Wednesday, June 14, 2017

Not So Brave

Ever since I started writing this blog, both friends and acquaintances have been telling me how brave and how courageous I am.  All I have to say is this--not so much.  

Words that I never thought would come out of my mouth are that I have been having difficulty getting my appetite back.  Apparently this is pretty typical after major surgery. Along with that, some friends seem to think that cancer is causing me lots of pain.  Interestingly enough, I have been asymptomatic and pretty much pain-free since the beginning of this nightmare. The closest thing to pain that I have experienced is that it is difficult to get comfortable.  I bounce from the chair to the sofa to the bed in an effort to find a position where I don't feel like I am channeling a wiggly first grader.  

Ever the good student and teacher pleaser, when one of my docs told me to make sure to get enough protein before I start my chemo, I decided that a very high protein drink would be a good solution. On Friday I drank some of this protein potion, and  I followed it up with more on Saturday.  Much to my dismay, the result was that I felt as though someone had blown up a beach ball and stuck it in my gut, and I was miserable.  Consequently, I only ate bland foods on Sunday in order to get my system settled down, and I started to feel much like myself again and like I was back on track.  However, on Monday a few bites of yogurt made me feel sick to my stomach.  

After two days of feeling as though I had been run over by a truck,  all of my bravado and derring-do went right out the window as did my self-confidence and my fighting spirit.  I thought to myself, “If I am scared to eat much of anything, how I am going to face the vicissitudes of chemo?   How I am going to face the lack of energy and the fatigue? How am I going to do all of the things that I want and need to do?”  
This new reality was a frightening slap in the face as I started questioning my own strength and my own resolve and my own willingness to keep fighting.  

The good news is that after yesterday's visit with my oncologist and with a dietitian, I was reassured that everything that I have been experiencing both physically and emotionally is pretty common, which was a huge relief. My chemo treatments are scheduled to begin in a few weeks, and  that will give me more time to heal from my surgery.  The better news is that if I feel up to it, I will be able to take my grandsons to see the Cubs.

All of this is to say that my first goal will be to build up my strength, endurance, and appetite enough so that I can accomplish that.  I will be setting smaller daily goals of increasing my time on the treadmill and walking a little farther to meet  Donna when she walks the dogs each day.  I plan to add more foods (gradually) to my diet to test out what I can tolerate.  

The bottom line is that this patient needs to learn to be patient and to adjust to my new normal.   Baby's all about baby steps.

Wednesday, June 7, 2017

Today's Not-Too-Deep Update

Throughout this whole cancer schmantzer odyssey, I have found that it is a fool’s errand to anticipate outcomes; consequently, I have learned to expect the unexpected. Yesterday on the drive to my appointment with my gynecological/oncologist, we joked that she might say, “We were just fooling. You are outta here.”

While that would have been nice, it wasn’t to be. My doc explained in detail with a lot of big cancery/medical words about what she had found during my extensive surgery. Apparently, my surgery was much more involved than I realized.

After we discussed the entire pathological report, I asked my doc some not so scientific but very practical questions. The good news is that I can start taking baths instead of showers, I can sleep on my stomach, and I can drive again--as long as I can brake quickly. Since I have been managing to drive the electric grocery store carts, I figured that driving my car would be a piece of cake.

Among other topics of importance to me, I asked the doc if I would still be able to take my grandsons to a Cubs’ game that we have been planning to attend in July. She said that she thought I would be able to do that but that I should have a back up plan just in case. When I asked her about my chances for survival, she said that while this stage 4 cancer is incurable, it is most definitely treatable. She said that most of her “chemo girls” begin to feel better and stronger once their chemo has begun. I can live with that.

Interestingly enough, she told me that my case had gone before the tumor board again—a record 3 times—and she asked all of the docs some hard questions about whether or not they should proceed with chemo, and they all agreed that this looks treatable. Right now it looks as though my chemo treatments will be different from the original plan. I gathered that my oncologist will probably want to start the chemo as soon as possible. As long as my oncological team thinks I am healed enough to begin, I just want to get on with this.

On the way home, Donna asked me how I was feeling both physically and emotionally. Physically, the site of the incision is still pretty tender and slightly uncomfortable. Emotionally is a different story. This whole magical mystery tour has been going on since last September, and at this point, I feel slightly exhausted and overwhelmed. Having said that, I try to make it a point not to feel sorry for myself or to play the victim, and while my current situation is not one I would have chosen, I will deal with it in the way that I have always dealt with whatever shit-storms come my way. I will put one foot in front of the other, I will set small goals each day, I will continue to appreciate the friends and family who have offered me so much love and support, and like Charlotte Emory (the main character in Anne Tyler’s Earthly Possessions), I will keep on truckin’.

Given how screwy and unpredictable my case has been, I fully expect my oncologists to be in the running for a Nobel prize for medicine, and since I have total confidence in them both as physicians and as caring human beings, I hope they start engraving that prize very soon.

Sunday, May 28, 2017

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.

Sunday, May 21, 2017

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.

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.

Monday, May 8, 2017

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.

Friday, May 5, 2017

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.