Rad/Chemo starts next week

swopoe

My husband is ready. I am scared. So where I left off was that my husband had stage 1 (T1N0M0) oral tongue cancer that had not spread to any lymph nodes. There was perinueral invasion so we were deciding between careful monitoring and further treatment. On Nov. 19th, we spent 9 hours at doctor's offices at MD Anderson and Memorial Hermann in Houston. It was such a long and overwhelming day.

Because of the PNI and my husband's age (41) and overall good health, it was decided that we would do 6 weeks of radiation (tongue and both sides of neck) and a weekly dose of cisplatin (40mg) as well. This is all on recommendation from MD Anderson. They believe there is a 70% chance he is fine right now. And they said they may be overtreating him. But they also said that 70% is not good enough. Our surgeon agrees. And ultimately with 3 young kids at home, my husband wants to have no regrets and do everything he can. So we are.

We were on vacation this Thanksgiving week (on a cruise actually that had been planned forever that we went on with the doctors' blessings). This coming week there are are a lot of prep appointments and then things will start. He has already been set up with a nutritionist, a swallow therapist, has a script for nausea meds and magic mouthwash, and the radiologist wants him to get a peg tube right away even if he doesn't use it for a while.

The docs all also told him to keep working for as long as he can, either in the office or from home (he is a geologist who works mainly on a computer, and his boss is supportive of whatever he wants to do work wise) because it will make him feel better mentally. On the cruise, my husband ate everything he could and gained 5 lbs. is there anything else we can do right now? Words of wisdom? I know to go back to the superthread. The docs all say he will be ok, but I am still scared. I just hate to think about my husband suffering or in pain.

CivilMatt

starting

swoope,

Start drinking water and swallowing.

Choose some music to play during rads.

Get the infusion chair next to restroom.

Keep your team informed on ANY & ALL changes.

Nice recliner and warm blanket.

Don’t try to tough things out, there are things you can do and you need all your energy for this fight!

Good luck,

Matt

swopoe

CivilMatt said:

starting

swoope,

Start drinking water and swallowing.

Choose some music to play during rads.

Get the infusion chair next to restroom.

Keep your team informed on ANY & ALL changes.

Nice recliner and warm blanket.

Don’t try to tough things out, there are things you can do and you need all your energy for this fight!

Good luck,

Matt

Thank you

so much, Matt. Great advice. We appreciate it so much. The docs say the time will go by fast. I hope so. 

MrsBD

Looking Ahead

Waiting to start is hard because there are so many unknowns. Once treatment begins, you'll just manage symptoms as they happen, if they happen. Not everyone experiences all of them, but you have informed yourselves which has helped you get prepared. Come here any time you need advice. You've already gotten good pointers from Matt and Bill. You are in excellent hands at MDA. I'll keep your family in my prayers. 

swopoe

Thanks Bill and Beth

for the words of wisdom. The baseball analogy of the grandslam was great, Bill. That made me feel so much better. My husband will be getting IV hydration 5 days a week (every day of radiation) so that should help. But I do also keep telling him to drink and keep swallowing as much as he can now.

He is at work now and feeling great, so that makes me happy too. Going to try and be as normal as we can for as long as we can and take things one day at a time. I am so glad I found this wonderful place. Thanks all.

the_wife

swopoe said:

Thanks Bill and Beth

for the words of wisdom. The baseball analogy of the grandslam was great, Bill. That made me feel so much better. My husband will be getting IV hydration 5 days a week (every day of radiation) so that should help. But I do also keep telling him to drink and keep swallowing as much as he can now.

He is at work now and feeling great, so that makes me happy too. Going to try and be as normal as we can for as long as we can and take things one day at a time. I am so glad I found this wonderful place. Thanks all.

You're in good hands

Yes - what everyone else said!

You're in good hands with MD Anderson. Can't really get any better than that, can you? Sounds like they are going to be very proactive with the daily infusions. I'm sure he'll be okay. My hubby had the same kind of chemoradiaiton protocol, but minus the daily infusions. I think that would have helped him avoid a lot of the setbacks he experienced.

I agree with Bill. As a caregiver you really have to take care of yourself. Easier said than done because you will be very busy taking care of him. When I was at the end of my rope, that's when hubby got neutropenic and was hospitalized. Of course I had to be there to make sure he was being taken care of, but "luckily" I got sick with a bad cold and had to stay away. I slept for about 2 or 3 days. My advise is to try to take a break and get a family member to help every now and then, if possible. Take a day off and go shopping or do something relaxing to get away. I was the primary caregiver and many days I almost fell over from exhaustion. So remember to take care of yourself. As a caregiver, you really have to be up to the task mentally and physically. Your moods will influence everything - I saw that when different nurses took care of my husband. There were bad ones that really messed up and he'd get upset and things went south quickly. Mostly there were good ones who made things go smoothly. You should have no issues. I'm sure that MDA has lots of resources and support - use them as much as you can. But you know him best and will get to know what works and what doesn't. You'll find that little things matter a lot. During chemo, my hubby liked to tune into the healing channel on the TV monitor in his room. It was very relaxing and soothing. He was very sensitive to noise, so we brought ear plugs everywhere. He also found Queas-Ease (for nausea) to be very useful and we made sure to bring it everywhere. Oh, and last but not least, be prepared for the emotional effects. I don't know if this is common or not, but my hubby was VERY emotional during his treatment. I think it was the chemo, either that or the steroids. No one told us about that.

As a caregiver, you'll be setting the stage for his journey. Be sure to dispense lots of hugs in addition to the meds. Touch is very healing. 

Best of luck to both of you!

 

wmc

What else do you need to do..............

Is set back and take a slow and deep breath. You have so much in your favor you will understand soon he will be fine. You can't get much better than MD Anderson. Being a T1;N0;M0, you can't ask for much more than, none. It was caught very early, and with such good numbers. He gained some weight which is good. MD Anderson is taking no chances and are going to blast it just like hitting a home run and bases loaded, we're talking a grandslam.

As for advice you have that covered as Matt covered it the best. just on a side note, the ones that listened  came through so much easier and better with a faster recovery. Swallow, sip, stay hydrated. The best part is you are not alone in this. Radiation can be rough. Now for you as a caregiver/spouse, this is harder on you at times them him. You fell his pain, even when there isn't any. Remember that you need to set aside an hour or two that is just for you. You will want to over do it and then you get rundown and at that point you can't help him. Yes your love can get in the way, in you overdo and get exhausted. I saw this first hand with my wife. I was in the hospital for 9 days and left at 10. She fell but would not say anything to me. She felt I had enough to deal with, loosing my voice and all. It was fractured at the heal and two years still hurts but is getting fixed. Yes I went through a lot and could not speak and cut from ear to ear. But I was doing fine and almost no pain for days. I really wish she would have said something, but she just didn't want me to worry about her. So, you both need to talk, and honestly how you feel and if you are scared. I would guess you both are which is ok. Just take one day at a time, and befor long it will be over. Recovery is mesured in weeks and months, not days or weeks. You both will be in my thoughts and prayers, and drink lots of water.........

Bill

swopoe

the_wife said:

You're in good hands

Yes - what everyone else said!

You're in good hands with MD Anderson. Can't really get any better than that, can you? Sounds like they are going to be very proactive with the daily infusions. I'm sure he'll be okay. My hubby had the same kind of chemoradiaiton protocol, but minus the daily infusions. I think that would have helped him avoid a lot of the setbacks he experienced.

I agree with Bill. As a caregiver you really have to take care of yourself. Easier said than done because you will be very busy taking care of him. When I was at the end of my rope, that's when hubby got neutropenic and was hospitalized. Of course I had to be there to make sure he was being taken care of, but "luckily" I got sick with a bad cold and had to stay away. I slept for about 2 or 3 days. My advise is to try to take a break and get a family member to help every now and then, if possible. Take a day off and go shopping or do something relaxing to get away. I was the primary caregiver and many days I almost fell over from exhaustion. So remember to take care of yourself. As a caregiver, you really have to be up to the task mentally and physically. Your moods will influence everything - I saw that when different nurses took care of my husband. There were bad ones that really messed up and he'd get upset and things went south quickly. Mostly there were good ones who made things go smoothly. You should have no issues. I'm sure that MDA has lots of resources and support - use them as much as you can. But you know him best and will get to know what works and what doesn't. You'll find that little things matter a lot. During chemo, my hubby liked to tune into the healing channel on the TV monitor in his room. It was very relaxing and soothing. He was very sensitive to noise, so we brought ear plugs everywhere. He also found Queas-Ease (for nausea) to be very useful and we made sure to bring it everywhere. Oh, and last but not least, be prepared for the emotional effects. I don't know if this is common or not, but my hubby was VERY emotional during his treatment. I think it was the chemo, either that or the steroids. No one told us about that.

As a caregiver, you'll be setting the stage for his journey. Be sure to dispense lots of hugs in addition to the meds. Touch is very healing. 

Best of luck to both of you!

 

Thank you

wife, I appreciate it. I came down with an ear infection this week. I tried to hide not feeling well from my husband, but he could tell. I felt worse than he did. he let me sleep early and sleep in late today so now I feel a bit better.

 

to update though, he had his rad simulation and mask fitting on Wed, and he did great. He is getting the peg tube put in today and rad/chemo starts on tuesday. This weekend, we are decorating our house for the holidays and getting our Christmas tree.

 

anyway, wish him luck, I hope he does ok. I love my husband so much. He has got to be ok.

Hondo

swopoe said:

Thank you

wife, I appreciate it. I came down with an ear infection this week. I tried to hide not feeling well from my husband, but he could tell. I felt worse than he did. he let me sleep early and sleep in late today so now I feel a bit better.

 

to update though, he had his rad simulation and mask fitting on Wed, and he did great. He is getting the peg tube put in today and rad/chemo starts on tuesday. This weekend, we are decorating our house for the holidays and getting our Christmas tree.

 

anyway, wish him luck, I hope he does ok. I love my husband so much. He has got to be ok.

Hi swopoe

 

I can’t say enough about Caregivers, I know in all my treatments my wife caregiver was right there by my side and if it was not for her giving me support I would have never made it, because I am too week to do it alone. No wonder that God said the two of them shell become one flesh

 

Keeping you both in prayer

Tim

Barbaraek

I'll be thinking of you and your husband

as you work your way through the treatments. I had a countdown and took great delight in counting down the days. I was on this message board A LOT. I maintained a journal on a site called Caring bridge (www.caringbridge.org) so that friends and family could see how we were doing and I didn't have to expend too much energy calling everyone with updates. When people asked what could they do, I let them fix us soups (even if my husband couldn't eat it, I could...and fixing meals was one less thing to worry about).

Try to rest when your husband rests. Have a good book to read during the infusions or something to keep your busy - I crocheted, quilted, did crosswords, brought my budget up to date, etc. Bring something from home to the infusion clinic - a blanket or pillow to make it comfy.

If he gets radiation burns - we found Silvadene cream to be very effective in healing open, weepy areas. Other areas did well with the Aquaphor.

Try to find the siliver linings whenever you can and find something to be grateful for each day.

Bless you both,

Barbara