So, here we are on the one month anniversary of my cancer diagnosis! Today also marks the one week anniversary of my return home from the hospital. I have probably seen more doctors in the past month of my life as I have seen in all 38 years of my life. Without question - life has changed forever for me. Amazing what one thing can do to completely alter so much.
My first week home was filled with lots of time spent on the couch in front of the television. The eye patch came off on the 2nd day, and it was the first time that I got to see what my eye looked like after the procedure. It's not pleasant to look at, but I was expecting far worse. As each day passes, I see more and more whiteness returning to my eye. The swelling is going away as well, and my eye is more or less centered by this time. I still have some progress to make before returning to my pre-surgery look, but I am happy with my recovery so far.
One damper on my recovery has been the fact that I ended up coming down with bronchitis. How depressing is that? Because of this added affliction, I don't get a great sense of how quickly I am really bouncing back. But, I'm on antibiotics and should be knocking this infection out within days. I guess the radiation and surgeries really wore down my immunity, which is not surprising. I would have much rather preferred to only deal with one thing versus two. But...hey....I'm off work, what else do I really have to do?
I've spent a lot of time researching what my future treatment might look like should I come back as having a Class 2 tumor. This is the worst case scenario, and means that there is a high risk of metastasis in the near future. I found Phase 2 of the clinical trial that I am currently enrolled in at the Cleveland Clinic. Upon learning the results of my biopsy, I may have the option of enrolling in this additional treatment plan. Essentially, the idea behind it is to prolong or even prevent the time before metastasis. It involves two rounds of chemotherapy followed by 6 months of injections 3 times per week to interfere with the production of certain cells within the body. The treatments themselves do not sound like a walk in the park and the side effects are those that you would expect with aggressive cancer treatment - fatigue / nausea / hair loss / depression / weight loss. My current thought is that I want to go to see Dr. Singh armed with information. The only surprise I want to come my way is the actual result of my test. I have to prepare for the worst case scenario. I do not have to prepare for good news - I have to prepare for bad news. It's the only way I can think of to get through this without going completely crazy. You know.....you hope for the best, but expect the worst.
I really look forward to returning to normal activities - running, my gym routine, work, Happy Hour with friends, dinners out with Graham, visiting places that aren't medical centers, living a normal life!!!!
A sick reminder of my disease returned to me yesterday, which I strangely take as a sign that my eye is healing from the surgery. Those fun and pretty little flashing lights which were the final sign that drove me to see an opthamalogist have returned. I may never get rid of them and I knew this going into the treatment, but after a week passing without any sort of lights show in my right eye - I was a little surprised to see their return. But, again...to me, this means that my eye is healing from the trauma of the surgery and is getting back to its good ole self, fancy light show included!
Monday, January 16, 2012
Wednesday, January 11, 2012
Well....that was easy?
Back home in Buffalo after the plaque radiation in Cleveland. It certainly feels good to be home - back in familiar surroundings, my animals are around me, and my freedom of movement from room to room has returned as has much of my energy. What has not returned is my eyesight. I just took the patch off from surgery to do my first treatment at home with the medicated eye drops and the antibiotic cream. Big time double vision in my right eye. I couldn't close it fast enough after getting it open! I'll spare a lot of the details other than to say the eye is very red...not much white to see, and there seems to be a lot going on over in the corner of my eye near my temple. That must be where the stitches are. There is certainly something there because that area seems swollen. Anyway - the clean patch feels good on my eye now.
The hospital visit was not so bad. Graham and I arrived a day early and settled into the hotel that would become his new home for the next four days while I lived in the hospital. We started our adventure by taking a walk around the Cleveland Clinic campus: from the hotel to the Cole Eye Institute and various other points of interest. We ended our last night together with a fancy French dinner at L'Albatros. It was a great meal! I started with the French Onion Soup, we split a chopped salad, three different types of cheeses ranging from soft to hard and light in flavor to funky, steak frites for dinner and then a brownie for dessert. Oh...and a bottle of Malbec and a decaf cappuccino! Gluttony has always been my favorite vice, and I made my mother proud by finishing all of my dinner. After all, I wasn't allowed to eat or drink anything until after my surgery the next day.
The following morning, I sit around in anticipation while my family is all en route to Cleveland from various parts of Indiana - my sister and brother-in-law traveling the furthest distance from Indianapolis, while my parents had a marginally shorter trip from Bristol. Everyone was descending upon the Cleveland Clinic Guest House, where we would spend a few short moments together before heading over to get me ready for surgery. My parents were the first to arrive, followed shortly by Juli & Ben...and then it was time walk over to the eye center.
It was a beautiful day in Cleveland...especially for January 6th...temperatures nearing the 50 degree mark! We arrive at the Cole Eye Institute, and Graham and I are quickly sent back for pre-admission screening. Basically, they gathered my insurance information, advance directives, and got me entered into the system for the surgery. We met with the seductively foreign Anka, a woman whose role and position within the hospital continues to elude me, and sign the paperwork to participate in the medical study which will determine how likely my cancer is to metastasize. We are told to expect the results in 7-10 days.
Shortly thereafter, I am called back to the surgical area to get hooked up to all of the machines and changed into my hospital gown. Graham joins me for this part and I am later joined by the rest of my family. I met with all of the doctors and nurses who will be working on me, answer a whole series of questions, get my IV inserted and am all set to go! I find out that I will be receiving Propofol - made famous by Michael Jackson. Woo hoo! I get a quick shot and wake up completely confused 45 minutes later. Graham and my Dad are standing by my side in the recovery room, and after a few foolish moments induced by sedation, I come to a quick realization that I am in a fair amount of pain. Percocet to the rescue, and I am transported to my private hospital room where I will spend the next four days.
The room is nice - the nurses are attentive - the food staff is always making me laugh - and I've got my two favorite guys by my side at all times. While the nurses were certainly capable of doing their jobs, I had the best two back-up nurses in Graham and Dad that anyone could ask for. I won't go into great detail about each day in the hospital other than to say that as time wore on, the radiation and pain caused me to lose more and more energy. My days were brightened by visits from a couple of friends, phone calls and text messages from many others and the return of my mom and sister to Cleveland for a visit. Throughout this entire ordeal, I am completely indebted to Graham and Dad - those two had a mission at which they were entirely successful - their purpose seemed to be to make me feel loved and not alone in this journey, and my heart feels so big when I think of the comfort it gave me to know that they were either in my room at all times, or were within reach. I felt safe with these two watching over me.
The second surgery had its share of fun - more Propofol, more silliness from me as I'm coming out from under its spell, more realization of pain, but the best part about the second surgery was that I got to go home afterwards. Feeling the outside air on my skin was a welcome reminder of being alive - something that is easy to forget when your days are spent lying in a hospital bed in a room from which you cannot leave.
So, now the healing begins. I return on the 19th to Cleveland for a follow-up visit with Dr. Singh. We should also learn the results of my genetic study at that time, if not sooner. Until then, scores of bad television shows will be watched....Graham will be thoroughly reminded of my presence....and I will remain positive and optimistic that the best is yet to come.
The hospital visit was not so bad. Graham and I arrived a day early and settled into the hotel that would become his new home for the next four days while I lived in the hospital. We started our adventure by taking a walk around the Cleveland Clinic campus: from the hotel to the Cole Eye Institute and various other points of interest. We ended our last night together with a fancy French dinner at L'Albatros. It was a great meal! I started with the French Onion Soup, we split a chopped salad, three different types of cheeses ranging from soft to hard and light in flavor to funky, steak frites for dinner and then a brownie for dessert. Oh...and a bottle of Malbec and a decaf cappuccino! Gluttony has always been my favorite vice, and I made my mother proud by finishing all of my dinner. After all, I wasn't allowed to eat or drink anything until after my surgery the next day.
The following morning, I sit around in anticipation while my family is all en route to Cleveland from various parts of Indiana - my sister and brother-in-law traveling the furthest distance from Indianapolis, while my parents had a marginally shorter trip from Bristol. Everyone was descending upon the Cleveland Clinic Guest House, where we would spend a few short moments together before heading over to get me ready for surgery. My parents were the first to arrive, followed shortly by Juli & Ben...and then it was time walk over to the eye center.It was a beautiful day in Cleveland...especially for January 6th...temperatures nearing the 50 degree mark! We arrive at the Cole Eye Institute, and Graham and I are quickly sent back for pre-admission screening. Basically, they gathered my insurance information, advance directives, and got me entered into the system for the surgery. We met with the seductively foreign Anka, a woman whose role and position within the hospital continues to elude me, and sign the paperwork to participate in the medical study which will determine how likely my cancer is to metastasize. We are told to expect the results in 7-10 days.
Shortly thereafter, I am called back to the surgical area to get hooked up to all of the machines and changed into my hospital gown. Graham joins me for this part and I am later joined by the rest of my family. I met with all of the doctors and nurses who will be working on me, answer a whole series of questions, get my IV inserted and am all set to go! I find out that I will be receiving Propofol - made famous by Michael Jackson. Woo hoo! I get a quick shot and wake up completely confused 45 minutes later. Graham and my Dad are standing by my side in the recovery room, and after a few foolish moments induced by sedation, I come to a quick realization that I am in a fair amount of pain. Percocet to the rescue, and I am transported to my private hospital room where I will spend the next four days.
The room is nice - the nurses are attentive - the food staff is always making me laugh - and I've got my two favorite guys by my side at all times. While the nurses were certainly capable of doing their jobs, I had the best two back-up nurses in Graham and Dad that anyone could ask for. I won't go into great detail about each day in the hospital other than to say that as time wore on, the radiation and pain caused me to lose more and more energy. My days were brightened by visits from a couple of friends, phone calls and text messages from many others and the return of my mom and sister to Cleveland for a visit. Throughout this entire ordeal, I am completely indebted to Graham and Dad - those two had a mission at which they were entirely successful - their purpose seemed to be to make me feel loved and not alone in this journey, and my heart feels so big when I think of the comfort it gave me to know that they were either in my room at all times, or were within reach. I felt safe with these two watching over me.
The second surgery had its share of fun - more Propofol, more silliness from me as I'm coming out from under its spell, more realization of pain, but the best part about the second surgery was that I got to go home afterwards. Feeling the outside air on my skin was a welcome reminder of being alive - something that is easy to forget when your days are spent lying in a hospital bed in a room from which you cannot leave.
So, now the healing begins. I return on the 19th to Cleveland for a follow-up visit with Dr. Singh. We should also learn the results of my genetic study at that time, if not sooner. Until then, scores of bad television shows will be watched....Graham will be thoroughly reminded of my presence....and I will remain positive and optimistic that the best is yet to come.
Thursday, January 5, 2012
Let's Kill This Thing
Today is the day we leave for Cleveland! It's hard to believe that I am only a day away from treatment, and at the same time it feels like I have been waiting forever for that day to come. It's strange how the past three weeks have all happened so quickly and so slowly at the same time.
As if it knows that its days are numbered, my tumor has been putting on a pretty spectacular lights show in my eye the past few days. All I can say is, "Live it up, bitch...because your days are coming to an end!"
I'm looking forward to seeing my family tomorrow. I am looking forward to being surrounded by those I love. I'm probably going to start getting very sentimental. Everyone in my family - especially Graham - has shown real strength and that helps me tremendously. I fight not only for myself, but for the man who has my heart and soul. This is a battle for both of us and I've got too much of a life ahead of me to live with him. I fight because I want my parents and sister to look at me as an example so if the day should ever come that they receive a cancer diagnosis, they do not back away from it and face it head on. Being gay teaches you a lot in life about putting up a good fight and always being prepared for a battle. So...game on, cancer bitch. I plan on winning this one!
As if it knows that its days are numbered, my tumor has been putting on a pretty spectacular lights show in my eye the past few days. All I can say is, "Live it up, bitch...because your days are coming to an end!"
I'm looking forward to seeing my family tomorrow. I am looking forward to being surrounded by those I love. I'm probably going to start getting very sentimental. Everyone in my family - especially Graham - has shown real strength and that helps me tremendously. I fight not only for myself, but for the man who has my heart and soul. This is a battle for both of us and I've got too much of a life ahead of me to live with him. I fight because I want my parents and sister to look at me as an example so if the day should ever come that they receive a cancer diagnosis, they do not back away from it and face it head on. Being gay teaches you a lot in life about putting up a good fight and always being prepared for a battle. So...game on, cancer bitch. I plan on winning this one!
Tuesday, January 3, 2012
I'm Gonna Marry The Night
"I won't give up on my life. I'm a Warrior Queen - live passionately tonight." I don't suppose it's merely coincidental that Lady GaGa released her song with these lyrics at the same time when I am feeling like I need to find strength. Sure, I'm no Warrior Queen...nor am I Xena, Warrior Princess....but I have to say that this song is doing wonders for me when I am feeling low. So...thanks to pop music and Lady GaGa for empowering me! HA!
I will quickly summarize the events since the trip to Cleveland. I came back to work and had conversations with the management group about my cancer and went on short term disability. Letting go of my work has been very difficult. I hate to start something and then not finish it, or hand it off to someone. But, it is what it is...and right now, I don't have a whole lot of control over much in my life. That's not easy when you're a control freak like me!
Today is a big cancer day for me. I will be talking with the Cancer Resource Group through my health insurance so that they can talk to me about the additional benefits we get for becoming a member. I am going to see my primary care physician today to be examined and cleared for surgery. Then, I am meeting with Carol, a woman here in Buffalo who got the same diagnosis as mine this past October. She had her surgery in November, and we are meeting for coffee to talk about the things we have in common. It really helps to talk to people who are also a 'member of the club.' Cancer really screws up your mind, and I think it is hard for people outside of it to understand everything it does to you mentally and emotionally.
My surgery is Friday and I cannot wait! I have no anxiety over the surgery. My anxiety stems from waiting and doing nothing. I want to get the surgery and know that we are doing something to kill this disease. I feel prepared for the surgery. I know what to expect. What I do not feel prepared for is the recovery period. I don't really enjoy just sitting around. This will be interesting....
I will quickly summarize the events since the trip to Cleveland. I came back to work and had conversations with the management group about my cancer and went on short term disability. Letting go of my work has been very difficult. I hate to start something and then not finish it, or hand it off to someone. But, it is what it is...and right now, I don't have a whole lot of control over much in my life. That's not easy when you're a control freak like me!
Today is a big cancer day for me. I will be talking with the Cancer Resource Group through my health insurance so that they can talk to me about the additional benefits we get for becoming a member. I am going to see my primary care physician today to be examined and cleared for surgery. Then, I am meeting with Carol, a woman here in Buffalo who got the same diagnosis as mine this past October. She had her surgery in November, and we are meeting for coffee to talk about the things we have in common. It really helps to talk to people who are also a 'member of the club.' Cancer really screws up your mind, and I think it is hard for people outside of it to understand everything it does to you mentally and emotionally.
My surgery is Friday and I cannot wait! I have no anxiety over the surgery. My anxiety stems from waiting and doing nothing. I want to get the surgery and know that we are doing something to kill this disease. I feel prepared for the surgery. I know what to expect. What I do not feel prepared for is the recovery period. I don't really enjoy just sitting around. This will be interesting....
Mistake By The Lake
I guess that's probably a pretty shitty way to describe Cleveland, especially when I am visiting from Buffalo...a city with an equally drab image. Cleveland certainly has more to offer - a more developed waterfront, better medical services, world class museums....Buffalo, however, is in my blood. Maybe that's why I have cancer! HA! Bad joke, I guess....but, I like to keep a sense of humor about this whole thing from time to time.
Anyway, I thought I would retell the story of my first trip to Cleveland. After a weekend of telling my parents, sister, and a close friend or two - my spirits are low and so we head off to meet with my oncologist on Tuesday, December 20th - the first night of Hanukkah. It is a full day, so we headed up the evening before and stayed overnight on the campus of the Cleveland Clinic.
The whole experience is surreal on that first night in Cleveland. First off, you're staying on a medical campus and it's pretty freaking obvious. You are surrounded by people who are ill, or who are visiting the ill. The hotels, while clean and comfortable, feel very institutional. There is an overlying emphasis on "wellness." I feel totally out of place. Graham and I have dinner at the hotel restaurant. I wanted the least healthy looking thing on the menu. And I wanted beer. I got both! Staying in the hotel reminded me of the reason why we were there in the first place, and despite any nervousness about the day that was lying ahead of me, I slept like a log. I think my emotions and everything finally caught up with me and left me exhausted. Our room was amazing....it was a suite, in fact. The most luxurious accommodations we've ever had, and it was overshadowed by the reality of why we were even in the room to begin with.
The next morning, we are up at it - stopping off first to hit the elliptical machines in the fitness center. A little cancer is NOT going to get in the way with my gym obsession. We finish up, shower, and head over to the Cole Eye Institute - an easy walk from our hotel.
I have to say, this building is amazing. The central lobby is designed and inspired by the structure of the eyeball. This is where I will have my surgeries. At least it is aesthetically pleasing to me!
We don't wait long and are ushered into an examination room where I get started with some dilation and numbing drops. My poor left eye is feeling totally ignored through this whole process. Everyone is all about the right eye! I meet my oncologist, Dr. Singh, and he and his resident doctor put me through the same battery of examinations that I had just undergone a few days earlier in Buffalo. They'll want to take more pictures, and of course another ultrasound.
He immediately confirms the diagnosis - choroidal melanoma (also known as ocular melanoma, uveal melanoma...or just simply, eye cancer). He, however, is going to give us a measurement of the tumor and will talk to me about the upcoming surgery. He makes me feel totally at ease. Nothing can go wrong if I am in his hands. He is soothing and caring. In a matter of minutes, I have put complete faith and trust into him.
Now that we've got clarity on the situation, we need to submit to a couple of additional test to make sure that the cancer has not already spread. I'll be getting blood work and a CAT scan today as well. I'm very nervous about the results of these two. The internet can be both a blessing and a curse when you are diagnosed with a disease. You read terms like "lethal" and "aggressive" and "mortality" when you are reading about this cancer of mine. It's rather unsettling. I think to myself, "But I feel GREAT! I am a super active person! None of this can really be true....I look and feel healthy." Again, the reality comes back into play when you're chugging a gallon of barium and water so that they can get a good look at your liver. The picture becomes even starker when you're sitting in a waiting room with other cancer patients who are hooked up to their chemo machines. I still don't feel like I belong here.
The last appointment of the day is to meet with the radiation oncologist - the doctor who will determine how much radiation they are going to blast into my tumor. He's another very nice man & he holds a special place in my heart because he is the one who tells me that the CAT scan from earlier in the day came back clear. And, I can keep my eye! The vision will probably suffer a bit, but I'll still have my own eye in my head and that was important to me.
We head out after a full 7 hour day of testing and head back home to Buffalo. We've still got to light the menorah and exchange our first gifts. I got a space heater and a cancer diagnosis for the first night of Hanukkah.
Anyway, I thought I would retell the story of my first trip to Cleveland. After a weekend of telling my parents, sister, and a close friend or two - my spirits are low and so we head off to meet with my oncologist on Tuesday, December 20th - the first night of Hanukkah. It is a full day, so we headed up the evening before and stayed overnight on the campus of the Cleveland Clinic.
The whole experience is surreal on that first night in Cleveland. First off, you're staying on a medical campus and it's pretty freaking obvious. You are surrounded by people who are ill, or who are visiting the ill. The hotels, while clean and comfortable, feel very institutional. There is an overlying emphasis on "wellness." I feel totally out of place. Graham and I have dinner at the hotel restaurant. I wanted the least healthy looking thing on the menu. And I wanted beer. I got both! Staying in the hotel reminded me of the reason why we were there in the first place, and despite any nervousness about the day that was lying ahead of me, I slept like a log. I think my emotions and everything finally caught up with me and left me exhausted. Our room was amazing....it was a suite, in fact. The most luxurious accommodations we've ever had, and it was overshadowed by the reality of why we were even in the room to begin with.
The next morning, we are up at it - stopping off first to hit the elliptical machines in the fitness center. A little cancer is NOT going to get in the way with my gym obsession. We finish up, shower, and head over to the Cole Eye Institute - an easy walk from our hotel.
I have to say, this building is amazing. The central lobby is designed and inspired by the structure of the eyeball. This is where I will have my surgeries. At least it is aesthetically pleasing to me!
We don't wait long and are ushered into an examination room where I get started with some dilation and numbing drops. My poor left eye is feeling totally ignored through this whole process. Everyone is all about the right eye! I meet my oncologist, Dr. Singh, and he and his resident doctor put me through the same battery of examinations that I had just undergone a few days earlier in Buffalo. They'll want to take more pictures, and of course another ultrasound.
He immediately confirms the diagnosis - choroidal melanoma (also known as ocular melanoma, uveal melanoma...or just simply, eye cancer). He, however, is going to give us a measurement of the tumor and will talk to me about the upcoming surgery. He makes me feel totally at ease. Nothing can go wrong if I am in his hands. He is soothing and caring. In a matter of minutes, I have put complete faith and trust into him.
Now that we've got clarity on the situation, we need to submit to a couple of additional test to make sure that the cancer has not already spread. I'll be getting blood work and a CAT scan today as well. I'm very nervous about the results of these two. The internet can be both a blessing and a curse when you are diagnosed with a disease. You read terms like "lethal" and "aggressive" and "mortality" when you are reading about this cancer of mine. It's rather unsettling. I think to myself, "But I feel GREAT! I am a super active person! None of this can really be true....I look and feel healthy." Again, the reality comes back into play when you're chugging a gallon of barium and water so that they can get a good look at your liver. The picture becomes even starker when you're sitting in a waiting room with other cancer patients who are hooked up to their chemo machines. I still don't feel like I belong here.
The last appointment of the day is to meet with the radiation oncologist - the doctor who will determine how much radiation they are going to blast into my tumor. He's another very nice man & he holds a special place in my heart because he is the one who tells me that the CAT scan from earlier in the day came back clear. And, I can keep my eye! The vision will probably suffer a bit, but I'll still have my own eye in my head and that was important to me.
We head out after a full 7 hour day of testing and head back home to Buffalo. We've still got to light the menorah and exchange our first gifts. I got a space heater and a cancer diagnosis for the first night of Hanukkah.
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