Wine + Water

Another plus this week: When I saw Dr Avizonis yesterday and was complaining that, while I have been able to increase my food intake, I still can't drink wine, she suggested I water it down to reduce the acidity of it. So, of course, I tried it when I got home and it was successful!! It definitely won't get me drunk by any means but it is nice to feel somewhat "normal" again ;) My office Christmas party is Friday too so I am quite pleased I figured this out so I can enjoy some wine then! Need a little bit of liquid courage to get me up on the dance floor again! ;) Gotta live up to my reputation. LOL

Cheers!

"Tomorrow"

Well, "tomorrow" is only a couple weeks later. I'm improving... ;)
I saw my Radiation Oncologist, Dr. Avizonis, yesterday for my monthly check up. She checked my tongue and since it felt really good she spared me from the scope down my nose to look at the back of my tongue. I was very grateful. That is not a fun time, even if it is just for a couple minutes. Of course I would do it if I have to. Best to be safe...
I have gotten the "all clear" again from her and my ENT Oncologist, Dr Hunter. It's hard to feel excited though. Just seems that it has been one thing after the other since I found out in February. While not everything is life-threatening, it's still something I have to deal with.
I expected to be eating like a normal person by June. I'm sure my doctors warned me that it could take longer than that but I was looking on the bright side ;) But I didn't even get my tastebuds back until July 10th and then they were consistently inconsistent... Not to mention it still hurt somethin fierce to eat most things. So I drank a lot of milk. It was very soothing and "filled me up". I was so glad to be back at work but not so glad to have my cubicle outside of the breakroom. I would say it was very tortuous, and it could be, but I also knew I wouldn't be able to eat anything coming out of there. So it was a weird sort of longing but not longing :P
I ended up going to see my friend, Carly, at her work (The Health Spot) since she had started testing me on their Biomeridian machine. She said that we should test me again and she was certain they would have some nutraceuticals that would help speed my recovery up. I was all over that! It took a while but I was put on "UltraInflamX 360" which helps with inflammation which is actually a cause of terminal illness (including stress). And it was also the cause of my pain when eating. The stuff is not the most tasty of all things but it is definitely worth every nasty, gritty drop! I also do NOT recommend mixing it with soy milk, only rice milk. Soy makes it extra thick...no bueno!
I saw Carly one night and Pam (the usual biomeridian tech that has been doing it for years) stepped in and went through my testing. She was very understanding and just wanted to see me feeling and getting better. She even offered to test me for free going forward. That is such a blessing and I hope I can show her and Carly just how grateful I am to both of them. I just had a test tonight and it looks amazing. I can't believe the vast improvements in my health since my first test in March. I highly recommend to anyone and everyone. Pam is the one who informed me that my body could no longer digest dairy. I went to my regular doctor who put me through blood tests, a CT scan, as well as an endoscopy with no conclusive results. Pam tested me and knew within 5 minutes. Once I gave up the dairy I felt great. I guess I can understand where my regular doctor was coming from considering he wasn't super concerned about the lump on my neck and then it ended up being cancer... :P Lord knows I go to the doctor with any all unfamiliar symptoms now!

So, as I lay in bed last night for 5 long hours waiting to fall asleep, I thought that I should really update my blog. It's so few and far between that I am sure no one is reading this anyway but it is a good thing to help me remember. I know going through what I have gone through and the real truth behind recovery is something that I cannot find a darn thing via the internet or any other source. So maybe one day someone going through this will find my blog and can find some kind of commonality to help them. Or not. But either way. I should log on every day as I do with facebook and see where it takes me.
I had my last PET/CT scan done on the 26th of October and alas, they found a new tumor. But this time it was on the left side of my neck. Thankfully I would not face another round of chemo and radiation because that really is not something I want to do. I did, however, have to have surgery. The tumor was only about 1/3 of an inch big which is too small for a needle biopsy, so the only choice was surgery. So this was my Friday (Nov 12). My surgery was scheduled for 3:00 pm and I was due to arrive by 2:00 pm. Which I did and got lead into my room and told to remove all of my clothes (including underwear, I hate that...) and put on a disposable gown that was lined with plastic of all things. I didn't have to be hot to sweat from every pore that touched that damn plastic. It was quite yucky. The other great thing was that my surgery was delayed until 5 or 5:30. Awesome. So at 5:45 I decided to call the nurse and at 6:00 the orderly finally came and took me to Pre-op. Only one person was allowed with me in there so I was even more thankful that my mom was there to hang out with Ian while Chuck went into pre-op with me. We were there for another 45 minutes before they actually wheeled me into the operating room. It's an insane feeling being in there, placed on the operating table and then the next thing you know you are fast asleep. "5 minutes" later I was trying to wake up in recovery. Dr. Hunter let me know the good news that my tumor was benign so a neck dissection was not necessary. Of course this was all in a cloud for me. Very good news of course though. But it sure felt like he had taken an ice cream scoop to the inside of my neck from the jaw to my shoulder. Can't imagine what the dissection would have felt like :P Yikes! And, of course, that "5 minutes" for me was about 2 hours for my family. Ian was such a good sport the whole time. I know he was bored beyond anything but didn't complain once. I'm sure it was weird for him to see me there and even after. You could see the cut on my neck as they only put a piece of tape over my stitches. He is such a worry wart but he stayed strong and just kept giving me kisses to help me feel better. He is the best kid ever! They were going to have me stay over night but it was up to me and if I felt okay that I could go home. And that is all that I wanted to do. I took my pain med and ate some soup (because mind you, I was not allowed to eat or drink ANYTHING all day long...!). That stupid can of Campbell's vegetable soup was nearly the best thing I have ever ate ;) The nurse was satisfied that I was well enough to go home and we finally got out of there around 11:30 pm. I crashed as soon as I got into my bed. Of course, it was interrupted sleep having a cut on my neck. All the muscles in my neck were pretty sore so turning at all was painful. But I was glad to be home. I stayed on the couch all weekend, which was fine. I didn't want to go out in public with my franken-neck :P Also, I have no idea what kind of tape they used to keep my hair out of the way but it was a bitch to wash out of my hair. It took 3 washes to do it! I still can't get it all off of my neck and shoulder :P Eventually I suppose.
Until tomorrow...

Why so serious...? (It looks a lot like the Joker's smile...hehe)

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. :)