The News On Sunday...
Okay, I get the word from you.. change my photo again. The one taken in La Quinta is too small -- maybe I can crop it and make it bigger -- but that's not exactly top of the page news, is it?
If I can stop coughing long enough to type , I shall get some info on here today. This is my day off. Day off from radiation. Son Tod ( todgoldberg.com) and I talked about radiation last night.. or I said a few words and then listened.. Darn cough makes it so I can barely talk.
He said ," You sound terrible." I mostly felt that way, too. It isn't the fatigue, it is the cough ( from radiation ) that doesn't end and the sore throat. My voice comes and goes like a fan on breeze control.
I know, another two weeks and this will be past me and the side effects of the cough and throat should ease up each day.
Social life? Zip. I'm pretty much stuck in the bathroom. No, not for calls of nature, for calls to take more medications. However, on April 1 I am going to try going out to a party with my friend Jerry . Huge Palm Springs private party. 600 guests. Keep your fingers and legs crossed that I do not cough my way through the party!
I have nine more days , not counting weekends, of the radiation period. Then what? Not sure. But for now, I'm only concentrating on the radiation.
My son Tod thinks the worst part of all this treatment the last 30 days or more is having to go every day.In just the last 4 weeks, I have put 600 miles on my car going to and from the Lucy Curcy Cancer Center at the hospital.
I try and make my drive pleasant. How else to do it and not get bored? I focus on the scenery and believe me it is so beautiful here now. Snow on the mountains, the tall palm trees sway a bit in a breeze, there are masses of flowers blooming on every street , in front of every house. I try and take in that beauty each day, notice the way the sun casts shadows on the mountains, the cloud formations - all of it.
I also try and make my time at the cancer center a good experience. After all, the actual radiation is not a pain.
The group of staff people I see every day go out of their way to make it pleasant. It's hard to be grumpy or depressed with all the smiles one gets.
Everyone from the front desk to doctors to every tech and nurse - they all say hello and call me by name.. How do they do that, remember us all, even those of us who are not their patient? Beats me, but it's pretty wonderful and I told my doctor that, too. The decor at the center is all geared to serenity, too.. that makes the time easier in a way. Not so clinical in feeling.
The same patients are there every day, or are just finishing up their treatment and have shared these last weeks with me. We all wait in a private lounge each day for our turn under the machines.. so of course, we become familiar faces. We ask each other how we are doing, give each other support.
It's an amazing group of people. They are very much like those I used to see when I was in chemotherapy. And most have been through chemo and are facing it again. Many a woman or man with hair just growing back in.
I wish I could take their attitudes about life, package it and hand to everyone out there who bitches about the small things in life. And that includes those who don't understand the value of time, of seeing those they care about, appreciating the things they have.
How often do you ask strangers how they feel and really care about how they feel? How often do you notice what they are wearing, or how their hair is, their eye color, their pretty skin... find some minor thing you can compliment them on to make them smile? Give it a try. It's a nice feeling. Makes me feel better to do that each day, surely it will make you feel better, too.
One day last week I changed my time to go. The next day I had so many people concerned.. " Where were you, I worried about you, I missed getting to see you .." Shows you how we keep track of each other, help each other. Most days I walk a woman with brain cancer back out to her husband in the lobby. We hold hands as if we have known each other for decades. I feel we have. She hugs me hello when she sees me, confides in me the things she won't tell her family. She doesn't want to upset them. I understand that. There is so much I don't tell my kids. What are they going to do about it? They aren't God or a doctor, so I try not to cry to them.. but my daughter Karen.. she often gets it from me, lets me vent my feelings to her and then I feel guilty for that. And I have cried in front of my son Tod. And on the phone with my man friend in DC.
You know, some times it is just hard to hold it in any more.One day I asked the brain tumor woman... "How are you doing?" and she put her arms around me and just sobbed and sobbed.
I told her it was okay to cry. We all cry now and then and if she would rather cry on my shoulder than upset her husband, go ahead.
It's our little secret.
I ran into a radiation friend as I came back to the parking lot last Wednesday and when she asked how I was -- it was the first time in public I ever cried. I just couldn't help it.. I was in a lot of chest and throat pain. I didn't howl like a baby, but I couldn't stop the tears from rolling down my cheeks. She understood and never said anything about the fact I was crying.. but she did reach out and wipe my tears away.
I'm often asked how can I do this alone, living alone. No boy friend, no husband. A nurse said to me, " Is there someone at home?" When I said the pest control man would be there, everyone laughed.
I do say I have a cell phone, a house phone, a computer..I have wonderful children, wonderful friends all who stay in touch.
Yesterday the mail brought me a super card from my classmates from Wa-Hi in Walla Walla, WA... a group of them had all signed the card. These are people I have known since I began grade school.. pretty heart warming , wonderful supportive gang.
I've needed that support... this radiation time has been , at times, the treatment from hell. I thought it was going to be a breeze.. and I have to remember that my oncologist told me last January that I might have a burned throat and not be able to swallow for two or three weeks. I thought I might escape that side effect. I didn't.
My throat is burned ( on the inside) and that causes such pain I can't even begin to describe it, and no matter what I tried to swallow , including my own saliva, it was the worst pain ever. I told my radiation oncologist I would rather have a root canal while also delivering a baby breach then go through another day and night of this pain..
I need pain management , I told my doctor Thursday. Two weeks or more of this ongoing pain... I was not only ready to throw in the towel, I was ready to toss in the entire linen closet. It had become more than I could tolerate and I can tolerate a lot.
This is my routine before trying to swallow. Take a vicodin first, take the liquid mix to numb the throat, take the cough medicine with the codeine... then try another swallow. Still felt like someone was hitting me in the chest with a sledgehammer covered in flaming spikes.
I walked around holding on to my chest or my throat. Another patient saw me doing that and burst out laughing.." aha, you're suffering , too... I'd like to take off my throat and get some sleep! "
If you are in radiation and it is hitting your throat or near that area and causing you to go through the pains I was, she was...- here are tips I learned and advise from the doctor - and it finally did ease the pains so I could get down yogurt this weekend and some watermelon, too. And I have been able to sleep some, too. It isn't the pain keeping me awake, it is the cough and I'd rather deal with the cough than with pain.
For the exterior - your skin. Put pure Aloe Vera gel on, as often as you can. Now, I live alone and there is no one to put the gel on my back and the radiation is hitting my back.. so then what? My friend Lori came up with a brilliant idea.
Take a bath brush. Wrap a washrag around it and secure with a rubber band. Load the gel on to the washrag -- brush your back!
Dr. had me increase my pain medication to two vicodin every four hours and add an Advil to that, too.
I was not taking it every four hours. I would try and tough it out, go six hours, go until I couldn't stand it any more and then I felt the medication wasn't really working.
My daughter told me she had done the same after her C-section and learned you can't let that time lapse, take the medication on time, before the pain gets ahead of you.
So now I do that. Made a huge difference and I take my cough medicine every four hours, too.
Take two tablespoons of the doctor's liquid mixture of things that numb the throat 15 minutes before each attempt at a meal and again at bedtime.
Let me share the throat numb mixture that the doc created and if your throat is killing you or you have pains in the center of your chest ( that is still the esophagus).. you need this. It is not a regular RX. You need your doctor to have the pharmacy make the mix -- Diphen/Lidoc/Mylanta.
NOW... add this to your list of what to take and this was the surprise that made life easier for me on Thursday.
Add any over the counter anti acid. I am taking Pepcid, only because I had it in Rx form. Dr. explained to me there is acid -- I don't know all of the reasons why , but the bottom line to this paragraph is that worked, it made it so I could swallow. Cheers!!!!
No, not steak or salad or leg of lamb...but some yogurt and I even had soggy Cheerios with a sliced banana.
Catching up on reading..
With the cough, I have to sit up - falling asleep or not.. so to distract myself I read and I just finished my son Lee Goldberg's new Diagnosis Murder book. What a fun read. Go get it. It's a sit by the pool book, a sit on the beach read, an airplane read, or a book to get you through a bad night.
" Diagnosis Murder -- The Dead Letter."
Lee ( leegoldberg.com) can weave a plot and murder people with such ease. How he comes up with all that is way beyond me. He is so totally non-violent in real life!
Movie time...
Last night was , well, a bad night. I finished off Lee's book and then when a coughing fit woke me at 2:00 a.m. ,then what? I turned on the t.v. and watched two chick flick films that just happened to be on as I channel surfed.
One, with Debra Messing about her hiring a male escort was cute and the male escort was so sexy! I don't know his name but will get it.. don't remember ever having seen him before.. Changed the channel and there was Julia Roberts in a film with the same guy!
Time to get back to chores here..
That means take all those medications you read... go get some more hot coffee ( it seems to help the cough. I don't know why it does).. and then try and get through some of the mail that has piled up... and take a long hot steaming shower.
Thanks for stopping to read, sorry this was a bit of a downer today, but I said long ago I would be honest on here and not sugar coat any treatment because what good is that for those of you who are caregivers or patients?
I forgot one thing.. When eating or drinking with the burned throat, try and have things that are room temperature. Helps somehow.
Very cold was very bad!
I forgot to give you the update on my heart problems. I must be having chemo brain again!
My heart is fine. I went through a zillion tests. The answer seems to be that this up and down blood pressure, the fast heart rate is all connected to radiation and just ride this out , take the heart medication on the days my blood pressure spikes, try and tolerate the fast heart rate, don't run any marathons, stay in contact with the cardiologist.
One of the nice reports , other than that, was the vast number of blood panels I had taken. Everything is normal.. Don't need to take Lipator or steroids -- my other ailments are all under control. Whew!
Why don't you go grab brunch out somewhere nice, take a long walk, visit with your family - enjoy your Sunday and that means get off the computer.
I'm hoping to see my son Tod and his wife Wendy today and get down more food, too!
See you on here soon.
Fondly,
Jan
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