In November of 2001, our father lost a local election by less than 300 votes.  There were reasons for the loss that were beyond his control, including the occurrence of September 11^th.  We had absolutely no idea that the biggest reason of all was that he had a brain tumor.  After the election, indeed even at times during the campaign, our father seemed disinterested, disengaged, tired, some might say depressed.  He lacked his usual high energy, his enthusiasm for life’s little gifts, his otherwise keen focus on a task at hand no matter how small.  After the discovery of the brain tumor and in thinking about this time frame after the election, our family doctor noted that our Dad had lost his usual twinkle in his eye.  He was going through all the motions but he was not quite himself—a pretty nebulous thing to say about someone but, in this case, true.  These changes, though subtle and explicable (loss of the election and the recent loss of his mother) did not go unnoticed.  Our mother was worried and so were we all.  The watching and the worrying continued.  How do you tell your father that you think he’s depressed?  How do you make this situation better?  How were we ever to know that there was actually something physically wrong with him when he was the overall picture of health? 

Finally, in January of 2002, Dad explained to Mom that he thought that there was something wrong but that he could not put his finger on it.  He could not point to any area of the body.  He didn’t have headaches; he didn’t have seizures; he had no physical ailments whatsoever.  He just felt that something must be wrong and that he should visit his doctor.  Neither of them had any idea how to even explain it to a doctor for the purpose of getting a diagnosis.  It was so intangible.

We’ll never know how much he silently suffered with any change in cognitive ability or personality trait.  Was he surprised at his inability to concentrate for long period of time if that were even the case?  Was he shocked at his own lack of enthusiasm for life’s wonderful events?  What must it have been like for him?  He kept much of this to himself because that was the way he was—never one to complain or burden anyone with anything.  And we’re sure now that he never wanted to worry any of us even though he had to have been worried himself; he felt it was his job to worry about us and to protect us.  Moreover, he truly was not himself for the tumor had begun to take him away from us and neither he, nor we, had any idea what was happening. 

On the Friday before Martin Luther King Jr. Weekend, Dad went to his internist, who after a thorough, clean examination, ordered a cat scan of his brain (though even he later explained that he had no concrete reason to be thinking brain tumor).  That weekend will live in our memory forever.  Our world as we knew it was shattered.  The CT scan confirmed a large mass in our father’s left frontal lobe.  The MRI strongly hinted that it was a glioblastoma multiforme or GBM IV, the most deadly form of brain cancer, indeed, some would argue the most deadly form of cancer.  In any case, the mass needed to be removed and it needed to be removed quickly if it were deemed operable.

We had no time to waste.  The doctors warned us that my father should not drive because he could suffer a seizure or aneurysm at any time.  My father’s internist immediately placed him on decadron, a steroid, to reduce any brain swelling, and dilantin, a medication to prevent seizures.  He quickly got us in to see a local neurologist who could confirm the grim prospects from the CT scan and MRI but remarked that my father performed amazingly well on both his physical and psychological tests for someone with a brain tumor.  We hastened to contact the experts in the field knowing that there were so many decisions that had to be made quickly. 

First, we visited several neurosurgeons to help us determine whether the brain tumor was operable and indeed, whether it was even a brain tumor, for there was a small chance that it was a brain abscess—best case scenario; (there was also a 1% chance that the mass was the result of lymphoma rather than a primary brain tumor, again a better case scenario).  Fortunately, the neurosurgeons agreed that the mass was in a good spot in that removal of it would not greatly affect healthy brain tissue.  However, they stressed the urgency and recommended removal—a complete resection of the tumor by craniotomy-- as soon as we could get on the hospital calendar. 

We then needed to decide if the doctors were to perform the craniotomy while my father was under general anesthesia or while he was awake.  Because my father was uncomfortable with the idea of being awake while a doctor was operating on his brain, we decided on the craniotomy under general anesthesia.  There are pros and cons to both as we understood it and in the end we think it comes down to personal preference. 

Surgery was scheduled for January 30, 2002.  The days preceding the surgery were hectic and emotionally difficult.  We felt there was so much to do to get things in order but we also did not want our father to feel that we were planning for his death even though, given the risks of brain surgery, we knew that that was a distinct possibility.  We also knew that there was a chance that he could come out of surgery with significant deficits leaving him unable to make decisions or even to care for himself on the most basic level. 

Fortunately, he came through the craniotomy with flying colors; the brain tumor (3 inches in diameter in his left frontal lobe—near the speech area, and the motor strip, but mostly affecting the personality area of the brain) was fully resected, meaning all visible tumor was removed.  In fact, he was released only a day and a half later directly from ICU.  He looked great despite the six inch incision at his front hairline and the accompanying removal of hair.  He was nervous but mostly in good spirits.  He was surrounded by immediate family including his five grandchildren who adored their “Pop”. 

However, as pathology would confirm a week later, the doctors explained that the tumor had all the characteristics of a glioblastoma multiforme, and such tumors are characterized by tentacle-like cell structures that infiltrate healthy brain tissue making it impossible to fully eradicate the cancer or cancerous cells from the brain.  On the day of the surgery, after what seemed like an eternity, during which time we did not even know if our father had made it through surgery, our entire family was asked to gather in a private room off the general waiting area to learn this news and to be given the opportunity to react with questions.  My father was, of course, not present as he was still in recovery.  We were not surprised given what we had read and what the scans had already suggested but we were still stunned by the nightmare that had befallen us.  The questions were desperate and the answers were absolutely dismal.  The words “Very few people beat this kind of tumor” reverberated and we had no idea what an understatement that even was and how it pales against the devastation wrought by the diagnosis of a brain tumor.  To this day, sitting in that tiny, fluorescent-lit room still seems surreal.  And it was only one of many such moments in our journey into the world of brain tumors.

Our frantic search for information and for a plan of action was still very much underway. We had done what had to be done as quickly as we could—the full resection of the tumor.  Now the risk of stroke, seizure, aneurysm or other disaster had diminished but was still very real.  It was accompanied by other risks like infection setting in after surgery etc.  Our father was still in significant danger and we needed a plan.  Never before had the internet become so invaluable to us.  In a matter of days we had read about and corresponded with hundreds of people who had faced or were facing our exact circumstances.  The bond is instant and critical because the battle is so fierce.  These internet friends on brain tumor lists and other websites designed to reach out to those affected by brain tumors had so much to share and they offered hope in a world where very little could be found otherwise.  They helped so much by offering advice about how to proceed and who to contact.  They were there no matter what hour to offer encouragement.  They had been there or were currently there and they knew that you could not face this monster alone.  Our experience in this regard stands in sharp contrast to that of others who were afflicted by this terrible disease and their families in the days before the internet who were not able to lean on these sources.  This internet community was one of the few rays of hope in the whole journey for us. 

From them we learned that there were options and that we needed to discuss them and implement them with a doctor called a neuro-oncologist and another doctor known as a radiologist.  (As one can imagine, the coordination of this effort coupled with the need to get it all covered by insurance was time-consuming and stressful).  We could opt for the standard course of treatment with local doctors who prescribed a course of radiation (about 5-6 weeks commencing 3 weeks after surgery) and then chemotherapy for as long as our father could tolerate it.  This standard course was not optimal as the results were almost always the same—8-12 months of life after diagnosis.  Others recommended chemotherapy concurrent with radiation explaining what they felt was the need to vary the course of treatment since the former was not the “magic bullet” needed to cure a brain tumor.  Others recommended bypassing the traditional forms of treatment and jumping right into clinical trials since standard treatment “failed” the vast majority of patients.

As we were trying to frame our options and our heads were spinning, we made contact with Dr. Henry Friedman at The Brain Tumor Center at Duke University and he was an inspiration and another ray of hope.  So many people in the brain tumor community, including our area doctors, recommended contacting them since they have an entire center dedicated to the treatment of brain tumors.  Dr. Friedman reviewed our father’s scans and recommended delaying the standard course of radiation to pursue a new treatment known as monoclonal antibodies.  It would require a second craniotomy to implant specially formulated antibodies into the tumor cavity to actually fight the cancerous cells.  We strongly considered it and were really leaning toward pursuing that course until our father made his fears known and they were valid ones.  He did not want to have to undergo a second surgery so soon after the first; he did not want to be away from home at a time like this; and he just was not comfortable being on the medical cutting edge.  In many ways, we think he was not willing to readily accept that his diagnosis was so terribly grave because he was a person of such great hope and faith and had never been sick a day in his life.  Even though we are sure that deep down he knew the reality of his diagnosis, he was not the kind of person who could be comfortable talking about, let alone being the subject of, innovative medicine.  He did not stick his head in the sand but he did want to pursue a more traditional form of treatment. 

This time was particularly difficult—the decisions, the turmoil.  As young adults in the technology age, any one of us could see the wisdom in trying something new since the more traditional forms of treatment were so ineffective.  But, we also knew our patient well, it was not any one of us and who knows what we really would have done in the same set of circumstances;  in the end we knew it had to be his decision and it was.  He opted for a more conservative approach but not the one that was standard practice.  He chose to do radiation concurrent with Temodar, a comparatively mild chemotherapy that has shown effectiveness against brain tumors.  And after radiation, he would begin a regimen of chemotherapies that would alternate Temodar, CCNU and VP-16 on a bi-monthly basis.  This treatment plan was to be supervised by Duke but administered by our local neuro-oncologist.  

Dad did extremely well in the three weeks following surgery and during the five or six weeks of radiation.  As he always had, he ate well, drank plenty of water and took the time to rest.  He had scheduled his radiation treatments each day at around lunch time so that he would still be able to continue his law practice with very little interruption.  He was religious about coming home from treatment having lunch and resting for thirty minutes or so.  It was not until the very end of radiation treatment that he mentioned feeling fatigued.  His appetite was good but his palette had changed.  Foods that he once enjoyed were no longer an option; he explained that he just didn’t have a taste for them anymore.  Of course, one of the most difficult and noticeable changes was the loss of his hair.  It was slow but steady and by the fourth week of radiation, my father was fitted for a hair piece that looked amazingly like the real thing.  Unfortunately though, it was a daily reminder of the greater loss we were experiencing and it bothered us all, especially our Dad.        

          During this time anyone from the outside looking in would not know that there was anything so dramatically different about our parents’ daily routine and that is the way our father wanted it.  He had always loved practicing law and being involved in his community and he did not want his life to change.  Fortunately, he was still able to do most everything he had done prior to diagnosis but, as any of us can only imagine, from the date of diagnosis nothing was ever really the same as before. 

In May, 2002, we traveled to Duke with copies of our father’s first scan since the surgery, radiation and the commencement of chemotherapy.  We learned all too quickly that a brain tumor patient and his family live life from scan to scan no matter how they may try otherwise.  To say it is a difficult way to live is once again an understatement.  Fortunately the news was good.  There was no visible sign of tumor in the tumor cavity or otherwise and our father scored extremely high on the neuro-psychological tests which would have shown if there were any deficits resulting from surgery or tumor activity.  In fact, when the interviewer asked our father to name the American presidents in reverse chronological order, she actually had to tell him to stop after he named so many.

The next scan was scheduled for July so we all thought we had some time to relax a little and enjoy life more.  We celebrated our father’s 56^th birthday, Father’s Day and our parent’s 34^th wedding anniversary all in the same week in June.  Every day seemed bittersweet, trying to appreciate the time God had given us and yet knowing that each of those milestones and each ordinary day might be the last of its kind celebrated with our father on earth, and they were.

The July scan showed two spots that were some distance from the original tumor cavity.  They were small but they were there and we knew it was very bad news.  Any recurrence in cancer is serious but in brain cancer a recurrence usually signifies that as far as fighting the cancer is concerned, there is very little that can be done.  This is not always the case and we hoped for a miracle.  We immediately sought the opinions of the doctors.  We pursued the possibility of stereotactic radiosurgery or gamma knife surgery which would pinpoint radiation directly at the new tumor site.  Unfortunately, the consensus was that the new spots were too diffuse and were, therefore, not eligible for such treatment.  We were deflated.  Another possibility was to enter a clinical trial but again, our father did not have that in him.  As he was considering it however, he pursued another possibility which was to just stay the course of his chemo regimen (alternating Temodar, CCNU and VP-16 for two months at a time) and hope for the best. 

Up to this point, our father had only completed the Temodar and CCNU rounds and had very few unmanageable side effects from each.  VP-16 was in August and was a more potent and more difficult to administer chemo.  It was intravenous rather than oral and its side effects were more problematic.  Blood counts were taken each week to monitor our father’s condition.  All in all, he had done well with past bloodwork though each time the counts were much lower than what is considered normal for a healthy person.  This time around because there had been a recurrence, Tamoxifen and Celebrex had been added to his regimen in the hopes of slowing tumor growth.  All these drugs coupled with the very potent VP-16 resulted in drug-induced hepatitis at the end of August and early September.  He was hospitalized for a week.  After this hospitalization, our father’s decline became more noticeable.

He no longer worked full-time but rather, directed his practice from home.  He stayed close to home and did not have the energy to do a lot.  He seemed less hopeful and more worried and his body was giving him reason to worry.  One of the first and most noticeable changes was in his speech.  This most articulate, eloquent man often had to take time to search for the right word—a search that was instantaneous when he was well.  Occasionally, he used a word incorrectly and that would never have happened when he was well.  We also noticed slight cognitive changes.  For example, he would occasionally repeat himself or forget something that you had told him.  He was more concerned with writing things down and doing things to help himself remember.  Prior to his illness, we used to marvel at how he kept track of his busy life even without writing anything in a date book.    Some of the other changes were physical—his right side began to weaken such that driving became risky.  His charming smile was affected as his facial muscles became partially paralyzed.  All of this occurred slowly and painfully over the months from September, 2002 through April 2003.  With each month came a marked deterioration.  In October, he quietly admitted that all he wanted was to be able to attend his youngest son, Michael’s wedding in March.  We assured him that we would do the best we could.  However, by March of 2003 our father was mostly bed-ridden and unable to attend.  We knew that he would have been on stage playing his accordion together with my grandfather playing the fiddle if only he could have, as he had done at our other weddings.  We (most especially our Dad) were heartbroken.  We all knew the inevitable was coming and all we could do was survive day to day.   

There are other websites that chronicle the end stages of life and the end stages of this illness and they do so completely and professionally (see Links) so we won’t dwell on them here.  Suffice it to say that, as any caregiver or family member of a brain tumor patient can attest, there is very little that could have been more difficult to witness or more difficult to come to terms with.  After a long and fierce battle, with an unwillingness to cease fighting until the very end, our father’s body fell in battle on April 10, 2003. However, the soul, the personality, the memory and the legacy of this wonderful man triumphed that same day for they grew and continue to grow stronger for having waged the war.

We have undertaken this memorial and the attendant fundraisers not just because we have lost our father at such a young age but because of the way in which we lost him.  We watched our maternal grandmother die of this exact illness from 1982 through 1984 at the age of 76 and in the nearly twenty years that separate her death from our father’s, little real progress has been made against this awful disease.  We have become part of an unfortunately growing community of those affected by brain tumors—which strike not only adults but so many children as well. 

For our father, and for all those affected by brain tumors we intend to continue the fight.  We have decided that the money we raise should be dedicated to research—to finding a cure for brain tumors and to finding a way to prevent brain tumors.  We cannot bring our father back physically but, perhaps by actively promoting awareness about brain tumors and the need for research funding, we can cherish his memory in a way that helps others.