Livestrong Day - October 2, 2010

October 2nd is Livestrong Day. It is the day that Lance Armstrong found out he had cancer. Lance has become such a strong advocate for cancer and he has chosen this day to ask everyone around the world to wear yellow for cancer awareness. Unfortunately I have no yellow except for a fleece jacket... :( Considering it is meant to be in the 90's today, that is not possible. So I will post this on my blog and my FB and wear my yellow wristband that I wear every day! Lance is a true inspiration for everyone who has, had, is a loved one of someone with cancer and all of those that could be diagnosed (so EVERYONE)! Please support him and his cause. I know cancer forever changed his life as it has mine, for better and for worse.

My Livestrong Day is February 26th...

It's Official! (meant to post back in August...)

Had my PET/CT scan done on Wednesday, August 4th. I have been patiently waiting for my results from my doctors since then. I called yesterday and got put on hold for about 15 minutes and then decided to hang up and call back only to get the voicemail :P My oncologist, Dr. Hunter, did end up leaving me a voicemail last night around 7:30pm and his exact words were "I have your results here and it looks really pretty good". All I could think was "What the HELL does that mean???" Needless to say, as soon as 9:00am hit this morning I was on the phone to his office. I left my number with the receptionist and she said she would have him call me. I just heard from him and I am all clear!!!! There is still some inflammation showing in the back of my tongue but he said that is normal to see after the treatment I have been through. And not to mention that I was diagnosed with an infection in my mouth and tongue later that same day after my scan. So, it all makes sense. Now I will just be monitored by seeing my doctor's every month and they will set up routine CT scans to keep an eye on things. I am so happy to be cancer free!!! Here's to staying that way for FOREVER! Thank you to all of my friends and family who have all been there helping me when I am up and when I am down. It is a bit of a roller coaster ride going through this and I appreciate everyone's help and support, ESPECIALLY my unbelievably wonderful, patient husband. I never would have made it through without him and Ian. They are my rocks and the loves of my life.

GRILLED CHEESE!!!!!

So I just went to my work cafe to see if there was anything I could possibly eat there. I decided on a grilled cheese since it is the cheapest thing on the menu and some milk. I got the milk just in case I couldn't eat the grilled cheese, then I could have my Carnation instant breakfast :P Well...not only did I EAT the grilled cheese, I am NOT in pain!!!! Seriously the BEST grilled cheese I have ever had in my life! I was dancing in my chair as I ate and yelled at everyone who passed by me "I'm eating a grilled cheese!". It's been about 5 months since I have eaten anything of substance so this was very welcome and highly anticipated for a LOOOOOOOOOOONG time. I called my wonderful hubby and he didn't answer, so I sent him a text to call me with a smiley face and, of course, he thought something horrible had happened. But he was still very excited for me along with everyone else I yelled at ;) My good friend and co-worker, Carla, was here to witness it with me. We made it through without crying too. I was just too happy to cry! :)

Ahhhhh...grilled cheese...I love you ;)

Still almost non-existent tastebuds... :(

While I am healing a bit more and more everyday, my taste buds are being very slow in coming back altogether. I can taste things (mostly sweet, and usually chocolate) the first couple bites and then it goes flat. But I find if I wait long enough between bites and have a couple sips of water, I can taste it again. I am eating more but not necessarily enjoying much. I really can't wait to taste everything and taste it as it should taste. I tried a co-worker's dessert today and it tasted like meatloaf of all things. I actually had Rachel Greene's Thanksgiving dessert from "Friends" ;) hehe At least that is what it tasted like to me. So weird. Not sure why things wouldn't taste like they should but hopefully that doesn't stick. I also tried banana bread with a bunch of butter on it to make it super soft and the butter tasted like soy sauce. So, yeah, not sure what is going on the last couple days...But I have to keep trying stuff because I never know.

I did have a CT scan last week and they are comparing it to my first one when I had the tumor in my neck. Then I will see the ENT oncologist on June 29th and he will look at it to determine the results. My radiation oncologist seemed to think that maybe there might still be a bit left over that may need to be surgically removed. It will be up to Dr. Hunter to decide at the end of the month though. So, I will let everyone know then... 50% of the time, if something is left over, it is dead and not cancerous still. So keep your fingers crossed.

I will have my PET/CT scan scheduled for around the end of July/beginning of August. This test will determine if there are any tumors left or if the cancer is gone. They have to wait at least 12 weeks after treatment ends or the test can show false positives. So a lot is just hurry up and wait, I am finding... A real test in patience. I am ready to move on. I know this will always be a part of me but I am ready to eat and enjoy, feel good, and move on and enjoy the summer. I have a lot to look forward to and wonderful family and friends to enjoy time with. Let's get this show on the road!! :)

Some Photos that I didn't get a chance to post yet... :)

Me and Carla - Last Day of chemo - 4/21/2010

Me, Daren, and my sparkling cider to celebrate my last chemo treatment. I wasn't feeling like celebrating though... :P

This was the burns on my neck the last day of radiation treatment - 4/27/2010

I just rang the bell to celebrate my last radiation treatment. Again, I was really not feeling like celebrating :P I felt so horrible...but I managed a smile anyway

This is probably a week after treatment ended. I am using Aquafor to help with the burns and it is working!

This is probably before the above photo I think. I can't remember :P

The picture on top is my chemo nurse that checked me in every week and the picture under is my chemo doctor, Dr. Gregg. This was at my follow-up visit on 5/26/2010. I'm at my goal weight!! Not the way I wanted to do it or recommend but I'm there ;) And have new hair :)

2 week follow up

Saw the doctor today for my 2 week follow up after treatment. Seems as if the tumors are gone in my neck and tongue! I am still in need of a lot of healing in my mouth and throat but she did as thorough an exam as possible. I go in on June 2nd for a CT scan and more thorough exam of the area and hopefully those come back just as good :) She was impressed with my improvement since my last treatment. I actually gained a pound, so that is good. Now I just have to keep that up and try to get as much nutrition as possible. Really hard when you can't taste anything and my mouth is still sore. But I did attempt some vanilla yogurt today and that wasn't great but it was different than just a shake ;) It's hard to not be impatient but I just have to think every day that I am closer to normal than the day before :) And it did take them 6 weeks to do this to me so I need at least that to recover. I am actually looking forward to going back to work on the 24th. I won't be able to talk as much as normal, but it will be good to have my days productive and not sitting around waiting for these damn tastebuds to come back ;) And I miss my friends there. It will be good to be around all those crazy people again! The best crazy people ever!

I know...

I know, it's been over a month since I have posted anything... It's been a rough month. I will admit, and I have been a bit depressed. So I didn't feel like sharing my experience anymore. I am completely done with treatment though. My last radiation was on Tuesday, April 27th. It was a day to celebrate for sure and I rang the bell to signify my last treatment. But I really didn't feel like celebrating. I felt horrible. My neck was burned and cracking and peeling. I felt so weak that I could barely walk on my own and I felt so sick. I couldn't get the calories that I needed and what I did get, I threw up. My mouth was in so much pain and I felt like my throat was closing. I couldn't talk or swallow well. My doctor put me on a steroid to hopefully help my throat open up and get me to get more calories, otherwise I was getting a feeding tube. Which the feeding tube would be going in directly through my stomach and even though I may only need it for 3 weeks, I would have to leave it in for 3 months. And I felt horrible enough that I considered it and almost just had it done that day. But my doctor told me to try the steroid first. I agreed and thankfully I did. It has made all the difference in the world. My throat is open and I am getting 1,400 calories in a day and not throwing up! Small successes :) I still lost 20 lbs but maintaining that. I definitely don't want to lose any more. But now I am more determined than ever to just keep positive and get feeling better every day. I am pretty impatient, of course, but I think that helps with the determination. I can talk a little more every day and it is pretty strenuous for me but I am getting there. I still have to be on my pain meds and I can't taste or eat yet and lord knows, I cannot wait for that!! I am definitely ready. It's been 6 weeks since I have eaten or tasted anything. This girl is ready! It will be good to get more food in as well so that I can start working on my strength as well. I have lost all my muscle so that will be my next goal once the food comes back to work on getting my muscle back too. Keep thinking of me and sending good thoughts and prayers my way! I love you all and thank you for your never-ending support and love. I really do appreciate it and I am sorry for not updating like I should have. But I hope you understand. :)

HPV & Oral Cancer HD

Radiation moved out another day... :(

The radiation machine decided to go down for the entire day yesterday, April 15th. So, now my last treatment will not be until April 27th :( I suppose it is only one day. That damn machine better hold out for the next week and a half though! Don't want to delay it anymore ;) My mom is staying with me and Ian while Charles is in beautiful Monterery CA taking pictures for work. He calls about 15-20 times a day because he is so worried. Poor guy. I'm not really good at hiding it anymore either :P So I feel bad for that. I'm still just taking it day by day. Unfortunately the days all seem to be the same and just as rough but the important thing is that I am getting through it. Started having to use the Aloe Vera on my neck. It's not crazy sunburned but it is red and peeling. I am "so hot" :P My mom has started me watching The View, Dr Phil, and Oprah now :P Not good. All I need is more tv to watch ;) Although I keep picking up more and more Gordan Ramsay shows. Not sure why I find pleasure in my misery by watching food being eaten and  prepared, whether badly or really well done :P It doesn't make me more hungry or anything, surprisingly. I guess because I know I can't taste it right now so it is not even a temptation. If I put it in my mouth, it would just taste like a big piece of soggy napkin. Not very appetizing :P So i just sip my Slimfast and my water and enjoy Gordon giving all these knobheads a "what-for". And then showing them how it's done. That's my Gordon! ;)
The kind of funny part of how my treatment as affected me that is very different from my original personality is that I have no sympathy for dumb people. I honestly get so annoyed so quickly. I used to laugh at Sponge Bob (I know, I know) but that big spongy dufus irritates the piss out of me now. I feel a bit like Squidward and want to stick something sharp through both ears. I can't stand the silly crying fits of all the contestants on Biggest Loser. Seriously, you are all a bunch of liars and knew Drea was more competition. I want to claw Brent and Caite's eyes out on the Amazing Race for being stupid and thinking that it's totally cool to refer to Brandy and Carol as "The Lesbians" because they were "mean to her". Seriously Caite, karma's a bitch and she is out to get you. (at least I am crossing my fingers) Anywho, this is just a couple little tidbits of my day that I actually kind of start laughing at myself when I notice how irritated I am getting. Anyway, I assume this too shall pass. Thank goodness, being mean and nasty is really not that much fun...not really... ;)

Missing person

I know it seems to many of you that I have disappeared. I'm sorry. I know it may seem unfair. I will be back, I promise. For now, I am just not myself and I can't talk. Every inch of skin in my mouth now feels like it is peeling away: tongue, cheeks, gums, throat... It hurts to cough, laugh, burp, drink, throw-up, breathe, hiccup, cry, yawn, and sneeze. Especially sneeze...oh, that brings instant tears and then it hurts to cry so then I cry more. It's a vicious cycle.... :P So, again, I am sorry if you feel like I have disappeared. I am just sparing you ;) I'm sure my mom will be in for a big surprise coming to stay for a few days in the house of "Les Miserables". She will have Ian to keep her entertained though (when we can get him off of the XBox, that is). I need to find myself a small dry erase board so that I can communicate for the next month ;) And I was just at Target this morning :P Oh well...
I have to see the speech therapist tomorrow morning too. That should be VERY interesting. I haven't been very faithful about my exercises for swallowing...oops... And now it hurts. Hopefully I can still pass (and hopefully it is covered by insurance. I was meant to call on that and never got around to it. Now it is impossible :P) If she even shows me a graham cracker, I may just have to kill her ;)
Well, I can't wait to see my friends again soon. And I will see you again. I promise to come back healthy and laughing once again. Mwah!