I last reported, many months ago, that a small tumor was found on my eye adjacent to the cornea. I met with an eye surgeon at UNC and he wanted to try a chemotherapy drop in my eye to shrink or completely dissolve the tumor. The course was three weeks of using the eye drops four times a day, then three weeks off and then three weeks on again. Near the end of the second three week course, I began having horrendous pain in and around my eye, the whole right side of my face ached and even the dimmest of lights felt as if I were looking directly into the sun. My local eye doctor said that my iris and ciliary muscles were going into spasms. He dilated my eye hoping that would relieve the spasms for a few days and prescribed an antibiotic gel. Unfortunately, something about the gel made it to feel like I had squeezed slivers of glass right into my eye. At that point I decided that I could not go through a third course of the chemo treatment. Although the eye surgeon told me that the surgery would be even more painful, at least that would be the end of it, rather than trying another course of drops and then maybe having to have the surgery. This was around the beginning of November.
The anticipation of someone cutting into my eye was somewhat balanced by the expectation that all of the uncertainty and the treatments would be over with; however, my surgery wasn’t scheduled until January 10, 2011. It was a very long and anxious wait. Before going to bed on the 9th, I did all the prep I was supposed to do, which amazingly was to use an anti-biotic wash from my chin down to my toes, but not near the eye. As prescribed, I didn’t eat or drink anything after midnight except for my morning dose of Gabapentin (for my peripheral neuropathy) and a Xanex (so possibly I wouldn’t be a complete nervous wreck on the three hour drive to Chapel Hill). As we left our house at around four in the morning, a few snow flurries began to float down. Here in eastern North Carolina, it almost NEVER snows. Chapel Hill was supposed to have snow, but it was predicted to start well after we were to be at the hospital. I leaned my seat back, closed my eyes and let the Xanex take me to a calm and sleepy place. About forty- five minutes to an hour into the trip, Doug pulled the car over and told me we were turning around. I sat up and all I could see was white. I blinked my eyes thinking that they were just trying to mix me up, but the scene didn’t change -there was nearly four inches of snow on the road and we were in a white out. All I wanted to do was get to the hospital and get this business over with. We were yards away from getting on I-40 and I begged Doug to keep going, the highway had to be clear. We watched several cars head down the entrance ramp onto nothing but white. Knowing that most of eastern North Carolina had few if any snow plows and that drivers had little to no experience on snow covered roads, he turned the car around. I was sobbing with disappointment and frustration, soaking the blanket I had pulled over my face so the bright white of the snow wouldn’t hurt my eye. I called and canceled my surgery and we made the forty-five minute drive home in two and a half hours, in a slippery, blinding snow storm. We ended up with over five inches of snow on the ground and even the Marine Base closed for the day.
My surgery was rescheduled for February 10, but that again pushed back to February 28 as the doctor was not going to be available. I was devastated, depressed and downright angry. Life was proving itself to be quite unfair.
Around the same time as my eye issues began, my sister was diagnosed with breast cancer. We didn’t have any of the genetic markers for familial breast cancer but it was still suspicious that our aunt and her oldest daughter also had developed breast cancer. We lived a block away from them growing up, so maybe there were environmental factors (did Aunt Adele serve the same canned peaches for desert as out mom did? Hum, I need to ask….) or maybe it was just one big unfortunate coincidence.
So all Fall my sister and I would try to validate each other’s fears, frustrations and anger through text messages and emails. I tried to give her hope and a positive take on all she was going through. We’d have our own private pity parties when either one of us needed them, but I continued to encourage her to fight on and look forward to the end of the treatments and the beginning of again living cancer free. As I awaited my delayed surgery, I couldn’t seem to muster any of that optimism for myself.
Then something happened that changed my entire focus. I will post the details at a later date, but my focus was realigned to fighting my insurance company which since early February has been an almost daily battle.
I did finally have the surgery, which turned out to be a breeze. I told the doctor that I don’t do good on Percocet, it makes me feel like bugs are crawling all over me and if I take enough, I even see them… so he prescribed Vicodin. Between the Vicodin and Kentucky Fried Chicken Doug and Sarah went out and got me for dinner, I was pretty happy! The stitches were a little uncomfortable, but nothing like the chemo eye drops, so all in all, the surgery was the way to go.
When I returned for my one week check up with the resident (my doctor was away), I got a somewhat confusing pathology report: melanocytic nevus and tissue changes consistent with mitomycin C (the chemo eye drops) treatment. Basically, a mole. A mole? On my eye ball? Are they kidding me, I went through all that pain and worry for a mole? Was there ever any cancer? Well, it seems that they don’t really know. There could possibly have been some malignant cells that the chemo drops killed, but they don’t really know.
At my one month follow up, the surgeon was there, but when I asked him about the pathology report he said he really didn’t know what it meant and I would have to see the consulting doctor I had also seen back in the Fall. However, that might be a problem because of my insurance (my “insurance” post will explain). When I also asked about the fact that my tear duct was now clogged due to scaring from the chemo drops, he said that this other doctor was also the one to consult about that also. Insurance be damned, I made an appointment with that doctor.
At that visit he said it was unlikely that it was cancer and should not be a problem in the future, but his resident said that it didn’t prove that I didn’t have any malignant cells which could be or have become a melanoma. They will follow up with me in around six months. He said he could fix the problem with my tear duct, but we had to go to call the insurance company to see if that was covered.
To add to the ‘funness’ of the situation, I had driven up to Chapel Hill with Sarah so I could spend the weekend helping her set up her apartment. Doug was going to drive up for my appointment and drive me home. He calls me around the time he would be leaving Jacksonville to tell me that he wasn’t feeling so good. In fact, the EMS had just left. About a week or two prior his atrial fibulation had started again he had called 911 when he was having trouble breathing. He didn’t think he needed to go to the hospital since they assured him he wasn’t having a heart attack, but he didn’t think he should drive up to Chapel Hill. Duh huh! He assured me he was OK, but at that point, all I wanted to do was get back to Jacksonville. I didn’t have a car and Sarah’s car was in the shop. I asked Sarah to find me a rental car, but instead she called my friend Marion.
They insisted I go to my eye appointment which, not only did Marion drive us to, but afterwards she drove me all the way home to Jacksonville. About five minutes into the drive home I realized that I was in no shape to have driven myself! Also at the eye appointment the resident preformed a minor surgical procedure to enlarge the tear duct that had scarred over from the mitomycin C. On a positive note, it was one way to get Marion to come down to Jacksonville and visit!
Oh, and when we went back to Sarah’s apartment to get my stuff, Sarah gets a letter telling her that her COBRA health insurance had been canceled. More on insurance companies in my next installment…
The anticipation of someone cutting into my eye was somewhat balanced by the expectation that all of the uncertainty and the treatments would be over with; however, my surgery wasn’t scheduled until January 10, 2011. It was a very long and anxious wait. Before going to bed on the 9th, I did all the prep I was supposed to do, which amazingly was to use an anti-biotic wash from my chin down to my toes, but not near the eye. As prescribed, I didn’t eat or drink anything after midnight except for my morning dose of Gabapentin (for my peripheral neuropathy) and a Xanex (so possibly I wouldn’t be a complete nervous wreck on the three hour drive to Chapel Hill). As we left our house at around four in the morning, a few snow flurries began to float down. Here in eastern North Carolina, it almost NEVER snows. Chapel Hill was supposed to have snow, but it was predicted to start well after we were to be at the hospital. I leaned my seat back, closed my eyes and let the Xanex take me to a calm and sleepy place. About forty- five minutes to an hour into the trip, Doug pulled the car over and told me we were turning around. I sat up and all I could see was white. I blinked my eyes thinking that they were just trying to mix me up, but the scene didn’t change -there was nearly four inches of snow on the road and we were in a white out. All I wanted to do was get to the hospital and get this business over with. We were yards away from getting on I-40 and I begged Doug to keep going, the highway had to be clear. We watched several cars head down the entrance ramp onto nothing but white. Knowing that most of eastern North Carolina had few if any snow plows and that drivers had little to no experience on snow covered roads, he turned the car around. I was sobbing with disappointment and frustration, soaking the blanket I had pulled over my face so the bright white of the snow wouldn’t hurt my eye. I called and canceled my surgery and we made the forty-five minute drive home in two and a half hours, in a slippery, blinding snow storm. We ended up with over five inches of snow on the ground and even the Marine Base closed for the day.
My surgery was rescheduled for February 10, but that again pushed back to February 28 as the doctor was not going to be available. I was devastated, depressed and downright angry. Life was proving itself to be quite unfair.
Around the same time as my eye issues began, my sister was diagnosed with breast cancer. We didn’t have any of the genetic markers for familial breast cancer but it was still suspicious that our aunt and her oldest daughter also had developed breast cancer. We lived a block away from them growing up, so maybe there were environmental factors (did Aunt Adele serve the same canned peaches for desert as out mom did? Hum, I need to ask….) or maybe it was just one big unfortunate coincidence.
So all Fall my sister and I would try to validate each other’s fears, frustrations and anger through text messages and emails. I tried to give her hope and a positive take on all she was going through. We’d have our own private pity parties when either one of us needed them, but I continued to encourage her to fight on and look forward to the end of the treatments and the beginning of again living cancer free. As I awaited my delayed surgery, I couldn’t seem to muster any of that optimism for myself.
Then something happened that changed my entire focus. I will post the details at a later date, but my focus was realigned to fighting my insurance company which since early February has been an almost daily battle.
I did finally have the surgery, which turned out to be a breeze. I told the doctor that I don’t do good on Percocet, it makes me feel like bugs are crawling all over me and if I take enough, I even see them… so he prescribed Vicodin. Between the Vicodin and Kentucky Fried Chicken Doug and Sarah went out and got me for dinner, I was pretty happy! The stitches were a little uncomfortable, but nothing like the chemo eye drops, so all in all, the surgery was the way to go.
When I returned for my one week check up with the resident (my doctor was away), I got a somewhat confusing pathology report: melanocytic nevus and tissue changes consistent with mitomycin C (the chemo eye drops) treatment. Basically, a mole. A mole? On my eye ball? Are they kidding me, I went through all that pain and worry for a mole? Was there ever any cancer? Well, it seems that they don’t really know. There could possibly have been some malignant cells that the chemo drops killed, but they don’t really know.
At my one month follow up, the surgeon was there, but when I asked him about the pathology report he said he really didn’t know what it meant and I would have to see the consulting doctor I had also seen back in the Fall. However, that might be a problem because of my insurance (my “insurance” post will explain). When I also asked about the fact that my tear duct was now clogged due to scaring from the chemo drops, he said that this other doctor was also the one to consult about that also. Insurance be damned, I made an appointment with that doctor.
At that visit he said it was unlikely that it was cancer and should not be a problem in the future, but his resident said that it didn’t prove that I didn’t have any malignant cells which could be or have become a melanoma. They will follow up with me in around six months. He said he could fix the problem with my tear duct, but we had to go to call the insurance company to see if that was covered.
To add to the ‘funness’ of the situation, I had driven up to Chapel Hill with Sarah so I could spend the weekend helping her set up her apartment. Doug was going to drive up for my appointment and drive me home. He calls me around the time he would be leaving Jacksonville to tell me that he wasn’t feeling so good. In fact, the EMS had just left. About a week or two prior his atrial fibulation had started again he had called 911 when he was having trouble breathing. He didn’t think he needed to go to the hospital since they assured him he wasn’t having a heart attack, but he didn’t think he should drive up to Chapel Hill. Duh huh! He assured me he was OK, but at that point, all I wanted to do was get back to Jacksonville. I didn’t have a car and Sarah’s car was in the shop. I asked Sarah to find me a rental car, but instead she called my friend Marion.
They insisted I go to my eye appointment which, not only did Marion drive us to, but afterwards she drove me all the way home to Jacksonville. About five minutes into the drive home I realized that I was in no shape to have driven myself! Also at the eye appointment the resident preformed a minor surgical procedure to enlarge the tear duct that had scarred over from the mitomycin C. On a positive note, it was one way to get Marion to come down to Jacksonville and visit!
Oh, and when we went back to Sarah’s apartment to get my stuff, Sarah gets a letter telling her that her COBRA health insurance had been canceled. More on insurance companies in my next installment…
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