Well I just wanted to share. Tomorrow is training day for the PEG. The insertion went very well. The doctor was pleased and Harry is resting (I hope) in the hospital tonight.

Bright and early tomorrow we will get a lesson from the nutritionist on the do's and dont's and hopefully in no time he will at least be getting the necessities of life again.

I cannot tell you how much relief I am feeling knowing that this is done. He is not relieved yet but in time I hope that he will see it was best.

I know that it seems easy to speak of these things when I am not the one being poked but I feel him when he hurts and it is terrible.

Today, for the first time, I got up the courage to actually stay in the rad room with him while they got him all setup. They put the shunt in his mouth and then put on his mask and I just watched as he laid there. I was crying inside and eventually outside because it just seemed so hard for him. I do not know what it takes for any patient to go back day after day and endure these treatments but you are really strong people. That I know and Harry is too and I know that there is nothing that I am doing that can ever compare to what he must endure.

My respect for every one of you who have made it through this process increases exponentially as each day passes!

Cindy

Cindy,

Be sure and share the feelings (you just shared with us) with Harry. Let him know it broke your heart to see him strapped down in his mask awaiting his treatment. Let him know how proud you are of him battling this horrible disease. Let him know how much you love him and how you will stand by him no matter what. Pump him up and he will build a little enthusiasm and energy. It's the little things that we remember the most through this.

For example, I remember stumbling in with my barf bucket in one hand and my water bottle in the other. I was racing to the bathroom only to have the rad center worker hanging out in the toilet reading the paper. I stumbled in several times and when I didn't know for sure which end would explode first, I ordered my wife to stand guard and I bolted into the lady's room. That was a first for me but sometimes you just do what you gotta do!! The best part of it is being able to laugh about it now. I am sure you don't see a lot of the humorous side right now but those days will come too.

Your job is one of the toughest. To have to sit back, lurking in the shadows while the entire team spends all their time on Harry. Take a few minutes for yourself every chance you get.

Hang in there.

Ed

Cindy,

Once Harry starts to use the peg and get some nutrition he will feel better. It will help him get through his treatment and hopefully feel stronger. It may hurt for a few days or even a week. But it gradually felt better everyday. He is a lucky man to have such a caring woman beside him!

Good luck to both of you!
C

Ed,

I know that I don't always sound very positive here and I guess that is because this is a place where I can let go of those things that I cannot let go of anywhere else.

When I am with him I am always reminding him. He can do this. I am here and I will never leave. He never has to worry about being alone and I am constantly telling him that. I say I love you a million times a day in case he has a memory lapse between them.

I don't think that he knew I was in there today and if I tell him how it breaks my heart to see him this way it will only make him worse. Some people can hear those things and grasp them tightly others, like Harry (who already feels like he is ruining my life) take things like that and use them to reenforce the negative feelings they are already having.

For now, I cry silently, in my heart and with my closest friends. The day will come when it is right for me to tell him everything about how this is for me. That day just isn't now. I wish we could share like that but he just can't and I do not want to make this any worse for him than it already is. It is complicated for sure. Over the years I have learned how to do things that on the outside are just what they need to be regardless of what is happening on the inside.

I let it out when I have to and when I know I need to places where it is safe to do so. There are times when I wish we could cry together and just hold each other but we can't. At least not now. I am learning my day at a time and while it is exceptionally difficult sometimes I make it through.

When we started this journey I was convinced that I couldn't do this. I never told Harry that but I did tell someone. When we got about 5 weeks into this and I was beginning to feel what true exhaustion really is, that someone (to whom I continued to profess that I could not do this) looked me in the eyes and said, but you are doing it.

I was so focused on what I thought that I couldn't do that I couldn't see what I was doing. I can see it now and I am doing everything I can to try to make his life as good as it can be at this time.

He is my heart and everything that is good here comes from us as one. I just keep trying to keep my eyes on the goal and each day gets us closer.

When they wheeled him out of the rad room today I was waiting at the door. He looked up at me and I stuck out 4 fingers. I said only 4 left to go and we can count the end of these treatments on 1 hand. That is a long long way from where we started. Every moment of everyday I remind him. I struggle silently and away from him with the issues that pain my heart, but he does not know that and for now that is what is best to help him get through this.

I drop the kids off at school at 7:30 and then I am straight to the hospital for the day. How quiet is my home tonight. No IV pump beeping and the like.... and I miss it kind of because it is a silent reminder that he is not here. I look to tomorrow. I shelve today. Someday we will be like you. I know it even when it seems that I am doubting.

Thanks,
Cindy

Dear Cindy,

My heart just goes out to you every time I read one of your posts. I feel your pain...I hope you are feeling a little better knowing Harry is almost done! Only 4 more treatments, I pray you can both start seeing the light at the end of the tunnel. I know my husband Ron was so RELIEVED when the treatments were finished. He no longer had to wear that mask. I'm sure Harry will feel the same way too. Maybe it would help you just to try to take it one day at a time. When you wake up, just think about making it the best day possible...for yourself, Harry, and your family. Don't even think or worry about tomorrow. Just concentrate on today. In time when Harry has started healing more, then you can think about tomorrow. Give yourself a well needed rest. It seems like you have the weight of the world resting on your shoulders, and you shouldn't be doing that to yourself. Sending hugs your way, and keep hanging in there, this phase is almost over.

Best wishes,

Shelley

Well what a day. And I am not even half way through.

It started at 3am when the heavens opened up and dumped the wrath of hell upon us. The power went out, we were awaiting the tornado (thankfully it never came) and my neighbor lost a huge tree that blocked the street this morning so I had to go way around the block to get out of the neighborhood.

The kids and I huddled in the kitchen and listened as the torential rains poured from the skies. One of the dogs was on the porch and in the pitch blackness I opened the door to let the dog in and lightening struck what felt like my neighbors house. The sound was deafening and the light was bright. The kids screamed and the dog freaked and I tried to get the hair on the back of my neck to stand down.

The lights stayed off until morning and the alarm didn't go off so the kids were a half hour late to school. Then it was finally off to battle the Houston traffic into the Med Center to the hospital.

Harry refused to allow the nurse to start the feeding until I got there so it was after 10am when we finally got things rolling. He was in terrible pain and swore that he had asked for meds through the night but the night nurse said that she asked him several times if he wanted it and he said no. Who knows what really went on. Next time I just need to call the nurse myself to make sure that he gets it. Gotta love the morphine!!

For most of the day he slept and I worked on my homework for school. Thankfully I am on spring break this week.

So now you are thinking that the day has passed and we are home resting comfortably... oh contraire!!!

The rad machine has been down all day and I had to leave to go home to take care of the kids. He wants to stay another night in the hospital but they won't let him and he still has to do his rad treatment for today. So I am home with the kids eating mac and cheese waiting for the home health people to deliver supplies and then we all have to pile in the car and head back to the hospital for my training (which has not yet happened) and then we bring Harry home. I imagine it will be sometime after 9pm before we are home.

Then it is baths for the boys and getting them settled for bed, getting Harry settled for the night, then dishes and laundry and maybe by 1 or 2 I can retire to my couch and turn on the music and for a moment shut out the world.

We can only hope. :-)

So I guess in a weird way I have to take things one day at a time because there is so much that happens in just one of our days there is no time to plan for tomorrow. :-)

I think that once this is over I am going to try to get a job as a CEO somewhere. I know that I can multitask and manage very well so maybe I can put these skills to good financial gain.

Cindy

Ammendment to my last post. Harry is not home yet. We went to the hospital at around 6:30 only to find Harry in radiation. He was finishing his treatment when I arrived (this time with the kids in tow). I wheeled him back upstairs after treatment expecting to get my training and then leave. What was that term I used earlier..... Oh Contraire.....

Turns out that the orders stated that once they feed him they must watch him for 3 hours after. That would have been at the earliest 11pm. There was no way that I was going to be able to keep the kids occupied for that amount of time and be able to keep myself awake for the 30 mile drive home. So I told the nurse to call the doc and insist that releasing him at this time was ill advised.

They did as I requested and he is at the hospital. Tomorrow.... well I know the plan.... I can only wait and see what actually materializes.....

I am so tired that just maybe I can go to sleep at a normal time. Whatever normal means. :-)

Cindy

Cindy,

I'd really like to tell you that things sound a bit hectic for you but I am afraid you might just hop in the car, drive 4 hrs up the interstate and commence to kick my butt!!!

I could offer to drive down Saturday and give you the day off. I might be a bit rusty with kids as mine are 14 and 16 now but I am willing to give it a try if you need it. Just let me know.

AND NOW THE DRUM ROLL PLEASE...

3 more treatments!!!! HOORAH!! Take the time to celebrate the milestones along the way. You certainly have earned that. You have done what you thought you couldn't and I had a heart warming sensation reading your post as you passed the baton off to someone just starting this journey (Debbie). You will be a great resource for her, I can already tell.

It won't get better for a while but the time in the car will definitely start winding down. You have done a great job and you should be proud of it.

Ed

Oh Ed,
Better isn't in the vocabulary at the moment. He is at his worst yet. He has dropped almost 15 pounds in the last week and a half alone.

He is on morphine now and that just complicates things. He is pretty much helpless right now.

When we finally got home today I sat down to feed him and he looked at me and said "I am not a freak show". It took me a while to understand what he meant. He wanted me to know that under no circumstances was I too let anyone see him.

I can only guess what is going through his head. I have to walk behind him now and even go to the bathroom with him because he is so groggy from the drugs that he will fall asleep and fall down. That is certainly one more complication we don't need.

The burns are getting worse and I have not been able to treat them because he won't let me. I have to fight with him just to get him to sit up a little so I can feed him. He begged me not to give him the food tonight but I had to be stern with him.

It didn't help that I went to 20 pharmacies trying to get his morphine prescription filled. I finally found a way to get some but it was not without jumping through hoops.

I dream of the day when this is passed. I don't know if I will every really look back and find anything to laugh about but I would at least like to make it to the look back stage.

Only 2 rads left. Tomorrow and Monday. Monday starts chemo #3. Then we are one chemo away from completing the treatments all together. I will keep hoping and you can keep praying. Maybe we will strike gold.

Cindy

Cindy
This all sounds way too familiar. Yes I still think we have the same guy only displaced into different bodies. Keep Fighting you are so close to the end of this part of the road. Remember rads and chemo are cumulative and the effects still kick worse for a few weeks after you are done. Bob commented today that the two/three weeks after treatment were the closest he ever wants to come to death without dieing...BTW After I read your posts I asked him how he felt when I was upset during his treatments and he responded "were you really upset? I really didn't register it I was so focused on all that was happening to me " He truly doesn't remember anything about me being emotional at all but he does remember me trying to get things done. When you are down and the crying seems uncontrolled you are just hitting the wall similar to the wall elite athletes have to push through to complete marathons etc. We have limited resources and somehow this release is necessary to replenish our strength. I don't know how that works but it does. Keep putting one foot in front of the other. You are so doing this thing. And the right way!!! Morphine is actually your friend right now. ( I too had the pharmacy jerk around) Harry needs the release despite the complications. I did notice that some of what Bob said under the influence really wasn't logical, but he was relieved of his discomfort. My analytical engineer was seemingly confused? However be aware of the potential side effects. Bob's worse was the constipation, don't know if that happens with a PEG but if I wasn't prepared with lots of Senekot it would have been awful instead it only was difficult. Anyway get prepared for crossing the finish line, even if it isn't where you thought it would be.
And remember somebody may move it but it is attainable. Peace Denise