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.
Wednesday, August 11, 2010
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 ;-)
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