jacquesusa's Cancer Blog
July 12, 2008
| Chapter 8 Bouncing back. | Views: 834 |
My last radiation blast was on June 4th 2008. Today is July 12th. It took a full month for me to start feeling like i was getting better. For the 4 weeks after radiation i had no energy, took long naps, and lived on a liquid diet of Ensure plus as i have for the past two months. Vanilla or chocolate are the only two flavors that are tolerable. About 3 weeks after i was done my voice slowly started coming back. It’s still a bit gravely. For about a week now, i’ve been starting to eat soft solid food, like peas, mashed potatoes, fish, oatmeal, scrambled eggs. As i have very little saliva in my mouth and even less in the back of my throat it is dry all the time and anything remotely hard like toast or even hamburger will hurt. I still on occasion numb out my mouth with a lidocaine syrup before eating to help food go down easier.
A week ago i stopped taking naps and a couple of days ago i even took a dip in a pool. Today i went for a drive in my jeep as the weather was nice. Anything physical like mowing the lawn sucks the energy right out of me and makes me see how far i still have to go.
But finally i do feel good for a little while at a time and can almost feel the old me inside again. I am still down 30lbs and haven’t regained any of it. My taste buds are pretty much out of whack. Up until a week ago i couldn’t taste anything sweet. It was jut plain bitter. Now sweet tea has a hint of sweetness! So things are getting better.
I can see that the longest recovery is going to be my salivary glands which i understand could take a year to come back to whatever is left of them.
In about 2 weeks i go back for a check up and my first Pet Scan is in about a month which will be the first drum roll to see if anything new has shown up.
God bless you all.
08.16.08 - 
tpalombo 
Thanks for your support -
I am so thankful that you are slowing improving. It does take a while.
My thoughts and prayers are with you always.
Joyce
I am so happy that your doing well. keep up the positive attitude! lots of love- rachel
Good luck and hang in there. It’s all gonna work out in your favor.
Did they ever test the primary tumor for HPV? I’m wondering, since you’re somewhat young, if it might have been related to an HPV infection.
They never found a primary. The squamous cell cancer in my lymph nodes was the secondary. Apparently this combo of unknown primaries happens. So HPV never came up. Thanks
So very happy to know that things are improving. Hang in there!
Theresa C.
Jacques,
You have really had a terrible ordeal to endure since April, 2007. Believe me, I can understand. The death of the people you love (even your dog) hurts so much and to have it happen during treatment is an additional hard blow. When you look back you wonder “how on earth did I make it through all that” but somehow by the grace of God you stumble through. I am thankful to be alive and as well as I am. If I can lift up a few people along the way, then maybe it will all be worthwhile.
Hang in there, my friend, and I pray you will get a little stronger each day and that your PET SCAN will be good new.
My thoughts and prayers will be with you.
Hugs,
Joyce
hey..how are you doing? my mother wanted me to come on here and ask you a few questions. she wanted to know if your ears ever bothered you, or if you had oral thrush before? those 2 things she cant seem to get rid of. thanks =)
Didn’t get the oral thrush, but sure felt like it. It takes several weeks for the mouth sores to heal. The best thing is to make sure she washes her mouth and rinses with hi fluoride mouth wash and brush with hi fluoride prescription tooth paste if possible. Teeth are very susceptible to cavities and infection after the radiation, because the saliva isn’t there to protect your teeth. so be very vigilant about mouth care. It will get better slowly over the weeks.
Not sure what you mean by ears bothering me, but write to me on my email jacques_usa@mac.com
hey it’s rachel.. i sent you an email. hope your doing well =)
Thanks for all the useful information. I was also diagnosed in February 2008 (had my tonsillectomy on the 14th) and have just completed my treatments. It’s been three weeks since my last treatment and I sure am tired all the time. I’m still taking nutrition through my PEG tube, though I’m a vanilla and strawberry Boost guy. I also have excessive saliva rather that dry mouth. I’ve been keeping at journal at Caring Bridge if you would like to check it out: http://www.caringbridge.org/visit/tobylovato
Good to read that your well on your way to recovery!
I have a question. Did your facial hair grow back and also did the hair on the back of your head grow back. My facial hair lower part of the beard appears to be gone and not growing. Same thing with about two inch in the lower back of my head, the hair is not growing. Thanks in advance for the info.
If finished radiation June 4th. Today is Aug 14. 2moths and 10 days. The hair on most of my face and neck is gone and ain’t coming back. I have hair coming back and growing stronger where now i have to shave it every couple of days on the the front of my chin below my lower lip and on the mustache area of my upper lip.
The back of my neck is starting to improve also somewhat though the neck line is still higher than i would like it.
Thanks of the response. And glad your doing well. I’m on my fourth week since last radiation treatment. Still feeling lousy and lots of spit. You certainly give me hope. Thanks again
You have probably another 2 weeks before you start to feel like yourself for small bits of time. Don’t push it. Listen to your body.
I’m just bouncing back from a low grade fever where i caught some bug cause my resistance is low. My spit is actually to dry now but it will take a year to get to where it will be at it’s best.
Hang in there :)
Sorry to bother you again. One question when did your taste buds start working?
Hey Toby,
No bother at all. My taste buds really started coming back over the last month. It’s not all there yet but it mostly is. Fruit tastes right again. Canned sliced peaches in syrup really helped the sweet sensation come back and is soothing to my mouth and throat. I still don’t drink. Beer if it’s a bud is sorta ok but the bubbles still feel strong. Any lager is too strong. And forget about wine! Red wine tastes like vinegar. But i expect it will come back in the next few months. My saliva is still the biggest problem as my lack of it makes solid food real tough to go down. So soupy foods, and plenty of milk with every bite and definitely no bread, as that sucks up any moisture i have in my mouth and it makes it worse.
I don’t know if it helped, but when foods didn’t taste right i kept remembering how they DID taste and tried to convince my brain to rediscover that sensation :) Hope it helps!