Written Tuesday, July 7
I know I've talked about this before, but today I really need to articulate these feelings. The saying "It takes a village to raise a child" is being revised in my house. We now say, "It takes a village to care for a cancer patient." I am so incredibly blessed to have an amazing village, one that I really didn't know existed before I got sick. I knew that there were good people in my life, and I knew that if something bad ever happened, that there was a handful of people that I could count on to help out. What I didn't know, never really expected, and have been overjoyed to learn, is that my handful of people is so, so much bigger than a handful!
As I sit here writing this, it is the first night of dress rehearsal for the girl's dance recital this weekend. For those of you non-dance moms out there, this entails three very long afternoon/evenings during which we can take pictures and videos (no pics or videos at the actual recital). It is exhausting, but also really fun to watch. This is the first time since her first recital in 2006 that I am not in the theater. Why am I telling you all of this? Because within an hour of rehearsal starting, I had ten pictures either texted or sent to me via Facebook. I know there are more coming. My village of dance mamas is determined not to let me miss out on a moment, and for that, I am so, so thankful. These are the same moms who have coordinated a schedule to make sure that the girl has not missed a class or an extra rehearsal or any sort of dance related event, many of them going out of their way after a long night of class to bring her home. And the same moms who were the first to volunteer to drive me to radiation. And the same moms who brought food, lots and lots of food, to feed my family while I was in the hospital. They have sewn costumes, done hair and makeup, cheered her on in my place, all the while making sure I had pictures and documentation of all of her accomplishments.
What is remarkable about this part of my village is that many of these women are not people I knew very well before I got sick. Sure, we have been couch surfing for years, trading stories and laughs and complaints about our children, but we didn't really know each other. Except for a few, we didn't socialize outside the studio, except maybe at a birthday party. But not one of them hesitated. Not only did they not hesitate, they didn't wait to be asked to help out. In fact, some of them wouldn't take no for an answer (you know who you are!) I am, and always will be, eternally grateful.
Another part of my village is the neighborhood of old friends, people who have know me since the way back, who know all the stories. These are the folks who have kept my spirits up, who don't mind (or at least say they don't mind) when I text them at midnight from the hospital because I am losing my mind or who send me a text or an email or a shout out from Facebookland every single day. They are the friends whose psychic messages I get loud and clear, the cheerleaders of unwavering faith. And they are the friends who let me be angry and rail against the world, the universe, G-d, wherever this dreaded disease originated and they don't judge. They rail with me, are angry with me, and when I don't have the energy, they are angry for me. And then, they help me to let go of the anger so I can heal. I don't have to question whether they will be here because I know they are always at my back. Again, eternally grateful.
Far and away the most constant and enduring part of my village are my family members. My mother-in-law and sister-in-law took turns coming in from Virginia to hold down the fort at home while Steve and my mom took care of me at the hospital. Our schedule is not for the faint of heart, but they managed, with the help of other village members, to keep everyone on track and occupied. My mother spent hours and hours and hours at the hospital and then generously gave up half her room so that I could come home. For months she shared her space with me and my oh-so-stylish and comfy hospital bed and medical equipment. As a mother, I know how much it must pain her to see me miserable. My brother, poor guy, moved cross country (at my insistence), the day after my first surgery, to start a new job. I know he has hated every minute of being away, but I can feel the love and support from him from all the way from Maryland. He has kept me on my toes, listened while I complained, and made me laugh, all the while making sure I am keeping it real. No hiding anything from him.
Of course, the most important members of my village are my husband and those three little bodies (okay, two little bodies and one who has suddenly shot up inches above me). I am going to save them for my next post...It Takes a Village, Part 2, since this post has gotten awfully long.
Love and sparkles to you all,
Gayle
Showing posts with label tongue cancer. Show all posts
Showing posts with label tongue cancer. Show all posts
Thursday, July 9, 2015
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
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!
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| 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. |
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| 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. |
Sunday, May 3, 2015
I've got the whole world....
I've got the whole world...on my chest. Huh? That is definitely not how the song goes, but let me explain...
I went in on Friday for my "dry run" to check that all the settings are correct on the radiation machine. I tried everything in my power to avoid going to this appointment, but there was really no getting around it. I had to go, but I knew it was going to be a challenge because it was going to involve the mask. Oh that dreaded, infernal mask. I really, really wish I was being overdramatic when I talk about it, but alas, I am not. I did take antianxiety meds before I went, and I know that helped, but it didn't stop me from having a moment of sheeer panic as they positioned the mask over my face. I think the worst part is hearing the sound of it being clipped to the table and knowing I am stuck. I hate not being in control and in this situation, I could not be more helpless. I did manage to quell the panic...I kept going to my happy place, trying to be anywhere but on that table. When the happy place would slip away, I just kept repeating "You can do this" over and over again. In my head, my voice still sounds like me, while in real life, my voice sounds very strange. At least to me. More on that another time.
Eventually, about half an hour later when all the required x-rays were shot and the doctor was satisfied, I was released from hell, I mean, the mask. The tech assured me that the regular treatments would not be that long with the mask on. After the first one. And about every tenth one, when they will need to redo the x-rays to check that the position is still good. Hopefully by then the mask won't be as bothersome.
Before I got off the table, the tech replaced my positioning sticker (see previous post) with a tattoo. A teeny, tiny tattoo. Really it just looks like a freckle slightly darker than the million freckles around it. This is where the song comes in...
I was at the dance studio yesterday, hanging with the other dance mamas, showing off my new tat. (Because I am so, so tough!) One of my friends (you know who you are, crazy lady!) looked at the teeny tiny spot and declared that she knew exactly what it was! It was most obviously a tattoo of the entire Earth...from very, very far away. Have I mentioned how this mama makes me laugh? Ever since then, I've had the song "I've got the whole world in my hands" stuck in my head, but, of course, I have to replace "in my hands" with "on my chest." I love having friends who are just a little twisted, just like me! I really did try to take a picture of the teeny, tiny Earth to show all of you, but it just doesn't show up well in pictures. Oh well, you'll just have to use your imaginations.
Today was spent at the last dance competition of the year. I am so thankful that radiation managed to be pushed off until the girl was done competing. I start my thirty days of treatment on Thursday and will go through the third week of June. I am hoping and praying that the side effects take it easy on me, but I am preparing for the worst. In the meantime, I am going to attempt to keep life as normal as possible with this crazy band of loons I live with. We are winding down the end of 5th grade and Kindergarten, as well as being in the throes of three and a half. There is NEVER a dull moment around here! Thankfully, the kids have all really adapted well to my new reality. They don't even blink an eye when I have to go clean my trach or I am giving myself meds through my feeding tube. The littlest one did attempt to "fix" me with his play drill...when he headed for my trach I had to perform some elusive maneuvers to get away, but it was quite amusing to hear him telling his friends at school all about why I need the trach and tube. He is quite the expert, even telling them "It doesn't hurt Mommy anymore, but it did yesterday." Everything is yesterday for him, even things happening in the future.
I think that is about it for today. It was a long day spent sitting and cheering (okay, I can't actually scream and yell right now, but I did clap loudly!) and I am exhausted.
Sparkles and love to you all,
Gayle
I went in on Friday for my "dry run" to check that all the settings are correct on the radiation machine. I tried everything in my power to avoid going to this appointment, but there was really no getting around it. I had to go, but I knew it was going to be a challenge because it was going to involve the mask. Oh that dreaded, infernal mask. I really, really wish I was being overdramatic when I talk about it, but alas, I am not. I did take antianxiety meds before I went, and I know that helped, but it didn't stop me from having a moment of sheeer panic as they positioned the mask over my face. I think the worst part is hearing the sound of it being clipped to the table and knowing I am stuck. I hate not being in control and in this situation, I could not be more helpless. I did manage to quell the panic...I kept going to my happy place, trying to be anywhere but on that table. When the happy place would slip away, I just kept repeating "You can do this" over and over again. In my head, my voice still sounds like me, while in real life, my voice sounds very strange. At least to me. More on that another time.
Eventually, about half an hour later when all the required x-rays were shot and the doctor was satisfied, I was released from hell, I mean, the mask. The tech assured me that the regular treatments would not be that long with the mask on. After the first one. And about every tenth one, when they will need to redo the x-rays to check that the position is still good. Hopefully by then the mask won't be as bothersome.
Before I got off the table, the tech replaced my positioning sticker (see previous post) with a tattoo. A teeny, tiny tattoo. Really it just looks like a freckle slightly darker than the million freckles around it. This is where the song comes in...
I was at the dance studio yesterday, hanging with the other dance mamas, showing off my new tat. (Because I am so, so tough!) One of my friends (you know who you are, crazy lady!) looked at the teeny tiny spot and declared that she knew exactly what it was! It was most obviously a tattoo of the entire Earth...from very, very far away. Have I mentioned how this mama makes me laugh? Ever since then, I've had the song "I've got the whole world in my hands" stuck in my head, but, of course, I have to replace "in my hands" with "on my chest." I love having friends who are just a little twisted, just like me! I really did try to take a picture of the teeny, tiny Earth to show all of you, but it just doesn't show up well in pictures. Oh well, you'll just have to use your imaginations.
Today was spent at the last dance competition of the year. I am so thankful that radiation managed to be pushed off until the girl was done competing. I start my thirty days of treatment on Thursday and will go through the third week of June. I am hoping and praying that the side effects take it easy on me, but I am preparing for the worst. In the meantime, I am going to attempt to keep life as normal as possible with this crazy band of loons I live with. We are winding down the end of 5th grade and Kindergarten, as well as being in the throes of three and a half. There is NEVER a dull moment around here! Thankfully, the kids have all really adapted well to my new reality. They don't even blink an eye when I have to go clean my trach or I am giving myself meds through my feeding tube. The littlest one did attempt to "fix" me with his play drill...when he headed for my trach I had to perform some elusive maneuvers to get away, but it was quite amusing to hear him telling his friends at school all about why I need the trach and tube. He is quite the expert, even telling them "It doesn't hurt Mommy anymore, but it did yesterday." Everything is yesterday for him, even things happening in the future.
I think that is about it for today. It was a long day spent sitting and cheering (okay, I can't actually scream and yell right now, but I did clap loudly!) and I am exhausted.
Sparkles and love to you all,
Gayle
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
Friday, March 20, 2015
A Fresh Perspective
I started this blog post on Wednesday night, the night before my surgery. Technically, I guess I started it Thursday morning, because it was about 3a.m. It was a very different tone than I am finishing the post in...what a difference a day makes.
That morning, I was in despair. I had been awake most of the night, just couldn't turn off my brain. I desperately did not want to have this surgery. I was feeling frustrated and angry and couldn't understand why nothing was working. I was following my doctor's directions to the letter and yet I was still making virtually no progress, and in fact, was backsliding. I was sure that my one night in the hospital was going to turn into three or four and I just wasn't sure I could face that long a stay again. I was certain that this surgery wasn't going to work either or that they were going to find something awful or that I was just going to be stuck like this forever. I had such a bad reaction to the anesthesia after my first surgery, losing that entire week, I just didn't really want to go under again. But what choice did I have? I felt like I was stuck...damned if I do, really damned if I don't.
Fast forward to mid-day Thursday, waking up after surgery. What a difference a few hours made! The first difference...I was awake! And lucid! And could completely understand what was going on. My surgeon came in to talk to me and he was thrilled. They shaved off about half of the flap and made fresh edges on my tongue to connect the flap to. He did not see any other evidence of cancer but sent everything off to pathology just to be sure. I had a bite block in which was causing some discomfort, but in general, I could feel that everything was smaller. I was already feeling better.
After many, many hours in recovery, they finally moved me to ICU. Technically I wasn't an ICU patient, but there were no other beds. Steve laughed when he found out I was being moved to room 222...that is the exact room where I spent my first week in the hospital. I so lucked out. My nurse, Ryan, was a godsend. He was organized and patient and remembered me from before. He was more than willing to stop what he was doing and read my notes and comply with anything he could. And he was completely focused on pain relief, making sure that we stayed ahead of any pain I might have. I can't begin to say enough about having a good nurse. I have a true new appreciation for the entire profession. I learned the first time around that a good nurse can make your day, a bad nurse makes for a very, very long 12 hours. Dr. Shibuya came around in the evening and removed the bite block and for the first time in three months, I could pull my tongue back into my mouth, almost. My job was to continue working on it. Happily!!!
Fast forward to this morning. I slept some during the night..woohoo! It has been so difficult not sleeping, that even getting a few hours was amazing. Again, kudos to Nurse Ryan. He guarded my door and my sleep and wouldn't let anybody in...until the vampire came at 4:45. He has no control over that...they make the rounds to draw blood so the doctors have results before they round in the morning.
Apparently, I took my assignment very seriously. During the night, I worked to push my tongue in more and by the time Steve arrived, he was amazed to see that not only could I get it all the way in my mouth, but even behind my teeth. My teeth! I hadn't seen my bottom teeth in 12 weeks, and had only seen my top teeth when I could manage to prop my mouth open wide. Warning...gross detail follows--can you imagine not brushing your teeth for three months? So incredibly icky!!! The very first thing I did when I got home was to head to the bathroom, grab a teeny tiny toothbrush and a dab of gentle toothepaste and softly scrub my teeth. Better, not great yet, but they will get there!
The resident came by, looked me over, and declared that I would be going home today. I wanted to jump out of the bed and hug her! By three o'clock, my angelic day nurse Ruby, had my discharge papers ready to go, had me unplugged from all my tubes and wires, and had a wheelchair waiting to carry me to the car. I was free!
Soon after arriving home, Steve went to go pick up the kiddos from school. I sat outside to await their arrival. As soon as they pulled up and saw me, there were huge smiles all around! The littlest one said, "Mommy, your face is back!" Each one came and gave me the softest, gentlest kiss. My heart just soared. One of the hardest parts of these last three months has been the fact that I couldn't kiss my kids. No good morning kisses, no good night kisses, no comforting I'm sorry you got hurt kisses. I intend on making up for that...I can't wait to love all over them!
In the coming days, I am going to work up the nerve to post some pictures of this journey. The pictures aren't pretty and it isn't going to be easy, but to be honest and true to this story, I think people need to see the visuals. Then you will truly appreciate how far I have come and how difficult this cancer is to treat.
Thank you for all your continuing love and support. I have been reading all your comments here, on Caring Bridge, Facebook, and via text and email. Know that I am floating on the clouds of your words, they help more than you could ever know! Thank you for the cards that come via snail mail, the surprise gifts, the drop-offs of boxes of books. My heart is more than overflowing with your love!
Sparkles and love to you all,
Gayle
That morning, I was in despair. I had been awake most of the night, just couldn't turn off my brain. I desperately did not want to have this surgery. I was feeling frustrated and angry and couldn't understand why nothing was working. I was following my doctor's directions to the letter and yet I was still making virtually no progress, and in fact, was backsliding. I was sure that my one night in the hospital was going to turn into three or four and I just wasn't sure I could face that long a stay again. I was certain that this surgery wasn't going to work either or that they were going to find something awful or that I was just going to be stuck like this forever. I had such a bad reaction to the anesthesia after my first surgery, losing that entire week, I just didn't really want to go under again. But what choice did I have? I felt like I was stuck...damned if I do, really damned if I don't.
Fast forward to mid-day Thursday, waking up after surgery. What a difference a few hours made! The first difference...I was awake! And lucid! And could completely understand what was going on. My surgeon came in to talk to me and he was thrilled. They shaved off about half of the flap and made fresh edges on my tongue to connect the flap to. He did not see any other evidence of cancer but sent everything off to pathology just to be sure. I had a bite block in which was causing some discomfort, but in general, I could feel that everything was smaller. I was already feeling better.
After many, many hours in recovery, they finally moved me to ICU. Technically I wasn't an ICU patient, but there were no other beds. Steve laughed when he found out I was being moved to room 222...that is the exact room where I spent my first week in the hospital. I so lucked out. My nurse, Ryan, was a godsend. He was organized and patient and remembered me from before. He was more than willing to stop what he was doing and read my notes and comply with anything he could. And he was completely focused on pain relief, making sure that we stayed ahead of any pain I might have. I can't begin to say enough about having a good nurse. I have a true new appreciation for the entire profession. I learned the first time around that a good nurse can make your day, a bad nurse makes for a very, very long 12 hours. Dr. Shibuya came around in the evening and removed the bite block and for the first time in three months, I could pull my tongue back into my mouth, almost. My job was to continue working on it. Happily!!!
Fast forward to this morning. I slept some during the night..woohoo! It has been so difficult not sleeping, that even getting a few hours was amazing. Again, kudos to Nurse Ryan. He guarded my door and my sleep and wouldn't let anybody in...until the vampire came at 4:45. He has no control over that...they make the rounds to draw blood so the doctors have results before they round in the morning.
Apparently, I took my assignment very seriously. During the night, I worked to push my tongue in more and by the time Steve arrived, he was amazed to see that not only could I get it all the way in my mouth, but even behind my teeth. My teeth! I hadn't seen my bottom teeth in 12 weeks, and had only seen my top teeth when I could manage to prop my mouth open wide. Warning...gross detail follows--can you imagine not brushing your teeth for three months? So incredibly icky!!! The very first thing I did when I got home was to head to the bathroom, grab a teeny tiny toothbrush and a dab of gentle toothepaste and softly scrub my teeth. Better, not great yet, but they will get there!
The resident came by, looked me over, and declared that I would be going home today. I wanted to jump out of the bed and hug her! By three o'clock, my angelic day nurse Ruby, had my discharge papers ready to go, had me unplugged from all my tubes and wires, and had a wheelchair waiting to carry me to the car. I was free!
Soon after arriving home, Steve went to go pick up the kiddos from school. I sat outside to await their arrival. As soon as they pulled up and saw me, there were huge smiles all around! The littlest one said, "Mommy, your face is back!" Each one came and gave me the softest, gentlest kiss. My heart just soared. One of the hardest parts of these last three months has been the fact that I couldn't kiss my kids. No good morning kisses, no good night kisses, no comforting I'm sorry you got hurt kisses. I intend on making up for that...I can't wait to love all over them!
In the coming days, I am going to work up the nerve to post some pictures of this journey. The pictures aren't pretty and it isn't going to be easy, but to be honest and true to this story, I think people need to see the visuals. Then you will truly appreciate how far I have come and how difficult this cancer is to treat.
Thank you for all your continuing love and support. I have been reading all your comments here, on Caring Bridge, Facebook, and via text and email. Know that I am floating on the clouds of your words, they help more than you could ever know! Thank you for the cards that come via snail mail, the surprise gifts, the drop-offs of boxes of books. My heart is more than overflowing with your love!
Sparkles and love to you all,
Gayle
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