Nuclear Winter: An HS Diary

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.