Discombobbled!

Discombobbled is an excellent word to describe my current state.

Just when it finally seemed as though I was moving forward on my oncological odyssey,  cancer schmantzer had something else in mind.  The scheduling nurse called on Monday and said that there had been a cancellation, so I could begin the next set of procedures on Wednesday.  The prep for my endoscopy (non-surgical procedure to examine my digest tract) wasn’t too bad.  I only had to fast and go without caffeine from Tuesday night until Wednesday afternoon.  My hope was that the endoscopy would help my oncology team find the origin of my cancer.  After the endoscopic procedure, my doc told me that he found nothing but a polyp in my digestive tract.  He suggested we should do a colonoscopy (an examination of the other end of my innards)  to see if they could find the cancer there.  Of course, I agreed because I want to get this show on the road.

     

For those of you who have never had a colonoscopy, the prep drink is a million times worse than the procedure itself.  When I drank this prep 3 weeks ago before my hysterectomy, the directions suggested mixing this jar of nastiness with Gatorade.  No matter which flavor of Gatorade I tried (and lo, there are gazillions of flavors), it is still nasty, and mixing it with the colonoscopy prep does not help make either any more drinkable.  On Wednesday I mixed the prep with apple juice and white grape juice, and still, my gag reflex was in fine form.  

      

On Thursday afternoon after two days without food or caffeine, I returned to Parkview to have my colonoscopy.  Unfortunately, after the procedure, the surgeon told me he couldn’t get far enough into the right side of my colon because there were adhesions (and other big medical words) from diverticulitis.  The bottom line, of course, is that they still can’t find the place of origin of the cancer.  

Once again,  I said to my doctor: Well, FUCK!  This has become my go to phrase when I talk with my medical team.  (Factoid alert: the F word can be used as any part of speech except as a preposition)

     

I asked the surgeon if he had ever seen anything like my case, and he said this is relatively rare. While I have always been one who has marched to a different drummer, this news was a bit jarring, and I am more than a little taken back by this latest turn of events.  On the plus side, I am envisioning that my doctors will have something amazing to submit to the New England Journal of Medicine. If a Nobel prize is in the offing, my name needs to be in the footnotes.

     

Now that I have had some food, some caffeine, and some sleep, I will wait until Monday when the oncological team comes up with a plan for my treatment. If there is anything that I have learned from dealing with this is that anticipating outcomes is a fool’s errand, and I have learned to expect the unexpected.  Now I plan to move on to the next chapter of hurry up and wait. Because there isn’t a lot of point in going into a tailspin, I am now looking for my happy place, and in the meantime, I am envisioning a little cancer Pac Man, lurching and beeping around my insides, trying to gobble up all of the nasty cancer cells.

I am ready to begin this battle, but when the enemy has yet to be identified, it is difficult to know where to smack something down.  Hmm, that seems like a metaphor for the policies that our General Assembly has for education, but that will be the subject for another blog. 

Whatever the case, I will deal with whatever happens.

I AM NOT JOB!

In the big scheme of things, the frustrations from the past couple of weeks have been piling up: 

1. A brush with jury duty.

2. A boil water advisory while the water department waits for test results

3. The Cubs’ World Series Trophy isn’t coming to Fort Wayne

4. An inconclusive cancer diagnosis

SERIOUSLY?  WTF?

So here is the latest update on my cancer schmantzer odyssey.

While I don’t plan to be a Debbie Downer, my attitude is not so much positive as it is resigned; cancer is the ultimate game of whack-a-mole. While a person is looking one way, something comes from another direction.  No matter what I expect, the outcome will most likely be something else.  The most frustrating part of this whole odyssey is that it seems to be a matter of hurry up and wait.  I am not in any pain, but I find that I am fidgety and cannot seem to sit still. I have no idea whether there is a condition called “cancer brain,” but if there isn’t,  there should be. Reading used to be a fun escape, but now my concentration level is borderline ADHD.  I prefer watching mindless TV and Netflix. Focusing my anger on images of moronic politicians on cable TV gives me momentary solace, but unfortunately, they are cancers that cannot be cured.

Yesterday I had an appointment to find out the results of Wednesday’s PET scan. The results from my PET scan were inconclusive, but they contained lots of big cancery words.  Luckily, a physician friend read my scans and gave me the Cliff’s Notes version, which helped me put everything into perspective. The bottom line is that my oncologists need to find the point of origin of the cancer before they can begin treatment.  My next step is to schedule an appointment for yet another endoscopy/colonoscopy to find the next pieces to this elusive puzzle.  

Back to the big scheme of things:

- So far I do not have jury duty.

-The water advisory will be resolved...if only the water situation in Flint could be resolved as quickly and easily. 

-The World Series Trophy is not coming this way, but I will see it in July when we take the Bush Boys to see the Cubs play.

 -Even though my diagnosis and treatment plan are not complete,  I am fortunate knowing that my oncology team is working to put the pieces together so that my treatment plan works for me.

For those who know me, I like to have a plan, and I like to have things done yesterday. I have places to go and things to do, and I seriously want to get busy kicking cancer’s ass.  

People keep asking me if cancer has changed my world view, and if anything, the lesson that I need to learn from Job is patience.   I am a bit of a slow learner in this area, but I am working on it.   

All in all, it’s just another brick in the wall.

Just when you thought you had read enough blogs...

Even though I have always had an aversion to writing a blog, the amazing Stu Bloom recently taught me  how to create my own so that if you are interested in the latest details about my cancer odyssey, you will be able to read it with a click. http://qbg1.blogspot.com/  This has the extra added attraction for me in that I can  avoid  (for those of you who paid attention in English class) becoming the Ancient Mariner.

Today I had a PET scan.  We went to the PET Scan office, and what seemed like a scene straight out of a Sci-Fi movie,  a tech in a white lab coat came out and said, “Here is your drink, Phyllis.”  While it wasn’t nearly as nasty as drinking Miralax laced with Gatorade for other lab preps, it took half an hour to drink.  Then I was escorted into another room where I sat in a recliner with my arm hooked up to an IV filled with some radioactive stuff.  I asked the tech if I would glow in the dark when I got home, and he assured me that I wouldn’t.  However, I  plan to test out my theory by going into the basement and turning out the lights just to make sure.  After an hour of this, I got into the PET scan machine, which had an opening large enough that my borderline claustrophobia did not kick in.   All in all, the whole process took about two and a half hours, and it gave me a lot of time to think.

I have been doing a lot of mulling lately, thinking about cancer and other stuff.  The other day I started a list of all of the things  and people that really annoy me,  but then I decided that I didn’t have enough space on my hard drive.  I realize that I could  I make a list of all of the thing that bring me joy, but somehow, that doesn’t seem as much fun. 

Right now I am imagining all of these little cancer critters having a field day in my system until the day that they realize that they are messing with Phyllis Bush.   Granted,  I am feeling pretty brave and badass right now, but who knows where my head will be when the chemo begins and  tries to kick the crap out of me.  I am just hoping that doesn’t make me as sick as Gatorade made me before my colonoscopy.

I realize that  I am making light of a pretty serious situation, but that is how I roll.  Cancer is a such scary word, and I understand that we all  project our own fears about things that seem out of control.   For someone like me who always likes to have a plan and likes to have things done yesterday, I am trying to learn how to be Zen and how to find my happy place.

Here are some random thoughts that I have had recently:

1. I lead a rather self-sufficient and  quiet existence with my pack (Donna Roof, Max Quigley, and MacGyver), and while having lots of attention is nice, I am not used to having people being concerned about my health and well-being.  

2. People are frightened by the word cancer.  While this is not my favorite word, I also refuse to be defined by it.  I am still the same person, who just happens to have some random cancer cells that decided to land inside of me. 

3. In the big scheme of things, there are lots of people who are worse off than me, and I am fortunate to have what appears to be an excellent health care team and lots of friends and family to support me.

4. Speaking of health care, I am appalled that  lawmakers are still trying to do away with the ACA.  While it obviously has its flaws that need to be corrected, it makes me wonder about people who are not willing to figure out a way to help those with health issues, but I will leave that for another blog.

While I have been away from doing my due diligence with regard education legislation, it appears as though the Indiana GOP has continued to micromanage public education.  Even though I am not surprised by any of it, I am disappointed (once again) that they appear to have no clue about what is good for children or for the common good.

Nobody’s Gonna Break My Stride

There is a cancer in the body politic. Our lawmakers seem more intent on playing to the voters they choose rather than on serving all of their constituents. We have grown to expect that the Super Majorities will be more concerned with consolidating and maintaining power and control than with with governance. At this point, I see very little chance for a cure of this cancer.

There is also a cancer in the body of Phyllis Bush. On Friday I was diagnosed with ovarian cancer. Even though what lies before me feels like a kick in the teeth, I have chosen to be annoyed rather than bummed; in fact, this diagnosis has allowed me to give new meaning to the word pissment. I usually share my middle school mean girl thoughts and potty mouth only with my friends; however, when I was in recovery after my surgery and my doctor gave me the word, all I could think to say was the F word.

I know that my doctors will provide me with a course of treatment options, and together we will decide on a course of action that will provide a cure. Unlike politicians, they are in the business of doing no harm.

Having said that, I know that my family and friends will love me, support me, and make me laugh.

There are way too many injustices that I need to rectify.

There are way too many politicians who need my advice and counsel--and my nipping at their heels like a rat terrier.

There are two grandchildren that I need to see grow up.

Along with thoughts and prayers, here are some other things you can do:

1. Prepare yourself with facts and go talk with a legislator. Leave a one page fact sheet with his or her legislative aide, explaining the issue and how it will benefit him or her.

2. Write a letter to someone you love--to your mom or dad, your grandfather or your grandmother, your grandson or your granddaughter asking them how they are and telling them who you are.

3. Never lose your sense of humor or your sense of wonder.

4. Adopt a rescue dog or cat.

5. Take a kid to the zoo and/or to Zesto.

Years ago when I was in the midst of a difficult time, I used to pop a cassette in the car, turn up the volume, roll down the windows, and sing “Nobody’s gonna break my stride; nobody’s gonna slow me down” at the top of my lungs.

...and that is what I intend to do.

In the following days and weeks, as I learn my course of treatment, you are welcome to follow along (if you wish) as I begin this new adventure.