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.”