parts.   In spite all of my bluster and bravado about my kicking cancer’s ass, right now I am in the midst of having had my ass kicked pretty badly....and I have to admit that I have become quite the weenie. 

As many who know me have said, “You have never done things the easy way.”  Of course, this cancer journey has been no exception.  As I mentioned in an earlier blog, my greatest fear is being helpless and dependent, and that is pretty much how I have felt since Monday.   I now have a Frankenstein cut from my navel on down, which most likely will limit my bikini wearing possibilities for this summer.  Even with the ugliness of this incision,  my inability to use my core muscles has made daily functions nigh on impossible.  Daily activities--turning over in bed, trying to get disentangled from IVs, trying to get out of my hospital bed, trying to do anything involving those core muscles--have become a near Sisyphean ordeal.   Despite my apparent setbacks I am getting better one day at a time.

Nevertheless, the caregivers at Parkview were helpful, kind, and encouraging.  My family and friends have been helpful and kind and encouraging.  Their collective, nameless acts of kindness and love are what are helping to propel me through this dark period where I have been nearly totally dependent.

However, the point of this blog is to thank Donna Roof. She has been and continues to be my angel of mercy. She has been my main caregiver, advocate,  and cheerleader.  She stayed at the hospital with me every night to make sure that I was okay.  She has encouraged me every step of the way, keeping track of my walks and my food intake, and making me come up with daily goals so that I will get stronger.  

My caregivers: Max Quigley, Donna Roof, and
MacGyver (MacG never leaves my side).

In the words of James Taylor, 

“When you're down and troubled And you need a helping hand And nothing, nothing is going right Close your eyes and think of me And soon I will be there To brighten up even your darkest night.”

However, I have had excellent training as a die-hard Cubs’ fan, and I have learned that disappointment and despair are just another day at the ballpark.  

While the score is currently Cancer 1, Phyllis 0,   I am only at the bottom of the first inning, and I have lots of good folks in my corner who are rooting for me.

Family, Friends, Frivolity, and Fears

My life has been centered around appointments with various and sundry doctors since April 7th. There always is an ominous feeling that enshrouds the car with every doctor visit as I wonder what fresh hell am I about to experience. Now that my surgery is scheduled for this week, I had no appointments during this past week, and that has felt borderline weird.

Despite the dearth of appointments with my docs, I have managed to keep pretty busy. One of the great things about the people in my life is that those who know me well know that I do not like to dwell on stuff over which I have no control. They also know that I like to laugh and to do silly stuff.

Among the week’s highlights that made me smile this week were the following:

Mother’s Day weekend with the family
Unexpected reunion visit with my sister (and her husband) and my brother
Pissment party with my NEIFPE friends/minions

I had lots of excellent family time this week. Spending time and connecting with my family was good for my mental health, and even though I know that my family cares about me, their physical presence means a lot.

When I first learned of my diagnosis, we decided to have a Pissment Party to express our outrage at cancer and all other things that are annoying before I started my surgery and chemotherapy. Usually, when we have our NEIFPE (Northeast Indiana Friends of Public Education) get togethers, several of us are inspired to do something silly that will make everyone laugh. However, after a trip to the party store, I was decidedly lacking in inspiration. By the time yesterday afternoon rolled around, nothing was seeming very funny and the whole idea was falling into the “it seemed like a good idea at the time” category. Plus, the rainy, dreary weather did not help my mood.

Having said that, one of the things that I have always loved about our NEIFPE group is that if one of us can’t do something, someone else steps up to the plate, and in typical NEIFPE fashion, a few minutes before the party was to begin, two of our friends arrived with a Power Point sing along.
Meanwhile, the only inspiration that I could generate was to provide paper and pencils for everyone to make lists of people and things that piss them off. After much food and drink and laughs, we had no trouble coming up with annoyances, and many had several pages of pissment. We all laughed as people read their lists, especially at the bottled up frustrations and anger we were all feeling. After that, we had our sing along with lyrics and pictures that were hilarious and touching. All in all, we had a lot of laughs, all of which left me feeling very loved and supported by my family and friends.
All of the above has given me lots of time to think about what lies ahead of me. While surgery is not on my hit parade favorite things, I do want to get this show on the road. I hope my surgeon goes in and finds out where the cancer originates and digs out all of the unwelcome cancer cells and gets rid of as many of the little critters as she can round up.

When people ask me if I am fearful of the surgery or of cancer, the answer is NO. While I am usually fairly unflappable, there are very few things that frighten me. The only thing that worries/frightens me is the prospect of losing my independence, the prospect of not being able to do things for myself, the prospect of being helpless. Being unable to fend for myself is truly frightening for me.

In the words of Maya Angelou: Having courage does not mean that we are unafraid. Having courage and showing courage mean we face our fears. We are able to say, “I have fallen, but I will get up.”

Facing my fears is not going to be easy, but I am fortunate that I am surrounded by family and friends who love and support me. I know they will do their best to help without making me feel helpless.

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.

All of a Sudden, Everything Has Gotten Real!

Now that it looks as though a treatment plan will be falling into place today, I am slightly befuddled that I am having a difficult time writing anything. I have always been a person who wants and needs a plan and who wants to get things done yesterday. While it seems as though it has been a lifetime since my cancer schmantzer odyssey began, in point of fact, it has only been a little over a month.

During this past weekend, my gynecological oncologist called me (Yes, I repeat: SHE CALLED ME AT HOME ON A WEEKEND) to discuss the status of my case. She laid out all of my options, and she empathetically and directly asked and answered questions. She told me that her team would like to begin my chemo treatments as quickly as possible. While it is impossible to know how well I will tolerate the chemo, she told me that most patients are able to continue their normal lives; however, she told me that I should expect to be tired.

Because not disappointing my grandsons is at the top of my list of things I do not want to do, I asked her if I would still be able to take them to a Cubs’ game this summer. Since that would be near the end point of my 1st cycle of chemo, she checked her calendar and said that would work as long as I don’t mind being bald. When I told my son about this, he suggested that I should start looking for some kickass wigs. Since I really can’t see myself as a wearer of wigs, I began to think of the possibilities. I have a huge assortment of Cubs’ (and other less appropriate) caps that I could wear. Perhaps I might encourage the Bush boys to paint a Cubs’ logo on my bald head.

Who knows how I will deal with losing my hair?  Whatever the case, I will still be me. While I was relieved that my doctor called and began to sketch out a plan for my treatment, I realize that what is ahead of me is not going to be a walk in the park. Right now I am not sure of how I will respond to any of what might happen, but I am sure that all of a sudden this shit got very real.

My plan at this point is to put one foot in front of the other and to deal with things as they come.  In the words of Eleanor Roosevelt: 
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.' ....and so I hope it is with me.

Years ago when I had the opportunity to go skydiving, of course, I said yes because it seemed like a good idea at the time. As my date with my own derring-do approached, people kept asking me if I was afraid, and the more they asked, the more apprehensive I became. However, one of the coping mechanisms that I have used throughout my life is that in the face of something dreadful, I share my story about what lies ahead with the hope that the more I talk about the scary thing, the chance for me to back out or back down will diminish, and thus, the reason for this blog. By sharing my odyssey with others, I am relying on the strength and concern and love of others to help get me through my next phase of apprehension.

For that, Dear Readers and Dear Friends, thank you for helping me cope with whatever lies ahead.

Cancer Schmantzer Update

Now that I have had the magical elixirs of a little coffee, a little food, and a little sleep, here is the latest update from the annals of Cancer Schmantzer. Once again I was in the throes of colonoscopy prepping. When I was in my 40s and had my first colonoscopy, drinking the prep was disgusting, but I also had a GI system that would allow me to eat or drink nearly anything, especially knowing that I wouldn’t have to drink this potion for another 10 years. However, now that my digestive system has become much more sensitive and now that I have had to do the cleansing routine THREE times the past 4 weeks, simply thinking about drinking this jug of nastiness causes my gag reflex to go into high gear.

While I was in between sips of drinking said prep, I thought of questions for my oncology team. For those of you who have never traversed the cancer landscape, one of the most frustrating aspects is that treatment is not like it used to be when my mother was being treated for cancer 32 years ago. At that time, chemotherapy was pretty much one size fits all where oncologists blasted the patient’s whole body. With all of the advancements in recent years, treatment is now personalized and targeted for optimum results.

The purpose of yesterday’s colonoscopy was so that my doctors could determine whether or not the cancer originated in my colon; now they are reasonably sure that it actually did originate in my ovary. So now they will consult with my gynecological/oncologist (whom I trust implicitly). The good news is that a treatment plan will be coming soon.

The cold, dreary, rainy weather has not added much to my situation. My feeling of being more than a little out of control seems to be running parallel with how out of control our political climate seems to be. Despite the medical news that keeps coming my way, I am heartened by the good people in my life who have brought me what Wordsworth called “the best portion of a good [person’s} life: [the] little, nameless unremembered acts of kindness and love.” Through a great deal of darkness, my family and friends and my medical team are helping me to learn patience and to look for the silver lining.

While I was receiving first class care from my physicians, I was struck by the irony of the spineless House GOP members who were busy patting themselves on their collective backs as they celebrated National Day of Prayer and then voted to repeal and replace Obamacare. While I realize that most of this was political theater, I am still appalled at the unseemliness of their giving one another high fives about cutting health care from millions of people while the Dems were busy singing and taunting them.

What the hell is wrong with these people?  Has winning become more important than being human?

Since today is Cinco de Mayo, I plan to look for some guacamole and a margarita to help me find my happy place.