Hi everyone,
This is my first post. My husband is recovering from his head and neck cancer treatment going on two weeks tom. -- he had two doeses of cisplatin and six weeks of radiation, including twice a day radiation the last two of those six weeks. His swallowing is great. The Dr. is amazed, and his neck Z(outside) is helaing nicely. We (along with our 4 year old son, Carter) are focusing on maintaining weight, and wrapping our minds around what theheck just happened to us. Craig, my husband is only 36, and is now facing what I think may be a serious depression, as he attempts to look to the future, but is filled with fears and uncertainties.

His sleep is way off, because he coughs up mucous all night and is also sweating a great deal, which necessitates his change of shirts/pants three times a night.

I have read several of the previous posts pertaining to this issue, and there is not much said in those posts that I haven't said myself over and over again to Craig in my efforts to get him focused on the joy of life, and the reason for the treatments to start with. As optimistic as I am, I am finding it very difficult to constantly battle the intermittantly apathetic/negative energy coming from him, although I know that it is absolutely normal.

I do have some questions that might help him in his understading and patience with recovery.

How long does the mucositis hang around?
Does anyone have recomendations regarding loss of appetite? It isn't even that the food tastes foul. He's just overwhelemed with the idea of eating much at all, even though the Dr. told him he could resume eating whatever he wanted ASAP.
It is as if he is frightened to move to the next stage and away from the PEG tube. Is this normal?

How can I help him help himself to see the beauty of life again?

Steph

Hi Steph - welcome to the group and our prayers are with you and your family. We also have a little boy - he'll be three soon. My husband is just getting started on this roller coaster ride or journey to hell, whichever I'm in the mood to call it from day to day :-). I don't have help on any of the questions since we aren't there yet, but I do know that my hubby finally told me I was kind of getting on his nerves being positive - sometimes we just need to realistic and talk about our fears. And I realized that with some friends of mine and one of Dan's doctors - I needed my fears validated. You guys may have already done this, but it was a mistake I made so I thought I would share. Good luck and keep posting and spend some time reading around on the site - old threads and stuff. Great info on here.

Well I certainly understand that sweating problem it was driving my husband crazy. It took about 2 1/2 weeks for that to calm down. MY CRAIG had me pushing food on him too and it just wasnt working so I left him alone. Then one saturday I was on my way out the door to get grocery's and he said I AM HUNGRY well we started with Easy Mac Cheese and I left him alone. He called 30 minutes later and said it was great. From then on he just started trying things more, some worked some didnt. Some days he wouldnt eat at all and some he ate all day. Our ENT gave my husband some mouthwash with a steroid in it and it cleared almost all of the mucous up in 24 hours.

As for the depression, I have a funny story for you when I was at the point you are now. It was a Sunday morning and I fixed Craig some oatmeal and hooked up a bag of ensure to his feeding tube (chocolate), I was standing in the kitchen next to the space heater(it wasnt even cold) wondering would he eat the oatmeal. Well all of a sudden my tshirt caught on fire and I tried to move to the sink and put it out but the flames got bigger and bigger. The water didnt help (of course I didnt think to use the sprayer). So I had to STOP DROP AND ROLL. My husband somehow heard me drop and smelled smoke and came running to my aid. He pulled off my tshirt and
PJ bottoms and I am looking at him and the ensure is flowing out of the tube onto the floor and I said why didnt you just aim that at me? He stopped the tube and took his wet close off. We were laughing and crying at the same time. He said I got a call 911 and I said dont you dare because we were a funny naked site. So off to the hospital I went and had 2nd and some 3rd degree burns. That day kinda turned things arround with his depression, maybe our story will help your husband see that anything can happen at any time and NOW is all you have.

With that said our chemo dr suggested that we start a new round of chemo for extra insurance. He now has a severe chemical burn and he is back a point zero. He has been in the hospital since monday and it is worse than anything he went thru the first 7 weeks. So everyday is different.

Cindy

Thanks, you all for responding. Michell, we've been throughthe wringer, and continue to be there in one way or another daily. But, I believe strongly that Craig can beat this cancer. I am doing everything I can to facilitate his rcovery and success. I've been juicing like crazy ever since we found out,and have invested enough money in books on the subject of cancer etc., that I feel like I could open a small library.
It is crazy how out of control the whole situation makes us feel. Heck, I guess, ultimately we are out of control over much of life. Howeve, there are some things to do that help me feel like I'm not just sitting and watching, while my loved one is in pain. The food/juice portion is one of those things. Another is that I set up a caringbridge website. That has been enormously helpful not only for me to exorcise some of my frustrations, but also for relatives and friends who want to help or keep in touch, but don't know how or are to far away or don't want to be a bother. www.caringbridge.org is the address. check it out if you haven't allready.

Cindy,
I laughed when I read your psot about the fire hazzard space heater. I, too, burned myself on a space heater once, when I was in college. I had a grid mark on my butt for like a year, as I burned it by bending over to get a sweatshirt off and leaninging into it. Anyway--- those days seem like anotherlifetime away, in the face of all of this. I'm sure you would agree.

I'm sorry to hear that your Craig is back on the chemo, and I will be keeping him in my prayers for a healthy and speedy recovery. That chemo can sure do a number on a person, no?
My Craig was felled by his second dose of it. I've never seen him so decimated. He's a trooper, though, much like your husband, and they will both pull through this. Hang in there, little missy!

My craig finaly woke up, for about 2 hours this evening, and now he's back asleep. I hope he sleeps through the night. I'm going to email his Dr. with quesitons about the steroid stuff for the mucositis. Do you know the name of it?

I am going to post this here and by itself somewhere. Maybe it has already been listed but I promise in 24 hours he was almost completely clear. benadryl/dexamethasone mixture gargle and spit 4 times aday 1 tablespoon. Glad you enjoyed my story.

I'll try it and get back to you! much thanks and keep your chin up. : )
steph.

Steph,

Hello and welcome to the site, you have certainly come to the right place for support and information. My dad, like your husband has the same diagnosis as your husband. He is currently in chemo now and will start 35 tx's of radiation in 2 weeks. His chemo regimen consists of taxol, carbo and Erbitux. The Erbitux was started because his tumor was >8.5 cm with many lymph node involvement. He now is covered with the Erbitux rash and other than a slight sore throat and trouble sleeping at night has had no other side effects so far. I have found, as well as the rest of our family will tell you that staying positive is imperative for your loved one and believe me I know how hard this can be. They initially told us that my father was terminal and had 6 mos. to live if untreated. 1-3 years with treatment and a possible radical neck. It is such a blow at first and we are still reeling, but I have learned to take this hellish ride one day at a time and try to focus on what we have now, not what we dont. A friend of our family who was also the same age of your husband and had the same diagnosis is now, who has been a survivor now for 10 years and just had twins is doing fine. He has been the biggest encouragement for my dad. Since we are just starting this long haul, I am unable to answer most of your questions and for that I am sorry. We all are here to help you and to answer any questions you may need. Read the forums and posts, this has helped us. You and your family will be in my thoughts and prayers.

D'Arcy

Hi Steph- The emotions we all go through in just one day are staggering. I don't think anyone can understand it until they go through it themselves. I have days where I can't stop crying(alone of course) and days where I'm very optomistic. I try to remember the "one day at a time" rule and that seems to help. My husband has been very strong but lately he seems so worn out. He is on the Erbitux now and will have another scan soon to see if its working. The medication is taking it's toll on his skin and the poor guy hasn't eaten since September. Still he keeps a good outlook and I guess that's a blessing in itself. Sometimes just counting your blessings can be comforting. Hang in there, Sue

Hi Steph, how did things go through the weekend? Some of our friends found it easier to stop by our home on weekends while I was recovering. I hope the same is true for your family. Did Carter get some playtime with friends in there? I didn't have a youngster at home during my convalescence, and I can imagine that it's a challenge for you all!

Welcome to the best place possible to receive and give support with comrades. I am so glad you found this site. Reading the responses of others to your introduction was heartwarming. To everyone who participates here, I just want to say a really sincere thank you. We all learn from each other, and the compassion and humor others offer is lifesaving :-)

How did the benedryl cocktail work? What a great idea, and I hope to hear good news on that subject. I never knew about that but wish I had! I had to sleep sitting up and with a suction machine at my side for using a couple of times each night.

About the PEG, my opinion is that it's not hurting anything if it gives him the security he needs--sort of reasserting his claim to the fact that it's HIS body and he has a choice. He is not going to starve. It's astounding that his swallowing is so good! YAY! That is such a huge blessing!

Food was an especially emotional issue for me because I was not friends with my mouth any more. I had changed my thinking all through the ordeal NOT to expect to receive any benefit at all from that area of my body. I did not want to feed it--the source of all my troubles--did not want to "take it back." Swallowing hurt so badly and woke up all of the pain in my mouth. I really needed to tell people to let me deal with this on my own pace, and I gave my very loving family permission to suggest or ask but NOT to "tell" me to eat. And if I said "No thank you" that was it for at least 20 minutes. After all, it's MY body.

You may well have already considered this point of view, and if so, at least this is more validation. I so empathize with you, Craig, and Carter. I would encourage you and Craig to discuss the depression with the doctors. Even if you have to express it as your own depression, he will benefit without feeling...uh, more depressed. Your life as a couple and family is so vitally important that if you raise the issue during an appointment, your doctor will surely try to help you. This is so very very common among patient families. And we all know how important mental strength and optimism are. Your own constructive thinking is helping a lot, even if you don't say those things out loud. Sometimes silence is golden.

Do keep us posted, Steph. Thank you for sharing your experiences with us, and please know our thoughts and prayers are right there with the three of you. I hope you have a good supportive environment in your neighborhood and other family members.

After this week is over, I'll bet you anything that Craig will start feeling better. Now is the worst, and it's not for long.

Warmest regards,
Carol

It seems there is always someone we need to hope and pray for in our lil home for OC. I think the Erbitux makes our bodies tired and always wanting to rest. I finished Erbitux about a month ago, had my implants, recovery is still going on, but let my butt get near a chair od bed and it's like teasing a dogwith a bone. I t wants to sit or lay down.