Hi everybody,

My mom Barbara just finished week 5 of radiation. Her face on right side is really getting red and weepy she can hardly drink anything at this point but she is doing truly amazing. Shes lost about 15-20 pounds but she had a little extra weight to begin with. My sister who is my nanny for my 5 month old is now taking care of driving her to the appointments because its about 25 miles from Malibu where she lives so I brought the baby up to my moms for the past 3 days and my mom bathed her took her for walks and everything. One of the only things she says is truly bothering her is that she can't sing to the baby because her voice is a little hoarse.

I know she has one more week left but overall this was not what we expected. I know its a little tough for her but its nowhere near what we were prepared for. She hates the mucus that she has to spit up every hour or so and she wakes up feeling like she choking on it but its all stuff she can handle because she is really tough.

I just want to thank you all for all the help you've been. I will keep you posted about her progress. You are all in my prayers!

Danielle

Hi Danielle,
It sounds like your mom is doing about how I did with the radiation. My face got really red, I had two small open spots that were weepy. I remember waking up feeling like I was choking and that lasted for about 3 weeks after treatment ended. I lost my voice the last week of treatment but was able to talk again after about a week or so. I have always felt like the fact that I kept up and moving helped me get through it better. Not to say I didn't do my fair share of sleeping, I did, but when I was awake I tried to do all that I did before radiation.
Tell her to hang in there, she is at the end of it and it will now only get better.
Minnie

Danielle...

I had problems with waking up choking and so I started sleeping in our recliner chair. It eased the problem somewhat and it really isn't as uncomfortable as you would think. In fact, I hate to admit it but I still sleep in the chair because laying flat in bad bothers my fibromyalgia.

Khaja

Thank you Minnie and Khaja. I will let my mom know about how long she will have that choking sensation and let her know about sleeping in the recliner. It makes sense. When my baby is sick the pediatrician has me put her on an incline so that everything flows down. I will definately tell her about that. My mom is so positive and doing everything she was doing before radiation. She even wants to go back to work sooner than the doctor says. He said sometime around June 1st she is thinking of going back in the beginning of May. She cannot wait to get her taste back. The doctor did not give her a peg tube so she is barely getting anything down at this point. I keep telling her to stay hydrated so she increases her pain meds and then she is barely able to swallow but she was eating soups and drinking BoostPlus up until last week. She could still loose about 10 more pounds without being too skinny so the doctors are not too concerned.

Hope you all had a good weekend. I'll let you know how she is next week.....

Danielle

Hi Danielle,
What type of work does your mother do? Going back as soon as possible will be good for her. I worked during my radiation except for the last two weeks or so. Everyone got used to my lobster red face! But I have a very flexible job and had the luxury of setting my own hours.
Please make sure your mom understands that she will not miraculously (sp?) feel better after her last treatment. I put a calender up on the fridge and my biggest joy of the day was Xing off one of the blocks in my countdown to the end of my radiation. I would go to that calender a number of times a day and count up how many days I had left! But, when that last treatment came, it was over, and I STILL felt the same I was depressed. In fact, I felt worse over the next couple of weeks. And tell her that the taste comes back but it comes back very slow, it took me about 4 months to notice any huge change. Same thing with the saliva, it does make a come back, albeit very slow.
She's a tough woman to do it all without a tube, my doctor put one in when I had my surgery and it stayed in until a few months ago. I am thankful I had it.
Wish her luck and tell her that in a few months she can start giving advice to the newcomers on the board.
Minnie

Minnie,

My mom works for a research lab in Malibu as a Purchaser and New Contracts. She would have worked through the radiation but she was already off because she had the surgery in December and her job requires her to be on the phone a lot and with her voice getting hoarse and her mouth still somewhat healing from the surgery she opted to remain off for a while. She misses all her friends at work because shes been there for about 25 years but this whole cancer thing has really made her consider an early retirement and doing something part time that woud benefit needy people. She is soooo sweet and always looks out for everybody else. She also wants to spend plenty of time with Keeley my 5 month old. We live about 60 miles away from each other and since I work full time and she normally does too we only get together every couple weeks. Lately because my sister is my nanny and now she is taking care of my mom daycare has been an issue for me so I just bring Keeley up to my moms house and she and my sister take care of her. Its hard for me but I know that the baby is a big part of why my mom has been so strong through all this. I'm 34 and the only one of her older kids (she has a 13 year old son my half brother) thats married and she has been begging me for years to give her a grandchild. The second she sees Keeley her eyes light up and she knows she can get through anything.....

I will tell her to be patient with the eating thing and the taste thing and the saliva thing. Her oncologist sat with her for over an hour going over everything before the treatment started and she did tell her that it would be a while. She said it would take at least 6-8 weeks for the mouth sores to heal and then at least 6 months before shes 75% again. I know this will all be frustrating for her as she really misses going out to dinner and actually tasting anything. I think the reason she went without the PEG tube is because after the first surgery in April she ate more than she should have because she said...."If I ever have to go through the surgery again I do not want a feeding tube" (she hated the feeding tube in her nose) and both her ENT and Oncolgist said she didn't need the PEG tube because she could loose 20 pounds safely.

I personally think she should have gotten the PEG tube but she won't ask for it. Well anyways enough of my rambling. I will let you all know how things go over the next week and the following week she will be staying with me so maybe I can get her to get on the board and introduce herself to all you wonderful people....

Good night!
Danielle

Hi Danielle,
I lost over 60 lbs and still refused to get a PEG tube. I put 30 back on and I am now a very comfortable (and svelte) 140 lbs, perfect for my 5'6" frame. I credit my decision for being able to eat solid food sooner. Disclaimer: PEGless patients are an EXTREME minority.

As far as going back to work, I spend all of my time on the phone also and I usually couldn't even speak until noon or later for months after the end of treatment. I also suffered a lot from cancer fatigue. Don't be in any hurry to rush back to work. It takes a long time to heal from the treatment which really beats you up (I would have fared better taking on 6 muggers :p ). I took almost a year off and I "only" had radiation and chemo. I am still not totally back to speed. I am happy to report that I sound like less like a frog now in the morning than I used to.

I was in denial about all of this - I thought that the six month formula didn't apply to me -I was humbled...

The problems she is experiencing now will continue to get worse for as long as 1-2 months or so, POST treatment ("Radiation is the gift that keeps on giving"). It will take about 1 month of recovery for every week of treatment. I.e., 6 weeks Tx = 6 months of recovery. Progress is measured in 3 week intervals. And when they talk about 6 months, they mean that's when you will start to feel like a human being again - not fully back to where you were pre treatment. Taste buds will start to return at about a month or so. It's a gradual phase-in deal. I ended up enjoying my time off so much it's hard for me to get back into the flow again.

Most of us also suffer a bout with depression post treatment (which is normal).

If she goes back to work too soon she may have difficulty reopening her disability claim.

These are not hard and fast rules. Your mom may recover sooner or later, they are pretty much the average. This disease is a test of your patience more than anything else. You have to be realistic about your expectations about the recovery time.

Danielle,
Gary makes some very good points here. Some react to radiation stronger then others. I suggested going back to work as soon as possible based on the fact that she seems to be recovering much as I did. If she stay's at home for the next year would be perfectly fine also!
Guess we all go at our own speed and at our own pace.
Minnie

Gary & Minnie,

Thank you for your responses. I really think my mom is pushing herself and doesn't realize how much the radiation is taking away from her. She is pretty fatigued and has developed quite a few sores on her extremely red face and neck but it hasn't stopped her from walks on the beach with my sister and talking on the phone with me nightly. Even when I insist that I should let her go because it might be hurting her to talk she just wants to stay on the phone and chat. This last week of radiation has got to be the worst. She is so sick of the 45 minute appointments and the horrible mask. The past couple days they started to X-ray her after the radiation treatments. Does anybody know why they do this??????

She is so tired of the appointments and has been feeling sick to her stomach after the treatments now. She actually got sick on Monday and threw up that must have been horrible. Why do you think she is getting sick????? So far she has lost about 20 pounds. She is 5'8 and weighs 147 right now so the doctors are still not too concerned but I am because I know she is barely drinking 1 can of boost plus a day. Yesterday she actually ate some soup and cottage cheese because she lost 3 pounds in one day and the doctor expects her to drink 5-6 cans of Boost Plus so she has been forcing herself to eat. She says its not that it hurts (the pain medication is taking the pain away) but that she has no desire to drink anything because she has not appetite and no taste. She has now discovered the constipation thing you all talked about and we had a good laugh about it last night. After I had my baby in September I had the same problem so I could totally relate.

Anyways just wanted to update you all and ask those few questions. 28 down 2 to go. She is thrilled that she only has two sessions left. I never thought these 6 weeks would end.....

Thank you all for your support and suggestions.

Danielle

They will occasionally (at regular intervals) take an x-ray of the site that is being radiated to confirm that the radiation is indeed being confined to the area designated for treatment. These are done with the custom lead blocks in place that control the radiation pattern so the doctors can see the actual physical limits and structures involved in getting the dose of radiation. It is completely normal and is part of the checks and balances of getting radiation treatment.

Danielle,
I had Xray's during my radiation, I always hated that day the most as it took longer so that meant a longer time inside that horrible mask.
The last week of radiation was the worst for me. I also vomited a few times due to gagging on the thick secretions in my throat. I threw up a few times after treatment stopped also.
Be aware that your mom may hit a "down" spell when treatment ends, it seems to be pretty common. I know I landed smack in the middle of Depression land and it took alot to pull me out. This board was a huge part of my recovery from that stage of treatment. I felt like I wasn't doing anything to fight the cancer any longer and realized that for the rest of my days, I would be waiting at some level in fear of it coming back. If your mom hits this stage it is normal. My kids and husband were kind of thrown by it all as they thought I would be so thrilled to be done with radiation.
Chin up, sounds like she's doing awesome and has a great support system.
Minnie

Thanks Brian and Minnie,

My sister sits outside the waiting room for my mom and these past few days it has taken a lot longer because of the x-rays. They are radiating IMRT her neck, shoulders and both sides of her face so the sessions take a really long time to begin with. The darn machine breaks down so they have hang around the hospital until it starts to work again because they are 25 miles from my moms house. I can't believe she only has one more session......

I know exactly what you are talking about Minnie when you mention the depression thing. I know that both my sister and I will go through it with her. We are already at the point where we know that after radiation she will have check ups every few weeks but they will not be doing anything to fight the cancer anymore and her ENT has really put it into all of our heads that radiation is a one time thing (thats why he saved it for the recurrance).
Next week my mom (Barbara) will be at my house to take care of my little girl. I will definately have her post on the board so she can introduce herself to everybody.

I was also wondering how long will it be before her "cancer" is not the only thing on my mind? I usually don't obsess and after her first surgery I really didn't think about it too much but now its always on my mind. I try to have fun and its just this feeling I always have with me and then my mind starts to wander and I can't get it out of mind.....Have any other family members been where I am as far as obsessing with this? My mom is the most wonderful giving sweet person I have ever known. She is the GLUE that holds our very small family together. I hate that she has to go through this.....

Danielle

That reminded me that the machine I was treated on starting breaking down in the end of treatment also. It added a week to the treatment duration due to downtime. At the facility I was treated at the machines (8 of them) ran 12 hours a day. It adds one more dimension of frustration to the process. I missed a few treatment days also due to extreme sickness or rehydration at the ER. I was thirty miles from the hospital, one way, myself so I know exactly how frustrating it can - you just want to get it over with.

How long will she think about cancer? Good question. I am a year out now and think about it. I am better than I was. It's like getting jilted by someone you really love - it takes a long time (if ever) to get it out of your system. The bimonthly followups and scans don't help a lot either. How long will you think about cancer? I think we are all tainted to some degree once touched. My mother had breast cancer and melanoma and I don't remember thinking about it too much. Although the melanoma scar was huge.

Stay in the "now" the future doesn't belong to you and it can only serve to drive you crazy.

You said your mom is coming over to take care of your daughter? - who's taking care of your mom? When I was at her stage of treatment I was extremely ill - I couldn't imagine taking care of anybody - I could barely take care of myself! The latter part of treatment also compromises the immune system so DO NOT allow your mother exposure to sick persons. She can easily get pneumonia and various potentially life threatening secondary infections.

Danielle, I must echo what Gary said in the last part of the post. How can your mom take care of your daughter at this stage? She is the one who needs to be taken care of. The body energy and mental state are on a gradual decline after completing treatment and takes quite a long while to heal. I am still thinking of cancer every day even though I am over 2 years post treatment. But for caregivers, the impact is less as I feel that my husband and sons have already forgotten that they once had a severely ill cancer patient at home. Good for them.


Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi Danielle,
I understand everything Gary and Karen are saying, what they say is great advice. My family worried silly about me always wanting my grandchildren around. I know that during my treatment I spent alot of time taking care of my 4 and 5 year old grandaughters and my own children that still live at home, ages 18, 13, 11, and just turned 10. I drove them to practices, went grocery shopping, cooked dinners, shoot, 7 days after I got out of the hospital I went to Regis Hair salon in the mall, in a wheelchair to see my 18 year old get her hair done for her prom.
I guess we all get through it in different ways, I was SO fortunate. Of course, until I found this board I thought I was the sickest person around during radiation!
I also bet that your mom wants to take care of your baby and that is where I understand her the most. No matter how poorly I would feel, if my 4 year old grandaughter, Shelby, came in the door I instantly felt better. Taking care of my children and grandchildren kept me feeling more normal and less out of control.
So, I would just watch and make sure your mom doesn't get over tired with it all. I would wager that taking care of her grandchild will give her energy.
Minnie

Hi Danielle -- a lot of what you are saying about your mom sounds so familiar... I just finished with radiation treatment (IMRT) in mid-January... It kept me beat up pretty good until around Valentine's Day, though I did start feeling much better about 3 weeks out...

The past few weeks I've actually been back at work around 30-hours per week and am actually enjoying real food again (I had Chinese stir fry for dinner tonight and could taste, eat and swallow without tons of difficulty, though I'm still on some pain meds).

I have "overdone it" a few times with my job as a sports reporter/photograher (which I love) and sometimes I have to remind myself it's OK to gear down, rest and skip things I may have done before...

I empathize with her waking up and feeling like she's choking on all the mucous and gunk. I was the same way. I still have some minor problems with that at night - it comes and goes...

SOmething your mom might want to ask her doctor about --> My mouth cleared up big time about a week after my last treatment when my doc prescribed some kind of steriod to reduce swelling. Within 48 hours, I went from having a constant gagging feeling to being able to sleep through the night with little problems... That made a world of difference for me... I can't remember the name of the steriod however, but it was one of those step-down programs where you take like six the first day, five the next, etc.

Regardless, a lot of folks say your mouth clears up pretty well a few weeks post-treatment... Tell her to hang in there -- there's a light at the end of that tunnel fast approaching...

I'm sorry I wasn't clear in my post. My sister will be taking care of her and the baby. My mom will be staying at my house so she can be with the baby.(I live about 60 miles from her)My sister is the real hero here. She has given every second of her time to go to every appointment with her. I can't tell you how much that means to my mom. I work full time and have a 5 month old and husband (its like having 2 kids) and 4 big dogs. Right now my sister takes my mom to all her appointments but to be totally honest with all of you she is completely mobile and aside from people starring at her because she is so red she still continues to go to the movies, cook dinner every night for her 13 year old son and my stepdad and takes walks on the beach daily. She likes to smell food even though she can't taste anything. She is really handling the whole thing well (she thinks she is the sickest person around too Minnie she has never seen the stories on this board). She was soooo excited when I got pregnant she never thought she would be a gramma. More than anything she wants to spend time with Keeley my daughter. I have taken her up to Malibu a few times for her to stay there during this and she has taken care of her with the help of my stepdad and brother.

She doesn't like feeling tired and it was only just today that her voice has gotten really bad. She never missed a radiation appointment she just waited and waited for them to fix the machine because she did not want to prolong this any more than the six weeks.

She was so healthy before all of this. I think its really hard for her to be the sick one that people have to take care of. My grandfather died of melanoma cancer when I was 9 they caught it at a really late stage and the treatments they gave him did not work. My mom was by his bedside every step of the way. I think that whole experience makes this even harder for her....

You are all wonderful. I know our lives will be back to normal soon. Its just been going on since November and its been one thing after another with the surgery etc.... Its so frustrating.

Danielle