Wednesday, September 30, 2015

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!

Friday, September 18, 2015

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


Thursday, September 10, 2015

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