• Map11's Avatar

    Map11 posted an update

    It seems not much to report, then again, there's a lot. Treatments with the mask are still a killer but taking the Ativan an hr. before really, really, calms me down. A tip for the women.....unhook your bra - you'll breathe better. Considering the treatment itself is only 2-3 minutes, you'd think I could handle it without the Rx but there is no way. Four (4) treatments to go (last one on June 27th, then I guess the Dr. will order scans, etc. I don't know what to expect. Maybe someone can fill me in.

    My neck is as red as a beet. Two days ago it started to itch. Nurse gave me sodium chloride solution (saline ?) to be applied via gauze 3x per day, followed by Aquaphor. It seems to help.

    I still have my taste buds and can still smell the roses. I have always had dry mouth due to other meds and I don't think it's gotten any worse. I use the Biotene Mouth Spray and splather my lips with Carmex before I go under the mask - it helps.

    I awoke this morning with no voice. I was shocked. If I didn't know another patient in the waiting room had lost his voice, I would really have been scared. Supposed to go to a B/Day party this afternoon. Needless to say, I cancelled. Here it is, 3 hrs. later and my voice is getting back to normal - or almost normal. So maybe I can make that B/Day party after all. My last day at work is Sunday....I'm taking a medical leave - unpaid. I hope my voice lasts through the day. Dr. said last wk. of treatment and following 2-3 wks. are going to be the toughest and I will probably hate them. I have no choice but to take it one day at a time. I hope everyone is doing okay. We have to be positive!

    That's my update. Glad JoeTEMT reached out.

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      Your side effects are echoing what happened to me 4.5 years ago. I lost saliva glands, lost my taste, sore throat to the point of not being able to eat, I lost my voice for a month, don't worry it will come back. Although my voice was raspy when it came back. I'm still not normal sounding, early morning and later in the day, both, I am raspy sounding. Most all of these usually go away. I hope your last few treatments are easy and quick.

      over 7 years ago
    • Map11's Avatar
      Map11

      Thanks for your comment, GregP. At least you've given me an inkling of what I might {possibly} have to look forward to. About a year ago, my voice had gotten hoarse - now it may be raspy. Oh Joy! Again this morning I awoke with a less than normal voice - very raspy. I'll see what they have to say when I go in for my treatment. They'll probably tell me it's part of the journey and it's to be expected. Had a script for 2.5% Hydrocortisone Cream filled yesterday - for the itch. It really helped. I'm still using the saline soaks which soothe the burn. I can't imagine what the next 4 treatments are going to do to me. I'll be posting an update soon.

      over 7 years ago
  • Map11's Avatar

    Map11 posted an update

    Well, I sat with the Nurse, my Dr. and the Dietician after treatment yesterday. Discussion about soreness in throat and eating were the main topics. He said to use the M/Mouthwash before eating and to gargle with the baking soda/water solution a few times a day. They're concerned that I'm becoming dehydrated and must drink more liquids. I'm trying but it hurts to swallow even water. I tried to eat a tuna sandwich last night; didn't happen. I made chicken noodle soup and gagged; almost choked on a (small) piece of chicken. Dietician said it's time for a soft food diet. I've made a list and will go shopping. I had unwillingly put weight on prior to treatment which they're happy about; I'm not. I hope with this soft food diet I can lose a few pounds. Sounds crazy, I know. So, I'm half-way through my treatments; seems like it went by pretty quickly. I HAVE gotten used to the mask but it still makes me anxious as they're lowering it onto my face. I told the techs that in case there is a fire to not forget about me. I wish I could go to sleep for the next 2 or 3 weeks and wake up to find it's all over. I know, keep dreaming!

    I don't cook much (I live with my microwave and Joe Foreman grill and now my blender) so can anyone refer me to a site for easy, quick recipes for soft foods and smoothies? I don't eat vegetables so I've bought Orgain for its 10 certified organic fruits and vegetables, 16 grams of protein, and 23 vitamins and minerals. I also bought Boost.....both to get me thru this. Haven't started taking them yet but if I don't like the taste, I'll put them in the blender and add some frozen fruits and/or yogurt. I expect I'll have to experiment a bit. That's it for now. Stay tuned.

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      Look on our blog at www.whatnext.com/blog one of our Whatnexters has written a book on cancer and nutrition. There are some articles on the blog on different nutrition subjects. We also have a guide to Nutrition and cancer in our Beginner's guide to Cancer Here->http://bit.ly/10BQKCi

      over 7 years ago
    • Map11's Avatar
      Map11

      Thank you, Greg. I'll check out both sites.

      over 7 years ago
  • Map11's Avatar

    Map11 posted an update

    RE: Treatment Update. I had my first radiation treatment yesterday (Monday 5-20-13 …with the Ativan). Aside from the techs prepping me, which took 5 minutes or so, the actual treatment took 2 to 3 minutes. I was surprised. 3 minutes I can handle. If they're all like that and Frank Sinatra is singing in the background, I should be alright. And, yes, I drove even taking the Rx (6 miles each way).

    I had my second treatment this morning. I’m going to take the Ativan a few minutes earlier than I have been. It’s when they hold the mask above my face that I get anxious. Once I’m locked in and the treatment starts, I feel slightly better now, knowing that it’s a short period of time.

    My mouth has always been dry due to the meds I've been on for years and it makes it very difficult to swallow with the mask against my Adam's apple. What I've started to do is plaster Aquaphor on my lips which moistens my mouth only a bit and I undo my bra – both helps with my breathing.

    After only two treatments, I feel I could handle the treatment; it's the side effects that will probably kill me. A friend told me that her supervisor had radiation treatment for breast cancer and worked every day, minus one or two days here and there. After she worked, she went directly home to bed. Hopefully I'll be able to come home after treatment to get ready for work and be capable of working my full shift (I’m a cashier – on my feet).

    I've gone out and bought various items the nurse suggested, such as cough suppressant, Tums, Pepto Bismol, Honey/Lemon cough drops, baking soda to make a gargle solution. She also suggest an inexpensive cool mist humidifier if one sleeps with one's mouth open.

    Let's see what tomorrow brings.

  • Map11's Avatar

    Map11 posted an update

    Okay, so I just came back from the "simulation". After taking the Ativan, I was able to get through it. , let me tell you, it wasn't easy. I started to panic at first then made myself to calm down. The fact that they had a nice young man in today with the other woman didn't hurt. I asked for music and he played Frank Sinatra for me. I wanted to get up and dance. Altho my body didn't move, my inner body did. The music certainly did help. They said I did good. As you would expect, the techs are so very nice. Thank God. I joked that I was gonna take 2 pills next time. *;) winking

    I again asked about cutting the holes in the mask. They are strictly against it.

    The nurse later sat me down and explained a bit of what I should expect, e. g. the skin on the throat drying, the dry mouth, possible loss of taste buds, burning and everything else you're already aware of. Told me to use Dove soap and Aquaphor cream on the throat 3 times a day. She also suggested a cool mist humidifier for the dry mouth while I'm sleeping.

    My treatments start on Monday. Here's hoping all goes well.

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      that sounds about normal. It's a shaky thing to lay down and get strapped down. I had a little trouble to start with but after the first time it was bing bang boom done! You will do great once started.

      over 7 years ago
    • Map11's Avatar
      Map11

      Thanks, GregP ~ I just found your comment. Still learning my way around this site. You're right. I won't say it's bing, bang, boom but it's close. Because the treatment itself is so short a time, I enjoy the music they play for me and I sometime count the seconds. I'm about half-way through my treatments and pray for a good outcome.

      over 7 years ago
  • Map11's Avatar

    Map11 posted an update

    I was scheduled for a "simulation" today - with the mask on. Well, it didn't go well. I couldn't do it!

    They tried and 3 times I had to have them take the mask off....I couldn't breathe and I couldn't swallow because the mask is tight up against my Adam's apple. Can't wear a blindfold because it would make it even tighter. It's hard to even keep my eyes open because it's so tight. Spoke with the Dr. who doesn't want to cut holes for the eyes or the mouth because the mask was made to my specifics and could somehow change the direction of the radiation. It's now hours later and I'm still trying to catch my breath. He gave me an Rx for Ativan which I had filled immediately. But, he won't let me drive. My neighbor is taking me tomorrow morning for another try - this time with the drug. I'll see how I react to the Ativan ....maybe I'll be able to drive myself in the future. Stay tuned.