As if I weren't already worrying about everything under the sun, another unforseen issue has arisen for which I need your advice....

The good news (if there ever really is any):
Harry is scheduled to go into the hospital Monday to have the PEG put in. He is not very happy about it, as I suspect many people aren't, but he has not had the drive or determination to try to eat and he is losing weight fast and furious as well as being malnourished and somewhat dehydrated. We are almost done with the rad tx. Only 7 left (I think).

The bad news (and the advice point):
We went today to meet and greet the Gastro doc. She happens to be in the same treatment area as our oncologist, so in this process I talked to the nurse for our oncologist to let her know that he was still running fever in spite of the antibiotics and other meds he has received over the last 10 days. She talked to the doc and he ordered another blood test with cultures.

We went to the lab and for the first time I saw my husband wince in pain when the lady stuck him. (both times)
Then we went down to the basement for rad. While we were there I was inquiring as to how many txs we have left. The tech explained that the actual tx plan is complete and they are now doing a boost tx. (whatever that means)

Then the tech asked me a very curious question. Was my husband able to do his tx today? I looked at him a bit puzzled and asked why he was asking. He said because my husband left yesterday without getting his tx.

I was floored and I know that the tech must have sensed that I was not aware of this when I turned to him and said, "I know he didn't have tx yesterday because there was something wrong with the machine." At which point the tech looked at me and said, "No, the machine was fine, your husband said he couldn't do it and left."

My heart fell to the floor. Here he is at the end of these txs and he walks away. And on top of that he lied to me about it.

I wasn't sure what to say to him. I know what I wanted to say (and didn't of course). I wanted to yell and scream at him. "ARE YOU CRAZY!! AFTER ALL OF THIS TIME WHEN YOU CAN SEE THE FINISH LINE?"

He did do his tx today but that was because I was standing over him. Yesterday I had a hearing test in another part of the hospital and he met me there when he was done (quit).

So all of this long winded explanation is leading to this anything but simple multi part question:

Have any of you backed out or do you know someone who has? How do I help to keep him on track? What if there is nothing I can do and he just gives up? It seems like a lot to go through to walk off in the 9th.

I am truly struggling to understand not only my own feelings but the pain and suffering that you as the patient endures through this process. I am only of one perspective unfortunately so I am doing my best to understand something of which I really cannot understand.

The only things that I know are these:

I love this man more than my own life and I would give all of myself to take his place. 6 years ago we had a car wreck and Harry was in ICU for a couple of days, in the hospital for 14 days (I never left his side) and then 8 days in rehab. 3 Months in a wheel chair and every May 27th I celebrate the new lease on life he was given.

We were in love and had only been living together for 2 months when the accident occured. I remember begging God not to take the man that I finally found in my life to love me forever. I was sure that he was the one. I am still!!

Now I beg and plead that he will make it through this. I have everything to give and nothing to help. All my efforts can never change what will be, whatever that is, but I try and give more than I have. I wish there were points for love because maybe I would have a couple anyway.

I know this seems long. I am sorry it is just that writing is my release, my therapy. I need input worse than a computer. I am forever trying to figure out the things in life that are almost pointless to ponder. The nature of a very busy mind.

Thanks for reading. Sorry about the length. I just have to build the watch. Nature of this beast I guess.

Cindy

Cindy,
a "boost" is typically given for advanced cancer patients. The typical amount of radiation is around 72 Gy, the ""boost" would bring it to 81 Gy. I missed a few treatments from being very ill. This did not please the radiation oncologist. I also missed a few treatments because of machine downtime. All of my missed treatments were made up and I received the entire amount.

My oncologist told me that persons not completing their course of treatment have significantly higher mortality rates. If pain is the issue, then they can adjust his pain management meds. If dehydration is the issue, they can rapidly rehydrate him in infusion -he will immediately feel better (being dehydrated makes you feel like crap).
Either my wife or a friend drove me to every treatment (it was a 60 mile round trip). Since radiation was my primary mode of treatment (with Cisplatin as an adjunct) missing radiation wasn't an option as I didn't want to die. You should be with him for these last 7 treatments (obviously not actually in the treatment room).

You need to express your feelings and your fears to him. You may want to have a private talk with his radiation oncologist as well.

I have had some bad "vamps" (blood takers) and I have had some some good ones. Ask for a pediatric needle -it's a lot less painful. Also bruising is a lot worse when dehydrated.

Cindy,

There were a few times in the mid-to-late stages of my radiation treatment when I felt so terrible that I begged my radiation oncologist to give me a day or two off (with the understanding that it would be made up). Once or twice he let me do it -- I'm not sure of the rationale, but I guess he felt it was manageable and would not jeopardize my long-term prospects. The other times he said I had to go ahead with no break.

Cathy

Cindy,

My husband Ron had 7 weeks of radiation. At the end of the 4th week he started hemoraging (sp), it was the part of his throat that was being radiated, and wound up in Intensive Care at the hospital (scared the hell out of us). They had to do an emergency trach, and pack his throat to get the bleeding to stop. He was in the hospital for 4 days and missed a week of treatment. We talked to the Cancer Docs and they said missing the week would not jeopardize the treatment process, so he just made the week up afterwards. As it turned out, him having to take that week off from the radiation actually seemed to help his body. It made finishing the treatments a little more bearable. Hope this helps.

Take care,

Shelley

Dear Cindy

I can understand how devastated you are feeling. I can also understand the dread your husband felt. There were times when I felt I couldn't face the mask and the aloneness in the treatment room but I kept going, counting off the days one by one. I had one long break for Easter in the middle of my treatment and benefited from that rest.

Your husband may feel that he let the 'team' down by not having his treatment. Let it go and stay with him for the remaining treatments. I'm sure he will talk about it when he is able - you seem to have such a strong partnership.

This journey is so difficult for everyone involved. Your husband is fortunate to have you by his side.

Love from Helen

I too wanted to quit towards the end & the tech rationalized me through once, begged me through another time, & just let me cry on her shoulder until I did it another time! I was pathetic, but feeling what I was feeling at the time. I think back & guess I just wanted some control over something, whether it was good for me or not. Doesn't make much sense now! I remember feeling sooo beaten down & just felt like I couldn't do it any more or that more treatment would make any difference because it was all pointless. I was definately depressed. Somehow I stuck with it & did complete radiation, however I didn't take the last cisplatin treatment. That was a dumb move on my part even though I am cancer free today, 9 1/2 months out. Time will only tell. Ultimately he will have to make his own decisions & I hope he follows through & believes us when we tell him this will pass & he will feel better. He's in a tough time right now. Keep yer chin up & breathe!

Hi Cindy, I think your husband is losing his directions now suffering from physical and mental pain. My original plan was 42 rounds of radiation and when there were about 6 left, my neck was burnt already and I suffered from high fever. I was admitted to hospital for hydration, blood transfusion and antibiotics.Every time the nurse brought a wheel chair near my bed, I knew it was time for me to take the 'punishment'. I didn't resist because I knew very well to go or not to go simply means to live or not to live! I was a submissive patient and never brought trouble to my oncologist until the day when my oncologist told me that he needed to add 6 more rounds of radiation. I cried and said no but I had no choice because my oncologist said that the boost was necessary due to my very advanced stage. Missing that may lead to my regret in life. So with tears I lay on the radiation bed and even the radiologist shook his head when seeing my bruised, bleeding neck tightly fastened with the mask.He said my oncologist was too harsh and unkind to me.But now I am so grateful to my oncologist whom I respect as my life saver. Hurdles were mountainous and I never thought I could surpass them.My husband and the 2 sons were a great incentive for me not to give myself up.Somehow your husband and you together with the doctors can arrive at a compromise on how things can move on to the benefit of your husband's health.I believe there must be a way.Encouragement and support are most important now, Cindy.

Karen.

Cindy,
I do truly 'feel your pain.' My husband was so ill at one point in his chemo/radiation treatment that he could barely walk, and I had to almost force him into the car for the 90-minute drive to the radiation center. He ended up in the hospital with a blood clot at the kidney and was there for a week....very sick boy. Luckily, they were able to somehow keep him on the radiation schedule, though they did put off his chemo treatment for 2 days. He fought going to that treatment! Did NOT want to be in that chair for the day....and I really had to talk him through the entire day. I was so afraid he was going to give up all treatments. He had lost 30 pounds - was down to 127 - and looks ever so frail and 'breakable.' It was the scariest of times.

I do believe that reminding him every day of how much I love him - and need him - and of all we have planned for the future - has kept him focused on recovery. I tell him how proud I am of his determination to beat this thing..

God will give you the strength and courage you need, Cindy. Try not to despair; you'll be surprised at how much you can take.
Love
Nicki

Cindy,

I am sorry to see you anguish so. I remember at one point my neck being a bloody mess and spending a couple of days in the hospital. The doctors offered me an ambulance ride to keep going to radiation and I jumped on it. However, my idea of an "ambulance" ride was to get in the back and whisk over to the radiation center, 3 blocks away. An elderly gentleman in cowboy boots and a cowboy hat advised me he was her to offer me an ambulance ride. When we got out to the parking lot he showed me to his plain, white van and my rapid heartbeat slowed down immediately.

I remember the blood oozing out of my neck and thinking just a few more days and somehow finding the resolve to just make it one more day. I think my wife would have insisted on not stopping the treatment but if I really didn't want to, I would hope she would have supported that, given the treatment plan would only be postponed by that one or two treatments I missed. I read in your posts how much you love your husband and wonder if there was a gentle way to raise your concerns in a firm but friendly way. It is the bottling up of emotions that makes the process unbearable and when two people love each other like you do, a few sentences sometimes prevents a major blowup.

Best wishes to both of you.

Ed