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