Saturday, March 29, 2014

AC - We Thought He'd(we'd) Dodged the Cancer Bullet – Part 3

Where was I? Oh, yes, between the March 5, 2010, “Mom, the doctor called this morning; I have cancer,” and Brandon’s March 29, 2010 surgery, members of a “tumor board” met to discuss how to act on Brandon’s pathology report and we went with him to a “meet the head and neck surgeon” appointment. (I got the impression not many parents accompanied a 36 year old to such appointments!) The surgeon reviewed his plan for the surgical procedure.

Although he didn’t give the procedure a name, he went over possible outcomes based on what he might find once the surgery began. It was possible that very little tissue would have to be removed but he wouldn’t hesitate to do what was necessary to remove any disease from Brandon’s right maxillary sinus. He explained that he might have to remove some of the bone in that sinus, including bone of the hard palate, which would create a cleft palate.

March of 2010 went by in fog of hope and fear. Many prayers were said. Many tears were shed. 

The day of March 29, 2010 Joe and I joined Christina and her parents at the hospital as Brandon was admitted to the pre-op area. When the transport team came to wheel Brandon to surgery, we all gave him a kiss and then headed to the waiting room for several nerve-wracked hours. We had no idea what the surgeon would find or how extensive the procedure would be. At some point one of the OR nurses said the doctor had asked her to call and tell us things were going well – whatever that means.

Finally, the surgeon called us into a consult room. Brandon was in the recovery area and doing well he said. He’d stripped the entire right maxillary sinus of its mucous membrane. No cancer was detected in any area other than one small bone facing the nose. (One of the turbinates, I think.) He’d removed that bone and sent it with the other tissue to Pathology. Brandon would be followed closely with check-ups every three months for several years, but everything looked good. (I got the impression the surgeon was taken by surprise when I threw my arms around him.)

March 29, 2010 - Post-maxillectomy

March 30, 2010 - the day after

We took Brandon home to recover and after a few days he headed back to his own place. I’d found out the name of his procedure was a “maxillectomy,” and it often involves the removal of much of the hard palate or of bone underneath the eye, which means the eye must also be removed. (I was glad I hadn’t known the name of the procedure before the surgery, which really isn’t like me! I usually want to know every detail in advance!) Of all the bones that may have been affected, Brandon lost one that seemed the least consequential. Yes, it would cause discomfort and its removal involved some long-term unpleasant side effects, but compared to what might have been….

And our family breathed a collective sigh of relief and felt thankful thinking Brandon/all of us had dodged a lethal cancer bullet. 

Thursday, March 13, 2014

Guilt Lives On...

Every birth results in twins – twin A: a vulnerable, needy, immature, unique human individual and twin B: Guilt. (I suppose I had quadruplets when I gave birth to twins three years after Brandon, and Elizabeth’s and Brandon’s Guilt twins grew more demanding when I brought twin babies and twin Guilts home!)

Unlike a unique human individual, Guilt never seems to die. It may seem to others to make no sense, but every bereaved mother I’ve met continues to nurture Guilt. I am no different. Guilt sometimes wraps itself around me. It clings so tightly I need no wrap, sling or carrier.

Did I do – or not do – something when I was pregnant with Brandon that later caused him to develop this weird, virulent cancer? Did I eat or drink – or not eat or drink – something when I was pregnant with him that led to this cancer? Did I somehow expose him to something or not watch him closely enough so that he was exposed to something that led to the development of this cancer? Did I do everything in my power to track down treatment options after he was diagnosed? What did I miss? How did I fail to protect him?

There must have been something I did or didn’t do, because he shouldn’t have died. He should still be here.

My head knows this is stinking thinking. My heart doesn’t always believe or accept it. Guilt lives on…

Friday, March 7, 2014

AC Ever After – Part 2

Where was I? Oh, yes, “Mom, the doctor called this morning. I have cancer.”

The moment Brandon hung up, I leaned against a shelf in the closet and the tears started. I think that’s how Tony found me. The fuzzy numbness still wrapped me in its arms.

I spoke with my husband Joe, but I can’t remember who called whom. He said he had a call in to the surgeon who’d removed Brandon’s nasal polyps, and he promised to call again after he’d spoken with him.

There were beds to make, rooms to straighten, and a dining table to set. Joe(y) and Mia were  already on their way from Chicago, and our in-town children would be arriving for dinner within hours. With Tony’s help, I woodenly checked off each of the tasks on my list, moving through our house in a daze.

Joe called back after he’d spoken with the otolaryngologist. Brandon had some sort of squamous cell carcinoma. The “tumor board” at our university hospital was to discuss Brandon when they met the following week. Then they’d recommend what they thought should be done next. Joe also said he’d decided to leave Florida early and come home. He already defaulted his tennis match and had scheduled a flight later that evening. I wrote down the details, and Tony said he’d go to the airport when his dad’s plane came in.

I had mixed feelings. I wanted Joe home and was glad he’d have more time with the entire family. But did he really need to interrupt a trip he’d planned for months? My brain wanted to think this really wasn’t a big deal. If Joe was ready to default and come home, it felt as if he was trying to tell me something. 

Soon younger Joe(y) and Mia arrived, creating a happy distraction. The house filled with adult children and their significant others. Brandon worked his magic in the kitchen and chatted with the rest of us as we snacked on appetizers.  Bottles of wine were uncorked and glasses poured. Eventually, dinner was ready and we moved to the dining room. More wine was opened and poured.

Conversation remained fairly light, the meal was delicious, and the evening’s conversation seemed to set the new family standard of sadness coupled with joy. The unwelcome guest, Cancer, became a topic of conversation for the first time, and I think fear led everyone to treat its intrusion as a joke. Discussion of Brandon’s news mingled with joyful conversation of the two upcoming weddings. Tony updated us on the plans for his wedding to Kristin in late June. Brandon and Christina shared the details for their July wedding. Tony left for the airport and then returned with his dad. Joe jumped right into our boisterous discussions.

Then Joe(y) and Mia announced their joyful news. They were expecting their first baby in September! The excitement was palpable and everyone was speaking at once.

As the room finally quieted, Brandon hugged his brother and joked, “Wow, you couldn’t let me play the cancer card for even one night!”

With that I felt joy and sadness settle in my soul as inseparable inhabitants. My guess is that both have taken up permanent residency.

Wednesday, March 5, 2014

AC Ever After - Part 1

Four years ago yesterday our family was blissfully unaware that our world was about to be turned upside down, inside out and would forever after exist in an altered state. Like you, we went about our lives unknowing. An unwelcome guest, one that had been lurking in our midst for months and perhaps for years, was about to make the surprise announcement that it was claiming permanent residency within our tightknit family.

It was a busy week. My husband Joe was in Florida to play in a tennis tournament or two. He wasn’t expected home until at least Sunday, March 7th. I’d spent much of Monday with Brandon after he’d had an outpatient procedure to remove the nasal polyps causing his frequent nosebleeds. He bounced back by late afternoon, and I thought no more of it as I went about the rest of my week. Thursday, March 4th, our family’s last day BC I taught a day-long seminar and later drove to the airport to meet our son Tony who was coming in for the weekend from New Jersey. His twin Joe(y) with wife Mia were driving in the next day from Chicago. In addition to their plans for a weekend catching up with high school and college friends, the family looked forward to having both of them home so we could celebrate their March 9th birthday a few days early. A family dinner was planned for March 5th, a Friday night.

Depending on your age, do you remember where you were when you learned of the attack on Pearl Harbor, the assassination of President John F. Kennedy, the flying of planes into the World Trade Center? There are other dates, personal touchpoints, in the lives of every human when some profound truth is revealed that causes time to stop. Not only can one remember where she/he was, the minutiae of the environment at the time of the discovery may be recalled with sharply focused detail and the words of any conversation may replay in the mind like a broken record.

I was putting laundry away in the closet of our Master bedroom. The phone on a nearby nightstand rang. I ran and picked it up, hitting the “on” button as I returned to the closet to continue putting clothes away while I talked. I saw Brandon’s name on the phone screen and figured he was calling about some detail about the coming evening’s dinner menu, as he was to be the chef.

“Hi, Bran. What’s up?” I asked. I was not ready for the answer. If I lived one thousand years, I would never be ready.

“Mom, the doctor called this morning. I have cancer.”

I can still hear his voice, how it sounded, in my ear telling me this.

“All of the other polyps were fine. Just one had cancer.”

I could hear Brandon’s fear. I could feel my own. I clutched a shelf to keep myself from collapsing in a heap on the floor. Every protective instinct I possessed pushed forward. Instantaneously, my wonderful adult son was my baby once again.

My mind leapt back three days to the conversation with the surgeon after the nasal polyps removal. Something in his voice or its expression – or was it my intuition – caused me to mentally lurch when he said the word “cancer” as he told me he’d sent the nasal polyps to the pathology department for examination, which is standard procedure and I knew that.

“Did he say what you had to do next? Have you called your dad (a physician) yet?” I asked.

I can’t remember if he said he’d already talked to his dad, but I think he said he needed to hang up so he could call his dad next. I think he said the otolaryngologist was to get back with him after he’d discussed with a colleague who and what Brandon should do next. I can’t remember. I just remember hearing his voice repeat over and over, “Mom, the doctor called this morning. I have cancer.”

A fuzzy numbness was setting in and my mind seemed to have gone blank. I think I was taking off on my first business trip to Denial. I can hear myself thinking cancer’s not a death sentence, we don’t have enough information yet, Brandon will get treatment, he’ll be fine.

Tuesday, March 4, 2014

BC Anniversary

Today is an anniversary for our family. It's the fourth anniversary BC - Before Cancer. Every day after March 4, 2010 is forever changed. Being AC - After Cancer - does that to a family. There are silver linings. I feel more aware and appreciate  each member of my family more than ever. However, I don't think I was ever a particular slouch in that area. And now I often feel neglectful, because I can see the joys and the pain of those I love most, but it sometimes can be difficult to respond as I'd like or as I would BC. I don't even know why this is difficult most of the time. 

Tonight, another family we know is dealing with the last day(s) of a loved young adult child. Their family is also divided by BC/AC. Please keep them in your thoughts and prayers. 

BC - from left: Carolyn, Brandon, Tony, Me, Joe, Joey, Elizabeth

Saturday, March 1, 2014

No Big Deal?

Brandon and our entire family’s journey with cancer – with terror, with hope, with denial, with a vivid joy, with crushing sadness and grief - officially began four years ago today, March 1, 2010. It hadn’t started as a particularly good year for me. I had a health scare of my own that January, which was finally resolved in late February.

In late January or early February, Brandon told us he had an appointment with an otolaryngologist. He’d been experiencing nosebleeds several mornings a week since the fall of 2009, and he wanted to figure out the cause and take care of it. “Mom,” he said, “You’ve always told us that if we’re bleeding from a place we shouldn’t, we should get it checked out. So, I’m taking your advice.” Nasal polyps were diagnosed and the “no big deal” outpatient surgery was scheduled for March 1st.

“Mom, Christina (then his fiancĂ©e) can take me to the surgery center and drop me off, but she has a meeting at work that morning and can’t stay. Would you mind coming to pick me up?” (Like me, Brandon was more a night than morning person, which was the reason there was even a question about being there with him for an early morning surgical procedure.) Of course, I said I didn’t mind! And I really didn’t – even if it was a bit early in the day for me!

I made it to the outpatient surgery center not long before Brandon was wheeled in for his procedure. No big deal. Nasal polyps. Lots of people have had these. Lots of people have had nasal polyps removed. I’m a nurse. I knew it was a “no big deal” procedure. I settled in the waiting area with a People magazine. I can’t remember whether it was the current issue or weeks to months old. It didn’t matter. Mindless entertainment was the objective, and it achieved that objective.

Before I knew it Brandon’s surgeon was beckoning me to a more private “consult” room. “Everything went well,” he said. “Brandon’s in Recovery. They’ll call you back as soon as he wakes up a bit.”

Was there a change in his voice or did his expression change somehow before he then said, ”The polyps were sent to Pathology for microscopic examination. They’ll look for cancer or other complications.”

As I said earlier, I’m a nurse. I know it’s standard procedure to send tissue removed during a surgical procedure to Pathology for examination. Still, something the surgeon said or, perhaps, something in the way he said it, or it may have been some weird intuition, but my antennae were suddenly up and standing on end. I can only say that something seemed “off,” although I can’t say precisely what it was. It was one of those moments when I felt that I stood outside of time. If you’ve never felt it, I wish I knew how to describe it more clearly.

(A year or so later I had an opportunity to ask the surgeon if he’d suspected that one of the polyps was cancerous, and that suspicion may have affected his facial expression or the tone of his voice when he talked to me after the procedure. He said, “Absolutely not. I saw nothing out of the ordinary” with visual inspection. “I was as surprised as anyone later that week.”)

The moment outside of time passed. The surgeon had to move on to the next patient and the next waiting family. Brandon began to wake more, so I was called back to his cubicle in the Recovery area. Before long I was driving him to our house, so his dad or I could be with him until we knew he was fine. As I recall, he was ready to head to his own home within another couple of hours.

Brandon got back to his life, and I got back to mine. I was busy that week because one of our younger sons and his wife were coming for the weekend. I forgot about the moment in the consult room. The source of the nosebleeds had been removed, and Brandon was back to work without missing a beat.

The procedure was done on a Monday. Our family’s world was to be forever changed only three puny, normal days later, and all of us were completely clueless…