As some of you (friends) know when I was 16 I was diagnosed with a very aggressive form of cancer. I have not always been completely honest with how this worked. From here on out however I will be sharing nothing but the truth.
The truth is that when I was 11 yrs old, I had some sort of testicular trauma (swelling, pain etc.). I was rushed to the emergency room, where the doctors were sure I had a testicular torsion. A sort of tangling of the wires that connect the testicle to the main body inside the scrotum (sack). The solution to this is surgery, usually the removal to the testicle. However, a doctor in that hospital wanted to use a new form of ultrasound technology to check this diagnosis. They found was that the cause of the problem was just an allergic reaction, easily fixed with medication.
This had now become part of a bigger problem however. During this ultrasound they also found something called testicular microlithiasis. Microlithiasis is a condition found in about 0.5% of men where calcium forms inside the testicle in microscopic deposits. It is non-lethal, unnoticeable and aside from its rarity almost completely unimportant with one major exception. Microlethiasis had been seen as a major warning sign for testicular cancer in older men. This has since been hotly debated within the medical community but, I seem to be an example of that connection. Afraid I would develop testicular cancer as I developed I was placed on periodical tests and check up a few times a year to make sure I was not developing a tumor.
I did this for several years and my doctors began to doubt the connection between microlithiasis and testicular cancer in this case. In November of 2005, I discovered a large lump on my left testicle. I went to my Urologist, and he confirmed that there was a tumor inside my left testicle. He performed an Inguinal Orchiectomy and removed my left testicle, replacing it with a prostetic version. The cancer however has spread from my left testicle, skipping my right testicle and going straight to my lungs in 10 various little spots. My right testicle was not removed or replaced but I was going to have to undergo chemotherapy to rid my lungs of the already spread cancer. I started in chemotherapy in January of 2006 and finished in May of 2006. I was 16 and a Junior at Henry County High school. I underwent 3 3-week cycles of chemotherapy. My first bout with cancer was very hard and my cancer was aggressive but it was a rigorous sprint, not a marathon run. The estimated 3 rounds of chemotherapy did the job and the cancerous spots were gone from my lungs, I was free to go.
Afterward, I had to have much more regular checkups, from many different doctors in many different fields. Chemotherapy destroyed my body’s ability to do and regulate many things on its own including my thyroid, stomach acid. The chemotherapy even induced adult ADHD which I take medication for. Over the last few years I have been getting periodical tests and checkups of every kind to make sure that the cancer was not coming back. While a recurrence of testicular cancer is not common after the first treating, in 80% of all cases both testicles are affected, something that had not happened to me the first time. I was told that after the first 2 years after chemotherapy the chances for a recurrence would be much slimmer.
After I returned to school I chose to repeat my junior year and finish high school at Shelby County High School. I never liked or fit in at Henry County. The way I had been treated by students and the HCPS administration both before and during my bout with cancer coupled with the way they had handled the situation in general left me with a very bad taste in my mouth. I decided to go somewhere with less of a backwards culture about education and acceptance. This leads me back to the beginning of this blog. Many of you will probably want to know why I was never truthful or willing to share the story in its entirety during high school or college despite the change of scenery. I don’t really have an answer. My bout with cancer caused many social and emotional issues that I am still dealing with. I have never been ashamed of what has happened to me, or what body parts I’ve had removed for the sake of my own livelihood. However I told myself that not everyone would be able to deal with it. They could not be expected to act immaturely with such information. I did not want to give anyone leverage to make fun of me or for anyone to see me differently. I knew that it did not bother me but, I also knew how some would react, why give them that chance? I now see that maybe I was a little to worried about what others would say or my reputation. Ahh, the joys of High School. I am very proud of my experiences and accomplishments however.
Now the part that most of you have been reading to find out. This Monday, June 8th 2009, I went in for a follow up with my Oncologist (cancer doctor) for a periodic cat scan on my chest. What she found was 2 cancerous spots on my lungs. Seemingly different in shape, size and placing than any of the original 10 spots. Obviously, I will have to undergo chemotherapy again to get rid of these two spots. The real issue was not in dealing with these two spots, but the origin of them. What my doctors are worried about is whether these two spots are a new case of testicular cancer or a recurrence of the previous one. Depending on which kind it is will mean vastly different treatments. I will be going to Indianapolis Wednesday June 17th to learn which kind of cancer it is. My Oncologist is sending me up there to see a leading expert in the field of Testicular Cancer.
If it is a new case, that means it must have originated from the right testicle and spread to the lungs. This will result in the immediate removal of the right and I will proceed to chemotherapy similar to what happened with my original case.The treatment won’t be easy but it certainly wont be any worse than it was last time I went through it. I will also be able to take my treatment down here in Louisville if it is a new case. I have had some odd goings on lately with my testicular check ups, that may or may not support this as the answer.
Now the worse news. If it is not a new case then it will have to be a recurrence of an old case. This would be bad. I will have to under go harder chemotherapy over a much longer period of time. I will also have to stay in Indianapolis for treatment and under go other special treatments such as stem cell therapy. Either way my immune system will be severely weakened, but this will probably be more extreme. It will also be a much harder recovery and will take a larger toll on my body with more unforeseeable complications. The chance of a third recurrence (something we definitely want to avoid) also goes up. I would also think that at this point my right testicle will be coming out regardless for safety sake.
So these are my options. I will be in Indianapolis the 17th, but I might not necessarily have any answers then. This is just my first meeting with the new specialist. Either way this will take up the rest of my summer. No jobs, very little going out and probably no (90%) NKU in the fall. I will return in the spring to my beloved state university.
I will be using this experience however as an opportunity to create a truly special project. I will be blogging, recording, twittering and podcasting my entire experience. I will keep everyone up to date through my Twitter, my website, Facebook and especially my multimedia dcumenting. I’m going to make this into a giant multimedia documentary. Why? Becuase thats what I do. That’s what I WANT to do. Its how I’m going to deal. I refuse to make the same immature mistakes I made as a kid, by shutting eveyrone out. I’d like to thank everyone for taking the time to care and read this massive blog explaining everying. If you would like to ask me any questions or say anything, my email is DakotaGraves@me.com or you can visit my website www.DakotaGraves.com for more information and content.
