anna's Cancer Blog
May 28, 2010
Hi All,
Well, its been one year since I ended treatment. I met with my radiation oncologist today and he was very pleased. How far can you open your mouth? Check, Taste? Somewhat unpredictable but enough that I have gained some weight. Hearing? Check, Swallow? working fine. Only having a few small problems: I am now on thyroid pills. It wasn’t good before it got radiated so now its kaput. My regular M.D. gave me too small a dose so when I started taking two pills per day (.75 mg each) I started feeling better. Had been very tired for some time but I am now bouncing back. My doctor also gave me Ambien to help sleep on days when I was tired but could not. (Why does that happen?) So, a few days ago I got up for work, fixed a cup of coffee, took my thryroid pill and fell fast asleep. It was the Ambien taken by accident. My husband tried to wake me and I felt I was awake but when I got up to get ready I kept running into things. My husband immediately called my boss and told him I was acting weird and would be late or may not come in at all. It took a few days to figure out what I had done. I have a catch 22 with the thyroid pill—It causes high colesterol – so now I am taking Crestor on top of everything else.
Second, my mouth is still very dry. The Evoxac helps slightly but lately, I have been waking up with burned tongue from it drying out in my sleep. Biotene tongue gel is good to put in before bed and allows me some sleep without disruption. I do need to get up at least twice per night and rinse out my mouth. My doctor ordered some more Caphosol but when I went to pick it up I found that it cost $200 for 4 boxes. The pharmacist said “well before that, the insurance paid $795.” That much for some water with a few additives? I just said no thank you and drove away. Today, I told my radiologist about this and he said he heard of a new trial for caphosol so that I could get it for less and signed me up. We’ll see! I’m chewing lots of gum – it works as long as I am chewing but not when I stop????? Another strange thing to deal with.
Over the last year I have discovered one more thing. I used to be a Nutrasweet junkie. Several diet drinks per day and in everything I ate. While in radiation and in the course of recovering, I was trying to keep from losing weight so I stopped diet drinks completely. Guess what? No more joint pain. When I found a few weeks ago I had gained enough weight, I went back to those old habits and the joint pain came on immediately so I stopped again and today I am sitting here pain free. Interesting?????
These days I have a very sharp pain that runs through my shoulder several times per day and the scar from the disection itches and stings alot. I guess these are minor and overall I am doing quite well. My Radiation Oncologist said he thinks my prognosis is very good. He will continue to do PET scans every six months for 5 years and then once per year afterward. My next appointment is in September.
Besides all this, I am doing better every week. So hang in there all you Head and Neckers. One year out is a good milestone!
Hugs
Anna
Hi Anna :)
Great to hear from you and I’m so happy you are doing well! I hope you life is back to normal as much as possible. I’m sure you appreciate the small things so much more now. You went through a rough time so always give yourself credit for your strength. After that you can do anything!
Heidi
Posted on Hi Anna….
I was just thinking about you earlier this week….so encouraging to read your post…...You and your family must be happy about such good results…...Continue taking care of yourself…!
Posted on Hi Anna!
I’m very happy to be reading your great news again. Thank God you are getting stronger every day and that the important milestone of a whole year has been won!
I’ll do some trials about diet drinks; I think that aspartame is not good if taken every day, but that “maltitol” is harmless; I must see to that, because I never take sugar as a sweetener.
I also feel happy to hear from you today, because it’s my birthday and your words sound like a gift to me.
I whish you health and joy, to you and your family.
With love,
Ines
I wish you
Hi Anna!
It’s so good to hear from you and I’m really happy to hear that overall you are doing well. I guess some of those lingering side effects are still with you, but I hope they will diminish with time or you can find ways to deal with them effectively. I think after treatment, we all seem to have a few issues that stay with us. With a few adjustments, most are manageable. I wish you continued good health and hope that you will come here from time to time to let us know how things are going. Take care and may God bless.
Hugs—
Martha
Posted on That is so interesting about the link to sodas and joint pain. Wonder what that is all about. Good for you. Love when I make connections like that. I was so happy and sad when I finally realized I was lactose intolerant. I love cheese but it was nice to finally know why I was getting sick. Happy Memorial Day!
Posted on Elizabeth
Posted on hey anna..
great to hear from you…and your 1 year anniversary since begin this journey..
glad to hear most things are going well….scary thing about mixing your thyroid & sleeping med…
i too found out my thyroid was effected, {ex. low energy} from the radiation treatments….needed to start medication for “hypothyroidism”...all is within normal range now…
about the nutrasweet…interesting possible correlation to experiencing pain…hope you no longer have any pain
question: do you still have any jaw pain {ex. when eating like a bagel}...i am still having this—thinking it due to stretching my jaw—maybe will be a life long issue
glad to hear from you again…my follow-up appt are this week…will send you an update to my 1 year anniversary tests…
god bless
dennismcgn
Posted on Hi Anna! It’s great to hear from you! I’m so glad to hear you are doing so well! I was wondering about the taste buds…oh well that will definitely keep me from eating to much…LOL…can’t taste it after the first few bites so why eat it! My swallowing still isn’t the greatest. I have to have water or something handy everytime I eat in case it doesn’t want to go down which is more often than not. They are keeping a watch on my thyroid too. I have a CT scan on the 8th of this month and the labwork that goes with it so I’ll see how it’s going. Wow the mixing up the pills was scarey! Please be careful! Take care of yourself and thanks for letting us know how you’re doing!
Hugs!
Trice :-)
Posted on Hi Anna, it’s so good to hear from you and that you are doing well at the 1-year mark! I am now 2 1/2 months out and am doing really well. I have the same symtoms as you: dry mouth and I also sometimes can’t sleep even when I’m very tired (will ask my RO @ Ambien, thanks!) How’s your eating? Can you eat most things now?
I’m also sorry to hear about the pain in your shoulder – ouch! I hope that it gets better with more time. Thanks so much for your post – it’s nice to hear that things will continue to improve and most of all – thank God that you are ALL CLEAR!
Hugs, Chris
Posted on Dear Anna,
Just trolling around and saw your blog. As you can see I am in AZ too. How interesting that you are in Vail..I have been there once asI travel for work. I am so happy you are doing well. I am now two years out and am doing better too. Even though we did not have the same king of cancer I am so sympathetic to your plight. I really think you guys go through worse treatment. In the hiearchy (sp?) of treatment you guys really suffer so much. It breaks my heart. No one should have to endure this disease and the specifics of each type are all horrendous but my prayers go out to you. Celebration is in order and I hope you find a great way to do this..good food should be a starting point! Blessings and best wishes for a continued healing, Lori in Phoenix
Posted on February 13, 2010
Friday I went for a barium swallow test where you drink and eat things coated with barium while they xray you and see how everything goes down. I have been having trouble with pills and sometimes with liquids coming out my nose kind of like Elena. I first took the drink which went down fine but I had little bits left in the back of my throat and would then swallow two more times for it all to go down. You could see the remaining liquid in my throat after the first swallow and the second and then the third would empty it. Next she gave me apple sauce with barium goo mixed in. Unfortunately, fruit is the only thing that tastes really creepy to me right now – mostly sour. I told her the barium tastes better than the apple sauce. Anyway, that went down fine and so did the pill they gave me. After all was done she conferred with the radiologist and then sent me to another room to talk. She said this type of test does not show everything but they noticed a mass near where my tonsils used to be. She said this could be scar tissue or something else and suggested that I get an MRI to make sure it wasn’t cancerous. I truly enjoyed telling her first, can you not see and feel all the scar tissue in my neck from the surgery and radiation and second, I just had a PET scan a week ago and am completely clear! I can imagine how petrified I would have been had I not had the PET scan done yet! Oh well, the important thing she told me is that my swallowing is absolutely normal and there was no malformation from the radiation. I have to stop eating cake, I’ve gained three pounds. Please everyone pray for our Rose that she is completely healed. Much love goes out to her.
Anna
Anna—
No, no, no! Don’t stop eating cake! Give up something else, like rutabagas or sauerkraut, but not cake! :) It sounds like you are doing great and I’m so very happy for you! Wow, barium tasting better than applesauce—I’ve never heard that one before! May all your future follow-ups be great news. I wish you all the best. Please keep us posted!
Love—
Martha
Hi Anna,
Im happy to hear the swallow test went well. Im sure what they see is the scar tissue. Im so happy the PET was clear too! See, so why do they always scare us… I almost feel like the neck dissection is the culprate with the scar tissue. I mean… I know that rads beat our throats terribly…but I never had these problems til after the ND…I know the ND had to be done without a doubt.. That removed the “C” but this scar tissue stuff is a Bitch..LOL
Stay Strong ! You are a trooper.
Love,
Elena
Posted on Anna
I agree do not stop eating Cake! and do not stop eating chocolate either! After going through all the crap that you have you need cake and chocolate!
So you got to see your skeletonn swallowing eh? That is so cool. I had the barium swallow a couple of weeks ago, ( pre- therapy appointment).
Seeing the exray of me swallowing made me laugh LOL. Anyway O hope the scar tissue disappears from your throat. Sunshine and Smiles Val
Posted on Hi Anna!
I’m so glad to hear from you and very happy to confirm that you are going quite well and always in progress.
Happily you didn’t even got scared with that unreflected comment about your throat.
My classes go on and my knees are coping with the effort; I’ll soon have an “automate” car – I mean with no clutch pedal.
In my school, sisters invited teachers so we are going to Spain this week, to visit the tomb of the founder on his two hundred birthday celebration: I’ll pray specially for Rose there.
See you soon and “Saudades” from Portugal.
Ines
Anna; I have to tell you, I have never had barium but it sounds kind of chuggish. I have trouble swallowing big pills, and my husband ends up sneezing after he swallows anything too big or his own saliva, the wrong way down. You seem to have the hang of it by now. Good one. Well, I’m sure you can afford the pounds on, so don’t give up your favourite food! That’s no fun. A bunch of us at a party last night had the best chocolate cake ever. I bought it at a special store. ummmmmm. Listen if that Pet scan showed nothing, then it has to be scar tissue. Why do these professionals take such great glee in delivering frightening news? SADISTS I say. God damned sadists. Close your ears, open your mouth and take another big piece of CAKE. That otta do it. lol.
Posted on Anna,
I am so sorry to hear about the barium tests. Thank goodness they never made me do that. I don’t think my stomach would have allowed it.
I had to give up cake too. And bread. It is still just too darn hard for me to swallow without a mouthful of milk to go with it.
I was happy to see that you are gaining weight. That should be a good sign.
But I agree with Martha… if you love cake… it’s so hard to give up favorite foods during and after radiation. You’ve got to be able to, at some point, to have your favorite foods again.
You are in my prayers and I am hoping that you have many, many better days coming.
Hugs and blessings!
Rose
Posted on Anna,
I just read some more about the scar tissue.
It really is a bitch and painful. I have so much scar tissue in my colon from endometriosis and my complete hysterectomy almost 10 years ago. The bugger is (and I’m not sure whether it’s all scar tissue) but they could remove mine through surgery… but with endometriosis… it comes back in about 4 months.
I was lucky and did not require a neck dissection and they couldn’t do the tonsil & tumor removal because of blood clots.
I pray this tissue in your neck stops giving you problems.
Many hugs and blessings,
Rose
Hi Anna, long time no hear from you, it will be 4 months may 19th since end of treatment, had my pet scan friday the 14th have to wait until tuesday for the results.. do you still take zinc.
how long has it been since you have been out of
treatment.. anything that i should know as time goes on.. just so thankful for all my friends at these blogs and hoping everying is well.
diane w from wisconsin
Thanks for your support - 
