Untitled

I could title this post many things...Hell, My Descent Into Hell, Blessings in the Midst of Hell...

You get the idea. I'm trying to stay positive but it's so very difficult when I feel like I'm swallowing razor blades!

As soon as I got a little bit of energy back and went back to work, the pain started. And Oh. Em. Gee!  I made it to Friday thinking I could rest my throat over the weekend but after Monday and waking up constantly throughout the night I had to say, "Enough!"

I have lost my voice completely so I had my mom call the doctor to tell them I quit. Naturally, that didn't go over very well. And the cynical side of me is thinking, "Yeah, they are pissed about the money they'll lose if I don't finish."  We asked if I could take a break and heal up and they said no because radiation has a build up effect. So I said well, I hope I'm all built up because I am done. Well, then they relented a little bit. The doctor asked us to come in, get some IV fluids and discuss a few options.

They doubled my pain meds for starters but I don't know how in the world I'm supposed to function at work on this much pain med. I make enough mistakes as it is because I'm still very new at my job and the powers that be don't have a lot of patience for mistakes. I could take a leave of absence. But it would be unpaid and while it wouldn't kill me, I'd rather not unless I absolutely have to. And doubling the pain med really doesn't help much with the pain. It just knocks me out.

And all this time I had been thinking they got all the cancer that this was just a precaution in case there was something microscopic when low and behold she informs me that I have several high risk factors for the cancer to return. It had actually spread to one of the lymph nodes outside the parotid gland. That was the first time I'd heard that. So the cynical side of me is thinking, yeah, right, you're making this up. Why haven't I heard it before?

She told me,  "I know you're tying to keep working and all but I'm trying to keep you around for your kids and future grandkids. I would not push for this treatment if it were not absolutely necessary."

So then she suggests that I get the feeding tube because if I have some nutrition going in, I'll feel much better and be able to fight off the pain or at least tolerate it. And after I get the tube in, I'm going to resume radiation at a lower dose because I've lost so much weight.  So I'm going in tomorrow for the feeding tube and will probably have to stay overnight. I am going to miss Brooke's game and I am NOT AT ALL happy about that. I may not be the best mom in the world but I haven't missed much where my kids are concerned and it's absolutely killing me to miss even ONE game of her SENIOR year.

Having a feeding tube put in, even though it's a procedure done many times a day at hospitals around the country, carries its own risks. There's always a chance of infection, them nicking something somewhere, etc. etc.

So I've faced the issue of my own mortality a lot lately. I'm not afraid of dying itself. I know where I'm going. And while there are still many things I would like to do, I did do way more than I ever thought I would so I'm okay with that. What worries me about dying is my kids, friends and family I will leave behind. I think it would shatter Kayti's and my mom's faith beyond repair. They both already struggle with those things and I am afraid they would see my death as God slapping them in the face once again.

So if I do die and they read this later, please know that God did not do this because He is mad at you, me or anybody. Maybe He decided to take away my pain and spare me from something bigger on down the road. Maybe I have fulfilled my purpose on Earth and it's just time. I don't know. None of us ever can. That's why they call it faith. Believe me when I say that I love you all so very much and have been blessed WAY beyond what I deserve. It's okay to  be mad at Him. God understands anger. That's the way He made us. But let Him also comfort you and don't turn your back on him  because I want to see you again one day. Maw Maw and I will be waiting!

And as morbid as some of you might think, I have planned out my living will and dream funeral in my head so I may as well put it in writing:

If I'm in a vegetative state, I'm not living. If there is absolutely no chance of me ever regaining use of my brain, if I'll never breathe on my own again, let me go. I don't want to starve to death but I don't want to be a burden to anyone. Find a way.

I do NOT want to be buried. Donate any and all body parts that can possibly be of use to someone else. Cremate the rest. And since it's not "legal" you'll have to sneak my ashes down to the Gulf! It's the best place on earth and I have always thought it would be neat to be a mermaid! I'd rather this be a private thing. My family, kids, their dad and just a few close friends.

But everyone else--throw a party! Eat lots and lots of great food! Drink and be merry (just don't drive home--it's not your time yet!) and dance your tails off!

If Michael is available and willing, I'd like him to sing. Sound of Silence (Simon & Garfunkel), Time of Your Life (Green Day), In My Life (Beatles). I'd also like Michele Willis to sing Place of Freedom, Flawless and Holy Spirit (you are welcome here).

I do want someone to offer some encouragement. I doubt Pastor Chris would be available but Steve Blair re-baptized me a few years ago and so has a special place in my heart even though I don't know him well. And I've always adored Michele's husband Ernie. Layne, Hamp or any of the others at Highlands are fine as is Dane Hays and Demetrius Hicks who became a good friend during LIFE a few years ago.

If the kids want to do a slide-show, that's fine. If anyone else wants to share--good, bad, or ugly--that's fine, too. You guys know I've always been an open book so go for it! I've been blessed by so many people in my life. I hope they all know how much they mean to me.  I hope my family knows how much I love them, especially my three kids. You made my life so wonderful! There are no words. I'm watching over you so make YOUR life wonderful now!

Love you all so very much!

Almost halfway

and wishing it was over already!

It's Labor Day and I have been in bed since Friday night! I can't eat anything without throwing up. I have tried everything: pudding, baked potato, mac and cheese, refried beans--it all makes me want to puke.

I hate to sound whiny but since I'm hungry and I'm whiny when I'm hungry, there ya go! I know young children, even babies and others go through much worse and my hat is off to them because I'm struggling with the idea of stopping treatment. They got it all during surgery (or so they say)--this is supposed to be in case there is something microscopic. How much torture does it take to get rid of something microscopic?

It has burnt up my throat and caused sores all over because guess what? They didn't think to ask if I had metal fillings. Duh. What person over 30 doesn't? So the radiation has been pinging off the metal and making it worse. Finally, we got that under control with some beeswax and lidocaine mouthwash but I can't taste anything and the things I can swallow feel like big lumps of snot trying to slide down my throat. I can only handle a few bites of ramen at a time. Good thing it's cheap. I don't even like the taste of tea or coke and definitely no coffee. Even powerade I can't finish.  About the only thing I can finish is water or carnation instant breakfast. And that is getting so old.

Before all this I did get to the beach for a few days with my awesome friends. I tried to eat but I couldn't taste it so I definitely didn't finish. Oh how I miss food!

I'm trying not to get dehydrated but I won't be surprised if I have to get an IV or two before it's all over with. And I cannot wait for it be all over with!

7 down...

and this is not fun!

Monday, the ex went with me.

Sometimes we are best friends. Sometimes I wish I could completely erase him from my life. This was taken during one of the moments when we (obviously) were the former. Right now, as I'm writing this, I'm feeling the latter. So maybe I best just leave it at that.

Tuesday I decided to try it alone. It really only takes 10 minutes once I'm there and coming home to coordinate rides is such a hassle. I've had many of you volunteer to go with me and I really do appreciate it. But now that I'm over the initial anxiety of it, I'm okay and it's easier for me to just go, get it over with and either go home and go to bed or go back to work.

I was not feeling the best. My throat is starting to get sore and the pain med is making me nauseous.

Wednesday was  a very rough day! I'd argued with Kayti and of course, the ex. Again, gonna leave it alone. But I'd cried most of the day, still feeling nauseous and throat still scratchy. 

For added fun, the clinic called at 6 a.m. and told me the machines were down at Acton Road and I needed to go downtown for treatment.  Since before I began treatment, I'm doing good to answer a phone at 6 a..m. let alone remember anything said during the conversation. Somehow I got the time wrong but not by much. I also did not realize the cancer center was not actually in the Kirklin Clinic downtown (it is at Acton Rd) so I was late but they were pretty gracious. I went back to work since it was the middle of the day but I did not get much done. The powers that be at work decided our department needed to be on a different floor and I found out I had an hour to get my stuff packed and moved to my new area. All the dust flying, noise, chaos, people cleaning with strong chemicals, not to mention my regular nausea...I was SICK AS A DOG! I left around 4 and went home, put on my pajamas and just vegged.  I did manage to mop, vaccuum and clean my own kitchen and get some laundry done since no one else around here seems to do it. (they say they do but not to my standards apparently) 

Feeling much better on this Friday! I got a lot more done at work than usual but still left at 3 for treatment. Kayti and I ran a few errands, got takeout and I'm home on a Friday night, in my pajamas, getting some grad school homework done. (this better pay off big soon!)  I'm not so nauseous today but NOTHING tastes right. I now know why they were telling me to eat all that tree bark and bermuda grass--I may as well be eating healthy because everything tastes like crap. I didn't even finish my Mexican takeout. And my throat is getting even more sore. I will see the doctor Monday and I will definitely be getting some mouth rinse!  

Oh yeah--haven't had any coffee all week. I have had caffeine, but just not coffee and I LOVE coffee! But I can't handle the hot right now. Everything has to be cold! Very cold!

2 down, 31 to go!

Well ,give or take. I've been approved for 42 treatments but it doesn't look like that many have been scheduled. I got my calendar of appointments yesterday at my first treatment and it looks like I'm booked every day until September 28 except for Labor Day when they are closed.

I took at ativan yesterday at 2 p.m. because the anxiety was about to kill me. I left work, went and picked up my mom and we drove over to the cancer center. They showed me where to go, where to get undressed, etc. and then I got my mouthpiece and mask and strapped down. It took about 15 minutes. My jaw was sore when I was done and the tech told me next time to try and relax my jaw more and don't bite down.

Then mom and I met with the nurse and she explained what all I might experience as far as side effects go and what they could do etc. I have been truly blessed with some sweet nurses and technicians.

Mom then drove me to Mango Tango for a smoothie and then home. I took a pain pill, laid down on the couch around 5 p.m. and knew nothing else until 8 a.m.!

I hurried and got ready for work and we had a meeting of bad news. Trying to keep an open mind so I won't share anything yet but it has not been a great day.

Then EQ, my work bff, and I left for another treatment. This time it only took 5 minutes and I did not need to speak with a nurse or anything so we left and headed to Steel City Pops for a soothing treat for my throat which is already getting really sore!

I finished the work day and here I am. At home. Bored. Depressed. Tired. The bad news is this will probably be how I am for the next six weeks. The good news is, it's only six weeks.

Woman, interrupted

I'm sitting here at 6 a.m. listening to Church of the Highlands 21 Days of prayer services online. I'm trying to let my soul find comfort in the music but I can't still my mind.  I remember back to almost a few months ago when I was told I had cancer and after the initial shock I felt this peace wash over me and then my fight instinct kicked in. I want to get those feelings back and stop being so irritated and overwhelmed but somehow I just can't get back to that place of peace no matter what I do.

I had a great weekend. Had dinner with my high school friends again and then Saturday, Jeff, Kayti and I went tubing down the Little Cahaba. Sunday I did church online, some much needed housework, a few hours at the pool and went grocery shopping.  We went and got our white-out shirts for the football game and I tried to get in bed early.

Then I go to work and hear about all the stuff we're not doing right or new client directives, etc., open the mailbox to more bills and junk, try to get home so I can cut the grass but the bottom falls out of the sky and I can do nothing but sit on the couch and get irritated all over again.  I know this is just life stuff but everything just bothers me so much more right now. It's hard to explain or put into words.

So I was supposed to have heard from oncology about a start date by Monday but the only thing I got was an appointment for a nutritionist and another for a pain management doctor--both at the end of August. So I'm thinking, okay, they're waiting until the beginning of September to start. Okay, at least I'll get in one last beach trip! Then yesterday this rude little nurse calls while I'm in a work meeting and leaves me a voice mail TELLING ME my first radiation appointment is Thursday at 11:20.

Um, no!

In the first place, they jerk me around for weeks making me wait until my fight is about gone and then drop the bomb. Then they just assume I have nothing to do and schedule it for the middle of the day? I don't think so.

So I call her and told her that's not going to happen. I work a full time job and yes, I know, this is my health we're talking about here but I have two kids still at home to feed. If I die, they'll get life insurance and can feed themselves but as long as I'm living, I have to work! I can't come in the middle of the day like that ESPECIALLY since I have to take a nerve pill prior to treatment. I'm going to have to go all the way home, pick up mom or one of the girls to go with me and then drive all the way back to Acton Road. I have to have something later--much later.

She proceeds to tell me that's the only time she has available.  Um, this lady apparently doesn't know me or know not to try and bully me or back me into a corner! So I told her just forget the whole thing, I'm not doing it and I explained all that to her again. So she says, "well I was under the impression you wanted morning."

Girl, please--11:30 is not morning on a workday! And yes I did want mornings--early early mornings so I could still go to work after. But I can't take ativan, get a treatment and still work all day. Ativan knocks me on my butt!

So she sighs and says let me see what I can do and I'll call you back. A few hours later she leaves another voicemail message--this time it's 3:05. Better but not really good enough. So I just lost it.

All my wonderful co-workers tell me I really don't have a choice and I know they're right (to a point) but I have just lost my will. I don't want to do this. I don't want my life interrupted! I don't want to inconvenience people or tell people I can't do things because I have cancer.

After finally gaining some composure back and arranging the logistics I call back. This time I get a different nurse. I guess the other one was sick of me, too. haha  I told her this time the time would be fine but we're definitely going to have to work at getting it later in the day and hopefully I'll get used to it, less anxious and maybe switch to mornings. I also asked about taking a few days off to go out of town and she said I'd have to talk to the doctor but usually they just add those treatments onto the end.

They're gonna have to. My mind is made up. People miss all the time. The clinic is going to be closed for Labor Day, the machines will be down at times. Stuff happens. Life happens. Interruptions happen.

I am still praying I'll be able to keep doing what I enjoy during this time because the hardest thing for me to take are the interruptions. But for now, I guess that's what I'll just be--a woman, interrupted.

1 month post C-word

I realize it's been awhile since my last blog. What can I say? What am I supposed to write--how irritated I am a lot of the time? I am trying to accept my new limitations but it's hard and no, knowing they're temporary doesn't make it any easier. I'm overwhelmed. I'm used to being busy but this is different. I've gotten enough of my energy back to be able to crochet some things, mow the grass, and clean the house, etc.

I get stressed out when the house isn't clean and the girls are great at doing what I ask. But what can I say? I'm super picky. But I don't want to be a bitch so I try not to nag or complain so I just say stressed. And I guess I still have fog from the anesthesia because it's hard for me to remember to take all these new vitamins throughout the day that I'm supposed to be taking. I don't get enough sleep regardless of what I do. I don't have the energy for the exercise I'm supposed to be getting. Work is kicking my butt. I'm lonely. Grad school starts back in 18 days. I don't know how I'm going to manage it all and I can't postpone it. I'm too close to being done!

I'm emotional a lot of the time--much more emotional that I normally am which may or may not be a good thing. Since my divorce, I've become a little jaded. I don't get all sappy over things that most people do. I've learned not to get attached to people easily and if someone wants out of my life, I'll hold the door open. But now it's all different. I'm not even remotely interested in dating right now, though I do have a crush or two and some good guy friends I wish I could spend more time with. But I constantly think about being alone for the rest of my life and that used to not bother me at all. I wonder if I will live to see grandchildren or even college graduations. I know I should be grateful because I know others that didn't make it to their kids high school graduations but it breaks a mama's heart to think about the possibility of missing even a moment of your children's lives.

And I think back on things in my life that I wish I'd done differently. I thought I'd mastered the art of no regrets and now regret is starting to creep back in. I just have to try harder to push it away and accept things for what they are and try to be optimistic. What choice do I have?

If that weren't enough--I still haven't started radiation treatments! I thought I would start a few weeks ago but the oncologist wanted to wait until my incision healed a little more. Although I must say it looks amazing! Have to give props to Dr. Carroll at UAB--if you didn't know it was there you'd never see it, especially with my hair down and we'll talk about my hair later.

So I went in this past Monday for what they call a simulation. They did another CT scan with dye contrast so they could decide exactly where they want to the radiation to go and I also had to have my mouthpiece which will keep my tongue out of the way so it doesn't get burned and my mask made. That was an ordeal.

It doesn't matter how much or how detailed they explain this procedure, you can't possibly psych yourself up for something like this. Especially if you're claustrophobic AND have a tiny mouth to begin with.

The mask starts out as a flat piece. They dip it in hot water and lay it over your face and it molds to a custom fit. This is so they have an exact replica of your head and can mark it up and pinpoint exactly where they want the radiation to go. So you have to close your eyes and therefore you can't see anything. But before they put the mask on, you have to get fitted for the mouthpiece that you'll have to wear. If you have ever had any kind of dental work done and had to have impressions made, it's a little like that. They stick this popsicle thing in your mouth and it molds to fit your the inside of your mouth and hold your tongue over to one side and away from radiation. 

The problem is, it's bigger than it looks in the picture. And I have a small mouth. Not only that, the side of my head has been cut and my jaw is really sore and won't open very wide at all. It's a good thing I'm not married or dating because oral would be totally out of  the question--it's that severe! 

So I'm lying there with this thing in my mouth gagging me, my eyes closed so I can't see a thing and they come at me with this mask and then they snap it to the table! It felt like I was in some twisted episode of Criminal Minds and my Special Agent Derek Morgan was nowhere around! I was freaking out!

I love my doctor. She stood there and held my hand the entire time while the technicians did their thing and everyone was telling me I was doing good but I was sure I would hyperventilate from breathing so hard and fast. My doctor decided that for treatments I would need to take an ativan prior to coming to ease my anxiety somewhat. That's great but it blows my entire plan out of the water! 

I'm going to have to do this EVERY day, Monday-Friday for six and a half weeks. I had planned to do it mornings and then go to work because my hours are really flexible and that way I can still do my job. But if I'm going to take ativan before, I won't possibly be able to work after. This means I'll have to go into work really early (haha,that'll never happen) and leave early, go get someone to drive me, take my ativan, get my treatment and go home and sleep and do nothing else! 

So I'm praying that all that was just the anxiety of the unknown and that I'll get used to it because I don't have time to be a big weinie!

And my hair--yeah, turns out I'm going to lose some of it after all and permanently. Because of where the radiation needs to go, the hairline in the back on the left side is going to move up a few inches and leave the space below slick. I'm not sure how that will end up looking. Fortunately, my hair is long and the hair above it may cover it enough so you won't be able to tell. But I'll have to wait and see. And pulling my hair up may look awkward. So there goes one of my best features maybe. And if so, I'll just shave my head and rock some bandanas!

Even knowing all this and worrying about it, I'm still anxious to get it started but I still don't have a start date. All the doctors have to review and sign off on the "plan" and I'm sure the insurance company as well, although I'm very blessed to have insurance that covers cancer 100%!

So enough of the negative, let me try to be positive for a bit. I'm super blessed! Although I have not spoken to my ex in two weeks and I'm not sure why, I know if I needed him he'd still be there. But he wants to move on with his life and I love him enough to let him try. My parents are super supportive as are my sisters and of course, my friends. I am so thankful to God for showing me who my TRUE ones are. They are the ones that aren't concerned for themselves but call to check on ME and ask how *I* am doing instead of always wanting to talk about themselves. They bring meals, gifts, and pray. They constantly offer words of encouragement. They do my toes, nails, let me raid their closets, take me out for a night of fun, help financially, text out of the blue to say "hi, thinking about you", drop in on me in the middle of the workday with a smoothie...it's all been overwhelmingly wonderful.

I try to be encouraged about the future knowing I have overcome so many things in my life that most people would slit their wrists over--bankruptcy, repossession, foreclosure, troubled teenaged child, college as a working mom, divorce, domestic violence, jail, etc. etc. etc. And I've made it through each thing and come out on top. I will beat this and come out on top, too. I just may have to whine a little first.

Meltdown!

The first of what I fear will be many meltdowns has happened. It happened last Friday when I felt so awful I took off from work. I literally had no energy at all was in so much pain. I'd promised on Wednesday that I would go and pay a bill on Friday and knew it HAD to be done. I had dinner plans with Angela that evening, the Def Leppard concert Saturday night and Kayti's birthday festivities Sunday. I did not have time for this!

I ultimately humbled myself and asked my sister for help, which she graciously did. But having to ask just sent me over the edge. I am Michelle, strong woman, single mom, independent and self sufficient--I DO NOT ASK FOR HELP! Moreover, I DO NOT CANCEL PLANS! I have a very full, active and fabulous life that I love and have worked hard for and I AM NOT GIVING IT UP. While talking to my sister, the floodgates opened for the first time when reality started to sink in.

It is what it is. There are going to be days when I just can't do it all and I'm going to have to start making some really tough choices. At least for awhile. I did manage to muster up some energy to keep my dinner plans and I got Kayti to drive me.

Then Saturday morning came and once again, I was down. I laid around all. freaking. day. I finally fell asleep and barely woke in time to get ready for the show but I was so glad I did and so glad that I got my lifelong best friend to take me!

Sunday morning, I slept in and then we took Kayti to iHop for brunch and then she and her dad went on a hike with our Church of the Highlands Hiking small group. They came home and we had my sisters and their families over for a cookout and cake.

My sleep patterns are still all messed up from the anesthesia. I am wired at night and the by the time I fall asleep, it's time to get up for work again. I managed to make it two full days at work Monday and Tuesday but last night I had another meltdown when I realized that to work, my evenings have to be lazy. No more exercise, running here and there--I just have to crash. This is one of those hard choices I was afraid of and nothing could cheer me up until I went to bed. But I still couldn't sleep and so I got on social media and found some encouraging words from friends that didn't even realize they were saying exactly what I needed to hear.

Still, this morning I was nervous all over again when it was time for my follow-up appointment to check the wound and find out the final  path report. Sitting in the exam room next to Jeff, it seemed like forever before the doctor came in and I was still sleepy so I just laid my head in my hands to rest but I remembered Jesus' prayer in the Garden of Gethsemane:

"Father, if there is any way, please take this cup from me. But your will, not mine." And that is what I prayed. If God wants me to go through this for whatever reason, I will do it. And I will do my best to bring glory to Him.

Then I got the news. Officially, yes it was what they originally thought--Adenoid Cystic Carcinoma and yes I will need radiation and close follow up for the next few years. And at once, my strong faith turned once again to fear and disappointment. I hope God will forgive me for that.

I will need to have a CT scan to confirm that it hasn't spread to the chest but the doctor doesn't think it has. He's fairly certain that it was all in my parotid gland. Inside the gland, 3/5 nodes were positive but he removed all 5 anyway. There was no cancer in any nodes outside the gland so that's a good indication that it hasn't spread. Of course, I'll know more tomorrow. And I'll begin radiation to shrink anything microscopic in a few weeks. And again, I'll have to pay close attention to my nutrition and exercise when I'm able. He said that my own immune system is going to be my best ally in helping to fight this off and so the stronger it is, the better off I'll be. And exercise always helps to make a body strong but there will be days that I simply won't have the energy because this IS a big deal and so when that happens I can't be too hard on myself. That's so much easier said than done! I don't know why but I have always put pressure on myself with all kinds of things.

The good news is the wound is healing nicely and the feeling in my left ear should return within a few weeks as well as the nerves in the left side of my lips and chin should regain function soon. The doctor also said there are no genetic markers for this type of cancer so worries for my children. It's also not been linked to any behavior or environmental causes so there's nothing that I did or anything that could have caused it. It's just one of those freak things and I'm blessed that I was persistent in getting it checked out and having it removed, even though it was thought to be benign and no rush.

I do appreciate all the prayers, texts, emails, phone calls, well wishes, meals and offers of help! I'm overwhelmed at the caring attitudes and concern from so many wonderful people! I love you all so much. I'm going to beat this!