Done

Fifty-two weeks ago this (Friday) night an oncology resident came into Brandon's hospital room and told it like it was. He remained severely acidotic in spite of the base fluid literally being poured into him.  The resident laid it on the line but said medications could make him more comfortable. Christina and I went from clueless to scared sh_tless. This could not be happening. This could not be real.

Brandon's breathing was so labored he could hardly speak. Yet he answered the resident, "Done."

"Brandon, do you understand what she (the resident) is saying?" I asked and quickly provided a user-friendly, Cliff Notes version. 

He looked up at me, his eyes meeting mine, and repeated, "Done."

"Your decision and a fair one to make," I said. Without breaking eye contact I nodded, giving the resident the go-ahead for some medicine to relax him and ease his breathing.

Christina sent a text update to one of Brandon's best friends, who called minutes later. Because he was weak and couldn't speak, Brandon did not want to get on the phone, but I told him he didn't have to talk and we would hold the phone to his ear so he didn't have to exert any energy.

Christina and I could hear his friend Steve (a happily married father of three) promising to watch over Christina and their baby daughter, Morgan. His sense of humor intact, Brandon replied, "You better not hit on my wife."

Tears and laughter. Laughter and tears. Fifty-two weeks and THE decision continues to scare me sh_tless. Fifty-two weeks later and there's no change in tears and laughter, laughter and tears.

Joey with his brother Brandon hours before THE decision

Cheated... Robbed...

A year ago my Brandon had less than a week left to live with us in this life, but we didn’t know it. We knew his health was getting worse. We knew cancer had a tighter grasp on his body. But we still had hope in another new chemotherapeutic drug trial, and we still thought he had months at the least – not days. Still. A scary symptom developed over that Memorial Day weekend.

My brother Jim (Brandon’s godfather), sister-in-law Betsy, and Lena their wonderdog were in town from Northern Virginia and staying with us for a long-planned Memorial Day weekend visit. Brandon always looked forward to their visits, and this time Jim and Betsy were to take Brandon and Christina to dinner that Saturday at a true Cincinnati spot – The Boathouse – when in the mood for ribs. When Jim saw how frail Brandon looked, he offered alternatives to dining out, but Brandon insisted he was all right and wanted to keep the couples’ date. From all reports the evening was a great success, even as all involved wondered and worried about Brandon’s health.

Brandon with Morgan at his friends' party on May 25, 2012  - two days pre-headshave

Sunday we were invited to stop by Christina’s parents’ home. When we arrived, Brandon was sitting in a chair in the back yard and Christina was shaving his head. Seems the radiation was finally resulting in hair loss. Rather than deal with a slow, erratic loss, he asked his wife to shave his head. Then he got a beer and went to sit on porch where he could watch his baby daughter with others in his parents-in-law’s pool. I’m not sure how long we all talked when he asked his dad and me to take a look at his feet. It was as if he’d dropped a bomb. His feet and legs were swollen to two or three times their usual size. I remember the sick, scared feeling that came over me. Joe and I exchanged a look. No words needed to be said.

Immediately post-headshave on May 27, 2012

I was to spend the day with Brandon and baby Morgan two days later. He no longer had the strength to care for her on his own while Christina worked, and I was to help him the Tuesday after Memorial Day. After Sunday’s visual bombshell, I wanted and needed that day with him and his daughter. I needed that time with him. But it wasn’t to be.

Several hours after Jim, Betsy and Lena headed home last Memorial Day, I was suddenly hit by a very unpleasant virus. I won’t subject anyone to a description of the symptoms, except to say I was afraid to leave the vicinity of bathroom facilities. There was no way I could care for a baby, and I certainly didn’t want to expose Brandon in his weakened condition, or my grandbaby, to it.

After the first 24 hours, the symptoms calmed but returned again off and on for the next few days. By the time I felt confident that the symptoms would not return, Brandon was in the hospital and he was not destined to leave it alive. I later learned Brandon was beginning to have trouble breathing by mid-week, and he could barely talk because talking competed with breathing. Yet at some point he called me to see how I was feeling. He was concerned about me when he could barely breathe.

iPhone self-portraits his last week

If I feel anger about anything, it is that we were cheated – we were robbed – of spending that Tuesday together. Just he, Morgan and I. What would we have discussed? What might have been said when he was still able to talk? How much more might I have been there for him that last week? Cheated and robbed of precious, precious time that can never be replaced. Never.  Not ever…

A Meditation While Walking the Sacred Spiral

May 19, 2012 my second baby was still in this world, but I had just learned his continued earthly existence was in mortal danger. My emotions that weekend may be best described as in total and utter turmoil. It is beyond my writing ability to convey the state of my entire being at this time last year. 

Cold rain would’ve suited my mood that Saturday. Instead, there was not a cloud in a beautiful blue sky, and the temperature was a pleasant 75° F (22° C). The day couldn’t have been more perfect for a visit to "my" labyrinth*, which lay in the newly dedicated SmalePark. As someone who’d walked labyrinths occasionally for several years, I'd been excited to discover this new one situated less than two miles from my home, making it a brisk walk or an easy bicycle ride across the Ohio River. 

That Saturday I chose to hop on my bicycle and pedal rather than walk. After crossing the Purple People Bridge, weaving along the Serpentine, and avoiding children playing in the new Smale fountain, I reached the labyrinth. I parked my bike in the shade, hung my helmet on the handlebars and approached the entry to the labyrinth. (The manner in which pavers and plants were used to create this labyrinth is so unique I am again including a photo.)

"My" labyrinth at Smale Park

As always I paused before entering the labyrinth and placed my hands together with palms touching. I then touched my index fingers to my forehead and my thumbs to my lips, seeking the Divine to help open my mind and gain enlightenment. “Be still,” I heard, “And know.” With my hands in front of me, palms facing downward in a gesture of release or letting go, I began to walk. At some point along the path toward the labyrinth’s center, I began to appeal to the Divine. My thoughts were churning. My emotions were raw. Tears rolled down my cheeks from eyes still covered by sunglasses.

“Please, God, no,” my mind cried out. “Please do not let my baby die.”

If you’re like me, your head has claimed repeatedly since each baby’s birth, “I would gladly give my life to save my baby/child,” but your heart has doubted if you could really do it. It has wondered if this proclamation was true or whether survival and fear of death was stronger than the love that would allow a parent to give her life for her baby/child. I learned that day on the labyrinth that it was true. There was no doubt. I felt no fear. I would gladly sacrifice my earthly existence if it meant one of my babies/adult children might live another day.

As I neared the center of the labyrinth, I begged, “Please don’t let my Brandon die. Please, please, dear God, take me. Please take me instead.” I kept walking forward, tears streaming down my cheeks. “I’ve had my life. He deserves his. Please let him stay to grow old with his Christina. Please let him stay so Morgan can know her daddy. Please, God, please take me.”

I reached the center and stepped inside. Slowly circling its outer circumference, I brought my hands together and stopped several times to look more closely, listen more acutely, and smell more intensely as I prayed for each of my children, but especially for Brandon that day. Finally, I tailor-sat on the stone in the center, absorbing its warmth, and lowered my head to my hands and wept.

When it felt as if I’d run out of tears, I began to walk back into and out of the labyrinth with hands again in front of me but now with palms facing upward to take in, although I had not yet truly let go. I continued to plead that I be allowed to die instead of Brandon.

“I don’t think I can do this,” I cried inside. “Please, I really don’t know how to do this. Don’t ask it of me. I can’t do it. Please take me.”  

Suddenly, I felt a line of heat slash across and through the palm of each of my upturned hands. It didn’t burn or feel painful. Rather it was an intense, localized sensation of warmth.

Simultaneously, a clear, calm voice – not the usual in-my-mind voice – said, “That is his cross. This is yours.” The tears fell again.

*Labyrinth Walking – Epilogue

Walking the labyrinth is both meditative and spiritual metaphor for me, but I don’t want to taint your experience of walking the labyrinth by going into detail of what this exercise has come to mean to me. Labyrinths are ancient constructs, dating back millennia. Many confuse a labyrinth with a maze, but the two have different connotations, at least they do in the English language. To paraphrase what was once said, “One enters a maze to lose one’s self but a labyrinth to find it.”

Whether invited or not, I’ve explained this difference between labyrinth and maze to numerous adults and older children in the past year when they’ve had the nerve to jump on and off “my” labyrinth while I was walking. (Sharing the labyrinth with other walkers is lovely, but it is sometimes difficult for me when others don’t recognize the space they’ve entered.) Invariably, one of these “intruders” asks another, “What is this thing?” And the other generally responds, “It’s a maze.”

If my meditative powers were stronger, I’d probably find it easy to ignore such interlopers and their uninformed notions about labyrinths. Sometimes I can, but too often the need (compulsion?) to teach completely sidetracks my labyrinth walk. I feel sure that being unaware of others while walking is one of the lessons I’m to learn on the labyrinth!

I’ve had people ask how to walk the labyrinth, and the answer is easy. Follow the path in and out, and do what feels right. Walk (frontward or backward) when the spirit moves, run or dance if the spirit moves, and stop if/when the spirit moves. There is no “right” way to walk a labyrinth except, perhaps, to walk it in its entirety. If you choose to walk, commit to walking to the center and back out again to the end without crossing any lines. The pace and when to pause should come from within.

There are no particular rituals and it isn’t necessary to turn palms down when entering or up when in the center or returning. I’m usually not one for outward gestures, yet using my hands during labyrinth walking seems natural and helps me focus. I must’ve read an article or two about labyrinth walking when I first started and the hand gestures “fit” for me!

I now check the WorldwideLabyrinth Locater when I travel. It has led me to labyrinths in spots where I’d never have imagined a labyrinth to be and allowed me to walk different designs or variations on familiar designs. My walks on nearby labyrinths and those in other locales have ranged from the amazing to the mundane, but all have touched on the spiritual for me.  Consider giving it a try or two. You may find labyrinth walking allows you, as it does me, to “pray as I can.”

“First: pray as you can, and don’t try to pray as you can’t.” John Chapman, Spiritual Letters, 25. 

A Month to Twelve Months... The Pivotal Day

May 17 has always held special importance for me. It is my mother's birthday. (Today she celebrates 84 years on this planet!) Last year, 2012, May 17 took on a new significance. It is the day Brandon, the second of my five "babies," the second of five amazing adult children -- none of whom I could imagine my life without -- told me he was dying. It is the day my head was forced to wrap itself around what my heart was already forcing me to acknowledge. 

One year ago my baby was still in this world. One year ago today he and I planned to meet for a noon matinee of The Hunger Games. Brandon had read the book but hadn't yet seen the movie when it was first released several weeks earlier, because he'd been immersed in testing for and then being involved in a trial to treat his cancer with a Trojan horse-like drug. Although I'd seen the movie when it first came out, I jumped at the chance to share it with him. 

I had to work that morning, so I offered to pick him up afterward for an afternoon showtime. No, he said he felt fine and wanted to drive. He'd meet me at the theater. I bought the tickets and he bought the popcorn. He ate only a few kernels and told me to eat the rest. I watched the movie and listened to him cough. Worried. I was so worried. He was coughing more and more, and becoming thinner and thinner.

We discussed the movie on the way to our cars, and I asked if he'd like me to get Morgan at the sitter's so he could have some extra time with her that afternoon. (He now needed help to  lift and care for her if for more than a brief period.) He asked me to let him think about it, but he did want me to stop by first if I had time to talk. Time? Of course, I had time if he wanted to talk. I had an errand to run and then I'd follow him to his place. 

My errand was to Half Price books. I sought a copy of Lessons from the School of Suffering: A Young Priest With Cancer Teaches Us How to Live by Reverend Jim Willig and Tammy Bundy. I'd read this book years ago as a book club assignment, but I'd recently downloaded and begun rereading an electronic version on my Kindle. I thought it might help me understand, if even a little, what Brandon was going through. The book is an honest and faith-filled account of a very human priest, who is grappling with the physical and emotional ramifications of cancer as a disease but also with the aftermath of its treatments, including extensive surgeries, chemotherapy and radiation. I thought Brandon or Christina might find some value in it. Several copies lined a shelf in the self-help niche, and I bought them all.

Book in hand, I arrived at Brandon's and joined him in their family room. The TV was on and turned to some crazy reality show he occasionally watched. (Brandon introduced me to Moonshiners last year; one episode was enough for me.) His bloodhound Otis was, as usual, at his side. At first we talked about nothing and everything.Then he said he'd recently seen the new director of head and neck oncology and asked him to be honest with him about his prognosis. 

"You went alone?" I asked. Usually his wife, and his dad and/or I went with him. When I'd questioned in the past whether he wanted us to go to such appointments with him, he'd said he liked one or both of us to go. We understood "medicalese," plus "they always tell me something that knocks me for a loop, and I don't remember a thing they say afterward. You or Dad remember and translate for me later." So it came as a surprise that he went to this appointment without any of his support team. 

"Yeah, Mom," he said, "I wanted to know." I had a sense he was digging in, seeking the courage to share the doctor's words.

"What did he say?" I asked, not really wanting to hear the answer.

"He said that unless something changes I probably have anywhere from a month to 12 months, but he also said he's still getting Christmas cards from patients 10 years out."

No, no, no, no, no! My mind was shouting. My mind was crying out. No, no no, no, no. This couldn't be. No, no, no, no, no. Not my beloved baby, this wonderful man. A month? No, no, no, no. That simply wasn't possible. I must've heard wrong. And a lot could happen before 12 months, couldn't it? He was to participate in a different drug trial. We'd contacted Stanford University about another trial. There were still options left.

My heart was in complete turmoil while my head tried to stay cool and calm. It's one thing to have an unacknowledged "knowing," and quite another to have it validated. 

I remembered getting up, going over to him, hugging him as if both of our lives depended on it and, maybe, they did. I said something to the effect of, "Brandon, I'm here, your dad is here, for you, no matter what. I will stay with you no matter where this journey takes you. I love you." And we hugged again. 

I don't know if I said the wrong thing or if he was afraid he'd break down if he said one more word, but he transitioned to an entirely different topic. He switched conversational gears as if he'd never dropped the bomb of what the oncologist had told him. I took my cue from him and let it go, figuring we'd have other times to talk, that I'd have other chances to get it right. 

What a difference a year makes. He said he'd had a month to 12 months. He barely had two more weeks with us, and here I sit a year later, tears trickling down my cheeks, with the memory of May 17, 2012 seared on my soul. The enjoyment of sharing a movie with a beloved adult son is juxtaposed with the revelation that there may be precious little new memory making in our mother-son future. Yet I feel blessed he shared his revelation with me.

“You Know Mother’s Day Is My Thing”

I made it through Mother’s Day, but I had to leave town to do so. This is because from the late 1990s through last year, Mother’s Day almost always has meant dinner by Brandon. It began when he and his friend Steve rented a house together not long after their college graduations. Together they decided to create a special Mother’s Day dinner for Steve’s mother and me, and this annual feast became a tradition. Other family members – mothers and otherwise – were welcome, so there was usually a good crowd and the crowd always included Brandon’s Golden Retriever, Lex, and Steve’s White Shepherd, Rommel, two of the gentlest giants ever.

That first Mother’s Day feast centered on their amazing fish tacos and some other dishes that weren’t quite ready to serve with the main course as they'd planned. Although our gracious chefs learned timing after several years of Mother’s Day dinners, taste was never an issue. I cannot think of even one dish that did not meet the “delicious” standard. They experimented and often introduced us to a food none had ever tried before or to a medley of flavors that may have been good individually but were divine together.

The taste experience that represents these Mother’s Day meal memories for me is Brandon’s tuna tartare. It was one of his “early” years’ concoctions, and I reluctantly tried this raw tuna appetizer. “But Mom,” he said, “It’s sushi-grade Ahi. Trust me. You’ll love it!” And love it I did. It became THE annual special request. Whatever else may be on the menu was left to our chefs, except for Brandon’s tuna tartare appetizer. It remained my special request year after year.

Life changes and so do traditions. Young men in their mid- to late-twenties marry or take jobs that lead to change. Still, Brandon cooked on Mother’s Day when he was free. And still, I requested his tuna tartare for any Mother’s Day when he served as chef!

Last year, 2012, was no different. Brandon had big plans for Mother’s Day dinner, since it would be his wife Christina’s first Mother’s Day. As usual, my one request was for his tuna tartare. However, as he became noticeably sicker, I suggested toning down the feast. It would be enough for all of us to be together, especially once we learned his brothers were coming for the weekend from out of town (New Jersey and Illinois). I suggested throwing a salad together while his dad grilled burgers and brats, but that was not good enough for Brandon.

“Mom, you know Mother’s Day is my thing,” he replied. “I’ll be fine.”

He turned down a Mother’s Day matinee of The Avengers, which his brothers were taking me to see, so he’d have enough energy to prepare the dinner. The dinner party that evening was comprised of his two sisters and two brothers, a couple of his sibs-in-law, his grandparents (my parents), a brother-in-law’s parents, and his nephew Konrad and nieces Karenna and Alice, in addition to Christina, his baby daughter Morgan, his dad and myself. What a grand celebration it was!

Brandon preparing his Tuna Tartare on Mother's Day 2012

When it came to the kitchen, Brandon did nothing half way. He went all out. I savored his tuna tartare last Mother's Day. Not only was the taste exquisite, but I knew in my heart (if not my head) I might never experience his version again. Later that evening we all exclaimed over the rack of lamb, and the sublime sauce he’d created to accompany it, but I think we were mostly exclaiming over his determination to create a special Mother's Day that none of us will ever forget.

I scoured the Internet for a tuna tartare recipe to include with this blog. None of the recipes I found could compare with Brandon’s version. His recipe combined minced Ahi tuna with some lemon juice, and I think capers were involved somehow. There were spices that drew out the flavor of the tuna. The tuna mix was spooned over roasted baguette slices and garnished with crisp curls of something or other, which provided a bit of crunch and coolness. Perhaps he has the recipe written down, but I’m not sure how helpful it would be. One of the joys of watching Brandon cook was in observing the innovation. As with most really good cooks, nothing was ever quite the same twice.

There was no tuna tartare this Mother’s Day 2013. It was not a year of old traditions nor was it a year for beginning new ones. This Mother’s Day’s round of activities is not one to be repeated year after year. However, it diverted my attention to the lack of Brandon and to the lack of his special tuna tartare appetizer, which epitomizes for me Mother's Day as "his thing." It was exactly what I needed to do, where I needed to be, and who I needed to be with this year. Whatever comes next, comes next and must take care of itself. 

But All I Got Is a Photograph

One year ago my baby was still in this world. One year ago today (by date but it was a Thursday) I was picking up the phone and calling Brandon to tell him I'd finally had an idea for a special gift he could give his wife Christina for her first Mother's Day. He'd asked me for ideas two days earlier when I'd taken him to outpatient radiology for a cranial MRI, which I wrote about in the last installment of this blog. I'd been watching my baby boy's body deteriorate in front of my eyes for several weeks and, unless a new treatment was tried soon and it worked, something in me knew he couldn't be here for Christina's second Mother's Day. 

Still, the heart often cannot accept what the mind knows, and it really didn't occur to me that a successful treatment wouldn't be found or that his wife, his daughter, his sisters and brothers, his dad and I, his friends had only three more weeks with him. I don't think Brandon's heart had yet accepted what I'm fairly sure his mind was beginning to grasp.  He dropped "hints" that said he had a good idea of where his cancer was taking him, yet he also talked about how much he was looking forward to a mid-June vacation to Hilton Head with Christina's family (and, as I later found out, a parasailing adventure that would let him relive feelings he associated with skydiving), beating cancer's ass after initiating an upcoming drug trial, getting strong enough to go back to work, adding to their family some day, etc. 

Hope is not something to mess with. Ever. Brandon still felt hope; we all still felt hope. And all the while we also knew what we didn't want to know. So introducing the gift idea I'd come up with for him to give Christina for her first Mother's Day was "tricky" - tricky because we all knew but we didn't. This was a conversation in layers. There was the "what was said" layer. There was the unsaid layer, which was tiered with hope and fear. There was the pragmatic layer that gnawed at me and had not stopped since I'd the gift idea had come to me, "If not now, when?"

"Brandon," I said, "I've come up with an idea of something special you can give Christina for Mother's Day. If it was me, I'd most want family photos. I really think she'd like that more than anything.

"Mom," he said, sounding so very tired, "Mother's Day is only three days away. I can't get that together by Sunday."

"But do you think Christina would like it? I think she'd like photos now, because your hair is back in and it looks really nice. With the radiation, it's probably going to be gone again soon, and who knows how long it might be before it's back again." (The radiation was to treat some new "hot spots" that had developed in his brain. I hate that euphemistic term "hot spots" when what the doctors mean is the word "tumors" or "metastases.")

"Yeah, Mom, it's a good idea, but it just can't be pulled off that quickly."

"Leave that part to me, Brandon. I'm going to make a few calls and I'll get back with you as soon as I can."

After a quick prayer I got back on the phone, leaving messages with my friend Anne to get a direct contact number for her daughter Jenny, the owner and photographer of Fresh View Studio. Of course, I'd already left a voicemail message at the studio's business number and I'd filled in and sent the form on  the Contact page at her web site. 

Jenny quickly answered my prayer and listened to my tearful request. Although she was busy with business and preparing for her Memorial Day weekend wedding, she never hesitated. She quickly said yes. (There are no words for how grateful I felt then and how grateful I still feel for her "Yes!" that afternoon.) She had a couple of commitments during Mother's Day weekend, but if she and Brandon could figure out a time that worked for everyone, she was "happy to help." 

The bro-men - twins Tony & Joey on either side of older bro Brandon

After a couple of glitches, and there are always glitches with this family, of one time being set that then had to be reset, she and Brandon settled on a bit before noon Saturday, May 12, for his family's photo shoot. In a really nice glitch, both of his out-of-town brothers (one from New Jersey and one from outside Chicago) made last-minute plans to come in for the weekend, so now I was calling Jenny again to see if it might be possible to also take few photos of our family. Additional glitches with son Tony's flight from New Jersey almost put a halt to the secondary family photo shoot, but he landed and we went straight to the park to join the rest of the family for "our" photos. (The photos of "our" shoot on this post were taken by our son-in-law Kris while we posed for Jenny.)

My Gromada men - Tony, Brandon, Joey & Dad Joe 

Sibs - Carolyn, Brandon, Joey, Elizabeth & Tony

Posed with sibs seated and Dad & Mom standing 

Relaxing between shots 

Front - Carolyn, Elizabeth, Me & Brandon
Back - Tony, Joe & Joey

Note Joey in proximity to, touching or with an arm around Brandon in every shot. This was purposeful on his part. He said he needed to be, and made sure he was, next to Brandon with every change of position. 

Brandon died three Saturdays after the families' photo shoots. I arrived home after his death at around 3 a.m. on Sunday morning and turned on my computer. I felt too "wired" to sleep, and I needed to let some people know what had happened. Email and Facebook let me do that quickly. But me being me, I had to check my own email for messages. And there was an email message from Jenny with, ironically, a link to the proofs from the photo shoots of the beautiful family Brandon and Christina had created and of the family in which he grew from cuddly baby to wonderful man. How fitting the first stanza of Ringo Starr's song Photograph as I flipped through the slideshow with tears streaming down my cheeks...

"Every time I see your face,

It reminds me of the places we used to go.

But all I got is a photograph

And I realize you're not coming back anymore."