Who has two thumbs and is STILL cancer free...?

ME!

It's been basically a year since my last post. I'm as good at blogging as I am at keeping in touch... Anywho, I had my last CT scan (well, not last EVER but the last one I had) on November 16th and results are still clear! Very good news indeed. I am quickly approaching my 2 year mark which is actually a big milestone after cancer treatment. Of course you have to wait out the 5 year mark to be "cured" but the 2 year mark is a good indicator that if it hasn't reared it's ugly head yet, chances are high you can relax more the next 3 years. You start seeing the doctors less and less and CT scans become fewer as well. I'm getting to that point that it is almost like it never happened. Which is why I am grateful I did do this blog, as little as I did it. I actually wish I would have did little posts even on those days I felt so horrible. It could've just been a picture. I'm sure that would have been worth a thousand words alone... Oh well. What I do have is priceless. Here's is to another cancer-free year! (and preferrably NOT the end of the world because that would suck...)



Happy New Year!

Here's to a fabulous year this year! I finally feel like myself again. It's been a really long, hard road but so happy to be back. I never knew recovery would take so long. I think that is what makes recovery harder to deal with and understand than getting diagnosed and going through treatment. At least you know when treatment will end. Recovery is anyone's guess. And you are constantly looking for answers from someone and/or somewhere. My doctors could only say "It takes time". Patience is quite hard to come by but is the one thing you have to rely on. I felt like the whole scenario took away my summer, which is my favorite time of year and I had high expectations that I would be "normal" by then. When I wasn't, that was really hard to come to terms with. My family suffered the most with my emotions during that time. But both Charles and Ian were so supportive and so amazing. There is a good chance I am repeating myself. Which I am totally okay with. Charles and Ian both deserve as many props as I can give them ;)

But here is a toast to the new year. May it be a very boring year for all ;)

Live long and prosper bitches!

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. :)

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!

2 weeks!

Two weeks left of treatment! It's not getting easier by any means but at least we are on the downward slope. There is a light at the end of the tunnel. :) My neck is a little red but that is about it so far. I can blow my mouth which is utterly disgusting but part of the deal (and I may add the WORST part). Hopefully that goes away in a couple weeks and my tatsebuds come back once I am all done...fingers crossed on both hands and toes crossed :P I am losing a little more hair than normal but I still have a full head of it :) I have my bad moments of self pity and defeat but my husband has been wonderful to help bring me out (or I just go to bed :P). Ian is always good to have around and he is such a sweetheart, but we all knew this. He comes and gives me hugs and tells me he loves me all the time. He'll even tuck me in on the couch when I'm laying down. I do that a lot with the fentanyl and the new nausea meds. They make me very sleepy. Well, I can't wait to be done and we are getting there. I actually miss working a little but there is no way I could do it right now. But it will be nice to get my life back on a more "normal" track again. Charles is going out of town on Wednesday to the Sea Otter Classic in Monterey, CA so my mom is coming to stay with Ian and I. Ian also has a karate tournament on Saturday, hopefully that will not be all day. Don't think I could handle that but hoping he only has to be there a couple hours in the morning. I hear that's what they usually do with the younger ones. He is just so excited that I can't not let him go :) And it will be nice to spend time with my mom :) She is such a wonderful cook, too bad I can't taste anything :( Because that would be GREAT :) Oh well. Ian can enjoy :)

No bueno

On Tuesday, my doctor put me on Fentanyl patches for the horrible pain I have in my mouth hoping to help with me eating since I keep losing weight. The fentanyl works wonders for the pain so that is GREAT! But not sure if it is the pain med or chemo but I have not been able to keep anything down for long :( This is not helping in my "weight stability" but I am so glad to have the pain gone that I don't want to give up on the fentanyl. This is saying a lot since I HATE throwing up. I mean who really loves it??? ;) But I really hate throwing up. Lord knows that I do not want to have a feeding tube so I am still trying my best to eat. Definitely not easy. I keep torturing myself and watching Gordon Ramsay every day too. I was craving a hot dog (thanks to Survivor) but now I have turned towards lasagne (thanks to Ian watching Garfield) and now onto Shepherd's Pie (thanks to Gordon). I am going to get so chubby when this is all done and I can eat again! :P Although I do wonder what my tastebuds will come back like... if they will be the same or if things will taste differently. I am 99.9% positive that I still will hate onions though ;) hehe
Just sitting her reading this post and how interesting to go from throwing up to food...hmmmm... the shit that goes on in my mind :P
Well, love to all and I will miss my Bunco girls tonight... :( Have fun anyway ladies! I'll catch ya next month!

March 31, 2010 Halfway mark for Chemo!

My best friend, Keni, came with me to my radiation and chemo appointments last Wednesday. I was able to get her to take some photos, which she was willing since my hubby wouldn't. It was a little more than Keni bargained for as well. I don't see what others see since I am the one going through it. So what may seem like no big deal to me is actually quite a lot for my loved ones to take in. You can see the pictures below of me in my mask for radiation and then another one with the machine rotating around me. As well as a pic of Keni and I at chemo and my chemo nurse, Daren, with the large nipples ;) hehe
Keni and I got to watch "Fantastic Mr Fox" (thanks Terry!) and that show was pretty entertaining. I laughed quite a bit and also dropped my full cup of ice...AGAIN! This time it was closer to my done time so I'm improving I guess you could say :P Off to my 4th chemo tomorrow with my hubby. Getting closer....!! Can't wait to be done. I'm sooooooooooooooooooooooooo hungry :P

All fitted, strapped down, and ready to go

The machine rotating around me (before treatment starts)

Me and Keni

Me and Daren throwin up the peace sign ;)

Cheeky Chipmunk

Due to my radiation in my mouth, the insides of my cheeks have swollen up and now I feel and sound like a chipmunk hoarding nuts in my cheeks ;) I have a sore on the right side and I thought it was because I had bitten it in my sleep and it just wasn't healing. Believe me, that thing hurts so bad. It is the biggest reason I can't eat. Even the ensure burns it. I talked to my doctor about it on Tuesday and we figured out that the radiation beam is actually reflecting off of my metal filling in my tooth and basically burning the inside of my cheek. The sore is actually a big blister and it is a BITCH! ;) Thankfully I have dental trays made especially for my teeth and can use these to hopefully prevent the reflection of the beam now and my cheek should be healed within a week. Fingers crossed! It still hurts today but not nearly as bad so I think it's working!! And Lortab is not too shabby itself ;) hehe

Thanks Amie, Jeff, Morgan, and Jeffrey!

My SIL Amie was so sweet to go ahead and buy me everything having to do with my Cancer awareness ribbon from Choose Hope.com! I was so excited to get the package and go through it all. I already have actually put my "Survivor" pin on my jacket! And my niece, Morgan, and nephew, Jeffrey, made me motivational pictures that I have placed next to a picture that Ian drew for me as well. Thanks so much guys for the presents! I appreciate it so much! Of course, not necessary but I am very pleased :)