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
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!
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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. |
Friday, May 15, 2015
Seven Down, Twenty Three to Go
Wow. Seven radiation treatments done already. I have to say, certain parts are getting easier. I don't dread the mask (as much) now that I know what it is like. Now, I'm not volunteering to give up my Ativan anytime soon, but the mask part is definitely easier.
I am starting to feel the effects of the radiation. I thought I had more time, everyone told me two weeks before you see any side effects. Apparently I am an overachiever, because I started feeling fatigued around day four. I wasn't really surprised, as the fatigue that always came with an RA flare would hit me hard too.
The big one so far, one I knew was coming but mentally wasn't completely prepared for, is that I have lost my sense of taste. Not the sense of taste that would keep me from going out in yoga pants...I lost that somewhere between the first and second kid. No, my actual sense of taste. I can no longer taste (almost anything) at all. I realized it on day five when the meatballs that Steve and the girl said were so spicy, had absolutely no taste to me at all. Since then I have been experimenting with various foods, seeing if there is anything left for me at all. It seems like I can taste cold better than hot, and certain fruits. That's about it. That doesn't leave me with a lot. I do have to say that I feel like this sort of took the wind out of my sails. I have been enjoying food so much for the last two months and suddenly, it really holds very little interest for me. Today I actually used my feeding tube for food, not just medicine, for the first time in seven weeks. I expect that I will go back to the majority of my feedings through the tube in the next few days. It just isn't any fun to eat if you can't taste it! Once radiation is over, I will start experimenting again, hoping that I get something, anything back. Keeping my fingers crossed that I can be a happy foodie again someday.
I think that's about it for me today. I am definitely feeling the effects tonight, just completely exhausted and I need to save my energy for my kiddos.
Sparkles and love to you all,
Gayle
I am starting to feel the effects of the radiation. I thought I had more time, everyone told me two weeks before you see any side effects. Apparently I am an overachiever, because I started feeling fatigued around day four. I wasn't really surprised, as the fatigue that always came with an RA flare would hit me hard too.
The big one so far, one I knew was coming but mentally wasn't completely prepared for, is that I have lost my sense of taste. Not the sense of taste that would keep me from going out in yoga pants...I lost that somewhere between the first and second kid. No, my actual sense of taste. I can no longer taste (almost anything) at all. I realized it on day five when the meatballs that Steve and the girl said were so spicy, had absolutely no taste to me at all. Since then I have been experimenting with various foods, seeing if there is anything left for me at all. It seems like I can taste cold better than hot, and certain fruits. That's about it. That doesn't leave me with a lot. I do have to say that I feel like this sort of took the wind out of my sails. I have been enjoying food so much for the last two months and suddenly, it really holds very little interest for me. Today I actually used my feeding tube for food, not just medicine, for the first time in seven weeks. I expect that I will go back to the majority of my feedings through the tube in the next few days. It just isn't any fun to eat if you can't taste it! Once radiation is over, I will start experimenting again, hoping that I get something, anything back. Keeping my fingers crossed that I can be a happy foodie again someday.
I think that's about it for me today. I am definitely feeling the effects tonight, just completely exhausted and I need to save my energy for my kiddos.
Sparkles and love to you all,
Gayle
Friday, May 8, 2015
Radiation Days 1 and 2
So, I think for everyone dealing with an illness or some other life changing event, there is that one moment where it really becomes real. When I was diagnosed, the word cancer sort of floated around in the air, but my reality was all about the practicality of what needed to happen. Especially once I found out that my cancer was curable, that I wasn't looking down the barrel of a death sentence, my world became more about appointments and surgery and treatment plans and less about the cancer itself. I even felt weird saying I had cancer, because I didn't feel sick, didn't feel like it was real. I kept waiting for that moment when it would hit me...
You would think that moment would have been when I had surgery, when they cut out half of my tongue, when they cut my neck open almost from ear to ear to take out my lymph nodes. Or when I came home and couldn't talk to my babies. Or when they were fitting me for my radiation mask of doom. Or any of the other little moments that have happened since December 1 when I was told, point blank, that I had cancer on my tongue.
Maybe I'm a slow learner, but truly, my moment didn't happen until yesterday, Radiation Day 1. As they started clipping my mask down, immobilizing my head, I was listening carefully to the sound of those clips. It occurred to me, as the last one was clipped into place...this is what cancer sounds like. No one else would hear that sound, unless they had some sort of head or neck cancer that required radiation. I suddenly felt very alone, even though there were two radiation techs still in the room with me. Strangely, I was very calm. (That may have been the Ativan.) The radiation tech patted me on the leg, made sure I was okay, and left the room. I was alone and I had cancer. Since my surgery, I have had very little alone time, and absolutely no time when I didn't have something to distract me--my phone or the computer, a project to work on, trashy daytime t.v., even a book or a magazine. In this moment, I became very aware that I was alone with only me and my only distraction was whatever I could conjure up in my mind. In today's world, we have very few, almost no opportunities to shut everything else out and just be alone. Now I was being forced into aloneness, with no other choice but to entertain myself.
I am on a couple of different cancer message boards and groups and prior to this appointment, I asked for advice on how to survive being strapped to the table. The answers ranged from praying to sleeping (sleeping, really?) to meditating to total denial that it was even happening (that person must have a better imagination than I do!) As the machine started to rotate around me, I found my mind wandering all over the place. I tried just focusing on my happy place and the kid's faces, but that only lasted a few seconds at a time. I managed to spend time thinking about all the little things I want to get done around the house, reminding myself to add a multitude of appointments and rehearsals and other events to the calendar, smiling as I started counting all the blessings in my life. Well...smiling on the inside...not much room in the mask for expressing emotions.
So I made it through Day 1, just like you all assured me I would. I didn't run away and hide, which is what I really wanted to do. Instead, I pulled up my big girl panties, took my Ativan, and faced the treatment head on! (Get it? Head on?!?)
Today's appointment was a little easier...there was no mention of running away this time (although the thought did briefly cross my mind.) It was a shorter appointment because they didn't need to do x-rays. The tech explained that in the first week they take x-rays every other day, and then after that only once a week. Because they work in millimeters, they need to constantly confirm that they are hitting the right spot. She was very sweet and even helped me take some pictures of the mask. I know people have been wondering....
Now I get two days off to recover and then on Monday I get to start all over again.. Next week my appointments are in the morning, which hopefully will make my days more productive.
I have an assignment for all of you...I have been calling it the Mask of Doom but I think I need an attitude adjustment about this thing. I tell my girl all the time to choose her tude, now it is my turn to walk the walk. To really change my tude, the mask needs a new name. That is where you come in...if you have a suggestion for a more positive name for it, please leave it in the comments section below. Thank you in advance!
Sparkles and love to you all,
Gayle
You would think that moment would have been when I had surgery, when they cut out half of my tongue, when they cut my neck open almost from ear to ear to take out my lymph nodes. Or when I came home and couldn't talk to my babies. Or when they were fitting me for my radiation mask of doom. Or any of the other little moments that have happened since December 1 when I was told, point blank, that I had cancer on my tongue.
Maybe I'm a slow learner, but truly, my moment didn't happen until yesterday, Radiation Day 1. As they started clipping my mask down, immobilizing my head, I was listening carefully to the sound of those clips. It occurred to me, as the last one was clipped into place...this is what cancer sounds like. No one else would hear that sound, unless they had some sort of head or neck cancer that required radiation. I suddenly felt very alone, even though there were two radiation techs still in the room with me. Strangely, I was very calm. (That may have been the Ativan.) The radiation tech patted me on the leg, made sure I was okay, and left the room. I was alone and I had cancer. Since my surgery, I have had very little alone time, and absolutely no time when I didn't have something to distract me--my phone or the computer, a project to work on, trashy daytime t.v., even a book or a magazine. In this moment, I became very aware that I was alone with only me and my only distraction was whatever I could conjure up in my mind. In today's world, we have very few, almost no opportunities to shut everything else out and just be alone. Now I was being forced into aloneness, with no other choice but to entertain myself.
I am on a couple of different cancer message boards and groups and prior to this appointment, I asked for advice on how to survive being strapped to the table. The answers ranged from praying to sleeping (sleeping, really?) to meditating to total denial that it was even happening (that person must have a better imagination than I do!) As the machine started to rotate around me, I found my mind wandering all over the place. I tried just focusing on my happy place and the kid's faces, but that only lasted a few seconds at a time. I managed to spend time thinking about all the little things I want to get done around the house, reminding myself to add a multitude of appointments and rehearsals and other events to the calendar, smiling as I started counting all the blessings in my life. Well...smiling on the inside...not much room in the mask for expressing emotions.
So I made it through Day 1, just like you all assured me I would. I didn't run away and hide, which is what I really wanted to do. Instead, I pulled up my big girl panties, took my Ativan, and faced the treatment head on! (Get it? Head on?!?)
Today's appointment was a little easier...there was no mention of running away this time (although the thought did briefly cross my mind.) It was a shorter appointment because they didn't need to do x-rays. The tech explained that in the first week they take x-rays every other day, and then after that only once a week. Because they work in millimeters, they need to constantly confirm that they are hitting the right spot. She was very sweet and even helped me take some pictures of the mask. I know people have been wondering....
 |
| Front View of the Mask of Doom The black dots around the edges are how they clip the mask to the table. |
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| Side view...imagine that positioned over my face. Those little x marks the spot marks are where they shoot me up with laser beams |
I have an assignment for all of you...I have been calling it the Mask of Doom but I think I need an attitude adjustment about this thing. I tell my girl all the time to choose her tude, now it is my turn to walk the walk. To really change my tude, the mask needs a new name. That is where you come in...if you have a suggestion for a more positive name for it, please leave it in the comments section below. Thank you in advance!
Sparkles and love to you all,
Gayle
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
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
Thursday, April 16, 2015
Letting go of the other shoe
This has been an incredibly busy week, by my current standards. And by busy, I mean that I had three appointments. The first was with my plastic surgeon, who was all smiles when he saw me. Finally, he could see my face...and I was smiling. The only unhappy moment was when he told me that the infernal itch in my arm, the one I can definitely feel, but can't even begin to reach, may last for up to a year. Seriously? A year? Thank goodness it comes and goes, if I had it continuously for the next year, I might lose my mind, or whatever is left of it.
The second appointment was the big one, the dental evaluation. I had spoken to many of you about this and about my fears and trepidation going into this appointment. The dental eval is to figure out if you need any teeth taken out before they completely irradiate your face. The issue is that because the irradiated jawbone might not heal later, once radiation happens, you can never have another tooth pulled without running the risk of losing your jawbone to infection. Sounds fun, right? And given my history with my teeth (thanks Dad!), I was pretty certain I was going to need some teeth pulled. Then I started reading the cancer boards...not always a good idea. These boards are filled with truly amazing, inspirational people who are fighting or have already fought my war. They have walked a mile in my shoes, and so I look to them for wisdom and guidance. Many, many of them had all of their teeth pulled before they started radiation and are now living with full sets of dentures. When I read that, I started to panic a little. I mean sure, it would be great to get to pick my perfect smile, but that seems a little extreme. Other people who did not have their teeth pulled prior to radiation told horror stories about their teeth just randomly breaking off, two or more years post radiation. Ah, radiation, the gift that keeps on giving. Those stories threw me into even more of a panic. So now, I was faced with two possibilities (because there couldn't possibly be any other): have all my teeth pulled pre-radiation and deal with dentures for the rest of my life, or don't have them pulled and wait for the other shoe to drop. Neither seemed like a great choice.
Enter the dentist, not my regular dentist, but one that Kaiser is contracted with to clear folks for radiation. A dentist a very long way from my house. After a panorex and a cleaning by one very freaked out dental hygienist (for an office that specializes in people with head and neck cancers, she didn't seem to ever have seen a tongue like mine or know what to do with me and my trach!), the dentist determined that I did not need to have any teeth pulled. We brought up the concerns about losing my teeth later, but he said that if I am extra hyper vigilant about taking care of my teeth, I should be fine. I sure hope so!
Then came my most favoritest part of the appointment: I had to do impressions to fit me with my fluoride trays. You would think with all the advances in technology, they could find a better way to map your mouth than filling a huge metal, gag inducing tray with thick goop, choking you with it, telling you not to move for two minutes, then violently ripping the now dried goop off your teeth. They were only able to get an impression of my top teeth, my tongue was just too big and in the way to get that gigantic tray over my bottom teeth. So, a few hours after we arrived, we left there with one fluoride tray and instructions on how to use it. The instructions actually say "Fluoride stents should be used daily and forever." The fluoride, in addition to flossing, using the Waterpic, brushing, and various rinses throughout the day, is what is going to keep my teeth healthy, daily and forever.
As we headed toward home, I wasn't sure how I was feeling. I was relieved but scared at the same time. All these what if's were swirling around in my head. Luckily, my hero of a husband, who is used to talking me down from the ledge and putting the brakes on the crazy train, said this to me: "Whatever happens, we will deal with it WHEN IT HAPPENS." When it happens, novel concept. So as we drove, I began to let it go (those of you with young children, or just Disney fans in general, you may begin singing now. Those of you who don't know what I'm talking about, lucky you!) I stopped waiting for that other shoe to drop...I can't worry about something that MIGHT happen two or three or ten years down the road. Honestly, I have plenty to deal with right now, in this moment. Beyond just the cancer and the radiation and all the things that go along with that, I have three kids to raise. I have a tween AND a three year old (some overlapping behaviors there!) plus a sensitive six year old in the middle. I simply cannot, and will not (from now on) live my life afraid of the future. So there it is, I have let go of the other shoe. As opposed to finding the other shoe, which is a game we play every morning as the kids are scrambling to get out the front door. (Honestly, where do those shoes go? Do they just wander aimlessly around the house in the middle of the night, looking for the best hiding place? They are never, ever where we expect to find them. But I digress...}
The last appointment this week was with my surgeon, a man I have seen religiously every two weeks since my initial surgery. The most notable thing about this appointment, other than the fact that he did not stick a scope up my nose and down my throat (yay me!), was that I do not need another appointment with him until I am finished with radiation. Wow! I feel like I graduated! He did explain what will happen next, on his end of the treatment plan. Three months post radiation, he will order scans to make sure there is no more cancer (my new birthday!) and to use as a baseline. I will continue to see him throughout the year, but then I will have scans again at one and two years. He told us that if this cancer is going to recur (no thank you), there is an 80% chance it will happen in the first two years. Really, I'll take a pass. Again, not going to worry about things that I have absolutely no control over.
There is that word...control. I have a whole lot of thoughts about this subject, but this has already turned into a long post, so I think I will put that on the back burner for a while. The next major milestone comes Monday, when I go to my planning appointment for radation. Treatment should start about two weeks after that. I'm sure I will have a lot to say on that subject.
But for now...
Sparkles and love to you all,
Gayle
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