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.