Nuclear Winter: An HS Diary

I know I don't post regularly, but that's only because I'm doing great! As always, I encourage you to read my blog to learn about radiation for HS, and write me with any questions at bradley.moller@gmail.com . And to those who've contacted me in the past and may have changed their emails or lost touch, please send me an update--I'd love to hear from you!

All my best,
--Brad

Hello again,

I'm always happy to get an email from a new person about to embark on the radiation process. Not happy at all that anyone has to do this, but glad that another person is taking the leap and that I can help in some way. Keep the questions coming--I'm always ready to answer questions about radiation protocol or any aspect of dealing with the treatments, etc.

I don't have much new to write myself--but I do want to stay in touch and report in now and then so the Yahoo Groups, HS-USA.org and others can be assured that I am doing well (great, actually) and to keep my link live, please!

My best as always.
B

Hello everyone,

Just checking in with everyone to say that everything is still great. I have feared writing or talking more specifically about how it's great because I don't want to jinx anything, but by great I mean that I have had two or three small, almost painless nodules in the past four years. Yes, my skin is a little dry, I got telangiactasia (broken capillaries) where the radiation fields overlapped, but I so cannot complain.

I wish you all the best. Please write me with any questions you might have, and if anyone is in the NYC area, let me know!

Hi everyone. Just in response to readers who write with questions and who are wondering how I am doing, my skin is great. I've graduated from law school, taken the bar exam, have started work, and am continuing to heal psychologically from the awfulness you all know too well.

If you have any questions, please don't hesitate to write. bradley.moller@gmail.com

Hi everyone,
So shortly after I last posted, I did decide to go back and get the two little spots that had not gotten enough radiation re-treated. I got 14 treatments, not the full 20 since your skin never really forgets radiation that it has received in the past. My RO was great in understanding that even though 98% of my skin was totally cured, I wanted this area, which was the part in between the thighs that rubs back and forth, to get totally cured too.

It's been more than a year since, and it's been great--all of it. No matter how long it's been since I got my life back, though, it's hard to say it's great, because I always worry about jinxing it, but it's worth it to tell all of you, if it will help in educating you about the pros and cons of radiation. It's been almost three years since I was treated on nearly 30% of my body for HS--I had dropped out of law school, was unsure I'd ever sit again, be able to do normal things like work, wear jeans, take a bus ride, go to a movie, or to the gym, walk for more than a few blocks or in more than 50-degree weather. My life was consumed with trying to figure out what food could hurt or help, what supplements I could take, all of it.

And now, slowly but surely, the mind readjusts. There was a lot of scar tissue around the tailbone, which hurt no matter how little pressure I put on it, and no matter that there was no active HS there anymore. Now, I get migraines often enough that I need preventive treatment for them, and several drugs, like Topamax and the tricyclics, also help with neuropathic (nerve) pain. Coincidentally, it really has helped the pain in the tailbone, as a lucky, bonus side effect.

The only side effects of the radiation treatment thus far have been that, with doses above the normal 40Gy, you get telangiactasia, or the red type of spider veins, little blood vessels like you see on the noses and cheeks of people as they grow older. This is treatable with cosmetic lasers, if it bothers you. I've finally decided to go to a dermatologist and have mine treated, because it is a pretty wide area that is affected for me.


Please email me with any questions you have regarding radiation treatment, or anything about HS (since I will always, unfortunately, be a lay "expert" on the subject) at bradley.moller@gmail.com. I am happy to help, and happy that I get to share a happy story with you!

*For the full story, read from the bottom, of course!* All my best....

My friends,

After I did the test patch, I did the whole thing, well half and half, but eventually the whole affected area. I’ve added this accumulation of the radiation posts:

I have not written since I started my treatments. My RO is irradiating the whole affected area, all at once. That means everything from my waist to my mid-thigh, with a shield (the technicians refer to it as the ‘jewel box’) covering my private areas. It’s a big area, and difficult to get it right, especially in only four positions/fields--1) anterior (front); 2) posterior (back); 3) right lateral and 4) left lateral. The groin is exposed in the front field, and the inner thighs and perineum are covered half in the anterior field, and half in the posterior. When in the posterior position, the technicians tape open my buttock cheeks, using the table as support (I ask the technicians . These two areas—the front and back—are done with the biggest field there is, the 25x25cm cone. Now, lest you think I have the frame of a pre-adolescent, it is effectively much bigger than 25x25, because they lower the table all the way down, going from the principal 100% field (which is the ‘SSD’ of 100) to an SSD of a little more than 140. Because this is a much bigger area, to keep the effective radiation at a constant, the physicists adjust by increasing the dose coming out of the linear accelerator. Thus, per square cm of Brad’s skin, let’s say, the dose is not diluted. Where the field borders meet are what are called match lines, which are drawn every day with a marker, as every day is a little different (how my leg is turned, how much the butt cheeks are taped open, etc.). The technicians try their best to not overlap, but if there is a little overlap, the constantly moving match line ensures that the overlap isn’t always in the same place.

We are following the blessed recipe passed on to us by Radiation Man, Rad Woman, EJ, and their radiation oncologists. That is, 20 treatments of 200cGy (200 rads) each, for a total of 4000. As part of this recipe, we use a 1cm bolus, which brings the most intense radiation (the ‘D-max’) up nearer to the skin surface. (For further technobabble about this particular facet, read on; otherwise go to the next paragraph.) Electron beam can be produced to penetrate to different depths beneath the skin, following the variable of MeV. Whatever the MeV value, divide by two for the effective depth in centimeters. So, at 6 MeV, the shallowest produced by this linear accelerator, just about all the radiation is absorbed by the 3cm of tissue closest to the skin surface. This is the strength we are working at, as did the prior patients. The 1cm bolus acts like 1cm worth of skin (it is the same atomic number as skin) and thus the resulting penetration of skin is only 2cm, which is the 4/5 inch that the others have spoken of. (For a great webpage on this that makes it easy to understand, click on my link for Electron beam technical info.)

Bolus is flexible in that it bends, but it does not contour to the shapes in our body. So on the front and back fields, the technicians use an old trick: instead of 1cm bolus, they use two thin hand towels, each folded once and soaked in water, to make a 1cm covering. This molds very well in the groin, around the leg, even between the butt cheeks! And it’s nice and warm in the sometimes chilly rad room.

I’m having about 25-30% of my whole body’s surface area irradiated. It’s a big deal. Generally, I’m a little tired and need lots of fluids to catch up with their depletion. Tomorrow will be my LAST DAY, Number 20 of 20 treatments. I’ve been keeping daily notes to give you guys, to understand the radiation timeline in more detail….

Session 1: There is itching immediately, which Dr. L says is not the skin tissue reacting yet, but the hair follicle itself getting irritated. I asked if I could take Benadryl to ease the itchiness (which threatened to keep me up all night), but he said that he would like to keep other treatment topical for now, and recommended pure kitchen cornstarch.

Sessions 2 and 3: More itching, more cornstarch.

Sessions 4, 5, 6: I start getting a general feeling of tiredness, accompanied by transient bouts of nausea. I don’t know if they were radiation related, because they stopped after this.

Sessions 7, 8: There is perceptible change in color on some parts of the skin.

Session 9: The first HS scar starts opening up—it looks like a scrape. It happens to be in the groin, which is not wholly by chance. For reasons I don’t fully understand, grooves like the groin and between the butt cheeks act as natural boluses. Also, there’s more friction in these areas, and the skin breaks down faster there. Also, the scar breaks down first because, as I’ve written previously, the scarred skin reacts more quickly and more strongly to the radiation, as we’ll later see.

Session 10: the skin all over starts to feel dry, a bit taut. This even though I have stopped doing my 2 or 3 a day alcohol swabbing, and have stopped using a drying soap. The color’s a tiny bit darker as well. I still put cornstarch to ease the itching, and take a couple of Benadryl before going to bed.

Session 11: The skin may feel dry, but no more alcohol + no acne soap = clogged pores, and the beginning of new lesions. Many of them, in fact. This reminded me of the old days, before I discovered the rubbing alcohol. Unfortunately, I cannot follow my old regimen during radiation, so that’s of no use! I’m still on antibiotics, and I may have to take Aleve to keep the inflammation down.

Session 12: There is noticeable hair loss. In fact, I have a new party trick, if I had such a party to show it off: the hair comes out in clumps—you don’t even have to pull on it. There is more irritation in the creases (groin, buttock). Itching is sometimes insanely excruciating.

Session 13, 14, 15: The pain increases as the creases start opening up. This is still mild pain—no need to take medications yet. In fact, things seem to be progressing all too slowly. While there is a difference in color and texture, it is so slight for 15 sessions.

Sessions 16-20: redness and irritation a bit, but pain comes after. Most hair out by now.

*I convinced my doctor to go another 4 days of treatment, for 24 total, and 4800rad. My skin was not getting dark enough, there was still too much hair on the skin, and I didn’t want to realize only later that we needed more. He went along with it. I know I’m going to pay in pain!

After last treatment, hair keeps falling, skin gets redder and more irritated, then starts hurting. The peak of pain is 7-10 days after end of treatments: at this point you really do need medication, and there are a couple days where sleeping is very difficult—it’s like a bad sunburn. You’re fatigued, you’re dehydrated, you feel like you’re abusing your body. But you’re actually helping it. really!

One month later, the skin is healing nicely. Everywhere, that is, except for these two symmetrical spots on the inner thighs where there was an overlap (stupidly) and that skin got twice the dose, and is probably going to be permanently damaged to some extent. DO NOT MAKE THIS MISTAKE! If it weren’t for that, I’d have all new skin by now, but healing is slow in those spots.

Three months later, I’ve gotten one lesion, an old one that decided to pop up and burn out. That’s it.

Six months later, nothing! Doing very well, fingers tightly crossed.

One year later, doing great. Only thing that pops up are two spots that were in flexural areas, and didn’t get enough dosage. Very small pimple-type lesions come up there, which is nothing, except on upper part of inner thigh which rub up against each other. I should at some point get touch-ups there. But other than that, looks great.

18 months later. Same thing—everything is great, except for those two spots. I keep waiting to see if something else pops up before I go back to touch up those spots, but nothing else does. I still haven’t made it back to the doctor, though, because the prospect of another 20+ treatments seems hard to fit into my once again busy life. But I must do it, just to complete the journey.

Okay. So I had my one-month follow-up with my doctor on the test area. He asked me questions about how the skin responded to the radiation, and asked me what I think of the progress. I explained that it looks and feels and acts like very different skin. I haven’t put anything topical on it in two months, and yet it hasn’t flared up at all after the mild ‘melting’ away of several lesions around the middle part of treatment. He agreed that it looked good, and asked me what I wanted to do. I was honest and said that maybe a little more time is needed to really know for sure, but I thought it was great and would like to get started as soon as possible. We made another appointment for three weeks, at which time he will examine again and if good get started.

Now the frustrating part. My RO doesn’t want to do the whole thing at once (yes, again). He first said that it would be too much of an ordeal to do all at once—an ordeal that, I explained, I was prepared for. He then said that he wanted to do one half at a time, or by a total skin process, whereby you stand back and let the electron beam defract enough to cover the whole area. This, of course, cannot get to the groin, between the thighs, inside the buttocks, etc. I explained that to him—that I expected to be doing this in pieces—probably about 8, given the limits in beam size. He then told me that, in all honesty, the reason he did not think it was possible to do it all at once was that it wasn’t fair to the technicians to spend nearly an hour every day on one patient. I’m not sure what that means, but I’m going to let him think this over, as he said he would, over the next three weeks. I traveled a long way each day to do an 8x8cm area, because I wanted to get the whole thing done. Now I may have to travel 40 more times instead of 20—four more months instead of two. I do feel very lucky to be here, don’t mistake that for a second. But I need a better excuse than that to put off doing the whole thing. The technicians’ job is to irradiate. If it takes eight repositionings for one patient instead of one position for eight patients, what’s the difference? I can understand if treating me would squeeze other patients off the schedule, but like I’ve said before, the hospital’s day is never fully booked. I can even understand, somewhat, if the doctor wanted to be paid more to do a longer procedure. But the hospital’s getting the insurance check, I assume. How the technicians’ time (which would be the same in total once the second half is done, probably even longer) is worth more than my avoiding the pain of a whole third round of pain and radiation hell, I don’t know. Again, did I mention the commute?

Oh, also, my RO thinks it’s very risky to try to align so many pieces, given that there is so much overlapping to avoid (the human body can handle about 60Gy, an overlap would give you 80Gy, causing real damage even to the sliver of overlap). Again, I’m just a layperson, but if you take the time to get it right, it should be okay, right? And again, isn’t it the technicians’ job to take their time to get it right? I think that we’ve all seen in our various jobs that it’s not always the most serious or most weighty tasks that demand the most time and energy. Sometimes, it will be disproportionate. Here, a dinky little (in an oncology department’s view) skin problem may not be as serious as any of the various cancers they deal with, but that doesn’t mean it’s not fair to spend more time on me. It’s only for twenty days (and, heck, I really really appreciate it!) Now, I don’t even know if this is what he meant, but in case it is I don’t buy it.

That’s it for now. It’s clearly not that bad of a dilemma: I know that I’m very lucky to have gotten this far, and to have gotten these promising results. I know that even if he insists on splitting it up, I could still by the end of June have a new ass. That’s perspective for you.

I ask any of the irradiated for their thoughts, especially Alan, who had to deal with lining up and the avoidance of overlapping. I assume others did, too (EJ, maybe?). Alan, I know Dr. B and his technicians took a lot of time every day aligning.

All my love to everyone.

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.

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.

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.

Seventeen of twenty are done! Three more sessions to go on the test patch, and what do I have to show for it? My skin is darker: my RO today said it looked "wonderful." The skin is feeling irritated, but not painful. It's a little dry, but smooth. There is some hair loss. I don't have to apply anything topical to it yet. I'm generally a little fatigued, but nothing else. My RO said that the pain will start soon and peak at one week after the last treatment. Concerning the state of the skin in the treated area, I had a moderate flare-up this week, and cannot treat it in any way, but I feel confident that the radiation will nuke it. According to the doctor, it is when the skin starts healing from the burn that we should see the lesions recede as well. Fingers crossed.

In response to Radiation Man’s question about hair loss in the treated area, the hair seems to be falling. It's a little tricky to tell however, because I had done three sessions of laser hair removal on the whole HS-affected area. For those not familiar with laser hair removal, hair grows in cycles. If it is in an active phase when you're treated, then it's zapped and should not grow back (with a big asterisk). But those that are not active, they come back when their cycle demands. Thus, I didn't have much hair at all in the area, and was growing new hair while getting treated, so I don't know yet, but assume that's a standard biologic response and it will go away.

Also today, Lauren M. wrote the HSWorldwide group about her harrowing troubles healing from wounds caused by her radiation. I thank her for the time she took in letting us know how she is doing, and the honesty with which she described the travails. She posits, supported by others, that the more sinus tracking present, the more viciously one’s skin will respond to a full course of radiation, and the more difficult healing from it will be.
On the brighter side, Lauren reports that there is little to no drainage from her HS, that it was burned away by the radiation. Unfortunately, her present pain is so bad that this seems little comfort to her. I truly hope that she will drastically improve, and that soon she will feel so good that she’ll forget this extra stage of hell ever had to happen.

Lauren, my best.

Twelve treatments—no pain, a little dryness. About my skin being ahead of schedule, one of the therapists looked at me today and thinks that I’ll be able to make it through all 20.
A nurse met with me to discuss whether I should be applying anything topical yet. She warned me not to put anything on it except, if necessary to keep the area dry, pure cornstarch—the kitchen kind. This means not baby powder, or J&J’s “pure cornstarch,” as it will have other things in it, including fragrances. The reason the treated area must be kept dry is to minimize the chance of yeast or fungal growths/infections on the site.

So I’m halfway through the test patch, and I don’t feel a thing yet. Dr. L says that by next Wednesday or so, I will start to hurt, and I must say I’m looking forward to it. After the treatment was over, and I was walking away, one of the therapists asked if I had any questions, and that he’d be worried if I didn’t! I actually did have a question—why the ‘tan’ lines of the test patch area are not sharp, as I expected. He said that, depending on how much my skin is spread (legs up or down for example) slightly different parts will get irradiated even if the three tattoos are matched up each time. Dr. L had more time today to speak, so I brought up a couple of things.
First of all, I wanted to run by the idea of maybe soon slowing down treatments to 3 or 4x a week in order to reach the 4000 rads total. He explained that every individual’s biologic response is different, and so for cancer patients, 3400 rads and 4400 rads can produce the same effective response. I suggested, however, that maybe there is something qualitatively different about the fractionating of the radiation treatments in HS, and maybe that’s why it’s good to get the twenty treatments in. Also, I reminded him that I WANT to burn the skin, as it seems the way to knock out the HS. He said that we will wait and see.
My second question to him concerned the cystic acne that I’ve developed on my face in the last few months. I last had it in high school, at which time I took Accutane and saw my face clear up completely for seven years. So the question was, can I take Accutane again (to readers—I had great success with Accutane on my face back then, and I had minimal undesirable side effects… but I don’t recommend it without knowing how anyone else reacts to it). Dr. L said that it would be fine to go on Accutane while getting radiation, and that it is sometimes used as chemotherapy itself, prior to radiotherapy, as an adjunct and helper in getting cells to react to radiation. I thanked him, though I am still going to try Retin-A for a few months before I go through Accutane again (and it may be better to do Accutane in the warmer months anyway).

Another day, another 200 rads (my eighth treatment). Today Dr. L looked at me and said, “Doesn’t look like you’re going to make it to 20 treatments. Maybe 15 or 16, but probably no more.” He sees an “early skin reaction,” an accelerated reaction which should result in a burn too quickly to finish. He didn’t have much time today to talk, but I will suggest spacing treatments out like our irradiated HS friends here have done. Either way, I’m hoping to prove him wrong and get to 20.
Wait---but before treatment today, I had to run around to find a dermatologist who was open on MLK day to I&D this very large lesion on a non-radiated area. I was successful, but I got a taste of what fighting on multiple fronts will be like in the months ahead.

Trivia for the day: one of the therapists explained to me that the bolus is made mostly of water so that it has the same atomic number as human skin (thus mimicking it as well as possible).

Day 7! More than a third of the way through the test patch. Things are good in the test patch zone, but other areas are suffering. Luckily, I can still have IL steroid injections there, and I may need to I&D one recurring lesion. In writing this, I have tried so far to avoid the usual HS topics, for example how much I hate the disease. We are fortunate to have so many positive-thinking people in the HS-USA and Yahoogroups communities, and through them so much of the suffering seems to take on constructive meaning. But every one of us, I am sure, has expressed frustration, and anger, at this disease, our affliction (for some of us, but one of many). And it's good sometimes to do so. I hate hidradenitis suppurativa. I have very little hate or anger inside me--but what I do have I want to aim HS's way. It has done nothing except disappoint me, sadden me, discourage me. It has kept me away from friends, from family, from events, and activities. It has caused more pain in three years than ANYONE has to go through in a lifetime. I am 25 years old, but can't do things 80 year olds can do. And I'm not even talking about sitting, just mere sitting, which we 21st century humans do more than anything else, yet some of us cannot. I have not sat down without pain since the first day my first lesion started suppurating. Think of all the secondary problems caused by HS--besides the documented ones like carcinomas, rectal complications, arthropathy. I'm talking about so many smaller things: Persistent cramps, muscle pain, etc. from unnatural sitting and sleeping positions. Dry, cracked hands from washing so much, applying topicals, swabbing with alcohol. Last year I got out of bed and broke a toe because the position I had slept in during the night because of HS caused me to lose feeling in my right leg, and so when I got out of bed, I fell and broke my toe. Moreover, sleeping on my stomach (which I have to do) has caused misalignment of my jaw, causing TMJ, leading to grinding my teeth and chronic tension headaches. Recently, in trying to figure out if diet played a role in the condition, I ended up losing 30 pounds over five or six months, 30 pounds I should not have lost. And who knows what years of antibiotics have done to my body? I'm sure there're more, but it's getting late.
Sorry to get off topic! My test patch skin seems to be getting a little darker, though I'm not sure, as I expect a square that is darker than the surrounding skin, and I don't see that yet. (Photos will go up in the Hidradenitis Yahoo groups soon.) Today also I spent more time in the control room waiting for my turn, and got to ask some more questions, this time about some of the safety mechanisms more specifically. The therapists showed me how if you enter any data that does not conform to what has been programmed for you, you'll get an error message. If the machine is not in place, same thing. I asked if one could get photon instead of electron by mistake, or 2000cGy instead of 200Gy, etcetera, but the therapists said there is very little you can change from the individualized presets. I kept apologizing for all the questions, but they said that if it was their body, they'd want to know, too. All my best.

Day 5: 200cGy x 5. We're a quarter of the way there! The skin's getting a little dry, but no color change as far as I can see. I got a little tour of the control room today, and it's very neat. I learned a little more about the skin-depth variable, the MeV measure. I'm receiving the smallest number, 6MeV. With this variable, you usually divide by three, which gives you the centimeter depth at which maximum radiation occurs, deeper than which there's a pretty steep (I hope) drop-off in absorption. So, max radiation is at 2cm, or just about four-fifths of an inch. To bring "Max-D" closer to skin level, we use the 1cm bolus I posted about before, which mimics 1cm's worth of skin, effectively bring the Max-D to just 1cm below my skin surface, which seems just about right. The bolus looks like gelatin, and is taped on as the last step just before irradiating, after everything is aligned (tattoos and all).

So I made the usual 40-min. commute to the Hospital with my girlfriend today, and as it happened, before the patient before could be treated, the linear accelerator stopped working. This happens about once a month: because of the intensive safety measures built into the hardware and software, any glitch no matter how small or irrelevant (like today's, which did not affect electron-beam) will shut down the machine, and there's nothing to get it going but fixing the problem. Nothing like a reassuringly safe linear accelerator to keep you from being pissed off about traveling all the way there for nothing!
PS: part of the reason for so many precautions: the Therac-25 accidents in 1985-87....check out the sidebar link.
Don't let this frighten you, but instead reassure you of how much more unlikely something like this would be now.

I forgot to mention yesterday that I had decided to make a sperm bank deposit, even though the chances of this treatment seriously affecting my sperm count in the long term are almost none. It's for all the people in my life to whom I would not be able to say, "Look, I just don't think I need to." So today, I did so, and may have to go back at least once more.

Day 2 went like day 1. Smooth, simple. While radiation delivery itself is so quick, I really enjoy the time getting to know the therapists and nurses. They are friendly and patient and thoughtful in a way that I did not know medical personnel had the energy or time to be. A lot of it is due to the fact that they are well-staffed and not fully-booked with patients. Everyone should be so lucky!

I met with a nurse who explained that I should cease all topical treatments in the test patch: no more 2 or 3-times daily rubbing alcohol swabs, Cleocin, no washing except with Dove (which, if she knew HS, she would not have recommended!) no moisturizer except a radiation oncology favorite, Aquaphor. (Moisturizer? It's going to have to get real dry before I can fathom adding any more moisture to my hidradenitis-kissed skin). I asked her how much pain to expect in the first couple of weeks, and she said that it would take that long to really start feeling the effects. When she said that some people don't hurt that badly even through the end, I realized that she may be thinking x-ray, and/or of normal, non-HS-damaged skin. I expect to get red, and hurt. Indeed, I DEMAND to get Burned! It's looking like that's the way to get better, though I don't know if Dr. L will accept that as a reason. All my best to all.

PS: the tingling in the leg hairs is indeed due to a build up of static electricity. This has been confirmed by a medical professional. It happened again today.

I'll get used to this blog thing--finding my voice, that is. None of this sounds natural, but I'll settle in.

Today was the first real day of radiation. 200rads to the test region. The machine is so precise: it lines up with the tattoos, either by moving this giant, space-age rotating arm, or by moving the table I'm lying on in a circular fashion. You've got to see it firsthand to really appreciate how cool--and comforting--it is. Well, you can check out the manufacturer's photo and info in the CLINAC 2100 link in the sidebar.

When the linear accelerator starts, and the radiation begins beaming, there is a funny tingle that goes through the hairs of your legs; I'll ask about this tomorrow (as it may just be in my head). Anyway, following Jim's very welcome advice, I asked for a shield to cover my scrotum et al. Luckily, I will not have to treat the testes straight on as he had to, but I will insist on the shield every day. 200rads takes about 1/2 a minute. That's it. It's a 30-45min. commute each way every day to go in for 30secs of e-beam, but I'd drive two hours if necessary. That reminds me of the staphage lysate stories, and how fellow HS'ers would commute hours to Hershey, PA to be in those trials.
Clinical "trial?" Every day is a trial with us, and each of us, it seems, is both clinician and subject. We HS'ers are thousands of one-person clinical trials, spread over the globe, what with our tea tree oil and manuka honey, gluten-free and no-MSG diets, our Omega-3 supplements and Brewer's Yeast. We may fumble, and we may fail, but we're a suprisingly organized group, sharing our data and advising each other. And we're damn hopeful. My radiation trial is just one more, and I hope by sharing this info I can help too. Again, if any of you have questions, just ask, especially if they're ones we don't readily have answers too.

Simulation Day today. We just went through the process, as it will be done for real starting tomorrow. Dr. L pointed the radiation therapists to the exact location of the test area; I got three tiny tattoos to ensure precision over the twenty treatments.

Thanks to so many for writing me with encouraging words. It's much appreciated.
A few things. First of all, yesterday I somehow overlooked thanking someone who should be thanked most of all--Tammie, for being so encouraging and informative, and for creating opportunities where obstacles seemed to exist. I am very grateful.
Second, a few people wrote to ask or comment about my citing my RO's "zero" increase in cancer risk assessment. It should be noted that a) this applies to electron beam radiation at the dosage of 40Gy and b) that Radiation Man's and Rad Woman's ROs agree with this assessment, which is also corroborated by dozens of research papers following thousands of keloids patients who received higher doses of electron beam, not one of whom incurred a radiation-induced cancer over a 30-year period. This is very important information, especially to many HS members currently on the fence about this treatment option (as I surely was). Again, according to many ROs, this dosage of electron beam radiation at this depth does not increase risk of secondary cancer. Now, Jim's RO told him that there was a 10% increase over a lifetime, but the RO may have been speaking of photon (x-ray) instead of electron.

It worked!
I sat down with Dr. L, and told him about my HS, which he had treated several times before, with disappointing results. It turns out that he had done one or two sessions, at 10-15Gy each, as is done for keloids. I explained that Radiation Man, Rad Woman, and others have done 200cGy, or 2Gy, fractionated over 20 treatments (for a total of 40Gy). He said that this was in fact a lower total effective radiation than 2x15Gy, because it is fractionated such. However, he granted that there may be other benefits to spreading it out like that.
Dr. L took a look at me, and his first question concerned whether I have Crohn's Disease. I explained that while I had not had it clinically ruled out, I didn't have any reason to think I did. He took photos with a digital camera, and then showed them to me as he told me what he wanted to do. "I want try a test area, 10x10cm. We will do the full 20 treatments, for a total of 40Gy. Then we will wait a couple of months, and if the results are good, I will treat the whole affected area." I asked him why this was, and he told me that the real thing is "an ordeal," and he would not put me through it if it didn't seem like it was going to work. It's better than nothing. Next we had to barter. Dr. L wanted to treat a square area above my tailbone, in the small of the back. Since that area has been quiet for a while, I thought that maybe it would not be a good area to test, since we may not know if it had improved or not. I suggested a very active area on one butt cheek, and he suggested we do the perineum (in between testes and rectum). Sure. Why not. I'm very anxious--let's just do this!!
I asked some basic, but critical questions:
1) Q: can we quantify future cancer risk of this dosage of electron beam, with 1cm bolus? And if so, what is it?
A: the doctor, who has done electron beam for non-cancerous skin diseases on hundreds of patients, said the risk is "Zero."

2) Q: Then why so hesitant?
A: To paraphrase him, because the treatment is a major pain in the ass.

3) Q: Since my HS is in the groin/buttock region, what is the future cancer risk to my testicles? Tail bone marrow? Lymph nodes in groin? Rectum?
A: Extremely low/ None.

4) Q: How about sterility? Should I consider making a sperm bank deposit?
A: No need.
Q: Even to placate my parents?
A: Really, no need.
[I think I will do so anyway]

So....first appointment is Jan. 6, 2004. Fingers crossed.

Hi there.

So I've started this blog, as an easier way to get everybody in the different Hidradenitis groups to follow my radiation treatment (if that happens--we'll see).

A little about me: I'm 25 years old, of normal weight, a very healthy eater, and have no other health problems. I was a first-year law student until a few weeks ago, when my HS got bad enough that I really could not keep simultaneously fighting it and what some people consider to be "the most challenging curriculum in higher education." Whatever--law school's really not that bad. I mean, I almost made it through a semester, having read every word of every assignment, while being beseiged daily by this disease. Over the semester, I spent more time at Health Services than I did in class for any one of my subjects. I spent hours in the morning and night tending to my angry skin.

Today I made an appointment with Dr. L, a radiation oncologist. It's for next Weds., and I'm quite excited. Over the phone, I told him, simply, that he could change my life. It worked as far as getting an appointment. I hope I can convince him to give me a try.