Just getting used to the idea of being a survivor. The recent posting with the Carnation VHC recipes and "David's story" brought back memories of just how overwhelming the initial diagnosis and subsequent treatments were. Worse was the waiting time for each radiation treatment as the Georgetown University Lombardi Cancer Center only had one machine on line and my 4 pm appointment usually did not happen until 5:20 or even 6 pm each time. Very frustrating to all the users not to mention being caught in the height of rush hour driving home. (or actually being driven home by my wife).
As my signature indicates, I went with Erbitux and IMRT option. I was blessed in multiple ways: first and foremost a Wonderful dedicated caregiver, my wife. Second, major prayer groups from work and life who all prayed for me. Third, a job that let me work at home for the duration and then take an early retirement once finished. Fourth, comprehensive health insurance which paid for the over $250,000 in medical bills (except for my "catastrophic" payment of $4,000) Fifth, dedicated doctors from the ENT surgeon who took over my case once the CAT scan indicated cancer to the oncology and radiology doctors at the Lombardi CCC Center who were not afraid of providing adequate pain relief pills and patches.
I know that with than 4 months after treatment that medically I am not "cured" nor even out of the woods (no PET scan yet since the docs all felt too many false positives this early on) but the one MRI was all clear. What is worrisome is the uncertainty of how long the lack of taste will last, how much saliva will come back, how long do I need to do these jaw exercises to keep the trismus at bay and the realization that I will need to use flouride trays for the rest of my life and always have a water bottle. On the bright side, I am now wearing 32 inch waist jeans just like in college, having lost 35 pounds and 4 inches off the waistline and only have to shave a third of my face and none of my neck. (yeah, I was one of the stubborn No PEG holdouts who is still unrepentant since at all times my bmi was within acceptable parameters of healthy) The weightlifting at the gym is only back 70% but I can finish the full yoga and pilates hour long classes again. While I know everyone is different, it is good to hear about others' journey back to wellness.
Peace and Love
Tom

Tom,

You're a survivor in all ways so be proud of what you have accomplished.

As far as your side effects, your dry mouth and taste and dependence on water will likely improve drastically from where it is now but it will take well over a year to do that. Most of us are resigned to wear the molds for the rest of our life but I'm sure you will agree that's a minor inconvenience. Your strength and endurance will improve as your body heals and I even felt I was a better rider post Tx despite the addition of a year to my age. Just be patient and don't expect to recover as if you had the flu. I am going on 19 months post Tx and I noticed an improvement in dry mouth and taste just 2 months ago and even though I would be satisfied it didn't improve further, I hope I see more improvements.

David
Thank you for the welcoming reply and reassurance. My ENT visit yesterday went great and nothing amiss with her manipulation and prodding of my lymph nodes. The only other symptom I have is that I am always cold. However my wife thinks that finally my temperature is normal as she was always concerned about my son and I wearing shorts in the winter and shoveling snow in T-shirts. Anyway, I'll post that issue later in the appropriate forum. I loved your self description of "exercise nut" as I did 4 marathons (best time 3:15), lots of 10ks until my knees gave out. Pre DX and TX, I spent an hour each day lifting weights or doing aerobics in addition to pilates and yoga and just thought of myself as keeping in shape. Good to hear that stamina and strength return, even if saliva doesn't always.
Thanks
tom

Tom,

I too was constantly cold for months post Tx. I surmised it was due to the weight loss? It passed like a million other things that come and go with our recovery.

Hi tom

I started on a weight loss programme last week that consists of 100 days abstinence from food and a meal replacement regime.everyone here knows i muchi complained about robin feeling cold and needing the heating on all the time,and one week into my programme and not having eaten any solid food for 8 days,my worst side effect is......i am cold all the time.The counsellor explained that the taking in sugar and carbohydrate,makes the body produce heat,hence why i get hot if i eat a big meal,and as the body doesn't have a lot of these to metabolise,then no heat is produced so we feel cold.
I understand a bit better how rob felt now when he wasn't eating.
liz

Liz, this sounds like an extremely radical diet, what's up? I also note that you say 'the counselor', I trust this is a Medical Doctor supervising such a regimen?

love, Lois

Hi lois
whats up is my weight hon.Since Rob died i have eaten myself in to a 21 stone blob,and i was not feeling brilliant.Rob would be ashamed of me.I have started the lighter life programme and yes it is under medical supervision.The counsellor is a cognitive therapist who the group of us have a session with for two hours a week.The plan means total abstinence from food for 100 days.I get four meal packs of 123 calories each which contain all my nutritional needs for the day,and i have to drink 4 litres of water a day.Its tough but it will be worth it if i can do the seat belt up on the plane when i go back to Abu Dhabi in November.I am 8 days in and i have lost 13lbs.

love liz

Hi Tom,
Welcome..you have now become a member of a very exclusive club!! (I know it was not the one you've always wanted to join)
Sounds like you are very upbeat and as you said, stubborn, not going to let this slow you down. Good for you!!
You will find all kinds of great and informative information about almost anything you can think of relating to OC on this site if you take the time to read current and past threads.
Any time you post many of the wonderful people here will give you advice, opinion and experience. So post away.
Now the nuts and bolts...and my opinion.
The exercises to prevent trismus. You will need to do them until you have strengthened the muscles and your range of motion (ROM) in your jaw returns to or close to normal. Trismus is like a muscle spasm that can be very painful in some individuals. It becomes more frequent when a muscle is injured or works beyond what it is capable of. Like going to the gym the more you strengthen the muscles of your jaw and neck the less trismus you should experience.
Taste. This depends on the individual and how much tissue was removed if you had surgery and as well how much damage the radiation did to the remaining taste buds. It should get better over time and sometimes will return all most completely.
I'm glad you mentioned the water, keep hydrated.
Fluoride trays will help protect your teeth now that your saliva flow is impaired. There is a current thread in the "After Treatment Issues", that discusses this issue and would be an informative read for you.
I am a little bit concerned about your weight loss. Do you consult a dietician/nutritionist? BMI is not always a good indicator of the health a person is in. The lack of a PEG tube doesn't concern me but, I want you to make sure that you are getting the proper amount of nutrition (vitamins, minerals etc.) to support your immune system, healing and your level of activity. I am impressed that you are perservering and exercising, really your level of activity is quite impressive. I'd love to have the 32 inch waist back too!
My prayers are with you in your healing process.
If I can be of any help let me know.
Cheers,
Mike