Part of the Plan?

Maybe the Azande had it right.

A water tower collapsed, killing two tribespeople, while anthropologists studied the north central African tribe. The Azande blamed witchcraft. The social scientists surveyed the water tower and concluded that termites had eaten through the wooden posts and weakened the entire structure, causing it to fall on the men. The Azande thanked them for their explanation, but asked, "Why did it happen to those two men at that particular time?"

Whether life is a series of random coincidences or is fated one way at the most profound times, as the Azande clearly believed, has occupied my thoughts since Wednesday.

Shortly after Verna was first diagnosed with breast cancer in early 2006, she commissioned a photographer (thanks to our dear friend Christa), who specialized in mothers and their newborns to take a picture of her and Maya before Verna had her double mastectomy. In the photo, Verna reclined on our bed, virtually bald, naked from the waist up, her full breasts supporting the back of Maya.

A year later she had the same photographer shoot Maya and herself in similar poses. Maya the toddler smiled at Verna, sans breasts, and her full head of black hair.

The framed dual photos adorned the wall above our bed for nearly four years until Wednesday. I'd noticed a slight gap in the frame about a week ago but thought it could easily be repaired once I made the time. But when I went into the room Wednesday morning, two sides of the frame were dangling off the photo.

Again, I don't believe much in signs or messages from beyond, but I did pause to wonder why the frame ripped apart at this time? As Verna battled between a state of hallucinations and semi-lucidity, was what happened to the frame some cosmic communique or an explainable coincidence that was bound to happen at some point given the weight of the photographs and the cheap frame?

I know what Verna's answer would be if she could offer me anything. She believed in signs and portents with utmost conviction. She suspected she might have had something wrong with her before her original diagnosis after a series of dreams in which a poisonous spider lowered itself onto her chest.

But she cannot look me in the eyes right now and shout, "Aha! I told you so. The breaking of the frame clearly represents or is a message from the universe." Or tell me that it symbolized the damage we are witnessing to our beloved Verna and to our lives. Or that I am no longer supposed to have the framed pictures in the house.

She cannot speak because since last night, about 24 hours earlier, Verna has been asleep and, I fervently hope and pray, comfortable beyond measure after hospice upped her pain medications yet again.

I don't have the answer to the dilemma of the dangling frame and wires. And I don't believe the Azande's superstitious notions of the world make them primitive versus the rationality of trained scientists. I just don't know how to explain what happened here. Maybe the Azande were right.

Heart of the Matter

Yesterday was Terms of Endearment meets the Twilight Zone meets the Wefald and Friedman household. Verna basically said goodbye to Miguel and Maya. And, like the moment when Debra Winger addresses her children from her hospital bed, buckets of tears gushed forth.

It all started last week when Verna asked the spiritual support counselor in a barely audible voice, "I want to say goodbye to my kids."

So hospice arranged for a social worker and a bereavement counselor, who is also trained as a therapist, to help Verna facilitate the conversation. We decided on yesterday because Miguel was still home (school started today) and Maya returns from preschool in the early afternoon.

Prior to the meeting Verna asked me, "So hospice thinks I'm going to die?"

"Yes," I said. "But they don't think it's imminent. They just wanted us to schedule the meeting sooner rather than later."

Verna was pretty alert on Saturday, but dazed and slightly confused most of Sunday, so I was worried how coherent she'd be when she spoke to the kids. But she was surprisingly present once the gathering began.

Our social worker Deborah Schwing started by asking the kids to assess how Verna was doing through their eyes. Miguel said, "She's been getting weaker and is in a lot of pain." Maya parrotted Miguel's view.

"Maya," I said, "What's happeing to Mommy?"

"Mommy's going to die," Maya said.

"And then how will we see Mommy?" I asked.

"She'll be in star in heaven like Grandma Chela," Maya said.

Deborah then asked Verna to describe her feelings and how she understood her situation.

"Well, I'm dying," Verna said. "I'm angry that I won't get to see the kids grow up, won't be there for so many milestones--graduations, bar and bat mitzvahs, weddings. I am sad I won't ever meet my grandchildren."

Tears were flowing freely down Verna's face and mine. I felt intense anger and sadness as well that we and Verna were being robbed.

Deborah asked Verna to talk to the kids and share her hopes and dreams for them.

"I want you to find your passion in life. Always be good," she said. "Do unto others as you have them do unto you. Work hard. Work hard in school. Always do what is right. Be a good role model."

Miguel was quiet, head down, and preoccupied with a booklet near him on the recliner chair. Maya moved from the hospital bed, snuggling against Verna, to my lap. She was growing restless. At one point the beareavement counselor, Andrea, who will soon see Maya for play therapy, took Maya upstairs to play.

"The two best days of my life," Verna said, "were February 9, 1998, when Miguel was born, and January 19, 2006 when Maya had to come early through a c-section (so I could start cancer treatments)."

Maya and Andrea returned. "I love you both so much," Verna said. "And I will always love you forever and ever."

Deborah asked Miguel how he was feeling about Verna dying. Tears welled in his eyes, one of the few outward expressions of emotions he's allowed himself.

"I've been thinking about how I'm going to be without a mother," he said. I lost it again and rubbed my wet, wet eyes.

"And it's OK for you to be angry sometimes, Miguel, with your dad for not being your mom," Deborah said.

"I could wear one of her dresses," I said as Deborah and Miguel smiled.

"Just be gentle with each other," Deborah added. Then she turned to Verna, "Is there anything else you want to share?"

"Miguel's 12 so he'll have memories of me, but Maya is so young. I am worried she won't remember me as she gets older," Verna said, tears streaming.

"That won't happen," I said. "We will always remember you."

"No, Mommy," Maya said, "I won't ever forget you," a look of unconditional conviction on her face.

We will never forget Verna. Her life will always be a blessing and a legacy for the children, me, her friends and family. I truly hope our session brought her comfort. As her pain increases, she needs that positive energy to cope and rest.

Cosmic Stars

Our emotional roller coaster continues.

Maya sat on the living room floor this evening with me next to her and Verna's sister-in-law, Donna, on the couch. Miguel was at soccer practice after having spent the day with me and a buddy of his at a water park. Verna was asleep on her special recliner chair right behind us.

"Mommy's going to die," Maya said, lying on her back.

I got on my knees and edged towards her. "Yes, she is," I said. "But she will always love you so much. And she always be able to tell you how much she loves you. She'll be a star in heaven--"

"--Just like Grandma Chela," Maya interrupted. Verna's mother died in October of 2008, and we've always told Maya that she is a star in heaven illuminating the cosmos (but not in those words).

"That's right, Mommy will be a star in heaven," I responded. "I hope not too soon. But then we can go outside every night and see which star is Mommy shining down on us."

Maya looked up at the ceiling and said, "There's Mommy. Let's pretend Mommy died." She waved. "Hi Mommy."

Verna suddenly woke up and said, "Hi Maya."

Our hospice social worker said when these moments occur to take extreme advantage, which is why I engaged Maya and affirmed for her that, yes, Mommy is going to die. I tried to maintain an almost light or humorous demeanor as she and I talked. Donna, however, turned towards the window with tears in her eyes. Later, she and I held hands and I admitted, "I almost lost it out there with Maya."

But Maya knows what is happening even if she can't fully digest what death means. Last week, on the day Verna and I found out she might only have a few days left, I was driving Maya to her 1/2 hour swimming lesson after preschool.

"When we get home," I said, "we can see how Mommy's feeling."

"Mommy's going to die," Maya said. "And I'm going to be sad."

I reached for the proverbial brass ring and said, "Yes, Mommy's going to die. And we're all going to be sad. But we'll always have Mommy in our hearts, and she will always, always love you very, very much."

Yes, Verna is going to die. Sooner rather than later. Just not yet. Today her pain level hovered at a seven (on a scale from 1-10, with 10 being the most pain), she said, and didn't subside very much even with all her pain medication. Aside from insisting on going out to help Donna bath our dog who'd thrown up on herself in her kennel last night, Verna slept or was in a foggy state for most of the day. So tonight, just before I helped her upstairs to bed (she still prefers to sleep in our bed mainly because Maya, who shares a room with us, wants her around), I said, "Verna, where's your pain level right now?"

"Seven," she answered.

"Is it unbearable?" I asked.

She clearly shook her head. We have an agreement that once her pain becomes unbearable, she wants me, as her healthcare agent and POA, to instruct hospice to steadily increase her pain medication and cease the steroids, both measures that will hasten her death.

But tonight she did not hesitate to move her head quickly from side to side against the hospital bed pillow. Sometimes non-verbal communication is a beautiful thing.

What The !@#$&%?

Verna picked out her casket today. Yes, that's right. I wheeled her around a room filled with steel and wood caskets, ranging from $3200-$11,000, and she chose a dark wood one with the Pieta (Mother Mary cradling Jesus) and the Last Supper etched into the metal moulding around the perimeter of the coffin.

Surreal beyond the Twilight Zone would not begin to describe the swirl of emotions we experienced today at Montes Chapel of the Pines in San Anselmo (we get 10% off if I mention him in a blog--just kidding), about five miles from our house.

As I pushed Verna in her wheelchair to the front entrance, the door opened and two friendly beagles greeted us. Verna immediately smiled. I was worried for many reasons how our appointment might go. As hospice has increased her medication she has grown foggier and drowsier, so she spends a chunk of the day sleeping on her hospital bed in the living room. Would she even be awake or semi-lucid?

I'd promised Verna months ago that she'd be able to choose her casket. Knowing that her situation was becoming graver by the day, I called the mortuary this morning. The receptionist transferred me to the voicemail of one of their intake counselor's, Ed, who we later learned is the funeral director, owner, and sole fulltime employee. He also drives the hearse.

"I've worked here for 15 years," he told us. "And I bought it two years ago from the family that'd owned it. Mr. Montes still works with me parttime."

Well, my fears about Verna's cognitive condition were unfounded. I haven't seen her this alert in at least two weeks. She chose her casket, guest book, and prayer card scenes and poem, and decided to forego embalming and a rosary service on the eve of her funeral.

And as I sat there amazed yet again by my wife's unshakeable spirit, I also kept thinking, "This is not happening. This is not happening. When will our nightmare end?"

We shared that crushing anxiety with her father, brother, and his wife before we left the house for the funeral home. Maya was at school, Miguel at baseball camp. In the presence of a hospice nurse, the five of us kissed Verna's forehead, rubbed her arm, and cried. She cried, we cried, and all of us not so silently railed against how unfair it is that we are days, weeks, months away from Verna's death.

"The hard part is not knowing," Verna said to the hospice social worker as tears streamed down her face. "I just wish I could know how much longer I have."

The social worker nodded and then said, "I know."

In the middle of our appointment with Ed, the phone rang. "You can take that if you need to," I said.

"It's the Humane Society," he said. "I have to."

It turned out that either Ed or his assistant left the door open after we wheeled in and one of the beagles ambled into the neighborhood, where he was found by a Good Samaritan who'd called the Humane Society and left her phone number. While Verna and I surveyed the caskets, Ed walked a couple of blocks away to retrieve Fletcher.

Although we found out last Thursday that Verna could be dead within a few days, according to hospice and her oncologist, she seems to be doing pretty well after hospice adjusted some of her pain medications. "And I still have things to do," she has said.

She's been writing cards to the kids for all the birthdays, graduations and other special occasions she will miss; she's helping plan her nephew's wedding in mid-September. He and his fiance, who have a gorgeous 20-month old daughter, decided to take the marital plunge sooner in order to accomodate Verna. Today was also part of Verna's process of accomplishing tasks and creating more peace of mind for herself, and another of example of how she controls as much as possible in a situation that has mostly spiralled beyond all control.

"Well, we took care of that," she said as we left the mortuary.

Yes, we did. Verna picked out a casket today and I still can't f@#$%ing believe it.

I Knew the Bride When She Used to Rock and Roll

The bride wore a non-traditional black and white floral print dress. The groom, sans jacket, wore black dress slacks, a blue shirt, and a multicolored silk tie bought by the bride in Italy. Almost 19 years after they were first married on a typically overcast San Francisco summer day in 1991, they renewed their vows before 60 family and friends this past Saturday.

There were already tears in my eyes when Verna’s father guided her, gripping her cane, along the sidewalk outside our home. “Now that you really know me,” I said to her father as they arrived in front of me, “are you sure you want to let her go?”

He sort of smiled, and I clasped Verna’s hand in mine as we walked closer to Marie, our dear friend who also officiated at our wedding ceremony in Golden Gate Park’s Rose Garden on July 28, 1991. Trailing just behind Verna and her dad were our daughter, Maya, clad in a green chiffon dress and holding a bouquet of roses, and our son, Miguel, who was one of my best men, the ring bearer, and the DJ, ‘DJ Miggy’.

The weekend had been a whirlwind for all of us, as family streamed in from Arizona, Central California, Florida, Massachusetts, and Connecticut. I was concerned that all the activity would adversely affect Verna, who tires easily because of all the medication she’s taking from hospice. So, prior to the ceremony, I spoke to the crowd before Verna and her father walked to the strains of “Here Comes the Bride”:

“First, I’d like to thank all of you for being here and sharing this special day with us. Also, since we want to preserve Verna’s health, I ask most of you to use the bathrooms in the park,” about 300 yards away, “or go like Gigi (our dog)”, who was at that point sniffing around the bushes.

As it turned out, Verna and our sister-in-law Donna (wife of Verna’s eldest brother, Marty) sequestered themselves upstairs during the day prior to the ceremony at 4:15 pm. Verna took two naps, got a pedicure and manicure from Donna, and more or less relaxed without anyone bothering her. Maya occasionally squeaked through to be with her mommy, but we’d ordered everyone else to stay away. And they listened.

Marie briefly introduced the ceremony and then shared a story that, she said, aptly demonstrated our strength as a couple. Several years ago, residents in Bernal Heights (a neighborhood in San Francisco) claimed that the stone relief of the Virgin Mary, outside a Church, was crying. Verna, Marie, and I went to investigate, and, sure enough, both Verna and Marie saw tears gently streaming down her eyes. I said, though, “No, it’s the light hitting the wall.”

Marie said that even though Verna and I often had two ways of seeing the world, we were of one mind and heart in terms of our love and commitment and willingness to accept our varying perspectives.

Then in a nod to something we included in our original wedding ceremony, Marie shared some humorous vows I’d written earlier in the week. “Steve, do you promise not to swill any more of Verna’s liquid morphine?” And, “Verna, do you promise to let Steve hop on the back of your wheelchair with you in it and coast downhill in the park?”

While both Verna and I acknowledged her cancer in our renewal vows, we also said almost defiantly that we wouldn’t let it define our relationship or family. Love and our bond are stronger than Verna’s life threatening illness. So the humor was our attempt to accept reality and also playfully attack the incurable enemy that is ravaging her body.

Next we jointly lit a candle our dear, dear friend Amanda recently sent us from Lourdes, a Catholic shrine in France, where many believe the waters are healing and Bernadette saw a vision of Mary, that Verna and her mother visited in 1993 as part of holiness tour sponsored by a local church. She and her mom also toured holy sites in Portugal and Italy, which is where she purchased my tie.

We shared our renewal vows next, with Verna going first, and, unlike 19 years ago when she was nervous and no one could hear her, confidently pronounced how I was still the one for her and how our love has grown stronger amid the past four often horrendous years.

With tears brimming in my eyes and, surprisingly, words catching in my throat, I said, “It took your cancer for me to be able to surpass you on a bike.” I also said, “I am forever yours through all eternity and beyond”, which was similar to Verna’s vows.

Miguel then handed me Verna’s wedding ring and I moved to place it on her finger. But suddenly Maya grabbed the ring and slipped it on Verna’s finger. People giggled at Maya’s gesture. I then gave my ring to Miguel and he imitated his younger sister and put it on my finger.

Marie said, “Then by the power vested in me by this community of love I pronounce you still married.” I leaned over and Verna and I kissed twice as our family and friends clapped. I felt a mixed wave of sadness and profound joy. There was nothing better than renewing vows with my soul partner and the mother of our children while our Miguel and Maya had such active roles in the ceremony. But I also wondered if Verna and I would celebrate together our 20th wedding anniversary next summer.

Verna and I admitted to each other in 1991, weeks before our ceremony, that there are no guarantees in life. We wholeheartedly pledged ourselves to each other, but knew that love ebbs and flows and only time would tell if we’d survive the journey of love and life. We acknowledged, though didn’t really expect, that our love might someday cease. Yes, we said over and over, there are no guarantees, but we’re going to try, try, try and work, work, work.

We just didn’t know then that cancer would prove us right in a way we never expected.

To love and life. And to eternity and beyond.

Father's Day

Father’s Day is Maya thumping on the end of the bed at 6:30 in the morning on June 20, and then climbing in without an invitation. After a whisper or two with Verna, Maya said, “Happy Father’s Day, daddy.” It was pretty hard to get upset about having my slumber interrupted after that sweet greeting.

Father’s Day is mountain biking with Miguel. We decided about six weeks ago to hit the twisty trails of Marin County, where mountain biking was born, and bond even further as males. The morning of our first ride I had my weekly phone call with my mother, who lives about 3000 miles away in Connecticut.

“What are your plans for the day?” she asked.

“I’m going mountain biking with Miguel.”

She went on about how he’d gain so much because of my extensive cycling experience. I’ve been a fairly avid road biker since 1994.

“But, Mom,” I said, “I’ve never been mountain biking before.”

“Well, I hope you’re going to wear elbow and knee pads,” she said in true Jewish mother fashion.

Yeah, right, I thought. “No, Mom, I’ll be OK.”

Well…

I don’t even own a mountain bike. Our neighbor, Ken, who works tirelessly as a regional manager for Kentucky Fried Chicken, bought a high-end mountain bike a decade ago that he hasn’t ridden in two years. “Borrow it anytime,” he said. “Store it in your garage. No one is using it.”

So Miguel and I unloaded the bikes from our minivan and headed toward one of several China Camp trails, a series of dirt-packed paths along the shore of San Pablo Bay. In deference to my not yet pubescent son, I decided to hang back a bit and not show him up with my superior bike riding skills.

“Where should we go?” he asked.

“Your choice,” I said, not realizing the Frostian option I was offering. I just assumed he would choose the flatter and more popular trail near the parking lot. But he went literally for the trail less traveled and we made a hard right onto a bumpy path with exposed tree roots. He was already well ahead of me and looked quite comfortable.

I felt anything but comfortable as the bike fishtailed around corners and I lurched forward as if I was about to be hurtled into space. The brakes were damn good. I pulled into another switchback turn and lost control of the bike, falling forward into a thicket of poison oak.

“Hey, Miguel,” I shouted. “Hold up, I fell off the bike.”

After chugging uphill for about 20 minutes, one of us (probably me) suggested we turn around and sample the flatter terrain on the populous trail. Much to my slightly battered ego and bruised shins, Miguel agreed.

We finished the ride sweaty and satisfied, each of us having drained our hydration packs of all water. I was completely excited that my teenager to be not only kept up with me (OK, surpassed me), but also enjoyed an athletic experience with his middle-aged father.

“Let’s do this every weekend,” he said as we climbed (OK, I limped) back into the minivan.

Father’s Day is painting Maya’s fingernails and toenails. Maya is our princess and total girlie-girl, who is obsessed, no, enamored with all things princess (Belle, Snow White, Jasmine, Ariel, Aurora, and Cinderella). She loves frilly dresses, necklaces, rings, bracelets, hair bands, and twirling like a ballerina. Last week she asked me to polish her nails right away.

“I’m having a Girl’s Day with Daddy,” she said as I applied bright pink polish. It may have been the fumes, but I wasn’t sure if was going to hug her or cry. Or both.

Father’s Day (and Mother’s Day) is every day. Thanks goodness.

Stayin' Alive

One of the songs playing lately on the soundtrack that loops endlessly in my brain has been “Stayin’ Alive” by the Bee Gees. I close my eyes and visualize John Travolta strutting his disco king stuff to the high-pitched warbling of Barry, Maurice, and the other brother.

“Aye-aye-aye-aye, stain’ alive…”

Staying alive has been on my mind because Verna’s oncologist told us last Tuesday that we should contact hospice.

“Are you saying this is the beginning of the end?” we asked.

“Yes,” she said. “Now, I don’t know how long we’re talking about. Could be a few months, two or three, but we just don’t know.”

I tried to pose a few more questions, but the words came haltingly as the tears welled in my eyes. I looked over at Verna in her hospital bed and she was also crying.

So we cried, tried to breath, and cried some more as the reality of the doctor’s words seeped into our consciousnesses. The cancer support manager, who no longer even cares for breast cancer patients but sees Verna because she adores her, asked Verna to share her understanding of what the oncologist had said.

“But I’m not ready to die,” Verna said after she answered the cancer support manager. “I have a lot left to do.”

“And that’s OK,” said the manager. “But sometimes it doesn’t matter how hard we want to live.”
Verna mentioned our renewal of wedding vows, planned for July 24, the wedding of our nephew (for a date to be determined), and the wedding ceremony of one of our closest friends in late October.

As the anxiety and anguish of the moment dissipated and we retreated to the comfortable confines of sarcasm and dark humor, I said we were definitely having the renewal of vows ceremony. “I can always do it alone.”

But I am pretty sure Verna will be there. Physically there, that is. Maybe that’s the hardest part of this latest body blow, the highly unnerving uncertainty. There is no way for anyone to predict how long Verna has left to live. All her doctor can offer is, “We don’t know.” On the other hand, not knowing is less definite.

The latest chapter in our journey began late last Sunday night just before midnight. Verna’s full body pain had been escalating for a few hours before she finally declared, “We need to go to the hospital.” She was unable to move. She later said, “It feels as if my legs are in vise clamps.”

So I quickly wrote Miguel a note that I’d be back soon (though I doubted he or Maya would wake up) and drove Verna to the hospital, which is 2 miles away. After she was admitted to the emergency room and we met her nurse, Glen, a Filipino native we’ve known from previous visits, I returned home and tried to fall asleep.

Monday was a nightmare. Verna was sedated in a fog of narcotics, wracked with pain. She mumbled half sentences, had trouble swallowing, and her normally golden glow was pale. We met her hospitalist, the doctor in charge of her case while on the 5th floor, and a palliative care nurse, who offered suggestions to further control Verna’s pain. The cancer support manager and a Reverend with the spiritual support team visited and quickly arranged a single room for Verna.

I left to feed the kids and came back later. The nurse was just hooking up Verna to an IV blood transfusion when I split for the evening around 8:45. I was seriously afraid that Kaiser was going to call me in the middle of the night to say Verna had died. She looked that ill.

I dragged myself out of bed a 6 am and hopped on the Life Cycle. I stuffed the iPod ear buds in and opened my book as I pedaled into a relative state of escape and relief. Suddenly the phone rang. The caller ID read ‘Kaiser’, and I gulped. It was Verna.

“I feel much better,” she blurted out as I finally started breathing again. “The blood transfusion worked.”

Maybe Dracula and his ilk were on to something. The transformation in 10 hours was miraculous. The hospitalist had explained to us that if the transfusion worked it would provide lubrication for her bones, which were rubbing up against each other and causing the intense pain, and re-energize her anemic body.

By Tuesday afternoon we were ready to host Verna’s oncologist and the cancer support manager, both of whom shed nearly as many tears as we did. The oncologist explained that hospice would make it easier for Verna to manage her pain and avoid returning to the hospital.

“And we’re going to put you on a low dose chemotherapy pill because we’re not giving up,” the oncologist added. “I would love for you to prove me wrong by living a lot longer.”
So Verna’s challenge is anything but simple. She needs to stall death by staying alive. Somehow I know and feel she’s up to the challenge.

“Aye-aye-aye-aye, stayin’ alive…”