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burns

LaCh
Posts: 528
Joined: Dec 2012

This is only day 4 and a few hours after the 4th radiation tx, I think I'm feeling the beginning of burns. Has anyone else had this so early on in the treatmens and if so, what does that mean for the 25 days that remain?

Applied aquaphor but how do you get it off before the next radiation? It's very thick and not water soluble.

Marynb
Posts: 1134
Joined: Aug 2012

No, I did not feel burns that early on at all. When you have radiation burns, you will know it. If you do use the aquaphor this early, wash it off well with Dove for Sensitive skin body wash( recommended by hospital) , using the handheld shower.

I hope you are sleeping better and enjoying this spring like weather! Seems the weather is cooperating for you! Stay positive and hang in there! Soon, this cancer will be history!

LaCh
Posts: 528
Joined: Dec 2012

Took a look with the mirror, it's a small burn or blister, now I'm developing a mouth sore, diarrhea and have been fatigued since day 2. This doesn't bode too well for the next 5 and a half weeks, unless these things reach a plateau. Oh well. Nothing to do about it I suppose. I'm fairly good at sucking it up and that's what's required now. The temps here are dropping, it's been overcast all day and we're in for some very bad weather over the next day or so. Good things: the port needle comes out tomorrow and the weekend is almost here, so I get a break from Txs. Curious how quickly and completely a world can shrink to exclude everything except this one thing.
My take is, I'll have a good story to tell when all is said and done, and even better because I'm doing it alone. It isn't ideal and it isn't my first choice, but I suppose it makes for a good story.
Gonna buy a portable sitz bath. I used paper towels soaked in epsom salt and water but a small plastic sitz bath might be better. Thanks for the comments...

Marynb
Posts: 1134
Joined: Aug 2012

LaCh, I think you should talk to your doctors. Burining this early in treatment with blisters is highly unusual. I was stage 2 and did not experience any blistering at all throughout treatment. I hope you are being treated at a reputable hospital. I have heard horror stories about damage from radiation from people who chose to go to local facilities that did not have the best equipment . Blistering after 3 treatments is pretty extreme. As a precaution, I would not use any lotions. Residue from lotions acutally causes burning. In order to get lotions off, you would have to scrub the skin.

Also, re. the mouth blisters. I never had any sign of mouth blisters. Did you have a good cleaning just prior to treatments? Start rinsing your mouth several times a day with a warm salt water rinse.

I would discuss these things with the doctors. This is highly unusual. I don't know enough about radiation equipment and dosages to know what is standard. I hope you are having IMRT.

The weather was great all week! We may get a little rain tomorrow. Just in time for you to rest for the weekend! You are almost done with your first week! Hang in there.

LaCh
Posts: 528
Joined: Dec 2012

Yeah, I spoke to the radio onc by phone, he won't be in tomorrow but he'll have his nurse look at it. I'm also having blood from inside and while that's not unusual for me (the tumor bled for a long time) the blood is darker and different now, so I'll mention that as well. Is the facility reputable? The facility is, but is he? Dunno. I don't like him but that says nothing about his competancy. He was highly recommended but that doesn't mean anything either. To be honest, this treatment--the only one western medicine has to offer--seems ludicrous to me in the first place. Why don't I simply drink something toxic, go to Chernoble, sit on a rock for a while, come home and cross my fingers? I'm going to try to find out what sorts of tumors can result from this treatment 20 years down the road to see what might be done about it premptively. Re: IMRT, yes, I'm receiving IMRT. I take it you're in NYC? They're predicting rain and 50 mph winds for tomorrow morning. Sounds pretty unpleasant. I have to leave the house at 7:30 for rads at 8, right in the thick of things. Anyway, the needle is coming out of the port tomorrow afternoon and for THAT I'm VERY grateful. Thanks Santa. And yes, that week one is almost over isn't lost on me and I'm very glad for it, and also glad that next week will skip Tuesday due to the holiday. Good thing that week one is almost over, although I also realize that the few mild side effects that I'm feeling now are just a taste of things to come. Without any unforseen circumstances necesitating a suspension of treatments, my last radiation is scheduled for January 29.

Marynb
Posts: 1134
Joined: Aug 2012

You do have a way with words! It does seem illogical, but this is what they say will cure this cancer, so we gladly go for it! I am not in NYC, I am in southern New England, but we have the same weather. Until recently my daughter lived in NYC, so I know it well. I love the city at
Christmas! I hope that you have a restful weekend. One week down is great!

LaCh
Posts: 528
Joined: Dec 2012

Well, first off, thanks for your comments about having a way with words. I'm not so sure if NYC weather is the same as New England's but it's closer to New England's than, say, New Mexico's or Florida's. It was pouring rain and blowing hard enough yesterday to soak me and knock me around on the way to radiation and although it's stopped raining, the temps are dropping pretty fast and the wind is still blowing. Christmas in NYC? Well...maybe, I dunno. I was born here, I've lived here all my life and after seeing 59 Christmas's in NYC, it sort of loses it's luster a bit. As for resting... I'm having back and leg pain which is waking me up at around 3 and keeping me up, along with a really bizzare numbness in my knee, which suffered a bad injury and 3 surgeries way back in 1990. I began to notice yesterday that if I run my hand over the skin over my patella, it's numb. If I close my eyes and someone touchs it without applying pressure (which I can feel) I won't know it. Along with the doubts I already have about the treatments to which I've surrendered myself, this latest and perhaps most bizzare effect of all just underscores to me that they (the doctors) despite their bravado of confidence, have only a partial understanding of what they're doing and what the results will be. And it's the parts that they don't know--which they don't like to talk about--that's the problem for me because it begs the question, What else don't they know? I have a blister under the needle of the port; it was killing me all week and was only evident when they removed the needle yesterday. They'd never seen that before. Most people fall inside the bell curve of predictable reactions; some people fall outside it. If you're one of those people who falls outside the bell curve of expected responses, you're pretty much out there on the frozen lake by yourself, just hoping that the ice doesn't crack beneath your feet and down you go. What the doctors don't know seems (to me) almost equal to what they do know. It's like the kid in middle school that gets up in front of the class to give a verbal report on something, and once the other kids and the teacher begin asking him questions about his chosen subject, something that he supposedly spent months researching, does it become clear that his understanding is incomplete and superficial at best. Why am I doing what I'm doing? I ask myself that question every day. I question my decision every day. I reevaluate my decision every day. And I'm uncertain that I've chosen the right path, pretty much every day. Don't get me wrong. I'm not ready to die and hope not to just yet, but we all make cost/benefit assesments every day, in every aspect of our lives and I'm not really sure that the cost/benefit equation with the treatment I'm receiving is tipped toward the "benefit" side of the scale. I understand that we each make our own choices and decisions based on a multitude of factors and that these choices are deeply personal; what I choose is right for me but might not be right for the next person, and what the next person chooses might not be right for someone else. But I just have grave doubts about what I'm doing and why I'm doing it. I don't believe in God but do believe that consciousness continues after bodily death and I also believe in the cycle of reincarnation. These are just two of the things that I factor into my cost/benefit assesment when weighing this highly dubious (in my opinion) treatment. In any case.... today is today and I don't need to think about tomorrow until tomorrow, at least in the sense of the doings of daily life. Accupuncture later this morning; a movie later in the week if I'm feeling well enough. The bigger questions about the long term issues... Yes, I have to give those some thought. It's really a simple question for me. Which will I regret more? Treating or not treating this cancer. I hope that such ruminations aren't offputting to the other readers and posters of this site; these are just my own thoughts and feelings and opinions and I don't urge them on anyone else. They're just mine.

geneviasue's picture
geneviasue
Posts: 89
Joined: Oct 2012

When given a choice, I'd always chose life. Not because its always easy or because someone told me too but to not chose life means I gave up. I allowed some evil cell within my body to beat the trillions of good ones. I know you said you don't believe in God and I respect your choice to believe differently than I do but I'm going to pray that God show himself to you and assure you that you are going to overcome this and be stronger for it. I'm not trying to convince you of anything but simply reaching out to you in the only way I know how..by prayer. I will never meet you, talk to you or hold your hand but I'm confident that someone will cross your path that can and will. We in this flesh are nothing more than skin, bone and matter but our soul lives forever.

May your days be brighter
Gigi

Marynb
Posts: 1134
Joined: Aug 2012

Yes, it was stormy yesterday morning and surely it was windy enough to knock you over at times. But,somehow you made it through. I have been feeling somehwat down because for the first time my daughter cannot come home for Christmas. The wet weather suited my mood. As I went about my Christmas shopping, I bundled up and weathered the storm, as I am sure that you did. We got to where we needed to go, but it was not easy.
By early afternoon, the storm had passed! It was surprising how quickly such a fierce storm swept by us and I was so glad to see the sun. I live on the bay and when I pulled into my street there was a beautiful rainbow! So amazing. It lifted my spririts and for me, it was a sign from God. A reminder that when we go through difficult times, there is something much better ahead. That is God's promise to us. If we had not had that horrible, but fast moving storm, we never would have seen that rainbow. Such is life. It is so worth all the bumps, bruises, and pains. It is so worth fighting for!
I am so very grateful to be here this Christmas! I have battled 2 cancers in one year. There were moments I really thought that I may not be here for another Christmas! Thank God in heaven that there are doctors who have spent their lives dedicated to curing cancer. They are not there yet. For anal cancer, there is a
very good chance of a cure with the treatments that they have. I have another cancer for which there is no
cure....yet. They are working on it. I do believe that some day, some where, they will find a cure.
I am sorry that anyone has to suffer with this or any other cancer. Somehow, there is beauty in the battle for life. I know it is at these times that God is ever present with us. This is life.

LaCh
Posts: 528
Joined: Dec 2012

Thanks for your comments. I think I may have innacurately portrayed myself and my sitiation. I'm actually not "down" nor suffering, not very much yet anyway. I love life and my intention is to continue living it. I don't use the word "fight" becuase I think that "fight" "war-against" and "battle" are too much a part of our lexicoin because we're basically a fightin' species but I understand that for many people, to think of it as a fight or a battle can help them feel proactive and empowered. I don't see this situation as bad luck or a horrible thing in any way whatsoever, I see it as just "one of those things" that happens in life, certainly with stakes higher than most, but something to be with dealt with finesse and thoughtful consideraton. For me, "fight" isn't how I think of this. I just do what I need to do. I put one foot in front of the other and move forward. My choices aren't made in sadness nor in despair because decisions made in those emotional states are never good ones and in any case, I dont feel sad or in despair. Am I unsatisfied with my radio oncologist? Yes. Am I unhappy with western medicine and the limited tools in its toolbox? Very much so. Am I fed up with the evolution of the Hippocratic Oath from "First do no harm," to "It's ok to do harm if you also do good and we'll decide what constitutes "good."? Yes, I find that attitude sorely lacking. But no, I'm neither down nor in despair nor suffering mightly although my side effects are mounting. In any case, I'm not concerned about discomfort, or, that is, pain and discomfort aren't factors in my decision-making process with this situation. I have a high threshhold for pain, I've weathered other health-related issues and injuries in my life and I deal with pain fairly well. My concerns--and they're concerns that come from a logical, considered, thoughtful process rather than an emotional one--are what problems am I causing now that will affect the quality of my life in the future? Because of my beliefs in a continuation of consciousness and reincarnation, I believe that both quality and quantity of life are important factors and that quality trumps quantity. I believe that it's possible to make decisions about how one lives--or dies--devoid of sentimentality or despair but in a thoughtful, personal, self-reflective and sensitive manner. I don't think of declining treatment, or to use a more common expresson (that I don't normally use), "Not fighting" as giving up, at least not in my case. I can speak only for myself and wouldn't presume to speak for another, but for me, there's no giving up, or not giving up, there are well-thought-out choices when all the evidence and facts are considered. These aren't opinions born of despair, they're opinions that I've always held, healthy or sick, treated for something or not. At the moment I'm in treatment and will continue to weigh my decision and will solicit input from those whom I trust and respect. In terms of the other issues raised, I feel that it would be unproductive to comment on those so I won't. We all have opinions--in reality, it's ALL that we have--and mine is as valid as yours and yours is as valid as the next guy's and all opinions are equally valid because they're simply opinions. I'm a reasonably well-grounded person and I've not lost my footing in light of my current situation. If I've given that impression, or that I'm sunk in despair, then that's my mistake and I'll try to correct it, and I thank all for their thoughtful and kind words of encouragement.

pializ
Posts: 302
Joined: Nov 2012

Oh yes!!! I can relate to how you feel about the treatment regime. I guess in years to come they will look back on the protocol and how caustic it is and think 'what were they thinking?'. However, like you and most others, I have had to accept that's the best there is on offer at the moment.
Good luck!

Angela_K
Posts: 374
Joined: Jan 2011

Just like you, by the end of the first week, I was already experiencing major chapping. Med onc blamed it on radiation. Radiation onc blamed it on chemo. We finally decided it was a skin reaction to the chemo, along with some hives and severe itching on my chest and back of my neck. I spent 90% of my time naked from the waist down, bent over my hotel room fan. :)

My rad onc doctor said absolutely "NO" to diaper wipes of any kind and instead insisted on me using the peri-bottle to rinse myself after using the bathroom, taking a sitz bath after every bowel movement to keep myself SUPER clean, trying to urinate in the sitz bath for the same reason or urinate while squirting with the bottle to keep the urine from having any contact with skin, blotting dry with paper towels, and airing out my bottom as much as possible. I also used some prescribed ointment of some sort along with zinc free A& D ointment and Aquaphor. It was exhausting!

But it worked.

I had to stop radiation after the 4th week due to low blood counts, so I gave my bottom a much needed break for about four days, which really helped me attack in that final stretch!

And . . .I used pure, unscented coconut soap to wash off ointment goop every morning before radiation zaps.

Hope this helps to know that you're not alone and that it sounds like we both have very, very special asses!

Blessings.

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