We met with all the doctors at Cleveland Clinic yesterday. The game plan is for Ken to get his simulation, blood work, etc. next week, and then begin treatment on Oct. 25. He will be in the hospital for the first 5 days, chemo and radiation simultaneously, followed by 6 more weeks of radiation, with another week of chemo somewhere in there. His radiology oncologist doesn't feel IMRT is appropriate due to the size of the tumor and the lymph node involvement--says he thinks there would be too big a risk of reoccurrence. The Clinic is 90 minutes from us, a lot of driving, I know, but I am more than willing. The doctors say the last half of treatment, he might want to stay at Hope Lodge (a facility for cancer-treatment patients) as they don't think he will be able to do the 90 minute drives. For some reason, this is bothering him more than anything else. Anyone have any experience with this?
(No teeth are being pulled--thanks for the good advice!)
Wish us luck...

Hello, Sherry.
My husband will have his last radiation treatment on the day your husband begins. The plan structures are different (Tom had 2 rounds of chemo, then began the daily radiation with 2 additional rounds of chemo included. He has had 4 weeks of IMRT as well as 2 weeks of field radiation for his Stage IV tonsillar cancer (T1N2b).
We are down to the home stretch. As all our friends on this board let me know, the first few weeks were unpleasant, but bearable. Since his last chemo, however, things have been most difficult and the 90-minute drive to UVA is feeling like torture. He's constantly nauseous and we go nowhere without being prepared. I have discussed with him the idea of just staying in Charlottesville for this last week - he has to go in for 4 hour fluid infusions each day, as well - but he is resisting. He wants to be in his own bed. He sleeps most of the drive down, and always sleeps the entire drive home.

I am, as you say, more than willing to make the trip, but it becomes mind-numbing day after day.
I have had some relief with family and friends driving, but I really hate having them spend an entire day down there. I may see about staying down there most of next week.......

Sherry, I wish you both the very best of luck with this new fight. Please keep me posted on his progress. I'll be thinking of you every day and remembering you both in my prayers.
Nicki

Thanks for your reply, Nicki. Sounds like we are in very similar boats, with mine several weeks behind yours. Ken's objection, too, is that he wants to come home at night to sleep in his own bed. Since his chemo will be done entirely in-hospital, with traveling occuring just during the radiation-only weeks, it may be manageable. We will just have to wait and see. I have family (out of state) who have offered to come stay to help out. Unfortunately, my father is ill right now, and I can't call on them, because they have to be there to help him and my mother. My son is a senior in high school, and fairly self-sufficient, and that helps, but I am starting to worry about the logistics of all this. I think I need to take it a day at a time. Thinking too far ahead will just drive me nuts!

Hi Dolores,
I travelled to Boston for my radiation treatments from western Vermont. It was a 3 1/2 hour drive so I decided to stay in Boston during the radiation treatments. In retrospect, I probably could have driven back and forth myself for the first 3 weeks but once the effects of the radiation started to build, I was very grateful to be living in Boston close to Mass General. I still went home for the weekends until the end of week 5 when I couldn't do much but stare at the ceiling.

I'd suggest making the arrangements to stay in Cleveland now, so you won't have to hassle with it later and then let Ken decide whether or not he's up to the travel. I assume you can always cancel reservations.
Best wishes for a successful treatment. - Sheldon

Hey Sherry,
Prayers are going up for you and Ken. This is such a hard thing to go thru. Like you, my mom was also ill during Dan's treatment and it was so hard seeing Dan so sick and knowing I couldn't be helpful to my mom at the time. Hope you have a great support system in place. We only made it thru with our faith in God to walk with us and also a group of bible study folks that we relied on heavily at times.

It's a long road, but there is light at the end of the tunnel.
Take care,
Debbie

Hi Sherry,
I will add you and Ken to our churches prayer list tomorrow. Remember, knowledge is power.
Learn everything you can about his treatment.
Take care,
Minnie

Hi Sherry! I wish you both well in the coming months. Keep yer chin up & don't look back. It is a day by day & minute by minute process. Go easy on Ken & take time for you once in a while. The first week of treatment I had an apartment in Seattle, but I wanted to be home so we gave it up & I drove back & forth to Seattle by myself. I got rides from family & friends the last week of radiation. Everybody thought I was nuts & maybe I am, but thats what makes me me! There are puke stains on the car deck of the Bainbridge to Seattle ferry run to this day I'm sure of it! HaHa! At least I can laugh about it now & someday you guys will to! Keep us posted.

Sherry:
Everyone is different and I am not a medical professional, but, I have been through both radiation and Chemotherapy simultaneously. We live 97 miles from the treatment facility we used in Memphis, Tn. and traveled up and back daily for 40 days. I had radiation daily and chemo on Fridays and never needed to stay overnight. Just take one day at a time and deal with adversity as necessary.
Good Luck:
Darrell

Sherry, as Darrell said, we are all different in how we deal with this treatment. I drove myself to and from rad treatments which were over an hour away except for when I had the chemo every 21 days. They checked me into the hospital for that on a Thursday and I went home Saturday or Sunday. Then started rad again on Monday. I also didn't use any pain meds as I was still working, which required me to drive around. Didn't want to fall asleep at the wheel so didn't take meds until I got home at night.

I tried to stay at Hope Lodge toward the end of my treatment, but they were very strict about caregivers attending the orientation session. As my wife works, she couldn't attend and they wouldn't let her stay with me. So I left as I wanted to be with her, not staying overnight away from her. So if you go, make sure you both can attend the orientation so you can stay together. It would have been very nice to stay there if it wasn't for the strict rules. Good luck and will add you all to my prayer list.

Sherry,

Sorry you and yours are traveling the so familiar road. It seems like yesterday Nicki was where you are with her Tom. Just like all of us, there will be some good days and some bad days but overall the experience will be more positive because it is the best option for beating the beast!

All these people and you sound like such warriors. I remember the radiation oncologist asking me if I really wanted to travel "this far" for treatment. It was a 45 minute drive and he was so concerned that the travel would be too rough for me. I had many options here in Dallas but heard he was the absolute best for radiation and head and neck cancer so I went there. Through the treatment I thought the big shoe was about to drop because it didn't really seem that bad, overall. I had a strange reaction to Ethyol (used to protect the salivary glands) and a brutal reaction to dexamethasone. I keep hearing this silly story about me opening the car door at 60 mph to spit the horrible brown goo out. I sure thought it was no big deal but after hearing the story so many times a year later, maybe it was the drugs!

You have found the right place for support, warmth, support, kindness, support, love, support...

Glad to have you here and ask any questions and somebody will be able to answer them.

Good luck on the journey.

Ed