No one expects the Spanish Inquisition! Or brain cancer! This is our personal journey as a family when our 21 year old son was diagnosed with a brain mass and the roller coaster ride that followed. His life was turned upside down and his parent's worst nightmare that started on December 23, 2010.
Thursday, June 30, 2011
Brain Drain
Here is his poor pate! Up until the last few days he has been shiny bald but suddenly, just after his dark eyebrows and mustache came back a crop of snow white down, like a young eaglet has appeared. His radiation oncologist Dr. Shannon MacDonald thinks it will succumb to the radiation before coming back. Orion is now done with spinal fields and is now being blasted in the region that the late tumor once resided. This only takes a few minutes and so today we spent only our morning commuting to Boston, back in time for lunch.
Tuesday, June 28, 2011
Sacre Maroon!
Half-way through proton radiation therapy today and all Orion has to show for it is this Pepe' Le Pew radiation burn stripe down his back. He says it does not hurt. The blasts of protons shot into his head above the ears are at half strength so no redness there. Today was the last spine treatment. 15 days to go, another 3,000 miles of foul language from me, another $420 of gas, $60 in parking, $20 in tolls.
Thursday, June 23, 2011
In the Trenches
I wrote about the waiting room at the Langone Medical Center in NYC last January. I am a little uncomfortable about the whole cancer as war analogy, but what fits this struggle better? Cancer is dreaded for good reason. Our own bodies changed, metamorphosed into an enemy within, one that knows our weaknesses and our strengths.
At the Burr Proton Therapy Treatment Center in the basement of the Yawkey building at MGH all the patients are using the giant cyclotron but their cancers are all different. As I sit each day waiting for Orion to finish his time under the gun I observe the other patients and the staff. As a naturalist, observation is all.
My current favorite is a frail little girl, perhaps ten or twelve years old. Her skin is pale and thin, almost translucent. Her blond hair has been reduced by her treatments to a few hundred thin limp hairs, evenly falling down around her visible skull. Her eyes are a clear and piercing blue and looks right back at me when she catches me watching her. A small smile plays at her mouth. She is every bit as beautiful as her mother who is serene and rock steady as she helps her daughter rise from the wheelchair and walk to the cyclotron gantry treatment room. There is no hint as to the character of her cancerous enemy. Today is her last day and I will miss her. While she was in treatment her mother was asked by Paul, the waiting room receptionist, if she would like to be on the hospital mailing list for newsletters. Her reply was swift, no thank you. I knew she felt as I did, I want nothing to do with this place, these people, this year. I want to sweep it into the dusty corners of my heart and mind.
There is a Muslim family, the father perhaps my age, confined to a wheelchair and attended to by his wife and son. He looks defeated in his slumped shoulders and vacant eyes. His head has a terrible wound from his surgery at the very top of his skull. The dessert plate sized scar shows me that his skull was opened up and the large section removed has been artfully put back giving him a strange tonsorial bald patch, like a monk. His wife exudes an air of confidence and control, making intelligent little facial expressions when the father is asked questions by the medical staff. It is clear she would reply differently.
There are a whole series of handsome young men with no visible signs of damage. Their hair is intact, they move with the ease of thirty-year old athletes. They are all somber, business-like, punctual in their comings and goings. They have no one with them to help face the awful machine.
Late in the afternoon come the prostate crowd. These guys are my age to twenty years older. They are jolly, chat with each other, shake hands, trade jokes. It seems a club of well to do educated buddies meeting for a card game or a drink after work. Their treatments are few and short to treat early stage prostate cancer.
There are two patients with cancer of the eye. One, a young man of Orion's age, his right eye grievously wounded. He comes alone and sits quietly awaiting his turn. After a week and a half he has begun acknowledging me with a tip of his head. The other eye cancer patient is a woman my age, most often accompanied by a friend. The patient is very serious and strong in spirit and body. She carries the cancer and her treatments like a heavy burden that she is duty bound to carry without complaint. Her husband showed yesterday and seemed resentful of his small part in this ordeal.
A man is wheeled in with an oozing wound on his neck. He looks exhausted. An old woman comes by, her head with a few bruised and wet looking wounds. She is told that they may bleed but not to worry. I do not believe she understands where she is or what is happening. She seems to have a few children who don't want to be here (who does, really).
Then there are a few women who look about 35-45. They are friendly and seem perfectly healthy except for the fact that they are having daily radiation at the business end of the 250 million dollar cyclotron.
Another patient comes in by wheelchair. He is unhappy. He wears a sporty fedora to cover his bald head. He speaks through a hole in his trachea, his hand and feet tremble. Orion's age. The difference is incredible between the two. Orion sits next to me composing a new entry in his physics blog. Serene and fit, he is the only one who shows up with a hairless pate that he has embraced as fashionable. Only people standing over him can see the terrible scar from his neuro-surgery. Only those who look closely can see the prisms affixed to the inside of glasses, designed to trick his brain into correcting the offset double vision the tumor has caused.
There are many patients coming and going but another catches my eye. Another young girl, curled in fetal position on a stretcher, her head girded by a diabolical metal structure, brought down from Ellison 18, the children's ward. When spoken to she whispers back in a tiny voice. She too is alone.
Off to the side is a children's activity room, mostly managed by a music therapist, Lorie. She is funny, attractive and has boundless energy with a sure cheer for all the kids. I love watching her work, I love hearing her music spill out into this waiting room of the wounded and damaged.
Presiding over all of this is Paul, the receptionist. He is the perfect host. He knows everyone by name, he is discreet about the reasons we are all gathered here. He is efficient. I see him scanning the room like a conductor. Is everyone here? Are they all ready to go, do they need something to drink, to snack on? Do they know about the parking discount? He is about 50, neatly dressed. His desk and walls are covered with photos of his dogs and others that patients have sent in. Tucked under a shelf is the urn apparently containing the remains of one of these beloved canines. Sort of charming, sort of not.
At the Burr Proton Therapy Treatment Center in the basement of the Yawkey building at MGH all the patients are using the giant cyclotron but their cancers are all different. As I sit each day waiting for Orion to finish his time under the gun I observe the other patients and the staff. As a naturalist, observation is all.
My current favorite is a frail little girl, perhaps ten or twelve years old. Her skin is pale and thin, almost translucent. Her blond hair has been reduced by her treatments to a few hundred thin limp hairs, evenly falling down around her visible skull. Her eyes are a clear and piercing blue and looks right back at me when she catches me watching her. A small smile plays at her mouth. She is every bit as beautiful as her mother who is serene and rock steady as she helps her daughter rise from the wheelchair and walk to the cyclotron gantry treatment room. There is no hint as to the character of her cancerous enemy. Today is her last day and I will miss her. While she was in treatment her mother was asked by Paul, the waiting room receptionist, if she would like to be on the hospital mailing list for newsletters. Her reply was swift, no thank you. I knew she felt as I did, I want nothing to do with this place, these people, this year. I want to sweep it into the dusty corners of my heart and mind.
There is a Muslim family, the father perhaps my age, confined to a wheelchair and attended to by his wife and son. He looks defeated in his slumped shoulders and vacant eyes. His head has a terrible wound from his surgery at the very top of his skull. The dessert plate sized scar shows me that his skull was opened up and the large section removed has been artfully put back giving him a strange tonsorial bald patch, like a monk. His wife exudes an air of confidence and control, making intelligent little facial expressions when the father is asked questions by the medical staff. It is clear she would reply differently.
There are a whole series of handsome young men with no visible signs of damage. Their hair is intact, they move with the ease of thirty-year old athletes. They are all somber, business-like, punctual in their comings and goings. They have no one with them to help face the awful machine.
Late in the afternoon come the prostate crowd. These guys are my age to twenty years older. They are jolly, chat with each other, shake hands, trade jokes. It seems a club of well to do educated buddies meeting for a card game or a drink after work. Their treatments are few and short to treat early stage prostate cancer.
There are two patients with cancer of the eye. One, a young man of Orion's age, his right eye grievously wounded. He comes alone and sits quietly awaiting his turn. After a week and a half he has begun acknowledging me with a tip of his head. The other eye cancer patient is a woman my age, most often accompanied by a friend. The patient is very serious and strong in spirit and body. She carries the cancer and her treatments like a heavy burden that she is duty bound to carry without complaint. Her husband showed yesterday and seemed resentful of his small part in this ordeal.
A man is wheeled in with an oozing wound on his neck. He looks exhausted. An old woman comes by, her head with a few bruised and wet looking wounds. She is told that they may bleed but not to worry. I do not believe she understands where she is or what is happening. She seems to have a few children who don't want to be here (who does, really).
Then there are a few women who look about 35-45. They are friendly and seem perfectly healthy except for the fact that they are having daily radiation at the business end of the 250 million dollar cyclotron.
Another patient comes in by wheelchair. He is unhappy. He wears a sporty fedora to cover his bald head. He speaks through a hole in his trachea, his hand and feet tremble. Orion's age. The difference is incredible between the two. Orion sits next to me composing a new entry in his physics blog. Serene and fit, he is the only one who shows up with a hairless pate that he has embraced as fashionable. Only people standing over him can see the terrible scar from his neuro-surgery. Only those who look closely can see the prisms affixed to the inside of glasses, designed to trick his brain into correcting the offset double vision the tumor has caused.
There are many patients coming and going but another catches my eye. Another young girl, curled in fetal position on a stretcher, her head girded by a diabolical metal structure, brought down from Ellison 18, the children's ward. When spoken to she whispers back in a tiny voice. She too is alone.
Off to the side is a children's activity room, mostly managed by a music therapist, Lorie. She is funny, attractive and has boundless energy with a sure cheer for all the kids. I love watching her work, I love hearing her music spill out into this waiting room of the wounded and damaged.
Presiding over all of this is Paul, the receptionist. He is the perfect host. He knows everyone by name, he is discreet about the reasons we are all gathered here. He is efficient. I see him scanning the room like a conductor. Is everyone here? Are they all ready to go, do they need something to drink, to snack on? Do they know about the parking discount? He is about 50, neatly dressed. His desk and walls are covered with photos of his dogs and others that patients have sent in. Tucked under a shelf is the urn apparently containing the remains of one of these beloved canines. Sort of charming, sort of not.
Wednesday, June 15, 2011
Proton therapy
This is how Orion is spending his summer between Swarthmore and the University of Michigan. The plank he is on moves forward while the proton beam is diverted from the cyclotron and follows his spine.
He is on his chest, face in a rigid mask that was made for him. His back is marked up each day for alignment with different color markers. Sort of like a tattoo convention attended by idiots. That spout on the left is the proton nozzle and is rotated up over him when the beam is ready. Then his plank moves forward toward the center of the donut enclosure.
Tuesday, June 14, 2011
Questions and Answers
Since I'm not with the guys experiencing radiation therapy first hand, I, like all of you, am filled with questions. Some I've been able to ask. I send others with Orion to ask. And The Google answers others - the National Cancer institute has a good page and I've taken a bunch of info from it - http://www.cancer.gov/cancertopics/factsheet/Therapy/radiation
Why radiation?
Way back in January when Orion got his diagnosis and the treatment protocol, I asked Dr. Hochberg - Ten or twenty years from now, will you say chemo was necessary but we didn't need radiation? He said an emphatic no. Reading I've done since shows a greater incidence of recurrence of the cancer when chemo is the only treatment.
What's being radiated if the cancer is gone?
Well, we no longer can see the cancer with an MRI, but an MRI doesn't show cellular data. Even one cell left behind can grow quickly to the size of the original cancer. So the radiation is directed to the exact shape of the original tumor, expanded somewhat beyond because since we can't see the individual cells, we don't know where the edges are exactly. And since the markers were in the spinal fluid, we need to make sure there's no cancer left in the spine either.
The spine is so long that it's done in 5 sections. How do the technicians make sure there's no overlap (doubling the radioactive dose) or gaps (no dose)?
The technicians make marks all over Orion so they can line up the rays. He says they move the dividing lines a little each day, so if there's overlap or gap, this shift will make up for it.
Why 30 little zaps instead of one big one?
There are two main reasons for once-daily treatment:
- To minimize the damage to normal tissue.
- To increase the likelihood that cancer cells are exposed to radiation at the points in the cell cycle when they are most vulnerable to DNA damage
Studies are now being done to see if even more fractionalization is better - twice or more a day. Some future patient will benefit from what's learned.
Does radiation kill just cancer cells?
No (sadly). The amount of radiation that normal tissue can safely receive is known for all parts of the body. Doctors use this information to help them decide where to aim radiation during treatment and how much to give. Orion is getting 1.8Gy per day per spinal section and half that per day for each of the 2 brain treatments.
Should we worry about cognitive damage?
Well I worry about this. But studies I've read show that with pediatric brain cancers, older is better. I guess when your brain is pretty well formed so it can handle being beaten up. One chart I looked at showed that by age 12, cognitive damage was minimal.
If you are wondering about any other aspects of radiation treatment, tell me and I'll see what I can find out.
Why radiation?
Way back in January when Orion got his diagnosis and the treatment protocol, I asked Dr. Hochberg - Ten or twenty years from now, will you say chemo was necessary but we didn't need radiation? He said an emphatic no. Reading I've done since shows a greater incidence of recurrence of the cancer when chemo is the only treatment.
What's being radiated if the cancer is gone?
Well, we no longer can see the cancer with an MRI, but an MRI doesn't show cellular data. Even one cell left behind can grow quickly to the size of the original cancer. So the radiation is directed to the exact shape of the original tumor, expanded somewhat beyond because since we can't see the individual cells, we don't know where the edges are exactly. And since the markers were in the spinal fluid, we need to make sure there's no cancer left in the spine either.
The spine is so long that it's done in 5 sections. How do the technicians make sure there's no overlap (doubling the radioactive dose) or gaps (no dose)?
The technicians make marks all over Orion so they can line up the rays. He says they move the dividing lines a little each day, so if there's overlap or gap, this shift will make up for it.
Why 30 little zaps instead of one big one?
There are two main reasons for once-daily treatment:
- To minimize the damage to normal tissue.
- To increase the likelihood that cancer cells are exposed to radiation at the points in the cell cycle when they are most vulnerable to DNA damage
Studies are now being done to see if even more fractionalization is better - twice or more a day. Some future patient will benefit from what's learned.
Does radiation kill just cancer cells?
No (sadly). The amount of radiation that normal tissue can safely receive is known for all parts of the body. Doctors use this information to help them decide where to aim radiation during treatment and how much to give. Orion is getting 1.8Gy per day per spinal section and half that per day for each of the 2 brain treatments.
Should we worry about cognitive damage?
Well I worry about this. But studies I've read show that with pediatric brain cancers, older is better. I guess when your brain is pretty well formed so it can handle being beaten up. One chart I looked at showed that by age 12, cognitive damage was minimal.
If you are wondering about any other aspects of radiation treatment, tell me and I'll see what I can find out.
Saturday, June 11, 2011
Friday, June 10, 2011
Flawed Technology
So here we sit in the waiting room at the Burr Proton Therapy Center. As usual we left Northampton at ten for the 100 mile commute in. The ride this morning was as smooth as possible until we hit Storrow Dr. Then Orion got a call from the cyclotron techs that the machine had broken down and they hoped that he had not left for Boston yet. He laughed and told them that he was already in town.
We walked down to Whole Wallet, our favorite criminally priced food store and found some lunch. No tables though-each of the seven tables were occupied by one individual, not eating but using cell phones. We headed back to the River Cafe at Yawkey and had a lovely meal before coming into the Proton Center to be told to wait. No information.
The way this works is that there are several gantries or ports that protons can be shunted out of the cyclotron's tunnel of accelerated particles. This allows MGH to treat more patients at the same time, important since this is insanely expensive. Apparently one gantry is out of order and patients are piling up. So to speak. Given that we are seeing fewer people here and there is some traffic it looks good although I dread the Friday traffic.
Update as I write this! The technician came out told us the problem is in a few wires that are being replaced and we are looking at about an hour and a half delay. BUT she also told us that we get to go into the control room and chat with the physicist in charge to "kill" time!
More anon.
We walked down to Whole Wallet, our favorite criminally priced food store and found some lunch. No tables though-each of the seven tables were occupied by one individual, not eating but using cell phones. We headed back to the River Cafe at Yawkey and had a lovely meal before coming into the Proton Center to be told to wait. No information.
The way this works is that there are several gantries or ports that protons can be shunted out of the cyclotron's tunnel of accelerated particles. This allows MGH to treat more patients at the same time, important since this is insanely expensive. Apparently one gantry is out of order and patients are piling up. So to speak. Given that we are seeing fewer people here and there is some traffic it looks good although I dread the Friday traffic.
Update as I write this! The technician came out told us the problem is in a few wires that are being replaced and we are looking at about an hour and a half delay. BUT she also told us that we get to go into the control room and chat with the physicist in charge to "kill" time!
More anon.
Wednesday, June 8, 2011
A Rad Afternoon
So we spent our first afternoon at the Burr Proton Therapy Center at MGH for Orion's first of thirty exposures to protons and X-Rays.
We drove in, a hundred miles, without a hitch and then were sent off for blood work, then Orion signed up to be one of forty-five participants in a study of short term and long term effects of proton radiation for the rest of his life.
Our wonderful pediatric oncologist Dr. David Ebb found us down in the waiting room and took us off for a private exam of Orion's formerly feverish feet and to bring Orion up to speed on the prospects of the Boston Bruins. Orion said, uh? Say what?
Ebb was scandalized that radiation used the pediatric group for the blood work and said "no way back up to oncology for the duration". Then Orion was hauled off for his first session. This was much longer as the first time since they had to adjust him and the 250 ton cyclotron and its ports to deliver the proton beam into his spine.
He emerged an hour later all smiles, no nausea, no burning, no marks other than these pictured. We do this for another twenty-nine times so he and I are settling in.
Thursday, June 2, 2011
Feverish Feet!
Just when we were finished with Orion graduating from Swarthmore College and we thought he had a little breather from medical procedures he woke up to both feet swelling and covered in a bright rash. His feet were hot to the touch and tender. It looked like contact dermatitis to me but from what, where? I had him elevate his feet and take a benedryl cap. After an hour they started looking a little better but he called his oncologist Dr. Ebb who wanted him to get an ultra-sound to rule out a blood clot in his legs.
This on a day when my car was in the shop getting prepped for our seven weeks of commuting to Boston for radiation therapy. So Sally left work and off we went to Cooley-Dickinson, our community hospital. Nice enough folk but I admit to regretting leaving Boston and MGH. After nearly five hours they had ruled out a blood clot and all his blood values were normal. So they shrugged and sent us home.
This morning his feet look much better, hot touch gone, almost normal. He set up his first appointment for proton radiation for next Wednesday when we will also check in with Dr. Ebb.
I wish I did not have to write this blog!
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