The human body is nothing short of a miracle! Cut it open and it can heal. Remove blood and it regenerates more. Each one of us owns the most exquisite machine ever produced! Even more remarkable is that no two are exactly alike. Throughout my battle of the "C", I have been nothing short of amazed. The stories I have read, inspire me. The people who have reached out to me with their own stories have moved me to push my self. In fact I have found that the community of survivors that I find myself becoming involved with is very much a "pay it forward" group of people! There is so much good flowing toward me constantly! And then there is my "Blow Hole"
What is a blow hole you ask? Remember me whining about my trech and how bad I wanted it out? Well as it turns out that is what you get. They take it out. OK, they take it out and then what? Nothing! Huh? Yes, they take it out and then nothing. You have a hole in your neck left to close on it's own! I have had countless employees over the years who have had tongue rings. Back in the day, I even had a few of my own body piercings. I know that when they are removed they heal up. For this reason, every employee I have had with a tongue piercing always tried to ignore the corporate mandates of no piercings! But it will close up by the end of my shift, They'd whine. Followed by me explaining that they should have thought of that prior to having the piercing in the first place.
My blow hole is somewhat different than that. First of all it looks to be approximately an inch and a half long and set on an angle. I think that angle was created by the swelling in my neck and, not, god forbid carelessness on the part of my brilliant doctor! Secondly it is quite unnerving to see a slash in one's own throat! Of course the hole is protected all day and night by a gauze pad taped over it, so I really only see it during bandage changes (i.e. last nights face book post about realizing I didn't have Beiber Fever as I was more interested in changing my bandage than enduring his performance). But seriously, you can't put a few stitches or staples in it? Warm breaths occasionally sneak out of it to remind me that it is open for business. Yesterday while in the shower I forgot myself while washing my face, sprayed my neck and almost drowned! The blow hole is a pain in the, well, throat I guess. If it were a pain the butt that would be quite another type of blow hole.
In the long run, I am quite aware that the blow hole is minor. I am sure I will find something else to complain about as the blow hole closes up. Most likely my skin grafts! The good news here is that I am feeling like my feisty self again and that alone is worth putting up with the blow hole!
Monday, February 14, 2011
Sunday, February 13, 2011
If it's not one thing it's another....
I love that line. It never fails to make me think of Gildna Radner! Rosanne Rosanna Danna was one of my favorite characters! (If you don't know who that is, I envy your youth! now go and hit u tube!) The thing is healing really isjust like that. It's never just one thing!
At the start of this journey it was the tumor on my tongue causing pain. Then having to take time off from work. (but that's where my identity comes from who will I be now?) Then it was surgery and getting ready for that. By the time I was laying in pre-op, I'd forgotton all about the tumor because now I was about to be sliced open wide enough to have someones hands in my mouth thru my neck. Thru it all there has been prayer. Mine, my friends, there friends, strangers. I found myself prior to surgery giving money to homeless people to hear the "god bless you". (Hey, when it comes to your health never leave any stone unturned! and no, I'n not above buying a prayer here and there).
Then waking up there were themorphine derived hallucinations. Those took up a lot of time on their own. The feeding tube was a nightmare from the start of recovery. It was sewn into my nose causeing nightmares of being dragged by a large hook in my nose. Then it became my trech always needing suction as my immune system worked to get it out of my body. Then the war of the nurses. The good nurses hovering not letting me sleep, as if I could.. The bad nurses that I couldn't get to come when called (I know they were busy, but 20 to 30 minutes, really?)
It has played out this way thru the whole journy of healing. Once my trech and feeding tube were removed the focus turned to my cast. Now it's bugging me, along with the trech removal. It turns out they don't stitch it up, just let it heal on it's own. Now I have a "blow hole". On and on. Never satisfied. There is , of course, a lesson in all of this for me. If it's not one thing it's another started long before the cancer. Always restless, never satisfied. I was one of the people who believed that they appreciated beauty, but missed it all around me. How amazing the sun feels on the back of your neck after being cooped up too long. Just how cute my dogs are curled up on my legs while I type. The dappled light of the huge but unidentified tree in our front yard. How amazing the body is. I believe from hear on out it's up to me to not only seek out beauty in the moment, but stive to live in the moment..
And yes, I love to bitch and complain at the end of a long day, but reciently it hit me; how amazing would it be to feel peaceful at the end of a long day? The truth is I've always felt unnoticed. I am starting to see that the reality is that I have allowed my focus to be occupied by unnecessary thoughts to the point that I couldn't have felt noticed had I been on a stage at the Hollywood Bowl.
So what I'm saying here is this. If it's not healing from cancer, it's healing from my own warped self image. And as frightening as this sounds I believe that that warped self image may have led in some spiritual way to the cancer. It's odd, but as this journey began, I felt very strongly that it was bigger than the cancer. I think I have a new motto: Heal Big, Win Big!
At the start of this journey it was the tumor on my tongue causing pain. Then having to take time off from work. (but that's where my identity comes from who will I be now?) Then it was surgery and getting ready for that. By the time I was laying in pre-op, I'd forgotton all about the tumor because now I was about to be sliced open wide enough to have someones hands in my mouth thru my neck. Thru it all there has been prayer. Mine, my friends, there friends, strangers. I found myself prior to surgery giving money to homeless people to hear the "god bless you". (Hey, when it comes to your health never leave any stone unturned! and no, I'n not above buying a prayer here and there).
Then waking up there were themorphine derived hallucinations. Those took up a lot of time on their own. The feeding tube was a nightmare from the start of recovery. It was sewn into my nose causeing nightmares of being dragged by a large hook in my nose. Then it became my trech always needing suction as my immune system worked to get it out of my body. Then the war of the nurses. The good nurses hovering not letting me sleep, as if I could.. The bad nurses that I couldn't get to come when called (I know they were busy, but 20 to 30 minutes, really?)
It has played out this way thru the whole journy of healing. Once my trech and feeding tube were removed the focus turned to my cast. Now it's bugging me, along with the trech removal. It turns out they don't stitch it up, just let it heal on it's own. Now I have a "blow hole". On and on. Never satisfied. There is , of course, a lesson in all of this for me. If it's not one thing it's another started long before the cancer. Always restless, never satisfied. I was one of the people who believed that they appreciated beauty, but missed it all around me. How amazing the sun feels on the back of your neck after being cooped up too long. Just how cute my dogs are curled up on my legs while I type. The dappled light of the huge but unidentified tree in our front yard. How amazing the body is. I believe from hear on out it's up to me to not only seek out beauty in the moment, but stive to live in the moment..
And yes, I love to bitch and complain at the end of a long day, but reciently it hit me; how amazing would it be to feel peaceful at the end of a long day? The truth is I've always felt unnoticed. I am starting to see that the reality is that I have allowed my focus to be occupied by unnecessary thoughts to the point that I couldn't have felt noticed had I been on a stage at the Hollywood Bowl.
So what I'm saying here is this. If it's not healing from cancer, it's healing from my own warped self image. And as frightening as this sounds I believe that that warped self image may have led in some spiritual way to the cancer. It's odd, but as this journey began, I felt very strongly that it was bigger than the cancer. I think I have a new motto: Heal Big, Win Big!
Saturday, February 12, 2011
Faith, Fantasy and Attention Deficite Disorder
While doing some research today I wondered onto the Oral Cancer Foundations website. A lot of great info until you read mortality rates. 27,000 people diagnosed with some sort of oral cancer each year with only half of those alive at the end of 5 years (the most important milestone for cancer survivors).Those are some pretty heavy odds you might be thinking. I just got mad! Screw you, I thought!
Where does this come from when one of us is presented with someone else's truth we say Screw you instead of listening? Is this a form of denial? Faith? Am I crazy? It's at time's like these that I am truly grateful to be the poster child for ADD! I won't really remember the statistics in a day or so and will be working on my road to recovery. I believe that my ADD may be severing me in terms of long term health. In fact I think my personal columns of health include Faith (both my own and everyone else's, getting those prayers going and having people know that you are healthy before we can see the physical proof is one of the strongest medicines in the universe. It is our connection to God!) Fantasy, my ability to see my future (and everyone else's ability to clearly see me in the future). and finally Attention Deficit Disorder: this one is personal to me (unless you are ADD as well, then please include yourself) How can you that possibly help you, you may ask? Simple I can forget about the troubling info that I've been given (allowing for the faith and fantasy to take over),
Now some of you are probably about to do a chicken neck and exclaim "You Crazy!" Hear me out. I get your argument (I'll forget about it, but for the time let's just say I understand. Faith allows us to see the world removed from the physical bonds. It tells us that we are one with god! Yes I know all of the arguments against it. Faith is just for the weak. Prayer doesn't work. I pray to win the lottery every week and I'm still working at a 9-5 job (therefore prayer doesn't work) OK, we have all prayed for come crazy stuff. It does not mean that the perfect words put out into the universe at the right time with the right intent won't bring the right result. Think of wishes as prayers, how many of yours have been answered over the years. Now if you combine those with some sort of action what was the result? The new job, car, perfect hair cut? You are hopeful realizing that I am right! If not, it's cool, I still have faith.
Fantasy, works hand in hand with faith. It helps us see better times, when we are full bore in the worst of times. It creates the world of tomorrow. Scientists are remarkable fantasizes! And OK it helps us waist time when we are bored. I can't tell you how many times I've been interviewed by Oprah and Ellen on the way to work! Thank god for hands free. People don't freak out when they see talking to yourself anymore.
And as for ADD, I will use the power of forgetting the negative! This allows me to focus on the positive in my life and ultimately heal. Maybe it's too simplistic and maybe I seem trapped by some in a fantasy where I am failing to take the statistics into account. To those people I say "screw you"! There is no way, I won't be here five years from now. I have faith in the future that I have seen, and you better believe that I'll be around!
Where does this come from when one of us is presented with someone else's truth we say Screw you instead of listening? Is this a form of denial? Faith? Am I crazy? It's at time's like these that I am truly grateful to be the poster child for ADD! I won't really remember the statistics in a day or so and will be working on my road to recovery. I believe that my ADD may be severing me in terms of long term health. In fact I think my personal columns of health include Faith (both my own and everyone else's, getting those prayers going and having people know that you are healthy before we can see the physical proof is one of the strongest medicines in the universe. It is our connection to God!) Fantasy, my ability to see my future (and everyone else's ability to clearly see me in the future). and finally Attention Deficit Disorder: this one is personal to me (unless you are ADD as well, then please include yourself) How can you that possibly help you, you may ask? Simple I can forget about the troubling info that I've been given (allowing for the faith and fantasy to take over),
Now some of you are probably about to do a chicken neck and exclaim "You Crazy!" Hear me out. I get your argument (I'll forget about it, but for the time let's just say I understand. Faith allows us to see the world removed from the physical bonds. It tells us that we are one with god! Yes I know all of the arguments against it. Faith is just for the weak. Prayer doesn't work. I pray to win the lottery every week and I'm still working at a 9-5 job (therefore prayer doesn't work) OK, we have all prayed for come crazy stuff. It does not mean that the perfect words put out into the universe at the right time with the right intent won't bring the right result. Think of wishes as prayers, how many of yours have been answered over the years. Now if you combine those with some sort of action what was the result? The new job, car, perfect hair cut? You are hopeful realizing that I am right! If not, it's cool, I still have faith.
Fantasy, works hand in hand with faith. It helps us see better times, when we are full bore in the worst of times. It creates the world of tomorrow. Scientists are remarkable fantasizes! And OK it helps us waist time when we are bored. I can't tell you how many times I've been interviewed by Oprah and Ellen on the way to work! Thank god for hands free. People don't freak out when they see talking to yourself anymore.
And as for ADD, I will use the power of forgetting the negative! This allows me to focus on the positive in my life and ultimately heal. Maybe it's too simplistic and maybe I seem trapped by some in a fantasy where I am failing to take the statistics into account. To those people I say "screw you"! There is no way, I won't be here five years from now. I have faith in the future that I have seen, and you better believe that I'll be around!
Friday, February 11, 2011
Good Jeans and good genes....
First an update: I saw the doctor yesterday and found out they got all of the cancer from the tongue! Unfortunately on a microscopic level it has spread to my lymph nodes on the right side of my neck. In a few weeks I will need to undergo radiation and most likely chemo therapy. I was disappointed, of course, but know that I have the personal strength to get thru this (OK, I didn't feel like that in the doctors office, but after not being able to sleep for hours remembered the truth about myself and that is I am tough!)
My healing is happening at an amazing pace.that has surprised even my doctor. My trech was removed today and (Surprise) so was my feeding tube. It's just all me now. I even got to take a shower after some creative plastic wrapping for the cast on my arm and leg (from the skin grafts). OK here we go.
There is nothing like a good pair of jeans. The best jeans become a part of you. Define you. You drag them out whenever your down, whenever your up and want to look even better. I spent years rejecting jeans, but just last year bought a pair I love and rarely take them off. They have a sleek dark wash that looks dressed up or down. The denim market has exploded over the past 20 years. Jeans in the $200 and up category came out and I wondered who would wear those? It seems everyone, except for me that is. My favorite jeans do not have a fancy pedigree. In fact they only cost $35.00. They are Levi's, an American classic. Tough and cool enough to dress up for the theater. They're simple lines is what I believe great design to be all about.
Good Jeans don't become a part of you, they are you. Genes come down the line each time combined creating a new exact person. Some sleek, some tall. some a bit big busted, some with a big tush. My Genes, much like my Jeans seem to be of the simple lot. German (farmer stock), Irish and Cherokee Indian blended to make me the unique expression that I am. Like most of the men in my family, and like my favorite jeans, I have become better over time. My weight bounced around all of my life, but seems to have found a nice range. My face has mellowed and actually become handsome over the years. Just a touch of grey sprinkled thru my brown hair over the past few years, giving me if not a wiser look, a slightly more mature look (and god only knows, I could use a little maturity. I still play like a big kid).
And also, like my favorite jeans, I am tough! Made to survive all of the wear the universe can dish out. I wonder sometimes if I was genetically predisposed to pick out my simple genes. Think about it. Look at your jeans and then look at your genes. Is there a commonality? I have found that I don't need the designer jeans, and, in dealing with my cancer I am glad to have my simple peasant stock genes. I am healing rapidly and day by day can do more.. So the next time I start thinking that I'm not good enough, and can't get thru this, I'm going to pull out my jeans and put them on as if they were my armour. They are the best representation of me in my closet, and with the simple act of wearing them, I let to universe know this. You can't beat an American classic!
My healing is happening at an amazing pace.that has surprised even my doctor. My trech was removed today and (Surprise) so was my feeding tube. It's just all me now. I even got to take a shower after some creative plastic wrapping for the cast on my arm and leg (from the skin grafts). OK here we go.
There is nothing like a good pair of jeans. The best jeans become a part of you. Define you. You drag them out whenever your down, whenever your up and want to look even better. I spent years rejecting jeans, but just last year bought a pair I love and rarely take them off. They have a sleek dark wash that looks dressed up or down. The denim market has exploded over the past 20 years. Jeans in the $200 and up category came out and I wondered who would wear those? It seems everyone, except for me that is. My favorite jeans do not have a fancy pedigree. In fact they only cost $35.00. They are Levi's, an American classic. Tough and cool enough to dress up for the theater. They're simple lines is what I believe great design to be all about.
Good Jeans don't become a part of you, they are you. Genes come down the line each time combined creating a new exact person. Some sleek, some tall. some a bit big busted, some with a big tush. My Genes, much like my Jeans seem to be of the simple lot. German (farmer stock), Irish and Cherokee Indian blended to make me the unique expression that I am. Like most of the men in my family, and like my favorite jeans, I have become better over time. My weight bounced around all of my life, but seems to have found a nice range. My face has mellowed and actually become handsome over the years. Just a touch of grey sprinkled thru my brown hair over the past few years, giving me if not a wiser look, a slightly more mature look (and god only knows, I could use a little maturity. I still play like a big kid).
And also, like my favorite jeans, I am tough! Made to survive all of the wear the universe can dish out. I wonder sometimes if I was genetically predisposed to pick out my simple genes. Think about it. Look at your jeans and then look at your genes. Is there a commonality? I have found that I don't need the designer jeans, and, in dealing with my cancer I am glad to have my simple peasant stock genes. I am healing rapidly and day by day can do more.. So the next time I start thinking that I'm not good enough, and can't get thru this, I'm going to pull out my jeans and put them on as if they were my armour. They are the best representation of me in my closet, and with the simple act of wearing them, I let to universe know this. You can't beat an American classic!
Wednesday, February 9, 2011
Tough Love!
I stopped pushing the little button and requested to be taken of morphine all together. The light started to shine thru the corners of my drug haze cleaning out the nightmare of the past 48 hours. Nurses that had hovered for my first 48 hours were nowhere to be found after they removed the catheter. Regular suctioning of the trech that had been installed were the worst! It drummed up images that I had vowed to forget of my mother in her last hours. The helplessness, weakness and total fear as she was not able to breath for even a couple of seconds. Finally, Lew, one of my nurses informed me that I needed to get up and walk. That my road to recovery was going to be walked my me alone. She let me know pretty quickly that she was busy and I too needed to get busy healing myself. (Lew also mentioned that when she had a serious surgery she had not taken pain killers and kept walking halls until her release. OK she knows something!)
My partner Ken walked into the room. My first words of the day (all written on typing paper) was that I needed a walk. I was helped up and walked around "the triangle" a few times. Funny thing is upon returning to bed I felt better that I had in the past couple of days. OK so this stuff works. Keep at it! I bugged everyone entering my room to walk me (as I had to be assisted) The most amazing thing is that I wasn't really in any pain.Ye, there was discomfort, but not what I'd call actual pain.In my mind it seemed like my tongue should have felt like it was split in two (because it was) and that sounded like a 10 on the pain scale meter. (if you are not familiar with the pain scale meter it's a scale of one to ten of pain levels accompanied by cute little white smiley faces on the starting line and ending up red unhappy faces) As it turned out, this wasn't even as bad as I had imagined a tongue piercing to be).
Finally the night of day 4 I was placed in my own room, just down the hall from the ICU and yes, I walked there! The nurses in my new room ran the gamete of being sweet to completely only doing the bare minimum. I found I really liked the bare minimum nurses the best. They ignored the order for assisted walks and let me do it on my own. Maybe this was nuts but I figured that just around the corner there were wheel chairs and I could always have a seat if I ran our of breath. The rude awaking came when I failed to remember that I was on a liquid diet (thru a feeding tube in my nose) during one of the walks I started to feel warm drops down the back of my legs and realized the error of my ways. I sheepishly wound my wayt back to my room hoping that I wasn't leaving trails)and called for the nurse who was none too pleased but I figured that they wanted to ignore instructions they could help out a little now. I remember that sponge bath particularly well because the scene of Bo Derrick in the film (If you can call it that) being washed and exclaiming "There washing me like a horse"! Amazing what pops into your head, isn't it.
The next day came as a shock. I felt like crap. What? How is this possible? I've been walking! The lesson in day five is that I was on the road to recovery, not there yet. It also appeared that there could be some pot holes in the road as well. It continued on this way until Super Bowl Sunday. Whether it was the staff moral, lack of anything on TV, fhe fact that I'd just completed the best book that I'd in years (The Coffee Shop Chronicles of New Orleans, by David Lummis) and was suffering from post book depression (you known, when you are reading a great book that you love and don't want it to be over. You know that final page is coming up fast, your reading becomes frenzied and BAM! It's over, and even if the ending is a good one, you still want more so much so that you end up reading the afterward,, credits, etc). Ken came and had already left. I was realizing just how long my road back may take and it's wasn't going to be a matter of just days, but months) I just felt drained and then my Dr Oh came in. You're doing good he told me. I'm going to release you tomorrow! WHAT? I feel like crap! I'm happy to be going home, but this wasn't making sense.
And then it occurred to me that nothing of this had made any sense anyway. This is going to be the best year of my life so far, I thought to myself. As I heal, I'll really get to see what I'm made of. I'm finally being challenged in a way that would never could. I will walk a very different path. I can choose to become more healthy than I'd ever been before. To learn and to love like never before. I had been handed a key and I suddenly understood the light I've witnessed, in the eyes of people who had taken this journey before me!
My partner Ken walked into the room. My first words of the day (all written on typing paper) was that I needed a walk. I was helped up and walked around "the triangle" a few times. Funny thing is upon returning to bed I felt better that I had in the past couple of days. OK so this stuff works. Keep at it! I bugged everyone entering my room to walk me (as I had to be assisted) The most amazing thing is that I wasn't really in any pain.Ye, there was discomfort, but not what I'd call actual pain.In my mind it seemed like my tongue should have felt like it was split in two (because it was) and that sounded like a 10 on the pain scale meter. (if you are not familiar with the pain scale meter it's a scale of one to ten of pain levels accompanied by cute little white smiley faces on the starting line and ending up red unhappy faces) As it turned out, this wasn't even as bad as I had imagined a tongue piercing to be).
Finally the night of day 4 I was placed in my own room, just down the hall from the ICU and yes, I walked there! The nurses in my new room ran the gamete of being sweet to completely only doing the bare minimum. I found I really liked the bare minimum nurses the best. They ignored the order for assisted walks and let me do it on my own. Maybe this was nuts but I figured that just around the corner there were wheel chairs and I could always have a seat if I ran our of breath. The rude awaking came when I failed to remember that I was on a liquid diet (thru a feeding tube in my nose) during one of the walks I started to feel warm drops down the back of my legs and realized the error of my ways. I sheepishly wound my wayt back to my room hoping that I wasn't leaving trails)and called for the nurse who was none too pleased but I figured that they wanted to ignore instructions they could help out a little now. I remember that sponge bath particularly well because the scene of Bo Derrick in the film (If you can call it that) being washed and exclaiming "There washing me like a horse"! Amazing what pops into your head, isn't it.
The next day came as a shock. I felt like crap. What? How is this possible? I've been walking! The lesson in day five is that I was on the road to recovery, not there yet. It also appeared that there could be some pot holes in the road as well. It continued on this way until Super Bowl Sunday. Whether it was the staff moral, lack of anything on TV, fhe fact that I'd just completed the best book that I'd in years (The Coffee Shop Chronicles of New Orleans, by David Lummis) and was suffering from post book depression (you known, when you are reading a great book that you love and don't want it to be over. You know that final page is coming up fast, your reading becomes frenzied and BAM! It's over, and even if the ending is a good one, you still want more so much so that you end up reading the afterward,, credits, etc). Ken came and had already left. I was realizing just how long my road back may take and it's wasn't going to be a matter of just days, but months) I just felt drained and then my Dr Oh came in. You're doing good he told me. I'm going to release you tomorrow! WHAT? I feel like crap! I'm happy to be going home, but this wasn't making sense.
And then it occurred to me that nothing of this had made any sense anyway. This is going to be the best year of my life so far, I thought to myself. As I heal, I'll really get to see what I'm made of. I'm finally being challenged in a way that would never could. I will walk a very different path. I can choose to become more healthy than I'd ever been before. To learn and to love like never before. I had been handed a key and I suddenly understood the light I've witnessed, in the eyes of people who had taken this journey before me!
Saturday, February 5, 2011
What "They" say, Whoever 'They is"....
Before I start today, let me say I am typing this with a splint on one arm so I'm somewhat restricted.
They say that cancer is the "C" work, They say that cancer is frightening. They don't know why. They drive past hospitals only knowing what they've seen on Greys Anatomy or Dur jour (Note to self: Take a french class so you can use french phrases that you speak but don't know how to spell). We live our lives in fear never speaking the word lest we bring a pox on the house. We give to cancer charities, do walk-athon, out the wazoo. For what? I didn't know about breast cancer, and I hate to admit it but was not that compassionate about it. It just sounded like a little 'lump" you could just cut out. whats the big deal? (unless its the whole big removal job, that sounded scary enough, just not frightening enough to walk from
San Francisco to LA for. I will say that it feels like I have paid the high price of both my lack of compassion and my ignorance.
When the doctor told my what I was facing I wanted to go, get it out, lets move. In hind sight I don't know if I would have done it any differently, but that's how I went into it. Eager. Eager for the whole thing to be over. Today, I probably would have lingered, gone to a beach and cleaned myself in the Pacific. Gone to Nola for a quick binget and walk down the moon walk. The Mississippi River just sooths my soul and helps me to relax. There are about a thousand things I should have done because in my ignorance I didn't know the truth of what was about to happen. Here is the story (warning not for the squeamish).
You know that they were removing half of my tongue and replacing it with a graft. It would be a 10 hour surgery. I woke up at 5:00 am on Tuesday following my surgery. It could have actually been another time, that's just what the nurse told me later. They were prepping me with an additional IV and I remember the pain in the way only a wounded child knows pain. You're hurting me. Why are you hurting me? I remember my bed being rolled around a maze of walls and into an elevator the volume of the ride cranked up by the hallucinogenic effects of the morphine. (They need to come up with some pain med's that don't do that) This was a bad trip. Each new corner reviled itself as as a new entity sometimes demon) Finally In my room there was no sleep to be had. You have people prodding you constantly. Checking various items on their hourly schedule. I was given a morphine pump called my new best friend by my nurse. I was told I could push the button for some liquid relief every 10 minutes. I watched the clock which seemed frozen in time. Waiting for my relief (which never came). The nurses were completely mine the first two days (which I am now to understand is a luxury). None of them spoke English as their first language and had all had heavy accents. (with me with no Tongue and not able to speak and others with accents making this have the feel of a drug binge gone awry in a forigne country (and you know those never end well). by day 2 I was allowed to sleep for two hours at a time. Still being told by my nurse to keep plunging the morphine drip. After my dear friend Theresa paid a visit and turned into a black foam demon with shiny faux floral flourishes, realized its the drugs and got off of them. Damned the pain and the demons were freaking me out.
Gang I am cutting this short today. Typing with the arm brace is taking too much out of me. Be back soon I promise!
They say that cancer is the "C" work, They say that cancer is frightening. They don't know why. They drive past hospitals only knowing what they've seen on Greys Anatomy or Dur jour (Note to self: Take a french class so you can use french phrases that you speak but don't know how to spell). We live our lives in fear never speaking the word lest we bring a pox on the house. We give to cancer charities, do walk-athon, out the wazoo. For what? I didn't know about breast cancer, and I hate to admit it but was not that compassionate about it. It just sounded like a little 'lump" you could just cut out. whats the big deal? (unless its the whole big removal job, that sounded scary enough, just not frightening enough to walk from
San Francisco to LA for. I will say that it feels like I have paid the high price of both my lack of compassion and my ignorance.
When the doctor told my what I was facing I wanted to go, get it out, lets move. In hind sight I don't know if I would have done it any differently, but that's how I went into it. Eager. Eager for the whole thing to be over. Today, I probably would have lingered, gone to a beach and cleaned myself in the Pacific. Gone to Nola for a quick binget and walk down the moon walk. The Mississippi River just sooths my soul and helps me to relax. There are about a thousand things I should have done because in my ignorance I didn't know the truth of what was about to happen. Here is the story (warning not for the squeamish).
You know that they were removing half of my tongue and replacing it with a graft. It would be a 10 hour surgery. I woke up at 5:00 am on Tuesday following my surgery. It could have actually been another time, that's just what the nurse told me later. They were prepping me with an additional IV and I remember the pain in the way only a wounded child knows pain. You're hurting me. Why are you hurting me? I remember my bed being rolled around a maze of walls and into an elevator the volume of the ride cranked up by the hallucinogenic effects of the morphine. (They need to come up with some pain med's that don't do that) This was a bad trip. Each new corner reviled itself as as a new entity sometimes demon) Finally In my room there was no sleep to be had. You have people prodding you constantly. Checking various items on their hourly schedule. I was given a morphine pump called my new best friend by my nurse. I was told I could push the button for some liquid relief every 10 minutes. I watched the clock which seemed frozen in time. Waiting for my relief (which never came). The nurses were completely mine the first two days (which I am now to understand is a luxury). None of them spoke English as their first language and had all had heavy accents. (with me with no Tongue and not able to speak and others with accents making this have the feel of a drug binge gone awry in a forigne country (and you know those never end well). by day 2 I was allowed to sleep for two hours at a time. Still being told by my nurse to keep plunging the morphine drip. After my dear friend Theresa paid a visit and turned into a black foam demon with shiny faux floral flourishes, realized its the drugs and got off of them. Damned the pain and the demons were freaking me out.
Gang I am cutting this short today. Typing with the arm brace is taking too much out of me. Be back soon I promise!
Tuesday, February 1, 2011
That's our story....and we're sticking to it!
Hello all, this is Ken, Ran's partner, updating everyone on his surgery.
Ran went off to the OR at about 11:15am on 1/31/11. After about 9 hours the doctors both came out to give me the update - everything went as planned, no surprises! Great! So glad to hear! But 9 hours and no updates! The oncologist was done with his part after about 4 hours, "hey, my part went well" would have been nice. But to double back on Ran's comment about being a patient......BUT I'M NOT THE PATIENT!!!!! But still, I was able to keep myself occupied....plugged in my iPhone and listen to some tunes for most of the time and read through the local papers. Watching other loved ones wait, seen their doctors coming out to update, or even going home. That will be me soon.....
There was this TV screen that listed patients by a number and where they were in the process, kinda like Domino's pizza tracker.....As I sat there and watched everyone else move from green, to blue to pink,to red, Ran just stayed at blue - in OR. And stayed, and stayed. It could be abit nerve racking, but I held it together. But the best part is knowing that as of about 8pm last night, Ran is cancer free. That's our story and we're sticking to it!
Oh, and one more point to his recovery.....even in a propofol coma, Ran woke up on his own, out of sedation at 5am today! He has been very responsive, able to understand and scratch out notes for his needs. He looks like hell, but he wants to recover, and fast! He was taken off the ventilator early today and is right on schedule for his healing.
Sorry my writing isn't as insightful as Ran's. But I wanted to get an update out there for everyone. And my mind hasn't been all there either so I'm a little scattered brain. When I know more, I will let you all know!
I just love how everything is going to plan, on schedule, for something that is so unplanned!
Ran went off to the OR at about 11:15am on 1/31/11. After about 9 hours the doctors both came out to give me the update - everything went as planned, no surprises! Great! So glad to hear! But 9 hours and no updates! The oncologist was done with his part after about 4 hours, "hey, my part went well" would have been nice. But to double back on Ran's comment about being a patient......BUT I'M NOT THE PATIENT!!!!! But still, I was able to keep myself occupied....plugged in my iPhone and listen to some tunes for most of the time and read through the local papers. Watching other loved ones wait, seen their doctors coming out to update, or even going home. That will be me soon.....
There was this TV screen that listed patients by a number and where they were in the process, kinda like Domino's pizza tracker.....As I sat there and watched everyone else move from green, to blue to pink,to red, Ran just stayed at blue - in OR. And stayed, and stayed. It could be abit nerve racking, but I held it together. But the best part is knowing that as of about 8pm last night, Ran is cancer free. That's our story and we're sticking to it!
Oh, and one more point to his recovery.....even in a propofol coma, Ran woke up on his own, out of sedation at 5am today! He has been very responsive, able to understand and scratch out notes for his needs. He looks like hell, but he wants to recover, and fast! He was taken off the ventilator early today and is right on schedule for his healing.
Sorry my writing isn't as insightful as Ran's. But I wanted to get an update out there for everyone. And my mind hasn't been all there either so I'm a little scattered brain. When I know more, I will let you all know!
I just love how everything is going to plan, on schedule, for something that is so unplanned!
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