I'm doing ridiculously well! But I'm still unsure whether I want to get radiation.
Proton beam is much better for me than photon. Two institutions in the US offer proton therapy... one of which is about 30 minutes from CMC! I'm going back to school! Even if I only take 3 classes this semester, I will only be a half-credit behind. Even though I dropped a semester, I'm still a half credit ahead (one class = 1 credit). I doubt I'll have to drop any classes for radiation... I spent four years of my life in excrutiating pain... I still earned awesome grades and did everything that I loved. In the last two months, I wasn't able to walk, but I was earning nearly all As (it's a shame that I had to drop that awesome GPA potential).
I found out today that my school's history dept. has selected me (with 3 other students) for an all expense paid spring break trip to India. I've been to India three times, but I'd like to challenge my family-visit comfort zone and explore the country from a more outgoing perspective. This will be such an amazing experience, and I feel so fortunate to have been selected. Now, I have to get strong and hope this tumor grows back after march. I actually considered withdrawing my application from the program. Then I realized that I cannot live in paranoia and fear. I have to challenge myself, take risks, and put myself out there. I cannot fear a congregation of microscopic cells. Sure, they are part of me (and attached to my nerves), but I am bigger than them. Even when the tumor was 8 inches, I was still bigger and stronger. This experience will never hold me back. I just gotta do my thing (thang).
As far as my recovery...
I've had about 3 physical therapy sessions... and each one gets better. I'm gaining some flexibility (and very little strength). After PT this morning, I walked up a flight of stairs! I was so excited that I could do that-- I didn't think I would. In the months before my diagnosis, I would drag myself up stairs. I lived on the second floor of my dorm, and I found it so painful to get up stairs. I was so excited this morning-- I didn't even hold on to the hand rail! I'm not religious, but I feel like I've lived through a miracle. I've recovered so much, so fast, in such a short amount of time... Before my surgery, I wasn't able to run-- I couldn't get my legs off the ground. Maybe once I've done some more PT, I'll be able to run again... and bike.
so... who wants to go hiking this Summer? I went hiking/running all the time this past summer. It's ridiculous that I was able to do that... considering how much pain I was in.
Tuesday, December 12, 2006
Thursday, December 7, 2006
Grey's Anatomy
Myxopapillary ependymoma patient on Grey's Anatomy season 2 episode 5.
Ridiculous... people get these in real life!
Ridiculous... people get these in real life!
Wednesday, December 6, 2006
I can stand on my tip toes!!!
Today, I went to the doctor because there was an infection at my incision site. Got some antibiotics, and they did a swab to rule out a staff infection.
Later this week, I have to get a (full spine) MRI to make sure there are no tumors in other areas of my spine.
That should be exciting.
I got a response from the neurosurgeon. He suggested that I wait on the radiation.
Coming from one of the top neuros in the country....
But he did suggest that I will need the radiation in the future.
I will have to see.
Later this week, I have to get a (full spine) MRI to make sure there are no tumors in other areas of my spine.
That should be exciting.
I got a response from the neurosurgeon. He suggested that I wait on the radiation.
Coming from one of the top neuros in the country....
But he did suggest that I will need the radiation in the future.
I will have to see.
Still Confused
To radiate or not to radiate? Who knows?
My radiologists can't tell me one way or the other. My NS can't tell me one way or the other. My parents can't tell me one way or the other.
So I've decided to contact two people.
1. the "best" neurosurgeon in the country for myxopapillary ependymomas
and
2. a radiologist at the U.S.'s busiest cancer center
I've heard back from #2. Generally, he would suggest radiation to someone in my place. But there's one problem-- my age. I'm 19, and radiation could strip years off my life. Who knows when the radiation could catch up with me and kill me? I could die in 10 years.
He said that I should expect radiation at some point in my life.... whether or not I choose to do it now.
I need to develop a plan of action for both scenarios... radiation now or radiation later.
I'm waiting for the Johns Hopkins neurosurgeon to respond. I'm also going to southern California to talk with doctors at Loma Linda about proton radiotherapy. I'm also meeting with a Stanford radiologist on my birthday. I know that Stanford is one of the only facilities in the Bay Area that uses a cyberknife (it's a form of radiation... a non-surgical alternative to tumor control). I wonder if I could be a cyberknife candidate when the tumor grows back?
I wonder WHEN the tumor will grow back?
My radiologists can't tell me one way or the other. My NS can't tell me one way or the other. My parents can't tell me one way or the other.
So I've decided to contact two people.
1. the "best" neurosurgeon in the country for myxopapillary ependymomas
and
2. a radiologist at the U.S.'s busiest cancer center
I've heard back from #2. Generally, he would suggest radiation to someone in my place. But there's one problem-- my age. I'm 19, and radiation could strip years off my life. Who knows when the radiation could catch up with me and kill me? I could die in 10 years.
He said that I should expect radiation at some point in my life.... whether or not I choose to do it now.
I need to develop a plan of action for both scenarios... radiation now or radiation later.
I'm waiting for the Johns Hopkins neurosurgeon to respond. I'm also going to southern California to talk with doctors at Loma Linda about proton radiotherapy. I'm also meeting with a Stanford radiologist on my birthday. I know that Stanford is one of the only facilities in the Bay Area that uses a cyberknife (it's a form of radiation... a non-surgical alternative to tumor control). I wonder if I could be a cyberknife candidate when the tumor grows back?
I wonder WHEN the tumor will grow back?
Monday, December 4, 2006
Visit with radiologist #1
Today, I had a two hour consultation with my radiologist...
and goodness does my situation keep getting weirder and weirder.
Apparently, my tumor is much rarer than what I suspected. The radiologist (rad.), a Yale grad with 10 years of experience, has never seen a case like mine. According to to the rad., there is no research on my type of tumor. There will most likely be no research. There have been 30 reported cases of people with my precise condition in the last 30 years (in the U.S.).
It turns out that radiation will not affect my ovaries and uterus. My neurosurgeon thought it would, but it won't, so I've put those fears to rest.
Radiation opens another can of worms, however. Radiation (considerably) increases chances of future cancer-- the rad. is especially concerned for my bladder and rectal area. If I do get cancer, I may not be able to have radiation in the future. The longer I live, the higher chances I have of getting cancer. I have 60 + years left to live, so who knows when I would die a cancerous death? Also, there's a chance that the ependymoma will grow back... even with radiation. If the ependy grows back, I will not be able to have radiation.
So my other option is to wait it out. If I wait it out, I would need regular brain and spine MRIs... every 3 months or so for the rest of my life. It may grow back, it may grow back very slowly, or it may not grow back at all. If it grows back, I may need a second surgery... followed by radiation. We're not sure if my neurosurgen cut the blood supply to the tumor. I don't think he did, since the remaning tumor is entwined with my nerve roots.
If the tumor grows back, it will be harder to remove with radiation since the radiologist must attack more cells. If I do radiation right now, there are fewer cells to kill, so it would be easier. It may be more practical to do radiation later. If the tumor grows back in 5 years, technology will be better, so I may have more options.
If I choose to proceed with radiation, I will need to do it in southern California at Loma Linda. Apparently, I need a specific type of beam for the procedure (I need a proton beam as opposed to a photon beam due to particle dispersion properties). No Bay Area hospitals, not even Stanford or UCSF are equipped to do it. Radiation will take five or six weeks if I choose to proceed. I'm planning to meet with someone at Loma Linda within the next two weeks.
The tumor probably won't kill me, but radiation may. I'm not sure if I feel comfortable going through with the radiation, but I'm going to wait until I meet with a couple more radiologists.
So many things have begun to come together-- why I was misdiagnosed, why I had so much trouble in sports and tae kwon do, why I always dragged my feet while I walked. I probably had this tumor for my whole life. It's really a wonder that I can still walk and that I've regained so much strength.
I'm so lucky.
and goodness does my situation keep getting weirder and weirder.
Apparently, my tumor is much rarer than what I suspected. The radiologist (rad.), a Yale grad with 10 years of experience, has never seen a case like mine. According to to the rad., there is no research on my type of tumor. There will most likely be no research. There have been 30 reported cases of people with my precise condition in the last 30 years (in the U.S.).
It turns out that radiation will not affect my ovaries and uterus. My neurosurgeon thought it would, but it won't, so I've put those fears to rest.
Radiation opens another can of worms, however. Radiation (considerably) increases chances of future cancer-- the rad. is especially concerned for my bladder and rectal area. If I do get cancer, I may not be able to have radiation in the future. The longer I live, the higher chances I have of getting cancer. I have 60 + years left to live, so who knows when I would die a cancerous death? Also, there's a chance that the ependymoma will grow back... even with radiation. If the ependy grows back, I will not be able to have radiation.
So my other option is to wait it out. If I wait it out, I would need regular brain and spine MRIs... every 3 months or so for the rest of my life. It may grow back, it may grow back very slowly, or it may not grow back at all. If it grows back, I may need a second surgery... followed by radiation. We're not sure if my neurosurgen cut the blood supply to the tumor. I don't think he did, since the remaning tumor is entwined with my nerve roots.
If the tumor grows back, it will be harder to remove with radiation since the radiologist must attack more cells. If I do radiation right now, there are fewer cells to kill, so it would be easier. It may be more practical to do radiation later. If the tumor grows back in 5 years, technology will be better, so I may have more options.
If I choose to proceed with radiation, I will need to do it in southern California at Loma Linda. Apparently, I need a specific type of beam for the procedure (I need a proton beam as opposed to a photon beam due to particle dispersion properties). No Bay Area hospitals, not even Stanford or UCSF are equipped to do it. Radiation will take five or six weeks if I choose to proceed. I'm planning to meet with someone at Loma Linda within the next two weeks.
The tumor probably won't kill me, but radiation may. I'm not sure if I feel comfortable going through with the radiation, but I'm going to wait until I meet with a couple more radiologists.
So many things have begun to come together-- why I was misdiagnosed, why I had so much trouble in sports and tae kwon do, why I always dragged my feet while I walked. I probably had this tumor for my whole life. It's really a wonder that I can still walk and that I've regained so much strength.
I'm so lucky.
Sunday, December 3, 2006
Myxopapillary ependymoma
I've always thought blogs were stupid, but now I've started one out of boredom, emotional turmoil, and the belief that people should know what I'm going through. This blog will (hopefully) be short lived. It will chronicle my ups, downs, and in betweens. Posts are written with the understanding that readers know me and would like updates of what I've endured.
To those who do not know me, this information will help you understand what I'm going through.
I'm 19, female, and a college student in Southern California.
Now comes the story....
This past Halloween, doctors "discovered" a tumor in my spine and concluded that I was moments from complete paralysis of my legs. I had a lumbar laminectomy (L1-L4) two weeks later, and the Neurosurgeon (NS) was able to remove about 95% of the tumor. It was benign and about 8 inches long. It was pink and according to the NS, resembled spaghetti in mucous.
Now how the hell did I end up with an 8 inch tumor in my spine? I have no idea.
For four years, I'd visited the doctor with complaints of pain in my lower back and legs. Prospective remedies ranged from 6 sessions of physical therapy to yoga to weight loss (I am 5'2" and 125 lbs. Weight loss was an absurd suggestion).
This past September, I began to lose function in my legs. Pain escalated, I walked very slowly, and I had to drag myself upstairs). I developed a foot drop in my left leg and fell frequently... I couldn't run or jump, and I had become extremely weak. By October, I became extremely depressed and decided that I could not live life in such a condition.
I came home and saw several doctors. They discovered abnormal weakness in my legs and that my reflexes no longer worked (you know... when they tap your knee with the mallot thingy... my legs didn't respond to that). I had an MRI on October 30 and on Halloween, they found the tumor.
The next week, I met with a neurosurgeon who expressed that I need surgery ASAP. At this point, we were unsure if the tumor was cancerous or if it had traveled to my brain. (A brain MRI later confirmed that I did not have additional tumors). Within two days, I withdrew from school. I was not financially reimbursed for the withdrawal, and I did not receive credit for my dropped courses. My school is a 6 hour drive from home, and November 4, my parents helped move me out of my dorm.
Surgery was a bitch. It was a 5 hour procedure, and I was confined to 48 hour flat bedrest (I had to lie flat in bed for two days). The type of surgery I had, a lumbar laminectomy, involved breaking my spine in about 5 places... so we had to be careful about that. While on bedrest, I contracted a stomach virus which caused 18 rounds of diarrhea (in a 24 hour period). I felt humiliated and had to wear a diapper.
Diarrhea sucked, but I was so lucky. The surgery did not cause additional nerve damage. I could feel my lower extremities, and I began to walk (with a walker) 4 days after my surgery. I was discharged after 8 days in the hospital.
Physically, I'm recovering at light speed. I no longer use a walker. I have to wear a back brace for 3 months, but that is no big deal. It's really a miracle that I can walk-- let alone that I've trashed the walker.
I've learned that tumors like mine (size-wise) inevitably lead to paralysis/loss of bladder and bowel function. I have all function in my legs, and I may even have more than before the surgery.... it's too early to tell.
The type of tumor I have is called a myxopapillary ependymoma. I've found an online support group for adult ependymoma survivors, but I've been unable to find anyone my age or anyone who experienced a situation like mine. From research I've done, I've learned that these tumors are extremely rare and have no known environmental cause.
My ordeal isn't over. Five to ten percent of the tumor remains in my spine. They are microscopic fragments, and there is a chance that the tumor will grow back. There is a chance that I have microscopic fragments in my brain, which are undetectable by MRIs at this point. I will probably have to have regular brain and spine MRIs to monitor growth.
The neurosurgeon also wants me to get radiation. I plan to meet with two radiation oncologists next week to explore my options. Right now, I'm looking at infertility, another semester off from school, sickness, weakness, premature menopause, etc. I'm not sure if I want to do it, but in the end, radiation may be the best option for me. I've felt nothing short of overwhelmed, and I'm freaking out... but I will not have a concrete agenda until I meet with these radiologists.
Right now, I'm exploring egg freezing. I've learned that it costs 20 G and that technology's unreliable. I don't know if I want kids, but I don't want to lose the opportunity before I have a chance to decide.
I've looked everywhere to find people like me, but they seem to be nowhere. Nowhere is a 19 year old ependymoma "survivor" who has undergone radiation for tumor entwined in her nerves. Everyone who I've talked to has been much older and have had their children or have been male or have had tumors in different parts of the spine/brain etc.
Today's one of my less optimistic days, but those are expected.
To those who do not know me, this information will help you understand what I'm going through.
I'm 19, female, and a college student in Southern California.
Now comes the story....
This past Halloween, doctors "discovered" a tumor in my spine and concluded that I was moments from complete paralysis of my legs. I had a lumbar laminectomy (L1-L4) two weeks later, and the Neurosurgeon (NS) was able to remove about 95% of the tumor. It was benign and about 8 inches long. It was pink and according to the NS, resembled spaghetti in mucous.
Now how the hell did I end up with an 8 inch tumor in my spine? I have no idea.
For four years, I'd visited the doctor with complaints of pain in my lower back and legs. Prospective remedies ranged from 6 sessions of physical therapy to yoga to weight loss (I am 5'2" and 125 lbs. Weight loss was an absurd suggestion).
This past September, I began to lose function in my legs. Pain escalated, I walked very slowly, and I had to drag myself upstairs). I developed a foot drop in my left leg and fell frequently... I couldn't run or jump, and I had become extremely weak. By October, I became extremely depressed and decided that I could not live life in such a condition.
I came home and saw several doctors. They discovered abnormal weakness in my legs and that my reflexes no longer worked (you know... when they tap your knee with the mallot thingy... my legs didn't respond to that). I had an MRI on October 30 and on Halloween, they found the tumor.
The next week, I met with a neurosurgeon who expressed that I need surgery ASAP. At this point, we were unsure if the tumor was cancerous or if it had traveled to my brain. (A brain MRI later confirmed that I did not have additional tumors). Within two days, I withdrew from school. I was not financially reimbursed for the withdrawal, and I did not receive credit for my dropped courses. My school is a 6 hour drive from home, and November 4, my parents helped move me out of my dorm.
Surgery was a bitch. It was a 5 hour procedure, and I was confined to 48 hour flat bedrest (I had to lie flat in bed for two days). The type of surgery I had, a lumbar laminectomy, involved breaking my spine in about 5 places... so we had to be careful about that. While on bedrest, I contracted a stomach virus which caused 18 rounds of diarrhea (in a 24 hour period). I felt humiliated and had to wear a diapper.
Diarrhea sucked, but I was so lucky. The surgery did not cause additional nerve damage. I could feel my lower extremities, and I began to walk (with a walker) 4 days after my surgery. I was discharged after 8 days in the hospital.
Physically, I'm recovering at light speed. I no longer use a walker. I have to wear a back brace for 3 months, but that is no big deal. It's really a miracle that I can walk-- let alone that I've trashed the walker.
I've learned that tumors like mine (size-wise) inevitably lead to paralysis/loss of bladder and bowel function. I have all function in my legs, and I may even have more than before the surgery.... it's too early to tell.
The type of tumor I have is called a myxopapillary ependymoma. I've found an online support group for adult ependymoma survivors, but I've been unable to find anyone my age or anyone who experienced a situation like mine. From research I've done, I've learned that these tumors are extremely rare and have no known environmental cause.
My ordeal isn't over. Five to ten percent of the tumor remains in my spine. They are microscopic fragments, and there is a chance that the tumor will grow back. There is a chance that I have microscopic fragments in my brain, which are undetectable by MRIs at this point. I will probably have to have regular brain and spine MRIs to monitor growth.
The neurosurgeon also wants me to get radiation. I plan to meet with two radiation oncologists next week to explore my options. Right now, I'm looking at infertility, another semester off from school, sickness, weakness, premature menopause, etc. I'm not sure if I want to do it, but in the end, radiation may be the best option for me. I've felt nothing short of overwhelmed, and I'm freaking out... but I will not have a concrete agenda until I meet with these radiologists.
Right now, I'm exploring egg freezing. I've learned that it costs 20 G and that technology's unreliable. I don't know if I want kids, but I don't want to lose the opportunity before I have a chance to decide.
I've looked everywhere to find people like me, but they seem to be nowhere. Nowhere is a 19 year old ependymoma "survivor" who has undergone radiation for tumor entwined in her nerves. Everyone who I've talked to has been much older and have had their children or have been male or have had tumors in different parts of the spine/brain etc.
Today's one of my less optimistic days, but those are expected.
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