Friday, December 28, 2018

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: 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.

Friday, December 21, 2018

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 lovewhich 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. 

Thursday, December 13, 2018

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

Thursday, December 6, 2018

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.

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."