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I just got my treatment plan and I'm scared - need your encouragement

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I just received all the info about what my treatment will be and to say the least I'm very apprehensive as I will need the "dreaded mask" that I've read about and seen pictures of. My Dr. told me that one of my cancers alone would be bad enough but having both at once is very serious. I have squamous cell larynx and non small cell adenocarcinoma of the left lung. I posted on the lung cancer board after I was first diagnosed and received so many letters of encouragement and advice that I was hoping some of you who are more experienced can help me again. So many of you have been through so much more than what I will probably be experiencing so I feel like a wimp but today is just not one of my better days. Trying very hard to be optimistic and upbeat and have done rather well at it, my husband, family and I are the type that generally deal with things with humor and are still able to make some "sick" jokes about this, it's just our way with coping.

I will be receiving cistplatin (sp?) for 2 consecutive days in 3 week cycles and radiation 5 days a week for 6 weeks with the possibility of more chemo after the radiation is stopped. I still have a lot to be done before this starts, brain MRI, inserting a g-tube, CT scan, meet with a dietician and training for the g-tube. It's all so overwhelming that I kept asking myself - can I really do all of this?? I know in my heart that I can do it as I have a great support group in my husband, daughter and 2 sisters who will be there with me through all of this. It just breaks my heart to think about what I am putting my family through as I am quickly learning that I am not the only one who is going to be affected by this horrible disease. It's silly but I think my biggest "fear" is the mask, I've already told the doctor to make sure there is plenty of adavan as they are giving it to me just so I can make it through the MRI. I'm not too crazy about the thoughts of a g-tube either but the doctor is quite concerned about my not losing anymore weight and my nutrition, unfortunately I'm already a small person who can not afford to lose any weight - first time in my life I wish I were overweight :)
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I love my oncologist and have all the faith in the world in his decisions and was very happy that he didn't start reciting all the statistics for people with my types of cancers. He just said they were treatable and he was quite confident about buying me more time. That's all I'm asking for right now and maybe as things progress I will get lucky and surgery may become an option if the tumors shrink enough.

Thank you for reading this, sometimes just putting my thoughts into writing helps calm my nerves.

Good luck to everyone and may God bless us all.
Glenna

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

Hi Glenna, just wanted to send you a note wishing you the best through your treatments and in your recover! Its gonna be a long road, some days are gonna be good, some days not so good. A positive attitude and network of family and friends is exactly what you need.

Nutrition and Hyrdation is very important in your recovery. The feeding tube is a necessity in keep your nutrients, you body needs it to fight the cancer. I didnt get it, toward the end of my treatments, I wished I had. I couldnt eat, no saliva and could swallow anything that wasnt liquid. Ensure and milkshakes were all I could tolerate. I lost 12 pounds in one week an I lost a total of 50 pounds from beginning to end of treatments. So please make sure you follow your dieticians advice, drink lots of water. It really is very very important.

The mask... Ive posted on here about the dreaded mask, but knowledge is power. Read up on it, and it will help you. I went in blind sided and was freaked when I found out what I had to go through. Go in knowing all you can, thats important. Have someone there for every appointment, write down questions, concerns or medical anxieties, so that when you go see your doctor you have your list in front of you to ask.

Feel free to email me here or sirenaf40@aol.com, if you have anthing you just want to talk about. Our cancers are different, (you can read my profile to find out about me) but I went through radiation for 6 weeks to my face and neck, so I will share with you what side effects i experienced, and what helped me through it. God bless and take care.

S

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi SirenaF42, Thanks for your encouragement and advice. I am doing better now than when I first posted here about my fears. It really helps to hear from others who have shared similar experiences. There is just so much to do pre-treatment that I feel overwhelmed.

I have a great support system with my family and I'm sure they will be able to help keep my spirits up but it's not the same as talking with someone who has experienced what I am about to go through.

I fully intend to follow my doctors instructions to the letter as I am determined to beat this. I have been searching the web for all the information I can get (through trustyworthy websites only) and will continue to do so throughout my treatments as knowledge is power and I need all the power I can get. I know attitude has a lot to do with making it through this and I am doing my best to stay positive. It's just that I occasionally slip into the "I don't know if I can do all this" mode, then I remind myself of everything I have to live for and I go back to fighting.

I know I'm going to be okay and letters like yours will help me when I'm down. The funniest thing is I've never once thought "Why me?" or felt sorry for myself because there is such a history of cancer in my family that I'm really not surprised I ended up with it. Just leave it to me to get two types at one time.

Again, thanks for your advice and I may take you up on your offer and e-mail you occasionally.

Take care and God bless.
Glenna

Fireman
Posts: 28
Joined: Feb 2009

Hello Glenna;
I had a similar treatment plan as you. I was stubborn and did not want the Peg-Tube but ended up needing it. As for the rest, once I discovered I has cancer, my thought was, O.K. what do I need to do to get through this. I had no doubt that I would get through it. There were up days and down days, but I knew the down days would not last and on those days, I asked the Lord to share some of the burden and he lifted me and left me only with what I could handle. I really don't remember or focus too much on the whole experience, except to read this site and to be reminded that I can possibly encourage someone else. You are correct in saying you do not go through this alone. Your family goes through it with you. Take them to appointments with you and let them listen to and ask your doctors questions.Listen to them as they try to take care of you. You may want to prove to yourself that you can still do everything, but this is your time to relax and let your body heal. Use your imagination to humor yourself and to stay positive. Think of the mask as a space helmet and you are going into a space ship to help save the world. You may want to think yourself a super hero in a mask fighting those evil cancer cells. I also found that taking my eyes off myself and praising others for the great job they were doing helping me gave me satisfaction by letting them know they were appreciated. They felt good about this too as I took all the focus off of myself for a while to put it on others. I had my Peg-Tube removed at the end of April. The new me has energy, I'm strong, I'm healing well, and I look forward to really enjoying the rest of my life. It may be hard and not the right thing to say, but I found that setting goals and making plans for the future helped. I didn't focus on where I was except to handle the immediate situation, but focused on where I was going. With the support you have and remaining as positive as you can, you will defeat this. There is a hero in you that will take over and kick this disease in the butt. Best wishes to you and your family.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Thank you fireman for the lovely letter. It sounds to me like you came up with the perfect way to deal with your disease and the long journey you had to recovery. I think my only real concern is the mask, I'm claustraphobic and having something over my face is making me very apprehensive. I tried to "practice" for the radiation by putting a dish towel over my face and pretending I was on the beach somewhere and the towel was to keep my face from getting sunburned. LOL - it didn't work - I guess my imagination is just not that good :)

Lately when I'm feeling down I try to think of others who are much worse off than me, and I know there are many, many people who are. It helps me realize how selfish and self centered I am being at that time. As I said in my first post "I am not the only one going through this horrible journey, I'm taking my family through it also" That's the really hard part as I love my family so much and even though they will not be experiencing the physical side of this they are suffering also.

I've always been told that the good Lord won't give you more than you can handle, well I guess this is the ultimate test. I am doing pretty good at keeping my spirits up and learning more and more each day that I can't let this consume my every thought. Some days are a little harder than others but I have learned little "tricks" to help with the mental part. I just worry sometimes because if I'm this bad now what will I be like when the treatments start but that's another day, right now I'm learning to concentrate on today and wait and see what tomorrow brings.

Again, thank you for the encouragement. Bless you and may you stay healthy and happy for many, many years to come.

Glenna

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Glenna, you mention your fears about the mask and your claustrophobia AND your family's sense of humor. So I include the following from my page/blog on this site. Hope it helps, at least to let you know you are not alone :) :

Let me tell you that I endured an operation that lasted between 13 and 15 hours, depending on who you talk to, that they replaced roughly half of my tongue with muscle and nerves from my left arm, and that they took a slice out of my left leg in the event they needed tissue from somewhere else (they did not, but what the hell, it was my leg, not theirs). Let me tell you that I endured 33 of a scheduled 35 radiation treatments that lasted from 30 to 45 minutes while I was bolted down under a fiberglass sort of mask, and that I also had some fun with chemotherapy, several day-long doses of cisplatin, to be precise.

Following the surgery, I was maintained in an unconscious state for four days, so that I would not move about, in the ICU. I then spent another week and a half or two in the hospital in various stages of opiated happiness, with a resolute effort to be cured at once, and experiencing wondrous and horrible conspiracies that were only in my mind.

Later, after release from the hospital and confirmation that all of my mad dreams were not true, I enjoyed chemotherapy: day-long lounges in easy chairs with needles in my arm and balloon-sized, well, balloons, filled with chemical wonders infiltrating my immune system. During all of this, I was receiving radiation treatments, daily, for seven weeks. As a claustrophobe, I was not enamored of the idea of having my face pinned down to a table in a fiberglass mask for 30 to 45 minutes. In fact, I advised the medical folks I would rather die than go through this for seven weeks, but they opted to ignore me. From this, I can tell you two things: I had never taken valium before but suddenly realized it was one of the greatest inventions since the wheel, and, two, music is the greatest clock in the world. I calculated that every song was three minutes long, and used this to help me get through the dragging, dragging minutes to the end of each session.

As time passed, I made the effort to reduce my valium dose, but never went without the music, and never really got used to being bolted down to a table. Of all of the experiences I had, this, the radiation, the mask, is the part I would least wish on anyone. And yet, if I can do it, anyone can. I'm not saying I did it with grace and courage, but I did it. (You should know: after the trial episode, I DID say I was going to have to die, because I was not going to go through this, and they finally offered me to stay in the hospital like the children, so that I could get drugs and so forth, and I actually said YES!!! That sounds good to me!!! And they shook their heads as if to tell me I was a wimp and then the doc said, "You are a wimp." Ultimately, I was not allowed that option.)

:)

Take care,

Joe

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Soccerfreaks,

I've read several of your postings to others and I love the way you deal with everything with just the right amount of humor :) I and my family have a wonderful sense of humor and can find something funny in almost anything. We have managed to make jokes about my impending hair loss - I'm just going to tell everyone that I'm having a "Britney Spears moment". I can't begin to tell you and everyone else who has responded to my post how much it means to me to read about your experiences and how you handled them. I am definitely going to have to check out your blog as I love the way you write about your experiences. You have a wonderful sense of humor.

I'm not the least concerned with the hair loss or the scar from the tube, I told my doctor that my looks are of no concern to me right now. Treating this ugly thing is all I want now.
I'm sure I will eventually get used to the mask but I don't think I will be able to do it without drugs - aren't they a wonderful thing!! They had to give me a prescription for lorazepam just so I can do the brain MRI tomorrow :) What a wimp :)

I think reading this discussion board is probably going to be what gets me through all of this. Most of the letters are so encouraging that it always lifts my spirits when I'm feeling down.

Thanks again for writing - take care and keep smiling,
Glenna

pmfennell's picture
pmfennell
Posts: 28
Joined: Jun 2009

Hello Glenna

You are about to go on a journey that requires a positive attitude, a good sense of humor and a good support system. Sounds like you have all 3. I am 6 years out of Squamous cell TX and it remains in remission. I too, was not wild about the mask or the tube. I had the tube put in even before tx began and went for a 2nd opinion and ultimately had 2 masks made. One at the treating hospital and one at my second opinion hospital. Talk about looking for trouble. I found once tx began I had them cut the area around my eyes out so I was not looking through the mask. That helped quite a bit. My tx times varied once a week it was for 3o minutes and 4 times a week for 15 minutes. My hospital realized the power of music for soothing as well and I was allowed to bring in whatever music I wanted to listen to during my tx times. It was a god send. It, along with lorazapam helped me get through the tx. I also had a very caring tx team and I was their number one concern whenever I was there for tx. Th G-tube was another good thing to have. I was only able to take in fluids through my mouth during tx and like everyone else I lost weight. So, I relied heavily on the G-tube for nourishment for several months during and after tx. I used it overnight with a pump, so during the day I could use my swallowing muscles for small amounts of eggs and high protein shakes. I also drank sleepy time tea. NEVER stop using your swallowing muscles, even if just for liquids. Maintaining these muscles will serve you well after tx. When my tx stopped, I found myself taking in 4000 calories a day and still losing weight. Your body craves calories as it tries to repair itself from all the abuse it took during cancer tx. I finally leveled off at 170 and I know weigh a nice 193lbs. After tx I ate meatloaf, ice cream, tea and used my G-tube for 3 months post tx. The tube was a good thing to have and get it done as soon as your doctors will allow it. The reason is you want to make sure you heal from the minor procedure and that the tube works. My docs. had me flush it with water 3 times a day to get use to using it. I ended up having mine moved from my stomach to my lower intestine because it gave me nausea while in my stomach. I was glad I discovered this while I was not too far into my tx. Like everyone has said, you will have good days and bad, get some good books and movies to entertain yourself and keep a journal. I found this very helpful as I went through tx and still read my journal from time to time today. It was a good tool to help me get through tx. Feel free to write me as well at pmfennell@myfairpoint.net. I am available to chat/write to anytime. Good luck and be well. You will get through this.
Pete

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Pete,

Well, my journey begins in 3 hours. I have my first session of chemo followed by radiation today and tomorrow then it will be just daily radiation until my next chemo in 3 weeks. I had the tube put in 2 weeks ago as a precaution because both of my doctors were concerned about my weight. I'm also assuming that since the radiation is on my larynx they are concerned about my ability to swallow. I've had some trouble swallowing for the past few weeks due to the size and location of the tumor. The doctors have already scheduled an appointment for me with a speech therapist. I don't think she can do much for my voice (it's more of a raspy whisper) but I believe she is going to work with me on improving my swallowing and exercises for my jaws.

I too have been keeping a journal, mostly so I can refer back to it later and remember how I felt during all of this. Like most people I have good days and bad days, mostly good so far. I think I have more good days because the reality hasn't set in yet, I'm sure it will after today :) There are so many others out there who have been through all of this and survived so I am confident that I will.

Thank you for your encouragement and I may take you up on your offer to write to you.

Glenna

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Five years ago, I was diagnosed with a stage 4 squamous cell carcinoma in the base of my tongue. They also did a sentinel node biopsy and removed a lymph node in my neck and armpit. I'm still alive but the journey hasn't been easy. After my 11th treatment with "the mask", I was extremely close to telling my oncologist to stop treatment and just let me die. I hung in there for 27 more treatments.

There are long term effects of radiation but try to go through it one step at a time. Get through this ordeal first.

I resisted the GPEG at first but ended up having to install one due to my deteriorating condition. I was overweight to begin with and at one point had lost 91 pounds. I am now holding my own at 145 after gaining 16 pounds back. Since you are underweight, you definitely need the GPEG.

I was also treated with Cisplatin. Between the nausea, weight loss and radiation treatments, it's not a pleasant experience. Hang in there though, you can beat it!

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi George,

I'm glad your through your treatments and hope your health continues to improve. I don't really have much choice with the G-tube, the doctor said I won't be able to eat or drink much after radiation and have to keep my weight and nutrition in check. I joke that it's the first time in my life that I wish I were overweight :) I'm already having problems swallowing because of the pain and the location of the tumor so I guess in another week I will be enjoying a liquid lunch. I'll have my husband cook something that smells good while I am pouring a can of lunch into my tube, that way I can pretend I'm eating whatever it is he is cooking Do they make belly bibs just in case my aim isn't too good?? They said I could do it intravenously or by pouring it right into my tube but I think I'd rather just pour it in and get it over with.

Thank you for you encouraging letter, take care of yourself and be happy :)
Glenna

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Great idea about having your hub cook something! It tortured me, to be honest, to smell food, but I really think it is a good motivator.

As for the method of getting the 'liquid lunch' down, in my case, I affix a tube (shaped like an over-large syringe, but plastic) into the tube entrance and pour the liquid down that...is yours different?

If not, in my experience they taught me to pour the liquid (Jevity) into a beaker and then to pour from the beaker into that plastic tube, and then to use a 'plunger' to get it down. This worked fine as long as they were doing it, but when I got home, it got old fast. What I learned to do was to pour a can of Jevity into each beaker, and then to add water, nearly to the brim, and this thinnned the liquid enough that it would pass through the tube without a plunger, gravity-fed, if you will. Keep that in mind. It makes life a lot easier.

An aside re the smell: Once, I came out of my supply room with two cans of Jevity, exclaiming to all that I had chosen the spaghetti and meatballs over the steak and mushrooms. My son-in-law was astonished: They do that? he wondered.

Glenna, you have all of the requirements for great success with this stuff, hope and humor and, I sense, great personal strength to go along with a wonderful support system. You will be fine.

Take care,

Joe

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Joe,

First let me tell you that I read your blog and I think you should become a writer!! Even though you went through so much because of this horrible disease you write about it with so much humor that it could be a best selling novel :)

I am having my tube inserted tomorrow morning so I don't know yet what it looks like or how to use it. I am going to be having a visiting nurse come to my house to show me how to care for it and use it. I will definitely remember your advise about diluting the mixture as that is probably the route I will be taking. I'm not crazy about having to use it but I'm afraid it's going to be a necessity as I am still losing weight even though I am eating as much as I possibly can. My family had a cook out for me yesterday with all my favorite foods and I ate A LOT!! Got up this morning and I've lost another 2 pounds.

I had my brain MRI and CT scan yesterday, I made it through the MRI with only one magic little pill. I meet with my radiologist this afternoon to go over the radiation treatments so I'm sure I will get all the scary info about the mask today. I showed my sisters a picture on the internet of the "mask" and we've come up with some pretty good "Jason Vorhee's" type jokes already :)

Again, I just want to thank you for all your advice, I'm sure I will be asking for more in the near future. I'd also like to thank you for all your encouragement (and everyone else who has responded to my posts) as it makes it so much easier to go through all of this after reading how everyone else did it. Fortunately, most people are very upbeat and positive about this, I really haven't read any stories that have scared me, which I am very greatful for. I'm such a wimp that if I read about one experience that made it sound like a torture chamber I would probably have to be sedated for at least 3 month LOL

Thank you and keep smiling - I know I will be trying.

Glenna

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Glenna, if you have read my entire blog, there are some who would argue that you have been tortured enough.

You will be fine. I know.

Hope and Humor!

Take care,

Joe

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

The brain MRI is another source of amusement (I hope). I came home and told my wife they found nothing and she commented, "Just as I suspected."

Take care,

Joe

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I got the same type of comments from my sisters - "They are wasting their time as we all know there is nothing up there", "It's hereditary, we are all brainless"

Gotta love the sense of humor :)

Glenna

TIM_WWJD
Posts: 38
Joined: Jan 2009

Hi, I don't look in here as much as I should. I always like to pass on my experiences as I found in my journey that information is a big key to fighting this so here is my nickels worth.
I am in the last week of my treatment for tonsil cancer which concluded with seven weeks of rad/chemo combined. I don't know what else I have to offer for advice as you have been given some good stuff here. Joe is a very dedicated man to this site and he has seen so many come and go that his experience was very helpful. I was also able to make a personal contact with someone else going through my same cancer and treatment type, or as close as possible. This really helped me to have him there.
The mask, my worst time was having it made, just because I did not know how long it would take. After that I was able to get through it fairly well just knowing there was a time frame that I would have to lay there and it would end. Be sure to tell your technicians it bothers you and they can hurry in after and release your head first,
The G-tube, it is a life saver. I got mine when they installed the PORT in the very beginning. The greatest thing ever. Understand you need to eat and swallow as much as possible to keep the muscles working right but when you need it, it is a lifesaver. I was told my weight needed to stay up because the chemo and radition treatment plans are based on my weight, so for them to work right the weight had to stay the same. Of course there is the fact that too much weight loss and your body will suffer and it will prolong treatment. When you meet with your nutritionist ask about Resource 2.0. It is a high protien/calorie drink that can be prescribed. I don't know your insurance situation but sometimes this is a cheaper way to go than buying over the counter drinks. This is a very expensive journey even with insurance so save where you can. I tried to do some blending of regular food and putting that in the tube but it is a big hassel and I couldn't really taste so I went back to the boxes. I had to crush some medications and I found that mixing those with apple sauce helped "bind" them better than staight liquids. I then thinned the sauce to go in the tube easier. I also wanted to keep my stomach use to regular food so I bought baby food and ceral for that. Every once in awhile I mix some of those in. The key is get plenty of food and fluids coming in.
You will experience so many different side effects it will boggle your mind. Just when you get one figured out you will get a new one to play with. You are right though God will not give you more than you can handle and if you lean on Him and your support team you will do great. It is no picnic but when it is over you will be able to have one. I have written a novel here so I better go, good luck and God bless.
Tim

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Tim,

Thank you for sharing your experience with the G-tube, I can use all of the advice and tips on maintaining my weight and nutrition I can get. I had the tube put in yesterday and am hoping I don't have to use it for a while. I am eating anything I can swallow, drinking Ensure and plenty of water. Sometimes it seems like a waste to drink so much because I spend half my time in the bathroom because of all the liquids I drink :)

My husband has stocked up on butterscotch pudding as that is my favorite treat and I'm hoping I will be able to swallow it during the radiation treatments. My radiologist has given me so much literature to read on keeping up my nutrition that I will probably still be reading it when my treatments start on the 23rd. LOL

Right now I just keep telling myself - I can do this - and reading the postings here for encouragement. I know I can make it through this, it's just going to be a very, very long summer.

Again, thank you and God bless.

Glenna

Jan Trinks's picture
Jan Trinks
Posts: 466
Joined: Apr 2009

Hi Glenna:

My husband completed inductive chemo and seven weeks of imrt radiation for head and neck cancer. All things considered he came through with flying colors; not that it was easy and it rough at times; but he never threw up; was basically tired a lot and the dreaded mask you mentioned. He said the worst part was being fitted for it. After that during the actual radiation, it wasn't too bad. He did have a peg tube put in in March but he never used it; but we were glad he had it just in case. We just kept it clean and flushed out! He had chemo on Dec. 1 2009; Dec. 22 and January 19. He began his radiation on March 11 and finished on April 30; 35 treatments in all. We love both his oncologists. I'm the one that's been more of a basket case than he was! But he had his first CT scan since treatment last Friday and we got the results today and the radiation oncologist said it looked fabulous. I teach so I'm now out for the summer and he'd gone back to work this week so I got the call. Hang in there; you will make it through the treatments even though it might be tough at times. You're in our prayers.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Jan, what wonderful news about your husbands scan. It is very encouraging that your husband said the fitting was the worst part as I was surprised at how easily I made it through that part. I intend to use my imagination and sense of humor each time they have to put that mask on me and believe me I have a very good imagination :)

I know with the encouragement of my family and friends and all the wonderful people who post on this board that I will make it through all of this. I'm also convinced that I will get great news from my doctors when this is all over. Right now the hard part is waiting, I have ten days until the chemo/radiation starts, I'm not looking forward to it but want to get this started and over with.

Thank you for keeping me in your prayers and continued good health to you and your husband.

Glenna

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