One month. It has been one entire month since I last had the energy and brain power to even attempt a blog post. In my defense, I had a good reason for going radio silent. That damn machine. It took everything out of me and I am only just now starting to get small parts of me back.
In my last post I started detailing some of the side effects of the radiation treatment. I look back on that post with fondness. I really had no idea how much worse it was going to get. I have learned not to assume that I have hit rock bottom, because every time I think to myself, "Self, I think this is the worst we could possibly feel" I am proven wrong. I could always feel worse.
As my weeks of radiation progressed, I went from mildly annoyed by side effects to laying on the bathroom floor praying to G-d that things would get better soon. The superradiated saliva I talked about earlier...that was nothing. Each day, things got progressively worse. It felt as if I had a fountain of white glue in my mouth, thick and sticky and everywhere. Up my nose, down my throat, into my trach. I was choking on glue and the only thing I could do was spit. A lot. If I was lucky, that worked for a few minutes. Most of the time, not so much. I will spare you all the gory details, but whatever you are imagining, so, so much worse. My sunburn got worse too. We are talking lobster red from about the middle of my nose to the middle of my chest. There are no pictures. There will never be pictures. And with the sunburn came the most horrific blisters, oozy and painful, as if all the nerve endings in my neck had suddenly come to the surface to be poked and pinched. The only side effect that didn't get worse were the mouth sores. Thank goodness for small favors. The sores in my mouth seemed to respond quickly to the "magic mouthwash" I was prescribed.
June 18th saw my last day of radiation. I got a certificate and everything! But it was not the end of my ordeal, not by a long shot. Every day post radiation, things kept moving downhill. I was warned about this. Nobody ever gives you a precise answer, I know, everyone is different, but I have been told that the side effects will last anywhere from two to six weeks post radiation. During that time, I am still "cooking" and can expect to continue to feel all the side effects.
I am now eight days into my post radiation life. I have only left my bedroom a handful of times in the last eight days. Except for the time I spend in the bathroom, I am propped up in bed, not moving, not talking, sometimes not doing anything but breathing. The first six of those eight days were brutal. Everyday was a little harder, a little more frustrating. I couldn't even cry about it because crying just created more sticky glue. But in the last couple of days, I have begun to see the smallest little pinprick of a glimmer of light. I had two nights of relatively good sleep (relatively being I only got up to deal with my glue issue three or four times instead of every 20-30 minutes) and that has made a huge difference. I finally seem to be in a good space with my feedings. For a while I was getting very few calories, as I was unable to do feedings regularly and when I did, there was no guarantee that I would keep anything down. I am still not getting the number of calories prescribed but I am working up to it. The blisters on my neck are healing well, thanks to the diligent care my hubs has provided. More on his amazingness in a later post...there is a lot to say on that subject. The redness in my face has progressed from lobster red to a deep freckled pink. I have enough energy to lift my head off the pillow and get my thoughts down on the page here, but I know a nap is coming as soon as I am done.
So, the good (not much, but a little), the bad (lots of that), and the ugly of my last month. Here's hoping that the good increases, the bad decreases, and the ugly just fades away.
Love and sparkles to you all,
Gayle
Showing posts with label sparkles. Show all posts
Showing posts with label sparkles. Show all posts
Saturday, June 27, 2015
Sunday, May 24, 2015
Radiation....the gift that keeps on giving
I have been putting off writing this post because I wasn't really sure what I was going to say. The last week has been pretty awful and I wasn't sure I wanted to write about all the gory details, but I promised myself I was going to be honest and open about all of this. So, no sugarcoating. This is the real deal, folks. Cancer, in all its glory.
I am now 12 days into my radiation treatments. You know that old saying about the treatment being worse than the disease? Except for the fact that this disease would kill me if left untreated, it is absolutely true. The cancer itself was a minor inconvenience, not much more than a canker sore. The treatment is so, so much more than that.
I wrote last time about fatigue and losing my sense of taste. The loss of my taste buds was almost more of a mental side effect than a physical one. And the fatigue, while draining, wasn't a deal breaker. After almost six years of dealing with rheumatoid arthritis and its side effects, I have an arsenal of tricks to keep myself going. Those strategies seemed to be working for me pretty well, so I got a little overconfident. I can do this...no problem. Ha ha, said the radiation, I'll show you. (Yes, in my head, the radiation machine and I have conversations. Don't judge.) Oh boy, is he showing me. One of the effects of head and neck radiation is that it works to destroy your salivary glands. I thought that meant that I would have a dry mouth. Eventually, that may be the case. In the meantime, I have just the opposite. I have a mouth full of saliva. It's almost like I took a big sip of water but forgot to swallow and am just constantly walking around with a full mouth. And this isn't just any plain old, run of the mill, spit. No, it is supercharged radiated saliva. It is sticky and thick, and makes me gag when I do try to swallow it. I now spend my mornings (and a good part of the rest of the day) spitting into the sink, praying desperately not to get sick. I have spent so much time in the bathroom, I keep having flashbacks to my first two pregnancies, when morning sickness was so not my friend. Trying to talk with a mouth full of goo is daunting. I am either drooling or spitting or choking, but can't seem to get the words out. As a result, I am quieter than normal (of course, not everyone thinks that is a bad thing!) Just like the food, I feel like I had good things dangled in front of me for a few months and then yanked just out of reach.
As if that wasn't bad enough, I have developed sores all around the inside of my mouth and on my tongue, as well as a wretched sore throat. The sores ache and burn like my mouth is on fire, necessitating almost constant use of pain pills. With the pain pills comes the loss of my freedom. Not that I really feel like going anywhere, but I can't drive while I am medicated.
And as if that wasn't bad enough, I am beginning to get the "radiation sunburn" that I have been warned about. Now to be honest, I am so fair and pink that I look sunburned 90 percent of the time anyway. The skin on my face and my neck is getting red and itchy, especially around the scar where my lymph nodes were removed. The only thing I am allowed to use on my skin is aloe vera gel, which seems to offer some relief on my face. Treating my neck is complicated by the fact that I still have my trach, which means I still have my trach collar. (This is the same collar that the six year old is convinced is holding my head on to my body...he was in the room the other day when Steve was changing the collar and said "Mommy, hold on tight, I don't want your head to fall off!")
And again, as if that wasn't enough, I have begun to lose my hair. They say I will only lose the hair in back, but I'm not sure exactly what that means. Even though I knew it was coming, it was surprising to run my fingers through my hair and come away with clumps. Of course, my hair being so thick, you really can't tell yet. Honestly, in the grand scheme of things, I could really care less about this one. It doesn't hurt so it doesn't bother me. Eventually it will grow back and that won't hurt either. I like things that don't hurt.
I have tried to explain to the kids that I am getting medicine from a machine, which of course that middle child of mine thought was the coolest thing he had ever heard. (Those of you who know him well will appreciate that, those that don't should know that this is a child obsessed with machines of all kinds) I took pictures of the machine to share with them and thought that I would share them here too. I know that before I started this, I had no idea what a radiation machine looked like. Not that I think I ever really thought about it, I had no reason to!
I am now 12 days into my radiation treatments. You know that old saying about the treatment being worse than the disease? Except for the fact that this disease would kill me if left untreated, it is absolutely true. The cancer itself was a minor inconvenience, not much more than a canker sore. The treatment is so, so much more than that.
I wrote last time about fatigue and losing my sense of taste. The loss of my taste buds was almost more of a mental side effect than a physical one. And the fatigue, while draining, wasn't a deal breaker. After almost six years of dealing with rheumatoid arthritis and its side effects, I have an arsenal of tricks to keep myself going. Those strategies seemed to be working for me pretty well, so I got a little overconfident. I can do this...no problem. Ha ha, said the radiation, I'll show you. (Yes, in my head, the radiation machine and I have conversations. Don't judge.) Oh boy, is he showing me. One of the effects of head and neck radiation is that it works to destroy your salivary glands. I thought that meant that I would have a dry mouth. Eventually, that may be the case. In the meantime, I have just the opposite. I have a mouth full of saliva. It's almost like I took a big sip of water but forgot to swallow and am just constantly walking around with a full mouth. And this isn't just any plain old, run of the mill, spit. No, it is supercharged radiated saliva. It is sticky and thick, and makes me gag when I do try to swallow it. I now spend my mornings (and a good part of the rest of the day) spitting into the sink, praying desperately not to get sick. I have spent so much time in the bathroom, I keep having flashbacks to my first two pregnancies, when morning sickness was so not my friend. Trying to talk with a mouth full of goo is daunting. I am either drooling or spitting or choking, but can't seem to get the words out. As a result, I am quieter than normal (of course, not everyone thinks that is a bad thing!) Just like the food, I feel like I had good things dangled in front of me for a few months and then yanked just out of reach.
As if that wasn't bad enough, I have developed sores all around the inside of my mouth and on my tongue, as well as a wretched sore throat. The sores ache and burn like my mouth is on fire, necessitating almost constant use of pain pills. With the pain pills comes the loss of my freedom. Not that I really feel like going anywhere, but I can't drive while I am medicated.
And as if that wasn't bad enough, I am beginning to get the "radiation sunburn" that I have been warned about. Now to be honest, I am so fair and pink that I look sunburned 90 percent of the time anyway. The skin on my face and my neck is getting red and itchy, especially around the scar where my lymph nodes were removed. The only thing I am allowed to use on my skin is aloe vera gel, which seems to offer some relief on my face. Treating my neck is complicated by the fact that I still have my trach, which means I still have my trach collar. (This is the same collar that the six year old is convinced is holding my head on to my body...he was in the room the other day when Steve was changing the collar and said "Mommy, hold on tight, I don't want your head to fall off!")
And again, as if that wasn't enough, I have begun to lose my hair. They say I will only lose the hair in back, but I'm not sure exactly what that means. Even though I knew it was coming, it was surprising to run my fingers through my hair and come away with clumps. Of course, my hair being so thick, you really can't tell yet. Honestly, in the grand scheme of things, I could really care less about this one. It doesn't hurt so it doesn't bother me. Eventually it will grow back and that won't hurt either. I like things that don't hurt.
I have tried to explain to the kids that I am getting medicine from a machine, which of course that middle child of mine thought was the coolest thing he had ever heard. (Those of you who know him well will appreciate that, those that don't should know that this is a child obsessed with machines of all kinds) I took pictures of the machine to share with them and thought that I would share them here too. I know that before I started this, I had no idea what a radiation machine looked like. Not that I think I ever really thought about it, I had no reason to!
 |
| I lay on the table, mask attached, and they roll the table under the giant machine. It looks very high, but they raise the table so that the machine and I are staring each other in the face. |
 |
| Once I am in position, the machine rotates around me, shooting laser beams of radiation, for about 15 minutes. It is actually quite fascinating, especially when you aren't laying on the table. |
Wednesday, April 8, 2015
Technology Fail, User Error Detected
Over the course of the last week, a number of people have expressed surprise that I am able to eat a little bit and I couldn't figure out why the surprise, I mean after all, I had a whole post about it right here on this blog. So I checked the blog...and to my shock and surprise, no post! I was sure there was a problem with the website or the internet was broken, or something, but no, turns out, it was me. Yep, user error...I wrote a great post after my last appointment with the surgeon, all about how I was cleared to eat soft foods...and then I neglected to publish it! Worse than that, I somehow managed to delete it while simultaneously not posting. I think I will blame it on the cancer...because from now on anything that goes wrong is the cancer's fault! I promise to try to be more vigilant about which buttons I push. Save and publish, save and publish, save and publish.
Okay, moving on. The past three weeks, since my last surgery, have been pretty awesome. This is truly the best I have felt in months. I am trying to make the most of this time. I know once I start radiation, life will make a dramatic shift. Feeling good is actually the reason I haven't posted much. Seriously, I am just too busy to sit down at the computer. I have been out and about, running errands, playing Mom taxi, organizing things around the house. I almost feel like the old me, except with a trach, a feeding tube, and much more time on my hands than usual. We have been in this house for almost a year and for much of that time, our combined office/craft room space has simply been a holding room for other things. At one point, I think there were more than 50 boxes stacked in this space. It isn't that big a space! So I set a goal...by April 23rd, I want to have this room completely organized and ready to be used. Why April 23rd? Simple...April 24th is our one year anniversary of moving into the house and I want to be able to say that it took me less than a year to get the craft room done. Bragging rights and all that. (We aren't going to mention the boxes and boxes of pictures stacked in the back of the playroom or the nightmare that is the garage...it's tough to combine two households!!!)
The big news from the post that I deleted instead of publishing was my reintroduction to the world of food. I was so excited when I passed my swallow test and the doc declared me ready for (soft) food. My back teeth still don't touch, so I am limited to things I don't have to chew, but I am getting really creative! I started with pudding and mashed potatoes (yes, in that order!) and have worked my way up to scrambled eggs with really, really finely chopped up turkey and cheese and even very soft matzah brei. And I discovered that matzah balls are the perfect consistency for life without chewing! I just couldn't miss all my Passover treats!
Yesterday was my third appointment with the Radiation Oncologist. The first time I saw her was the day before my first surgery, in order to confirm that surgery and then radiation was the right path. The second time I saw her was the beginning of February, when she was completely shocked and dismayed to see how gigantic my tongue still was and to give me an overwhelming amount of information about the radiation process. The appointment yesterday was also filled with an overwhelming amount of information, but at least this time I was prepared for it, having done a lot of reading. My RO is very sweet, very polite, but direct. She didn't say it exactly this way (I mentioned that she was polite, right?) but she basically told me that the next several months are going to SUCK! We talked about the process, side effects, future implications, and so on and so forth. I will get into all that at a later time. Right now I am burying my head in the sand and not quite ready to face all that reality.
I think that is enough updating for now. I've got to get back to work on the craft room...April 23rd is approaching fast!
Sparkles and love to you all,
Gayle
Okay, moving on. The past three weeks, since my last surgery, have been pretty awesome. This is truly the best I have felt in months. I am trying to make the most of this time. I know once I start radiation, life will make a dramatic shift. Feeling good is actually the reason I haven't posted much. Seriously, I am just too busy to sit down at the computer. I have been out and about, running errands, playing Mom taxi, organizing things around the house. I almost feel like the old me, except with a trach, a feeding tube, and much more time on my hands than usual. We have been in this house for almost a year and for much of that time, our combined office/craft room space has simply been a holding room for other things. At one point, I think there were more than 50 boxes stacked in this space. It isn't that big a space! So I set a goal...by April 23rd, I want to have this room completely organized and ready to be used. Why April 23rd? Simple...April 24th is our one year anniversary of moving into the house and I want to be able to say that it took me less than a year to get the craft room done. Bragging rights and all that. (We aren't going to mention the boxes and boxes of pictures stacked in the back of the playroom or the nightmare that is the garage...it's tough to combine two households!!!)
The big news from the post that I deleted instead of publishing was my reintroduction to the world of food. I was so excited when I passed my swallow test and the doc declared me ready for (soft) food. My back teeth still don't touch, so I am limited to things I don't have to chew, but I am getting really creative! I started with pudding and mashed potatoes (yes, in that order!) and have worked my way up to scrambled eggs with really, really finely chopped up turkey and cheese and even very soft matzah brei. And I discovered that matzah balls are the perfect consistency for life without chewing! I just couldn't miss all my Passover treats!
Yesterday was my third appointment with the Radiation Oncologist. The first time I saw her was the day before my first surgery, in order to confirm that surgery and then radiation was the right path. The second time I saw her was the beginning of February, when she was completely shocked and dismayed to see how gigantic my tongue still was and to give me an overwhelming amount of information about the radiation process. The appointment yesterday was also filled with an overwhelming amount of information, but at least this time I was prepared for it, having done a lot of reading. My RO is very sweet, very polite, but direct. She didn't say it exactly this way (I mentioned that she was polite, right?) but she basically told me that the next several months are going to SUCK! We talked about the process, side effects, future implications, and so on and so forth. I will get into all that at a later time. Right now I am burying my head in the sand and not quite ready to face all that reality.
I think that is enough updating for now. I've got to get back to work on the craft room...April 23rd is approaching fast!
Sparkles and love to you all,
Gayle
Tuesday, March 10, 2015
Introducing Sparkles and Spitballs
Well, here it is. So many people have told me that I need to be writing about my experiences, I finally decided to dip my toes in the water. I know it doesn't look like much yet, but as I learn more about how to configure things, I will get it looking more like me.
For those of you joining my from Caring Bridge, I will continue to post there as well. I figure Caring Bridge will be where I let you know the news of the day, if there is any. This site is more for me, sort of a cathartic journal, allowing me to really get at what it is like to have oral cancer, tongue cancer specifically, and be a mom and a wife, and try to continue living my life with some semblance of normalcy. I predict that this will be pretty no-holds barred, so if you are squeamish or get offended easily, this might not be the blog for you. I intend for this to be a truly honest account of my life right now...and it is can be pretty intense and offensive. Just keeping it real!
So why the name Sparkles and Spitballs? Sparkles was the easy part. Anyone who knows me knows my love for all things glittery and shiny. When I was first diagnosed, I asked people to send prayers, love, and sparkles. Spitballs came later. Since my surgery, I have been almost a continuous drool factory. Pretty! In the hospital they used the word "secretions" but that doesn't sound much like a kindergarten teacher, does it? My life since the surgery has been all about these secretions...too much, not enough, too thin, too thick. Honestly, I have had more conversations about saliva in the last eleven weeks than I think I have had in all my 42 years put together. So, spitballs it is!
Sparkles and Spitballs has another meaning to me as well. Recovery from this surgery has been quite challenging. I have begun to think of my days in term of good or bad, or in this case, Sparkles or Spitballs! The goal is to have more sparkle days than spitball days and thankfully, the tide is beginning to turn. Many people talk about blessings and challenges...this is just my version.
As I was thinking about starting this blog, I realized that the name has a more far reaching meaning as well. Eventually, when my whole existence is no longer focused on the foe that is this cancer, I hope that this blog will serve as a record of all the happenings here in Lipson Land. So, keeping that in mind, I am thinking that Sparkles represents that sparkly, shiny, glittery girl of ours, while Spitballs represents our two amazingly different, yet equally rough and tumble, boys.
So that's it....the first blog post. Soon I will sit down and tell the whole story of my life, or at least my life since cancer became a part of it.
Love to you all,
Gayle
For those of you joining my from Caring Bridge, I will continue to post there as well. I figure Caring Bridge will be where I let you know the news of the day, if there is any. This site is more for me, sort of a cathartic journal, allowing me to really get at what it is like to have oral cancer, tongue cancer specifically, and be a mom and a wife, and try to continue living my life with some semblance of normalcy. I predict that this will be pretty no-holds barred, so if you are squeamish or get offended easily, this might not be the blog for you. I intend for this to be a truly honest account of my life right now...and it is can be pretty intense and offensive. Just keeping it real!
So why the name Sparkles and Spitballs? Sparkles was the easy part. Anyone who knows me knows my love for all things glittery and shiny. When I was first diagnosed, I asked people to send prayers, love, and sparkles. Spitballs came later. Since my surgery, I have been almost a continuous drool factory. Pretty! In the hospital they used the word "secretions" but that doesn't sound much like a kindergarten teacher, does it? My life since the surgery has been all about these secretions...too much, not enough, too thin, too thick. Honestly, I have had more conversations about saliva in the last eleven weeks than I think I have had in all my 42 years put together. So, spitballs it is!
Sparkles and Spitballs has another meaning to me as well. Recovery from this surgery has been quite challenging. I have begun to think of my days in term of good or bad, or in this case, Sparkles or Spitballs! The goal is to have more sparkle days than spitball days and thankfully, the tide is beginning to turn. Many people talk about blessings and challenges...this is just my version.
As I was thinking about starting this blog, I realized that the name has a more far reaching meaning as well. Eventually, when my whole existence is no longer focused on the foe that is this cancer, I hope that this blog will serve as a record of all the happenings here in Lipson Land. So, keeping that in mind, I am thinking that Sparkles represents that sparkly, shiny, glittery girl of ours, while Spitballs represents our two amazingly different, yet equally rough and tumble, boys.
So that's it....the first blog post. Soon I will sit down and tell the whole story of my life, or at least my life since cancer became a part of it.
Love to you all,
Gayle
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