Adriana's Tumor Tuition Fund
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#GFMScholarship
My name is Adriana Amaya, I'm 27 years old, I'm from Anchorage, Alaska and I have a tumor. A Giant Cell Tumor of Bone to be exact. In my upper right tibia, right at the knee joint. It was first discovered when I was 22. As I was chasing after my boyfriend's car to try and alert him that he had forgotten something, the longstanding knee pain I'd been experiencing suddenly made its presence a priority with a sudden "crack" sound and a snapping feeling in my right knee. Used to knee injuries and tendonitis due to my long history as an athlete, I did not become immediately concerned, and tried to pass it off as something minor. After several hours of limping around my apartment, going to a school meeting and bumming a ride home, the aforementioned boyfriend and my very consientiuous combat medic roommate told me in very concerned tones that I was going to the emergency room. At the ER I was treated like a standard sprain, given a knee immobilizer and told to call an orthopaeding surgeon if I was still having symptoms after 7 days. Judging by the volume of the cracking and snapping that I'd heard, I decided after day 4 that I was calling the surgeon regardless. After much wiggling of my knee joint and describing of symptoms the surgeon diagnosed me with a torn ACL and ordered X-rays and and MRI and surgery. At each of the imaging appointments, the radiology techs would come in with that "I'm so sorry" face that medical personnell get and ask me if I knew I had a large cyst/tumor in my bone. Well I didn't know. But I reassured them that I was just there to get my ACL checked and I would be A-OK. What a surprise I was in for! At the follow-up appointment with Dr. Tamai, my orthopaedic surgeon in Fairbanks, AK he came in silently and seated himself on his stool accross from me. His features were arranged in a solemn "I'm so sorry" manner. He told me that my ACL was fine, but, I had a large tumor about the size of my fist growing in my upper right tibia. The pain and the sound I'd heard were my bone breaking because the tumor had gotten so large and weakened the bone around my knee joint. He had never had a patient with this rare tumor before but he was going to refer me to a specialist in Seattle because there was no one in Alaska who worked with sarcoma patients. Well I spent a few shocked weeks waiting to hear back from the renowned Dr. Ernest "Chappie" Conrad's office at the University of Washington in Seattle and finally recieved an appointment in December (the accident originally took place in October). As per my Dr's instructions I stopped running, dancing, skiing, anything that might break my bone again and shuffled gingerly over the icy sidewalks to my classes.
I met my parents in Seattle exhausted from having taken all of my final exams a week early and ready for some answers. At the first appointment, the wonderful and personable Dr. Conrad explained that I had what looked like a Giant Cell Tumor of Bone in my upper right tibia; a very rare, aggressive benign tumor. The only current treatment was to do surgery to remove the bone, fill the hole with bone cement and a bone graft taken from my hip, and then cross our fingers and hope that the 40-60% recurrence rate didn't apply to me. A chest x-ray was done to check for the rare mestastasis of the tumor to my lungs. Luckily, my lungs were and continue to be clear.
Two days later I was at the University of Washington Medical Center Surgery Pavilion waiting to be prepped for surgery. After 2 1/2 hours of nervous waiting, my parents were alerted that the surgery was successful but that the tumor had been even larger than they initially anticipated, I would probably have to avoid impact sports for the rest of my life and would be looking at a 2-3 month recovery. I spent 5 days in the hospital and was finally discharged with a walker, enough painkillers for an army and a cancelled Christmas trip to Hawai'i.
I spent the next 10 months on crutches. I completed my spring semester of school on crutches living in a dry cabin (that means NO running water and an outhouse folks) in Fairbanks, AK where the average temperature for that time of year is about -35 degrees Farenheit. I got a job as an environmental educator in Homer, Alaska for the summer and led daily nature hikes and a 4-day sleepaway camp for kids on crutches. FINALLY, in August, I was given clearance to walk. I cried I was so happy. I went back to school in the fall, started my senior year of college and threw myself into writing my thesis and working at a local bakery and renewing my position as the Vice President of the dance team. I did lots of yoga and lots of swimming as per the surgeon's instructions. I had my 6-month CT scan done in December right before Christmas break and drove down to Anchorage, AK for the holidays. During the first three weeks of Christmas break I noticed an increasing pain in my right knee, sometimes so bad I couldn't walk. I ordered my CT scan results to be sent to me and as I read them, the dread I'd been feeling congealed into a hard knot in my stomach. After four months of two-leggedness, my tumor had grown back. Two months later I was scheduled for surgery in March 2012 with Dr. Conrad in Seattle. This time, they had to take the bone graft from my left hip and it was a far more sizable chunk than the first surgery. I was told I would DEFINITELY not be able to run, ski, do gymnastics, dance or play ultimate frisbee again. I spent another 5 days in the hospital and was released to endure my least favorite flight back to Alaska. This time things seemed to be looking up. I bought myself a ticket to Hawai'i and spent a month with my aunt and uncle and grandma recovering in paradise. I returned home to graduate from the University of Alaska Fairbanks with my Bachelor's in Natural Resources Managament in May and walked accross the stage and received my diploma on crutches. By this time even my professors had that "I'm so sorry" look on their faces. But I remained optimistic! I was allowed to walk again after only two months on crutches and resumed my hiking, nature tour guide position in Homer for that summer. I spent the next 3 years being a 20-something. I moved to Anchorage, worked as an environmental educator for the US Fish and Wildlife service, coached kids in cross-country skiing and even (with the disapproval of my doctor) trained for and completed the original marathon in Athens, Greece with my then-fiance. 3 months after this huge milestone I began having a familiar pain and pressure in my right knee. After initial x-rays my doctor told me I was to return to Seattle for my 3rd surgery. After weeks of coordinating with the hospital in Seattle, filling out paperwork with my job and paying over a thousand dollars in airfare and hotel costs, I made it to Seattle for my April 23rd appointment at the Seattle Cancer Care Alliance. After studying my CT scan, the ever-wonderful Dr. Conrad told me he thought that maybe surgery wasn't going to cut it this time. He explained how rare it is for these types of tumors to recur this many times and after such a long period of remission. He called in the rest of the medical Oncology and we all discussed the pros and cons of a new chemotherapy drug that had recently been approved to treat Giant Cell Tumor of Bone. My fiance had concerns about the side-effects of the drug and the medical oncologist warned me that before starting the chemo I would need to undergo reproductive preservation; freezing my embryos or eggs so that I could have children in the future as the chemo would damage my reproductive system. Unfortunately my hormones were not at the correct levels and I had a large cyst on one of my ovaries preventing them from starting the hormone therapy while we were still in Seattle. Several hundred more dollars later we were back in Anchorage and I was back at work, and under the care of a new gynecologist getting blood tests every three days to monitor my hormone levels. Within two weeks I was cleared to start the hormone therapy. Working with the Seattle Repriductive Medicine clinic (of course there are no faiclities that do egg harvest and preservation in Alaska) I had many of the drugs paid for by Livestrong, and various other cancer support agencies, however even with the 20% cancer discount I was still billed $5,028 dollars for the whole process as my insurance does not cover reproductive preservation even in the face of chemo. I started giving myself the daily hormone shots in my father's hopsital room where he was lying near death after an infection brought on by his cancer (Multiple Myeloma) and the doctors were scrambling trying to figure out what was wrong with his kidneys. Six days later I was back in Seattle, traveling to the clinic every day by bus to have my blood drawn and hormone levels taken and an ultrasound done to count my eggs until I was at the correct levels for surgery. I took the bus at 7am to the Seattle Reproductive Medicine clinic, had surgery, and was transported back to my hotel in a medical cab to recover for 24 hours before I packed, and flew back to Anchorage by myself. I had my first dose of chemo 48 hours after my egg harvesting surgery and went back to work 4 days later.
My dad would remain in the hospital for the next three weeks, to be diagnosed with amyloidosis which had effectively shut down his kidneys and his digestive system. We had a family meeting with all of the doctors and all of my 5 brothers to decide how my dad wanted to spend the last few months of his life.
I spent the whole summer, sick, in pain and exhausted from chemo, working full time and spending as much free time as I could at my parents' house, visiting with all of my brothers and their children, all up for the summer to say goodbye to my father. I flew back to Seattle in August to have my tumor checked and Dr. Conrad and Dr. Loggers looked excited and showed me how much bone I had regrown with the chemo and that he should be able to do surgery in a few months and remove the tumor for good. Feeling ecstatic I returned home to Alaska with the good news. My surgery was scheduled for October 1st. My dad decided to stop dialysis and died on September 6th. I flew to Seattle on September 27th with my fiance again and on the 28th was told the amazing news! I was a best-case-scenario chemo patient! I had re-grown so much bone that the team thought I should just keep doing the chemo indefinitely until it either stopped working or there were no signs of tumor left. I returned to Alaska and to work, feeling overjoyed and started running again. A month later my fiance who I was preparing to move to Colorado with broke up with me. I finished my last day of work on November 25th, 2015 and started my preparations for moving to Colorado to start nursing school (I had decided by this point that fiance or not I had been waiting to go to nursing school for three years and was excited about moving to Colorado nonetheless). I had my last dose of chemo at my Anchorage oncologist on December 23rd, and have an appointment scheduled with the University of Colorado Cancer center on January 13th, 2015. My knee started hurting again. And popping, and twinging. A CT scan has been ordered in Colorado to search for the likely recurrence and determine if the chemo has indeed stopped working. I'm trying not to imagine having surgery during the first month of nursing school. I'm trying to imagine where I will get the next $10,000 to pay for treatment and surgery and still pay my tuition for nursing school. I'm trying my best to stay positive.
My name is Adriana Amaya, I'm 27 years old, I'm from Anchorage, Alaska and I have a tumor. A Giant Cell Tumor of Bone to be exact. In my upper right tibia, right at the knee joint. It was first discovered when I was 22. As I was chasing after my boyfriend's car to try and alert him that he had forgotten something, the longstanding knee pain I'd been experiencing suddenly made its presence a priority with a sudden "crack" sound and a snapping feeling in my right knee. Used to knee injuries and tendonitis due to my long history as an athlete, I did not become immediately concerned, and tried to pass it off as something minor. After several hours of limping around my apartment, going to a school meeting and bumming a ride home, the aforementioned boyfriend and my very consientiuous combat medic roommate told me in very concerned tones that I was going to the emergency room. At the ER I was treated like a standard sprain, given a knee immobilizer and told to call an orthopaeding surgeon if I was still having symptoms after 7 days. Judging by the volume of the cracking and snapping that I'd heard, I decided after day 4 that I was calling the surgeon regardless. After much wiggling of my knee joint and describing of symptoms the surgeon diagnosed me with a torn ACL and ordered X-rays and and MRI and surgery. At each of the imaging appointments, the radiology techs would come in with that "I'm so sorry" face that medical personnell get and ask me if I knew I had a large cyst/tumor in my bone. Well I didn't know. But I reassured them that I was just there to get my ACL checked and I would be A-OK. What a surprise I was in for! At the follow-up appointment with Dr. Tamai, my orthopaedic surgeon in Fairbanks, AK he came in silently and seated himself on his stool accross from me. His features were arranged in a solemn "I'm so sorry" manner. He told me that my ACL was fine, but, I had a large tumor about the size of my fist growing in my upper right tibia. The pain and the sound I'd heard were my bone breaking because the tumor had gotten so large and weakened the bone around my knee joint. He had never had a patient with this rare tumor before but he was going to refer me to a specialist in Seattle because there was no one in Alaska who worked with sarcoma patients. Well I spent a few shocked weeks waiting to hear back from the renowned Dr. Ernest "Chappie" Conrad's office at the University of Washington in Seattle and finally recieved an appointment in December (the accident originally took place in October). As per my Dr's instructions I stopped running, dancing, skiing, anything that might break my bone again and shuffled gingerly over the icy sidewalks to my classes.
I met my parents in Seattle exhausted from having taken all of my final exams a week early and ready for some answers. At the first appointment, the wonderful and personable Dr. Conrad explained that I had what looked like a Giant Cell Tumor of Bone in my upper right tibia; a very rare, aggressive benign tumor. The only current treatment was to do surgery to remove the bone, fill the hole with bone cement and a bone graft taken from my hip, and then cross our fingers and hope that the 40-60% recurrence rate didn't apply to me. A chest x-ray was done to check for the rare mestastasis of the tumor to my lungs. Luckily, my lungs were and continue to be clear.
Two days later I was at the University of Washington Medical Center Surgery Pavilion waiting to be prepped for surgery. After 2 1/2 hours of nervous waiting, my parents were alerted that the surgery was successful but that the tumor had been even larger than they initially anticipated, I would probably have to avoid impact sports for the rest of my life and would be looking at a 2-3 month recovery. I spent 5 days in the hospital and was finally discharged with a walker, enough painkillers for an army and a cancelled Christmas trip to Hawai'i.
I spent the next 10 months on crutches. I completed my spring semester of school on crutches living in a dry cabin (that means NO running water and an outhouse folks) in Fairbanks, AK where the average temperature for that time of year is about -35 degrees Farenheit. I got a job as an environmental educator in Homer, Alaska for the summer and led daily nature hikes and a 4-day sleepaway camp for kids on crutches. FINALLY, in August, I was given clearance to walk. I cried I was so happy. I went back to school in the fall, started my senior year of college and threw myself into writing my thesis and working at a local bakery and renewing my position as the Vice President of the dance team. I did lots of yoga and lots of swimming as per the surgeon's instructions. I had my 6-month CT scan done in December right before Christmas break and drove down to Anchorage, AK for the holidays. During the first three weeks of Christmas break I noticed an increasing pain in my right knee, sometimes so bad I couldn't walk. I ordered my CT scan results to be sent to me and as I read them, the dread I'd been feeling congealed into a hard knot in my stomach. After four months of two-leggedness, my tumor had grown back. Two months later I was scheduled for surgery in March 2012 with Dr. Conrad in Seattle. This time, they had to take the bone graft from my left hip and it was a far more sizable chunk than the first surgery. I was told I would DEFINITELY not be able to run, ski, do gymnastics, dance or play ultimate frisbee again. I spent another 5 days in the hospital and was released to endure my least favorite flight back to Alaska. This time things seemed to be looking up. I bought myself a ticket to Hawai'i and spent a month with my aunt and uncle and grandma recovering in paradise. I returned home to graduate from the University of Alaska Fairbanks with my Bachelor's in Natural Resources Managament in May and walked accross the stage and received my diploma on crutches. By this time even my professors had that "I'm so sorry" look on their faces. But I remained optimistic! I was allowed to walk again after only two months on crutches and resumed my hiking, nature tour guide position in Homer for that summer. I spent the next 3 years being a 20-something. I moved to Anchorage, worked as an environmental educator for the US Fish and Wildlife service, coached kids in cross-country skiing and even (with the disapproval of my doctor) trained for and completed the original marathon in Athens, Greece with my then-fiance. 3 months after this huge milestone I began having a familiar pain and pressure in my right knee. After initial x-rays my doctor told me I was to return to Seattle for my 3rd surgery. After weeks of coordinating with the hospital in Seattle, filling out paperwork with my job and paying over a thousand dollars in airfare and hotel costs, I made it to Seattle for my April 23rd appointment at the Seattle Cancer Care Alliance. After studying my CT scan, the ever-wonderful Dr. Conrad told me he thought that maybe surgery wasn't going to cut it this time. He explained how rare it is for these types of tumors to recur this many times and after such a long period of remission. He called in the rest of the medical Oncology and we all discussed the pros and cons of a new chemotherapy drug that had recently been approved to treat Giant Cell Tumor of Bone. My fiance had concerns about the side-effects of the drug and the medical oncologist warned me that before starting the chemo I would need to undergo reproductive preservation; freezing my embryos or eggs so that I could have children in the future as the chemo would damage my reproductive system. Unfortunately my hormones were not at the correct levels and I had a large cyst on one of my ovaries preventing them from starting the hormone therapy while we were still in Seattle. Several hundred more dollars later we were back in Anchorage and I was back at work, and under the care of a new gynecologist getting blood tests every three days to monitor my hormone levels. Within two weeks I was cleared to start the hormone therapy. Working with the Seattle Repriductive Medicine clinic (of course there are no faiclities that do egg harvest and preservation in Alaska) I had many of the drugs paid for by Livestrong, and various other cancer support agencies, however even with the 20% cancer discount I was still billed $5,028 dollars for the whole process as my insurance does not cover reproductive preservation even in the face of chemo. I started giving myself the daily hormone shots in my father's hopsital room where he was lying near death after an infection brought on by his cancer (Multiple Myeloma) and the doctors were scrambling trying to figure out what was wrong with his kidneys. Six days later I was back in Seattle, traveling to the clinic every day by bus to have my blood drawn and hormone levels taken and an ultrasound done to count my eggs until I was at the correct levels for surgery. I took the bus at 7am to the Seattle Reproductive Medicine clinic, had surgery, and was transported back to my hotel in a medical cab to recover for 24 hours before I packed, and flew back to Anchorage by myself. I had my first dose of chemo 48 hours after my egg harvesting surgery and went back to work 4 days later.
My dad would remain in the hospital for the next three weeks, to be diagnosed with amyloidosis which had effectively shut down his kidneys and his digestive system. We had a family meeting with all of the doctors and all of my 5 brothers to decide how my dad wanted to spend the last few months of his life.
I spent the whole summer, sick, in pain and exhausted from chemo, working full time and spending as much free time as I could at my parents' house, visiting with all of my brothers and their children, all up for the summer to say goodbye to my father. I flew back to Seattle in August to have my tumor checked and Dr. Conrad and Dr. Loggers looked excited and showed me how much bone I had regrown with the chemo and that he should be able to do surgery in a few months and remove the tumor for good. Feeling ecstatic I returned home to Alaska with the good news. My surgery was scheduled for October 1st. My dad decided to stop dialysis and died on September 6th. I flew to Seattle on September 27th with my fiance again and on the 28th was told the amazing news! I was a best-case-scenario chemo patient! I had re-grown so much bone that the team thought I should just keep doing the chemo indefinitely until it either stopped working or there were no signs of tumor left. I returned to Alaska and to work, feeling overjoyed and started running again. A month later my fiance who I was preparing to move to Colorado with broke up with me. I finished my last day of work on November 25th, 2015 and started my preparations for moving to Colorado to start nursing school (I had decided by this point that fiance or not I had been waiting to go to nursing school for three years and was excited about moving to Colorado nonetheless). I had my last dose of chemo at my Anchorage oncologist on December 23rd, and have an appointment scheduled with the University of Colorado Cancer center on January 13th, 2015. My knee started hurting again. And popping, and twinging. A CT scan has been ordered in Colorado to search for the likely recurrence and determine if the chemo has indeed stopped working. I'm trying not to imagine having surgery during the first month of nursing school. I'm trying to imagine where I will get the next $10,000 to pay for treatment and surgery and still pay my tuition for nursing school. I'm trying my best to stay positive.
Organizer
Adriana Amaya
Organizer
Anchorage, AK