I am beyond myself right now!!!!!!!!!!!!!!

I knew people could be cruel and mean but had no idea to what extent they could go - unreal.

I know my husband is going through a very difficult time and he is not looking good. He has lost about 25 lbs and he couldn't afford to lose any weight as it was.

His radiation and chemo should be starting sometime next week, everything is on the works with the insurance right now.

How can some people assume the worst is going to happen????? Some of our friends talk to me as if they knew he wasn't going to make it.

I've had people ask me what would happen with our house, how soon would I sell it if if he dies. I gave them the benefit of the doubt that they intended to ask this question in a completely different manner but it just came out wrong but nothing prepared me for the next question...

Somebody dared to ask me how soon I would wait before I would remarry ---- are u kidding me???

As far as we know, he is not dealing with a life threatening condition and the radiation will be able to take care of the carcinoma in-situ.

Am I in denial here or are people just darn mean and idiots????

Through this process, we have learned who our true friends really are. Unfortunately, not many. The ones we thought would be there for us are not and the ones we didn't think cared enough have gone above and beyond to see that we are ok and have provided us with unmeasurable support.

I detest that look of pitty and the "you poor things" then there are those people who question everything in the process. Why is is taking so long to start the radiation and chemo? Have you called the Drs?? Why is he not gaining weight now that he has the PEG tube? WHY, WHY, WHY???

Do they think I'm just sitting around twirling my thumbs and waiting for their instructions???

Sorry but I had to vent
LILY

Lily,
I have to admit that no one asked my wife any of those questions in my case but I have brought up some of those issues with friends whose spouses are dealing with late stage cancer. There are complicated legal issues when dealing with a life threatening disease and setting up a living trust, will and advanced directives are something that all of us should do - cancer or not. It was certainly tacky for anyone to ask you whether you plan to remarry (I have to admit also that I have told my wife that she should remarry if anything happens to me).

I too am concerned about his weight loss. Most people lose weight during chemo and radiation. I lost over 60 lbs. myself (I didn't have surgery). Why has he lost so much weight pre rad?

I think that you do have a little denial - SCC is a serious illness. People die here all the time, but to balance that out many people here aslo survive and many of them are late staged like myself.

People can be darn mean, idiots and insensitive (I might add). We even see a few of those here from time to time.

I think that most of us had similar surprising experiences. Good friends vanishing into the woodwork and people you didn't expect rising to the occasion. Some people just have the gift of mercy and others don't. Some are downright scared about being up close and personal with this sort of thing and if your friends are in the same age group. this is pretty young to have a peer with a life threatening disease. I am in my late 50's and have had more than a few friends pass away at this point - the biggest shock of my life was when a very dear friend passed away suddenly of a heart attack at the ripe old age of 38 - I was about the same age at the time and it really stunned me. I don't remember ever having any friends with cancer until I hit my 50's and most of them occured at the same time I was dealing with mine.

I kept people in the loop by sending out regular emails. I didn't have to talk and didn't have to repeat the story dozens of times. Some couldn't even handle that and requested to be removed from the distribution list.

People can say incredibly stupid things when people die as well because they are at a loss for words and seem to have to fill the space with something (even if if doesn't reflect their actual IQ). Stuff like -"Oh it's a blessing that they aren't suffering anymore" or "He(she) lived a long full life". How is this supposed to alleviate the grief? I'm not talking about spouses or sons and daughters saying this but well meaning people who are somewhat disconnected from the immediate family.

Maybe your task is to educate them since you are a forerunner of things to come for them as well.

Gary

My husband has lost all this weight because he has not been able to eat solid food since May. Our ordeal has had many phases. Initially we thought we were dealing with a severe fungus infection as that was one of the things that showed up in the 1st biopsy, the 2nd was abnormal cells.

When the 2nd biopsy was done, those results showed SCC and he had his first surgery done in which a small portion of his tongue was removed. The margins came back clear but 2 weeks after this surgery an infection on the left side of his tongue submerged and that was not biopsied until 2 months later. He has dealt with a very severe swollen tongue that prevents him from swallowing textured food. I was having to put everything on the blender and puree it.

He just had his PEG tube inserted a little over a week and the Jevity has not really done much to help with weight gain.

We are in the process of doing our living trust but I guess I have not really been concerned with his reocurrance because its only carcinoma in-situ. There is no tumor or mass this 2nd time. I refuse to give in to the possibility that he could lose his life to this damm thing.

He has told me on many occasions that he feels like something is still very wrong with him and the Dr's are not finding it. He sometimes feels like this is it for him. He has also said that if something happens I should remarry but I tend to ignore that comment. I don't care much for it.

I am doing everything I can to get him through this and we have been reassured that the rads and chemo will take care of it. There are no signs of it spreading and he did have 2 lymph nodes removed in July with the 1st surgery that came back clear as well.

I guess I am in denial. It just doesn't make sense as he is/was not a smoker.

Lily,

I am so sorry that you and your husband are going through this and that you are surrounded by pessimistic thoughts. I've been there, done that. It's really hard to keep the faith and stay positive about beating this disease when others already have your husband dead and buried. My uncle reacted this way when my sister was sick. After Kim's cancer came back for a second time, he asked my mom if she wanted him to plan the funeral! He saw Kim once in the hospital - the entire time she was fighting this and had the nerve to ask that!

You're right. Some people are just idiots. AND you do find out who your true friends are. I am praying that God gives you both strenth to defeat this disease and the negativity that surrounds you. It's a tough road and I don't think people realize how tough it is unless they've travelled it themselves or while caring for someone who is fighting.

God Bless you and your husband.

Leze, your experience is definitely not unique because 4 years ago, when I was at the bottom of my life, I did come across inconsiderate people around thinking that I was going to die soon. My husband's respected uncle (brother of my father-in-law) who claimed himself an expert in cancer in mainland China came all the way to see me trying to find faults with every kind of treatment I received in HK. When he knew that the tumor on my left neck measured more than 7 cm and I didn't have any surgery to eliminate it, he simply said that unless God had mercy on me, I could not survive and that would be the last time for our meeting. When I asked him if I should request a surgery, he then said the surgery might activate the cancerous cells and spread to other organs. He implied that in either case, I was going to die soon. Fortunately, my husband did not take his uncle's words seriously but you could imagine how I felt at that time. He forced me to take his herbal medicine every day, which I didn't think had any help on my body. I had to take it because my father-in-law, mother-in-law, brother-in-law... all said that he was my saviour if I wanted to live. Thank God he just stayed in HK for a week and it was enough to do damage to me mentally. So when I gradually recovered, he felt disappointed and even more so when I travelled to mainland to visit him a year later.
Leze, we can't control what others say in our ears, nor can we kick them away especially if they are our friends and relatives. If I were you, I would just select the more positive words and ignore the negative ones.The most important is that you have strong faith that your husband can recover after being properly treated by doctors and that you go through the ordeal with your husband together.Take care.

Karen

I should have added that when I DID survive some people didn't know how to deal with that either! They had already written me off. They either embraced me as some kind of hero or they couldn't get far away fast enough.

Fear is an insidious thing - it is truly a tapeworm in the soul. It is vital to have a positive attitude. Anxiety is normal and there are meds for that. I took them all throughout treatment. I did envision that I would survive this, but it didn't come right away.

It was hard to find positive things but it strengthened my relationship and dependence on God, as my faith was what carried me through it. My wife and I were married 2 years prior to my diagnosis and it deepened our relationship and fine tuned what is really important in our lives. There were many gifts as a result of this disease, although some took their damn sweet time coming.

Danny Boy is a master at putting on pounds with PEG feedings - I am sure that he will share this with you. Get as much weight back on as soon as you can. The body needs all the fuel it can get for fighting and healing.

The trick to it is stay in the "now" and not the future - you must take it one day at a time. Start putting on the negativity filter in your brain and block those comments out. Counseling my be very useful right now as well. There are local caregiver support groups that can help you as well, talk to your hospital social worker.

Thanks Gary

I finally decided to block out everything that is not helpful and useful in our lives right now. Caller ID is great.

We have been married for 12 yrs and this truly tests your relationship. It sure makes your bond stronger and you appreciate each other more.

I know that we will get through this, there is light at the end of the tunnel. I know I constantly nag him with encouragement and he thinks I'm crazy but I cannot afford to give in to this. The minute I give up, its over. I have been very successful at not letting him see me crying or melting down. That is the last thing he needs.

We watched the Lance Armstrong documentary on Discovery channel last night and it helped our morale.

Today is looking like a good day already. Thanks Gary. I will need to get some info from Danny Boy

Cinch up your saddle and hold on! Radiation is a real bear. I was pretty hard on my wife who was a perfect caregiver and one of the sweetest people on earth. You will need support too. Being a caregiver is much harder than being a patient. The thing is, is that HE can't give up on this. Cheerleading can only take it so far. This is why other interventions, medications and support are necessary (and we are always here as well). It can be a wild ride.

Get the Armstrong books through the OCF Amazon link (when you first open the forum page) and a small portion is given back to OCF.
"It's Not About The Bike" was the first book he wrote.

Oh yeah, I've heard about that. That is the one I'm not looking forward to. Our oncologist warned me that he will turn into a grizzly bear. I'm ok with that as I don't think he's had an opportunity to vent and let it all out. That may be a good thing for HIM. I think i can handle it but only because I know that it will make things better on the long run.

I was also warned that he might want to give up half way through the treatment. I've already warned him that if we start the treatment, we finish the treatment even if that means I have to tide his butt to the car seat and drag his butt to the hospital.

This site has provided me with so much information and support. I'm ready Gary.

So I guess in our situation things will get twice as ugly since he will be doing chemo and radiation at the same time, huh?

So be it, bring it on. We are SO ready to get this over with.

You are great Gary and your wife is a strong person but her love for you is even stronger.

Lily

Caretakers have a tough road along with the patient on this disease. When I was first diagnosed my husband and I cried together but he told me I had to make the decisions on what I wanted to do. We did discuss doing the radiation with the chemo and that we needed help. My mom was called and she took 3 months of work to help take care of me.

She was there all the time and we had some trying times my mom and I. (Now for some reason she is not talking to me but my sister insists it is not me it is just her.) She didn't agree with the surgery and begged me not to do it. She made a lot of decisions on my care during the treatment. She left after the radiation and chemo treatments ended. I was left at home by myself to deal with what I was going through.

My husband lost my help during my tratment time running our business and was putting in long hours. He sometimes wouldn't come home because he had so much to do. When I went to the doctors after my mom left he would go with me and the topic of having surgery would come up with the doctors. They didn't really pressure they just felt that I needed to fight it with all I had.

I finally told my husband that we really needed to discuss the surgery together. When we got married we became one and that we should make major decisons together. He agreed and we both decided that it would be best to have surgery. It was scary and upsetting. We got everything in order or wills and everything else. This is something that we needed to do anyway and it forced us to get it done.

We have been through a lot with each other and family members through our marraige and we know that we will be there for each other.

It sounds like you will be there for him and getting prepared for what lies ahead. Remember this forum as things get tough as I read other caretakers posts that it is not easy.

Take care and you and your husband are in my prayers
Love
Terry

Hello Lily,

I was on the Jevity for seven months after durgery and during IMRT radiation. Normal pre-cancer weight was 145 and dropped to 121 after surgery. I was inputting 8 cans of jevity per day. Plus eating a little soup and pudding. I gained back the 24 lbs in about 6 weeks.

I am down to 126 lbs and will ask to have the feeding tube put back in next Monday. Most of the weight loss is from depression. Have to really concentrate to input enough to gain weight and maintain once i'm at 145. For me it's easier to gain this weight thru the peg than through the mouth.

I have been losing after my recurrance and the peg was already removed. It's diffucult to eat
real food (swallowing problems) and I find myself eating smoothies. Each smoothie has about 1000 calories and you have to add Whey protein powder to it also. You can buy it at GNC.

Smoothie receipe:
1/2 cup whole milk
1/4 cup half & half
1 Package Carnation Instant breakfast
3 Tablespoons malted milk. Powder form.
1 cup Ice cream

Mix in blender and serve in a chilled mug. it taste like a malt. You can mix the flavor from
vannila, strawberry or choc. You can drink it or inject it through the peg. Remember to flush the peg with water after feeding. You don't want to plug that tube up. You also need the H2o.

Hang in there, you are doing better than you think. There is a special place in heaven for caregivers. We may not always say it but we love you more than you will ever know.

All my Best, Danny Boy

Angie

Thanks for the support. I went back and read all your posts about your sister Kim. She was an amazing girl who fought and fought.

I am getting really concerned about Scott. Todayhas been a very bad day. He has been vomiting most of the day which means he is not gettting anythingin him. Just not holding it down.

He also showed me some blister like spots on his lower lip.

I don't know why he is getting that as he has not yet started rad or chemo.

I don't know what to think any more and I feel like panic is starting to set in.

Please advise me.
LILY

Karen

I am glad you are doing great and you proved him wrong. I think people just assume that cancer means automatic death.

I can't even start to imagine what you went through but the best thing is that your husband stood by you and walked you through this process.

Its very hard to ignore comments made by others and what makes it worse is thatthey claim to know more than you.

We have a friend in pharmaceutical school and he questions every medication and then questions the doctors' integrity and knowledge. I feel like he thinks I don't know what I'm doing and that Scott should be trying every new medication out there. He actually expects me to go tell the dr's what medication to put Scott on.

Mind you he is only a student but they don't understand the psychological effects that it does to you. His comments hurt my feelings and make me feel even more helpless but I finally had to put my foot down on that one.

This is so hard Karen.

I feel very lucky to have found this forum where I can get first hand experience that no school in the world can teach.

I hope you are doing well

Terry

People have different ways of handling this types of situations. Its not easy. I myself avoided a couple of my friends that were dealing with cancer because I didn't know what to say or do.

Boy do I understand now!!!

Many of our friends were there for us when this all started and as things have gotten complicated they somehow have disappeared. Even his mother has kind of faded out and that bothers me like you have no idea.

I don't think your mOm is upset with you or that you have done something wrong. Maybe that is the best way she can deal with the situation at this time.


Scott and I have taken every decision together since the day we got married and no matter what others say and think, you somehow just know whats best for each other and what works for you both.

Scott and I have discussed many things lately, some that I'm not crazy about but that had to be dealt with at some point. He has talked to me about what he would like me to do in the event that something happens to him. He feels that I should remarry and move on with my life since I'm young. He also recommends that I leave CA and go live my dream life in NC.

I agree that when you get married you become one. That is something that I constantly have to remind him of because he apologizes often for putting me throught this. "IN SICKNESS AND IN HEALTH, FOR BETTER OR FOR WORSE"

that is what I committed to when we got married 12 yrs ago and I'm sticking to it.

I admire you Terry, please stay in touch
LILY

Danny Boy

You and Scott have the exact same weight both before and after treatments.

He is currently at 124-126 but today he had a very difficult time keeping the Jevity down. He started on the Fentanyl patch about 5 days ago and its not working out. So the patch came off per Dr's orders.

When he was able to swallow we did the protein shakes with the ice cream and the weight gain supplements. It helped but when swallowing got harder then that was no longer an option for us.

He had the PEG put in a week and a half ago. We tried feeding using the serynge method and he got to nauseaus, then we tried the pump and it also made him sick. I don't know what else to do. He was taking compezine but his gastro Dr now has him on Ragnol.

I ordered the benecalorie nutrition fortifier but have not received it, it should be here any day now.

I am worried that rad and chemo is going to be too much for him if he is not able to put some weight back on. At 5'6 and 145, he really couldn't afford to lose any weight.

He is so weak and lays in bed 95% of the time. He is nauseauted most of the time so basically or choice was to have him live with the outrageous headaches and ear aches and food or keep the patch which aliviated the headaches but holds down no food intake.

I don't like seeing him walking around holding his head and the left side of his face. All this is taking place and his treatment hasn't even started.

What can I do??

Lily,
I hope Scott's doctors are aware of him not being able to keep food down especially now before treatment. I lost 25lbs the first month of treatment and got so week that I ended up in the hospital! (I lost a total of 65lbs) I was overweight anyway but losing the weight so quickly was not good.

I walked around with an ice cream bucket (even though since i got thrush early on i didn't want anything to do with ice cream just the bucket!) to get sick in!! I also felt nausous the whole time!! I just could not predict whether i was going to get sick or not.

after treatment ended and I got off medication then I didn't get sick as much. The doctors felt it was partly due to my nerves and I feel the same but they also said the treatment is also taking a toll on ones body.

My dietician had me taking Prosure that had fiber and 350 calories. Walmart sells an equate product simular to this and this is what I use along with ensure plus I am eating some soups.

Your concerns are very valid and please keep posting to keep us up to date,
Love
Terry

Terry

I had to call the gastro Dr. this morning tolet him know what is going on. Things seem to be getting worse, he can't even hold down gatorate.

He will need to go in and have an x-ray done to find out if there is something wrong with his peg tube.

He is also scheduled for a dental appt to have his stand done for radiation. Its a stand for his tongue. This might not happen as I don't think he has the strength to go.

Unfortunately this only delays the process to start him on his radiation. I think the best thing for him right now is to have him hospitalized and monitored but we'll see what they say later on.

Keep your fingers crossed for us.

Thanks
LILY

Leze, it sounds like you are perfectly right about him needing to go in and be monitored for a while in the hospital. I know that isn't what either of you would wish for, but if he loses this much stamina BEFORE treatment, it will make it rougher on him DURING. I hope for the best for you both, let us know how things progress.

Andrea

Lily,

I know Kim had difficulty with her peg tube at first and then later throughout. At one point, we were giving her meds through the peg tube and suddenly in the middle of the day, the tube clogged or something and we weren't able to put anything through the tube. We ended up at the hospital yet again, and they had to reinsert her tube since it was pushing against her stomach which caused the problems. Then later, it began leaking anytime we would feed her. I think sometimes, there can be difficulties with the peg tube, which I'm hoping are the cause of your husband's nausea. Oh, and Kim would get nauseated if we inserted anything too fast through the tube, so literally we had to spend over and hour feeding her because everything had to be done by syringe (sp?) and slowly.

Have you found out anything about the blisters on Scott's lip? Maybe they are a reaction to the meds. Are they painful for him? I would ask the doctor if there is anything that you can swab them with.

I hope your appointment goes well with your new doctors. I will keep you both in my prayers.

Angie

Leze, to calm your fears about chemo. I had some trembling fears about chemo, especially having to go through that and radiation at the same time. However, chemo, in my experience, was the easiest part of the process. The nurses were by far the most compassionate, and were not horrified by my puking in their wastebaskets... lol. I also didn't have a very fine experience with the PEG tube. Looking back, I wish I could have put more cans of tube food down it to have avoided as much weight loss, but like your husband, I was a sick puppy. I had to avoid the syringe and use gravity bags. The gravity bags sometimes took as long as 40 minutes to do a feeding, but I would watch TV in the recliner or distract myself (sometimes I even managed to fold clothes hooked up to it)

As for the idiot people we all must deal with...I must say, I don't want to sound bitter, but the "ugly side" of humans hurt me far worse than having to endure treatment. Caller ID is a wonderful thing, I agree. It's rather hard to get involved in an emotional altercation with someone when you are already weak. My mother sent me a "bitching out" letter for not paying attention to my father's birthday. She did allow that one of my excuses could be "too sick" No matter how angry it made me, I wrote back "Perhaps it's better that we just not communicate" It seems much more simple to disengage politely.

Even when I was at my sickest, I tried hard not to lose my temper on people. Quite often I would back away and think about whether or not my perspective was skewed because of the pain meds or weariness. It just seems easier to avoid the conflict all together by closing off those that unwittingly choose to annoy, harrass or simply cannot understand what I am currently dealing with.

One of the lessons I've learned from all this is that life, no matter how long you get, is too short. It taught me to prioritize what's important. Those that I love, I love fiercely. When it comes to time itself, I prefer to spend it on good stuff. Every minute seems to be more precious now. I simply REFUSE to spend it in the company of others I don't enjoy.

It's unfortunate that when we are the weakest we have to see some of the more deplorable sides of human nature. Prior to getting sick, I was dutiful in remembering birthdays of nieces, nephews, parents, friends etc. It seemed like I was the caretaker not only for my own family, but everybody around me. This year, it's all that can be done for me to keep up with paying the bills and the bare minimum of keeping the house going. My focus is more on survival.

It sounds so incredibly selfish to be focused on survival, but I made peace with the fact that I won't survive unless I make my needs a priority. I cannot afford to let the emotional baggage of others to get me down. (If I live to be 80, I think I've finally learned this lesson) People I consider to be "energy suckers" distract me from my course of well being, so I spend my time more wisely now.

I sincerely hope that things start moving forward and much for the better for your husband. Keep us all posted.

Jen

My brother had a very hard time tolerating many protein drinks. He, too, threw them up. The only thing he ever found that didn't make him sick was called "Severe Mass". I ordered it online from a health food place. As for people...My brother passed away at the end of July. Just one month later the person I thought was my best friend said something to me about him and tears came to my eyes. She said, what's wrong? I said I was just sad about David. She looked totally suprised and said, "I didn't mean to upset you, I thought you'd be over all that by now." It had only been a little over a month since his death.
Although she is still my friend I will never see or think about her without remembering those words. As my brother said following surgery, the only things that really matter are family and friends. Times like these will seperate true friends from mere acquaintances.
All my love to you and your husband,
Tonya

My brother had a very hard time tolerating many protein drinks. He, too, threw them up. The only thing he ever found that didn't make him sick was called "Severe Mass". I ordered it online from a health food place. As for people...My brother passed away at the end of July. Just one month later the person I thought was my best friend said something to me about him and tears came to my eyes. She said, what's wrong? I said I was just sad about David. She looked totally suprised and said, "I didn't mean to upset you, I thought you'd be over all that by now." It had only been a little over a month since his death.
Although she is still my friend I will never see or think about her without remembering those words. As my brother said following surgery, the only things that really matter are family and friends. Times like these will seperate true friends from mere acquaintances.
All my love to you and your husband,
Tonya

My brother had a very hard time tolerating many protein drinks. He, too, threw them up. The only thing he ever found that didn't make him sick was called "Severe Mass". I ordered it online from a health food place. As for people...My brother passed away at the end of July. Just one month later the person I thought was my best friend said something to me about him and tears came to my eyes. She said, what's wrong? I said I was just sad about David. She looked totally suprised and said, "I didn't mean to upset you, I thought you'd be over all that by now." It had only been a little over a month since his death.
Although she is still my friend I will never see or think about her without remembering those words. As my brother said following surgery, the only things that really matter are family and friends. Times like these will seperate true friends from mere acquaintances.
All my love to you and your husband,
Tonya

Hi Jen,
I relate to you totally and how you feel about prioritizing your time. Before my diagnosis I owned two gymnastics/cheer gyms and my husband and I thought it was the best job for me as my day usually began at 4 and I could take the kids with me. I lived at those gyms and became far to involved in the lives of the families that brought their children to my teams. Now, two and a half years later, I coach a small team at my childrens high school, don't own any gyms, don't work outside my home, and I LOVE LOVE LOVE it. My family is stronger, my marriage is stronger, my kids grades are loads better and I feel like I am living my life with a purpose now. Before I was always waiting for tomorrow, now I love every minute of today and fall asleep dreaming of yesterday. Our perspective after cancer is one that only other cancer survivors can understand.

"Our perspective after cancer is one that only other cancer survivors can understand."

Amen, Minnie!

People were amazed that I packed up the family and moved to Florida while DD was a senior in high school. I had started watching for jobs, planning to move in the summer. Perfect opportunity came in March. She stayed with a friend for two months, is here now and everyone is thriving. Never would have done it if I hadn't already lived through the scariest thing I could imagine.

How true, how true Minnie. Gosh, that sums it up! and Good for you Lisa....Take Care, Carol

Andrea and Angie

Well, we finally got things worked out with the peg tube. It was the fentanyl patch that was making him terribly sick.

As of yesterday he is taking about 3500 calories and doing much, much better.

We have also finished the fitting for the radiation stent so we are ready tostart the radiation simulation this Monday.

One day at a time is the bet way to go.

Thanks ladies

Lily,
Glad to hear that they figured out what was making your husband sick and that he is doing so much better. Keep everuone posted on how things are going.

Take Care
Love
Terry

Lily,
I am SO glad to hear he's doing better. It's good he is able to take in the 3500 calories. That'll do him a world of good.
Hang in there, keep us posted! We're in your corner!

Andrea

Great News Lily,

If he's inputting 3500 calories a day he will do fine. Remember to make sure he's getting protein and plenty of water. As you start your journey down one rocky road remember we are here for you. Ask any question you can think of and someone with similier treatment will respond.

Use the search engine at the top of the page. Just about any question on Oral cancer has been discussed. The more knowledge you have the better off you are.
Many of us have traveled the path you are on and survived and he can to!!!

All my best, Danny Boy

Sorry I haven't been around in a while. A lot has happened in the last few days and its not all good.

Sunday night as we were watching TV, Scott's tongue started bleeding uncontrollably and I had to call 911. We were taken to a local hospital and they were no help. They just stuffed Scott's mouth with gauze so he can pressure on it and after 4 hrs of doing so they sent us home.

Withing 45 minutes of being home, I had to call 911 againas he started bleeding even more than the first time. So much so that scott blacked out and lost consciousness for a few seconds that seemed like an eternity.

This time we were taken to another hospital where they did so much more to help him. They immediately contacted his ENT and arranged to have him transported to another hospital where he can be seen by his cancer doctors as this was out of her range of knowledge (at least she was honest).

At 6:30am he was transported to USC and we saw his Dr's shortly after. 6 or 7 Dr's have seen him and not one has been able to tell us where the bleeding derived from.

The radiation oncologist saw him this morning and discovered a lump behind his throat but they are not sure if its cancer or something else.

We will start radiation treatment tomorrow. Scott was able to do his first simulation yesterday, they will do the 2nd phase tomorrow and do some manual rads as they don't yet have the plans.

Thanks for all your support and sorry if I have not responded to your posts but I know you understand.

Leze, what a scarey time you and Scott had. Hope things go easier over the coming weeks. Amy

Leze
I don`t know how I managed to miss your posts but I did .
I am so sorry you and Scott are having such a rough go of it, hopefully his Doc`s have a handle on things now.
When you can, let us know how things are going for you both.
Take Care
Marica

I don't understand why things keep getting so complicated for us.

It has been one thing after another and it just doesn't end.

I really hope that the radiation and chemo work right away. If it doesn't work then I don't know what else we can do.

Please keep us in your thoughts and prayers.

Lily,
I hope all is ok with Scott and you.
I completely understand your anger and fears.
When my Mom had her peg tube placed, I was scared to death but also happy that I could help assure she recieved the nutrition she would need to fight.

We used the gravity style and boost high protein per doctors orders. At one point, her tube came out and I freaked cause I knew this was the only way she could "eat". It was immediatly replaced. I found that forcing the boost through (plunging/syringe) wasn't good for HER. it was too much too quick. At one point, we were putting in 2 cans 4x a day to get her weight built up.

Mom also held the right side of her head all the time due to the pain being so great. I was constantly insisting on getting her pain managed.

As Danny Boy pointed out, depression (and nerves) also can come into play on all this too, for BOTH of you. So PLEASE take good care of yourself as well.

This is a very harsh diesease and treatment.

My Mother and I always would start and end the day with a Kiss and an "I Love You" for we did not know what the next day would bring.

Hang in there and take care!
dee