Yesterday I received a Joey Pump for feedings. My wife helped me hook it up last night, and I really like it over having to use the big plastic syringe to manually feed the Jevity. It ran last night and I put in the 5 cans the bag held, then this morning my wife put in the 6th can that I am supposed to get during the day. We're hoping this will help me keep my weight up. As I had lost 7 pounds last week alone. After I complete my radiation treatment this afternoon, I will only have 6 more treatments left--March 27th being the last day. Tomorrow is my last treatment of Cisplatin, and I have a follow up appointment with Dana-Farber in Boston next Wednesday March 26th. Had been getting depressed with the pain in my mouth and not being able to eat, but with the Miracle Mouthwash and Joey pump, I feel more positive about making it through the remainder of my treatment.

As you can see I tried to update my signature. Unfortunately, Dana-Farber has given me any real specific info on my stage of cancer. They believed it to be Squamous Cell, and the tumor they removed was about 9cm, and cancer was only located in 1 lymph node. The cancer was not found in my lymphatic channels, and was near any nerves-so not in my nervous system. My Dr. at Dana-Farber was very confident in having removed all the cancer during surgery, and that the radiation and chemotherapy would be extra insurance that it wouldn't reoccur. My wife and I are hoping that is the case, cause at the age of 27, I am hoping there are several more years left.

Thanks again for all your support and suggestions!

Paul

Paul,

Sounds great so keep up the good work and in no time your Tx will be history.

Paul,
When I read through your protocol, I cringed for you, as my husband has just finished one that is very similar. I would imagine you are nearly through with your by now, if not allready done. Congratualtions on making it through what I know has been them ost difficulkt time of your life. Like yoo, my husband is young. He's 36, and we, too, have a child. He is four years old. You are right. You do have everything in the world to live for,adn this battle that you are waging is purposeful and glorious in that purpose. We are lucky in that our children are so young they won't remeber this heinous period of our lives, but will benefit from the renewed outlook that the struggle against cancer has afforded us. I'm not sure my husband is seeing it that way, right about now, but I'm hoping he will in time. Please keep your head up and give yuor wife nad child a huge hug and kiss.
The world is full of love and life, and you are an important part of that.

Steph

Paul,

Hang in there. I read your post about being in "the tunnel" from 3/18 and it brought back my husband being in that same place during is treatment. It sucked, that is about all I can say. However, he actually started feeling better the last week of treatment and progressively got better over the next two months. I hope this is true in your case!

One question, when you started having pain in August, was there also a spot or sore of any kind or just the pain?

Hello Lisa,

There was also a spot on my tongue. I figured it was a canker sore at first. I tried my typical OTC but after 2 weeks nothing changed. It felt almost like I had pulled a muscle in the side of my tongue. My PCP tried me on a couple different treatments, but to no avail. So on my third visit to the PCP in October, I told him I was tired of trying his guess work, and needed to go to a specialist. Which is when they discovered the cancer with a biopsy.

Today is my 26th radiation treatment, and only have 4 more left next week. Yesterday was my 4th and last treatment of Cisplatin. Right now the toughest part of the radiation isn't the side effects of it, it is not being able to drink or eat. I miss the taste of food and drink terribly bad, I poured a small glass of some Raspberry Tea that I love to drink and smelled it for half and hour--miss it so much. I know that my tastebuds will come back over a long period of time, looking forward to just being able to drink stuff by mouth again.

Was wondering if anyone else had found some drinks they were able to get down at the end of the treatments, or shortly after the treatments were completed? Any suggestions would be greatly appreciated.

Paul

Had some more good news today on my 26 radiation treatment. I was getting threated from 3 fields, both sides and 1 from the front. Plus I was scheduled for 5 addition daily treatments of a more localized from the right and 7 from the left. Yesterday was my last of the additional from the right, and also the last of treatments from the front. So today I just had one from the left and right, and the localized from the left. Monday will be my last of the localized from the left--so for my last three treatments, I will only recive radiation from the left and right--making my time in the mask much shorter. It isn't that significant, but with the cold that I have and the phlegm I have been spitting up--less time being strapped down by my head to a table is appreciated. I can't wait for my treatments to be over so I can begin the healing process.

Thanks for all the kind words and comments, it means a great deal to me and my family!

Paul

Hi Paul! Im Lyn Im from Melbourne Australia and Im 45. My diag was very similar to yours except it hadnt spread to a lymph node so i was a bit lucky there.
I know its hard but try not to be afraid....go back and read my posts...I was TERRIFIED....the Angels on here helped me through and will do the same for you...They will help you through (and will give you the odd gentle butt kick if they see you sinking too far down into the depression pit! hahaha...btw which i deserved and was grateful for!)
I had 2/3 of the lhs of my tongue removed and reconstructed from my lh wrist (i was a singer...still am...and a pianist) as well as the old neck disection with 34 nodes removed- all clear. Then I had 6 weeks radiation.I HATED THIS...but it goes quickly.
Then, just as I was getting used to being the only patient in our house, a week after I finished radio my Husband was nearly killed in a road accident (bleeding on brain, blood clots, 5 broken ribs, punctured lung total grazes and cuts...AND IN ANOTHER STATE OF AUSTRALIA) and surprisingly although I had to fly to another state to be with him so few days out of radio with a mouth full of ulcers, it took my mind off it. I am thinking your Wife and Baby may do the same for you. Just remember they cant catch it so dont be afraid of touching you need it so do it!!
Im doing OK now and there is no sign of the cancer at this point. My red blood cells are a little low but, hey, I will drink more red wine that should fix it haha! I can talk...I can be understood and the lithsp is almost gone (ok...so I do still lithsp a bit in the morning, Jim, before the dancing troupe awakens heheh).
PAUL! Dont be afraid and PLEASE stick to THIS forum. DO NOT go searching the web for other answers...these guys here are great and they have ALL been there and THEY have their heads screwed on....with a few things added here and there to make them even smarter!!! If you are not comfy with your onco...then find one you are confy with. you HAVE to be able to understand each other. I love mine. He was so cool. You need a relaxed oncologist who wont beat around the bush. Do ALL they tell you and that includes the dietitians, the dentist, the nurses, the ENT guys and the Plastics Team and the pain team and you will get through this. You have a wonderful thing to look forward to...focus on your wife and baby and you will gain power you never knew you had. DONT think "Oh no I wont be here for them" Crap! Yes you will....thats all from me for now. Please contact me if you need to and I will cheer you up if I can. You FOUND YOUR CANCER!! Thats more than a lot of people do til its too late! Good for you!...esp from ulcers (as like me I just thought it was an ulcer...until it became a lump) AND Dont be afraid to whine, cry, whinge, sook and be a wimp here...WE ALL have been and still are at various stages...we are here to support you! I am the biggest wimp there is!!! HAHAH! we will be here for you...but I mean it...no more searching around the net for answers...it will only scare you needlessly. Remember.."one log goes out quickly but a pile of logs burns brightly and for a LOT longer" (yep I stole it...from the Bible I think, so dont go through this on your own!)
Love and Prayers from Australia
Lyn XXX - one kiss for you, one for your Wife, and one for your Baby...who with much positiveness, luck and love ..not to mention the medical geniusus we are lucky enough to have at our disposal, you will be around to see grow into a healthy teen giving you the usual headaches!

Lyn,

Thanks for the kind words and support. The toughest thing I am dealing with now is pleghm from my cold, and dry mouth is kicking it--so I spend a bunch of my day just spitting up some nasty stuff. I am taking 6 cans of Jevity 1.2 at night and during the day I usually have about 3 cans of Boost nutritional supplement. I think I have gained back between .5 and 1.5 pounds since I received the feeding pump. The toughest part is not being able to drink or eat by mouth. Have been wondering what some of the first things other survivors first started eating and drinking after they completed their radiation treatments. Thursday is my last scheduled day of radiation, and it can't come quick enough.

Thanks again for all the kind words and support. I can't thank my wife enough for all that she has done for me. I truely am blessed to have such a wonderful family!

Paul

Paul,

What works for some may not work for you and vice versa so eat and drink whatever you want. I'm sure, like most of us, you will migrate towards the liquidy soft foods for a long time and even then you will most likely have to swallow liquids with each bite. Look at the Forum re eating as there are several new posts along the same lines as what you are asking.

Final word though is don't expect too much too soon and try to eat and drink as much as you can even though nothing much will taste the same as it did before. I went 16 months post Tx with small periodic improvements until I got satisfied with my taste and dry mouth to the point that I won't care if I improve anymore despite the fact that I'm still not 100% back to normal. Also watch out for the next few weeks as they can turn out to be your worst yet especially if you don't keep up with your daily nutrition and hydration.

Hi Paul,

Some cancer centers have a bell for you to ring when you complete your treatment, even though I'm in Ohio, I will listen and surely hear your bell on Thursday! Way to Go Paul, I'm so happy for you to complete your treatment and begin your recovery, you have handled this admirably! I pray this will be behind you soon. Enjoy finding eats and drinks that work for you now, I'm sure you'll have some happy surprises, my dad did!