The Husband - Wife Tumor Twin's Story
Thursday, Nov 17, 2005
We visited Dr. Carlos David at Lahey Clinic today in Burlington, MA. Dr. David resected my brain tumor. I had seen him Monday on a routine follow-up. He was quite surprised that I had made an emergency appointment with him in the same week.
Our local imaging center had given me a CD with the CAT scans of Barbara's brain to bring to Lahey. After Dr. David looked at the scans he gave Barbara the standard neurological exam that he had given me many times. That is to check to see that pupils are functioning and of equal size, peripheral vision, memory and some bilateral symmetry tests of facial muscles, tongue, etc. Barbara failed several of the tests which indicates that the tumor is causing some brain swelling and hydrocephalus.
The tumor is very large. It is in the right lobe and compressing both sides of the brain. Barbara has lost function and feeling in her left hand. Because her speech has not been affected, he determined that her speech center is in the left hemisphere, otherwise she'd be having difficulty talking. She has lost some vision.
Decadron has been prescribed to reduce the brain swelling. Surgery is scheduled for Nov 30. We'll be back at Lahey tomorrow for an MRI.
Dr. David cautiously offered that it looked like a primary brain tumor and an astrocytoma. This, of course, is pure speculation. Nothing can be determined until the tumor is removed. We agreed that a biopsy is not necessary as that tumor has to be de-bulked anyway. A biopsy just adds risk.
November 26, 2005
Hi all,
Barbara has improved markedly. She's still very week, but she was able to take her first meal today. No problems swallowing and her speech is much better. She's in good spirits and has a sense of humor. Her left side is going to take some time to recover. She can't lift her left arm, but her left leg responds well. She hasn't yet tried to walk though. Barbara is left handed and a talented artist so I foresee some difficult times ahead as she tries to cope with the left side deficit. I learned that Barb had a grand mal seizure after surgery. The gash and bump on her forehead is still a mystery, but that's of no consequence. The difference in her condition today vs. yesterday is like night and day. Very encouraging. Thank you again all for your support and prayers.
Steve Cox, ependymoma guy
H/O Barbara, oligodendroglioma gal
ps: I have her CT scan pictures on my computer of Barb's tumor. If I can figure out how to capture one as a jpg file, I'll email it to anyone interested.
December 2, 2005
Hi All,
This morning Barbara was moved from Lahey Clinic to Northeast Rehab Hospital in Salem, New Hampshire. Coincidentally, she's in the same room I was in. She's much closer to home which makes it easier for everyone to visit her. Barbara is now 'unplugged.' No more IVs, tubes, or wires. She's noticeably stronger, and her voice is near normal. She still has deficits on the left side with her hand, arm, leg and eyesight, but she's gaining more control over these everyday. Tomorrow she starts physical therapy. Next Friday she goes back to Lahey to meet with a group of brain tumor specialists. I suspect they will discuss her prognosis and whether or not she will need radiation and/or chemo. In the meantime, she'll be learning to walk again. I do have the capability to email a CT scan picture of her tumor. If anyone is interested, just send me an email.
Steve Cox
Husband of Barbara
Brain tumor twins
February 24, 2006
Two years has passed since the surgery that removed an ependymoma wrapped around my brainstem. By most standards it should be a celebrated victory. Alas, it�s bitter sweet at best. February 24 represents two milestones for us. The second one being the day my wife Barbara has her last radiation treatment. Two years, or even 6 months ago I thought I�d reach this milestone with retrospect and renewed strength. It never crossed my mind, or even slightly drifted past my imagination that I would become the caregiver to my wife. Last November the second nightmare of our life happened when Barbara was diagnosed with a brain tumor. Hers is a tongue-twisting grade 3 anaplastic oligodendroglioma. These two brain tumors have at least enriched my vocabulary. So what happens next? We need some good luck for a change. I still buy lottery tickets, and I'm being patient. When is Oprah going to call?
The neurosurgeon, who I credit with having saved both of our lives, said Barbara's tumor was as big as his fist. His only comment about the both of us having brain tumors was, �it�s bizarre�. I suppose there's no medical term for it. For Barbara, the prognosis is still unknown. Radiation has taken its toll. I'm real glad that I had the choice to avoid radiation for myself. Barbara will probably continue with a regiment of chemo (Temodar) for months. She's still much too sick to resume a normal life, whatever that is. For me, I'm too busy to feel sorry for us, I'm too tired to do everything that I should be doing, and I don't have the energy to be angry. All I can do is wait and see what happens next. Nothing will surprise me.
February 25, 2006
Wow. I�m having a real bad day. It ranks right down there as one of the worst. And it�s only 8:23 AM on February 25, 06. Writing is one way for me to make myself feel better. And I can organize my thoughts and document them. I have a killer headache right now. This could be a long story, so, like with the Olympic coverage, tune out now if you don�t want to hear the score.
You are all my imaginary cyber friends. Not really, but I can share my very personal trials and tribulations with you because this is not real. This can�t be happening to my family. My headache is getting worse.
A few days ago I came down with some sort of viral malaise. A cold or the flu or something. It has made me feel very weak. My lungs fill up at nighttime. I have the chills. I hack and cough and haven�t slept much. My balance is horrible, and I�ve passed out a few times. It�s only 8:30 in the morning and I�ve already had a bad day.
Some of you have sent me private notes telling me I should write a book about a husband and wife both trying to survive brain tumors. I may do it. Last night I decide that I�m gunna try to find a pocket size dictation machine to carry around to capture my thoughts.
Many of my thoughts arrive in my head at night when I can�t sleep. I should capture them on a memory chip with a voice recorder.
I have always wanted to write a book, and I had even picked a topic some time ago. It wasn�t a fictitious story about a husband and wife who have brain tumors. I say it must be fictitious because it can�t be true. We still can�t even believe this is happening to us.
Ok, I hope I�ve made you curious about the other topic I was going to write about. This one is easy to believe and is in fact true. It�s about two young long-hairs who hitchhiked from Topsfield, Massachusetts to Colorado and back in the late 60�s. A good friend and I wanted to go mountain climbing in the Rocky Mountains. If you�re old enough to have been around in those days, you know what a different world it was. The trip was an adventure worthy of becoming a Monday night movie. Maybe not. That�s enough of that. Back to the other story.
I still have a headache.
Yesterday, February 24, as some of you already know, was an anniversary of sorts. My wife, Barbara, had her last course of radiation and it also marked exactly two years from my own 9 hours of brain surgery.
The hospital where Barb gets the radiation treatments is an easy 10-mile ride thru mostly New Hampshire back roads. We have a lot of good friends who have helped with driving so I wouldn�t have to drive her for the entire six weeks. These friends have supported us through all of this. Some of them know cancer first hand and are dealing with their own problems.
Yesterday I drove. Barb was excited that she has passed this milestone. No more radiation. Her last day. It was a time to reflect, and a time to step back and look at the big picture. This ordeal may be far from over.
In the hospital there�s a ship�s bell that sounds when someone has their final radiation treatment. It�s a ceremonial gesture that each of the radiation patients (and their spouses) likes to hear. Of course, Barb rang the bell. They also gave her a diploma and the mask that held her head still while they used surgical precision to blast the tumor with photons.
We soon left, but not before we said goodbye to the staff and some of the cancer patients. We are lucky to live near this hospital and many other leading hospitals in the Boston area.
We were feeling pretty good, in relative terms. You know what I mean. The drive home was no different than any other. The wind was blowing and there were a few rogue snowflakes hitting the windshield. Typical New Hampshire weather.
Barbara is a computer wiz. She works for the local school system and maintains their desktops and laptops. When we arrived home, she checked her mail as usual. This was yesterday morning. Barbara learned that her aunt had died at about dawn.
The news came to my attention when I heard Barb crying in the other room. She cried all day. By the end of the day, one of our lovely supporters gave Barbara a ticket to fly to Buffalo.
Barb grew up north of Buffalo on Lake Ontario. Most of her family is still there. Her deceased aunt lived next door to the house that Barb�s father built before Barb was born. Barb never knew her father. He was General McArthur�s driver in post war Japan, and spent time in Nagasaki and Hiroshima. A few years later he died of Hodgkin�s lymphoma. Go figure.
Newfane, NY is the quintessential American small town. It�s a place where you can raise a family and not lock your doors. It�s mostly a farming community with down-to-earth people.
Yesterday I tried to use my frequent flier miles to get a ticket to Buffalo, but it was too short of a notice to use them with USAir. The best rate I could get to buy one was about $500. Normally you couldn�t pay ME to fly to Buffalo this time of year.
Barb had an 8 AM flight. We didn�t sleep well last night. In between my coughing and her tears we spooned and talked most of the night.
Feeling as sick as I did this morning, I should have had someone else drive the 10 miles to the airport. On a good day, I�m dizzy and have poor balance. Today it was extreme. I had a hard time driving. The fact that I can�t feel my right foot doesn�t helps matters either. Barb can�t drive at all. She was still fighting back tears before we arrived.
I�ve done a lot of flying so I�m pretty savvy when it comes to airports. I dropped her off at the terminal and left her in a wheel chair and with a Sky Cap while I parked the car.
At check-in, our nephew�s wife happened to be behind the counter. She and my nephew, Eric, work at the airport. Yesterday, I had thought about arriving at the airport with a packed bag and try to finagle my way to Buffalo with frequent flier miles again. If I had known that Anne would be at the counter I would have tried it.
My headache is still with me. It�s getting difficult to think and write.
After checking-in Barb�s luggage and getting me a gate pass, I pushed Barb in the wheel chair to the security checkpoint. The people behind us were a little perturbed that it took so long for us to clear the X-ray and metal detectors. It didn�t help that I had a pocketknife and a metal belt buckle. Did I say I was airport savvy? I guess it�s been a while since I have flown.
Pushing Barb�s wheel chair gave me something to control my balance with. I left her for a moment to stand in line for a cup of coffee. My cane must have known the way because I can�t remember how I got there. While standing in line I passed out and fell on the guy and his wife in front of me. Twice! I have no recollection of ordering coffee and carrying two cups back.
It�s getting hard for me to write. So I�ll try to end this chapter.
My nephew the baggage handler had heard that we were in the airport so he graciously joined us at the gate. His friend was the gate attendant so he gave Barb special treatment and helped her to the aircraft.
I headed home. I still didn�t feel well both physically and emotionally. I don�t like to admit it, but I cried the whole way back. I haven�t been this depressed in a long time.
Up to this point, I always had to be the one to console Barbara. God knows she needs tons of help. No one on earth deserves it more than her. I�m going to be spending the week alone waiting again for Oprah or Dialing-for-Dollars to call. Nah, Oprah wouldn�t believe our story. Maybe one of you should tell her it really is the truth.
I�m done for a while. I feel a little better, but not much.
Steve Cox with the brain tumor
h/o Barbara with the brain tumor.
She just called, she�s in Buffalo and it�s snowing hard where I am.
Not there. Go figure!
March 7, 2006
Barbara is back from her trip home. If anything, her aunt's death was fortuitously timed to be after Barb ended radiation. In retrospect, I should have planned a trip home for Barbara at the end of radiation anyway. Maybe it's good that I wasn't that smart. I would have probably escorted her and fallen sick en route.
The flu really hit me hard even though I did get vaccinated. These flu vaccinations are apparently very stain specific. Just my luck I guess. I'm still feeling the affects. My energy level is near an all time low and I haven't yet gained back the weight I lost. Maybe that's a good thing.
When I wrote that 'Bad Day' email, I was 'under the influence' of a nasty virus. In fact, it was a very bad day. Sometimes I get carried away and really spill my guts to you all. That email was a good example. It's sometimes hard for me not to get depressed these days.
Barb starts chemo again in a few weeks. This time she will be taking a much larger dose. Five days on, then a few weeks off. I'm not sure how long this lasts, but I know it will be for several months. The whole experience has been incredibly difficult for her. Not that it wouldn't be for any human being. She has good days and bad, but even the good days often include tears.
March 23, 2006
I just thought I'd post an update since I haven't done so in a while. Actually, things for us have slowed down and not much has changed in our lives. Barb will start chemo (Temodar)again next week. Double the dose of before. She's done with radiation and has no hair on the back of her head. Emotionally she's a wreck. Some days she just sits and cries. It breaks my heart. I feel so useless. On days when she's able to keep her mind of our predicament she's OK. Fortunately, that's how it is most days. It's hard for her though, because she can't walk without a four pronged stick, or when she walks into a wall on her blind side. It's hard not to be reminded. We still shake our heads and wonder how we got here. How did we get here anyway? I feel like we're really testing hard the vow of 'in sickness and in health.'
Most days she's OK. She reads a lot and sleeps a lot. She's always been a voracious reader. It's typical for her to read a few books every week. My brain and eyes don't allow me to do that. Too much reading and my brain starts to boil and my eyes catch on fire.
Neither of us are eager to learn the status of the remaining tumor. In a month or so she'll have an MRI so the doctors can see if all these magic potions and ray guns have had any affect. When I had an ependymoma, I read everything I could find. Now I've read everything I can find about these oligodendrogliomas. Barb doesn't want to know. I don't really want to tell her what I know. Ignorance is definitely bliss in this case. Not knowing equates to not worrying.
I read the posts here almost every evening when I'm too tired to do anything else. I have a lot to say, but just don't know how to put everything into words. So, I'll just ramble on. I know you don't mind. We all need to do it now and then. You're the best.
Steve Cox husband of Barbara.
No one ever told us it would be like this.
April 5, 2006
Our April 4th
There seems to be a lot of bad news within group lately. Barbara and I been living our own private hell as well. Some days are good, some bad. Yesterday, on balance, was one of those bad days. Barb and I were planning to fly to Arizona yesterday afternoon from Manchester, NH. I was a little worried about her ability to handle the travel. Barb was to be the maid of honor at her cousin's wedding.
Yesterday morning, before the flight, Barb had an appointment for an MRI. It would be the first MRI since she completed radiation and the first since right after surgery. The status of the tumor would be an indicator of her future here on Earth.
We were sitting in the MRI waiting room at a building a few blocks from the hospital engaging in small talk and going over the travel plans when Barb turned her head toward me with a distorted look on her face. Her jaw was out of position and began to quiver. I asked her if she was OK and got no response. I asked her again if she could talk and got no response. I knew right away what was happening.
The receptionist's desk was though a glass door in an adjacent room. I ran to across the waiting room, through the door, interrupted the receptionist and told her that I thought my wife was having a seizure. The receptionist said she would call 911. By the time I returned to Barbara, she was in a full seizure. She extended her arms and started shaking all over. I held her from falling to the floor.
Nurses began to pour from the receptionist's door like bees from an angry hive. One nurse helped me lower Barbara to the floor where she shook and jerked. He breathing was heavy and she started to foam at the mouth. Another nurse saw that I was in shock and she pulled me from the scene.
A few minutes later the ambulance and fire department arrived. We spent the next five hours in the emergency room. While we were there, they gave Barb a CT scan. It showed that the tumor had shrunk about 50%. We missed our flight.
April 11, 2006
Some people have asked for an update on Barbara. There have been some recent events that have added a chapter to the ongoing story. Here the update.
Barbara finished her first round of chemo (Temodar) a few weeks ago. She will be taking a higher dose of chemo in a few weeks and then again every few weeks for an indefinite period. It is an oral chemo and the side affects, so far, are limited to fatigue. She is also finished with her six week session of radiation and is waiting for her hair to grow back. The back of her head, about half of her skull, is bald. A head scarf hides it nicely.
Last week, as you may have heard, Barb had a grand mal seizure in the waiting room while waiting for her first MRI follow-up since the end of radiation. We were going to fly to Arizona later that day. We didn't go. While in the emergency room, they gave Barb a CT scan and a doctor commented that her tumor had shrunk about 50%. We were skeptical because we didn't understand what baseline he was comparing it to. He was not one of Barb's regular doctors and we did not know how he could have made such a comparison.
Barb's blood work-up showed that her Dilantin level (anti-seizure drug) had fallen to ineffective levels. She was also taking an antidepressant (Celexa a.k.a. citalopram) that her primary care physician had prescribed. That doctor thought that he may have made a grave mistake by combining Celexa with Dilantin and that the combination caused her seizure. Today we learned that this is not the case.
Barb finally had that MRI on Sunday. Today we met with her medical oncologist. He looked up Celexa and stated that it is not incompatible with Dilantin and did not cause the seizure. He had reviewed the MRI report and stated that the tumor had not changed in size. In his opinion, this was good news. No growth is good news, but not as good as a 50% reduction.
Barb's depression is quite apparent. It's common for us brain tumor people to have it. I know first hand. She's tired of being sick and wants to be normal again. I can relate to that also. So can all the brain tumor survivors I have copied on this email.
So that's it in a nutshell. Thank you all for your compassion and caring. It goes a long way. The two of us have been blessed to be in close families and to have true friends.
April 20:
A week ago today we met with Barbara's radiation oncologist to go over her latest MRI. This MRI was delayed because Barb had a grand mal seizure in the MRI waiting room the week before. We spent the afternoon in the ER instead of flying to her cousin's wedding in Arizona. While in the ER the ER doctor told us her tumor had shrunk 50%. The news sounded good, but we suspected something was amiss. How did this doctor have access to the correct baseline films to make a comparison? That and other things he said left us with a hint of a doubt. A few days later Barb's medical oncologist, after reading an incomplete report on the MRI, told us the tumor had remained unchanged. This after 6 weeks of radiation and two rounds of Temodar. This news was disappointing but it confirmed our suspicions about the comments made by the ER doc.
As I started to say, a week ago today we met with Barb's radiation oncologist. The news got even worse. She, the doc, told us that the radiation and chemo had not been effective. The tumor had grown. So now we've gone from 50% reductiion to a bigger tumor. Today, this morning, we met with the neurosurgeon at Lahey Clinic who had operated on both of our brain tumors. He confirmed the bad news. The tumor nodule that he left behind last time has grown as well as some other spots. He didn't offer much hope. More surgery would be risky and chemo and radiation are not his expertise. If he were to go after the part of the tumor he left behind last time, it may cause blindness. Barb already lost about a third of her sight from the previous surgery.
The tumor board at Lahey Clinic will meet again on April 28. We have to wait until then for their suggestions. I think, in the meantime, I'll try MGH or Dana Farber in Boston for another opinion. My emotions are just numb at this point. That's all for now.
April 25, 2006
Thank you for your concern. We're dealing with some serious issues here. Barb's tumor is still growing, even after a life time dose of radiation. She's still taking chemo, but the tumor seems to be beating everything we attack it with. I'm working the system and getting a second opinion at another hospital. We may find some answers Friday when the tumor board meets again at Lahey Clinic. Until then it's just wait and see. We have our fingers crossed. Barb has lost a lot of weight and is very depressed.
May 9, 2006
Hi all,
We were at Boston's Dana Farber Cancer Institute in Boston this last week to seek further treatment, because the radiation and chemo did not work. They recommended that we do not pursue more surgery, but instead go for some chemotherapy clinical trials that are available. They think the tumor may be a grade IV Glioblastoma Multiforme (a.k.a. GBM). They will make their re-diagnosis from the Lahey Clinic pathology slides within a few days. If it's a GBM, Barb has a certain set of chemo options to chose from. If it's an oligodendroglioma, Barb has a different set of chemo options to chose from. In any case, the tumor is growing and must be stopped. We'll know more later this week.
Hi All,
Barbara had an MRI yesterday, the second in four weeks. This time there was no change in the tumor. So it has stopped growing, at least for the four weeks. Therefore we have made the decision to not go with clinical chemo trials right now, but to continue with Temodar. Maybe we finally have this thing under control.
July 2, 2006
Hi All'
I need to write when I feel this way. I haven't said much lately. Here's the latest.
Some of you may remember that I have an aunt who was diagnosed with a GBM (Glioblastoma Multiforme) in mid 2004. I've mentioned her a couple of times in my emails, but not very often. She's not a blood relative. She is my father's brother's wife. Austrian by birth and upbringing. Her first symptom, like that of many of us, was a seizure. She's has several since. Interestingly, sometimes she can only speak German during a seizure. She's been fighting the post-surgery battle with radiation and Temodar. Things have gotten much worse lately and her time is now very short. She's been given 30-90 days.
Barbara, my wife, does not know this yet. I mean about the 30-90 days. For those of you who don't know this, Barbara was diagnosed with an oligodendroglioma last November which has since been rediagnosed as a GBM. She's also been fighting the battle with radiation and Temodar. I'm really concerned about how Barbara will take the news about my aunt. The survival statistics for GBMs is dismal. We've managed thus far not to be frightened by numbers on a graph. Barbara has been in good spirits mostly. I'm afraid the news about my aunt could break her spirit and weaken her will to keep fighting.
Barbara has had a few rounds of Temodar since her tumor stopped growing. She will have another MRI in a mid July. Fingers crossed.
Me. I'm just getting over a very nasty something that had all the symptoms of meningitis. It only lasted for four days and now I'm on the upswing. I was never tested for meningitis, so I don't know what it was. It probably wasn't meningitis or I wouldn't be writing this email. Strangely enough, I had almost the exact same episode a few months ago.
One day at a time.
July 20, 2006
Hi All,
Barbara and I visited Dana Farber Cancer Institute in Boston today. We brought the MRI films that were taken this week, plus the films from a month ago. We could clearly see, in a comparison with last month's MRI, that the tumor has continued to grow. The chemo that Barbara has been taking, Temodar, is not producing the desired effect. At best it has only slowed the growth of the tumor.
We discussed the options with the doctor and his staff and decided that the best option is to enroll Barbara in a clinical trial. In August she will start taking an oral chemo, in a phase II study, that is being studied by Dana Farber/Harvard Cancer Center. For those who are interested, the drug is called Gimatecan (ST-1481), DFCI IRB Protocol Number 05-291.
Barb will be in the study for up to a year or until the Gimatecan is proven to not be working on her tumor. If that happens, there are other options available. We'll do whatever it takes.
It is with a heavy heart that the following is shared...
Barbara J. Cox, 53, of Windham, NH died at her home Monday, November 6, 2006
Steve Cox, 4th ventricle ependymoma, surgery Feb 2004
h/o Barbara, grade IV GBM, surgery Nov 2005, Temodar and radiation