My name is Aimee Niree Dowell, I am twenty years old and I have a metastatic, papillary cancer called Translocational renal cell carcinoma. Renal cell carcinoma is kidney cancer. Kidney cancer is usually an old man’s disease, translocation renal cell is usually found in small children up to the age of five. I am obviously in neither of these groups, the following is the story of my conquest, thus far, with this terrible disease.
I was born into a family that is pretty close knit and has much love for each other. My parents were married in November 1980; my oldest brother Dean was born shortly after in April 1981; two years later Ben was born in December 1983; finally, 1990 came along and I was born in Madison, Wisconsin. While growing up, I was closer to my brother Ben. Though there are seven years difference in age between the two of us, he still played games with me and spent time with me while we grew up. Mom went to school to be a C.N.A. when I was a toddler and also held a job, so I had many babysitters. My Mom spent as much time as she could with me when she was off. One of the activities we did together was planting flowers in the spring. One of these said flowers, that has been planted every year, is the marigold. Well this flower was planted every year up until 2009, the year I graduated high school, these beautiful flowers were absent that summer because of the rush we had been in during the spring, but we aren’t to that part quite yet.
Through elementary and junior high I was a smart, independent, child, usually trying my best to succeed, never trying to fit in or to hide into the background; I have always embraced my individuality. As soon as I learned to read, I knew I loved it and I read all the books I could get a hold of. I also loved making up my own stories, and in third grade after studying poetry, I started writing poetry all of the time. I always had good grades in my classes, and teachers always said how I was a pleasure to have in class.
In 2000, my brother Dean was in an accident were he broke his back after falling inside of a grain bin. A few years later my Dad had three round bails fall back on to him breaking his femur and his pelvic bone. That October, the day after my thirteenth birthday, my father had a heart attack caused by being taken off of blood thinners too soon. All of this was very stressful and scary for our family, but we pulled together and got through it.
In the summer of 2005, before I entered high school, a friend and I went on a bike ride that went wrong. While going down a steep hill not too far from a good friends’ house, I lost control of the bike that I was riding. All I can remember from this bike wreck is going over the handlebars. Thankfully my friend kept calm even though I was unconscious and covered in blood. He went to the closest house where he called 911 and my mother. I was in a coma, scale 7, for a week. I had sustained a traumatic brain injury, a torn rotator cuff, a ruptured spleen, and scars that I still have today. I was in the hospital for 28 days, and in rehab for about 21 days; relearning everything that is necessary to live a close to normal life. Still today, I suffer from headaches from my accident, I no longer take meds for them. I stopped taking those medicines right before my senior year, wanting to end my high school years un-dependent of any medicine that promised to relieve the pain but didn’t.
I started, my freshman year with all the same classes, few accommodations, and followed out my high school career with a 3.2 GPA while taking college bound courses and over scheduling myself most of the four years of high school and seldom having a study hall. I had been told my freshman year that a C or a D was all that was expected of me. I would never allow myself to slack off and achieve less than what I know I am capable of just because other’s expectations of me aren’t high. Obviously, I live to shatter expectations and to prove others wrong. I have never wanted and never will want to be written off as average or run of the mill woman. I have overcome too many obstacles in my life not to have a self-esteem and not believe that I am awesome and very much loved. In 2009, my graduation year, Mom and I did not plant any Marigolds because we were too busy planning my graduation party and landscaping the gardens in front and behind our modest country home. I went to NYC for my class trip, my going was almost completely paid for by my ambitious and determined fundraising. Though the trip was fabulous, I was pretty fatigued, but wrote it off as normal. Throughout my high school career I was sick a lot and missed a lot of school senior year not being an exception, I missed the most my senior year. Also senior year I suffered from a few UTIs and experienced more pain than usual in my lower back. I didn’t know what was going on, but figured it must be normal if the doctors weren’t worried. Right before I went to see some friends in New Orleans, during late summer 2009, I had my third UTI in the past year. On this trip, I was also very fatigued but wrote it off to the change of weather and bad shoe choice. A few weeks after I got back from this trip, I was going to college in a small town about thirty minutes north west of my parents’ home. The weekend I moved in I was feeling fatigued again and felt like I was getting sick, but wrote it off to the hot weather. The next few weeks I was busy with my fifteen credits of classes. When I wasn’t in class, I was either making friends in my dorm or attending a club meeting. I was involved in art club, Tai Kwando, swing dance, an anime club, and a club promoting equality; GLBT. Three weeks into classes, I started taking naps in between classes. That Thursday I noticed dark blood in my urine and decided if it didn’t get better that I would make a call to the on campus wellness center. I finished my classes that week and started studying for the upcoming week of tests. On Sunday, I received a call from Dad asking if I wanted to join him and mom that afternoon for some shopping and lunch. Of course I said yes ~ what with me being a Daddy’s girl and missing spending time with my parents. While out with my parents, I forgot to tell my mom about the blood in my urine because I was enjoying my time enough to forget about my troubles. Seeing as my mom is in the health care field my father, brothers and I always have came to her for advice about medical problems.
Monday, September 21, 2009, I woke up too late to go to my first class, a good thing simply because the pain in my back wasn’t enabling me to do too much. I barely was able to get dressed that morning. I placed a call to the wellness center and made an appointment for that morning. At my appointment I was informed that it was not a UTI, the blood in the urine was the color of dark cola. I was told that I either had a kidney stone or a kidney disease. They needed blood tests done to figure out what was wrong; therefore, they sent me to the nearby hospital. I went via taxi since I hadn’t a clue who to ask for a ride with classes going on and my mother was working. On September 22, 2009, I went to the doctor and was informed that they wanted scans to be done. I asked for them to be scheduled for the afternoon because I didn‘t want to miss more class and I had a test, they kindly obliged. When I went back to my dorm, I asked a girl that lived in the room next to mine, that up till now I had never talked to, for a ride and explained the whole thing to her. She was very nice to me and agreed to take me and bring me back seeing as I was really sick and something serious was going on. Later on, I came back to the wellness center to find out the results. In the doctor’s office, I was informed that there was a mass taking up a great deal of my right kidney and that I most likely had kidney cancer. It all seemed so unreal, like a cruel joke. It continued being very hard for me to believe for quite awhile. I gave the doctor my mother’s cell number. He called her and told her the importance of her coming to the wellness center to pick me up. He explained to her that he had scheduled an appointment with an oncologist in Iowa, not too far from where we lived in Illinois, for the next day. While waiting for my mother’s arrival, I sat in a comfortable chair, crying and being told of the possibilities I had for college; such as withdrawing for the current time, but that ultimately it would be discussed more the following day when the oncologist shed more light on the situation. When my mother arrived the doctor explained everything to her. Afterwards, we went to my dorm where I grabbed a few items believing that I would be back soon, and I gave my thanks to the girl next door and told her how bad things were. Then mom and I left for home with my few belongings in the back of the car. Mom and I decided not to tell many people about what was going on. Besides Mom and me, Dad would be the only one in the family to know for quite a long time.
On the afternoon of September 23rd, 2009, I was informed that I had kidney cancer and that I should put my health first and withdraw from school. The oncologist said he would set up an appointment for the next week with a kidney surgeon in Iowa City. Because kidney cancer is fast moving, he wanted to make sure that we caught whatever was going on before it was too late. He also had a letter dictated for my withdraw from college. The next day my Mother helped me move out of my dorm room, return all of my books and all of the formalities of withdrawing from college. While cleaning out my dorm room, I also worked on saying good-bye to the few friends that I could find during a school day. When we had walked into the dorm room, there was a rose on me desk from the KAE sorority, a sorority I had been looking into joining and I had attended a small “luau” party the previous weekend with a girl on my floor of the hall. Sadly, I cannot explain adequately enough how much I was pained to leave college. I loved college, I thrived in this environment, even though I had only spent four weeks making friends, spending time in clubs, and fitting in for what seemed like in the first time in my life.
Between September 31 and October 1, I met with the surgeon who would be removing my kidney and who set up an appointment with the oncologist I would see after my surgery. It was explained to me that kidney cancer was usually found in elderly men, but they told me to hope for Hodgkin’s lymphoma; a curable kind of cancer that is generally found in younger people. Those two days were basically a blur to me. I remember mostly being told that the doctors were unsure about what I really had and what we would be doing to cure it or if it could even be cured, also they were unsure about when they would be able to get me in for surgery. October 9th was my 19th birthday, it wasn’t anything too special seeing as my mind was more occupied by what was going on medically. My brother’s, their significant others, and my few month old nephew attended the small get together at my parents house for my birthday. They still didn’t know what was going on, we were still keeping quiet about it until we really knew what was happening. I was suffering from severe pain still. October 14th I was in such severe pain that I had a trip to the ER where they called Iowa City scheduling the nephrectomy for the following Monday, October 19th. Some time in those 5 days we told all of the family members about what was going on, catching them up on what little information that we knew. October 19th came with no surprises, we left early that morning before the sun rose, as it was a 2 ½ hour drive to Iowa City and my surgery was scheduled to be first. Ben and his fiancée Becky wanted to be there with me so they followed behind us to Iowa City in their own car. There isn’t much to say about that day besides that everything went smoothly, they removed my right kidney, the surrounding lymph nodes, and the adrenal gland. They had made an incision about 12 inches long, diagonally across the front of my stomach. This scar has healed up beautifully in the past 18 months. I was in the hospital from Monday till the next Saturday. My mom stayed with me for most of that time. Wednesday wasn’t a very good day at all, besides all of the pain I was in, the doctors were worried because my temperature was elevated along with my heart rate. They sent me for some scans and found fluid in my lungs. My mom immediately called both our pastor and a prayer warrior from my church, both know me well and are good friends of mine. They started up the prayer chain for me that night, though there had been many prayers sent to God pertaining to my cancer way before this.
The next morning I was scheduled for surgery, when they scanned me again to check the placement of the fluid, it was no longer there. We praised God for this miracle. Not only that, but my heart rate and temperature was back to normal. This all helped me in being ready for leaving that Saturday. A few weeks prior to my surgery, my family had gone through the efforts to turn the den, the small room off of our living room, into a bedroom for me. We knew during my conquest against cancer there would be times when I would be sick and weak and not strong enough to go upstairs. If I was lucky and never got that bad, I would at the very least have days where I would be tired. So I would have a bed downstairs where I could take a nap. We knew for sure though that it would be a few weeks after my surgery before I would be able to climb the stairs to my room, so some of my clothes and belongings were placed in the room for when I came home. I came home Saturday and that night two friends of mine came over. One who I had just met the week prior, his name was Ty. Ty was the friend that was there for me the most during the next 1 ½ months before things in his life took a turn and we stopped communicating as much. We are still friends today, just not as close as what we were when we first met. Over the next few weeks, I received get well cards from everyone that knew my family and me. What sticks out the most in my memory of this time is receiving package of homemade get well cards from my old high school’s FFA. During high school I had been involved in FFA for all four years, was secretary once and reporter twice for the chapter, and I was even crowned Sweetheart Swirl queen, at the dance that FFA hosted my senior year. It meant a lot to me to receive cards from my old chapter telling me that I was in their thoughts and prayers. It also amused me to see how many times my name was spelled wrong, and what spelling they would use. November 6, 2009, was my first benefit. It was put on by a my Mom’s employer at a bowling alley. A lot of people were invited, even more showed up. My friend Ty drove an hour from where he lived to be there with me. It was a good thing that he did because not many friends from high school came, or at least not the ones I had expected. Many coworkers of my parents showed up, many relatives from my dad’s side came, teachers from my high school and all of my brother’s friends ~ I was like a little sister to them. Few friends from high school showed up to my benefit, keep in mind the school I went to was pre-k through senior year. My best friend that I had known since I was 5, didn’t drive the hour from college to see me and didn’t take the time after the benefit to apologize for not coming. My friend who called 911 for me in 2005 came and I had only known him since 2003. Two other friends came and they had only known me for a few years. All of this pains me, because I barely hear from them now. I only point this out because the word ’cancer’ scares people, it scares them even more when it is being used to talk about someone their own age. A lot of friends have lost contact with me because what I’m going through scares them; it very well could have been them. You are going to lose friends through life no matter what, but when you go through hard times, you really find out who are your real friends. The benefit went wonderfully and the profit made helped cover a lot of our medical costs and bills.
The following week I had scans in Iowa City. From these scans it was found that I had suspicious looking lymph nodes in my chest by my heart and lungs. To follow up these scans a biopsy was done of the lymph nodes in the chest to see if it was the same as the cancer that had been in my kidney. For this biopsy, they went down my throat to get a piece of lymph node. Around the middle of November, I started on my first chemotherapy drug - Sutent. Sutent was in pill form and I took it every night for four weeks then I would be off for two weeks. During the first round, there weren’t any big side effects. I felt basically fine. Sure I was fatigued but I was used to being tired, so it really wasn’t that bad at first. Then I started having side effects. The pigment change in my skin wasn’t bad, I didn’t mind at all, but the dry skin and severe sensitivity of my feet bothered me a lot. Early December they put me on a pill for high blood pressure. We monitored my blood pressure daily and it had been elevated (I did not mention to my doctors that around this time my friend Ty had stopped talking to me because of the problems in his life and that it was causing a lot of emotional pain on my part.) In January, sometime during the second round of sutent, I started experiencing pigment changes in my hair, my roots were coming in white and so was the hair everywhere else. I also started experiencing acid reflex so the prescribed me a medicine for that. In February and March, I started to be more fatigued and have a lot more bad days than good. My pain was also increasing steadily, the scans done in February showed that I had some arthritis in my back that could be contributing to this, but other than that everything was stable. Sometime in April 2010, I was rushed to the E.R by my mom because of a high temperature and vomiting. I saw my local oncologist a few days later and he decided to take me off of sutent right away. The toxicity in my body was too high to put me through anymore of this treatment. A few weeks later in May, I had scans and saw the oncologist in Iowa City. The scans showed that there was significant growth in the lymph nodes in the chest and that there were lymph nodes in the back of the abdomen also. The oncologist told me not to expect to be around in a few years, that my life span was maybe six months at the most. He told my mother and me just to continue seeing our local oncologist for now on because there wasn’t anything more that he could do for us that the local oncologist couldn’t. With that, he told us about some clinical trials going on, handed us information on it and sent us on our way.
Up until this point, I really must not have known how seriously ill I was. All of this was hitting me hard. At that moment, though I knew I needed people to help me through, I kind of just shut people out because I knew there wasn’t anything that they could say or do to make it better. I still had hope and faith that God would get me through and everything would be better eventually. Late May my parents and I traveled to Chicago to find out about a clinical trial. It isn’t anything really note worthy because we waited three hours for the doctor to come in excited about our insurance but as soon as he found out that our insurance wasn’t going to cover any of this he basically dismissed us; saying there really wasn’t anything he could do. In June my doctor started me on a weekly I.V. treatment of torisel. During June, I hung out with friends a lot and in late June I went on a trip with my parents to Marshfield, Wisconsin. While on torisel, I had plenty of down days and sadly the car drive to Marshfield wore me out and I was sickly most of the weekend. In July, Mom and I made a trip down to Indianapolis to see her side of the family. Most of this trip I was feeling well other than the mosquitoes were very much attracted to my blood because of the chemotherapy. I had scans not long after getting back and found out that there was growth in my abdomen but the cancer was basically stable in the chest. Up till now, the nurses always had trouble getting blood from me, my veins are small and move a lot. In August, I finally had a port placed in my chest to help with the labs and the next I.V. treatment they were planning. I started Avastin and I was sick a lot. All I remember from this time is that I did attempt to go to college taking one class every Wednesday night, but because of treatment, I missed more class than what I attended and I withdrew. In September, I had more scans that showed all around growth. It was decided that I would take a break from treatment for the rest of the month while we decided what to do next. During September, my brother Ben got married. Sadly on this day I was feeling terribly sick and wasn’t able to enjoy the day like I wish I could have. October 2010 I had my 20th birthday. I received over 300 birthday cards from friends, family, and people that they knew. My mom asked everyone she knew to send me a card and asked them to ask others as well because I love receiving cards and I read every single one. I am still in amazement at the amount of people praying for me. A lot of those cards said they were sending their prayers and best wishes. Not long after my birthday, I started afinitor – the last FDA approved drug for kidney cancer. Everything went well through October. In November, my dog Buddy who we had since about 2004 started getting sick. This dog was always close to me, he lay by my bed or in it with me, and since I had gotten sick he had gotten more protective over me. In December, we had scans that showed that everything was stable and some signs of shrinkage. This lifted our spirits a lot and we really thought that this was our miracle drug.
In February 2011, I started having trouble with my breathing and my already severe back pain was slowly increasing. Also in February, Buddy had reached the point where we had to put him down. This was really hard on all of us and still till today we miss him and probably always will. The vet said that Buddy had probably had a cancer commonly found in dogs.
In March, I had scans that told me I was having trouble breathing because the afinitor had caused pnuemonitis in my lungs. They put me on steroids. While there was growth, it wasn’t enough to be considered growth and so the results were considered stable. Throughout March, neither the breathing or the pain got better. By the end of March, I was having severe joint and back pain. I would wake up in the middle of the night in pain, not being able to walk. I had many episodes of this. One so bad that it was an hour before I could even walk again. When I went to my oncologist, he decided to take me off of the afinitor because of the pain and the breathing problems, hoping that these would clear up in about a month and I would be able to go back on afinitor. A few weeks later I was also suffering from fluid on my lungs, a cough, and a high temp flu. I was still waking up at night crying and screaming from pain, and now I’m having these terrible migraines that I had experienced all through high school again. Through this time my pain medicine was upped several different times and finally it was at a point where it was working. All that I am going to share about what I was taking is that it was a large amount of narcotics that should have had me sedated but they didn’t.
Scans were finally scheduled because of all of these side effects. Scans showed extreme growth all over but no new sites of disease. Lungs were shown to be scared and inflamed and the lymph nodes were pressing in on them. The lymph nodes in the abdomen are pressing in around the aorta. My life span at this point is not looking to good. Since afinitor was the last FDA approved drug for kidney cancer, it’s time now to start grasping for straws basically. They started me on a traditional I.V. chemotherapy of Gemcitabine used along with doxorubicin which had a 5-10% chance of working. I would rather try than to have not tried and wondered what might have been---plus all my blood counts were still good. I am young and have no prior conditions other than cancer. The first I.V. treatment I received both meds. I thought this first treatment went well, I was just tired and out of it. The treatment was on May 6th and by that Sunday, I was admitted to the E.R. for breathing problems and severe pain. My oncologist said that he hoped it was just an isolated event and that we could continue on with treatment but it was up to me. I decided that I would not continue with this treatment, having the feeling that I would be back in the hospital the upcoming weekend after the next treatment or after the next one. A few weeks later, May 18th, I started losing my hair just from the one dose I had of doxorubicin. By May 28th all of my hair had fallen out. My breathing had continued to get worse and that weekend I went to the ER because I could barely catch my breath, my throat was swelling, and my face was purple. After a few hours I was sent home with an inhaler and the following day my oncologist made a call to get me an oxygen machine for at home and portable oxygen as well. Even though it was a holiday, the oxygen machine was set up just two hours after he called and I was feeling much better. Without the oxygen machine, my oxygen levels are around 80% and with it I am around 94%.
This may all sound sad, the fact that I am months away from turning 21, have lost my pretty hair, there aren’t any treatments out there left for me, and that my lungs are so compromised that I have to be on oxygen at home and limit my activities outside of the house but I believe this is only a minor setback. Things will get better, after all, God is the greatest physician we have and my faith is strong.
UPDATE: June 8, 2011
I was in the hospital since sunday night. I just came home today. I was having bad pain in my chest. The ER doc thought it was a clot so they treated me for it and the pain went away. My oncologist kept me in the hospital to make sure everything was fine. I'm on a different pain med now. I had scans Monday and found out that the cancer has grown more [all possibilities are still exausted, radiation or surgery would just make it worse as it would be too much stress on my body. I actually saw my doc tear up while telling me this. He doesn't want me to give up] My right lung is the most effected lung. There is nothing visable to explain the blood in the urine but the doctors are worried about the kidney amd cancer progression. Hospice is now involved. Basically, no more ER visits. This makes things easier on my mom.
Written by: Aimee N. Dowell
Sadly Aimee at the age of 20, graduated, earned her warrior wings on June 14, 2011. She will be loved and missed by her family, friends and all of us in the Kidney Cancer Warriors support group who grew to know and love Aimee. She was an inspiration to all of us! KCW sends our condoloscenses to Aimee's mom, Brenda, and the rest of her family and friends.
3 comments:
Hi Aimee, just want to let you know that I think of you often and you are in my prayers. May God be with you..
One of the most amazing young women I have ever had the honor to know.
RIP Aimee.
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