Showing posts with label tongue. Show all posts
Showing posts with label tongue. Show all posts
Saturday, August 22, 2015
Fighting Battles
I have been thinking a lot this week about our personal demons. We all have them. Alcohol, drugs, pills, food, shopping...we all have something we just can't resist. I have a friend who is struggling right now, fighting for her life, in fact, trying not to let her demons win. Unfortunately, I'm afraid she is losing the fight. I have tried everything I can think of to help her, but ultimately, this is a battle she has to fight on her own. I feel helpless, watching her world disintegrate and knowing that I can't do a single damn thing. Her demons have beaten her down, taken away all of her self-worth, humiliated her and left her battered and bruised from the inside out. I wish she knew how important she is to so many people, how many lives she has touched and what a huge hole she will leave if she lets those demons win. I so desperately hope she can find her fire again, her will to not just live but to live a rich and beautiful and healthy life, one filled with love and happiness, one where she keeps her demons at bay. A life where she is appreciated and accepted with all her imperfections, not belittled and beaten down, judged and left behind. I hope she knows that I will always be here, not just me, but an entire army of believers who know that deep down she is a fighter, and as long as she is fighting, we will fight with her. But we can't swing the first punch or fire the first missile. She has to do that. I know she reads my blog, so I hope these words find her, and that she finds the strength to believe in her own strength.
Before cancer, my personal demon was food. For years, I have struggled with my weight and my relationship with food. I always felt like food was the more powerful one in the relationship. I often found myself powerless to resist. I regularly overindulged, ate things that I shouldn't, or thought I shouldn't, "cheated" on whatever diet I was currently trying. I obsessed about the last piece of cake in the fridge or that perfect bite of...whatever. I went through fast food drive thrus and ate whatever would feed the demon. I stuffed myself with food that tasted good but had less than zero nutritional value, filled with chemicals and preservatives. I would make promises to myself and then break them the same day. I watched the scale go up two pounds, down one, up another three. The up was always more than the down and some days I felt as if I would never win.
To be fair, it wasn't all bad. I mean, a girl had to eat, right? Food was the one thing that was a constant in my life. It never disappointed me, it was always there when I needed it, it didn't judge me. It was there to comfort me when my father died, eased the pain of hormone shots and failed procedures when we were trying to get pregnant, and then celebrated the births of all three children with me. Food helped me make friends, impress people, get noticed. It was, and still is, a part of every life cycle event, holiday, get together, party, everything. I collected recipes and cooked, tried to replicate the treats of my childhood, with varying degrees of success, fed my family well. Food became a part of my soul, a part of my personality.
And then, cancer came calling. Eight months ago tomorrow, I had the surgery that would dramatically change my life...and my relationship with food. I have had ups and downs in terms of eating. For six weeks or so, after my second surgery, I was able to eat in limited amounts, mostly soft foods or foods I could cut into little tiny baby pieces. But other than that brief time, my entire sustenance has been food through a tube. My meals come in little boxes that I pour into a bag and pump into the port in my stomach. We joke that the boxes say "New, improved taste!" as I press the buttons to start my meal. Post radiation, I am working on swallowing. Sips of water mostly, sometimes a smoothie, as there is still too much swelling to try real food. And it is work. I have to really concentrate on swallowing so I don't choke. That makes the idea of eating a whole lot of work.
Surprisingly though, I am still obsessed with food. I watch the Food Network religiously, still tear recipes out of magazines and pin recipes to boards on Pinterest. I fantasize about what I am going to cook, to eat, when I am able. I found that I am not alone. Many of the head and neck cancer survivors that I talk to have the same obsession, and some of them have not eaten in years.
I think when food and I re-enter our relationship, there will be a new dynamic. I will not deny myself anything, that has already been done for me, in a torturous way. I will not feel guilty about eating, but I will appreciate the quality and value of the food. I will savor bites and let them linger instead of wolfing them down and not even registering a flavor. I will enjoy my relationship with food again, but I will seek out foods that are healthy and disease fighting, instead of toxic. And if I slip, that's okay, as long as I enjoyed it. There is always another meal, another day to live, to eat.
When I sat down to write today, I didn't think I had much to say. Guess I was wrong. Thanks for going on today's journey with me!
Sparkles and love to you all,
Gayle
Saturday, June 27, 2015
The Good, The Bad, and The Ugly
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
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
Monday, April 27, 2015
Planning is not as simple as it sounds.
I have started this post, restarted, walked away, started again, thought it out in my head, procrastinated, just never found the time to sit down and actually write it. And I don't know why, except that we all know procrastination is (or should have been) my middle name. Wait, no, I wasn't procrastinating...I was busy! Busy feels so good after all these months of laying around not being busy at all. I have learned that when you aren't busy, when there is no to-do list, the days are really, really, really long. Did I say really? But the last few weeks, I have been blessedly, beautifully busy. Busy being a mom (yeah, yeah, a dance mom...but not like on that show!! Well, mostly!) and a friend and a wife and a get things done, chore doing, shopping, contributing member of society. Every time I say that I hate just laying around doing nothing, someone always says "You've earned that time" or "You are healing" or "Enjoy it, it won't last." I'm sure that is all true. Doesn't matter. I still hate laying around doing nothing. Okay, once again I have veered far away from the original intent of this post. I'm so glad you are all along for this ride through my stream of consciousness...bear with me!
So last week, last Monday to be exact, Steve and I trekked out to Ontario to the radiation facility where I will be receiving my treatments. This facility is about half an hour away from home with no traffic, potentially hours with traffic (life in Southern California.) Kaiser is building a new facility about ten minutes from our house, but it isn't opening until August. So these treks out to Ontario are about to become a part of my daily routine (hopefully some of you will be joining me, shameless begging...I'm going to need some rides. As soon as I have a schedule I will let you know so you can sign up for my Radiation Chauffeur Service! Thanks ya'll...back to my regularly scheduled post...)
We have been to this building a few times before to meet with the Radiation Oncologist, but this was the first time we were coming to actually deal with the radiation beast itself. Well, almost. This was my planning appointment. Great! I'm a planner. Even though I knew better, I had this vision of people sitting around with their calendars open (okay, totally old school, I know, but it's the way my brain works) trying to find time slots that worked for all of us. Nope. Not even remotely close. What it did involve was the making of my radiation mask, scans, and stickers.
Let's start with the mask. Picture a large white tennis racket, no handle, with the strings of the racket pulled closely together. The tech, who has a much more impressive title than tech, which I can't for the life of me remember, was sweet and gentle and soft spoken, for someone who was going to wrap a hot tennis racket around my face and strap me to the table. Ouch...that sounds so violent! She truly was very sweet and was trying very hard to keep me calm. Have I mentioned yet that I took Ativan before this appointment? That was one of the crazy making drugs I took while in the hospital and I vowed to stay away from it as much as I could, but I think this exercise demanded some anxiety relief. Anyway, as I was trying to make myself comfortable on the CAT scan bed, she was dipping this mask form into super hot water to soften the mesh. When it was softened, she dried it a little and then positioned it over my face. She slowly pressed it down over me, smoothing and stretching the mesh over my features. Yes, it was as bad as it sounds, thank you for asking. Not the first time in this journey, I was actually thankful that I am almost completely blind without my glasses. It was a good thing not to be able to see what was going on around me. I closed my eyes and just kept telling myself to breathe. In and out. In and out.
What seemed like an eternity but in reality was only about two minutes was all it took for the mesh to harden into a white mesh cast of my face. Done, right? Again, nope. Not even remotely close. My kind and gentle tech then quietly began attaching the mask, with my head in it, to the table. The goal of this is for me to be immobilized for the duration of the radiation. My personal goal is not to have a total panic attack when I realize that I am bolted to the table. Breathing, breathing. The tech is quietly talking to me, reassuring me that there will always be someone watching me, all I have to do is wave my hand and they will come and release me, but that this is a necessary step. She begins making marks on the mask and places stickers, one on my chest and one on each side of my abdomen, that she also marks. This is all to line up the radiation. After a few minutes, she is done and I am ready to be scanned. She leaves the room for a few minutes, reminding me again that she is just on the other side of the wall, that she can see me and hear me and if I need her, she will be at my side in a heartbeat. While reassuring, it still does not override the fact that there is a mesh mask holding me captive. If ever there was a moment when it all hit me, it was this one. This is real, people. We are not pretending anymore. My claustrophobia and I have spent an entire lifetime avoiding situations like this, so what the hell am I doing being strapped down to a table by my head? Suddenly the table starts to move backwards and I am being scanned and measured. She comes over the speaker to tell me it is almost over, which instantly becomes my new mantra...it's almost over, it's almost over, I think I can, I think I can, I think I can. And then it is over and she is releasing me from my mask and I can sit up and I am free. The whole process, start to finish took about 20 minutes. Perhaps the longest 20 minutes of my young (!) life!
That was my planning appointment...I go again at the end of this week to do a "dry run" of the radiation, to make sure everything is programmed correctly and again I will get to wear my new fashion accessory. I will try to take a picture of it this Friday, so you can really have an idea of what I am talking about. If you just can't wait or you just like giving yourself nightmares, you can google "radiation mask" but be warned...the pictures are almost as scary as circus clowns! If all goes well at the dry run, we will schedule out my next 30 appointments...when I will actually be receiving the radiation. I am not looking forward to this all, but the sooner I start, the sooner I finish.
Oh, I almost forgot...I also get my tattoos on Friday. What my understanding is, and this could be completely false, is that where my stickers are now, they will place small dots of ink to mark the spots where the radiation machines need to line up. Hopefully those dots will be slightly less conspicuous than this:
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So last week, last Monday to be exact, Steve and I trekked out to Ontario to the radiation facility where I will be receiving my treatments. This facility is about half an hour away from home with no traffic, potentially hours with traffic (life in Southern California.) Kaiser is building a new facility about ten minutes from our house, but it isn't opening until August. So these treks out to Ontario are about to become a part of my daily routine (hopefully some of you will be joining me, shameless begging...I'm going to need some rides. As soon as I have a schedule I will let you know so you can sign up for my Radiation Chauffeur Service! Thanks ya'll...back to my regularly scheduled post...)
We have been to this building a few times before to meet with the Radiation Oncologist, but this was the first time we were coming to actually deal with the radiation beast itself. Well, almost. This was my planning appointment. Great! I'm a planner. Even though I knew better, I had this vision of people sitting around with their calendars open (okay, totally old school, I know, but it's the way my brain works) trying to find time slots that worked for all of us. Nope. Not even remotely close. What it did involve was the making of my radiation mask, scans, and stickers.
Let's start with the mask. Picture a large white tennis racket, no handle, with the strings of the racket pulled closely together. The tech, who has a much more impressive title than tech, which I can't for the life of me remember, was sweet and gentle and soft spoken, for someone who was going to wrap a hot tennis racket around my face and strap me to the table. Ouch...that sounds so violent! She truly was very sweet and was trying very hard to keep me calm. Have I mentioned yet that I took Ativan before this appointment? That was one of the crazy making drugs I took while in the hospital and I vowed to stay away from it as much as I could, but I think this exercise demanded some anxiety relief. Anyway, as I was trying to make myself comfortable on the CAT scan bed, she was dipping this mask form into super hot water to soften the mesh. When it was softened, she dried it a little and then positioned it over my face. She slowly pressed it down over me, smoothing and stretching the mesh over my features. Yes, it was as bad as it sounds, thank you for asking. Not the first time in this journey, I was actually thankful that I am almost completely blind without my glasses. It was a good thing not to be able to see what was going on around me. I closed my eyes and just kept telling myself to breathe. In and out. In and out.
What seemed like an eternity but in reality was only about two minutes was all it took for the mesh to harden into a white mesh cast of my face. Done, right? Again, nope. Not even remotely close. My kind and gentle tech then quietly began attaching the mask, with my head in it, to the table. The goal of this is for me to be immobilized for the duration of the radiation. My personal goal is not to have a total panic attack when I realize that I am bolted to the table. Breathing, breathing. The tech is quietly talking to me, reassuring me that there will always be someone watching me, all I have to do is wave my hand and they will come and release me, but that this is a necessary step. She begins making marks on the mask and places stickers, one on my chest and one on each side of my abdomen, that she also marks. This is all to line up the radiation. After a few minutes, she is done and I am ready to be scanned. She leaves the room for a few minutes, reminding me again that she is just on the other side of the wall, that she can see me and hear me and if I need her, she will be at my side in a heartbeat. While reassuring, it still does not override the fact that there is a mesh mask holding me captive. If ever there was a moment when it all hit me, it was this one. This is real, people. We are not pretending anymore. My claustrophobia and I have spent an entire lifetime avoiding situations like this, so what the hell am I doing being strapped down to a table by my head? Suddenly the table starts to move backwards and I am being scanned and measured. She comes over the speaker to tell me it is almost over, which instantly becomes my new mantra...it's almost over, it's almost over, I think I can, I think I can, I think I can. And then it is over and she is releasing me from my mask and I can sit up and I am free. The whole process, start to finish took about 20 minutes. Perhaps the longest 20 minutes of my young (!) life!
That was my planning appointment...I go again at the end of this week to do a "dry run" of the radiation, to make sure everything is programmed correctly and again I will get to wear my new fashion accessory. I will try to take a picture of it this Friday, so you can really have an idea of what I am talking about. If you just can't wait or you just like giving yourself nightmares, you can google "radiation mask" but be warned...the pictures are almost as scary as circus clowns! If all goes well at the dry run, we will schedule out my next 30 appointments...when I will actually be receiving the radiation. I am not looking forward to this all, but the sooner I start, the sooner I finish.
Oh, I almost forgot...I also get my tattoos on Friday. What my understanding is, and this could be completely false, is that where my stickers are now, they will place small dots of ink to mark the spots where the radiation machines need to line up. Hopefully those dots will be slightly less conspicuous than this:
I have to keep the stickers on until my appointment on Friday, when I will have had them for about two weeks. Now that I am used to them, except when they itch, I don't even notice them anymore. It sort of reminds me of the days when one of my kids would put a sticker on my shirt and I would forget about it and then go out in public and not be able to figure out why people were looking at me funny. And then I would get home and look in the mirror and realize there was a princess or a robot sticker firmly attached to my chest. Sort of the same thing, dontcha think?
If you are still reading this, congrats...you have made it to the end of this post! I keep telling myself I am going to be succinct, but let's be honest, that is just not going to happen, now is it?
Wishing you a beautiful Monday!
Sparkles and love to you all,
Gayle
Monday, March 16, 2015
A new week, a fresh start
I wish I could say that the last few weeks had been a blur, that time is just flying by. But that would be a bald-faced lie. My days are long and pretty tedious, but they were tolerable, as long as my tongue was shrinking and I was making progress toward recovery, I could handle it. And I was making progress. It was slow, but it was there. And then, like someone grabbing the needle and scratching it across a record, it all came to a grinding, deafening halt.
About two weeks ago, my tongue started to swell again. I didn't think much about it, it always swelled a little bit in the evening, the result of too much talking, I thought. It was an annoying fact of my life, but it generally went back down in the morning. And then it didn't. It stayed swollen and grew more and more until I was back to having this huge, unwieldy, uncomfortable piece of meat hanging out of my mouth. And the pain that had moved away, came creeping back in, slowly at first, then ever increasing, until some moments, I felt like, feel like, a freight train is roaring through my jaw, my neck, my ear. I was so excited to be off the pain meds during the day, I was beginning to feel like me again. Once again, with the swelling and the pain, I feel somewhat like an imposter in my life, hanging out at the edges, not really taking part.
My surgeon is not happy with this turn of events. So, back to the drawing table we go, or in this case, the operating room. My surgical team will reunite this Thursday to debulk my tongue. They will go in and take out some of the excess tissue that is in there (ah yes, even my tongue is chunky. I have been told that because of my extra "padding", when they did the flap, the layer of fat was thicker than expected and they could only shave off so much without risking the integrity of the flap.) He has assured me that this is relatively minor compared to what I have already been through (My brother's response to that claim? Only an organ transplant wouldn't be minor compared to what I have already been through!) and that it might even be outpatient or at most one night in the hospital. I don't kid myself into believing that it would actually be outpatient, but hopefully I will manage to break out after only one night. We all know how much I loved being in the hospital last time!
Spitballs! I am feeling frustrated and discouraged and more than a little nervous. I am ready for something to go right in this process, to be easy. I guess that is my lesson...there is no easy when it comes to cancer. Expect the worst and you won't be disappointed, isn't that how the saying goes? It goes against my nature to think like that though, so I have to just keep putting my faith in the process. This surgery has to work, my tongue will get smaller, I will be able to move on to the next set of challenges.
My one sparkle for today...I have been walking in the mornings after I do my first feeding and before it gets too hot (you know, because it is still winter and all!) We have been in this house almost a year, but I am still exploring the neighborhood. Today I walked a street I have only driven down before. Driving, I wasn't able to appreciate the work that has been put in to many of these homes, to see the love and care in the landscaping. That is one of the gifts cancer has given me...I have been forced to slow down, to look around and appreciate my surroundings, to smell the flowers and count the lizards darting across the sidewalk.
Love to you all,
Gayle
About two weeks ago, my tongue started to swell again. I didn't think much about it, it always swelled a little bit in the evening, the result of too much talking, I thought. It was an annoying fact of my life, but it generally went back down in the morning. And then it didn't. It stayed swollen and grew more and more until I was back to having this huge, unwieldy, uncomfortable piece of meat hanging out of my mouth. And the pain that had moved away, came creeping back in, slowly at first, then ever increasing, until some moments, I felt like, feel like, a freight train is roaring through my jaw, my neck, my ear. I was so excited to be off the pain meds during the day, I was beginning to feel like me again. Once again, with the swelling and the pain, I feel somewhat like an imposter in my life, hanging out at the edges, not really taking part.
My surgeon is not happy with this turn of events. So, back to the drawing table we go, or in this case, the operating room. My surgical team will reunite this Thursday to debulk my tongue. They will go in and take out some of the excess tissue that is in there (ah yes, even my tongue is chunky. I have been told that because of my extra "padding", when they did the flap, the layer of fat was thicker than expected and they could only shave off so much without risking the integrity of the flap.) He has assured me that this is relatively minor compared to what I have already been through (My brother's response to that claim? Only an organ transplant wouldn't be minor compared to what I have already been through!) and that it might even be outpatient or at most one night in the hospital. I don't kid myself into believing that it would actually be outpatient, but hopefully I will manage to break out after only one night. We all know how much I loved being in the hospital last time!
Spitballs! I am feeling frustrated and discouraged and more than a little nervous. I am ready for something to go right in this process, to be easy. I guess that is my lesson...there is no easy when it comes to cancer. Expect the worst and you won't be disappointed, isn't that how the saying goes? It goes against my nature to think like that though, so I have to just keep putting my faith in the process. This surgery has to work, my tongue will get smaller, I will be able to move on to the next set of challenges.
My one sparkle for today...I have been walking in the mornings after I do my first feeding and before it gets too hot (you know, because it is still winter and all!) We have been in this house almost a year, but I am still exploring the neighborhood. Today I walked a street I have only driven down before. Driving, I wasn't able to appreciate the work that has been put in to many of these homes, to see the love and care in the landscaping. That is one of the gifts cancer has given me...I have been forced to slow down, to look around and appreciate my surroundings, to smell the flowers and count the lizards darting across the sidewalk.
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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