I'm in love!

Is that a crazy thing for a parent to say? I'm in love with my child. I'm in love with my children. I look at them and my heart swells. I need to kiss their little dirty faces until they're smooshed. I love each of them the same and differently at the same time.

Cole is such a precocious little snuggler. He talks like it's nobody's business, has an opinion on everything (hmm, sounds a little familiar) and is not afraid to tell anybody who will listen that he is right about everything. He gives the best hugs ever! He loves art. He colors and makes pictures everyday. I swear the kid can draw better than I can, granted that doesn't set the bar very high. He never meets a stranger. I've tried to explain "stranger-danger" to him and he doesn't understand, part of me hopes he never does and he keeps the innocence. If a cute little blond boy starts chatting you up at the grocery store, chances are you've met my Cole.

Katie is such a girlie girl. She is my princess. She loves to have her hair fixed, wants make up on, loves dresses and is just so damn cute I can barely stand it. Every morning, she tells me 1 or 2. That is how she wants her hair fixed, either a ponytail/top-knot or piggy-tails. Now that her hair is getting a little longer, I'm going to try and give her more options. She is adamant about her clothing, she will not wear something she doesn't want to wear. She's not even 3 yet! Seriously! She loves showing off her earrings. There is something about the way she carries herself. I will catch myself just staring at her. She is beautiful and cute at the same time. Thank GOD she has 2 brothers. One older and one much bigger twin. Then there is always Daddy after that.

Sean, he is just the man. He is so independent and focused. He will take 2 separate toys and put them together to make a new game. He is happy to play with his brother or sister or just do his own thing. He is so sweet and loving, especially towards Katie. Cole had a hat that Katie wanted. Sean just walked over and snatched it off his head and gave it to Katie. We are trying to teach him he can't just take anything Katie wants. He is such a bruiser! He takes knocks like it's nothing. He plays hard too, he doesn't understand not everyone can take a hit like he can.

So yes, I'm in love. I feel happy and complete. I find myself grabbing a child to hug or kiss whenever my arms are empty, smelling their hair, or feeling their sweet little hands on my cheek. I'm just trying to enjoy every day that I can right now. Before I know it, I'll be hitting the preteen years and oh boy!

Not so angry anymore

Sorry I scared the hell out of a bunch of you. I leave off with how angry and filled with rage I am and then didn't blog for months. I have been reprimanded by several people. Please accept my humble apologies. Also please feel free to call me out on any typos you may find. I have the spell check turned on, but it does not seem to be working.
Let's see, since I last truly blogged a lot has happened. I am at peace with myself and the cancer. I'm trying to find all the positive in having cancer that I can. First and foremost, if someone in my house was going to have cancer, thank you God for letting it be me. I am a strong woman, but I am not strong enough to watch my children suffer. God bless all the parents who are dealing with this on a daily basis, you are at the top of my prayers. Cancer is blessing in that you find out how much you are loved as they carry you through you weakest moments.
OK, now on to the fun stuff. I just posted a quick list of funny moments in the past months. Oddly enough I wrote that months ago and forgot to publish it. Since then Katie got her ears pierced! She was sucha little champ about it too. She didn't cry or yell. She just told the lady afterward, "You hurt me" then hopped off the chair and said Sean's turn! Sean is getting much better at using his words. Sometimes he just speaks his little Sean-speak, and others it sounds like an 8 year old with perfect language skills. I just never know with him. I love when we have a conversation, I may not understand but I do. He tells me things and pauses with a sigh and checks to make sure I am looking him directly in the eye. Sometimes he'll reach up and caress me check so sweetly as he talks. He'll continue talking looking around and then cut his eyes over in the cutest little way. Some nights he'll talk to me like that for 5-10 minutes. My theory is between Katie and Cole, he can't get a word in so he saves it up for bedtime and is recounting his day to me. Cole is loving kindergarten. LOVES it. He has a girlfriend, of course. Her name is Blair with golden hair, blue eyes and she always has her hair fixed and loves to wear dresses. They are coloring buddy. A new girl started in his class and really took a liking to Cole. He said to her, I'm sorry but I already have a girlfriend. He told me at home, "I only like HOT girls, not just pretty ones!" I told Alex the story so when he got home he asked Cole about it so he could hear the story. Cole added on this time, "I only want 2 girlfriends, not too many!"

Cute and funny things over the past few months...

1. Cole had just woke up in the morning and he put on fresh underwear and shorts. I was helping him buckle his belt when he said. "Mom! I have a statue in my pants!" I realized he was talking about morning wood.
2. I stepped on my dog's tongue!!! He was licking the floor at the same time I stepped backwards. I was barefoot and it was the weirdest feeling ever. Poor Bandit.
3. As you get older, never trust a fart!
4. I was letting the twins watch the Disney Channel. Katie was watching Hannah Montana, Sean picked up the remote and handed it to me saying."'No. I pass."
5. Cole: We live in the United Steaks. If you say steak, it's what we eat. If you say United Steak, it's where we live.
6. So I was reading CNN, and saw on the right "popular on Facebook" and I thought, why do I have to be popular on FB to read those stories?
7. Sean dancing around the living room in Katie's princess heels to the song Disco Queen, that boy has got some moves!
8. Sean took a matchbox car, shoved it into my cleavage, put his hands in the air...Ta Da!
9. Katie farted on my lap, I asked her what do you say? (Expecting her to say 'cuse me) but no, my daughter says, "All mine!"
10. We learned the hard way. Do NOT watch Tosh.O when the kids are awake. We thought, oh it can't be that bad, they'll bleep anything bad. Obviously, we had not watched the show before. I grabbed both kids next to me and covered eyes and ears in a flash. We turned it off immediately and Alex and I both about had a heart attack. If you are curious, they were giving a definition of "docking". Alex and I never heard the word in this context before. He and I are so niave, we thought computer docking station. UH,NO!
11. On that note, we found a show that is funny as hell! It's called Tosh.O. I suggest DVR and waiting until all children are in bed. Wait until your teenagers are in bed too. God forbid they think of new stupid crap to do.

Why, oh Why?

I am so angry. I am filled with rage and I don't know why. I lay in bed at night trying to fall asleep, and analyize my feelings. I miss my life and yet I know it will never go back to what it was. I have to accept what my life is, now, in the present. I loved to eat, drink, make love to my husband, sleep, and take a warm cozy shower. Now, I can't enjoy any of those things and I don't know why. If I had been in a large plane crash or something I would think it is survivor's guilt. But how can I have survivor's guilt when I suffered through a cancer treatment. Millions of people go through treatment everyday. Some win their battle, and some lose. But no matter what, is a lonely battle. That is what makes it so hard, the loneliness and isolation. I fought my own battle, and for now I have won. Hopefully the war is over, and that is the end of the story. But, the injuries don't end when the war is over. The healing must begin.


But it's not that easy. We have all seen what war does to a soldier. Yes, many soldiers have lost parts of their bodies, but the worst part is what they lose in spirit and mind. So why can I not enjoy the simple things in my life anymore? I crave and yearn to be touched by my husband, but when he tries to give me a loving embrace, or show me his love physically, I just... can't return it the way I want to deep inside. I love my husband with all my heart and soul. I even have a hard time being touched by my children. The oldest is 5 and the twins are not even 3. I really just have to hold it in as much as possible to give them all the love they deserve. My dear husband has been there every step of this battle wih cancer. Yet, I had to fight it alone. As much as he wanted to do it for me, he couldn't. It is like a crazy right of passage. Something I had to myself. All he could do was love me and support me. I don't want to eat, anything. Sleep is near impossible even with prescribed sleeping aids.Why am I so angry? I have fought cancer and seem to be winning the good fight. Why am I making myself and my family miserable. I don't want to die, so why am I acting like I did? Why am I denying myself any form of pleasure. It seems to be the most basic forms of pleasure: food, sleep, love and comfort. Maybe to some of you it seems obvious, but to me, I am baffled at my reactions.

I have struggled with depression for years. Almost 20 years to be exact. I have tried many medications and therapy techniques. I had gotten pretty good at being able to obtain some semblance of a normal life. After these last 6 months, I can't find my balance anymore. I am either terribly depressed or fighting the rage inside me not to throw every item in the house against a wall. I preoccupy myself with trivial menial items like facebook or the disney channel. Anything not to face what is really going on inside my head.

I started seeing a new GP. I had one for several years, but she quit practicing a few months before my diagnosis. While I was going through chemo and radiation, it seemed too much to find a new doctor. I finally found one this week. She is great, almost too great. My happy facade didn't fool her in the least and she wants me to see a therapist. Well if a GP can see through me on our first visit, then what is a psychologist going to see?

My body is beginning to heal itself. I have a long way to go to relearn how to swallow food with out choking. Now I'm dealing with something I never expected. It is completely side swiping me. The emotional side of cancer. Unfortunately all the loved ones I have had in my life that dealt with cancer didn't win. I have no role models to look up to. Is that where the survivor's guilt comes from? And how do I get over the fear that I'm not going to choke everytime I try to swallow something? I knew I'd be left with physical scars, but no one ever mentioned the emotional scars.

At the same time you have all the intense treatment from a team of doctor's to help you fight the battle, then all of a sudden they are gone. You got picked up, taken to a crazy jungle to fight with a team. The teams wins and they say, "Good job, Congratulations! Ok we are out of here! See ya!"

You yell after them, WAIT! where am I? How do I find my way home? What do I do now? Everyone assumes you'll just pick up in your life where you left off, but you can't do that and you don't know why. Your life is forever changed.

You just Nasty!

So last week was my birthday and my best friend took me to get a pedicure. It was slow in there being the middle of the week. There was one customer in there and only 2 technicians. I have been going to that salon for 10 years and know one of the ladies is the owner. I don't get to go all the time but at least often enough so my feet don't get grody. Over 10 years, I've gotten to know the ladies. They are very sweet, do an excellent job. I've seen them pregnant and they've seen me pregnant. When I was real big and huge with the twins(and couldn't see my feet); I would walk in and they would come get me and say I was right on time for my appointment, skipping me to the front of the line. When it came to the massage part, they would spend an extra long time on me. I was so grateful. So it's easy to say, we have grown a bond.

Well, we walk in and the owner seats us right away. We have our feet soaking in the water and the owner gets started on me. I casually glance over at the other customer and she is getting her heels scrubbed. I calculate the time in my head and that usually is about 10-15 minutes until the end. Ok, not bad. She will be over to help Von in a short bit. No problem. Von and I haven't seen each other in a week, so we had a lot of catching up to do. We are engrossed in our little world, catching up when the owner says something to the other technician in Vietnamese. There were a few tense words and we could tell the technician was very irritated. The owner got to a stopping point, had me soak my feet again and started working on Von.

About that point, the technician and the other customer started exchanging words. Von and I got quiet and couldn't help but hear everything going on. The technician was pissed! I have never seen her lose her temper or even be rude to a customer in the 10 years I had been going there so it really got my attention.

She jumped out of her seat and was telling the customer, "I been scrubbing you feet for 30 minute! You just nasty! You can't come in here 1 time a year and get all that nastiness off. You need to go have that lasered. I have 2 witness, I scrub you feet for 30 minute! No more!" You must picture this with the accent too!

The customer, "Well this is not a timed service, you need to keep scrubbing until my feet are smooth like my legs. I will not pay you for poor service. This is not acceptable!"

The owner hears this and she jumps out of her seat, "You no PAY?! I call Police! You pay! You come in here 1 time a year? We no need your business you pay and never come back! I call Police!"

At this point all three ladies are pretty much repeating themselves yelling and talking over each other. The technician looks at me and says, "I have witness!" I can feel Von on my other side trying to will me to stay out of it, but these are my girls! I gotta have their back, so I nod Yes several times. I couldn't say anything, because I was afraid I'd start laughing and make matters worse.

Finally the customer says, "You need to paint my nails!" The technician says exactly what I was thinking. "Why I paint you nails, if you no pay?!" At which point the customer said she will pay if the technician would just finish and paint her nails. At this point she continues to scrub her feet, with all her might. I'm sure she wanted to hurt her or make her bleed or something. She finally gets to painting her nails. By this time the owner has finished both mine and Von's pedicures. After she left, I took a picture of the nastiness that came off her feet which was in the trash can. In the picture, you'll see a bunch of green looking snot. No, it's not snot but the skin that was only the last 5 minutes worth of scrubbing. There was plenty more beneath the pad. I can't even imagine what her feet looked like before we got there. Poor Von was about to be sick at the sight of it.

Mommy you have boobies, and I have a sword!

So Cole has noticed the difference between boys and girls. "Mommy you have boobies and I have a sword!" He wasn't talking about his penis though, he was talking about a literal Nerf sword. Only boys can play with swords, that is NOT a girl toy, duh! Of course, my mind cracked up because he put it in one sentence. I now give him 10 years and he will be dying for a girl to play with his sword.
After dinner last night he was proud of his belly and was sticking it out as far as he could. He told Katie to feel his belly, he has a baby in there. I stopped him right there, "No hun, only girls can grow babies in their tummies." I had barely finished what I was saying and knew the next line. "No Katie is not growing a baby in her belly, not until she is way, way, WAY older!"
Luckily, the door locks have been working so I am very happy to say I have less to report on. School starts next week, kindergarten! He is wanting to get his hair cut before then. So it will be Alex's job to take him this weekend and tell him he is only getting a trim not a buzz cut. He has the most beautiful hair, hair most women would kill for. Hair many men would kill for too. Cole said it makes him look like a girl, so we need to convince him how handsome it is. This picture was taken right after his last trim.

Little Stinkers!!

No this is not blood, it is lipstick. My favorite color of lipstick, so that sucks. But it really does look like she had a good time. That smile, she is saying cheese. She doesn't realize how much trouble she is in at the moment.

 

So, as if this isn't enough, the next day the two of them decide to re-decorate their room some. They got up at 7:00 am to get the materials out of the pantry. They decided to use grits and toilet paper. They poured grits all over their beds and unrolled and shredded 4 rolls of toilet paper. Luckily I caught them before they went through every roll. I made them stand with their backs against the wall while I vacuumed their beds.

 

This kept going on for days. We had to remove all furniture from their room, put a lock on their closet doors to keep them from pulling the closet shelving down. We had to remove their furniture except their beds. They were pulling all the clothes out of the shelves, and I got tired of folding their clothes everyday and putting them away. Katie has been drawing on the walls pencil, crayons, chalk anything she can get her hands on. She has been saving the markers, permanent markers for herself; drawing all over herself, her brother, and the leather furniture. It's amazing that she keeps finding them too. I think I have collected all writing utensils in the house but she has her own stash somewhere. So I've had the house on lockdown now for about 3 days without incidence, but they are smart kids. I'm sure they will come up with something new to destroy the house with soon. Something I never would have thought of either.

Spoke to soon, I have a vase full of wine corks that I have collected over the years. Sean decided to test the toaster out with the corks. I had made eggo's for breakfast and forgot to unplug the toaster. Shit!

The tube is OUT!!

Again warning for the squeamish, blada, blada, blada.... Here are the pics of the doc pulling the tube out. He told me it was going to smart a little. I was pretty nervous, wishing I would've taken that Valium to calm me down. Too late now. So here is the picture of him pulling it out...

So you see the look on my face, I hadn't even realized it was out yet. Getting a catheter removed hurt more than that. Olivia went with me to take pictures, for moral support and for the gross factor. She was disappointed that wasn't any goo hanging off the end or squirting out like a fountain or something. You'll also notice it's a better looking belly button than my real one. With my real belly button, you can see all the loose stretchy skin from the twins.

The picture above was taken at the Doctor's office, a huge hole still. So that was a Friday and Alex and I had a date night planned for a while. I hadn't been out since Alex Birthday Celebration which was like the end of May and before that was Olivia's Birthday Celebration in the beginning of April before the cancer was diagnosed. So I was real excited about this date night with Alex. He said I need to stay on a liquid diet for the next few hours, but by dinner time I can go ahead and eat and enjoy our date. By the size of the hole I couldn't imagine how this would be possible.

So by the evening it had closed down to about the size of a pin hole. We went to Firebird Grill and I had a Pina Colada, frozen drink felt good on my throat. For dinner I had surf and turf, a really nice cut of filet wrapped in bacon and shrimp grilled on a skewer with a loaded baked potato. Of course I couldn't finish it all, but took it to go. I wasn't going to let one bite go to waste. (You know, it feels very wrong talking about this great meal with the hole glaring at me as I write) It was just a perfect date.

So let's see that was almost 2 weeks ago and I took a current picture and now there is no hole what-so-ever.  The doctor said I would have a 2nd belly button forever, so this is about as good as it gets.

The Tube is coming out Tomorrow!!!!

WARNING: For the squeamish, you may want to avoid today's blog. But you and I both know that curiosity will get the better of you, so save the time debating it and just read it.

So today are before pictures in all of it's nastiness. Once it's taken out I will post some after pictures, but you'll have to wait until Saturday for that.

If you'll notice the pictures that are close to the skin, they have an ooze around it. I was convinced that meant it was infected. It took all the doctors on my team to convince me that it is normal and not infected. You'll also notice in the first two pictures how red and irritated the skin is. The third picture, you can see all the crud or gunk inside the tube. It absolutely disgusts me. I asked the doctor how to clean it out. They said something carbonated, like ginger ale or a coke, or maybe baking soda mixed with water. Tried it all, nothing worked, unless you count vomiting as working. That last picture is after I drank a milkshake, again more ooze. Everything I eat would come up the tube and I could see partially digested food in the morning.

Some times it would be really bad. I take Ambien at night to sleep, so I would take it at night long with Thorazine. Thorazine is a very strong  (and sometimes it backs into the tube and the next morning when I flush the tube, it will knock me as if I just took the medicine!)

The twins are into everything, I'll post more later...

WOULD YOU PLEASE BLOG ALREADY!!!

For those of you who Facebook, someone posted that on my wall.  There have been a lot of reasons (or as some might read, excuses) why I haven't blogged lately. One of which is I rarely get my hands on the netbook when there is quiet in the house so I can think. Right now I am actually on Alex's work computer. I probably should not be writing right now anyway, I'm just so freaking irritable. It's like someone who just slammed a 12 pack of beer, handing them the keys and telling them to drive across town.
I have been pretty irritable a lot lately, to the point I don't want to be around myself. Luckily I have an appt. with my Oncologist tomorrow. He normally draws blood to check on blood counts related to the chemotherapy. I am going to ask him to check my thyroid levels while I'm there. The cool thing about his office that is unlike any other doctor I've ever been to, is their lab is attached (yes seen that before) BUT you get the results of the blood work back in 15-20 minutes! How cool is that? So if my thyroid function comes back normal, I'm going to have him prescribe something for anger.
I saw the Radiologist last Thursday and he said I have thrush way back near the tumor (or what is left of it). He prescribed something for it and I think it almost knocked it out. My opinion is the thrush has been masking my taste buds. I can't believe how much has changed taste-wise in 1 week. It's fantastic. I'm going to see if the Oncologist can prescribe one more round to completely knock it out.
Another major change is I'm not spitting up the dead tumor anymore. It was so disgusting and nasty. Most of them were small little bits or slivers the size of a sunflower seed. One night, I woke up choking. I was coughing up part of the tumor and it was the size of my largest molar. Bleh! I am so glad that is over. I can swallow food and water now without fear of choking.
Ok, so I have completely lost my train of thought, finally called it quits and put the kids to bed.

Lots of Craziness

Chemo last round, was something else. I remember getting really nauseated and asking for something for it. Well they gave me something. Whatever it was they gave me knocked me to next Tuesday. As in I don't remember anything until Tuesday and it was Thursday that I had chemo. Unfortunately, it didn't knock me out, it just made me difficult. Poor Alex had 3 two years to take care of. He was begging me to just take an Ambien and go to sleep, get some rest. He can take care of the kids, don't worry, just rest. I was in a crazy paranoid state that I don't even know how to explain. Well now I know it isn't the narcotics that I can't stand it's actually the chemo that does it to me. Only 1 more to go and that is Tomorrow.

We have had a couple of crazy weeks. First the netbook acted up, like the V-hold on an old TV not working. Alex had just gotten it for me 6 weeks earlier. So he took it back to Target and got a new one. They gave him a little grief, but they finally exchanged it for him. That's when the cable went out for 2 days! Let's see, the cable and AC went out on the same day too. So you can imagine just how much fun we were having over here.

Then on top of it all, I picked up something. I've been running a fever, which when your receiving chemo, will send your doctors into a panic. I've had to go into the office twice to receive IV fluids. Plus a third office visit, to make sure I didn't need more fluids. They now have me on 2 different antibiotics and a mouthwash for thrush, just in case. OH! I almost forgot, my neck! It has a radiation burn. It is like a really super-bad sunburn, right at the base of my neck. It has turned like a deep magenta and is peeling. They had to give me a special creme for that too. I promise Alex has not been choking me, even if the burn marks do fit his hands. I just keep telling myself 1 chemo (tomorrow) and 9 radiations treatments left. It's the homestretch, I can do it!

Some good news to end this on, we closed on the townhouse yesterday. We only have 1 mortgage! I thought we'd never sell that place. If I knew how to do a jig, I would be doing one right now!!

Just a little Claustrophobic

How much difference a week can make. I am back on the patch, same dose as when I had freaked out. I seem to be doing better this time though. One thing, I had the radiation technicians cut eye holes in my mask. That has helped immensely! The medicine is getting into my system and I feel like I can swallow again. It still hurts, but I can do it.

Oh, I used the feeding tube! If I have it, might as well use it right? So Friday night, Alex helped me shotgun a beer through my feeding tube. Only 1 though, it went straight to my head. At least we christened it properly. I have used it for food, as intended, since then.

My hair is starting to fall out too. Not all over my head, but in the back of my head near my neck. The radiation goes all around my neck in a circle and this is completely expected. It was still weird this morning when I was washing my hair and it seemed like I had more hair in my hands than soap. I got a certificate today thanking me for my hair. Locks of Love received it; I'm so glad it is being used and not going to waste. Well I am going to take a short nap before the twins wake up. Dang! They are up. Oh well, guess I'll go to bed early. I have chemo tomorrow so it's probably a good idea any way.

I'm melting, melting!

Well both my doctors have urged me to go back on the patch. As much as I hated to do it, I broke down and put it back on. My throat feels like I'm swallowing knives and the Lortab elixir is no longer touching it. So I am back on the patch, still taking the Lortab elixir and added something called Magic Mouthwash. It is supposed to numb on contact. Between all of that I feel like it's butter knifes instead of butcher knives, so I guess that is an improvement.

It hurts to talk or swallow, so I'm drinking a lot of Ensure Plus. My taste is so off I can't even taste it. Popsicles are my friend. They feel so good. I hope the pain is due to the cancer cells dying. That is what I like to think anyway. I know it's due to the radiation and blah, blah, blah. All I can think is, "Die Bitch! DIE!!!" (The cancer, not me). I picture it as the wicked witch from The Wizard of Oz, "I'm melting, melting!"

I was talking with Alex the other night about the remote possibility this doesn't work. It's something we are both aware of, but it has to work. It will work. It IS WORKING! I just know it! I'm too much of a fighter. I'm going to kick this cancer in the butt! No way will it win.

Just wanting to say Thank You!

It's hard to believe it's been a month since my diagnosis. Each passing day has seemed like an eternity in itself. And at the same time, I blinked and a month has passed. Most of it is a blur and I'm not sure I would even have the details right. Some things I do know for sure. I know that this has been the darkest month of life. I have felt loneliness and despair like I have never felt before and I hope to never feel again. But I have also felt loved this month, like I have never felt before but will always feel.

It has been truly amazing. How do I even express, how much love I have received in prayers, and help, that much needed help. Everyone has a piece of me and are carrying me through this. You all have seen this is too much for one person to carry and have pitched in, unbelievably, without question. It is such a rare opportunity to see how much a person is loved, but I am seeing it and feeling it now. Thank you everyone.

Narcotics

I always thought I would be a fan of narcotics. If I got my hands on some good stuff, I would be a junkie. Maybe before all of this, I would have. I would've enjoyed the escape from life and could have been. Right now it feels more like it is robbing me of life. I'm here, but I'm not. I feel and I don't.

I have been on a pain patch for about 4 days, and have taken it off a few hours ago. I would rather feel the pain and be inside my head, than no pain and not know where I'm at. I am waiting for the last of it to clear my body.

Yesterday, while at radiation I almost didn't think I could make it through the session. I was strapped to the table as I always have been, but I lost my sense of time. I don't know if I laid there for 5 minutes or 30. I just had to breathe. Remember to breathe, they would let me out eventually. I'm breathing, but it's not working. Grab hold of the table, strain against the mask. I. Will. Breathe! Oh I have a tube in my mouth, breathe in and breathe out. Breathe through the tube. Deep relaxing breathes. I can do this. Finally the clicking starts. The treatment is beginning. If it starts, it must end. I'm almost through it. I can do this. Finally, they are letting me free. Free for one more day.

Narcotics are not for me.

A Help or a Hinderance?

I realize why I hate this feeding tube so damn much! It is a physical manifestation of what I am going through with the cancer treatments. It is a constant reminder that I have to fight this, this cancer inside my body. With radiation and chemo, I feel like those are the good guys. We are a team and fighting the side effects and healing me, but the tube is something... Something I endure, I feel, I have to deal with just sitting here as I type. I can't rock my babies the way I want to, I can't hold my husband the way I want to. I smell like a disgusting kitchen sink. It gets in the way of everything and it hurts.

I broke down in sobs this morning because I want to rip it out and just be over it. I know I can't, there is a really good chance that I will need this tube. This tube that I want to cut into a million pieces, may save me in a few short months. That's when I realized it's not the tube itself, it is the limitations it is putting on me. IT can't put limitations, it's just a thing. I am the one adding the limitations on. Hopefully this realization will zap it of it's power over me and I can look at it as one of the treatments that will help heal me, not hinder me. Maybe it's both and that is the best I can hope for.

I hate this Feeding Tube!!!

I made it through yesterday, somehow. Most of the day went by in a foggy, nauseated way. I don't know how much of it was real or not. I at least feel like I am in my brain today.

The feeding tube has been the biggest pain in the butt so far. Yesterday I was at the point of wanting to rip it out myself. Alex talked me off the edge and I started taking Amoxycillian. The doctor wanted me to have it on hand just in case it started to get infected. I don't know that it is infected but it feels much better after about 3 or 4 doses. I feel like I could handle the nausea better if I didn't have a physical tube actually coming through my stomach. It's just pretty disgusting all around. It makes me lose my appetite. Oh, well.

I am so grateful for all the support everyone is giving me through this. I know we are just getting started with all the treatments and needing to ask for help but I am overwhelmed by every one's generosity all ready. Yvonne heard of a website to help get people together on stuff like this to help manage all the help. So we don't have 3 dinners showing up in one night and then none for a week. Part of what is weird is my taste keep changing. I know it's due to the radiation right ON my tongue. But it's odd that it can change within an hour. Like I was drinking a fresh bottle of water, and could have sworn it was Gatorade. Yesterday, sweet tea tasted like heaven and now it is bitter. Odd.

I think I need to go back and re-read the beginning of my blog. It started out as a therapy for dealing with Amy's strokes and the possibility I could lose her. Never did I think in 2 years, that it would be flipped on me, writing as therapy of facing my own mortality. I know I'm going to beat this. I feel it all the way as deep as I can feel it. But at the same time, you can't face something like this square on if you don't face all the scary possibilities of what might come.

Oh, by the way. Did I mention I hate this feeding tube?

First round Chemo and Radiation treatment

Yesterday morning started off with the Radiation right at 8:00 am. Alex was able to come into the room while they strapped me to the table like Frankenstein's monster. After that everyone cleared the room. The door to this room is no joke either it is about 6-8 inches thick. The actual radiation is done and over with in no time.

We went over to the infusion area at the Oncologist office for the chemo next. The port, as much as I complained for not having any pain management during the procedure, it was SO worth it. Anyone who ever has to go through chemo, get the port! So first they took some blood samples and checked with labs. Whatever they were checking came back fine because they stared the prechemo fluids. They hooked the IV into the port and started with hours of fluids. I'm not sure what they gave me as prep work, but they did infuse saline for 2 hours, something to make me pee, and antibiotic, and a steroid. By that time it was about noon, and we we're finally getting to the chemo. That took maybe an hour. I felt fine through all of it so far.

After the chemo, they started the post-procedure fluids. Two more hours of saline, plus the stuff to make me pee and some other stuff, that is when I really started to feel nauseated! I just knew I was going to heave and that it would be so painful due to the feeding tube in my stomach. The nurses were Johnny-on-the-spot with the anti-nausea medication in the IV. They told Alex it would make me loopy, but I wouldn't get sick. Man were they right!!

So after we got home I went straight to bed. I woke up and realized I needed help. I has so thirsty and needed some water; I needed to pee; I couldn't figure out how to turn on the TV or find the remote; I had all these things I needed and couldn't figure out how to do.

So I decided to start with the basic, just go pee then I'll deal with the rest. So I went to the bathroom and sat down to pee. I don't know how long I sat there, but it must've been a while. I decided I knew I would be finished peeing after I had sung the alphabet song to myself twice. Yes twice. I sang it once to myself in lower case, then started to sing it to myself in upper case. Well as I was singing and got to the Upper J and I lost it. I couldn't remember what comes after J. Shit. Now, I know I am really f*cked up!!!. I've lost my J's.

I finally get myself back into my bedroom. When I look, well, Alex put 5 bottles of water on my nightstand, but I couldn't figure out how to open them. The room was dark and so I thought I would text Alex to come up, but I couldn't find my cell phone to text him. I remembered I had gum in my purse and that would get my mouth moist. I finally dug it out and but couldn't get it open. At this time I realize I am hallucinating. Seriously. It was like a scene out of "Tommy Boy" when he is in the cop car and the nitrous oxide goes off in the back. Well, I can't have the kids see me stoned out of my gourd. I hear a sound outside my door and peak out. It's Olivia. Thank GOD!!!

I whisper and pull her into my room, rambling about losing my J's. She told me the kids were down for the night, so I know I am safe to go downstairs but I was too scared to walk down the them so I scooted down on my bottom. I told Alex I think I am hallucinating because I am SOO out of it and seeing trails! He took me upstairs and helped me open the water bottles. I think I drank 3 of them down immediately. He got me some dinner, and help me get ready for bed which couldn't be easy. He was my saviour! He found the phone that he laid right at my head, so when I woke up it would be easy to find. He turned on the TV because the remote was laying down right by my phone, right by my head. As for the J's he assured me if I know my alphabet in lower case, then I know them in upper case as well.

Needless to say, Alex was a little hesitant to leave me alone today. He didn't know if I was still going to be high this morning and able to care for myself, much less the kids. So he stayed home until Olivia got out of 1st period and was able to come home and help out. So all in all, I guess it went all right.

Something new everyday

Yesterday I had a port put in. (Was it really just yesterday?) Chemotherapy ruins your veins, and as it is I only have one good vein for blood to be drawn from. My choice was a pic line in my arm or the port in my chest. If I did the pic line, I would have to tape it off every time I want to take a shower. So that made it a no brainer, I want the port! It is under the skin and I can keep it in for years. There is some maintenance with it. I'll need to go to the doctor every month and have it flushed, but that seems minor.

I had to go to CMC University to have it inserted. We had to be there at 7:00 am. Since I live on the complete opposite side of Charlotte, we left the house at 6:00 am. One of the nurses in the OR with me, got caught in traffic. She was 45 minutes late and in a crappy mood. The technician aiding the doctor was hungover from the Bon Jovi concert the night before. I really wish she would have kept that to herself, she wasn't really inspiring confidence. I didn't even meet the doctor until I was in the OR and we were about to get started. The only thing he said to me was, "What is your bra size?" I answered 36D and he told the tech, they'll need to use the longer catheter and then I was put under.

I would like to say at this point I went to sleep wondering what that was all about. But, they gave me the local shots of Lidocaine and started cutting. They had put the medicine in my IV so I would be sedated and have amnesia of the procedure, but none of it worked. The lidocaine helped so that I felt less pain, but it was still sharp and burning. My head was turned to the left and it had a sheet over it in a tent fashion, they were using my face to set their tools down. I tried to remain calm and do deep breathing to control the pain. I could feel they had gotten the port in. It reminded of a c-section where the doctor is pulling and you feel like you are going to come off the table. Well when they got the catheter into my vein it was in my heart. I could hear the heart monitor beeping like crazy. So the doctor said we are going to have to take it out.

I am freaking out at this point. My brain was racing. I need to have the chemo and I have to have this port. "Please don't take it out!" The doctor realized I was awake. I was crying my eyes out partly from the pain, and partly because I was afraid they wouldn't be able to complete it. He told the nurse I was awake and she asked how I was doing. "It hurts. I can feel everything, but I need to have this put in." After that I don't see her again. She told the doctor she is out of medicine. The doctor and technician continue. He took the lidocaine and shot the area up again 4 more times. That helped some, but every time they put the catheter into my heart, my blood pressure shot up, so they took it out 2 more times to cut the catheter shorter. They finally got it into a position that my blood pressure stayed stable and they sewed me up. I found out later, he asked my bra size because he was concerned the weight of the breast tissue would dislodge the catheter.

So now I am traumatized. Besides being told I have cancer, inoperable cancer. My next fear is having a surgery and the sedation not working, being awake and feeling it all. Part of what upset me is that, they were so cold about it. Either they didn't believe me, or they just didn't care. I was scared half to death under that sheet and the nurse could have at least reached in and held my hand and told me it would be ok. Lie to me, just try to comfort me.

The technician went out and talked to Alex. She told him they gave me enough medicine to knock me out for 2 days. Maybe they did, but I somehow didn't receive it. I don't know if there was a problem with the IV or if I have built up a tolerance to that drug. I have to get a feeding tube inserted on Monday. The feeding tube is usually an outpatient procedure, but since I have developed a tolerance to the medication, they will have to admit me to the hospital and do it under anesthesia.

So I have an MRI tomorrow, feeding tube Monday, learning all about chemo on Tuesday and a dry run on the radiation, then Wednesday is when it all starts officially, chemo and radiation together.

Great News!

I got the results from the PET scan back and the cancer is localized in my tongue and has not metastasized! When the doctor told us, I could barely pay attention to the rest of what he was saying. I am going to live, that is what I heard. I tried to process the rest of the information that he was giving me, but all I could think is I will live through this.

I start radiation and chemo soon. I am still scared half to death but I am hoping writing about it helps ease the fear of the unknown. My doctors seem very confident and competent, with good bed side manners. The nurses have been very kind and genuine. I will just put my faith in them and God to carry me through this.

The first step is tomorrow, I go into the radiation clinic to have a mask made. This mask will help the technicians line my neck up each time so the zap the right parts. After that I am off to the dentist to make sure all my teeth are in good shape. Since I'll be receiving radiation at my bottom teeth, there is a chance I could loose them later, so I need to be vigilant about their care. I will be meeting with my Oncologist on Wednesday to go over the chemotherapy schedule.

I am kind of equating all of this to a pregnancy. When you first find out you are scared to death, but know if you follow the doctors orders, you'll have a healthy little new life after all is said and down. Same here. The doctors know the steps of taking care of me. They've seen this cancer before and know how to treat it. If I listen to what they say and follow directions, there will be a new life at the other side as well, mine. I will be alive and continue on. I will look back at this and remember how scared I was, and will hopefully laugh. It's just another stepping stone in life. It's just something else that will make me stronger and hopefully compassionate and understanding as well.

It has been one week since I learned this new truth, but I can already feel how it is starting to change me. The sunshine is much brighter, my children's laughter tickles me deeper and the little things just don't bother me the way they used to. Best of all I have my best friend by my side giving me all his strength and support, cheering me on. Having Alex with me, I can endure anything.

Squamous Cell Base Tongue Carcinoma

I have cancer. I have cancer. It doesn't matter how many times I say it, it doesn't feel real. Yet at the same time, it does. I know it's true way down deep where you can't lie to yourself or hide. I woke up with that thought this morning. I am 36 years old and have never smoked or used any tobacco, ever and yet I have an oral cancer. How can this be? It's not fair, I followed the rules and still I feel like I am being punished. I have 3 children under the age of 5 who need me. They need their mother, so I am going to fight, fight with every ounce of strength in me.

It's on my tongue, at the base. They can't remove it so we will treat it with chemo and radiation. Tomorrow I have a PET scan to see if it has spread and to diagnose the stage. I know it is at least stage 2 due to it's size. It's the size of a golf ball. I had a biopsy yesterday and they were able to reduce it by a third. I won't get the results until Wednesday, which seems like an eternity from now. When I have the radiation on my tongue, I won't be able to swallow for weeks so I will have to have a feeding tube inserted into my stomach. I am so scared.

I am going to blog about what is to come, what I am going through and for my children. One day when they can read, they will know how much they were loved by me even if they can't remember me. My greatest fear is not dying, it's not being here for Alex and my kids.