Friday, February 20, 2004
So my last post sparked two inspiring responses from two of our radiation heroines, EJ and Nora (Rad Woman). These are their postings on the HSWorldwide board.
From EJ:
>>>Bradley!!!
Congrats on getting that "free" feeling. It's like getting your life back. And
I could totally relate to your take on the pain. I did it with vicodin and I
could have used something stronger. If you are having this reaction to a 8 cm
square, get the help you need up front. I know how great you feel - but slow
down. You didn't get HS in one day and it isn't gone in one day either. Please
give your body some time to relax and regenerate. I told my radiologist today
that I wish I'd gone slower after radiation. I felt so wonderful, lead shoes
couldn't keep me down. Continue to protect your body like the shrine it is.
Your health is your wealth.
I am so proud of what you have achieved.>>>
And from Nora:
>>>Hi Brad,
This is Nora (Radiation Woman)!
It was wonderful to see your posting and learn what is occurring in your
life! How exciting it is to see the progress you have been making!!
I believe the most remarkable aspect of your posting is the optimistic
attitude that you demonstrate regarding radiation and HS. Although it is agreed
that we are in unchartered waters on this matter as far as years of empirical
data we are nevertheless with a lot of fantastic results!!
It has been such a life-changing experience for me to have undergone
radiation for HS; I cannot emphasize in mere words the difference it has made in
my daily life, Brad. I feel like a different person/woman/friend/HS'er etc...as a
result. I feel more in control of my life and more willing to take the risks
which are part of life. Before radiation I was so *desperate* and almost
"shutdown"---> just not believing that I could have a normal life. I felt that
HS was ruining my life; and in truth it was!! It was not until I took control of
the HS through aggressive radiation TX's via Dr. Pedapati's care that I was
able to see that I did not have to be victimized by HS any further.
Yes, it is a "rush" to be on this journey! I am still on this journey, Brad.
I am telling you and others the truth when I state that I would do it all over
again in a New York minute---> as I have "ME" back again!! The Nora who
would dance, laugh, dare to challenge others personally and professionally,
reflect and ponder with a mission....I am a force to be reckoned with in a good
way! I want others who suffer with this disease to know that the prudent use of
radiation can end their misery and hellish existence also. The temporary pain
of radiation is worth the long-term benefits of *not* having to live a life
filled with narcotics or pain killers due to HS!! When I have discussed the
cases of HS'ers who have undergone radiation to be met with less than successful
results (discussed them with Dr. Pedapati)--> his response is that, "The
radiation *must* be aggressive, there is no 2 ways about it." I have had private
e-mails from **many** people asking me for intervention ****after*** the less
aggressive radiation has not worked----> when one is disappointed in the results
or blaming radiation as not being curative! My response to this is that one
need only look back on the "Radiation Woman" story and read that my radiation
dosage and frequency is exactly put forth as it happened...no mincing of my
words. Also, Dr. Pedapati has made himself available to anyone who has called
him for consultation!
We HS'ers want to go with a radiation regime which has been proven to be
successful--> one that is safe and medically sound. If one is in doubt; get a
2nd opinion. Get a 3rd opinion. Do what you need to do until you are comfortable
with the MD that you are putting your **life** with!! This ***is** YOUR
life....do not shift this responsibility away from its owner!! Yes, there are
quacks out there, there are also very fine and caring, compassionate healthcare
providers who will walk the walk and take your hand as you take the walk!! I
happen to be one of them!! I do not abandon my patients. Look for this in your
healthcare provider. If you cannot find it in your area---> you can come to
Illinois and live with me as you make further informed decisions (there is the
University of Chicago, Swedish American Hospital , etc.). You have options. You
are never without options....use them!! Keep pushing the envelope. Keep pushing
yourself!! Believe that you deserve a great life and wonderful things-->
because *you* do, indeed you most definitely do!!!
"The chief pang in most trials is not so much the
actual suffering itself as our own spirit of
resistance to it."
----- Jean Nicholas Grou
Much Encouragement, Support and Love to All,
~*Nora * Waynemann*~ >>>
I am so thankful for the support that these two, and everyone else who has written, have offered.
From EJ:
>>>Bradley!!!
Congrats on getting that "free" feeling. It's like getting your life back. And
I could totally relate to your take on the pain. I did it with vicodin and I
could have used something stronger. If you are having this reaction to a 8 cm
square, get the help you need up front. I know how great you feel - but slow
down. You didn't get HS in one day and it isn't gone in one day either. Please
give your body some time to relax and regenerate. I told my radiologist today
that I wish I'd gone slower after radiation. I felt so wonderful, lead shoes
couldn't keep me down. Continue to protect your body like the shrine it is.
Your health is your wealth.
I am so proud of what you have achieved.>>>
And from Nora:
>>>Hi Brad,
This is Nora (Radiation Woman)!
It was wonderful to see your posting and learn what is occurring in your
life! How exciting it is to see the progress you have been making!!
I believe the most remarkable aspect of your posting is the optimistic
attitude that you demonstrate regarding radiation and HS. Although it is agreed
that we are in unchartered waters on this matter as far as years of empirical
data we are nevertheless with a lot of fantastic results!!
It has been such a life-changing experience for me to have undergone
radiation for HS; I cannot emphasize in mere words the difference it has made in
my daily life, Brad. I feel like a different person/woman/friend/HS'er etc...as a
result. I feel more in control of my life and more willing to take the risks
which are part of life. Before radiation I was so *desperate* and almost
"shutdown"---> just not believing that I could have a normal life. I felt that
HS was ruining my life; and in truth it was!! It was not until I took control of
the HS through aggressive radiation TX's via Dr. Pedapati's care that I was
able to see that I did not have to be victimized by HS any further.
Yes, it is a "rush" to be on this journey! I am still on this journey, Brad.
I am telling you and others the truth when I state that I would do it all over
again in a New York minute---> as I have "ME" back again!! The Nora who
would dance, laugh, dare to challenge others personally and professionally,
reflect and ponder with a mission....I am a force to be reckoned with in a good
way! I want others who suffer with this disease to know that the prudent use of
radiation can end their misery and hellish existence also. The temporary pain
of radiation is worth the long-term benefits of *not* having to live a life
filled with narcotics or pain killers due to HS!! When I have discussed the
cases of HS'ers who have undergone radiation to be met with less than successful
results (discussed them with Dr. Pedapati)--> his response is that, "The
radiation *must* be aggressive, there is no 2 ways about it." I have had private
e-mails from **many** people asking me for intervention ****after*** the less
aggressive radiation has not worked----> when one is disappointed in the results
or blaming radiation as not being curative! My response to this is that one
need only look back on the "Radiation Woman" story and read that my radiation
dosage and frequency is exactly put forth as it happened...no mincing of my
words. Also, Dr. Pedapati has made himself available to anyone who has called
him for consultation!
We HS'ers want to go with a radiation regime which has been proven to be
successful--> one that is safe and medically sound. If one is in doubt; get a
2nd opinion. Get a 3rd opinion. Do what you need to do until you are comfortable
with the MD that you are putting your **life** with!! This ***is** YOUR
life....do not shift this responsibility away from its owner!! Yes, there are
quacks out there, there are also very fine and caring, compassionate healthcare
providers who will walk the walk and take your hand as you take the walk!! I
happen to be one of them!! I do not abandon my patients. Look for this in your
healthcare provider. If you cannot find it in your area---> you can come to
Illinois and live with me as you make further informed decisions (there is the
University of Chicago, Swedish American Hospital , etc.). You have options. You
are never without options....use them!! Keep pushing the envelope. Keep pushing
yourself!! Believe that you deserve a great life and wonderful things-->
because *you* do, indeed you most definitely do!!!
"The chief pang in most trials is not so much the
actual suffering itself as our own spirit of
resistance to it."
----- Jean Nicholas Grou
Much Encouragement, Support and Love to All,
~*Nora * Waynemann*~ >>>
I am so thankful for the support that these two, and everyone else who has written, have offered.
Thursday, February 19, 2004
Radiation Update: two weeks post on the test patch
Hey there all!
So I’ve been derelict in my duties to report. I’ll try to make it up to you.
A few days after the radiation on the test patch was complete, the skin started to break down big time, starting at the places with the biggest lesion scars, and peeling out over the next few days, like digging your fingernails into an orange peel and prying back the rind. It’s actually a lot more interesting and subtle, from an aesthetic point of view, than that. At the same time, the pain started, and by a week post it was pretty bad. But instead of plateauing, it got worse, peaking at day 11. Now, I’ve had my share of large HS lesions, some of them very large (baseball-sized). But this pain was different than any lesion I had—more acute, but less frightening. I mean, you’re just really burned superficially, so you’re not so worried, but it hurt enough that I couldn’t sleep for three or four nights, even with the Vicodin ES. Keep in mind, this is a patch that’s only 8x8cm, albeit in an extra sensitive spot (the perineum). So I can’t wait for the real thing….it’s going to be a ball!
I joke about it, but it really is a ball, all this pain. I haven’t felt so optimistic, and so free, in years. I’ve only been treated on such a little part, and yet I am doing things I was so scared of doing before. I sit occasionally even when I don’t have to. I have dared to wear jeans and other pants with thick seams (which usually cause cysts on pressure points). I have re-incorporated a few food items that I had banned, as so many of us do, just in case it might work. And most important of all, I just feel less anxious, and more positive about things.
Besides the Vicodin, what else have I been doing? Dr. L gave me a cream called Biafine, which is indicated for radiodermatitis. It’s good for wounds, dryness, scaling, and so on. It stings a lot when you put it on, but it has clearly helped in keeping the area clean, protected, and moisturized. Now, a note about the pain, and why it happens. There is the underlying burn pain, which is bad. But where the severe pain comes from is from the deeper cracks in the skin. Back to the orange—you know when you take a knife to slice the peel around the orange, but instead cut too deep and slice into the orange? That’s similar to what happens when the irradiated skin, very dry and taut, is stretched and moved in normal everyday ways. It causes these deeper cracks that really hurt, and just have to be given more time to heal.
So yesterday the pain went down drastically, and today it’s not there anymore. However, an intense, excruciating itch began last night, and it was driving me crazy. But no cortisone for me, as we want to keep the steroids away from my repairing skin. Anyway, the Biafine seems to be keeping it in check. The skin looks so clear, and smooth (the whole top layer of skin is gone!) but I can still feel a few raised scars, and I know that shouldn’t worry me but I hate to see they’re still there. For the itchiness and also just to soothe the skin, today I bought the Aveeno bath soak stuff that Rad Woman wrote of so glowingly in her reports. I will use it tomorrow some time.
It may sound like I’m complaining, but I’m not at all. I loved the burning of the skin, I loved the pain, I love the itching. I’m going to keep my arms outstretched and welcome whatever radiation brings. Because it’s my best shot yet, and I’m taking it, with all of you, for all of us.
My love to each of you. Write me with any questions. Have a great weekend.
Hey there all!
So I’ve been derelict in my duties to report. I’ll try to make it up to you.
A few days after the radiation on the test patch was complete, the skin started to break down big time, starting at the places with the biggest lesion scars, and peeling out over the next few days, like digging your fingernails into an orange peel and prying back the rind. It’s actually a lot more interesting and subtle, from an aesthetic point of view, than that. At the same time, the pain started, and by a week post it was pretty bad. But instead of plateauing, it got worse, peaking at day 11. Now, I’ve had my share of large HS lesions, some of them very large (baseball-sized). But this pain was different than any lesion I had—more acute, but less frightening. I mean, you’re just really burned superficially, so you’re not so worried, but it hurt enough that I couldn’t sleep for three or four nights, even with the Vicodin ES. Keep in mind, this is a patch that’s only 8x8cm, albeit in an extra sensitive spot (the perineum). So I can’t wait for the real thing….it’s going to be a ball!
I joke about it, but it really is a ball, all this pain. I haven’t felt so optimistic, and so free, in years. I’ve only been treated on such a little part, and yet I am doing things I was so scared of doing before. I sit occasionally even when I don’t have to. I have dared to wear jeans and other pants with thick seams (which usually cause cysts on pressure points). I have re-incorporated a few food items that I had banned, as so many of us do, just in case it might work. And most important of all, I just feel less anxious, and more positive about things.
Besides the Vicodin, what else have I been doing? Dr. L gave me a cream called Biafine, which is indicated for radiodermatitis. It’s good for wounds, dryness, scaling, and so on. It stings a lot when you put it on, but it has clearly helped in keeping the area clean, protected, and moisturized. Now, a note about the pain, and why it happens. There is the underlying burn pain, which is bad. But where the severe pain comes from is from the deeper cracks in the skin. Back to the orange—you know when you take a knife to slice the peel around the orange, but instead cut too deep and slice into the orange? That’s similar to what happens when the irradiated skin, very dry and taut, is stretched and moved in normal everyday ways. It causes these deeper cracks that really hurt, and just have to be given more time to heal.
So yesterday the pain went down drastically, and today it’s not there anymore. However, an intense, excruciating itch began last night, and it was driving me crazy. But no cortisone for me, as we want to keep the steroids away from my repairing skin. Anyway, the Biafine seems to be keeping it in check. The skin looks so clear, and smooth (the whole top layer of skin is gone!) but I can still feel a few raised scars, and I know that shouldn’t worry me but I hate to see they’re still there. For the itchiness and also just to soothe the skin, today I bought the Aveeno bath soak stuff that Rad Woman wrote of so glowingly in her reports. I will use it tomorrow some time.
It may sound like I’m complaining, but I’m not at all. I loved the burning of the skin, I loved the pain, I love the itching. I’m going to keep my arms outstretched and welcome whatever radiation brings. Because it’s my best shot yet, and I’m taking it, with all of you, for all of us.
My love to each of you. Write me with any questions. Have a great weekend.
Wednesday, February 04, 2004
The test patch is done! It is dark, dry, and a little itchy, but not painful. Over the weekend, two sizeable lesions grew and very quickly melted to nothing, with just a little blood and plasma showing. It now looks as if they were never there, other than a red spot like when you scrape your knee. It is wonderful, but it doesn't mean anything yet--we have to wait and see how the skin is in the longer-term. I made an appointment for a month from now, when the RO will look at
it and say what he thinks. He said, however, that he will then want to wait another month, and that he will leave the decision to me, meaning he will go ahead on the whole area if I think the test worked (I already do, but will wait). I asked him what he thought, just from looking at it, and he said that it looks very promising. He added that the pain will come soon and peak in the next week, and in the two weeks after that, the visible side effects will start to fade, and signs of the lesions should too.
A note to everyone: this test-patch-and-then-the-whole-thing plan was not my idea, but a compromise I made to convince a doctor to try me. If you're thinking of radiation, and come across an unwilling doctor, this is another option. It makes the doctor feel more confident in the treatment plan, and it may provide you with an opportunity you may not have gotten otherwise. I'm very happy that I convinced Dr. L to give it a shot.
I said goodbye to everyone at the hospital the way I usually do, and I told them I refused to really say goodbye, since I intended to come back for another round (this is not a usual desire in radiation oncology departments, as I'm sure you know). I've said it before, but they are all truly great people--therapists, nurses, assistants, all of them, and I'm very grateful for their care.
Again, any questions, hit me. I'll keep the updates going.
Much health and happiness every day.
it and say what he thinks. He said, however, that he will then want to wait another month, and that he will leave the decision to me, meaning he will go ahead on the whole area if I think the test worked (I already do, but will wait). I asked him what he thought, just from looking at it, and he said that it looks very promising. He added that the pain will come soon and peak in the next week, and in the two weeks after that, the visible side effects will start to fade, and signs of the lesions should too.
A note to everyone: this test-patch-and-then-the-whole-thing plan was not my idea, but a compromise I made to convince a doctor to try me. If you're thinking of radiation, and come across an unwilling doctor, this is another option. It makes the doctor feel more confident in the treatment plan, and it may provide you with an opportunity you may not have gotten otherwise. I'm very happy that I convinced Dr. L to give it a shot.
I said goodbye to everyone at the hospital the way I usually do, and I told them I refused to really say goodbye, since I intended to come back for another round (this is not a usual desire in radiation oncology departments, as I'm sure you know). I've said it before, but they are all truly great people--therapists, nurses, assistants, all of them, and I'm very grateful for their care.
Again, any questions, hit me. I'll keep the updates going.
Much health and happiness every day.
