jacquesusa's Cancer Blog
August 17, 2008
| Chapter 9 Two steps forward. One step back. | Views: 1979 |
I have a little photo montage of the radiation you can look at: http://web.mac.com/jacques_usa/
Sunday Aug 17th. Almost 2 1/2 months since my last radiation on June 4 2008.
I was finally starting to feel better that i was able to do some light yard work on weekend 3 weeks ago. I didn’t overdo it but if felt great to be able to be outside and look at a task and complete it, where normally doing anything remotely physical seems overwhelming due to the ever present exhaustion.
In the days after my physical activity i started feeling exhausted again and actually felt i was getting worse. I started to resume my afternoon naps and even had a low grade fever. So l went to the doc, had a big blood work up and went on antibiotics 10 days ago. Apparently i picked up some bug due to my low resistance. Now i am starting to feel better again but have come to realize that this ‘road to recovery’ is a long and slow one. I am able to work, which is basically working in front of a computer, but the physical stuff still seems out of reach. The most frustrating part at this stage is that i am so ‘tired of feeling tired’ all the time. I just have to be patient and listen to my body.
Meanwhile looming in the back of my mind is the first checkup PET scan since my radiation which is scheduled for October.
There is so much i want to do and i feel like i have to wait on the sidelines for my body to catch up. But that’s my life and i have to remind my self how grateful and fortunate i am that things are as good as they are.
My taste buds are definitely back and improved a lot. I can taste sweet again and more things taste like they should for the most part. Wine is still like battery acid though. When it comes to solid oods they really need to be soupy as i have terrible dry mouth. Bread is the worst as it acts like a sponge and sucks up any moisture in my mouth.
Sliced peaches in syrup are great cause it’s real soothing and leaves my mouth feeling moist. Milk or Rice Milk is great too as is smooth peanut butter like Skippy.
I’m holding at 151lbs down from about 185lbs before the radiation.
It’s a beautiful day today, so i think i’ll try and muster up some energy and go for a drive with my wife in my CJ7 jeep with the doors and top off and feel the summer air.
Carpe Diem!
Chapter 9 Two steps forward. One step back., 
24 comments)
tpalombo 
Thanks for your support -
Hi, Jacques:
I enjoyed reading your post. You have lots of info. that I’m sure people can benefit from. My taste buds were whacky because everything tasted too salty. I was constantly saying, “Wow, does this taste salty to you?” No problems with sweets unfortunately. Now why couldn’t I have lost 30 pounds? It’s not fair!
I finished chemo in February and radiation in April. Just thought I’d let you know that even though I felt like I was getting my strength back around June——I wasn’t really up to par yet. Now, four months after treatment, I am really feeling energetic. So hang in there and things will get back to normal. Don’t worry about that cat scan; just remember that’s routine and everyone has to have one regularly for awhile. Take care and be patient….. :)
Wonderful to read such an upbeat post!
Good for you, glad to hear your getting back to “normal”
Blessings
Mac
Dear Jacques; Somehow I missed your first post so I have become a supporter due to your last entry responding to Jill’s announcement of the death of a media man Robert Siegel. If you really think about it. You have had major surgery, radiation and mind full of anxiousness. Why wouldn’t you be tired? It takes a good year to recover properly. I used to wonder why I would just creep upstairs and have an afternoon rest. Well it was my body telling me to just cool it and spread out the day. I actually look forward to that time when no sound of lawnmowers, buzz saws seem to be playing it’s ugly toons. We all wish you good luck in the upcoming scan. I too am looking forward to mammo & ultra sound in Sept. and full body bone scan and ct in Nov. It never stops and it probably won’t due to the nature of cancer itself. With all these diagnostic tests you would think that a cure would be here by now. It is the scientists that need the money and one miracle piece to the puzzle. Let’s just hope it comes soon enough for us all. Good luck and keep us posted. Now that I am a supporter of yours I will get your postings sent to my email in box. Keep up the good fight. Weezie
I hope you enjoyed the Jeep ride and the beautiful day. You are my inspiration and hope as I struggle with the lack of energy and taste bud issues. I can totally relate to your comment “I’m tired of being sick and tired”. Some days the recovery seems endless. However, your posting are very encouraging. Good luck with your PET. Thanks for the inspiration and God Bless.
Hey Toby,
I’m glad that my posts are helpful to you. All i can tell you is that i really thought i too would be further along in my physical recovery. I read from someone else’s blog that it took them a solid 4 months to feel energetic again. For me, i tried to find little work arounds.
I know that i am useless as the day progresses to the afternoon. So i feel more able to face physical stuff in the mornings. I don’t get that much done, but even a few minutes is inspiring and brings you hope.
Also with the taste buds i definitely see the improvement. Try mild foods you can tolerate best, and then keep eating it everyday until it tastes right. When i couldn’t taste sweet, i started drinking sweet tea, which was loaded with sugar syrup. At first it just tasted like tea and didn’t taste bad, but it wasn’t sweet to me at all. Then day by day, i started to recognize the sweetness and it came back over a couple of weeks. Canned peaches were kinda the same way, but as i kept focusing on them they got better and now taste delicious again. I’m still struggling with fresh fruit. Strawberries are too tart as are fresh peaches. But i will force my self to just take a bite of fresh strawberries everyday. Slowly i they are becoming passable. I guess a few more weeks and they will be where they should be.
Just listen to your body. If you feel good, go for it and do something uplifting to you. If you’re exhausted take a nap.
Don’t over stress it and count your blessings. You are getting better, and you definitely could be a lot worse off. I’m sure you’ve met some of those people when you went for your radiation, or read some of the blogs on this site.
Keep in touch. Hang in there and focus on the progress your making. Meanwhile i’m exhausted so i’m going to bed :)
Hey Jacques, I finally had a good day yesterday. Hopped on my ATV and enjoyed the nice weather. Last was not great. And so far this morning seems good. Evenings always seem tough. I still have alot of flem to deal with. But, thanks again for words of encouragement. Toby
Toby, that’s great to hear. Focus on the little positives along the way. I’m feeling noticeably better after finishing my antibiotics. I had picked up some bug that had set me back. The main thing is listen to your body. If you feel up to doing something try to do it for however long you can do it. Then when you feel like a nap go for it as well.
Regarding my taste buds they keep improving. Back to about 95%. My voice is also getting stronger. Still a bit raspy. My saliva or lack of it, is an ongoing problem where my mouth is always dry. I haven’t had a single Ensure in a week! Been living on ‘solid food’. Stew, pasta with plenty of sauce, and still pretty soft stuff. Every bite is followed by a sip of milk or juice to get it down.
I don’t know what is in store in the long run, but i am focusing on the small improvements that are taking place. All any of us have is the now, the present. So savor the gifts in front of you :)
Hi Jacques, I am new to this site and was curious about your saying “tired of being tired”, I haven’t started radiation yet, it will start next Tuesday, I don’t know if the type of cancer matters either as far as radiation goes, I have ethesioneuroblastoma. But I’m already tired. I really hope your energy level improves. I also sit in front of a computor for work and am working, but I am a wife and mother and I havn’t been my normal self in awhile….my husband says the same thing that you wrote, “be patient and listen to your body”.
Hi Melanie,
I wish you the best for your upcoming radiation treatment.
We each have our own way of handling, it. The fatigue you are experiencing may be part of the sensation of being overwhelmed by the the whole concept of your upcoming treatment.
One thing that is important is to feel like you are moving forward. I had a calendar that i came home to every afternoon after my radiation, and X’d out the day. That was helpful knowing there was progress an end date. By the second week everything becomes a blur and I took as many medication cocktails as was necessary to combat my nausea, throat pain and feelings of depression.
Make your peace with your soul. Get close to God. Treat your self to a fabulous dinner with your family this weekend because it will be the last good one for several months. Take a deep breath and prepare for battle. You will get through this!
By the way i am feeling dramatically stronger and better the past week and a half. (almost 3 months after the end of my radiation)
Hello Jacques,
You truly have amazing strenth and courage. I am always interested in reading how others affected with “C”, what gives them their coping skills. I have learned to put all my faith in GOD.
Patty :-)
Good Morning Jacques
Things have been going quite well for me. My taste buds seems to be back, swallowing still isn’t where it needs to be. My energy levels are getting alot better. My hair in the back of my neck still hasn’t done much. and my beard is getting some patches of growth. How is your hair and beard growth going. Are you eating breads and steaks yet?
Hey Toby,
Great to hear your starting to feel better. Sept 4 was my 3 month end radiation anniversary. My beard is pretty patchy. My mustache and chin are coming back stronger and sideburns as well. Nothing for my face or neck area which ain’t all bad. I feel like i was when i was 16! By the way don’t know if i mentioned this before. But get a jar or pure ‘virgin coconut oil’ You could use it for cooking if you wanted to. But if you heat it for 30 seconds it melts to a liquid and you put a few drops along your scar and work it in to your skin and it is a miracle skin moisturizer. It’s like nothing i’ve ever had before. Btw. I’m not the moisturizing kinda-a-guy, but it works wonders to heal your skin.
I still have real bad dry mouth. Live with a bottle of water, and down a couple of those lunch packs of diced peaches and syrup and that is real soothing.
No bread, unless it’s like peta cause it’s like a sponge and soaks up everything in my mouth. I”ve been on all solid food now for a couple of weeks but i am focusing on really saucy stuff. If you llike tomato sauce pour in on and drown your pasta. Had some soft stew, but not ready for steak yet. Also pour some olive oil on everything you can. It really makes a difference. It helps the food slide down. Go with your gut and w if you feel like pushing it go for it but otherwise just get used to the foods you like and work for you.
Two things i still can’t do. Beer or wine is just too strong for my taste buds. Tonight i trued some beer with water mixed in and it actually worked it was passable.
Hang in there bud. You’re getting there!
Hey Jacques,
It’s great to hear how awesome your doing. You still inspire me. Thanks for all the eating tips. They really help. I had a sip of wine it was really good. I don’t think I’m ready for a full glass yet. The other weird thing is the since my lymph nodes were damaged by the radiation, the fluid is collecting under my chin. Are you experiencing that also? Doctor said it go away in about six months. I really appreciate your help through this incredible time.
You’re welcome Toby. When it comes to the fluid, yeah, i have a bit of swelling under my chin on the side of scar, in the area above the scar. It’s fluid build up since they removed the nodes. I’m told to that with time it will pass. Get that pure coconut oil, melt it, and work it into your skin. It really helps. The more you gently touch that scar area and massage it, the less weird it will feel. And for me it almost feels like the nerve connections are back to normal. Also stretch your neck by turning your head to pull on the scar. You really want to keep stretching that area out or you’ll end up loosing the flexibility and you’ll walk with your head tilted towards your scar which is not very good body posture :)
And i still can’t have a f**’ing drink yet, unless it has lots of water. I’m sure i’ll get there in a few weeks :)
Keep fighting and look for the little signs of improvement wherever you find them!
Hi Jacques. My name is Heidi and I had the exact same cancer as you as well as the same treatments. I think you have posted a comment on my blog before. I just want to let you know that over the first year, salivary function continues to improve. For me, it seemed to get better for about the first 3 months after radiation ended, and then the improvement plateaued for a while. I have really noticed in the last couple of months, though, that improvement is still happening. Except for the dry mouth and numbness in my neck from the surgery, I think I am almost back to completely normal. But, I do carry a small sample size of dry-mouth mouthwash in my purse (I think both Oasis and Biotene are good). I rinse my mouth out after every meal, even in restuarants. I just go in the ladies room and rinse. It really, really helps.
Hope your scan goes well. I think my next scan will be in November. I have to have blood workup next Monday. Please let us know how it goes for you.
Jacques; Since you are not a moisturizer kind of guy! where does one purchase virgin coconut oil? Health food store? Never heard of it. Is it like a chunk of coconut that when heated it melts. I would like it for my whole face – why not? Secondly does Toby have his own weblog or is he a visitor. It might help if he joined so he could be part of the larger group, even though I like your buddy system so far. I can’t imagine not being able to have a drink or glass of wine. That has seen me through many a down time actually. It is the one thing that is a treat for me. Just shows you how powerful the radiation is, and what it’s side effects can leave a person enduring. Anyway as I said above welcome to the world of friends that won’t let you down. Weezie
Hi Weezie,
Where does one get the oil? I get it from the bathroom cabinet. But upon further research my wife tells me she found it on line at:
http://www.tropicaltraditions.com/virgin_coconut_oil.htm
She bought me the “Gold Label Virgin Coconut Oil
Certified Organic”. It’s $19.95 for a 16oz bottle. Apparently it’s meant for cooking but, i’ve been using it on my face and it truly is incredible. You put the jar without the metal top in the microwave for about 45 seconds and it turns to a liquid. Then you just dip your finger in the jar to get a drop or two and work it in. It absorbs into your face like nothing i’ve ever seen before.
Give it a try and let me know what you think :)
Btw. I believe Toby is just a visitor cause i don’t see a profile for him.
Dear Jacques; Thanks for that info on the c.o. Really want to try it since my face feels so dry since doing the radiation, and that was a year ago. Beats the facials that cost well let’s put it this way, I could go out for a nice dinner for what they charge. By the way I wanted to share with you this part of Oprah’s website. Just played the entire interview so if you have some time you might find this very interesting.
http://www.oprah.com/article/spirit/inspiration/ pkgoprahssoulserieswebcast/20080512_oaf_oss_jboltetaylor
Let me know what you think? Weezie
Hi Weezie,
Don’t mean to mix cancer and politics, but Oprah is off my list since she banned Sarah Palin from her show! And Obama calling Sarah a “Pig” today is just going too far!
Good Morning Jacques,
Hope you are continuing to improve. I had a PET scan last week. It was really good news. The tumor is completely gone and no sign of cancer. The doctor did an exam with the scope down my nostril and looked around the tonsil area and said the tissue looks really healthy. He did say that these side effects should continue for a few months and up to 1 year. My throat continues to be very irritated and fluid continues to build under my chin. The hair in my neck area is finally starting to grow very slowly. All in all, I’m very thankful for the results. And thanks again for all your help and encouragement. Toby
Hi Toby,
Congrats on the PET Scan. Mine is coming up on Oct 27. It’s mildly worrisome to wait for the results. Otherwise I’m doing much better as well. I feel dramatically better in the past two weeks. Eating all solid food, though my mouth is still dry. I’m getting used to taking a bite and a sip of something to get the food down. But energywise i finally feel strong enough to want to do stuff. The throat is also starting to feel less irritated so i guess that’s a good sign.
Hang in there you’re tougher than you think!
Hi there guy> I had to click down to make a comment. Just want to say hi. It has been a while, what have you been up to? Let us know.
Hug to you and yours
Sherri
hey..how’ve u been???