I often write about Brandon and his journey with cancer, and I often describe my journey since his death. However, I rarely post about the foundation my husband and I established in his name immediately after his death. Because we wanted no other families to know the grief we felt, the mission of Brandon's Foundation is to raise awareness about head and neck cancer but also to act by raising funds for the innovative research that can lead to better treatments and cures. I posted the following to his Foundation's blog yesterday. It seems appropriate to repeat it here. And if you're able, please donate to fund research, but in any case please share this with others so that more are screened for head and neck cancer. Thank you!


Five years ago - April 2010 - I'd never heard of Head & Neck Cancer Awareness Month, although our family had recently become acquainted with head and neck cancer. Only a few weeks earlier Brandon called with news that brought me, his mother, to my knees. I vividly remember where I was and what I was doing as he explained that one of the several nasal polyps he'd had removed a few days before had shown "poorly differentiated - or undifferentiated - squamous cell cancer" in his right maxillary sinus. One moment I was standing, the next I was not. My knees and my mind had buckled. But hey, how bad could this be? Surely, it was treatable. Cancer treatment had come so far.

The pathology findings from the examination of the nasal polyps were discussed by the University of Cincinnati Cancer Institute's tumor board. Surgery, a maxillectomy, was scheduled for later in March, and the head and neck surgeon told Brandon they would do what was needed to remove the cancer, which could include the creation of cleft palate, the removal of his right eye, or removal part of his jaw and/or nose. The cancer was found on a single turbinate bone at the nasal area of the sinus and that bone was removed. The mucus membrane was stripped from the right maxillary sinus and sent to Pathology for microscopic examination. No other evidence of disease was discovered. We all breathed deep sighs of relief. Head and Neck Cancer Awareness Month came and went without our realization that April was designated as such.

Then during an early August follow-up appointment, a resident palpated enlarged lymph nodes on the left side of Brandon's neck and found a "spot" at the back of his throat. A biopsy showed more of the same poorly differentiated, HPV-negative squamous cell cancer (SCC). A PET (positron emission tomography) scan found no other "hot spots" below the neck, so everyone felt positive as he dove into the whirlwind of port (port-a-cath) insertion for chemotherapy, fitting for his specially molded radiation mask, and the two months of the common brutal treatment for most head and neck cancers -pinpointed radiation 5 days a week for 7 to 8 consecutive weeks combined with chemotherapy every 2 to 3 weeks. (The blog photo of a smiling Brandon was taken at the end of the chemo-radiation combo. His port is visible just below is right collarbone and the radiation burns are obvious.)  Radiation resulted in burns outside and in, affected and thickened mucus production, caused his sense of taste to change. Chemotherapy damaged his hearing, produced strange tastes in his mouth, upset his digestive system in all ways imaginable. He chose to wait and see if he'd need a percutaneous endoscopic gastrostomy (PEG) feeding tube, which many, if not most, on the treatment journey for head and neck cancer now receive prior to treatment. None of us know how he continued to eat and drink throughout treatment, but he did, and he never shared how difficult it must have been. 

Brandon smiles in spite of radiation burns after several weeks of treatment.
(His port is visible under his skin, below his right collarbone.)

The post-treatment PET scan revealed new "hot spots" on a rib and his femur. He learned he was to become a father while undergoing radiation treatment for the new spots. The afternoon of his last radiation treatment, he hopped a jet to Paris to meet his wife, who was already there for business, for a long Easter weekend in the city of love and lights. They made the most of every moment. They welcomed daughter Morgan on December 3, 2011. Meanwhile, Brandon fought more and more "hot spots." Different forms of traditional and trial chemotherapy agents were tried. Each caused new and more uncomfortable side effects. None made an impact. He was fitted for a new radiation mask when "spots" appeared in his brain. The disease continued to march through his body, quickly overwhelming body systems. He died June 2, 2012. His father and I founded Brandon's Foundation the next day.

Head and neck cancer receives very little attention compared to many others. It is thought to be an old person's disease related to a lifetime of tobacco or alcohol use. However, the number of people affected by some form of head and neck cancer is growing and this growth is mainly among younger adults. Part of it is related to the same forms of HPV that cause most cervical cancer, but HPV does not account for many other cases. It is estimated that almost 46,000 will be diagnosed with some form of head and neck cancer during 2015 alone - that is about 125 persons each day being told they have this cancer. It's anticipated that more than 8600 of those journeying with head and neck in this country will die this year. 

Don't forget your own screening for head and neck cancer, as early detection can make the difference. Be sure a thorough head and neck cancer screening is part of every dental check up. If you're in the Cincinnati area, call (513) 475-8400 to reserve a spot for a free screening by the University of Cincinnati Health Otolaryngology – Head & Neck Surgery at the Barrett Cancer Center Area F from 8:30 a.m. – 4 p.m. on April 16. Last year the team performed approximately 230 screenings of which 17 required referred for follow up. 
Screening and early detection are only one part of the head and neck cancer picture. it is time to change the survival statistics and it is time for treatments that have fewer debilitating side effects. Only research can find the treatments and cures that will allow other families to never know the kind of loss we feel without Brandon in our lives. His Foundation's Request for Proposals was sent to researchers in February and many proposal submissions arrived by the March 27 deadline. Next week we begin sending these proposals out for "blind" reviewers by experts in the field of head and neck cancer. An announcement of the 2015 grant awards is to be made June 2, 2015 - the third anniversary of the date of Brandon's death.

PLEASE help us fund the research that will put an end to head and neck cancer. DONATE now so Brandon's Foundation may expand the number and amount of grant funding available for promising research projects. And the next time you sit down for a meal - the next time you enjoy the aromas and flavors of your food, the next time your mouth is moist enough and your throat is undamaged so that you don't have to even think about swallowing and easily passing food from your mouth down your throat to your stomach - think about Brandon and all those who are or have been on the head and neck cancer journey with him.

The Day My World Stood Still

March 5, 2010. Five years ago. My world is divided between before March 5, 2010 and after March 5, 2010, and there it will remain. Before. After. 

March 5, 2010 is the day a phone call brought me to my knees while putting laundry away in a closet. "Mom, the doctor called this morning. I have cancer." 

March 5, 2010 is the day I clung to a shelf so I would not completely collapse. 

March 5, 2010 is the day all my children enjoyed a family dinner at our home with Brandon as chef. Joey and Mia announced they were expecting their first child. We celebrated the March birthdays of four of our five children. Brandon shared that he was diagnosed with a sinonasal cancer. He then joked he was not even able to "play the cancer card" that evening, since Joey trumped him with the announcement of their expected baby. 

March 5, 2010. Dinner was fantastic, as it was always fantastic when Brandon took over in the kitchen. Conversation was light, heavy and just plain silly, as it was always so during our family dinners. Still, a bit of fear invaded the silliness and more than a bit of hope invaded the heaviness.

March 5, 2010. Our family's world briefly stood still, but all too soon it began to turn again. 

March 5, 2010. Five years. A moment and one very special person's lifetime. Five years. 

Brunch the weekend of March 5, 2010 L to R:
Tony, Joey, Mia, Joe, Christina, Brandon, Kris, Carolyn
(Several are out of camera range and Christina and Kris are partially obscured!)

Where's the Soundtrack?

After posting the other night I went back to our bedroom. My husband Joe was watching a movie. With each change of scene, the music would change. It struck me. Why don't we have a soundtrack that plays music to fit the mood or foreshadow what is soon to happen? Would it help or would it hinder? When might the notes have changed to signal that cells were growing wild in Brandon's sinus? Might we have known to seek help months or even years before? What happy music might have played in the background during periods when there appeared to be NED (no evidence of disease)? Would an occasional jarring note or two have been interjected, telling us that this happiness was to be short lived? What would have played those last few precious months when we could see his body failing, yet we all thought he had more time than what was given? Would the soundtrack that presaged Brandon's death have interfered with our ability to enjoy the time we had left with him still in our world? 

Questions, questions, questions - questions with no answers. 

Five years since P (Polyps) Day

Five years have come and gone since Brandon's March 1, 2010 procedure to remove nasal polyps. Five years since I went to pick him up after this routine procedure. Five years since I had no clue that only a few days were left of our family's "unknowing." I've already written a blog post about that day, so I won't rehash it now. 

Still, sometimes I wonder how long had this cancer - cells of Brandon's own body run amuck - been taking root, growing, spreading before the nose bleeds of late fall 2009 signaled their presence within the camouflage of nasal polyps? How long had these wild cells been mocking our unknowing? Had there been earlier, quiet signs that had been missed? If yes, would it have made a difference if the polyps had been removed then or was it already too late?  

Sure, it's moot. Still, sometimes I wonder...

Navigating the Sea of Sorrow

Memories wash over like waves. Some swirl around my feet, warm and pleasantly tickling from toes to ankle. Others pull me gently into deeper water before I realize what is happening. The swells bump me, gently lift me and set me down again, so I may easily replant my feet on terra firma. However, some waves of memory brutally drag me farther out into the deep. I feel the sand shift beneath my feet, threatening to pull me under. These waves often knock me over, pull my feet out from under me, and generate a sense of panic within. I feel myself tumbling over and over, colder, deeper. I must fight if I’m to regain my footing and find my way to the shore, but sometimes returning seems like too much work. At those moments the rough surf of grief seduces with its siren’s song humming, “Give in, give up, drown in the power of this sorrow.” I never know when or exactly how the tide of memory and grief will roll in.

 

Brandon scuba diving in the Caribbean - July 2010

Yet no matter when or how high tide arrives, I do regain my footing. I do find my way back to shore after being pulled far out into the Sea of Sorrow. I am still standing. WE – this family – are still standing. And we will continue to regain our footing no matter how brutal or seductive the waves, because none of us fights this surf alone. There may be times when one or another of us feels as if we’re facing the Sea of Sorrow alone. Perhaps there are times when one or another prefers to swim this sea in solitude. Still, one has only to call out and the others will quickly surround and guide her or him back to shore. I love my family. Each member is so unique and special, which is why the absence of Brandon has profoundly and forever affected the tides of our lives.


Added January 4th about 20 hours after posting my thoughts above. Speaking is Hazel Grace Lancaster, the narrator of the book The Fault in Our Stars. In this quote she shares feelings after the death of her boyfriend Gus.

"When you go into the ER, one of the first things they ask you to do is to rate your pain on a scale of one to ten… I called it a nine because I was saving my ten. And here it was, the great and terrible ten, slamming me again and again as I lay still and alone in my bed staring at the ceiling, the waves tossing me against the rocks then pulling me back out to sea so they could launch me again into the jagged face of the cliff, leaving me floating face up on the water, undrowned."

"O Christmas Tree! O Tannenbaum!

Want to go to the cemetery to take a Christmas tree to Brandon’s grave? Me neither. I don’t like to see the tombstone with his name and the dates of his birth and his death. Don’t like it. Too real. And I don’t really feel him there. I tend to feel him anywhere and everywhere else.

Yet as much as I know he’s not there, I’m also compelled to ensure he has a live Christmas tree where his ashes now reside. One with lights that work. The tree is small because I can’t handle or stabilize a bigger tree, but it’s just the kind of fir tree we both like.

I decorated the tree at home. Lights, gold-beaded garland, ornaments, bells, bows and a small Santa wind chimes. Why not keep the tree in a special spot at home where it would stay out of the wind and away from any inclement weather? I wish I knew. In spite of knowing he’s not at the cemetery, a real Christmas tree is a must. Go figure.

Brandon's Christmas tree 2014

And it has to light at night. The white lights I wound around the tree came with a battery pack and a 6-hour timer, which I’ve set to light from 4:45-10:45 p.m. EDT. Yes, I know the cemetery gates close at 5 p.m. and no one will see the lights each night. But like the lights place on windowsills each Christmas season to represent and welcome the Light of the world into homes, I want the spot marking the burial place of Brandon’s to have light. I can’t bear the thought of there being no light for him at night while I also know due to the unusual “vision” I’d experienced immediately after his birth that he lives in the perfect light. And I also want his spot to have sound, although I couldn’t give you a reason why. Still, the bells and the Santa wind chime are there for a reason.

Brandon’s 3-year-old daughter Morgan and I took the Christmas tree to the cemetery Monday. I staked the tree stand into the ground and then Morgan helped me add tinsel. I taught her as I’d taught Brandon and my other children how to carefully apply only two to four strands at a time at the end of a branch. Morgan loved adding the tinsel and watching it blow in the wind.

 

Morgan after adding tinsel

Late this afternoon I revisited Brandon’s gravesite and the Christmas tree. I was afraid the tree may have made it through a severe storm, which had swept through our area two nights ago. I thought it likely it had been knocked down or blown away, but there it stood little worse for wear! I had to reinsert several stakes in the stand to hold it in place, and a number of ornaments needed to be picked off the ground and rehung and others needed rearranging. Surprisingly, much of the tinsel was intact! And the lights went on as scheduled at 4:45 p.m.

I tried a chorus of “O Christmas Tree” before I left before the gates closed, but I don’t think I’ll ever make it to the end of that song. Ditto for “Silent Night” or even “Santa Claus is Coming to Town.” Maybe I should simply settle for “Cry Me a River”?

Prayer and positive thought gratefully accepted

And so it begins. Holiday season 2014. All children and families will be in from far and near, and will arrive here for Thanksgiving dinner in a few hours. 

Brandon preparing Thanksgiving dinner

I can do Thanksgiving, although Thanksgiving was a favorite holiday of Brandon, who loved to cook. It is Friday I fear. Friday morning we are to have family photos taken - the first family photos without Brandon physically in the picture. And I am so very scared. I don't know how to do this. I don't know how to be brave. I miss him. It won't be "right" without his physical presence. 

Sure, we have symbols to include in photos. Symbols aren't worth sh#t, but I think they sure beat no symbols at all.

Please send positive thoughts and prayers through cyberspace for me and our family this Friday morning (Eastern standard time). I want, I need these photos but I need your energy to get me through this. Our last family photo shoot - by Jenny of Fresh View Studio, the same photographer -  took place merely three weeks before Brandon's passing. I can't begin to tell you how many tears have been shed just thinking about this session without him. I want this. I need these family photos. But I'm so scared. 

A blessed Thanksgiving to you all. Hug each other and let each know how thankful you are to have each in your life.