Saturday, October 27, 2018

Side Effects: The Gift that Keeps on Giving

When last we met on this blog, I was concerned about my hair falling out and about gluing my fingers together. Rather than waiting for the anxiety provoking event of hair loss to happen, I called my hairdresser and asked her to give me a buzz. As much as I anticipated crying and gnashing of teeth as I saw my gray locks fall to the floor, that wasn’t the case. Much to my surprise, I actually  like my new look.  Now I can shake my head like my dogs do rather than blow drying my hair. When my head was completely buzzed, Donna asked Lucy to give her a quasi-buzz in solidarity. Such is the nature of a true partner!

Even though I had been looking forward to attending the 5th annual Network for Public Education conference in Indy for the past year, my anxiety about Sherlock, my hair loss, and my finger cuts was pretty much off the charts. What I didn’t count on was additional side effects on my skin. When we got to the hotel in Indy, almost on cue, the skin on my face started peeling, and my face felt as though it was on fire. That has now been replaced with an itchy rash on my arms and chest that is driving me bonkers. Last Tuesday when I went in for my chemo, my oncologist decided to let me skip my treatment to give me and my skin a break. Side effects are the gift that keeps on giving.

Back to the conference...public education advocates attended the NPE Conference, and the experience was positive, inspiring, and energizing. Despite all of the negativity that the news brings us on a daily basis, the conference was warm and hopeful and collaborative. On a more personal note, this was the first year that NPE gave an award for grassroots activism (in my name), and I am still blown away by that honor. “The award will be given out every year for teachers, parents, and other activists who display courage, tenacity, and heroism on behalf of public education and the common good.”  This year's winners were the teacher-activists from SOS Arizona who won the right to put a referendum on the ballot about vouchers.

As you have probably noticed, I am used to getting attention as a smart-ass,  but getting attention (and a standing ovation) for something like an award in my name was unexpected and mind-blowing, and I am still at a loss for words for what this meant to me.

Phyllis Bush gets a standing ovation at #NPE18indy before bestowing the first annual grassroots awards that bears her name.

When I first began this cancer schmantzer odyssey nearly two years ago, I had lots of concerns. Every time that we went for my doctor appointments, I learned not to anticipate what might happen because no matter what I anticipated, it was always something different.  I have learned that I can deal with sensitivity to cold, lactose intolerance, neuropathy in my feet, peeling skin and rashes, a recalcitrant colostomy bag named Sherlock, and who knows what other side effects are coming down the pike.
In the words of Roseann Rosanna Danna, “If it's not one thing, it's another. It's always something.”

Despite the crap sandwiches that I have been served lately, I am fortunate to be surrounded by family and friends whose love and support make me realize that there is good in the world, and it is worth fighting for.

Friday, October 12, 2018

Lucy, Ethel, and Sherlock

One of the new side effects that I have experienced with this round of chemo is a preponderance of excessive skin drying and cracking, resulting in what looks like random paper cuts on my fingers. Fortunately, I was able to get an appointment with a dermatologist who specializes in chemo related skin issues. In addition to getting some prescriptions to help give my skin some relief, my doctor recommended using super glue to close the cuts, and I am happy to report that super glue did help close the wounds and give me some relief from the ouchiness and bleeding of all of the cracks and quasi-paper cuts on all of my fingers. However, in my zealous attempt to close all of the wounds, I inadvertently glued my fingers to the super glue container. This added a Lucy and Ethel element to this adventure as Donna tried rubbing alcohol, finger nail polish remover, and a pair of scissors to pry my hands from the super glue container.

In the last episode of my adventures in Cancer Schmantzer land, I was dealing with a recalcitrant port with a mind of its own. Last Monday when I went for my chemo treatment, I suggested to my nurse that the port was probably not going to work, so we might as well prepare to get my blood work done the old fashioned way--intravenously.  Now that my life seems to be lots of trips through the twilight zone, my port decided to work. Score one for me. However, that small victory was short lived. Right after the port began to work, my colostomy bag started to leak. While connected to my IV hook ups, Donna and I headed to the rest room where she morphed into becoming the poop whisperer; she helped clean me up, change my clothes, and then we went back to business as usual. Ah, such is my new normal.

In the middle of this whole batch of crazy, I have been spending a lot of time in anxiety land thinking about my attendance at the upcoming Network for Public Education conference. Since this conference will be held in Indy, I have the honor and responsibility of welcoming people to the conference and of introducing super star, Diane Ravitch. While I am thrilled with the prospect of this, I am also concerned that I will wake up that morning, and as predicted in the side effects to come, my hair will all be lying on my pillow case, and I will be looking like a bald cartoon character.  However, I am packing two wigs and some baseball caps, just in case of a hair emergency.  Add to that my concern for Sherlock (aka No Shit, Sherlock), my wayward colostomy bag, which seems to have a mind of its own.

On another note, yesterday I had lunch with three of my former students from the Class of ‘88 which helped to alleviate some of the frustrations and anxieties of the past week. Besides the stimulating and interesting conversation, I was heartened that “the girls” that I had remembered so fondly have become amazingly thoughtful and kind women. We talked about their lives, their hopes and dreams for their kids and for themselves, and their concern about how mean spirited and exhausting the world has become.

Despite the crap sandwich that life has given to me in recent months, I try to remember the words of Louis Armstrong, "I think to myself, what a wonderful world."

Wednesday, October 3, 2018

My Terrible Horrible No Good Very Bad Week

I usually try to blog every few weeks, but recently, I have not felt much like blogging. While my last chemo treatment was relatively unremarkable, my port once again decided that it didn’t want to function properly. Accordingly, my nurses had me go through the usual drill: raise my arms over my head, lean to the left, lean to the right--the only thing that was missing was being asked to stand up, sit down, fight, fight, fight....and maybe a trapeze. When those moves did not work, my nurse administered what is called a “clot buster,” and then after an hour or so, the chemo proceeded as usual.

The extra added attraction for this more powerful round of chemo is that I have a whole new set of side effects. My skin has become so dry that I now have what looks like paper cuts on my thumbs and fingers, limiting my manual dexterity. The only thing that seems to help is to put medicated lotion on my hands and to wear gloves to bed, making me look pretty much like Mickey Mouse when I get ready for bed.

Adding to the stress of the week, our super happy, energetic and spirited dog, MacGyver, ended up at the Emergency Vet for several days. We finally were able to bring her home on Friday, and she is slowly getting back to her old self.

Unfortunately, layered on top of all of this, I have been watching this sad spectacle of the Kavanaugh hearings, and I have been dispirited by the responses that I have been hearing and reading.  Many  have chosen sides,  but I am astounded by the level of acrimony and vitriol being used to defend their positions. I am disappointed by the false narratives and by the shaming and blaming and by the us v. them  herd mentality that seems to be omnipresent. I am left to wonder what has happened to compassion and empathy?

Despite the vile words of some on social media, I wonder how we have allowed ourselves to be complicit in this ugliness? During my two year odyssey with cancer, most of the people that I have encountered have been kind and decent, and I am left with the same hope that Anne Frank expressed:
“Despite everything, I still believe that people are really good at heart."

Tuesday, September 4, 2018

On Learning Curves and Other Things

The learning curve that I have been experiencing during the past six weeks since my surgery has been beyond my wildest imagination. The trip from surgery to colosotomy to chemo has been a long and arduous road, and the path has been steep. I am a person who values getting organized, having a plan, figuring out what needs to be done, and then moving forward. Unfortunately, life does not always move according to my plans, and now I am learning to adapt to my new normal. I am learning to deal with the frustration and indignities of realizing that I am not in charge of much of anything, much less my life or my bodily functions.

Even though I have never been a fan of sophomoric bathroom humor, I can now give my middle school grandsons a run for their money with poop and fart jokes. While most of us never even think about the number of times we pass gas during the day, it is a completely different reality for me now. I can often feel my shirt start to move on its own as a result of gas, feeling as though someone is popping bubble wrap on my stomach. Yes, this is my new normal.

While all of this is somewhat funny now, I will spare you some of the realities of the poop bag leaks, the raw skin under my colostomy bag, the anxiety of trying not to get too far from home for fear of accidents, and the list goes on and on. I realize that one of these days, I will adapt to all of this, but for now, I am still learning, which has given me the time to think about a lot of important stuff.

Interestingly enough, our young minister came over to visit last week. Being a cradle Episcopalian, I am uncomfortable with lots of “churchy” stuff, so I was not sure what to make of his visit. I told him that I hoped he hadn’t come to perform Last Rites. He assured me that that was not the case. After that, we talked about everything from politics to theology, but he caught us both up short when he asked us the question that everyone asks, but which sounded different coming from a rector: How ARE you doing?

Donna and I are both pretty practical, and neither of us spends much time feeling sorry for ourselves or wallowing about our lot in life. We figure out a plan and then deal with stuff as it comes our way. However, his question (How ARE you doing?) caused us to have a serious discussion about the issues and the potential dark spaces that lie ahead. While such conversations are never easy, they are conversations that need to be had, and we will have more of them.

Needless to say, this chapter of my life has been challenging, and I do not pretend to know what lies ahead, nor do I know how my story will end, but I will try to live the rest of my life with as much dignity, humor, and grace as I can.

Friday, August 10, 2018

When You Come to a Fork in the Road

SPOILER ALERT: This has not been a fun week, so this is not a funny post!

Now that my latest surgery is nearly a month in the rear view mirror, I am beginning to wrap my head around all that has happened. This chapter has been daunting because I have been forced to experience epic life changes at warp speed. When I went to the ER a month ago, I knew that I wasn’t feeling good, but I didn’t anticipate surgery or a colostomy appliance or a new bout with cancer in my life’s lesson plans.

Usually, once I know the facts of a situation, I am pretty good at adapting to a the situation and figuring out what I have to do next. However, all of these changes have come so quickly that I am still processing it all. Having said that, I began this round of chemotherapy a few days ago, and even though this treatment doesn’t seem any better or worse than my last round, my spirits had descended to a new low, and I wondered if I had the emotional and physical wherewithal to contend with everything.

As many of you know, my 75th birthday was on August 7th. Since my mother always made a big deal about our birthdays, I have always loved celebrating my birthday. Because I was not feeling up to a big party, several of my friends stopped by, and we had some good laughs and some good conversation and some rhubarb pie. However,  knowing that I had chemo the next day and knowing that I did not have the strength to take the Bush Boys on our annual Cubs’ game this year was definitely not a good place for me. I am not usually a defeatist, but I was feeling as though life had kicked me to the curb way too many times.

Given the fact that my head was not in a good space did not help. Feeling borderline nauseated and having an accident with my colostomy bag before my chemo began did not help. Once we cleaned up the mess, the anti-nausea drugs began to kick in. While I still didn’t feel that great, I at least felt borderline functional. By the time the infusion was finished, we came home with a new boatload of drugs and instructions, and I felt overwhelmed.

The good news is that I finally had more energy and started to feel more like myself and ready to take on whatever lies ahead. Donna and I spent a lot of time setting up a chart for my pills and for my food intake so that I can make sense out of everything. When I have a plan, I can cope with most anything. While this plan is still going to take some tweaking, at the very least, my life feels a little more in control. Next week I will have more lab work done to see if this latest treatment is on the right track.

While none of this is going to be a walk in the park, I have so much for which to be thankful. I have Donna at my side to do all of the heavy lifting--both physically and emotionally--and I have family and friends who are supporting me in ways both large and small.

In the words of Yogi Berra: “When you come to a fork in the road, take it.”

Monday, July 16, 2018

I Didn't See That One Coming

I am usually pretty good at anticipating consequences, but  I definitely didn't see this coming.  In a previous blog, I was happy to report that my PET scan looked clean, and I was good to go. However, life often has a funny way of pulling the rug out from under us when we least expect it.  Despite the fact that my scan looked good, my abdominal area still continued to bother me.  Pretty much everything that I have eaten has made me feel queasy and less than great.  After visiting several of my docs and after I had taken several prescriptions, I was still not feeling much better.  Finally, on Thursday morning when I woke up, my stomach really hurt, and I was doubled over with stomach cramps. Even though I hate the idea of going to the Emergency Room, I was at a point where I didn't know what else to do.
                      Hi, ho, hi ho, it's off to the er we go.

Once we got to the hospital,  I had the usual rounds of tests, and still the docs and the techs could not figure out what the heck was going on. My first doc said that since there didn't seem to be anything that he could see, he thought it might be a good idea for me to spend the night in the hospital for observation--just in case.  So, I agreed.  Interestingly enough, by mid-afternoon, the hospitalist in charge came in and went over my charts again.  Then he casually said that he saw some evidence of cancer (in the stomach lining).  Well, now!  While I realize that cancer is the gift that keeps on giving, this was a gift that I hadn't expected.  That evening the head of the colorectal team came in, and after going over all of my options (such as they are), we decided that he would perform a colostomy and then send the nodes to pathology to find out what my next steps need to be.  Well, there you are.

Since I have a pretty good sized incision in my abdomen now, my most immediate task at hand is learning how to get out of bed with the grace of a beached whale.  On top of this, the new fangled beds at the hospital yell at me.  THE CARE TEAM IS COMING!  DO NOT GET OUT OF BED!  Geez, first it was Siri, then Alexa, and now hospital Hannah bossing me around.

So now my goals are to learn how to deal with my new circumstances of living with a colostomy bag.  I have heard that they come in many shapes and sizes and designs;  I am hoping to find a Cubs' design.  I also need to learn how to get in and of bed without pulling out my staples and screaming in pain.  The good news is that I have been to this rodeo before, so I pretty much know the chemo drill--even if it is slightly different this time.

Despite being served yet another crap sandwich, I have to admit that I am luckier than most people.  I have loving and supportive family and friends who have been doing much to help with my recovery.  I have a strong will, and I have lots of good reasons to keep putting one foot in front the other and keep on trucking.  

It's just another Manic Monday!

Thursday, June 28, 2018

If It's Not One Thing, It's Another. It's Always Something!

Lately, my life has been a “shit storm.” Our old dog Max Quigley was knocking at death’s door for nearly five weeks, and now he seems to have turned the corner and is back to his old diva self. We are considering renaming him Lazarus. During a rousing game of miniature golf with my grandsons, I lost my footing and fell in slow motion into a pile of faux boulders, and I did a pretty good job of wrenching my back. On top of that, much like Max Quigley, I have been experiencing some abdominal issues. A couple of weeks ago, my CA 125 (the blood work that acts as a cancer tumor marker) was elevated.

Since cancer is the gift that keeps on giving, I contacted my oncologist, and we decided that another PET scan was in order just to make sure that cancer schmantzer had not decided to come back with another of its greatest hits.

On Tuesday morning I had my scan, and as is per usual, I had to hurry up and wait until today to find out the results. Donna and I had prepared ourselves for the worst. If cancer had decided to rear its ugly head again, we knew the drill, so we were reasonably sure about what to expect. I wasn’t looking forward to it, but I was mentally arranging my calendar so that I could get all of the things done that needed to be done because I always need to have a plan.

The good news is that my doc said that my PET scan looked good.

While that was a huge relief,  I realize that there is still much left on my to do list. Given the soul crushing headlines in the news--the border debacle, the Supreme Court rulings against unions and Muslims, and the news of Justice Kennedy’s retirement--many of the human rights that have been so hard won are now in jeopardy. While those who hate politics do not want to hear about these issues and while others are applauding these moves, I am not, and I will not sit still and allow that which I know is wrong to happen without my speaking out.  I find the prospect of what may lie ahead to be frightening, but as a tax-paying, voting citizen, I know that it is part of my civic responsibility to stay awake, informed, and engaged. I know that I must do my part. I know that I do not have the luxury of looking away.

Even though my back is still killing me, I plan to get off my heating pad and go out and canvass for the candidates whose positions I support. I plan to support them with my time and with my dollars. I plan to continue having respectful conversations with people whose opinions differ from mine; however, I also plan to call BS when those people are spewing unsubstantiated talking points.

In short, I am back, and I plan to kick ass and take names.

     Credit for the above picture goes to Kurt Reigel: