jacquesusa's Cancer Blog
June 18, 2008
| Chapter 7 Treatments over. Now what? | Views: 1131 |
Well i can officially say i went through neck radiation for 6 weeks!
I have a little photo montage you can look at at http://web.mac.com/jacques_usa/
Now that my treatments are over i will reflect back on the 6 weeks. The first two weeks were a breeze until you start to feel the symptoms. Then as the symptoms of sore throat, fatigue and mounting burns develop you mentally keep your eye on the prize that after the treatments are over your gonna bounce back. The interesting thing is that going to radiation becomes a daily routine. For me i had to be there every day 2pm for my 2:30 radiation. At 2pm I was injected for amaphostine, a nasty drug that is supposed to protect my salivary glands from permanent radiation damage. Problem is that it makes you nauseous and many people can’t tolerate it. I was able to get about 13 or 14 injections or half the radiation program before i started getting severe rashes and nausea.
In the waiting room you see the same cheery nurses who are always so caring and nice, and you commiserate with several other cancer patients who are at various phases of their chemo/radiation combo. A lot of talk of being tough, praying to God, and things will get better.
By the secnd week into the treatments as i started to feel the effects, fatigue, thick saliva, and borderline nausea.
Then at the end of the second week my Mother suddenly died. She had advanced Parkinsons. They managed to revive her though she was brain dead, and I spent the weekend in the hospital with her by her bed holding her hand. I had hoped that her heart would stop while i was there but it kept beating. I left the hospital devastated knowing i would never see my mother again.
By the time the weekend was over i was exhausted beyond belief and had to face my 3rd week of radiation.
My throat was so tight that i couldn’t eat anything and started to dehydrate as i was throwing up violently for no reason. That’s when i really started to drop the weight. The rest of the radiation treaments became a blur. I would start my morning either throwing up or trying to feel semi ok after taking a cocktail of drugs and pain killers, then i would show up for radiation and went to bed as soon as i got home and slept from 4pm till about 8pm every day.
Two weeks after my mom died we held her funeral. I gathered my energies, and pulled it together for all who attended. My wonderful wife read the eulogy to my Mom for me as i had no voice.
By the 5th week of radiation the skin burns on my neck really started to be a problem. The 6th and final week was uneventful except for the burns. By then all the miserable effects of the radiation where jockeying for top position as the most uncomfortable at the moment.
Keeping the burns clean and covered with Silvadene and xeroform did the trick and in a few days after the radiation the burns healed nicely.
The real surprise to me was that the radiation was over, and i wasn’t bouncing back. I spent my days sleeping hours on end with no energy and with all the symptoms i had during radiation, sore throat and all.
To me this phase is the toughest. Cause now you’re on your own, and you just don’t feel better, you’re still losing weight and you start to slip into a depression that you will never be the person you once were. I saw the doc yesterday for my 2 week post radiation check and i seem to be doing ‘well’ and my symptoms are ‘normal’.
I still feel lousy and have moments of depression. Luckily my wife is talking me through it and pushing me out of the hole i feel i’m in. The one improvement i see is that my voice is starting to come back a bit.
Well that’s all for now. I’ve lost 30 lbs as they predicted.
I think the mistake i made, is that i anticipated improvement following the end of radiation, and when i didn’t see it coming i started down a spiral.
God bless you all. I know that what i went through pales in comparison to some of your experiences.
Chapter 7 Treatments over. Now what?, 
9 comments)
08.16.08 - 
tpalombo 
Thanks for your support -
Hang in there! My prayers and positive thoughts your way for healing and strength!
I finished radiation Nov 2007. It took about 3 to 6 weeks before I really felt right again.Hang in there. The one side effect I still have is dry mouth. They tell me thats just one I will have to live with.
Hi Dennis,
Did you get IMRT radiation? Also did you get amaphostine injections? Just wondering. Thanks for your encouragement.
hey it’s great to hear from you. especially since my mother is going through the SAMETHING you already went through. it’s a long and tough road but as long as you have a support system thats what will keep your through this. shes going on her 6th week of treatment which is her last. i don’t think they were giving her any injections for the saliva glands. thats actually the first time i’m hearing about that. did you get a feeding tube?? my mom became a NPO. nothing by mouth even when she swollows water she chokes and it goes into her lungs. her pain meds are being managed through her G-tube as well. i would really like to talk to you. write me back when you get the chance.
Hi Rachel,
Tell your mom to just hang tough. You got to live in the moment. I was lucky that i didn’t get a feeding tube. My doc was against it cause he didn’t want me to lose the swallowing reflex. But i think they decide on a case by case basis. It’s now been almost a month since my last treatment and i am starting to feel almost alive again. Though i am still very tired and the dry mouth is a hassle. I just started eating soft solid foods for about a week now after weeks of living off of Ensure Plus. But my throat still hurts if foods aren’t super soft. Plus my taste buds are a bit out of whack where i have trouble tasting sweet.
The 3 weeks after radiation are the toughest i think. You don’t have the daily radiation to blame or to keep you busy. Just your own daily misery.
Thank you so much for writting me back. I wanted to ask you something. actually a few things if you don’t mind. did you do chemo too?? my mom only had to do 2 treatments of it but it was heavy dosages. also..shes been doing with chemo for 3 weeks now & shes still throwing up and can’t keep anything down her tube. did you have a hard time maintaining your weight b/c of being so sick. nothing the doctors are giving her for throwing up is working. they tried 3 different medicines already. shes very dehydrated as well. we’re stuck. we ONLY have 4 more treatments left! please write me back when you can. thanks
Hi Rachel,
I didn’t get chemo. But i did have a couple of weeks where i was throwing up all the time. One time i did have to go to the ER cause i was dehydrated. I couldn’t take the nausea pills cause i was throwing them up. So this is what helped.
I got a prescription for Compazine suppositories to fight the nausea. That controlled it enough so i could stop throwing up. Then i would just take baby sips of water every 10-15 min or so.
Also i would take Ativan (lorazipam) to keep calm and basically stayed in bed and fought the urge to throw up when ever it
came up. Usually when i got up i would get nauseous and then throw up. So by staying bed as much as possible and sleeping as much as possible to pass the hours i got out of that throw up reflex. I went for about 3 days almost without eating. Just taking sips of water. But if she really is dehydrated you need to tell the doc and bring her in.
All in all i lost 30lbs. She will do it.
Hang in there.
thank you so much for replying back to me. do you have AIM or anyway better to talk that would be easier? if not thats ok. she was 130 lbs like 21/2 weeks ago. now shes 112lbs! did you get that horrible burn? her skin is ripping open is horrible and looks soo painful. she takes the adivan but that doesnt seem to work as much. but i your right & it makes sense to stay in bed during this time. so far, shes been in the hospital twice for dehydration. she went in today just so they can hydrate her. such a horrible thing to go through!
Thanks for your comments. I am encouraged to know that you really are feeling a difference after 4 months. I guess we all fear the unknown, that’s why the prospect of the looming pet scan and what it will say is unsettling.
All the best to you and i will try and say positive:)