Best Christmas Ever, Part 2

Season’s Greetings, all! Donna is helping to write and type this blog as my hands and fingers aren’t quite up for the job.

This was the best Christmas ever! So many wonderful events of the past weeks led up to this very special day. There was no way that cancer schmanzer was going to be a Grinch and ruin Christmas.

I was so glad I was discharged from the hospital and returned home under hospice care. I know how fortunate I am to be able to receive such excellent health care. Of course, this also made me realize just how our country’s health care system needs to be reworked, so all people can get the care they need regardless of income.

I was so happy to see our dogs, Max Quigley and MacGyver. Dog snuggles are an important part of life. I certainly missed them—I think the feeling was mutual.

Throughout these past few weeks and then again on Christmas Eve and Christmas Day, friends and family visited, called, FaceTimed, mailed cards, or messaged me. Life doesn’t get any better than that.

For years I have wanted a leg lamp, like the one in A Christmas Story. Well, my wish finally came true! I was lucky enough to win a MAJOR award: a leg lamp that came in a box marked FRAGILE! Thank you to my friends at Network for Public Education for this honor.

All of this leads me/us to Christmas Eve. I have always loved Christmas Eve services, but this year Sherlock and his new partner Watson (my catheter) made it impossible for us to attend church. So, we contacted our church to see if the services were live streamed. Rev’d. T.J. sent us the link for the site (audio only: http://page.streamerportal.com/2623 click on Show Archives then the Christmas Eve Mass service; it runs from 31:35-44:38).

We were getting pretty emotional listening to the music because of all the memories of the past Christmases. Rev’d. T.J.’s sermon was on the birth of Jesus and the three shepherds finding baby Jesus in a manger and how ridiculously simple and beautiful and perfect that story is—how that story can be our story, too.

Next thing we knew Rev’d T.J. began talking about driving to Parkview Hospital to visit a parishioner and their spouse who were facing a serious illness and the decisions that would ensue. Oh, my! He was talking about us! Here is what he said:

Last week I went to Parkview Hospital to visit a parishioner and their spouse. If I’m honest about my drive I wasn’t in the best frame of mind. The road 24 to Parkview is normally 20 minutes. This day it was 45. We had just met a couple of weeks previously to discuss the funeral plans for the spouse that was sick. When I read the email sent late in the evening asking me to come to the hospital, I just had that feeling I needed to go as soon as I could. So, when I walked in I expected a rather somber conversation. But as we sat there, they shared with me encounter after encounter that had happened these last few weeks where light and love had worked their way into the seams that are immensely difficult. I was able to hear the story of their decision to get married after being together for 25 years. And of the response of their former students who made it all a possibility. It was lovely and completely unexpected. In the midst of this conversation a social worker came in just to answer, to ask a few questions, but she overheard what we were saying when she came in and asked about the wedding. Well, the couple shared with the social worker the Journal Gazette article about the wedding. And as she read the article, she started to share the story of her two year old healthy daughter who was born weighing just one pound and spent the first few months of her life in that same hospital. So in a place of expected darkness, in a place of expected sadness, what I was left with was light and love and laughter. There in the oncology wing life and love and laughter were heard in the most unexpected of times.

He then proceeded to tie the stories together to show how in the most seemingly impossible, ridiculous situations: too dark for hope too ridiculous for faith—God speaks to us. In the most unforeseen places, God comes not in the perfect moment but the present moment.

His kind words humbled us, filled our hearts with gratitude, and lifted us up. There we were expecting an evening filled with sadness and tears, but it was quite the opposite. We both felt comfort and joy in his message. More importantly, we felt peace and calm. It was indeed the best Christmas ever!

As 2018 comes to a close, and the New Year approaches, share your stories with one another. The world needs more light in it right now. You don’t have to be a person of faith to do that. We are all a part of humanity. Live in the present moment.

“If we could read the secret history of our enemies, we should find in each man's life sorrow and suffering enough to disarm all hostility.”—Henry Wadsworth Longfellow



Best Christmas Ever, Part 2

Not only was this the best Christmas ever, but I was lucky enough to win a MAJOR award:  a leg lamp that came in a box marked FRAGILE!  Thank you to my friends at Network for Public
education for this honor!

On a more serious note, I have always loved Christmas Eve services, but this year Sherlock and his partner Watson (a catheter) made it impossible for us to attend church. So, we contacted our church to see if the services were lived streamed (there is a an audio stream of it (     ). We were getting pretty emotional listening to the music because of all the memories of Christmases past. As we listened to the start of the sermon...................        he was talking about US! We were speechless! When we listened to the homily about Baby Jesus, when much to our surprise, he was talking about us!       His words humbled us and moved us and filled us with gratitude. In fact, we listened to the later service to make sure we hadn't just made it up. Being talked about in a Christmas Eve service, wow!       Our hearts filled with gratitude. While we don't know how or when this story will end, we will do our best to bring light and love and laughter and life into the darkness.

The Best Christmas Ever

For those of you who don’t know, I have been in the hospital since Tuesday.   As a bit of background, while being in the hospital is not my favorite thing, I am determined to get home today so that Donna (aka Minion Spice), my family, and friends can enjoy whatever time we have together.

In QBG (Queen Bitch Goddess)/BFD world, we laugh a lot, and we pretty much live a life of live and let live…..and that is the way we like it.  Our world is surrounded by love and joy and periodic pissment, but that is okay.  A little righteous indignation never hurt anyone, especially when injustice or hypocrisy is involved.

Throughout my whole cancer schmantzer odyssey and especially during the past two weeks, I have felt surrounded by love and affection, especially during the Christmas season.  My worst nightmare is to leave my family, my friends, my world  dreading Christmas and the holidays because of me.  The holidays are my favorite time because that is a time when we can all go crazy, trying to show each other how much we love one another.  Unfortunately, we often make it more difficult than we need to because we have to get the newest, latest greatest thing, whatever that may be.  The curious thing is that is it all so simple.  You just have to smile, be a smart ass if that is your thing, and that happens to be my thing, ask people what they are thinking, and then just listen.  Not really rocket science, but we often find it hard to be our real selves when we are trying to impress others.  

To paraphrase Wordsworth, it is the little nameless unremembered  acts of kindness and love—which comprise a good person’s life. Sometimes it takes a lot of work to make things look easy. 

While my prognosis is not that great, my expiration  date is closer than I would like.  However,  I do not plan to go gently into to that good night.  

For I have loved the stars too dearly to be fearful of the night….and I hope that the love and joy and kindness which surrounds me will make the holidays a place filled with joys and happy memories for everyone I love. 

When the Universe Speaks

The Story Continues….

This is going to be a long post. If you are interested in reading it, please do so. Depending on when you read this, you might need an extra cup of coffee. If you read it later, who knows what you might need—an adult beverage of your choice.

On Soul Mates
You probably have figured out by now that Donna Roof is my soul mate. We have been together for 25 years, and we have often talked about marriage. However, since there has been such antipathy and animosity and derisiveness towards folks who are different (aren’t we all in some way or another?), we always have lived our lives as Don’t Ask; Don’t Tell, and we just went about our lives. We also figured that since we were both teachers, we would let people draw their own conclusions. When Indiana made marriage available, we talked about getting married, but didn't, and just simply went on about our lives without sharing our story.

On Getting Married
On Sunday night I sent private messages to Andrea Trevino and Tim Manges, both of my former students, both attorneys and one a judge—to ask what we needed to do to make a marriage happen as soon as possible.

Both of them sprang into action to find out. As soon as we found out what we needed to do, we filled out the online applications. Since Andrea (Judge) had a short window of opportunity on Tuesday (December 11th) at lunch, we decided we would go for that. Since this was a spur of the moment decision, we wanted to keep all of this on the down low until we contacted our families so they could know before everything went into the public record.

On Tripping and Falling and Getting a Black Eye
On Monday I was feeling short of breath and incredibly tired, but we decided we were going to go ahead with everything. As fate would have it, I was getting up to go to the kitchen, and my foot got caught on either my slipper or my blanket, and I tripped and fell face first into the tv, busted my new glasses, cut my eye lid, and landed on my face. I yelled for Donna, and we headed for the ER because we wanted to make sure that I did not have a brain bleed or something worse. After about 3 hours at Parkview Randallia, I was released….no biggie except for a huge black eye…..and a hunger for a smoothie. Even though I have never been been to Smoothie King, at 9:00 at night, I was determined (even though I didn’t know whether they were opened or what they served) to have a smoothie with protein powder. The smoothie was what I needed because after drinking it, I had some energy for the first time in months, and I finally felt something like my old self for the first time in as long as I can remember. Apparently, my steady diet of bland food had left my system completely depleted of what I needed.

Donna kept asking me if I still wanted to go through with the wedding, and, of course, I said yes. I had a black eye, but what the heck?

The Universe Surprises Us
On to Tuesday morning—my eye was a mess, but I was feeling pretty good. The protein smoothie was what I had needed, so I decided I would have another one at some point this day. Then we headed down to the Court House. Surprisingly, when we saw some old SSHS colleagues and friends in the lobby, we figured something was up. Everyone at the Court House was extremely kind. They got me a wheel chair, and we headed up to one of the beautiful courtrooms. We were escorted where to go, and much to my surprise, through the main door in came a bunch of former colleagues and former students. Come to find out, our South Side Family had started a Facebook thread late Monday night in an effort to invite them to attend the ceremony. What an act of love!

Donna and I were both choked up and blown away that some had come at the last minute. Some had driven up from Indy and others had taken off work. Some who couldn’t make it sent videos or emails or whatever to let us know they wanted to be there, but circumstances didn’t work. I am not very good at estimating numbers of people, but my guess is that 40 people showed up spontaneously.

To make a long story longer….
The ceremony was short, sweet, and authentic, and the room was filled with so much love and positive energy that my heart was full and the day ended up perfectly. I was pretty tired and out of breath, but it was one of the most beautiful days I have ever experienced. Who would have thought that anyone could have a mini flash mob wedding at the Court House?

The Honeymoon
One of the reasons that we wanted to get this done so quickly was because I had chemo scheduled for Wednesday, and I knew that I would be more useless than usual because chemo is pretty much long and boring and uneventful. So yesterday we spent our day at PRMC Cancer Unit…and of course, since Sherlock always needs to be involved, I had an embarrassing bag leak disaster, and I was beyond exhaustion.

On Labels
Interestingly enough, I hate labels. A few people asked me when did I know that I was gay. Gay is just a word, and I have never been attracted to people because of their gender. I might be curious about their bearing or their looks or whatever, but I have never given a rat’s ass about their gender. I am attracted by someone’s smile or their laugh or their general kindness or decency.  I am more concerned about whether you wash your hands when you go to the bathroom than what is inside your pants...also, I am concerned whether you know which way to hang the toilet paper....the paper must go over not under.

When the judge pronounced us wife and wife, I got to thinking about labels. Since I hate most marriage labels (husband, wife, partner, whatever), as much as I hate the word spouse, that one is closest to what we are…..but as a couple, I would much rather think of us as Spice. Thus, instead of Donna being my spouse, she is my Spice, and we are Spice Girls. It works for me.

I have not planned to send Christmas cards this year, but I wish you all a wonderful Christmas or whatever you celebrate. For those of you who have sent Facebook messages or calls or videos, thank you from the bottom  of our hearts.

                                                       WE LOVE YOU ALL!  

                                                             The Spice Girls

Looking for a Grand Slam at the Bottom of the 9th!

Some of you who follow this blog may wonder what has been happening in my life.
The reason that I have not written is because since I wrote my previous blog cancer schmantzer has delivered a bunch of not so pleasant gut punches that I am still trying to figure out. More pointedly, the month of November seemed like one long, kick in the pants. On November 1st, I ended up in the hospital with a bowel blockage, and then later in the month I spent another week in the hospital with another one. Apparently, a tumor has been causing the blockages.

My care team decided to resolve the issue conservatively because that seemed the
safest option. While being hooked up to PICC lines and IVs is not my idea of a good time,
if my docs thought that was my best option, then I was all in. Since I like to be pro-active,
I asked if they could move my next chemo appointment sooner to shrink the tumor
(if possible) rather than to wait for my next trip to the ER. Whether this will work or not is largely
dependent on whether I can gain some of the weight that I lost while being hospitalized, and part
is dependent on whether we can keep the tumor at bay.

Trying to sort out what all of this means has been mind-boggling at best. My docs are looking
at all of my options to find the best treatment. My palliative care team is talking me through options so that if those treatments don’t work, my end of life care will consist of my choices about what is acceptable and what isn't.  The week before Thanksgiving, Donna and I spoke with our rector, and he gave us a road map of what my next steps are. Thus, I have been spending a lot of time making end of life decisions, and I have enlisted my family and friends to help me do some of the research so that I can make the best decisions. While this has been emotionally draining and exhausting, the good news is that if I make a miraculous recovery, that would be great. If not, all of this will be done, and I won't have left Donna and David with the burden of making these decisions.

With Donna at the NPE Conference in Indy in October

With David on Mothers' Day

I have always been more than a little introspective, but this has caused me to be even more so. During a discussion with a friend, I remember telling her about the last time that I saw my mother before she died. As my mom and I sat and talked, I asked her if she had any regrets. Even though I knew that she had had her share of heartaches, she simply said this: “No, I have had a good life.”

Remembering her words, for a moment I lost my usual stoicism because I realized that, like her, I have had a good life. That does not mean that I have had a life without heartache and pain, but those things pale in comparison to all of the great stuff that has happened in my life. I have had the privilege of having an amazing family and amazing friends. I have had the privilege of standing up for what I believe. I have lived, loved, laughed, and followed my bliss. What more could I ask?

On my mom’s birthday several months after her death, I decided that David and I needed to commemorate this milestone day. I bought a pink and silver mylar balloon, and we wrote something pithy on it, and along with my friend Judith, we decided to launch the balloon with a few words and a prayer.

When we went out into the front yard, there were too many trees, so we decided that we would go over to the baseball field by the neighborhood middle school, say a few words, and then launch the balloon. So we did. Much to my dismay, as we launched the balloon, it rocketed into the air at warp speed, and then the balloon disappeared. Of course, I was disappointed at this EPIC FAIL!

As we were getting ready to leave the field, we looked up into the clouds overhead, and we saw the reflection of the sun on the balloon, which was blinking brightly like a beacon....and I knew that was my mom, in her own way, telling me everything would be okay....and I knew that it would be.

As I think about those whom I love, I want them to know that everything will be okay. I may not be present physically, but I will be nudging you to do better, to be better, to be kind, to be joyful, and to laugh at yourself and the world around you.

Despite all of the crap sandwiches we get served in this life, this is a wonderful world, and we need to be mindful of our part in making it so.

For those of you who are neither Cubs’ nor baseball fans, I am including this picture of rookie David Bote’s walk off grand slam in the bottom of the 9th during the playoffs. While a grand slam may not be in my playbook, I am hoping for the best but preparing for whatever lies ahead.

Whether it is taking a kid to the zoo or to Zesto for ice cream, whether it is writing a letter to your legislators, whether it is running for office, whether it is supporting your favorite charity, DO IT!
Monday morning quarterbacks are of little use to anyone.
Whatever you do, live your life to the fullest. Once again, do what matters to you.

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.

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."

https://www.youtube.com/watch?v=CWzrABouyeE

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."

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.

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.”

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!

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:  https://www.facebook.com/kurtriegel

Archers Got the Power and Other Things

During these dark days when it seems as though reason and civility and kindness have completely disappeared from the planet, I have been heartened at the empathy expressed by many former Archers. Just like any "family," we don't always agree all of the time...and yet, even those with whom I disagree generally express their opinions respectfully.

What I loved about South Side was that we were a big, dysfunctional family. There were times when people made me crazy, and I wanted to smack them, but if anyone said anything about South Side or the people therein, I was ready "to go all South Side" on them. Such is the nature of families. Perhaps there is a lesson to be learned. We do not have to agree with others to care about their well being.

All of this reminds me of some favorite lines:

Within the circularity of it all,

the cosmic riddle of life and death and life again,

Each swan is always a swan with all its beauty and grace.

No frog would induce a jay to live its way.

Perhaps, therein lies the secret to peaceful coexistence.

-Author Unknown

Cancer Schmantzer: The Next Chapter

I wrote my first blog one year ago today. For those who have not committed this ground breaking, earth-shaking blogpost to memory, here are the first two paragraphs:

      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, April 7th, 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.

Cancer Schmantzer! Here is where I am today. I had my 3 month PET scan exactly a month ago, and the results showed that the chemo has held my cancer at bay--or at least until my next PET scan this summer.

While I am still the same person that I was when I started this unplanned adventure, I have learned a lot during the past year and a half. Despite the fact that there is still a cancer in the body politic, most of those who populate my world are good and kind and thoughtful. People (both friends and those I hardly know) have said and written lovely things. I have been blown away by the unexpected gestures of thoughtfulness that have been shown to me.

While carpe diem (seize the day) is a common theme throughout literature, rather than teaching that theme, I am trying to live it. Last July we took my grandsons to see a Cubs’ game, and as they went down close to the field to watch the teams warm up and as they walked away from me, I remember thinking that that might be the last time I would ever go to a Cubs’ game with them, and I was filled with sadness. However, now that I have a reprieve (at least for awhile), I realize that tomorrow is promised to no one. I plan to make the most of whatever time I have left on this planet. If I want to do something, I will find a way to do it. If I want to go somewhere, I will find a way to make that happen. If someone or something makes me crazy, I know that I can choose to walk away.

I often become impatient with people who whine and complain and do nothing to change their situation. However, I have lived the past 74 (nearly 75) years on my own terms, and I will continue to do so. I will continue to speak and write about issues that are of concern to me. I will continue to canvass for candidates in whom I believe. I will continue to open my home and my heart to those I love and care about.

In the words of Woody Allen, “Eighty percent of life is showing up.”
...and that is my plan. I will continue to show up.

On PET Scans and Other Things

Last Monday I had a three month follow up exam with my oncologist to get the results of my PET scan; the purpose of the scan is to find out whether the chemo treatments had worked. My stomach had been in knots since I had the scan the Thursday before, and I am happy to report that my doc said that everything looks good. My first reaction was “Are you sure?” He said, “Yes,” to which I replied, “I love you.”

Before I left Parkview, I stopped by the infusion lab to tell some of the oncology nurses the good news. While I was glad to let them know, I was aware that there are a lot of patients in that infusion area who were not going to be getting good news any time soon, so I made a point of keeping my happiness restrained.

While some people think that cancer, especially Stage 4, is a death sentence, in many cases, cancer is considered to be a chronic disease. Whether or not it is chronic, a person with cancer is never out of the woods. The good news is that I now have a reprieve. I will go back for a check up in June and another PET scan later this summer, but for now, all is good.

Right now I am flooded by emotions that I am still trying to process. I dodged the bullet this time. No chemo--at least for now. I am hoping that my next PET scan will be positive as well, but I also am realistic enough to know that cancer can rear its ugly head any time it damn well wants to.

I thought that I would have been doing happy dances all week, but oddly enough, I haven't been. While I never made a plan to use stoicism as a strategy, my m.o. has been simply to put one foot in front of the other, to deal with whatever happened when it happened, and to try to not get ahead of myself by anticipating outcomes. Apparently, having the sword of Damocles hanging over my head for all of that time must have taken its toll because I have been exhausted all week. Last week’s drama with Max Quigley, the firefighters, EMS, and my Women of Grace speech did not help quash my exhaustion level.  (https://qbg1.blogspot.com/2018/03/my-women-of-grace-speech.html)

So, what have I learned from my odyssey through cancer world?

The first thing that comes to mind is patience. I am not by nature a patient person, and cancer doesn’t give a care whether you are a Type A person or obsessive-compulsive or anal-retentive. Stuff is just going to happen when it happens, and I have gotten pretty good at learning how to hurry up and wait.

Another thing that I have learned is that the folks who work in oncology are incredibly smart and incredibly kind.

As a person who always has liked to get things done yesterday and who likes to do most things myself, I have found that as I have needed help, my friends and family have stepped up to the plate and have been incredibly supportive and caring. Having a friend and caregiver like Donna Roof has been a gift that I can never repay, especially since she puts up with me when I am not being very put-up-withable. I am also grateful for all of the former students who have shown up in my life. Whether they sent flowers or brought dinner or sent lovely cards and notes, I am extremely grateful.

Sadly, I no longer have an excuse to use the handicapped carts at the grocery store because I had a lot of fun zipping around Kroger. However, I may find it necessary to break a rule or two and zip around the grocery store for old time’s sake.  Who’s going to know? Better yet, who’s going to stop me?

Of all of the life lessons that I have learned is that I have been given a second chance. If there are places to go or things to do that are on my radar, then I will do them.

If there are people or things that I don’t want to deal with, then I won’t. Life is too short to deal with unnecessary and irrelevant stuff.

If there are things that need to be said to the people that I love, I will say them.

For those of you who have been following my cancer-schmantzer odyssey for the past year, I really appreciate all of your kind words and support. Thank you!

My Women of Grace Speech

Good afternoon!
To some of you I am a retired South Side HS English teacher.

To some of you I am a friend.

To some of you I am public school advocate and a member of the Northeast Indiana Friends of Public Education and of the Network for Public Education.
Some of you know me as a middle school mean girl.

                               To my grandsons, I am a LEGENDARY SLAM GRAM!

Some of you know me as the person who writes about my experiences in dealing with my odyssey through cancer world in my blog, and that is probably why I was invited to speak today.

However, what exactly is a woman of grace and why was I chosen to tell my story? To me, being a woman of grace means being a person with inner strength.

As I look around this room, there are so many accomplished people, so many women of grace.

When I asked Diana what she wanted me to say today, she simply said, Tell us your story. So let’s start at the very beginning.

I have always wanted to start a story with that, but never mind.
I have no idea whether I was born on a dark and stormy night, but I was born in Fort Dodge, Iowa, a small town in northwest Iowa which was a town much like Pleasantville.

The difference between my family and those from Pleasantville was that all four of my grandparents were from Syria/Lebanon. While I loved growing up in an idyllic, perfect world, mostly made of Nordic looking folks, it was clear from the very beginning that I was not Nordic.

I was the baby of the family.  For some reason, everyone in the family always told me that I was smart, so I believed them. I loved school, and I loved my teachers—and I learned how to please them. I learned also to get attention by making people laugh and by making people feel at ease.  All in all, my childhood was pretty good. Even though our family was not very demonstrative, I always knew that I was loved. No matter what activity I was in, I always knew that I could look out into the audience and see my mom grinning from ear to ear
She taught me that showing up is a way of showing love.

By the time I had graduated from high school, I really wanted to go to the University of Iowa. However, since my brother and sister had both gone to our community college during their freshman year, my parents thought it was only fair that I do the same.  Being fair in that case was probably one of the worst parenting decisions ever because I spent that entire year making all of us miserable. However, after that horrid year, I came to one of the most important realizations of my life. I vowed that feeling sorry for myself was something that I would never do again.  It was counter-productive and waste of time, and even now, I rarely choose to wallow in my own misery.

That was an important milestone in my life because I realized that I had choices about how I would deal with life’s speed-bumps.

During the summer that I was a camp counselor at Camp Foster at Lake Okoboji in northern Iowa, I realized that I really enjoyed working with kids, and that was yet another milestone in my life because it was there that I realized that I might be actually enjoy being a teacher. I always knew that I wanted to make a difference.

When I first began teaching, I saw myself as Holden Caulfield, catching kids before they fall over the edge.

Among the things I have learned as a teacher are that it is important to know your subject, know and respect your kids, to be fair, to admit when you are wrong, and to have a sense of humor.

One of the really cool things about teaching English is that all of the answers to the universe are found in literature. Just for the heck of it, here are two of the favorite quotes:

I taught school for 32 years, and I have learned as much as I have taught. Years ago when I retired, I thought that I would lead a life filled reading books, walking my dogs, and eating whenever I felt the need rather than when the clock told me it was time…and thus it was until 2011 when the education reformers began their odious plans for reforming our schools.

I was only vaguely interested until I went to a town hall meeting in Columbia City and listened to a senator who had recently been appointed to the Senate Education Committee With her was spokesperson for Superintendent Tony Bennett and the Department of Education. As I listened to the nonsense and half truths coming from the mouth of the DOE person for two hours, I was incensed, and I had my first Norma Rae moment.  I stood up and cut loose on the young man from the DOE.

I had never planned to be an activist, but I was so annoyed at the disrespect he was showing teachers that I felt that I needed to speak up, and as my friends can tell you, I have not shut up since.

In 2011, I went with friends to the Save Our Schools march in DC because I could feel in my bones that something was radically wrong, and I needed to see for myself if I was just paranoid or if something was happening. When we got to DC, it was apparent that I wasn’t the only person who felt that way.

When we returned to Fort Wayne, we invited a few of our friends for a cookout to talk about the March and to brainstorm where we would go next….and so began our grassroots group, Northeast Indiana Friends of Public Education.  When we started in 2011, our main goal was to change the dynamics in Indiana by getting Tony Bennett voted out, and we thought we would be finished when he was defeated. Little did we know that we would still be fighting for kids still today.

From our work here in Indiana, I was asked to be a founding member of NPE, working with people like Diane Ravitch, whom I have admired from afar for many years has been gratifying.                                                                                                                                                                                                                                                                                                                     

Fast forward to the fall of 2016 when I started feeling as though something was not quite right with me.  There was nothing painful, but what I felt was similar  to when you know something is wrong with your car, and you go take it into the repair shop and say, "I heard this noise."

Well, after gazillions of tests, after being poked and prodded and x-rayed and scanned and sliced and diced, I finally had a laparoscopic hysterectomy, and my first surgeon told me that I had ovarian cancer.

When I first realized that I had cancer, lots of folks told me to get a second opinion, and while I generally think 2nd opinions are a good idea, I couldn’t have gotten better care anywhere than what I have gotten at Parkview Oncology. Because many people who I know were concerned about my health and because I was beginning to feel like a cross between Chatty Cathy and the Ancient Mariner, telling my tale over and over and over again, I decided to write a blog about my adventures in cancer land.

After my surgery, I was referred to Dr. Podzielinski, who looked at my surgical report and told me that what I had wasn’t actually ovarian cancer, but was a signet cell carcinoma.

After one endoscopy and 3 colonoscopies and an absolute and visceral fear of anything that resembled Gatorade or Miralax, my docs still could not determine the origin of my cancer. After all of this, Dr. Ipod called me on a Sunday morning to talk. She was concerned that the 3 tumor boards had met to discuss my case, and they still couldn’t figure out the origin. So, I asked her what she would do if I were her mother, and she said that she would like to open me up and take a look around. So, she did.

While my surgeons were amazing, my recovery was slow and uncomfortable. After 6 weeks, I began my chemotherapy with Dr. Rob Manges, who just happened to be one of my former students. He had recently returned to Fort Wayne and had asked Dr. Ipod if he could work on my case. On that note, I want to give a shout out to Dr. Manges and my oncology team. They were all smart and caring and funny.

Here are a few factoids that you probably don’t know if you haven’t been on a cancer schmantzer odyssey. First come the side effects:

                                                     

1. The list of side effects of chemotherapy is almost as long as the unabridged Oxford dictionary. While I thought I would lose my hair, that didn’t happen, but after my surgery, I found that I had become lactose intolerant.

2. While I was still getting oxalaplatin infusions, I became very    sensitive to cold. When the temp got below 65 degrees, I had to bundle up like Nanook of the North when I went outside. I couldn't drink anything cold--which made me long for a Slurpee.     

 
3. My vision went to hell in a handbasket, and reading is still a strain for me. Additionally, my fingers and my feet are still numb from neuropathy.

     
       Other observations:

Cancer doesn’t care who you are, and it doesn’t change who you are either. If you were a nice person before, you will still be a nice person. If you were a jerk, you will still be a jerk.

Interestingly enough, people tell me they are in such awe of me because I have kept my sense of humor while I have been fighting my battle with cancer.

News flash: You don’t fight cancer. You learn to live with it….and that is what I am trying to do.

All of this reminds of what happened while we were in Key West in January, celebrating the end of my chemo.  On our last day there, we were sitting on the steps near the Customs House art museum. I was enjoying the morning sun while Donna was looking at her iPhone, in our quest to find the perfect Key Lime pie.  As I was sitting there,  a couple walked by and within a nanosecond after they had passed by, the street light in front of us unceremoniously fell a couple of feet behind them and a few feet in front of us—it was so loud and so scary that we nearly levitated.

As my son said when I told him, Lights out, cancer schmantzer.

If that pole had landed on us, we could have been dead, and he could have owned Key West.   

                                     


                                          The point of all of this is that life is random.

What cancer changes is your outlook, and I REFUSE TO BE DEFINED BY CANCER.

I had a PET scan yesterday to determine whether or not my treatment has been effective, and since I have no control over the outcome of this, I will just put one foot in front of the other and deal with whatever comes with as much grace and dignity as I can,

I do not know how my story will end, but I do know that I am not ready to bust out the dirges or to hang out the crepe yet because I have too much to do—as do we all.

1. I have two grandkids that I need to see grow up.

2. I need to continue my mission to get legislators to listen and to make the world a better place….so I will keep writing letters, I will keep going to the State House to testify, and I will continue to be a rat terrier who will not give up and who will not go away.









People have asked me if I have a bucket list; the answer is this. My whole life has been one long bucket list of things that need to be done.

Yes, life is random, but we do have choices, and I choose to live my life as I have always tried to do—with a sense of purpose, and I would urge you to do the same.

1. If there is an issue that you think is important, speak out about it.Whether you write a letter to the editor or you talk with your legislators, don’t just sit there and whine, do something. At the very least, get informed and vote.

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. Take a kid to a baseball game or the zoo or to Zesto.

4. Adopt a rescue dog or cat.

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

As a recovering English teacher, I usually have a quote for every occasion and an occasion for every quote—because literature is life.  As I said before, I do not know how my story will end, but I am reasonably sure that I will not go gently into that good night.

In closing, I would like to end with some lines from Ulysses by Alfred, Lord Tennyson.

Tho' much is taken, much abides; and tho'

We are not now that strength which in old days

Moved earth and heaven, that which we are, we are;

One equal temper of heroic hearts,

Made weak by time and fate, but strong in will

To strive, to seek, to find, and not to yield.

If you can open this Facebook link, here is my speech.
https://www.facebook.com/AnneKDuff/videos/10213889729611102/