Happy Birthday to Me!!!

So have you seen or heard that lottery commercial, the one where the announcer says, "It was an ordinary day...until it wasn't."?  That is how I am feeling because yesterday was just an ordinary day...until it wasn't.  Last night I was catching up on Project Runway with my daughter, my mom got home and came in to chat with us...and I noticed I had an email from my doctor.  I didn’t say anything as they commented on the clothes coming down the runway, but I knew what this email was, what it had to be.  Of course, an uncooperative Wi-Fi and shaking hands made things challenging, but when I finally got it to open, this is what I saw:

Hi, your recent scans are clear of cancer. Just post treatment changes. This is good news.

Of course, that isn’t all it said.  The actual email runs about four pages long, as it includes all the notes from the radiologist (and has some interesting little factoids, but that’s a story for another time, nothing horrible, I promise!)  But it didn’t matter about all that.  All I could focus on were the words “scans are clear of cancer.”   Clear of cancer.  And suddenly, I could breathe again.  A big deep breath, free of worry that I might have to start all over again.  With tears in my eyes, I paused Project Runway (sorry Heidi and Tim, I was having my own make it work moment) and showed the email to my mom.  It took her a moment to focus, but as soon as she did, she was breathing again too.  Smiling and breathing.  E. took the news in stride, trying not to seem too excited (she is almost twelve you know, we must not think anything about our parents is cool!) but I could tell how happy she was.  Steve was still in the boys room, trying to coax them to sleep, but as soon as he came out, I greeted him at the door with the news.  Another deep breath and a smile.  You could almost actually see the weight coming off his shoulders.

So here is the part that might give you goosebumps or you might just shake your head at me and think I am being silly.  I knew I was going to get my results yesterday.  You know how there are dates you never forget, the good ones and the bad ones…the day you get proposed to, the day you get married, the day you find out you are going to be a parent, the day you lose a parent, the day you realize the fertility treatments didn’t work and then the day that they did, the day you find out (unexpectedly!) that you are going to be a parent for the third time, the day you find your dream house, the day you find out you have cancer.  Add all those days to holidays and anniversaries and birthdays, those are a whole lot of days to remember.  Well, yesterday was one of those days, even before I got my email.  Yesterday was my dad’s birthday.  If he were still with us, he would have been..okay, I won’t say because my parents shared a birth year and I’m sure my mother wouldn’t appreciate me announcing her age to the entire world.  My dad has been with me this whole way, making his presence known at various times.   I knew that yesterday would be the day because I knew that he wanted to be a part of the good stuff too.  So now, Dad and I share a birthday.  For the last eight years, October 7 has been a difficult, hard to be happy day, because it’s hard to be happy when you miss someone so much.  But now October 7 will be forever be a happy, celebration day because it is the day my life started over!  As I write this, it occurs to me that of course Dad was involved in this…I think he was peeved that we weren’t properly celebrating his birthday, so he wanted to make sure we did it right from now on!  (Wonder where I get that Type A, controlling stuff from?)

I know that this is not over.  I am not done cleaning up the trail of destruction the cancer left behind.  I will never be done, there will always be some effect…it changed me.  Physically as well as emotionally.  I am not the same person I was ten months ago, not even close.  I look different, I feel different, I am different.  I have a lot of work to do, hard work, work on my speech, my swallowing, my stamina, my emotions. But now I can concentrate on that work without feeling like something is hanging over my head.  And that my friends, is a very good feeling.

I have so much more I want to say but I need to get moving with the rest of my day.  I have orders to fill (yay!) and work to do.  I was actually in the middle of a blog post yesterday when I had to leave to play dance mom, so expect another post either later today or tomorrow.  And thank you for the love, the texts, the messages, the comments on my FB post.  Having all of you out there supporting me has made this whole thing just a little easier.  You are one of the blessings that I count regularly.

Love and sparkles,
Gayle

It's Alive!!!

Hi Friends...

First, can I just say the response to my last post was overwhelming.  The number of texts and emails and messages and high-fives I have gotten is amazing.  Thank you for having my back!  It warms my heart to know that so many people are on my team...and how many people wanted to take those girls out back behind the woodshed and give them a good wallop across the backside.  (Okay really...I have never lived anywhere with a woodshed, so I'm not sure why that phrase popped into my head, but it seemed to work there!)

An interesting discussion did come out of this.  Obviously my boys are too young to read my blog and my daughter is not usually interested...she is living it, why would she need to read about it.  But this post was different and I insisted that she read it.  Bad words and all...she knows I'm not perfect and I know she has heard those words before.  (We did have quite an interesting discussion about the phrases "meth head" and "crack whore."  I think I did a pretty good job explaining them without actually having to define the word whore  Not sure I could have managed to get through that one!)  She read it and then went off and did her own thing for a while.  A few hours later, in the car on the way to dance (because we are always in the car on the way to dance!) she asked me some questions about why they behaved the way they did and why people were so mean.  She had some interesting insights...I forget sometimes that my little girl is not so little anymore.  (Insert sad face here!)  She said she thought that their parents must not have done a very good job with them and that she thinks they must not feel very good about themselves to treat other people like that.  Now, I know better than to gush over her about things like that (so not cool, Mom!) but inside I was gushing like crazy.  She promised that she would never, ever, ever behave that way toward another person.  And I totally believe her.  This year has changed us all so much.  Sometimes I get so wrapped up in my own stuff that I forget about the impact all of this has had on the whole family.  I'm glad kids are so resilient...while I will never forget this year, they will be able to push it to the back of their minds and mostly forget all about it.

But now, the real reason for today's post...drumroll please...My Etsy shop is officially open!!!  Yay!  It has been a couple of weeks filled with lots of applications, paperwork, product trial and error, market research (thank you to those friends that let me badger them constantly!) and tons of time taking pictures and writing policies and listings.  A big thank you to my VP of all things Technical (Steve, if anybody was wondering) and my legal department (again, if you are wondering, that would be my mom!)  Without their help, my ship would have already sunk!  I have a few items already listed, with more to come in the next few days.  I expect to add items pretty regularly, so please, check back often.  The address is www.sparklesandspitballs.com.  Right now I am maintaining two separate sites, this one and the shop, but soon you will be able to find both in the same place...how convenient!  So, come visit, drop me a message through Etsy Conversations, leave me a review, and shop if you find anything that makes your heart skip a beat.  Don't see what you are looking for?  Send me a message and together we can come up with a custom listing for you!  Thank you for all your support on this.  While the last few weeks have been busy and even exhausting, they have also been exhilarating.  I'm a small business owner!  Who woulda thunk it?

That's it for now...don't forget to tell all your friends about www.sparklesandspitballs.com and the badass, meth head crack whore who is the crazy lady behind it all!

Love and sparkles to you all,
Gayle

P.S.  For those of you keeping score, I am still waiting for the results of my scans.  Anxious, nervous, hopeful, impatient.  All at the same time.  As soon as I know, you will know!  Cross my heart! --G.

The ghouls are already out...but so are the superheroes.

Warning...this will probably be a long post because I am all fired up.  Hopefully you will be too by the time you finish reading this.  Another warning...there may be some harsh language.  Did I mention I am all fired up?

Before I get into my story, I want to say that I have made major progress in the last few weeks.  I am feeling better, I am looking better, the swelling in my face and neck is way down, I'm really feeling close to about halfway human.  Considering where I have been, I will take it!  I have also made major progress in my confidence level.  I've had conversations about this with several people and what I have realized is that I just really, really don't give a shit what people think anymore.  Yes, I look different, but I don't feel like a major freak show anymore, so whatever.  I have standard answers for when people ask me questions (which I love, by the way!  I would much rather answer questions than be stared at.  Kids are much better than adults about this.)  I'm not hiding anymore, I think is my main point.  I have to live my life and deal with my trach and feeding tube and strange speech and I'm used to it.  Do I like it?  No, not particularly.  Is it better than the alternative?  Most definitely!  The only thing that matters to me is that the people I love most in the world, those little (and not so little...have you seen my daughter lately???) people who call me Mommy, they don't notice any of it anymore.  And of course, everyone else I care about, all of you, you are all cool with it too.  In fact, you really need to stop complimenting me about how good I look...it's going to my head!  Okay, all that being said, here is today's story.  It starts out nicely, but then takes a major turn.

I was out running errands this morning.  Probably more errands than I should, especially since I have plans this afternoon, but I am working frantically on getting products up on my Etsy shop (more on that later!) so I had stuff to get done.  First stop, a local dollar store.  I won't mention it (or any of the other stores I visited today) by name, but it is someplace I go frequently.  I found everything I needed and was checking out.  The cashier, a very nice young lady, asked me politely, "Did you just have surgery?" as she pointed at my trach.  I said, "No, I had surgery about 10 months ago.  But thank you for asking."  She replied, with a genuine smile on her face, "Well, I hope you are feeling good.  I'm sure it was no fun."  I left the store smiling and with a happy heart.  There are good people out there. 

Next store was uneventful.  Third store, major big box store.  I was in the middle of one aisle, trying to decide between a couple of items.  I was blocked in the middle, there was an older womanmaybe in her early 70's at one end (I'll call her Kindly Grandma, KG for short) and two younger women, I'm guessing in their early twenties (let's call them Obnoxious Women, OW1 and OW2 for short).  I hear them giggling.  The following is a word for word account of our exchange:

(all of the following occurred in not very quiet whispers)
OW1:  giggling to OW2, pointing at me, do you see her neck?  I bet she has a big hole she has to cover.  Nasty! 
OW2:  I bet she smoked a ton like that woman on t.v.  You know, the one who talked through that whole in her neck.  (one starts imitating the commercial we have all seen, putting her hand over her neck and cackling)
OW1:  now hysterical with laughter, That lady smoked herself to death.  Whatever, she (pointing at me) musta done something bad to get them to do that to her.  Probably a meth head or a crack whore, I betcha. 

(Okay, really?  What about me says meth head or crack head???  I'm about as squeaky clean as they come, except for my occasional potty mouth!)

I had been trying to ignore them, but this was going too far.  KG started toward them, looking at me and saying "I'm going to give those girls a piece of my mind." I stopped her and said, "I've got this."

OW1 and 2:  Still laughing, until they realize I am walking toward them.  Suddenly, they look as if they got caught with their hands in the cookie jar.

Me:  First of all, I'm not dead and I'm not deaf.  You are rude, disrespectful brats who have no idea what anyone else's story is and I hope your mother's would be ashamed of the way you are behaving. 

They are starting to back away, when they realize they are stuck.  My new best friend, KG, had gone around the next aisle and parked her cart behind them.  I'm guessing if I hadn't continued, she might have put them over her knee and given them what for!  Now that they were blocked in, I continued:

"I had cancer on my tongue.  No one knows why I got it, I'm just that lucky.  I've never smoked, don't drink as often as I would like to, I just got cancer.  I'm not a meth head or a crack whore.  I'm a wife and a mommy and a kindergarten teacher.  I didn't do anything to DESERVE cancer.  No one, not even you, DESERVES cancer.  I had surgery ten months ago that cut out half my tongue and then they cut out part of my arm to put my tongue back together.  It hurt.  A lot.  More than you could imagine.  Then they sliced my neck open from ear to ear, to see if there was cancer there.  There was. I spent two weeks in the hospital, I missed Christmas and New Year's and my baby's birthday because I was so sick I couldn't come home.  I couldn't talk for almost four months, I couldn't tell my kids or my husband or anyone that I loved them, nothing.  I haven't eaten solid food since December, I get all my nutrition through a tube in my stomach.  I had another surgery and then I had to do 30 radiation treatments.  Do you know how they do that, how they give you radiation on your head?  They take a mask and put it over my face and attached the mask to a table so I couldn't move.  And then they shot radiation into me and I got horrible burns all over my neck and the inside of my mouth.  Horrible, painful, disgusting burns.  They hurt so much my kids were afraid to touch me because they didn't want to hurt me.  And then I finished radiation and I got sick, so, so sick.  So sick I didn't leave my bed for ten days.  Except for the 40 times a day I hobbled to the bathroom to throw up.  And now I'm here and I'm up and I'm out and I'm doing things and errands that I would have thought nothing about will send me to bed for the rest of the day because I'm exhausted, and you are laughing at me because I have to breath through a tube in my neck?  It's called a trach and I hate it, I hate it more than you could possibly know, but it has kept me breathing for ten months.  Without it, I would probably have died.  So now, please tell me what I did to DESERVE all of that."

Let me say, I didn't yell and scream this (I don't actually have that much breath!), I was very calm. Actually, I was kind of proud of myself.  It's not really like me to do something like that, or at least, it didn't used to be.  But if I don't advocate for myself, who will?  Well, I guess KG would, but still...

So at this point, these young women are at least looking a little remorseful.  They muttered apologies without making any eye contact and started to slink away.  I had one last bit of advice for them.

"Everybody has a story.  Before you are disrespectful and hurtful and frankly, downright bitchy, keep that in mind.  Ask.  Ask what happened.  Learn other people's stories, because someday you will have one too."  I'm sure that fell on deaf ears, they were so eager to get away from the raving lunatic in aisle 10, but maybe, later today, they will think about what I said.  Maybe not, I'll never know.

KG, my new bestie gave me a hug and wished her luck.  I thanked her for being my point man.  She told me I handled myself well, she would have slapped the hell out of them.  I told her she reminded me of my grandmother, all spunk and sass.  She laughed and went on her way.  (KG...if you ever happen upon this and read it, know that I thank you from the bottom of my heart!  I appreciate what you did for me!)

So I finished up that errand and since my adrenaline was flowing, decided to make one more stop.   My local craft store, one I visit often.  I picked up what I needed, including a $10 item I was only buying because I had a 50% off coupon.  This is an important detail...that coupon is the whole reason I stopped at that store.  Finished my shopping and got in line, I was behind about four other people.  The cashier greeted each customer with a smile and a hello.  And then it was my turn.  She looked up at me with a smile on her face and as soon as she saw my trach, she looked away, no hello, smile gone.  I swiped my card so I could keep the transaction moving quickly as there was now a huge line behind me.  (I'm sweet like that!)  I held out my phone so she could scan my coupon, but she never looked up and just put the transaction through.  She started to hand me my receipt and I said "You didn't scan my coupon."  I was still holding out my phone.  She looks horrified that she has to talk to me.  "Well, it's already done."  Really, seriously???  I said, "well, the whole point was to use the coupon, so you need to fix it."  She is now completely annoyed and gets on the phone to call her manager.  This is what she said to the manager, verbatim "You have to come here because I have a customer who is making me do a return and I have a huge line now because of her." OMG!!!  I cannot believe this is happening again today.  I look up at her, hugely annoyed, and catch the eye of the woman in line behind me.  I start to say I'm sorry to her, just out of courtesy, not because I did anything wrong, but she stopped me and said, "No worries.  You get her to give you that money back.  It's her fault.  I watched her the whole time and she completely ignored you."  Phew...it's not just me being sensitive!  Hopefully feeling shamed, the cashier returned my $10 item and rerang it using the coupon.  Five dollars is worth fighting for...but that obviously was not the point.  In the meantime, the manager had come to the front and started ringing people up on the next register.  My heroine, the woman behind me in line, said to the manager, "Your cashier was so rude to that customer.  She is nicer than I am.  If I was treated like that I would have left my stuff, walked out the door and never come back.  You need to train your people better or you won't have any customers left."  Both the cashier and I heard this exchange as she was finishing up my transaction.  She handed me my bag and in her most sarcastic, sickly sweet voice, she said "Have a nice day."  "You too, sweetie, you too."  The other customer walked out with me and patted me on the shoulder.  "Feel good and don't let the bastards get you down!" and she walked away.  Another ghoul and another superhero!

So that's it, that's my story.  I have calmed down now and should probably go back and edit what I wrote, but I feel like if I do, I will likely water things down, and I don't want them watered.  I want everything that happened to be out there in big bold print, so other people know.  There are stupid, mean people out there, but there are also wonderful, lovely human beings who are willing to speak up on someone else's behalf.  Thank goodness for superheroes!

I Made It!

Well, I made it, it's finally here, my first real milestone.  Today marks 12 weeks post radiation.  12 of the hardest weeks of my life. Seems like a lifetime ago that I had my first fitting for that damn mask, and now, it is three months behind me.  Three months from radiation, ten months from diagnosis. 

Why is twelve weeks so significant?  This is the way I understand it...if the science behind this isn't correct...feel free to correct me!  So after you finish radiation, you aren't really done with it.  It continues to add up in your system, peaking at about two to three weeks, then gradually starts to decrease.  By twelve weeks, there should only be a very minimal amount left.  I have this visual image of a blobby monster (not surprisingly, sort of a mucus monster!) that was born the first day I started radiation.  This radiation monster grew and grew and grew until it had completely taken over my life.  It was sitting on me, taunting me, 24/7.  It has slowly been shrinking, but still pops up big every once in a while, just to remind me it is still there.  As if I could forget.  I finally feel like this monster is, well, not gone, but definitely not in control anymore.  I will never be rid of the radiation monster.  There are proven radiation side effects that will continue to dog me the rest of my life.  Talk about a double edged sword...on one edge, the radiation made it possible for me to survive this cancer, on the other, it could possibly bring me a whole host of other health problems in the next year, five years, even ten or more years in the future. 

So today, I am celebrating.  It is a quiet victory, a personal milestone marked on my calendar, a birthday of sorts.  The big celebrations are coming...I am scheduled for a PET scan and a CAT scan in the next two weeks.  Honestly, I'm a little nervous.  My doctor can't say that he is 100% certain that there is nothing there until he sees the scans, but he is cautiously optimistic that all will be good.  I am too, I really think that the scans will be clear, but there is that lingering, nagging what-if hanging around.  I feel like I can't really start breathing until I get that thumbs up that I am completely cancer free.    I promise, as soon as I know something, I will post it here.  Good news travels fast!

Before I can share that news, I do have some other news to share.  Many of you know that since I started feeling better, I have been pretty bored around the house.  I have always been creative and crafty and love to have projects to work on.  Taking all that into account, I decided to combine my free time with my creativity and open a shop on Etsy.  It will allow me to be creative all day long, at my own pace, with the chance to rest if I need to as I continue to build my strength. 

I made this decision about a week ago and started talking to Steve about it.  Have I mentioned how amazing my husband is lately?  He is completely supportive of this new endeavor and as he has owned his own small business, he has been an amazing resource.  The week has been a blur...I made the decision, started doing research, filed all the paperwork and got all my licenses and permits (wow, so grown up that sounds!) and have been busy creating samples to put up on my storefront.  My craft room looks like a glitter bomb threw up in there!   The store isn't live yet, but I will be sure to let you know when it is...won't be long! 

I thought long and hard about what to call my store...and finally decided that I am too emotionally attached to Sparkles and Spitballs to let it go.  So, that is what it will be.  This blog will continue to be a source of news updates and information, hopefully moving away from all cancer all the time and more about life post cancer, but I will also include updates from Etsy.  I'm looking forward to this new adventure.  I have felt better the last few days than I have in ten months.  It is uplifting to have a purpose and a reason to get out of bed.

Time to finish up for now...I need to go make something sparkle!  Thank you for continuing with me on this journey...it has been a long, very bumpy road, but hopefully soon it will be a smooth and comfortable ride.

Love and sparkles to you all,
Gayle

Playing the what-if game

I'm not sure how it is that I let weeks go by without writing here.  Every time I sit down at the computer to write, I reread what I wrote the last time, just so I don't bore you all by repeating myself over and over again.  But when I do that, it makes me so aware of all that has happened in the time in between.  Here's a quick recap and then I will get into the nitty gritty of this post.

Since my last post:

• all my colleagues went back to work...and the school still functions without me;
• big kids started school and for the first time in their lives, I was able to take them to school the first day;
• little one had two weeks at home as an only child by day, youngest by night;
• big kid Back to School Night;
• I had my swallow study (much more on this later in the post);
• I finally got my sh** together and put together my calendar for the year;
• dance studio released the new schedule and after a zillion or so text messages, worked out a schedule the girl is pleased with;
• Bat Mitzvah planning kicked into high gear (yes, already, even though it is a year away) with the signing of vendor contracts;
• missed a big family function because my doctor didn't think it was a good idea, but sent the girl with her grandparents and am thrilled with how close she is to her cousins;
• swear the girl grew another foot;
• I climbed in the way back machine and had a wonderful visit with a friend who has known me forever;
• exhausted mother-in-law returned home after chasing the youngest around for two weeks (Thanks Emily!);
• littlest finally went back to school (more on this too, I think!);
• dance classes actually finally start and all is right in the girl's world;
• I am back to being a stay-at-home, alone-in-the-house, keeping-myself-busy kind of mom.

That's the update from Lipson Land, now I can get down to the real business at hand.  In truth, I have been avoiding this post for almost a week.  I had to have a mini-meltdown and have a hard talk with myself before I could sit down to write this.  I realized that I sometimes delude myself into thinking one thing and then have a difficult time accepting the reality of a situation.  Maybe that's called coping, I don't know, but I do know that once I write it here, the reality is out there and I have to deal with it.   I'm probably building all this up to a great big mountain, when it is potentially just a molehill to be stepped over, but time will tell.

So here's what is going on.  Last Friday, I had my swallow study.  For those of you who don't know what it is (I certainly didn't!), you are really missing out on a good time. The swallow study was done to determine whether I am having any difficulty with swallowing and if so, what those difficulties might be.  It involved an x-ray tech, a radiologist, and a speech therapist who specializes in swallow issues.  Never had an x-ray with an audience before!  So first there was a chest x-ray and then they seated me sideways in front of the machine so they could do a video x-ray (who knew those even existed???) of me swallowing.  I started with straight up barium thinned with a little water.  Yum.  Swallowed small spoonfuls of that delightful concoction and then worked my way up to something even more appetizing.  Applesauce mixed with barium.  Yep, it really is as disgusting as it sounds.  Maybe more so.  I am so thankful that my taste buds are beginning to come back, but it seems a little twisted that they start to function just as I have to do this test!   There are more steps after that, but I didn't get there, as I had a hard time with the applesauce.  After the applesauce made me gag (really?  Who wouldn't?) the therapist put the brakes on.  She showed me the video of me swallowing which was really quite fascinating and even with my untrained eye, I could see where the problems were.

I do okay, not great, with water and other drinks of that consistency, but when I moved to the thickened applesauce, it was too much work to get my airway completely closed to avoid food going down the wrong pipe.  We have all done it, swallowed something the wrong way, which I suppose is fine once in a while, but the risk of having it happen all the time is not something to mess around with.  So basically what the therapist told me is that I am not ready to eat yet.  Well, not eat what I want.  I can start working up to real eating with soups (thank you triple-digit weather, your timing is perfect!) and puddings, thinned out mashed potatoes, ice cream, etc.  Not horrible, but not what I was wanting to hear.  Worse than that...I have to repeat the whole process in six weeks.  Barium for breakfast, not my idea of a good time.

I've taken a long time getting there, but here is where my mountain vs. molehill issue popped up.  In reality, I know exactly how hard it is for me to swallow things.  I just didn't want to admit it.  In my fantasy life, I was going to go to this swallow study appointment and just kill it.  I would come home and start whipping up meals for my family and actually sit down and eat with them at the table.  Eating would be easy and I could begin to put this whole ordeal behind me. 

The therapists words and prescription blew that whole fantasy out of the water and brought my reality crashing down on me.  I was not ready to eat anything.  When I first got home that afternoon, I tried to blow it off like it was no big deal.  I immediately got on Pinterest and started pinning new soup recipes, trying to decide which one to make first.  I looked up puddings and custards and mashed and whipped potatoes and sauces and gravies.  And then the elephant in the room filled it's trunk with water and gave me a good dousing.  I wasn't ready to leave all this behind, I was still stuck smack dab in the middle.  I have this picture in my head of me in a giant maze and I've been wandering through it for months, just trying to find the exit.  I thought when I turned this corner, the exit would be right in front of me, but instead I hit another brick wall and once again, I have to turn back around.   By the time we got the kids in bed that night, I was a mess. 

Just like that, the what-ifs started.  I am really, really good at the what-if game.  What if I never get my swallow back?  What if I can never eat again?  What if the swelling around my vocal cords is permanent, what if the trach is permanent?  What if I can't go back to the classroom, back to teaching?  What if I never, ever, ever get my old life back?   I got in the shower and just sobbed.  And then I got mad.  And then I sobbed some more because I felt sorry for myself.  Why me?  When do I get a break?  When is something going to go right for me?  Pity party, table for one, no reservations required.  All of this because of one day, one test, not even the big test, that one is coming later in September.  Once I let it all out, I was feeling a little bit better.  None of those what-ifs had been answered, but I had had a good cry and things are always better after a good cry! 

Nothing has changed since last week, except that I know I just have to keep moving forward.  Some of those what-ifs might come true.  Most, if not all, will not.  I really debated writing about all of this, about all of my fears, my what-ifs.  So many of you have commented to me that I have a great attitude, that I am so positive (thank you for the compliments!) and inspiring (again, thank you!) but I need everyone to know about the struggle to get there.  People say to me all the time, "I don't know how you do it."  Frankly, some days I don't.  I have my ups and downs, my turn at the pity party.  I don't think I would be human if I didn't.  I have days that I really don't get out of bed, but then I have days where I can't sit still.  Days where I just want to hide from the world.  I get frustrated at my situation, at my body, at life in general.  I am so impatient (oh...did I mention that the speech therapist told me I just needed to be patient?  Just be patient...now my three least favorite words in the English language!) I just want to be done.  But then, I look around and I see, truly, how far I really have come in a relatively short amount of time.  I push the what-ifs to the side.  They are never gone, never really far from view, but for today at least, they aren't sitting in the middle of the road, blocking my way. 

While I was writing this, the mail came, the exterminator came to the door, dogs needed to be put away.  Texts came and were replied to, urgent emails attended to, my to-do list got longer.  Life keeps moving, and I have a choice.  I can lay in my bed and let it pass me by, or I can get back out there and be a part of it again.  What-ifs be damned...I've got things to do!

By the way, this is what came in the mail today:

Okay...there is obviously no picture here, despite my repeated efforts to place one right in this very spot.  If there were no technical difficulties, you would be looking at a stunning picture of the awesome rhinestones that arrived by carrier pigeon.  Sparkles, sparkles, sparkles!  I have craft projects coming out my ears...yay!  Maybe one day I will figure out my technical issues and be able to add more pictures...

Until then, love and sparkles to you all,
Gayle

Fighting Battles

I have been thinking a lot this week about our personal demons.  We all have them.  Alcohol, drugs, pills, food, shopping...we all have something we just can't resist.  I have a friend who is struggling right now, fighting for her life, in fact, trying not to let her demons win.  Unfortunately, I'm afraid she is losing the fight.  I have tried everything I can think of to help her, but ultimately, this is a battle she has to fight on her own.  I feel helpless, watching her world disintegrate and knowing that I can't do a single damn thing.  Her demons have beaten her down, taken away all of her self-worth, humiliated her and left her battered and bruised from the inside out. I wish she knew how important she is to so many people, how many lives she has touched and what a huge hole she will leave if she lets those demons win.  I so desperately hope she can find her fire again, her will to not just live but to live a rich and beautiful and healthy life, one filled with love and happiness, one where she keeps her demons at bay.  A life where she is appreciated and accepted with all her imperfections, not belittled and beaten down, judged and left behind.  I hope she knows that I will always be here, not just me, but an entire army of believers who know that deep down she is a fighter, and as long as she is fighting, we will fight with her.  But we can't swing the first punch or fire the first missile.  She has to do that.  I know she reads my blog, so I hope these words find her, and that she finds the strength to believe in her own strength. 

Before cancer, my personal demon was food.  For years, I have struggled with my weight and my relationship with food.  I always felt like food was the more powerful one in the relationship.  I often found myself powerless to resist.  I regularly overindulged, ate things that I shouldn't, or thought I shouldn't, "cheated" on whatever diet I was currently trying.  I obsessed about the last piece of cake in the fridge or that perfect bite of...whatever.  I went through fast food drive thrus and ate whatever would feed the demon.  I stuffed myself with food that tasted good but had less than zero nutritional value, filled with chemicals and preservatives.   I would make promises to myself and then break them the same day.  I watched the scale go up two pounds, down one, up another three.  The up was always more than the down and some days I felt as if I would never win. 

To be fair, it wasn't all bad.  I mean, a girl had to eat, right?  Food was the one thing that was a constant in my life.  It never disappointed me, it was always there when I needed it, it didn't judge me.  It was there to comfort me when my father died, eased the pain of hormone shots and failed procedures when we were trying to get pregnant, and then celebrated the births of all three children with me.  Food helped me make friends, impress people, get noticed. It was, and still is, a part of every life cycle event, holiday, get together, party, everything.   I collected recipes and cooked, tried to replicate the treats of my childhood, with varying degrees of success, fed my family well.  Food became a part of my soul, a part of my personality. 

And then, cancer came calling.  Eight months ago tomorrow, I had the surgery that would dramatically change my life...and my relationship with food.  I have had ups and downs in terms of eating.  For six weeks or so, after my second surgery, I was able to eat in limited amounts, mostly soft foods or foods I could cut into little tiny baby pieces.  But other than that brief time, my entire sustenance has been food through a tube.  My meals come in little boxes that I pour into a bag and pump into the port in my stomach.  We joke that the boxes say "New, improved taste!" as I press the buttons to start my meal.  Post radiation, I am working on swallowing.  Sips of water mostly, sometimes a smoothie, as there is still too much swelling to try real food.  And it is work.  I have to really concentrate on swallowing so I don't choke.  That makes the idea of eating a whole lot of work.

Surprisingly though, I am still obsessed with food.  I watch the Food Network religiously, still tear recipes out of magazines and pin recipes to boards on Pinterest.  I fantasize about what I am going to cook, to eat, when I am able.  I found that I am not alone.  Many of the head and neck cancer survivors that I talk to have the same obsession, and some of them have not eaten in years.

I think when food and I re-enter our relationship, there will be a new dynamic.  I will not deny myself anything, that has already been done for me, in a torturous way.  I will not feel guilty about eating, but I will appreciate the quality and value of the food.  I will savor bites and let them linger instead of wolfing them down and not even registering a flavor.  I will enjoy my relationship with food again, but I will seek out foods that are healthy and disease fighting, instead of toxic.  And if I slip, that's okay, as long as I enjoyed it.  There is always another meal, another day to live, to eat. 

When I sat down to write today, I didn't think I had much to say.  Guess I was wrong.  Thanks for going on today's journey with me!

Sparkles and love to you all,
Gayle

Busy, busy day

Yesterday started early, with an 8 a.m. appointment with the speech and language pathologist. I had to chuckle a little as I typed that because in my old life, 8 a.m. was not considered early at all.  But I digress...Without getting into to many details, the appointment that ensued was both interesting and emotional.  Basically, what it boils down to is that the next several months are going to be hard work to try to get my voice and speech patterns back to close to pre-cancer levels.  If you hear me making strange sounds or chanting nonsense words or see me twisting my mouth into various shapes, please don't be concerned.  I haven't lost my mind, I'm just doing my exercises.  Well, I might have lost my mind a little bit, but not too much more than usual.  This is going to be a lengthy process without a guaranteed outcome, but I just have to work with what I've got.  I don't know if it is going to work.  I have stopped trying to predict the future because I am apparently not that good at it.

After a feeding and brief rest, it was time to go see my radiation oncologist.  Many of you drove me to radiation and know that I had to go about 40 minutes from home for treatment because that was the closest Radiation Center.  Fast forward to one week ago and Kaiser opened a new radiation facility just ten minutes from my house.  Sigh.  Oh well, I'm certainly not volunteering to go through that again.  The good news is that I get to do all my follow ups at this closer site, as my doctor has moved down here.  The new building is absolutely spectacular, with brand new equipment and beautiful rooms.  I didn't see the radiation rooms but I'm sure they are nice.

My RO is lovely and patient and answered all of my questions, even the ones that were seemingly random. (And the answer is, yes, even though my PET scan will be from my head to mid-thigh, I do still need to get a mammogram.  But it can wait until I am feeling better.)  Then came time for the scope, my favorite part.  If you have never been scoped before, well, let me tell you, you are missing a good time.  First you get to inhale lidocaine to numb your nose and throat.  When you are good and numb, the doc threads a long, thin camera up your nose and down your throat as you breathe in to help it move.  It doesn't hurt, but it really isn't comfortable...I swear it felt like she was trying to get that camera down to my stomach.  But no, she stopped at my vocal cords, which were now projected on a huge monitor.  Even I could see that they were still swollen, with my vast understanding of physiology.  (Guess I should have paid more attention in that class in high school!)  She concurred with my surgeon that the trach needs to stay in.  Fine, whatever.

After removing the scope carefully, she congratulated me on finishing my treatment.  She told me something that I had heard before, but needed to hear again.  Sometimes I feel like I make a bigger deal about how I am feeling than I probably should or push myself because I should be feeling better because I'm done.  She explained that I just went through the hardest cancer treatment there is. The hardest.  Some of her patients don't make it through, they give up in the middle and search for other solutions.  It was sort of like a pat on the back, an atta girl moment for me. And she reminded me that I am still going through it.  While my last radiation treatment is now almost seven weeks behind me, I still have at least five more weeks on this roller coaster ride.  It is so hard to feel horrible, then feel better, and better still, and then feel really pretty awful again.  I feel like I have had so many ups and downs the last seven weeks, I'm not really sure which way is up.  Some of you know that I am currently fighting an infection in my mouth, which is caused directly by the radiation, as it changes the pH in my mouth.  I went from being up and around and active, to back in bed and on pain medications, not sleeping because of the pain, feeling a little defeated.  No one can tell me how long it will take to beat this infection, I'm hoping not much longer.  I very much like being on the top of the hill of this roller coaster, instead of down in the valleys.  Waiting for the car to pull into the station, because I am ready to get off this ride.

So, the plan going forward is this...I will have a CT and PET scan in September, see my surgeon in October (and be scoped), see my radiation oncologist in December (and be scoped), and then will continue to see one or the other of them (and be scoped!) every two months.  Assuming I have no evidence of disease (NED...apparently cured is not a word we use) after my scans, I will have another scan in a year, to compare to the baseline.  At two years NED, I will be considered to have a much lower risk of recurrence. 

Well, enough of this for now...it's pain pill time.  Sigh.  Hoping to be in a better mood the next time I post...thanks for sticking with me on this rollercoaster.

Sparkles and love to you all,
Gayle