We were getting ready to move. David had accepted a position with Wang Computers (which soon became absorbed by Eastman Software) up in Boston. We had put a contract on a blue, boxy house with a cool address ... 44 Lamplighter Lane ... and were desperately trying to sell our quaint little townhouse in Virginia. It wasn't selling. The summer of 1996 was not a good market for sellers. But we were going on faith that our home would sell because we were tired of living apart, with David commuting every other weekend and two week separations. The thing is, he wasn't "right." He was experiencing headaches for the first time in his life -- bad ones -- and he was strangely emotional and his normal confidence was waning. I knew something was wrong ... I even dared to voice the words "brain tumor." How ridiculous, right? Even our family doctor suggested it was just stress resulting in tension headaches -- but that if they continued after our move, David should see a doctor. I was still uneasy. And one night that he was home -- spent banging his head on the bed in pain intermingled with taking care of our very ill daughter -- changing sheets and bathing her -- ended in a morning marked by his own nausea and imbalance -- a fall. I called the ambulance.
Thankfully, David had a big seizure in the ER that morning. If he had not, they would have sent him home -- blaming the nausea and dizziness on too many pain meds. He would have gone into respiratory failure and died at home that very day. Instead, he seized -- they took CT scans and found a large brain tumor -- baseball sized -- and, in respiratory distress, was intubated and given paralytics to prepare him for a life flight to the medical center of my choice. I watched them move my husband out to the helicopter pad and was left standing there with my toddler on my hip -- nearly paralyzed myself -- facing a huge life event. The moving truck was coming the next day. The curtains were down; the house ready to be packed-up. But my husband was being flown to another hospital for emergency brain surgery. I couldn't possibly drive, so called a dear family friend to come be with me -- transport me -- hold me up.
Imagine scaredy-cat me dealing with a distant, arrogant young brain surgeon -- asking what he was going to do before signing the consent forms. He looked at me like I was a silly little girl ... don't question me, just sign. Geez! My mother's heart surgeon had very gently and patiently explained her entire heart procedure. Can't this dude offer me a little of that? No. But he did offer me the most important tid bit of information: Your husband will survive the surgery. Okay, then! Do it. Do it before he successfully comes-to and pulls out his intubation tubes! Stubborn man -- metabolizing the paralytics faster than most -- was it Ativan? That fighter spirit was really crucial for the rest of his journey, but on that day, he needed to just stay unconscious and safely intubated. How alarming it was to helplessly watch him wake enough to fight the respirator. But the next day, he did survive the surgery. He woke up confused, but not in too much pain. He got up and shaved the rest of his head and called me, asking me where I was. David. He was such an alpha. He's ruined me forever.
Soon after that first emergent surgery, we found the Brain Tumor Center at Duke and a pair of amazing doctors. After the first operation and a round of experimental protocol (David was #7 in a clinical trial for a drug now commonly used in treating brain tumors), they found a second tumor, nearly as large as the first. The thinking was that it had always been there, but simply not detected in the scans. Curiously, many years later, reading a radiologist's post-surgical report that said there was a so many centimeter tumor in his head, I realized that he had been correct. We scoffed (we being the medical folks) that the radiologist was seeing the "black hole" left after the excision of that monster tumor -- but, in actuality, he was probably reporting that second tumor. Go figure ... Anyway, when it was finally detected, of course it had to come out. Just four months after the first surgery, David had to have a second full-blown craniotomy. Thankfully, they could use the same bone flap.
Craniotomy is any bony opening that is cut into the skull. A section of skull, called a bone flap, is removed to access the brain underneath. There are many types of craniotomies, which are named according to the area of skull to be removed. Typically the bone flap is replaced. At least I thought that was good ... not having to make a new cut into his head ... but following this second surgery -- over Thanksgiving -- he experienced a great deal of pain. During that hospital stay, David exhibited the beginning of his "bad" behavior. He nearly broke the bed, kicking the footboard in response to his pain. I had to learn fast how to be an advocate -- to fight for pain meds, among other things. Subsequent hospitalizations for biopsies resulted in other such "bad" behavior
. He discharged himself once -- just got up and walked out because he grew weary of the processs and a snotty nurse. Though making me quite uncomfortable on several levels, I learned from that act. I don't take much crap these days. Thanks, David.
Duke Medical Center replaced my dread (associated with hospitals) with hope. That's their slogan, by the way, "At Duke,There is Hope." But it was true. At Duke we found a doctor who wanted to save David's life. Who dismissed [what he called] the "nihilism" of the standard protocol for treating grade IV brain tumors -- in David's case, GBM IV -- Glioblastoma Multiforme -- Generally considered to be a death sentence. Henry, along with Allan, formed a formidable team fighting for David's life. And they won that fight for 14 years. After nearly destroying a bed, he returned for an experimental nuclear protocol and was isolated in a room there for a week. He nearly went mad. Then he had an awake biopsy.
This experience did not live-up to the excellence anticipated at Duke, however. A couple of stupid residents bungled the prep. First, they basically performed a sort of medieval torture on David -- injecting four doses of lidocaine in four places on his head, pushing the syringe too quickly and thereby creating golfball sized swelling into which they immediately began to SCREW a halo into his skull.
These idiots didn't even wait for the lidocaine to take effect or for the swelling to subside. They just barrelled on into the procedure. I sure wish I had been the woman I am today. I would have stepped-in and stopped the agony. Instead, all I could do was lock eyes with David -- witnessing a suffering too unbearable to explain. This image of a halo isn't David ... but gives you an idea of what it looks like. They use it to yank your head into a frame in an MRI machine and then to immobilize the head during surgery. Somehow I made it all the way to pre-op, where Allan suggested that since I had made it that far, should I not just come on into the surgery? You see, these dummies had carelessly attached the halo while David was in his street clothes. They had to cut-off a $40 Russell DUKE crossweave sweatshirt. (We didn't keep that shirt ...) David's biopsy was an awake one -- the first of two. It was no fun to hear a drill going into his head and then hear another idiot resident say, "Oops." Unbelievable. But we still believed we were where we needed to be. And we were.
David had at least one other awake biopsy (a better, more humane halo event) and a plethora of MRIs and PET scans at Duke Hospital. Up until late 2008, most of our experiences there were of hope and survival -- of healing and recovery -- beating the "beast," as David called it. It was a happy place. He lived for many years free of treatment. I really believed he was "cured," though that word is never used in the same sentence as Glioblastoma ... Even his doctors believed he may have been the exception to the rule.
Then, following a curious tour in England and Sweden where he experienced a queer inability to carry a tune properly and a failure to recover from jet-lag, the recurrence was diagnosed -- I think it was the fall of 2008. I believed that day would never come; David admitted that he feared it always would. When these strange symptoms became blatant, we got an MRI here at home -- and a consult with David's local neuro-oncologist presented us with two options. 1) Travel immediately to Duke for surgery to remove an 8mm cyst; or 2) Let one of our surgeons excise it. We quickly packed and went that very evening to Duke -- entering, for the first time ever, through the Emergency Department. David was never the same after this surgery. This was also our kids' first real experience with the emergent nature of David's illness.
Now the ugly part. I wonder if I can even remember everything -- it was so traumatic.
We drove to Duke that night -- the four of us. We turned onto Trent Drive and found the Emergency Room, as directed -- and went in that way. Surprisingly, admission was swift. They had been expecting us. Somewhere in and among all of this I have memories of sitting in the Duke Hospital lobby waiting and waiting and waiting for something -- admission? surgical something? I just don't know. Somehow, the mind protects us from some of the most traumatic stuff, you know? Anyway, I do know that I was there at least twice, waiting ... and trying to keep David calm amidst the ridiculous waiting. The last time I believe he mostly slept. That's how ill he was. He'd kill me for saying that publicly. Sorry.
What did we do?! He had a cyst -- a large one -- 8mm. It was attached to tumor, of course, but David only heard "cyst" and "cyst" isn't tumor. David had the cyst removed. His recovery was challenging. At first he seemed fine, but then things became different. He was very emotional. This was the time when he wrote his 40 days of songs and poems. He isolated himself and wrote. Somehow, with patience and time, he made it through weeks of testing for nuclear medicine. On Christmas Eve, he had the big administration of the radioactive crap. They sent him home! Can you imagine? Christmas morning, we had a "normal" time -- exchanging gifts with our fireplace warming us. Then the headache and the nausea hit -- and were unrelenting. We spent the remainder of Christmas Day in the emergency room -- for ten hours -- and then David was admitted to the University of Virginia Medical Center for a week's stay to determine what had gone wrong. Had he developed Meningitis from all the flow tests? Was he having an adverse reaction to the nuclear medicine? They never figured it out. The day I brought him home, our 21 year old calico could not stand. I nursed that cat through the night -- the cat who had licked my tears and not attacked my babies -- and took her to be put-down the next day. What had my life become?! David dug her grave. Too much. It was all too much.
David was a survivor. He insisted on taking the family to Italy on his hard-earned frequent flyer miles -- and we had an amazing trip. We had gone as a very poor couple back in 1990, unable to afford a gondola ride or any leather goods -- but managed to fulfill both dreams this time around. Rome on Palm Sunday, 2009 and Easter in Venice ... a true gift that our kids will never forget. Somehow he walked those cities, having just finished a round of chemo the week before. His spirit truly was amazing. With the treatments, he was able to fend-off the beast for another year. The months begin to blur for me after that. Somewhere in and among all of that is the really big and awful and horrible and nightmarish event. I have to write about it. I have to tell this story. I'm sorry, in advance.
Was it after all of this that David's charisma evoked a response from his doctors that his increasing inability to walk well was a result of an imbalance of spinal fluid? If David had known what he was inviting then, he would have abandoned the entire hypothesis? In order to determine whether or not there was an imbalance (surplus) of spinal fluid causing his problems, they needed to analyze it. What follows is the most horrible event that I have ever witnessed and what has caused me to delay writing about it.
Spinal Tap -- a funny British movie -- a spoof on English rock bands of the 70's. We loved it. Ha. No. David had two spinal taps. One was that Christmas following his second experience with nuclear medicine. Thankfully, I believe he was unconscious for that test. This second time -- God have mercy. They needed to find out if he had a surplus of spinal fluid or something causing his imbalance. David was desperate for any explanation other than TUMOR. If I knew then what I knew now ... They came in and tortured him. They jammed that huge needle into his spine. He was in excruciating pain and I was POWERLESS to stop it. My soul left my body and witnessed me slump in impotency and my spirit left me. A part of me died that day. The horrifying "test" was negative and left my husband catatonic. They made me take him home that day. Sometimes healthcare is little more than medieval drawing and quartering. I was a changed person.
Then there was more tumor ... and the option of yet another cranitomy to remove another cyst and tumor from David's frontal lobe --stuff was growing in his frontal lobe ... damn. Okay, I need to finish this ... this sordid tale of David's last few months. I need to cleanse myself of this horror and I ask you to stay with me through this. I'm sorry. How do people survive this stuff? I ask the question and answer it all at once: LOVE AND PRAYER ... and God's unbelievable grace and mercy. The surgery that I realized was just a time-stealer, but David believed to be a true treatment...
I think it was in May of 2010 -- I can't quite remember the date. Our daughter was going to graduate from high school on or around June 6 or something like that. I can't even remember my daughter's graduation date! Dang. Anyway, during the surgical consult with Allan regarding David's prognosis he asked what "big event" or "important event" was coming up. I immediately said that our daughter's high school graduation approached. He heard me. David did not. By that point, all David could think of was survival -- the next concert -- getting back on the stage. His personality and judgement had been hijacked. I was at a loss.
Thinking back, I think, perhaps, that we should have denied treatment -- said no to any further surgery -- but David wasn't "there." He wanted to LIVE. He wanted to defeat the "beast." Sometimes I believe that I failed him. Sometimes I believe that I should have been more courageous and stopped the whole thing. Realistically, no ... I needed to defer to David. He was the stupid freaking poster boy of Hope. To die was to fail. God,why did you put us in that position?
There are so many nuances through those days that I will never share publicly. Anyone who has walked the walk with a brain tumor survivor through their last days -- and every brain tumor is different so every single brain cancer survivor's last days are UNIQUE, making a comaraderie in this realm impossible -- understands. Some of this stuff is very private ... however ... frontal lobe surgery ...
If you have no understanding of the frontal lobe, stop reading now and wikipedia it. Okay, I did it for you:
The executive functions of the frontal lobes involve the ability to recognize future consequences resulting from current actions, to choose between good and bad actions (or better and best), override and suppress socially unacceptable responses, and determine similarities and differences between things or events. The frontal lobes also play an important part in retaining longer term memories which are not task-based. These are often memories associated with emotions derived from input from the brain's limbic system. The frontal lobe modifies those emotions to generally fit socially acceptable norms.
Allan told us that recovery would be long and difficult and, possibly, incomplete. David didn't hear any of that. He heard that he would be back on stage. I heard: It might buy him time to see his daughter graduate. He spent a few weeks in a rehabilitation hospital. That time was marked by intense duress -- heartbreak for those who loved him -- disappointment and excruciating frustration for him -- and very trying days for his caregivers. After a couple weeks, his brain, upon healing in its miraculous way, provided David the wear-with-all to fight back -- to walk. To gain strength. To acquire mobility. He walked. He walked up and down stairs. He managed to equalize his moods and his responses. They sent him home.
Though I would never rob David of his HOPE, sometimes -- dark times -- honest times -- I really believe that we should have NOT had that surgery. Because he was receiving a quasi-chemo, Avastin, his ability to heal was grossly compromised. His incision didn't heal. We were wary of any wound. He was experiencing bone loss and tooth loss due to the long-term effects of the freaking treatment. If cancer doesn't kill you, the treatment might! and does, for many a soul! Anyway ... David's incision wouldn't heal. I get very blurry with this last stuff ... but I remember an emergency appointment with a neuro-surgeon at UVA -- a kind, young, handsome guy who really didn't get it. Yeh, the incision wasn't healing. THE INCISION WASN'T HEALING. So back to Duke.
I can't remember the order of events. I might be able to piece together the story if I were to go back and refer to the insurance claims. Don't make me do that ... but David had freaking plastic surgery to help with this unhealed incision. Why in the hell did they put him through that?!? Why in the hell did I permit them to ... is the big question.
I can't recall the series of events -- really, I can't. I'm an incredibly strong person (not bragging, just saying) but all of that trauma has to dissipate to permit perseverance! David came home and returned to his stubborn pattern of brewing coffee and insisting on independence when independence was futile, causing his caregivers -- those who loved him -- greater duress and heartbreak. I knew that hospitalization -- the freaking end -- wasn't far-off. I had things to accomplish: He had insisted on and planned a graduation trip for our daughter to Paris -- with me as her escort, of course -- not knowing the concern that it caused me to leave him with our son. Somehow the two of them got through that week (God bless my son forever) and propelled us to the advent of our daughter's departure for college.
Once again, I found myself in a position where I needed to leave David to accomplish something important. This time it was taking our daughter to college. Ideally, two parents do that. Sadly, he was unable physically and mentally.
At home, his ability to stand -- to walk -- was intermittent. He refused to accept his limitations, so often fell -- unable to get up -- and was angry about it. Defiant. His fighting spirit shrouded reality and made our lives fearful and frightening and frustrating. My sweet son picked his father up countless times -- lovingly and patiently helping him back into a place of comfort and security -- his chair. Life was very tenous and difficult.
The morning of our departure, David was strangely "himself." He was very excited about her new adventure and insisted that we text him updates frequently throughout our long trip north and orientation. I texted him every hour or so -- but was met by silence. Can you imagine my dread? Can you imagine my concern for my husband and my 16 year old son? I had to consciously turn my mind off to get through the days.
When I returned home from delivering our precious child to college, I found my husband a physical wreck. I'm not even sure what the emotional/mental status of my son was -- only that he was a saint and that I would never forget his loving care of his father through those trying days. Trying days ... a gross understatement. It would be a glaring oversight not to state that his experience made his heart and soul even more beautiful and precious than before. My son is awesome.
Somehow David convinced me not to take him to the emergency room until the next day, but I knew that he was in trouble. Both of his legs were terribly swollen -- an outward sign of DVT for which he was already being treated -- and he could not stand. When we arrived at the ER the next morning, rather than fighting it and being combative with the doctors and nurses, he was calm -- at peace -- very un-David. This was a strong sign that he was not "right." He was congenial during the long, drawn-out emergency room process and didn't fight admission. This drastic change in personality spoke volumes to me -- and at the same time, was a comfort. I was tired of the fighting and he wasn't fighting. It was sad and comforting all at once.
That was the beginning of David's last hospital stay. He spent about a week at the University of Virginia Medical Center without his normal angst -- without anger, fighting, disgust, frustration ... just a calm, affable, gentle spirit. I believe that was God's gift to ME.
David's doctors at Duke told me that the tumors had spread into the ventricles. Evidently, that's really bad. I was told finally and honestly that he had about 3-6 weeks ... and he lived another 5. I was also told, however, that he would gradually get more and more sleepy until he just didn't wake -- that he wouldn't eat or drink -- and he would die. David didn't do that.
I was confronted with the horrifying ordeal of deciding how he was to live his last days. Thank God, our Hospice House had an opening so that David could spend his last days in comfort with me by his side as his wife and not his nurse -- where his son could sleep at night not fearing that his father was trying to walk and then falling. (Yeh, life at home had been pretty daunting. Sometimes we were simply unable to get David up off of the floor.) Hospice House was a GIFT. David's last day in the hospital EVER was one of amazingly mixed emotion for me. It was a joy that he was leaving the hospital, even though ONE wonderful nurse had cared for his spirit, as well as his body, was with us through this big transition ... Beth. Thank you, Beth ... and thank you to a beautifully gentle ambulance crew who came to transport David to his last "home." David could no longer stand on his own, but thought he could. He affably attempted to assist them in their task, which was so lovely and very sad ... then transitioned into a more fearful place -- one that I was ineffective in assuaging. My heart broke as they closed the doors of that ambulance that transported him to the Hospice House -- and, since that day, any time I find myself following an ambulance, my heart does somersaults.
How do we survive these events in our lives? How do we wake up the next day? How do we go on?
The prayers of many loving saints ... and the unfailing grace of God.
