Wow it’s been a while since I’ve written anything. I think the last time I wrote I was about to disappear into the abyss that is grad school. And that I did. Well, I have emerged for air, gasping, and choking, but still alive! First quarter done. And, man it was no joke, I had a design assignment right out the gate, which was an amazing process, and I’m really happy with the outcome. I’m going to enjoy this time off, but I’m looking forward to getting back to it in January. Especially since I’m assisting my professor on a show he’s designing at the Denver Center. Hello friends! Here I come! I’m so excited, I can’t wait to see everyone I miss so so much, but I’m also really excited to be returning in a professional capacity. It’s kind of a bucket list thing, well actually, on my bucket list is to design at the Denver Center, but I would be happy with this if it came down to it.
Speaking of the bucket list, which I know makes some people uncomfortable to hear/read me talk about, but it’s a really great thing! Knowing what I want to really achieve or do or see has been such an adventure! There are some basics on the list, but there are small things that change day to day, there’s no pressure, which some might think there would be. I love it.
Though, there are the few that seem impossible, or difficult is a better word, and others that are completely dependant on chance. So I’m not sure how to go about those. The difficult ones involve money, and me not having any, but really those are less important. I would love to travel abroad, but I can always find enjoyment in local travel, and in my truthful opinion, Nor Cal is the best place on Earth! But the other tricky ones, the ones left up to fate, are a little hard to deal with, and considering the record I have with fate, I’m not very optimistic. I want to fall in love again before I die. It feels like a lot to ask for, but it always seemed so easy when I was younger. Maybe because I wasn’t worried about it, maybe because I was less picky, more confident, more trusting, not sick.
Speaking of being sick, I hardly think of it these days, except for the days like today when I’m sitting in the chemo clinic, in a row of chairs filled with people plugged into IV pumps. Those days bum me out, because it brings me back to reality. Even though there is a strange comfort I’ve come to feel being here, which is a little disturbing in it’s own way. I’m due for scans, so I can’t say exactly where I’m at with things, but I feel good.
I do, however, have to find balance in my new crazy life. I’ve gone from a nearly sedentary life style, sleeping in, taking naps, eating as much as I wanted… to all nighters, running on coffee, I even had a bag of cheetos for breakfast one morning… that I found on the floor of my car as I drove to school. So stress release, sleep, and a healthy diet are very important goals for the near future. Exercise, though, has not been a problem. Over the past few months I’ve lost nearly 20 lbs. I walk everywhere, climb stairs, and walk some more, both around Davis, and in my new hometown of Sacramento.
I’m loving living in Sac, though I’m rarely there. My roommate and I became fast friends, and it has been endless adventures. The drive to Davis isn’t too bad, worse on the way home at night, especially since I can see Sacramento in the distance 5 minutes after leaving Davis, but don’t reach it for another 15. But it’s nice being in a city again, though I am longing for parts of my country life, and am beginning to think about looking into bringing Mia to Davis. Even though, I think she is probably quite happy where she is, I miss her! And My Lola, who comes down and spends time with me, and even goes to school!
So I think that just about covers everything! I’ve actually, surprisingly, have been really inspired to create art, which has always been difficult for me, so I look forward to writing more often, and sharing the other pieces I create, as well!
Tchau!
Wednesday, December 8, 2010
Wednesday, August 11, 2010
So guess what??!!! Well, first let me start by saying I didn't want to say anything, because I was scared of jinxing it, but I'm just too excited to contain myself. My vision has majorly improved! I'm still scared crapless that it's going to go back, but I've decided I have to enjoy it while I got it, and stop worrying about if or when it might go away. It would be disappointing, for sure, but I had already accepted that it was probably not going to get better, since it had been several months since the treatment with no improvement... well, I guess when they say radiation keeps working after they've stopped administering it, I didn't realize how long that could be for.
It's crazy how fast it happened, it was almost like one day bad, next day good. Kinda like when it went bad to begin with. Having double vision is extremely fatiguing. You have to focus so hard on everything you look at all day, that by the time night rolled around, and it was time to shut my eyes, they hurt so bad, not to mention the headaches and nausea. When I would wake up in the morning my eyes always felt rested, thus making my vision seem a little better... for a split second. Well, that split second turned into a few seconds, then it felt like minutes, and then I realized I wasn't turning my head to look at people with only my right eye as much. I could walk into a new place, and navigate my way around, because I wasn't seeing two of everything (except for in my way peripheral vision) and the lazy eye I had developed, was back on track, and others started to notice.
So that's what's new, and it's big! I'm no longer fearing school. I'm back to being super excited about it, and getting ready to make a move down to Sacramento very soon. I have a new doctor, and I love her. She took me off the killer chemo, and I feel sooo much better! For the first time in awhile, I feel confident again. I feel like we are back in control, and I can rest easy for awhile. And that's a good feeling.
It's crazy how fast it happened, it was almost like one day bad, next day good. Kinda like when it went bad to begin with. Having double vision is extremely fatiguing. You have to focus so hard on everything you look at all day, that by the time night rolled around, and it was time to shut my eyes, they hurt so bad, not to mention the headaches and nausea. When I would wake up in the morning my eyes always felt rested, thus making my vision seem a little better... for a split second. Well, that split second turned into a few seconds, then it felt like minutes, and then I realized I wasn't turning my head to look at people with only my right eye as much. I could walk into a new place, and navigate my way around, because I wasn't seeing two of everything (except for in my way peripheral vision) and the lazy eye I had developed, was back on track, and others started to notice.
So that's what's new, and it's big! I'm no longer fearing school. I'm back to being super excited about it, and getting ready to make a move down to Sacramento very soon. I have a new doctor, and I love her. She took me off the killer chemo, and I feel sooo much better! For the first time in awhile, I feel confident again. I feel like we are back in control, and I can rest easy for awhile. And that's a good feeling.
Friday, June 11, 2010
June 11, 2008
I haven't made a new entry since May 20th. I'd like to say it's because I've been so busy, doing so many great things, but I can't. It's mostly because I've been sleeping. It's not that I haven't been doing anything fun or exciting, because I have, I have to, I'd go crazy! It's a combination of fatigue, boredom, and depression that has led to all the sleeping, but it gets tricky knowing when I'm feeling what? They all kinda feel they same, and fatigue is to be expected, and then I don't have the energy to do anything and I get bored, but it's the last one I worry about. When does it become depression, when does it all become depression? I decided I didn't want to find out, and asked my doctor for antidepressants.
It's interesting that this is the day I chose to write. It wasn't consciously done, but today is the two year anniversary of the day everything in my life changed. It's not the day of my diagnosis, that would follow, and actually holds less significance than this day. I realize many that are reading this might be coming into the story where my blog picks up, and have no background info. Let me give you a little of what you missed. Starting with what I can remember of the days leading up to June 11th, as if I could forget.
After months of mysterious pains, doctor's visits, misdiagnoses, and essentially being dismissed with a clean bill of health, I took a job up in Steamboat Springs, bout 4 hours from Denver, up in the mountains. I was about 3 days into this job, when I started getting shooting tingling pain down my legs. I saw a local doctor, who put in for authorization for an MRI from my insurance (a request that had been turned done a few months earlier) it was approved, and I had an appointment at the local hospital for an 8am MRI. The morning of my appointment I woke up, and stepped out of bed. My legs were worse. Not because of pain, but because I could barely feel them. Each step I took I had to focus on, look where I was planting my foot, find my balance, then shift my weight. It was like trying to walk with rubber bands connecting my hips to my feet. I made it to the bathroom, and into the the shower... and then down I went. Use of legs gone. I could still move them a little, wiggle my toes, feel them in a numb and tingly sort of way, but they were done supporting my weight. I crawled out of the shower and back to my room. I pulled a pair of jeans on to my near lifeless limbs, then crawled to the door of my production manager's room to get help. We went to the ER of the hospital where I had my appointment, since the situation had been upgraded to emergency. The ER doctor sent me to my MRI, and then I came back to the quite ER to wait. It had snowed the night before. It was June, and had been in the 70's the day before, but it was a complete winter wonderland when I woke up that morning. Everything completely still, and quite. It was the same in the emergency room of this little hospital. Finally the doctor returned, he looked me over with a furrowed brow. "Have you taken a fall lately? Or had any kind of accident?" he asked. I told him no, that I had fallen snow boarding, but that was weeks ago, and I got right up from that. "Well, I got the results of the MRI..." STOP. It was at this moment in his sentence that I panicked, not because I thought he was going to tell me there was something wrong with me, but because I thought he was going to tell me what so many doctors over the past few months had told me, that there was NOTHING wrong with me. I thought, please don't tell me there's nothing wrong with me! I can't feel my legs, how am I supposed to walk out of here if they send me away, I can't walk! "...you have a broken bone in your back." Oh thank god! There's something wrong with me! Medical mystery solved! A broken bone! Yeah, it's in my back, and I still have walking to worry about, but at least now I know what's been wrong with me this whole time! What a relief! "But..." Wait there's a 'but'? "If you didn't have an injury or accident that caused this, it could be a pathological fracture... disease caused." Ok, now panic.
The C-word was never used that day. But I know I thought it. I tried to push it out of my mind, but regardless, there was something living inside me that was eating my spine, I didn't need to hear the word cancer to know this was bad, this was really really bad.
What followed was a Lear jet ride back to Denver for a 9 hour spinal fusion surgery, and the subsequent cancer diagnosis from the biopsies of the damaged spinal tissue taken during the surgery. And then a PET scan to tell me it was breast cancer.
I went to the hospital on June ll, 2008. Little did I know that due the amount of rehabilitation I would need to teach my legs to work again, as well as a slurry of nosocomial infections, I wouldn't be leaving until August 9th. I left the hospital barely able to walk with a walker, and still with a picc line, feeding me IV nutrition, and antibiotics. There were many times in the hospital, and in the months to follow where I had the thought that I wasn't long for this world.
There is a lot that has happened over the last two years, and though my current situation isn't great, I'm still here, I can walk, I can do better than walk, I can dance, ride my horse, I can only slightly jog, but honestly, who really wants to do that anyway?? I feel pretty good.(Recent request for happy pills aside) :)
It's interesting that this is the day I chose to write. It wasn't consciously done, but today is the two year anniversary of the day everything in my life changed. It's not the day of my diagnosis, that would follow, and actually holds less significance than this day. I realize many that are reading this might be coming into the story where my blog picks up, and have no background info. Let me give you a little of what you missed. Starting with what I can remember of the days leading up to June 11th, as if I could forget.
After months of mysterious pains, doctor's visits, misdiagnoses, and essentially being dismissed with a clean bill of health, I took a job up in Steamboat Springs, bout 4 hours from Denver, up in the mountains. I was about 3 days into this job, when I started getting shooting tingling pain down my legs. I saw a local doctor, who put in for authorization for an MRI from my insurance (a request that had been turned done a few months earlier) it was approved, and I had an appointment at the local hospital for an 8am MRI. The morning of my appointment I woke up, and stepped out of bed. My legs were worse. Not because of pain, but because I could barely feel them. Each step I took I had to focus on, look where I was planting my foot, find my balance, then shift my weight. It was like trying to walk with rubber bands connecting my hips to my feet. I made it to the bathroom, and into the the shower... and then down I went. Use of legs gone. I could still move them a little, wiggle my toes, feel them in a numb and tingly sort of way, but they were done supporting my weight. I crawled out of the shower and back to my room. I pulled a pair of jeans on to my near lifeless limbs, then crawled to the door of my production manager's room to get help. We went to the ER of the hospital where I had my appointment, since the situation had been upgraded to emergency. The ER doctor sent me to my MRI, and then I came back to the quite ER to wait. It had snowed the night before. It was June, and had been in the 70's the day before, but it was a complete winter wonderland when I woke up that morning. Everything completely still, and quite. It was the same in the emergency room of this little hospital. Finally the doctor returned, he looked me over with a furrowed brow. "Have you taken a fall lately? Or had any kind of accident?" he asked. I told him no, that I had fallen snow boarding, but that was weeks ago, and I got right up from that. "Well, I got the results of the MRI..." STOP. It was at this moment in his sentence that I panicked, not because I thought he was going to tell me there was something wrong with me, but because I thought he was going to tell me what so many doctors over the past few months had told me, that there was NOTHING wrong with me. I thought, please don't tell me there's nothing wrong with me! I can't feel my legs, how am I supposed to walk out of here if they send me away, I can't walk! "...you have a broken bone in your back." Oh thank god! There's something wrong with me! Medical mystery solved! A broken bone! Yeah, it's in my back, and I still have walking to worry about, but at least now I know what's been wrong with me this whole time! What a relief! "But..." Wait there's a 'but'? "If you didn't have an injury or accident that caused this, it could be a pathological fracture... disease caused." Ok, now panic.
The C-word was never used that day. But I know I thought it. I tried to push it out of my mind, but regardless, there was something living inside me that was eating my spine, I didn't need to hear the word cancer to know this was bad, this was really really bad.
What followed was a Lear jet ride back to Denver for a 9 hour spinal fusion surgery, and the subsequent cancer diagnosis from the biopsies of the damaged spinal tissue taken during the surgery. And then a PET scan to tell me it was breast cancer.
I went to the hospital on June ll, 2008. Little did I know that due the amount of rehabilitation I would need to teach my legs to work again, as well as a slurry of nosocomial infections, I wouldn't be leaving until August 9th. I left the hospital barely able to walk with a walker, and still with a picc line, feeding me IV nutrition, and antibiotics. There were many times in the hospital, and in the months to follow where I had the thought that I wasn't long for this world.
There is a lot that has happened over the last two years, and though my current situation isn't great, I'm still here, I can walk, I can do better than walk, I can dance, ride my horse, I can only slightly jog, but honestly, who really wants to do that anyway?? I feel pretty good.(Recent request for happy pills aside) :)
Thursday, May 20, 2010
Here's an idea: there is a part of the brain, somewhere in the subconscious, that knows exactly what is going on in every cell of our bodies.
Somewhere in my head, the first moment that first cancer cell started to multiply inside of me, my brain knew it. And all the choices I made in my life were then being influenced by this knowledge that my subconscious brain had, but my conscious brain was not aware of.
You could even say that is what intuition is. That "gut" feeling is really just your brain knowing what's going on with you, before you, and making decisions accordingly.
And maybe someday they, the scientists and doctors, will find this part of the brain, and be able to hook-up a diagnostic machine to it, and an itemized list of every function, and malfunction, in our bodies will print out (no, not print, we won't be using paper at that point.) Just like a car.
Does this idea already exist? I'm sure it does. I hope they're working on it.
Somewhere in my head, the first moment that first cancer cell started to multiply inside of me, my brain knew it. And all the choices I made in my life were then being influenced by this knowledge that my subconscious brain had, but my conscious brain was not aware of.
You could even say that is what intuition is. That "gut" feeling is really just your brain knowing what's going on with you, before you, and making decisions accordingly.
And maybe someday they, the scientists and doctors, will find this part of the brain, and be able to hook-up a diagnostic machine to it, and an itemized list of every function, and malfunction, in our bodies will print out (no, not print, we won't be using paper at that point.) Just like a car.
Does this idea already exist? I'm sure it does. I hope they're working on it.
Wednesday, May 19, 2010
Coat Tails
Ok, so things are a little better now. I decided I would sacrifice not feeling nauseous for a bit, in order to find out if any of my medications were the cause of my funk. I had been taking a strong antiemitic as much and as often as was prescribe, to preventatively treat nausea. It worked, wasn't nauseous at all... but I had headaches, no energy, felt spacey. I felt water-logged, and when I would lay on my side it felt like all the water would settle to that side, and then when I moved it was like a tidal wave from one side to the other, or if I stood up, watch out, cuz chances were I was gonna lose my balance. So I decided, to not take the prescribed medicine, and if I started to feel sick, I would take some ginger instead. Low and behold, I started feeling better, and when I start to feel a little queasy, the ginger seems to do the trick! Though, note to self: don't clean up dog puke while trying to combat nausea, yourself.
So aside from my just feeling out-of-it that's been bothering me, is my complete lack of inspiration. I feel all I have to write about is a technical report of my health, I might as well just scan in the "visit summary" reports from my doctor visits, and post those.
Truth is, I think I'm avoiding certain thoughts, and feelings in the hopes that I will get answers to them soon, or they will just go away. My vision has not improved. The implications of this are so overwhelming, I can barely stand to think about it. And I don't even think about the health implications first. What will that mean for going to grad school in the fall? If I can't go to grad school, where will that put me in terms of career, living situation, life? I've tried avoiding this topic, but I can't, it's always there, every time I open my eyes, and see two images where there should be one. And the only thing I can do at this point is wait. And what does that mean, in regards to what's going on in my head? Did the radiation not do anything? Again, I just have to wait.
I've also started having emotions, facing realizations, that I haven't encountered thus far on this journey. When my friends that came to see me over the weekend were leaving, and we were saying our goodbyes, I was completely overcome with the feeling that this could be the last time I would ever see them. Now I don't think I'm gonna die tomorrow, or I should say, I don't think cancer is going to kill me tomorrow, but it really hit me for the first time, that this could, and very likely will kill me at some point.
I am hopeful, and optimistic, and positive, and all those things you are supposed to be, but I have to listen to my doctors, and trust them. They are helping to keep me alive, if it wasn't for them I would already be dead. But part of what they tell me is that I will never be cancer free, the best we can hope for is just to stay a step ahead of it for as long as we can, and that could be for years. That's all they've said. Well, the 2 year mark is coming up in June... so technically speaking, they've already kept me alive for "years". And at the moment, we are NOT a step ahead, we are running after it, grasping at it's coat tails.
So aside from my just feeling out-of-it that's been bothering me, is my complete lack of inspiration. I feel all I have to write about is a technical report of my health, I might as well just scan in the "visit summary" reports from my doctor visits, and post those.
Truth is, I think I'm avoiding certain thoughts, and feelings in the hopes that I will get answers to them soon, or they will just go away. My vision has not improved. The implications of this are so overwhelming, I can barely stand to think about it. And I don't even think about the health implications first. What will that mean for going to grad school in the fall? If I can't go to grad school, where will that put me in terms of career, living situation, life? I've tried avoiding this topic, but I can't, it's always there, every time I open my eyes, and see two images where there should be one. And the only thing I can do at this point is wait. And what does that mean, in regards to what's going on in my head? Did the radiation not do anything? Again, I just have to wait.
I've also started having emotions, facing realizations, that I haven't encountered thus far on this journey. When my friends that came to see me over the weekend were leaving, and we were saying our goodbyes, I was completely overcome with the feeling that this could be the last time I would ever see them. Now I don't think I'm gonna die tomorrow, or I should say, I don't think cancer is going to kill me tomorrow, but it really hit me for the first time, that this could, and very likely will kill me at some point.
I am hopeful, and optimistic, and positive, and all those things you are supposed to be, but I have to listen to my doctors, and trust them. They are helping to keep me alive, if it wasn't for them I would already be dead. But part of what they tell me is that I will never be cancer free, the best we can hope for is just to stay a step ahead of it for as long as we can, and that could be for years. That's all they've said. Well, the 2 year mark is coming up in June... so technically speaking, they've already kept me alive for "years". And at the moment, we are NOT a step ahead, we are running after it, grasping at it's coat tails.
Monday, May 17, 2010
I'm in a funk. Partly due to the the amazing weekend I had visiting with friends that I hadn't seen in a very long time, and now they are gone, and I am sad. But also because I've started to feel some side effects from my treatment. I really shouldn't be complaining that, so far, the worst feeling I've had from this treatment I choose to describe as "funky". I'm mean, it could obviously be a lot worse. I guess I would elaborate by saying, I feel like I'm wearing my body, and it's uncomfortable, and I want to take it off, but I can't.
And I'm not even sure what it is? They gave me the info sheets for the chemo drugs, and they list some common side effects, and this feeling isn't on there. And then I think about the fact that I just finished radiation, and though I hardly had any side effects from that, maybe now that I'm on chemo, it's combining, and that's what I'm feeling? Or maybe it's a side effect of one of the many medications I'm taking to counter act the side effects of the treatments I'm on? Or is it my actual illness? How do I know? I try to listen to my body, but there's so much in there, all talking at once, I don't know who's saying what?
And then, I can't stop eating. I mentioned this before, when I first started the steroids, but I've been tapering off the steroids, and my appetite hasn't really decreased. That makes me wonder if it's some kind of depression that I'm failing to recognize, and I'm filling a void with food? But it's not like I just sit on the couch with a can of spray cheeze and ritz, and mindlessly stuff my face. I have cravings, for really delicious wholesome food, and then I cook, and sit down, and enjoy them. So then I think, maybe it's one of those cancer revelations. Like, food is one of the joys in life that I should be endulging in, and damn it, I'm gonna! But it kinda feels like the munchies, so I don't think it's just that, maybe just the part where I don't want to waste a good meal on something blah. Gourmet munchies. Again, not really something to complain about, but still has me feeling... funky.
And I'm not even sure what it is? They gave me the info sheets for the chemo drugs, and they list some common side effects, and this feeling isn't on there. And then I think about the fact that I just finished radiation, and though I hardly had any side effects from that, maybe now that I'm on chemo, it's combining, and that's what I'm feeling? Or maybe it's a side effect of one of the many medications I'm taking to counter act the side effects of the treatments I'm on? Or is it my actual illness? How do I know? I try to listen to my body, but there's so much in there, all talking at once, I don't know who's saying what?
And then, I can't stop eating. I mentioned this before, when I first started the steroids, but I've been tapering off the steroids, and my appetite hasn't really decreased. That makes me wonder if it's some kind of depression that I'm failing to recognize, and I'm filling a void with food? But it's not like I just sit on the couch with a can of spray cheeze and ritz, and mindlessly stuff my face. I have cravings, for really delicious wholesome food, and then I cook, and sit down, and enjoy them. So then I think, maybe it's one of those cancer revelations. Like, food is one of the joys in life that I should be endulging in, and damn it, I'm gonna! But it kinda feels like the munchies, so I don't think it's just that, maybe just the part where I don't want to waste a good meal on something blah. Gourmet munchies. Again, not really something to complain about, but still has me feeling... funky.
Wednesday, May 12, 2010
New Chemo Day 1
It feels good to have the poison back in me. Weird statement, I know. But I wasn't safe, I could feel it. In the past 7 weeks that I have been off chemotherapy, in order to do radiation to the brain, I could feel it on the move in the rest of my body. Have I really become that aware of my body? Or have I just become paranoid? I'll find out next week, when I get the results of my scan last week, but I could feel it. And now, I feel safer.
Tuesday, May 11, 2010
Robots, Spinal Fluid, and Shoes
I felt it was time for some good news! These are small things, so don't get too excited, but to be cliche for a moment, it's appreciating the little stuff that really counts when it comes to happiness.
First off let me tell you about last Saturday, when my 4 year old nephew came over, and persisted to speak like a robot. It was a really good robot impression, sounded like some one who had a laryngectomy, and was using a voice prosthesis. I asked him how he was doing it? He stared blankly. I chalked it up to him being 4, watching too much TV, and let it go... until later that night when I turned on the TV. Certain voices in certain octave ranges were also robot voices. Ok, now I'm worried. It wasn't my nephew, once again, it's my own damn head! I took and extra dose of my meds, but decided I wasn't going to call the on-call oncologist at midnight. But it was the same the next day, so I called. He didn't give me any explanation, just told me to take an extra dose of meds, and come in on Monday. Oh boy. So I did, as always, preparing myself for the worst as we got closer to the hospital. But was quickly relieved of my worries once the doctor stuck an otoscope in my ears. Sometimes after radiation to the noggin, fluid build up can occur behind the ears as a result of the healing process, and cause hearing to be funny for awhile. The only real concern is that it can get infected, but they said I should be fine, just keep on the look out for signs of infection: pain, fever, chills, that kind of thing. So the robot voices will be around for a bit, but they're friendly robots, so that's ok by me!
The next bit of good news, which actually is really good news, so I have a little trouble fully accepting it. I'm still waiting for the phone call to say they mixed up the test results, but as of right now, they are saying there no detectable cancerous swimmer cells in my spinal fluid. Which means a port does not need to be placed directly in my head! Uh, YAY!
And the last bit, not health related at all, but makes me happy! In my mad cleaning, preparing to be immunosuppressed once again, I found the keys to my vintage Samsonite luggage, filled with vintage Jackie Kennedy style dresses, that I acquired over 10 years ago, locked up, and then lost the keys. I am very excited about this! Now I have an excuse to buy the $80 nude pumps that I desperately want, but had no real good reason to buy ;-)
First off let me tell you about last Saturday, when my 4 year old nephew came over, and persisted to speak like a robot. It was a really good robot impression, sounded like some one who had a laryngectomy, and was using a voice prosthesis. I asked him how he was doing it? He stared blankly. I chalked it up to him being 4, watching too much TV, and let it go... until later that night when I turned on the TV. Certain voices in certain octave ranges were also robot voices. Ok, now I'm worried. It wasn't my nephew, once again, it's my own damn head! I took and extra dose of my meds, but decided I wasn't going to call the on-call oncologist at midnight. But it was the same the next day, so I called. He didn't give me any explanation, just told me to take an extra dose of meds, and come in on Monday. Oh boy. So I did, as always, preparing myself for the worst as we got closer to the hospital. But was quickly relieved of my worries once the doctor stuck an otoscope in my ears. Sometimes after radiation to the noggin, fluid build up can occur behind the ears as a result of the healing process, and cause hearing to be funny for awhile. The only real concern is that it can get infected, but they said I should be fine, just keep on the look out for signs of infection: pain, fever, chills, that kind of thing. So the robot voices will be around for a bit, but they're friendly robots, so that's ok by me!
The next bit of good news, which actually is really good news, so I have a little trouble fully accepting it. I'm still waiting for the phone call to say they mixed up the test results, but as of right now, they are saying there no detectable cancerous swimmer cells in my spinal fluid. Which means a port does not need to be placed directly in my head! Uh, YAY!
And the last bit, not health related at all, but makes me happy! In my mad cleaning, preparing to be immunosuppressed once again, I found the keys to my vintage Samsonite luggage, filled with vintage Jackie Kennedy style dresses, that I acquired over 10 years ago, locked up, and then lost the keys. I am very excited about this! Now I have an excuse to buy the $80 nude pumps that I desperately want, but had no real good reason to buy ;-)
Sunday, May 9, 2010
Battle?
I've often heard people refer to someone who has died from cancer with such statements as, " So-and-so lost their however-many-year battle with cancer..."
"Battle"? Like in a war? I guess I get that. I do feel like I'm in a fight for my life, but battle doesn't seem like the right kind of fight. A battle is planned, strategized, had some motive to even begin. I even associate a sense of honor or pride with battle. And though now, with my team of doctors, there is a degree of planning and strategizing that does liken it more to a battle, there is no pride, no honor.
A battle, for me, conjures images of idealistic young soldiers of a bygone era, neatly dressed in their uniforms, dying for liberty. Or fearless Samurai, in full armour, skilfully and fiercely fighting and dying dutifully, with integrity. It's a little hard for me to compare these romanticized ideas of warfare to a disgustingly devastating biological anomaly like cancer.
If I had to pick a better analogous "fight" to describe cancer I would compare it to domestic violence. Now having never experienced domestic abuse, I don't truly know if my analogy is even accurate or appropriate. But then again, I have never been to battle either, and people throw that word around like confetti.
I was attacked. Not by an enemy with a motive or vendetta. Not by a stranger out on the street, in a bad neighborhood. But at home, by someone I trusted, someone I took care of even, loved, felt safe with, my own body.
There are a few people that may learn how they got cancer. Or there are others who fit the mold of someone predisposed to get cancer. And in those cases they can blame lifestyle, or exposure to carcinogens, or genetics. I fit none of those categories. I've tried. Doctors won't buy it. There is no one, right now, that can explain, or even has a good idea, why a 27 year old, leading a healthy active lifestyle, with no prolonged exposure to dangerous carcinogens, or genetic predisposition wakes up one day to find she has stage IV cancer.
My body attacked me. It's the one place I couldn't escape; my body, my home. That is why I liken it to domestic violence. Because no matter what you do to distance yourself from a dangerous relationship, you're still connected to that person in someway. They were your partner, your confidant, maybe they're even the father of your children, and now you fear them. You try to remove yourself from the dangerous situation, get protection, file a restraining order... find doctors you trust, have surgery, start treatment.
You try to start to rebuild your life, but always knowing he's out there, possibly stalking, planning, you never feel quite safe. You wonder what he might have been doing while you were trying to fix yourself... going in for a scan, or a blood test, waiting for the results to see if cancer has been abiding by it's restraining order, or if it's been one step behind you the whole time.
And maybe, you have a case where he goes to prison/remission, and you feel a little safer knowing he's not roaming the streets. But maybe that's not your case. And he's still out there. And he is planning something. And then one day that mother fucker is waiting for you when you get home, and he beats you to death.
They don't call that losing a battle... that's called fucking murder.
"Battle"? Like in a war? I guess I get that. I do feel like I'm in a fight for my life, but battle doesn't seem like the right kind of fight. A battle is planned, strategized, had some motive to even begin. I even associate a sense of honor or pride with battle. And though now, with my team of doctors, there is a degree of planning and strategizing that does liken it more to a battle, there is no pride, no honor.
A battle, for me, conjures images of idealistic young soldiers of a bygone era, neatly dressed in their uniforms, dying for liberty. Or fearless Samurai, in full armour, skilfully and fiercely fighting and dying dutifully, with integrity. It's a little hard for me to compare these romanticized ideas of warfare to a disgustingly devastating biological anomaly like cancer.
If I had to pick a better analogous "fight" to describe cancer I would compare it to domestic violence. Now having never experienced domestic abuse, I don't truly know if my analogy is even accurate or appropriate. But then again, I have never been to battle either, and people throw that word around like confetti.
I was attacked. Not by an enemy with a motive or vendetta. Not by a stranger out on the street, in a bad neighborhood. But at home, by someone I trusted, someone I took care of even, loved, felt safe with, my own body.
There are a few people that may learn how they got cancer. Or there are others who fit the mold of someone predisposed to get cancer. And in those cases they can blame lifestyle, or exposure to carcinogens, or genetics. I fit none of those categories. I've tried. Doctors won't buy it. There is no one, right now, that can explain, or even has a good idea, why a 27 year old, leading a healthy active lifestyle, with no prolonged exposure to dangerous carcinogens, or genetic predisposition wakes up one day to find she has stage IV cancer.
My body attacked me. It's the one place I couldn't escape; my body, my home. That is why I liken it to domestic violence. Because no matter what you do to distance yourself from a dangerous relationship, you're still connected to that person in someway. They were your partner, your confidant, maybe they're even the father of your children, and now you fear them. You try to remove yourself from the dangerous situation, get protection, file a restraining order... find doctors you trust, have surgery, start treatment.
You try to start to rebuild your life, but always knowing he's out there, possibly stalking, planning, you never feel quite safe. You wonder what he might have been doing while you were trying to fix yourself... going in for a scan, or a blood test, waiting for the results to see if cancer has been abiding by it's restraining order, or if it's been one step behind you the whole time.
And maybe, you have a case where he goes to prison/remission, and you feel a little safer knowing he's not roaming the streets. But maybe that's not your case. And he's still out there. And he is planning something. And then one day that mother fucker is waiting for you when you get home, and he beats you to death.
They don't call that losing a battle... that's called fucking murder.
Wednesday, May 5, 2010
When this whole thing started, meaning, form the moment I was told, "You have cancer." (and actually, those weren't the words, they weren't even speaking directly to me. They were telling my mom, and said, "She has cancer." and I just happened to be laying in the hospital bed next to her, drugged up from a 9 hour spinal fusion surgery, and overheard them. Either way, same impact.) and for quite some time after being diagnosed, any kind of cancer campaigning really rubbed me the wrong way. Pink ribbons made me angry. And I'll admit, even now, pink buckets of KFC for cancer just seems inane. Part of that is my opinions about the fast food industry, but something about the way cancer awareness is presented to the public, is a bit euphemistic, to the point of being cutesy.
But I'm experiencing, both with myself and through meeting cancer survivors, that once people reach a certain comfort level in their own situations, that there's almost a natural progression towards advocacy and awareness, and just wanting to help.
My biggest topic, I want to advocate, and actually bring change to, is early detection. And not just to the public, but to the medical industry, as well. Here's a little background on me: I'm 29 now, I was diagnosed 2 years ago at 27. There is no history of breast cancer on my mother's side, my father's sister died of breast cancer at 50. I was 24 at the time, so breast cancer didn't seem like an immediate concern then, though looking back, I probably already had it. Plus, doctor's tell me that paternal genetics don't really factor in, anyway. Well, ok then.
But I wasn't a complete dullard. I had been doing self exams in the shower from the time I was a teenager. My mom had this model her obgyn gave her of this little squishy plastic breast with some, what I can only assume were, marbles embedded in it. It hung in the shower, and I felt it, and felt my own, and aside from it not even feeling like a real breast, I never felt anything even remotely close to this doughy, plasticine-like, marble filled maquette in my own breasts. Granted, I was just a teenager at this point, but I continued self exams throughout my 20's, and was told a variety of different methods for examining, and what to look for. I was told, "Lumpy, like oatmeal, was ok lumpy." Well, what kind of oatmeal are we talking about here?? I like my oatmeal lumpy. I was told not to dig around in the breast, that abnormalities would be felt with a flat hand. I was told pain is an indicator, but that premenstrual pain and firming was totally normal. And I was told that every woman has one breast that's larger than the other.
Here's what I did find: one breast was bigger than the other, and before my periods, it would get firm and painful, and the nipple seemed kind of anchored to the interior of the breast, where the other did not. I told my obgyn, who did an exam, and told me to lay off the caffeine. This was probably 6 months before I was diagnosed with Stage IV breast cancer. At that point my main concern was all the other pain I was having. Back pain, chest pain, trouble breathing. I went to several other specialists to address all these other pains, no one really came up with anything. Muscle spasm, was one guess, pneumonia, was another. One of the specialists even did a breast exam. He told me it was most likely Costochondritis, an infection of the ribcage, and it would go away. The night before I woke up unable to walk, with no feeling in my legs, and went to the hospital to learn I had a broken back caused by the metastasis, I remember standing in front the mirror looking at my body, and wondering why I was in so much pain. My whole chest seemed misshapen, and there were dark veins running in the direction of my left breast. Once I was diagnosed the oncologist even said that my tumor is not easy to locate. It was large, and flat, and just kind of blended in. Looking back, that firmness I felt around my periods was probably the closest I ever was to detecting it before it metastasized. But I did mention that to my doctor's, and was told it was pretty normal, just stop drinking coffee. So I don't know what else I could have done to catch it any earlier.
I recently reconnected with a friend and told her my story. She is 32, and said that she has similar symptoms with her breasts, pain, firmness, size difference, even chest pain. I don't want to make anyone paranoid, or turn them into a hypochondriac, so I just told her to see her doctor. She did... they told her to stop drinking coffee. Hearing those words again, made me shudder. I understand it would be unlikely, for a friend of mine to have the the exact same condition, but because I have it, there's no way I can sit here and say it's not a very REAL possibility. Because it is REAL for me. And the sad truth is that cancer IS almost that common.
So my dilemma is, what do I do with this? How can my story help? Especially since my story consists of me having next to no symptoms until it was already advanced! I don't know how that's supposed to help anyone? But I do feel the first step is putting my story out there, and seeing what comes from that.
I understand the medical industry is not going to start doing mammograms on every 25 year old, with no maternal family history of cancer, who's breasts hurt occasionally. But maybe if people weren't only specifically looking for perfectly round marbles, or extra lumpy oatmeal, or knew that zombie veins on their chest might mean more than just poor circulation, and if doctors exams were a little less generic, and their patients concerns weren't dismissed due to age.... then maybe, someone, anyone, might not find themselves where I am now. And that would be something.
But I'm experiencing, both with myself and through meeting cancer survivors, that once people reach a certain comfort level in their own situations, that there's almost a natural progression towards advocacy and awareness, and just wanting to help.
My biggest topic, I want to advocate, and actually bring change to, is early detection. And not just to the public, but to the medical industry, as well. Here's a little background on me: I'm 29 now, I was diagnosed 2 years ago at 27. There is no history of breast cancer on my mother's side, my father's sister died of breast cancer at 50. I was 24 at the time, so breast cancer didn't seem like an immediate concern then, though looking back, I probably already had it. Plus, doctor's tell me that paternal genetics don't really factor in, anyway. Well, ok then.
But I wasn't a complete dullard. I had been doing self exams in the shower from the time I was a teenager. My mom had this model her obgyn gave her of this little squishy plastic breast with some, what I can only assume were, marbles embedded in it. It hung in the shower, and I felt it, and felt my own, and aside from it not even feeling like a real breast, I never felt anything even remotely close to this doughy, plasticine-like, marble filled maquette in my own breasts. Granted, I was just a teenager at this point, but I continued self exams throughout my 20's, and was told a variety of different methods for examining, and what to look for. I was told, "Lumpy, like oatmeal, was ok lumpy." Well, what kind of oatmeal are we talking about here?? I like my oatmeal lumpy. I was told not to dig around in the breast, that abnormalities would be felt with a flat hand. I was told pain is an indicator, but that premenstrual pain and firming was totally normal. And I was told that every woman has one breast that's larger than the other.
Here's what I did find: one breast was bigger than the other, and before my periods, it would get firm and painful, and the nipple seemed kind of anchored to the interior of the breast, where the other did not. I told my obgyn, who did an exam, and told me to lay off the caffeine. This was probably 6 months before I was diagnosed with Stage IV breast cancer. At that point my main concern was all the other pain I was having. Back pain, chest pain, trouble breathing. I went to several other specialists to address all these other pains, no one really came up with anything. Muscle spasm, was one guess, pneumonia, was another. One of the specialists even did a breast exam. He told me it was most likely Costochondritis, an infection of the ribcage, and it would go away. The night before I woke up unable to walk, with no feeling in my legs, and went to the hospital to learn I had a broken back caused by the metastasis, I remember standing in front the mirror looking at my body, and wondering why I was in so much pain. My whole chest seemed misshapen, and there were dark veins running in the direction of my left breast. Once I was diagnosed the oncologist even said that my tumor is not easy to locate. It was large, and flat, and just kind of blended in. Looking back, that firmness I felt around my periods was probably the closest I ever was to detecting it before it metastasized. But I did mention that to my doctor's, and was told it was pretty normal, just stop drinking coffee. So I don't know what else I could have done to catch it any earlier.
I recently reconnected with a friend and told her my story. She is 32, and said that she has similar symptoms with her breasts, pain, firmness, size difference, even chest pain. I don't want to make anyone paranoid, or turn them into a hypochondriac, so I just told her to see her doctor. She did... they told her to stop drinking coffee. Hearing those words again, made me shudder. I understand it would be unlikely, for a friend of mine to have the the exact same condition, but because I have it, there's no way I can sit here and say it's not a very REAL possibility. Because it is REAL for me. And the sad truth is that cancer IS almost that common.
So my dilemma is, what do I do with this? How can my story help? Especially since my story consists of me having next to no symptoms until it was already advanced! I don't know how that's supposed to help anyone? But I do feel the first step is putting my story out there, and seeing what comes from that.
I understand the medical industry is not going to start doing mammograms on every 25 year old, with no maternal family history of cancer, who's breasts hurt occasionally. But maybe if people weren't only specifically looking for perfectly round marbles, or extra lumpy oatmeal, or knew that zombie veins on their chest might mean more than just poor circulation, and if doctors exams were a little less generic, and their patients concerns weren't dismissed due to age.... then maybe, someone, anyone, might not find themselves where I am now. And that would be something.
Friday, April 30, 2010
Damn, how many TV/movie references did I use in this?... I need to put down the remote.
I want to give an informational update as to where I'm at with treatment, well, as informative as it can be, coming trough me, from the doctor's, who, when they explain it to me, only about 25% (that's probably being generous) registers as anything more than, " Wahwah...radiation...Wah Wahwah Wah...chemotherapy...Wah...scan...Wahwah Wah Wahwahwah...spinal tap." What the what?
So yesterday I finished a 3 week course of radiation to my WHOLE brain. Radiation continues to work after you've finished treatment, so at this point, nothing is gone, but hopefully shrunk, and continuing to shrink. (The little bit of hope that I spoke of in a previous blog about the bumps on my head shrinking was dashed by the doctors yesterday when they told me "Yeah, that doesn't really mean anything." But I think sensing my letdown added "But it can't be bad, right?" Uh? You're asking me? Don't ask that of me, you won't like my answer).
Radiation in addition to killing cancerous cells, also kills healthy cells. The healthy cells will regenerate, but like with any healing process, it takes time. As of right this moment my vision has not improved, BUT it hasn't gotten worse (very good thing). So we wait 6 weeks for the full effect, then take pictures of my brain, but over the course of the next 6 weeks, the only real thing I have to go off of is if my vision starts to get better.
In my first visit with the Radiation Oncologists, they told me my plan, as well as, some other possible plans for the future depending upon the results of this first plan. As far as radiation goes, they mentioned the possibility of gamma knife radiation, where they target a specific tumor. A treatment used more commonly on people that have one brain tumor, not like me and my baker's dozen, where they just radiate the whole damn head. But it is one tumor in particular, right on my brain stem, that is causing my brain and my eyes to have, "...a failure to communicate."
In the meantime, I will be going back onto some form of chemotherapy, which has yet to be nailed down, due to some tests needed first, which leads me to the spinal tap. Monday I will have that procedure, don't know when I'll get the results, but what they are looking for is cancer cells having a pool party in my spinal fluid. If they are, then we're gonna dump a shark in their pool, no fuck that, we're gonna dump a metric shit ton (actual unit of measure) of piranhas in there! Way feistier. Now the way they administer chemotherapy to the brain and spinal cord is through a "port" placed in the head. I already have a port in my chest for my regular chemo, so the port in the head doesn't really freak me out, but it is a surgical procedure, and even after all I've had, I haven't grown to like them. And if they're not there? Well, they may just do it anyway for good measure.
I have to take a mandatory couple of weeks break between radiation and chemo, which will probably not be too much of a break, since there are tests to taken, results to be discussed, plans to be hatched, but it shouldn't mean being down at the hospital everyday. And to that I say, thank you Jesus! Time for a little trip!
So next on the line up is Spinal Tap, let's turn this shit up to eleven, and ROCK ON!
So yesterday I finished a 3 week course of radiation to my WHOLE brain. Radiation continues to work after you've finished treatment, so at this point, nothing is gone, but hopefully shrunk, and continuing to shrink. (The little bit of hope that I spoke of in a previous blog about the bumps on my head shrinking was dashed by the doctors yesterday when they told me "Yeah, that doesn't really mean anything." But I think sensing my letdown added "But it can't be bad, right?" Uh? You're asking me? Don't ask that of me, you won't like my answer).
Radiation in addition to killing cancerous cells, also kills healthy cells. The healthy cells will regenerate, but like with any healing process, it takes time. As of right this moment my vision has not improved, BUT it hasn't gotten worse (very good thing). So we wait 6 weeks for the full effect, then take pictures of my brain, but over the course of the next 6 weeks, the only real thing I have to go off of is if my vision starts to get better.
In my first visit with the Radiation Oncologists, they told me my plan, as well as, some other possible plans for the future depending upon the results of this first plan. As far as radiation goes, they mentioned the possibility of gamma knife radiation, where they target a specific tumor. A treatment used more commonly on people that have one brain tumor, not like me and my baker's dozen, where they just radiate the whole damn head. But it is one tumor in particular, right on my brain stem, that is causing my brain and my eyes to have, "...a failure to communicate."
In the meantime, I will be going back onto some form of chemotherapy, which has yet to be nailed down, due to some tests needed first, which leads me to the spinal tap. Monday I will have that procedure, don't know when I'll get the results, but what they are looking for is cancer cells having a pool party in my spinal fluid. If they are, then we're gonna dump a shark in their pool, no fuck that, we're gonna dump a metric shit ton (actual unit of measure) of piranhas in there! Way feistier. Now the way they administer chemotherapy to the brain and spinal cord is through a "port" placed in the head. I already have a port in my chest for my regular chemo, so the port in the head doesn't really freak me out, but it is a surgical procedure, and even after all I've had, I haven't grown to like them. And if they're not there? Well, they may just do it anyway for good measure.
I have to take a mandatory couple of weeks break between radiation and chemo, which will probably not be too much of a break, since there are tests to taken, results to be discussed, plans to be hatched, but it shouldn't mean being down at the hospital everyday. And to that I say, thank you Jesus! Time for a little trip!
So next on the line up is Spinal Tap, let's turn this shit up to eleven, and ROCK ON!
Thursday, April 29, 2010
Radiation, done.
Today was the final day of my radiation treatment. Now I wait 6 weeks for an MRI. I felt I should make some sort of record of the occasion, so here it is, but have yet to feel, think, inspire, anything of substance to say about it. I'm kinda numb.
Tuesday, April 27, 2010
So hair went bye bye. And I, once again, heard the doctors utter the phrase, "We've never seen anything like this before!" Of course you haven't, have you met me? No? Well, I'm the girl where everything that happens to me seems to be some kind of first, or rarity, or just plain not supposed to happen by the "norms" of cancer.
Not that losing your hair doesn't happen when you go through certain cancer treatments, but I literally had hair Saturday night, and by Monday morning it was gone... not going, gone.
The radiation docs said the radiation shouldn't have even made it all fall out, and it definitely shouldn't have all fallen out at once. My only other guess is when I went out Saturday night, in order to maintain a reasonable amount of energy to be mildly social, I drank about 5 RedBulls. So I blame the toxic, cow piss, which I think might be radioactive, itself... it gave my hair wings.
But it's not all bad. I made a discovery that has given me some much needed encouragement, as far as the treatment process goes. With radiation there's really no good way of knowing if it's doing anything until well after it's done. So you go through these treatments hoping and praying, but essentially just... waiting.
When I first went through chemo, and lost my hair (the "normal" way) I discovered little lumps, and bumps, and other oddities on my scalp that I always kinda knew were there, but never paid them any attention. I asked my doc about them, and she said they were most likely just benign growths, between the skull and the skin, a lot of people have them, they're not dangerous.
So I got outta the shower yesterday, and toweled off my perfectly smooth, hairless head, and then realized something... it was very nearly perfectly smooth. The bumps that had been there were shadows of their former selves.
Now in all the hoopla that my astonishing hair loss caused, I forgot to mention to the docs my discovery. So I don't know if the radiation has anything to do with it, but it makes me hopeful that if the growths, be them benign, are shrinking on the outside of my head, then just maybe that's an indication that the asshole growths on the inside of my head are shrinking, too.
And that it's not from all the RedBull.
Not that losing your hair doesn't happen when you go through certain cancer treatments, but I literally had hair Saturday night, and by Monday morning it was gone... not going, gone.
The radiation docs said the radiation shouldn't have even made it all fall out, and it definitely shouldn't have all fallen out at once. My only other guess is when I went out Saturday night, in order to maintain a reasonable amount of energy to be mildly social, I drank about 5 RedBulls. So I blame the toxic, cow piss, which I think might be radioactive, itself... it gave my hair wings.
But it's not all bad. I made a discovery that has given me some much needed encouragement, as far as the treatment process goes. With radiation there's really no good way of knowing if it's doing anything until well after it's done. So you go through these treatments hoping and praying, but essentially just... waiting.
When I first went through chemo, and lost my hair (the "normal" way) I discovered little lumps, and bumps, and other oddities on my scalp that I always kinda knew were there, but never paid them any attention. I asked my doc about them, and she said they were most likely just benign growths, between the skull and the skin, a lot of people have them, they're not dangerous.
So I got outta the shower yesterday, and toweled off my perfectly smooth, hairless head, and then realized something... it was very nearly perfectly smooth. The bumps that had been there were shadows of their former selves.
Now in all the hoopla that my astonishing hair loss caused, I forgot to mention to the docs my discovery. So I don't know if the radiation has anything to do with it, but it makes me hopeful that if the growths, be them benign, are shrinking on the outside of my head, then just maybe that's an indication that the asshole growths on the inside of my head are shrinking, too.
And that it's not from all the RedBull.
Monday, April 26, 2010
Wait... am I dying?
Beside this, so far seemingly, therapeutic from of catharsis, "the blog", that I have begun, I also have a much more traditional, and less techie, form of therapy... I see a therapist. Which I highly, and constantly, recommend to anyone with any issues! If I had to choose between my two forms of therapy I would choose to sit with a real person and ball my eyes out any day!
That was not always the case. I had a therapist (not by choice) when I was in high school, when I was a "troubled" teenager. Personally, looking back, I think I was just hormonal and angsty, what 16 year old isn't? And the therapy I had then consisted of me sitting and complaining about living with my parents (ironically enough, a topic that comes up a lot in my current therapy) while she sat across from me with a yellow legal notepad, wrote things down, and said " Mm,hum", and "I see", and the biggest cliche one of all time, that I had to stop and look around for the camera, because I thought I was in a movie, "How does that make you feel?"
Now that's not to say I don't think teenagers can't benefit from a good therapist. Just the opposite. I vividly remember that feeling, when something in my life would go wrong, and I could not see past it. The feeling that the world was coming down around me, with no way to recover, no reason to even try to go on. That feeling of complete and utter hopelessness, that I haven't felt that strongly since...not even now, with cancer. And I don't have to tell you there are a number of teenagers that don't see past it, and tragically, find no reason to go on.
One of the topics I've talked with my current therapist about is, "What happens at the end?" Not the death itself, the just before death... the dying part. Because honestly, that scares me far more than the unknown place I will or won't be going once I'm no longer here.
My grandfather recently passed away. They brought in Hospice for his final weeks. He seemed pretty comfortable, and when it got really close, a syringe full of morphine helped him along his way. Doesn't seem so bad?
But me, the dramatic one, can't help think back to the movies I've seen, picturing myself lying in a bed (and still living in my parents house!) All bald, and sickly looking, with only my mom, and close family there, crying. And I think to myself... that would suck.
One of my fears is having my friends see me like that. My even greater fear is not having any friends come see me at all.
Well recently, actually since I started this blog, I've had a number of friends, some I haven't seen in years, come to see me, others with flights booked, and plans to see more in the works. It's fantastic, I can't hardly stand it! I'm so excited.
But then I stopped and thought... Do they think I'm dying?? Maybe my blog is making this out to seem more serious than it is?? That is when my therapist had to gently remind me, "Kourtney, this is serious."
"Wait... am I dying?"
That question wasn't given an answer, I hope the reason is because there isn't one. But I was reminded of my fears, and it was brought to my attention that right now, at this moment, regardless of the warfare going on inside my body, outwardly I'm happy, vibrant, energetic, vivacious. And isn't this the way I want to see my friends? Hell yeah!
That was not always the case. I had a therapist (not by choice) when I was in high school, when I was a "troubled" teenager. Personally, looking back, I think I was just hormonal and angsty, what 16 year old isn't? And the therapy I had then consisted of me sitting and complaining about living with my parents (ironically enough, a topic that comes up a lot in my current therapy) while she sat across from me with a yellow legal notepad, wrote things down, and said " Mm,hum", and "I see", and the biggest cliche one of all time, that I had to stop and look around for the camera, because I thought I was in a movie, "How does that make you feel?"
Now that's not to say I don't think teenagers can't benefit from a good therapist. Just the opposite. I vividly remember that feeling, when something in my life would go wrong, and I could not see past it. The feeling that the world was coming down around me, with no way to recover, no reason to even try to go on. That feeling of complete and utter hopelessness, that I haven't felt that strongly since...not even now, with cancer. And I don't have to tell you there are a number of teenagers that don't see past it, and tragically, find no reason to go on.
One of the topics I've talked with my current therapist about is, "What happens at the end?" Not the death itself, the just before death... the dying part. Because honestly, that scares me far more than the unknown place I will or won't be going once I'm no longer here.
My grandfather recently passed away. They brought in Hospice for his final weeks. He seemed pretty comfortable, and when it got really close, a syringe full of morphine helped him along his way. Doesn't seem so bad?
But me, the dramatic one, can't help think back to the movies I've seen, picturing myself lying in a bed (and still living in my parents house!) All bald, and sickly looking, with only my mom, and close family there, crying. And I think to myself... that would suck.
One of my fears is having my friends see me like that. My even greater fear is not having any friends come see me at all.
Well recently, actually since I started this blog, I've had a number of friends, some I haven't seen in years, come to see me, others with flights booked, and plans to see more in the works. It's fantastic, I can't hardly stand it! I'm so excited.
But then I stopped and thought... Do they think I'm dying?? Maybe my blog is making this out to seem more serious than it is?? That is when my therapist had to gently remind me, "Kourtney, this is serious."
"Wait... am I dying?"
That question wasn't given an answer, I hope the reason is because there isn't one. But I was reminded of my fears, and it was brought to my attention that right now, at this moment, regardless of the warfare going on inside my body, outwardly I'm happy, vibrant, energetic, vivacious. And isn't this the way I want to see my friends? Hell yeah!
Sunday, April 25, 2010
A Letter to My Sister
Hey Morgan,
Well so far there's nothing wrong with my appendix, so don't go making deals with the devil just yet, especially not over an organ that seems to have no real purpose anyway!
So I'm confused? You speak of your disgust with the system, all the while eating a brownie, which you say you don't deserve, but that you didn't break any laws?
I'm not asking you to defend yourself to me, but in reading your letter to the boy ( I hope you don't mind, and I will save it for him) you used the metaphor of: there are those, such as yourself, that keep their colors of life's playdough colorful, and those, the majority, who mix it up till it's just grey (sorry to inform you, the boy got playdough for easter, and likes nothing more than to mix them all together).
I myself take offense to that. Not just as an artist, but as a strong willed individual, with a degree of disdain for "The Man" myself. However, I have never found myself in your situation, nor do I feel like I am just a sheep in a flock of nameless drones. What I have felt is frustration, anger, and sadness at times, because it doesn't always seem fair, but when millions of people live in a society there is an unavoidable amount of conformity that is required to keep the "peace". And it is up to us as individuals to find constructive ways to conform with integrity. That could be with art, or music, nature, or trying to make a change in this world with advocacy and activism...which are far more powerful approaches than flat out rebellion out of spite.
And I know you have the talent and the passion to do whatever it is you set out to do, but I'm led to believe, due to your current circumstance, that this has nothing to do with not wanting to mix your playdough.
I'm not going to go into what I think about the situation you've landed yourself in. But I do want to say there are circumstances surrounding it that have me angry with you. I don't have to tell you that I'm not close to dad, but the fact that you took him on as his caregiver, and he had to be lawfully removed by APS, and placed in a facility in Stockton, where no one he knows can visit him, greatly upsets me. Again, I know both you and dad feel that APS is just another watchdog of the man, hell-bent on interfering in peoples' lives. Well, your right. But it is exactly for this reason. The situation you put dad in was unacceptable, and something needed to be done, before you ended up in jail, not for whatever it is you're in there for now, but for abuse, neglect, or even involuntary manslaughter.
I don't believe in Karma anymore, and this may sound fucked-up, but I do believe that, in a way, dad has brought this upon himself, partly by allowing you, when you were younger, to be the rebellious individual that you are, and not disciplining you, as a parent should.
And while we are on the topic of parental resentment, I know you resent mom, and that is how you feel, probably more so than I resent dad. But if you cannot see the potential for the boy being "brainwashed" by his father, much like I believe you were "brainwashed" by yours, to resent his mother, and therefore leading him to not want to have anything to do with you, just like you don't want to have anything to do with your mother...well, I'll have to contradict my previous statement about Karma, and say, "What goes around, comes around."
My only, unsolicited suggestion, is to suck it up, get your shit together, so that your son at least has the option of making his own mind up about wanting to see you in the future, rather than confirming everything his father tells him by being in jail, or homeless, or dead in a fucking gutter.
Ok, I'm done lecturing. If this made you angry, or feel that I am against you, it was not my intention, just the opposite. I think about you everyday. I miss the sound of your laugh, and your smile, and the most natural, spiritual connection I've ever felt with another human being. And it's just not because we are sisters. It is far more transcendental than that, we are soul mates.
I love you.
Kourtney
Well so far there's nothing wrong with my appendix, so don't go making deals with the devil just yet, especially not over an organ that seems to have no real purpose anyway!
So I'm confused? You speak of your disgust with the system, all the while eating a brownie, which you say you don't deserve, but that you didn't break any laws?
I'm not asking you to defend yourself to me, but in reading your letter to the boy ( I hope you don't mind, and I will save it for him) you used the metaphor of: there are those, such as yourself, that keep their colors of life's playdough colorful, and those, the majority, who mix it up till it's just grey (sorry to inform you, the boy got playdough for easter, and likes nothing more than to mix them all together).
I myself take offense to that. Not just as an artist, but as a strong willed individual, with a degree of disdain for "The Man" myself. However, I have never found myself in your situation, nor do I feel like I am just a sheep in a flock of nameless drones. What I have felt is frustration, anger, and sadness at times, because it doesn't always seem fair, but when millions of people live in a society there is an unavoidable amount of conformity that is required to keep the "peace". And it is up to us as individuals to find constructive ways to conform with integrity. That could be with art, or music, nature, or trying to make a change in this world with advocacy and activism...which are far more powerful approaches than flat out rebellion out of spite.
And I know you have the talent and the passion to do whatever it is you set out to do, but I'm led to believe, due to your current circumstance, that this has nothing to do with not wanting to mix your playdough.
I'm not going to go into what I think about the situation you've landed yourself in. But I do want to say there are circumstances surrounding it that have me angry with you. I don't have to tell you that I'm not close to dad, but the fact that you took him on as his caregiver, and he had to be lawfully removed by APS, and placed in a facility in Stockton, where no one he knows can visit him, greatly upsets me. Again, I know both you and dad feel that APS is just another watchdog of the man, hell-bent on interfering in peoples' lives. Well, your right. But it is exactly for this reason. The situation you put dad in was unacceptable, and something needed to be done, before you ended up in jail, not for whatever it is you're in there for now, but for abuse, neglect, or even involuntary manslaughter.
I don't believe in Karma anymore, and this may sound fucked-up, but I do believe that, in a way, dad has brought this upon himself, partly by allowing you, when you were younger, to be the rebellious individual that you are, and not disciplining you, as a parent should.
And while we are on the topic of parental resentment, I know you resent mom, and that is how you feel, probably more so than I resent dad. But if you cannot see the potential for the boy being "brainwashed" by his father, much like I believe you were "brainwashed" by yours, to resent his mother, and therefore leading him to not want to have anything to do with you, just like you don't want to have anything to do with your mother...well, I'll have to contradict my previous statement about Karma, and say, "What goes around, comes around."
My only, unsolicited suggestion, is to suck it up, get your shit together, so that your son at least has the option of making his own mind up about wanting to see you in the future, rather than confirming everything his father tells him by being in jail, or homeless, or dead in a fucking gutter.
Ok, I'm done lecturing. If this made you angry, or feel that I am against you, it was not my intention, just the opposite. I think about you everyday. I miss the sound of your laugh, and your smile, and the most natural, spiritual connection I've ever felt with another human being. And it's just not because we are sisters. It is far more transcendental than that, we are soul mates.
I love you.
Kourtney
Friday, April 23, 2010
Thursday, April 22, 2010
Just a quick little happy note...
About a week ago when my oncologist called to schedule her appointment with me, she also told me that she had informed my orthopedic surgeon of my MRI results, and that he wanted to see me, as well. I asked her if there were any concerns, and she used some terms such as "hardware", "pressure", "movement", in a rather vague, noncommittal kinda way, which of course, had me freaking the fuck out!
Side note: I have 2 titanium rods running the length of 12 vertebrae, 18 screws, and a titanium cage holding the place where the T 3,4, and 5 vertebrae used to be, before cancer ATE THEM! I had the the first spinal fusion surgery June 11, 2008. The hardware failed 8 months later, and I had the second, spinal fusion replacement surgery on February 12, 2009. It is now April 22, 2010, over a year from that second surgery.
So back to freaking the fuck out. When I hear certain keywords, such as the ones listed above, spoken in reference to my back, I..I..I get a little nervous.
Not to worry! The Doc just wanted to check up on me since it had been soooo long since he'd needed to see me, and everything looked A OK! He gave me a big hug, told me he liked my tattoo, and loved my eye patch ;-) I told him I hope he was paid well for my surgery.
I love my orthopedic surgeon!
Side note: I have 2 titanium rods running the length of 12 vertebrae, 18 screws, and a titanium cage holding the place where the T 3,4, and 5 vertebrae used to be, before cancer ATE THEM! I had the the first spinal fusion surgery June 11, 2008. The hardware failed 8 months later, and I had the second, spinal fusion replacement surgery on February 12, 2009. It is now April 22, 2010, over a year from that second surgery.
So back to freaking the fuck out. When I hear certain keywords, such as the ones listed above, spoken in reference to my back, I..I..I get a little nervous.
Not to worry! The Doc just wanted to check up on me since it had been soooo long since he'd needed to see me, and everything looked A OK! He gave me a big hug, told me he liked my tattoo, and loved my eye patch ;-) I told him I hope he was paid well for my surgery.
I love my orthopedic surgeon!
Wednesday, April 21, 2010
I'm not religious. At least not in the theatrical sense. Meaning I don't believe in the show. The stage, the audience, the costumes, the script, or even the principle players...living, dead, resurrected or ethereal.
I am however open to the belief that I, as a mere human, one of billions on this planet, along with a seemingly infinite number of other living things, have no idea what there is beyond the world I live in, both in life and after death. In fact, if I were to best describe what I thought there could be, I would use what some might call a cop-out, and say I don't think we are meant to understand.
Yet, humans have continued to discuss, debate, argue, alienate, oppress, and kill over such topics. Because if there's one thing I've learned, it's that we don't like not knowing how things work, and once we think we have it figured out, we don't like others not knowing how we think things work, too.
I've heard the argument that we have been given the gift of reason for just this purpose, to question our existence. I personally, lean more towards the idea that our brains have just evolved into being able to reason, and they are still quite flawed at that, hence all the debate.
With all that said, I'm still here right now, having this debate with myself right now. Maybe it's just my meds, or maybe one of my 12 tumors is pressing on the part of my brain that makes me think about these things, or maybe this is just what people do when they become very aware of their mortality... or maybe I'm not supposed to understand.
One thing I'd like to say is that I believe in prayer. Maybe not in the sense of the word that many people associate with it. I believe that we are all part of a great human network. Let me restate that, a living network, everything on this planet. And that somehow, someway, our energies are connected. And whenever we send a message out into that network, it has the power of connecting with someone or something. And that message can be sent by any means: prayers, thoughts, vibes, love. Who you choose to address that message to is all a matter of choice.
I have received a great deal of messages that I'm being prayed for, that I'm being thought about, that good vibes are being sent my way, that I am loved. I'm not just talking about the ones sent via comment or email, though I do appreciate those. I'm talking about all of them. The ones I receive every minute of the day, from someone, or something, somewhere, via this great living network. Thank you.
I am however open to the belief that I, as a mere human, one of billions on this planet, along with a seemingly infinite number of other living things, have no idea what there is beyond the world I live in, both in life and after death. In fact, if I were to best describe what I thought there could be, I would use what some might call a cop-out, and say I don't think we are meant to understand.
Yet, humans have continued to discuss, debate, argue, alienate, oppress, and kill over such topics. Because if there's one thing I've learned, it's that we don't like not knowing how things work, and once we think we have it figured out, we don't like others not knowing how we think things work, too.
I've heard the argument that we have been given the gift of reason for just this purpose, to question our existence. I personally, lean more towards the idea that our brains have just evolved into being able to reason, and they are still quite flawed at that, hence all the debate.
With all that said, I'm still here right now, having this debate with myself right now. Maybe it's just my meds, or maybe one of my 12 tumors is pressing on the part of my brain that makes me think about these things, or maybe this is just what people do when they become very aware of their mortality... or maybe I'm not supposed to understand.
One thing I'd like to say is that I believe in prayer. Maybe not in the sense of the word that many people associate with it. I believe that we are all part of a great human network. Let me restate that, a living network, everything on this planet. And that somehow, someway, our energies are connected. And whenever we send a message out into that network, it has the power of connecting with someone or something. And that message can be sent by any means: prayers, thoughts, vibes, love. Who you choose to address that message to is all a matter of choice.
I have received a great deal of messages that I'm being prayed for, that I'm being thought about, that good vibes are being sent my way, that I am loved. I'm not just talking about the ones sent via comment or email, though I do appreciate those. I'm talking about all of them. The ones I receive every minute of the day, from someone, or something, somewhere, via this great living network. Thank you.
Sunday, April 18, 2010
Banana Bread
I just baked banana bread. And I'm wearing yellow. Don't know if there is any correlation, but they both make me happy.
The folks are out of town for a week, the broder went out for the night, I'm home alone, and it's the night before the start of week 2 of treatment.
This would be a good night for reflection. The last 2 weeks have been a whirlwind, I feel like I have yet to wrap my head around it. But maybe I just need to decompress.
Aside from finding out about my brain invaders, starting a totally new intensive treatment, trying to not think about grad school, which up until a few weeks ago was ALL I thought about, adjusting to my vision limitations, I have also moved my horse, given away my turtles, and am currently making arrangements for my chinchilla.
Those who know me would not be surprised to know that I have a bit of a zoo. Leo, Mica, Rico, Mia, and Lola. The turtles I had for 5 years, I raised them from silver dollar sized hatchlings. They weren't affectionate, or even very good company, but I liked them.
When I was first diagnosed with cancer I was desperate for a fuzzy companion. It went against many of my principles of pet owning, buying from Petco, keeping a caged critter, one that is primarily bred for pelts, and may have even come from a ranch that raises them for both. I didn't think about any of that, I wanted a little friend to love me unconditionally. And that was Rico.
And then I found out that you aren't even supposed to be around pets, especially the rodent variety, during chemotherapy, due to lowered white blood cell counts, and possibilities for infection. I took my chances with my first round of chemo, and came out ok, but I met with my doc the other day to discuss my future treatments, and I may not fair so well next time. I was told she will most likely be putting me on the oldest form of chemo there is, which is also the harshest. She said, " You will be like the classic idea of a cancer patient on this treatment." I appreciate her honesty. So Rico will need to go.
That will also mean being unable to spend much time with my horse, for the same reason. The horse, Mia, has been a sore subject at some times. No one wanted me to get the horse. My orthopedic surgeon could have killed me dead when I told him, a few months after my back surgery, that I bought a horse... and had every intention of riding her. She was also used as a scapegoat in ending a relationship/friendship, though I know she's not the real reason, because truthfully, I would have sent Mia to the glue factory if it meant that relationship could have worked.
I wanted a horse of my own before I died. My life plan was always to live the life of a theatre artist, and when I retired own a horse and a garden, and it wasn't looking like I was going to make it to retirement. So now I have Mia... and a garden.
She's gone to live with a friend for now while the pastures are filled with Spring grass, and she can be with other horses. I rode her yesterday. It was nice.
You might think I learned my lesson with the chin, and the horse, but nope. Next came Lola. My parents had expressed an interest in getting a dog, and I jumped on this. There are no regrets. Lola is the closest thing I will ever come to having a child, and she is my pride and joy. There is no loyalty like that of a dog. She makes me smile countless times a day.
Time for reflection. All this change has me a little sad, and though I know the animals which have left or are leaving will be going to loving homes, I can't help but feel that I have let them down in some way. It will pass, and it is all for the best. I know this because I did not actively seek out any of these arrangements. Through a number of animal loving friends, which I cannot thank enough, this all just happened. And despite all that has happened lately that could have jaded me, and made me believe that all is senseless and even cruel, I still do believe that things have a natural way of working themselves out, when it is right.
The folks are out of town for a week, the broder went out for the night, I'm home alone, and it's the night before the start of week 2 of treatment.
This would be a good night for reflection. The last 2 weeks have been a whirlwind, I feel like I have yet to wrap my head around it. But maybe I just need to decompress.
Aside from finding out about my brain invaders, starting a totally new intensive treatment, trying to not think about grad school, which up until a few weeks ago was ALL I thought about, adjusting to my vision limitations, I have also moved my horse, given away my turtles, and am currently making arrangements for my chinchilla.
Those who know me would not be surprised to know that I have a bit of a zoo. Leo, Mica, Rico, Mia, and Lola. The turtles I had for 5 years, I raised them from silver dollar sized hatchlings. They weren't affectionate, or even very good company, but I liked them.
When I was first diagnosed with cancer I was desperate for a fuzzy companion. It went against many of my principles of pet owning, buying from Petco, keeping a caged critter, one that is primarily bred for pelts, and may have even come from a ranch that raises them for both. I didn't think about any of that, I wanted a little friend to love me unconditionally. And that was Rico.
And then I found out that you aren't even supposed to be around pets, especially the rodent variety, during chemotherapy, due to lowered white blood cell counts, and possibilities for infection. I took my chances with my first round of chemo, and came out ok, but I met with my doc the other day to discuss my future treatments, and I may not fair so well next time. I was told she will most likely be putting me on the oldest form of chemo there is, which is also the harshest. She said, " You will be like the classic idea of a cancer patient on this treatment." I appreciate her honesty. So Rico will need to go.
That will also mean being unable to spend much time with my horse, for the same reason. The horse, Mia, has been a sore subject at some times. No one wanted me to get the horse. My orthopedic surgeon could have killed me dead when I told him, a few months after my back surgery, that I bought a horse... and had every intention of riding her. She was also used as a scapegoat in ending a relationship/friendship, though I know she's not the real reason, because truthfully, I would have sent Mia to the glue factory if it meant that relationship could have worked.
I wanted a horse of my own before I died. My life plan was always to live the life of a theatre artist, and when I retired own a horse and a garden, and it wasn't looking like I was going to make it to retirement. So now I have Mia... and a garden.
She's gone to live with a friend for now while the pastures are filled with Spring grass, and she can be with other horses. I rode her yesterday. It was nice.
You might think I learned my lesson with the chin, and the horse, but nope. Next came Lola. My parents had expressed an interest in getting a dog, and I jumped on this. There are no regrets. Lola is the closest thing I will ever come to having a child, and she is my pride and joy. There is no loyalty like that of a dog. She makes me smile countless times a day.
Time for reflection. All this change has me a little sad, and though I know the animals which have left or are leaving will be going to loving homes, I can't help but feel that I have let them down in some way. It will pass, and it is all for the best. I know this because I did not actively seek out any of these arrangements. Through a number of animal loving friends, which I cannot thank enough, this all just happened. And despite all that has happened lately that could have jaded me, and made me believe that all is senseless and even cruel, I still do believe that things have a natural way of working themselves out, when it is right.
Tuesday, April 13, 2010
Radiation is kicking my ass, and I've had only had three sessions so far. To be completely honest the side effects could be far worse. I am so lethargic, I can barely drag my ass outta bed to the car, sleep the whole way to my appointment, zone out on the way home, and fall asleep on the couch for the rest of the afternoon.
You may be wondering how it is that I'm up right now then? Well, the steroids they have me taking to combat the side effects (namely nausea, vomiting, headaches, what have you) have some side effects of their own. One being that I'm always hungry, and not just hungry for your average bear, hungry for your average bear that's also a defensive lineman.
So the only reason I'm out of bed is so that I can eat, and the only reason I'm not eating laying down in bed, is because I don't want to choke on my food and die ironically.
Though, that would be a big "Fuck You!" to cancer, wouldn't it? Like, hey cancer, this sandwich was able to kill me before you could, you pussy.
You may be wondering how it is that I'm up right now then? Well, the steroids they have me taking to combat the side effects (namely nausea, vomiting, headaches, what have you) have some side effects of their own. One being that I'm always hungry, and not just hungry for your average bear, hungry for your average bear that's also a defensive lineman.
So the only reason I'm out of bed is so that I can eat, and the only reason I'm not eating laying down in bed, is because I don't want to choke on my food and die ironically.
Though, that would be a big "Fuck You!" to cancer, wouldn't it? Like, hey cancer, this sandwich was able to kill me before you could, you pussy.
Monday, April 12, 2010
Optimism. It's a term, that, to many people, represents a whole state of being, and can be so simply determined by the age old standard of, " is the glass half full, or half empty?"
And once having answered this question you are deemed forever to be one way or the other, optimistic or pessimistic.
I have been told that I am optimistic. I have myself seen it as a virtue, and strove to be so. Looking down on pessimism even. But I think that the two poles of this particular scale have been so stretched apart, that it has become hard to see the grey area that exists in every spectrum. And the value that has been assigned to being optimistic has gone beyond a a simple state of mind, to be expected to be able to be some sort of transcendental power. The glass is half full, but just because you believe that, does not necessarily mean the glass is going to magically fill itself to the top.
And I think that is where some lose sight of that grey area. So wanting to believe that if they think positively they can actually change what's in the glass. I think that's a little something known as miracles, and I do believe they happen, but I'm sure I don't have to tell you that they are few and far between, and don't always happen to the people that you may think deserve them.
So what's the grey area? I guess I would best describe it to be realism. It feels almost defeating even as I write it. Like if you're realistic, that automatically makes you not optimistic, and there for you are thrust to the "bad" side of the spectrum. That half empty glass of water that you're going to drown in.
And I think something else has been lost sight of here, is that there is, and only ever was one glass of water. And if your opinion about it changes day to day, or even minute to minute, that's okay. Because the amount of water will never change.
...Well, not without a miracle ;)
And once having answered this question you are deemed forever to be one way or the other, optimistic or pessimistic.
I have been told that I am optimistic. I have myself seen it as a virtue, and strove to be so. Looking down on pessimism even. But I think that the two poles of this particular scale have been so stretched apart, that it has become hard to see the grey area that exists in every spectrum. And the value that has been assigned to being optimistic has gone beyond a a simple state of mind, to be expected to be able to be some sort of transcendental power. The glass is half full, but just because you believe that, does not necessarily mean the glass is going to magically fill itself to the top.
And I think that is where some lose sight of that grey area. So wanting to believe that if they think positively they can actually change what's in the glass. I think that's a little something known as miracles, and I do believe they happen, but I'm sure I don't have to tell you that they are few and far between, and don't always happen to the people that you may think deserve them.
So what's the grey area? I guess I would best describe it to be realism. It feels almost defeating even as I write it. Like if you're realistic, that automatically makes you not optimistic, and there for you are thrust to the "bad" side of the spectrum. That half empty glass of water that you're going to drown in.
And I think something else has been lost sight of here, is that there is, and only ever was one glass of water. And if your opinion about it changes day to day, or even minute to minute, that's okay. Because the amount of water will never change.
...Well, not without a miracle ;)
Friday, April 9, 2010
Radiation Day 1
I was filling out my appointment book yesterday, and was abbriviating radiation with "RAD". It reminded me of an elementary school lunch room poster like "Carrots are COOL!".... "Radiation is RAD!"
And actually, after having my first treatment today, it was not scary at all, a little disappointing even. How, you might wonder? Well, when I first went in for the simulation (where they just map out the places they're going to zap) it was in this really high-tech room, all white walls and frosted glass, with cool blue ambient lighting, and projected images of a beach in South America on the walls and ceiling, and all technicians were Asians in lab coats (racist I know, but it brings me comfort).
Today I'm shown into your typical beige room, hospital wallpaper, and a mural painted on the ceiling, which I'm sure some people find lovely, but me being a snobby artist, found it highly offensive to my sense of aesthetics.
So the machine rolled around my head flashing pretty blue light at me, five minutes, and it was done. I asked the technician after, if people ever say they can smell the radiation. His reply was, "Yeah, they say it smells metallic, and some people even say they see flashes of blue light."
Oh, so what you're saying is that light wasn't real... RAD!
And actually, after having my first treatment today, it was not scary at all, a little disappointing even. How, you might wonder? Well, when I first went in for the simulation (where they just map out the places they're going to zap) it was in this really high-tech room, all white walls and frosted glass, with cool blue ambient lighting, and projected images of a beach in South America on the walls and ceiling, and all technicians were Asians in lab coats (racist I know, but it brings me comfort).
Today I'm shown into your typical beige room, hospital wallpaper, and a mural painted on the ceiling, which I'm sure some people find lovely, but me being a snobby artist, found it highly offensive to my sense of aesthetics.
So the machine rolled around my head flashing pretty blue light at me, five minutes, and it was done. I asked the technician after, if people ever say they can smell the radiation. His reply was, "Yeah, they say it smells metallic, and some people even say they see flashes of blue light."
Oh, so what you're saying is that light wasn't real... RAD!
Thursday, April 8, 2010
Friday will be the first day of 3 weeks straight of my dome being nuked. Yeah, it's scary, but it has me somewhat hopeful. It's hard to get too hopeful, though. I feel like that's what's gotten me into this mess. Like I got too cocky, I recovered so easily from back surgery, amazed all my doctors, was out riding my horse, and lifting buckets of paint like nothing had every happened. I let my guard down, and got caught.
And not just with one lesion, actually I don't know how many in total, because the doc stopped counting after 12. And here I go being cocky again, but they seemed a little amazed that with the number of tumors I have in my head, that I'm not a drooling, deaf, blind, vegetable in a wheelchair.
I know that's a possibility, though. I don't want to face it, because I don't want it to seem like I'm giving up, but it's probably time for me to write a medical directive. Because, you really just never know.
Back to being hopeful! The whole thing that tipped me off that something wasn't right in my head (besides the usual) was a change in my vision. I am a visual artist, not only my career, but a huge part of my identity relies on my ability to see and create art. That has been seriously threatend, and because so far with all that has happened to me, I assumed that the damage that has been done could merely be halted at best, but not reversed. The doctors told me there is a possibility of my vision getting better. And a possibility is all I need.
And not just with one lesion, actually I don't know how many in total, because the doc stopped counting after 12. And here I go being cocky again, but they seemed a little amazed that with the number of tumors I have in my head, that I'm not a drooling, deaf, blind, vegetable in a wheelchair.
I know that's a possibility, though. I don't want to face it, because I don't want it to seem like I'm giving up, but it's probably time for me to write a medical directive. Because, you really just never know.
Back to being hopeful! The whole thing that tipped me off that something wasn't right in my head (besides the usual) was a change in my vision. I am a visual artist, not only my career, but a huge part of my identity relies on my ability to see and create art. That has been seriously threatend, and because so far with all that has happened to me, I assumed that the damage that has been done could merely be halted at best, but not reversed. The doctors told me there is a possibility of my vision getting better. And a possibility is all I need.
Monday, April 5, 2010
Like it's happening all over again...
So here it is. That moment that I always knew was a possibility from the moment I was first told I have cancer. My cancer is already stage IV, which means it's already metastasized, but up until this point it had just been to bone. Sure it wreaked a lot of havoc, broke my back, nearly paralyzed me, but it wasn't overtly life threatening. Well, it found another cozy spot to take up residence, my brain.
It still hasn't sank in yet, and I really don't even know what that means. But when my doctor called me to tell me the results of the MRI, it was the first time I heard her voice tremble.
It still hasn't sank in yet, and I really don't even know what that means. But when my doctor called me to tell me the results of the MRI, it was the first time I heard her voice tremble.
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