My new adventures...round 2

Options
stevenpepe
stevenpepe Member Posts: 234
edited November 2016 in Head and Neck Cancer #1

Hello fellow cancer survivors,

So, here I am, in an extended stay hotel in beautiful Somerset NJ, beginning a second round of radiation, this time with chemo. I will be here mostly weekdays until early January, right through 3 major holidays. My goal is to drive the 100 miles back home for the weekends, depending on how I feel. I am down here alone, and it sucks. But, I know it will go quick.

Today was treatment 1 so there's little to report. They are focusing on my neck, just below my jaw line on the right side. I'm hoping to avoid many of the effects from the first round, although I'm told I may experience throat issues again, something I don't need since eating is still a chore.

I believe I belong to a special club of patients who have had both IMRT and Proton radiation. Lucky me! Anyone with questions, feel free to ask. I really didn't want to be an expert at this. But, you gotta be good at something.

The facility is beautiful here at ProCure. Staff is great and the treatment is similar in protocol and time. Ten minutes in a mask. One difference is the machine type and how the staff uses it. I can't see out of my mask and I like it that way. Watching the radiation arm spin around your head knowing it was frying me, was quite daunting. This machine is treating me from the side, so there is little movement. It's frying me just the same.

Eating has been difficult since my last surgery. My jaw is limited in range and I just can't seem to get my appetite back. I do eat, but in smaller portions. I have lost about 20 lbs of my pre cancer weight. I'm back to my high school weight, which is fine, but I cannot lose anymore. I have almost no fat on my body and I was always on the thin side to begin with. There is no way I'm doing a PEG tube. If I have to swallow Ensure every day again, that's what I'll do. I'm so tired of being cut and stuck all the time.

Since the second surgery, I can no longer sleep through the night. Two to three hours and I'm awake. Going back to sleep is a struggle. Suddenly, my resting heart rate is slightly over 100 now. Had an EKG last week but never heard back from the docs. I'm wondering if my thyroid is having issues.

Well, I will check in periodically to report my progress. Hopefully, this will be the last leg of this difficult journey.

Continued health and best wishes to you all! And Happy Thanksgiving! Thanks for listening.

Comments

  • MarineE5
    MarineE5 Member Posts: 1,031 Member
    Options
    Not exactly the Holiday treatment

    I hear you loud and clear on the treatments over the three Holidays. Similar to you, I started my treatment on Monday of Thanksgiving week so it was 3 treatments and a long weekend. I finished my treatments the 1st week after the New Year. Yes, broken treatments but still was happy to have a short break to heal more before the next full week. 

    I am sorry to read that you are going this alone, but I am sure you will do it. Hopefully you will make those drives home on the weekends. 

    My Best to You and Everyone Here

  • caregiver wife
    caregiver wife Member Posts: 234
    edited November 2016 #3
    Options
    Not alone...

    Hmm, isn't that why we are all here?  Thinking of you often.  Wishing you the best.

    Crystal

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    Options
    1 down

    Steven,

    I guess you put a different spin on holiday vacation.  I’ll just say you are hard to shop for, who thinks of rads & chemo for xmas?  I hope the best for you, few side effects and mega good response.

    Psych yourself up to getting those calories, you can do it!

    I hope you have a nice straight road home with little traffic.

    Best of luck.

    Matt

  • armana
    armana Member Posts: 97 Member
    edited November 2016 #5
    Options
    You will get through it

    I have read many of your posts and know how strong you are. I communicate with another warrior on a different site and he says the effects of

    radiation the 2nd time around is not as bad. you will be in my prayers, please keep us posted. 

    Arman

  • swopoe
    swopoe Member Posts: 492
    Options
    My husband and I think of you

    My husband and I think of you often, Steven. Last year, he "missed" the same 3 holidays and his birthday. Next year will totally different and better. We are praying for you! You are one of the strongest guys we know!

  • RottiesMom
    RottiesMom Member Posts: 167
    edited December 2016 #7
    Options
    Thinking about you

    You are in my prayers.  Stay strong!!   I hated the feeding tube and didn't use it the whole 7 weeks.  But, 2 days after treatment ended I crashed and couldn't  swallow at all.   I used it totally for about 6 or 7 days and then went back to drinking my shakes.  I was grateful I had it then.  Steve, a feeding tube isn't the worst thing.  I couldn't afford to lose any weight either.  I lost a total of 10lbs (3 before treatment started and 7 during).  

    Joanne

  • stevenpepe
    stevenpepe Member Posts: 234
    Options
    Hello everyone

    Well, I'm just about halfway through with my second tound of treatments. I'm happy to say there's not much to report. I feel some burning at the radiation spot and a bit of fatigue, at times. But, other than that, nothing much else. The Cisplatin dosage is low so I'm not feeling any effects from it. I've been coming home on weekends, probably the biggest inconvenience. I'm confident I can continue this way until I'm finished.

    I have noticed a slight variation of taste. Hard to tell since I never really recovered from the first round. 

    Well, I hope everyone has a wonderful Christmas season and a Happy New Year. I will check in after the holidays.

  • RottiesMom
    RottiesMom Member Posts: 167
    edited December 2016 #9
    Options
    Hi!

    Nothing much to report is good.  I'm glad you feel confident! Continued prayers for you!  Merry Christmas and New Year wishes you will be cancer free.

    Joanne

  • armana
    armana Member Posts: 97 Member
    Options

    Hello everyone

    Well, I'm just about halfway through with my second tound of treatments. I'm happy to say there's not much to report. I feel some burning at the radiation spot and a bit of fatigue, at times. But, other than that, nothing much else. The Cisplatin dosage is low so I'm not feeling any effects from it. I've been coming home on weekends, probably the biggest inconvenience. I'm confident I can continue this way until I'm finished.

    I have noticed a slight variation of taste. Hard to tell since I never really recovered from the first round. 

    Well, I hope everyone has a wonderful Christmas season and a Happy New Year. I will check in after the holidays.

    I am happy for you

    I am so happy you are doing well. You will be in my prayers.

    Arman

  • Sandraw
    Sandraw Member Posts: 40
    edited December 2016 #11
    Options
    Good

    to know you're tolerating the treatment.  Hope you get to spend the Holidays with loving family and friends. Seems since my whole ordeal began they are what matter the most and I now realize it more than ever before. Wishing you strength and renewed good health!

  • MJG1
    MJG1 Member Posts: 137 Member
    edited December 2016 #12
    Options
    Best of Luck to you as you BEAT cancer this time!

    Hi Steve,

    I admire your strength and determination as you travel this path.  Did you have IMRT the first time?  Also,  my husband was determined not to have the feeding tube, but we were forced into it as he could not hold enough down because the drinks for his nutrition caused more phlym and he would lose his nutrition...Once we got the feeding tube we were certain of what was going in etc.  It's really really made us more at ease.  It sounds like you don't have weight to lose and you need your strength so be careful!  Best of luck to you, Merry Christmas, Happy New Year and BEAT CANCER!

  • stevenpepe
    stevenpepe Member Posts: 234
    Options
    Yes, I had IMRT first round,

    Yes, I had IMRT first round, in my mouth and both sides of my neck. No tube but was able to eat some solids and shakes. After therapy, I drank Boost shakes for about a month. Couldn't take them anymore as they caused vomiting due to mucositis. I can eat most foods I've eaten before, just more slowly, with less flavor. Good luck to you and have a wonderful holiday season.