This is a weblog of my current battle against stage IV (metastatic) melanoma. I'm John Hall, a 24 year old hacker/geek/pilot in southern California.
One of my main purposes in blogging this is to alarm people into getting suspicious moles checked out by a doctor immediately. If you are even remotely concerned about anything on your skin, please make an appointment with a doctor today. You definitely won't regret it.
And remember that there is still a very good chance that I will recover from this. Melanoma is bad news, but it is not a death sentence. (Update: my case is currently in a partial remission.) (Update: no, actually it's not.) I have a strong feeling that this will be a monumental hassle but that I'll make it through in the end. Either way, though, I want to make as much noise about the experience as possible so that others can learn from my mistakes.
PLEASE DONATE TO THE FIGHT AGAINST MELANOMA
Some friends and I have formed an American Cancer Society Relay for Life team called Team Melanoma. Our main goal is to raise money for cancer research. Please donate to our team through the following page:
All money goes to the American Cancer Society. We're asking for our donations to be used for melanoma research.
A couple of years ago an unusual mole started to form on my left shoulder. I was mildly concerned, but didn't think enough of it to go see a doctor. It continued to grow, eventually stabilizing about a centimeter in diameter, occasionally bleeding slightly. I knew I probably should do something about it, but I didn't think it could possibly be anything bad (who, me, get skin cancer? never!), and feared getting bad news from the doctor, so I never went in.
Sometime in September I noticed a small blob under my collarbone. Perhaps a strange type of muscle knot? I kept telling myself that, but knew it was probably related to The Blob. I finally scheduled an appointment with my doctor (who I'd never seen before) for October 15th.
Dr. Douglas Hopper, who was seeing patients for my primary care physician on this particular Friday, broke the news. "I'm worried this might be a tumor. We need to be very aggressive about this."
Even though I sort of suspected him to say this, I felt my face go completely white and had to lay down for a few minutes.
We scheduled an appointment with Dr. Dinome, a local surgeon specializing in surgical oncology (tumor removal). The earliest appointment I could get was for the following Thursday. I didn't get a damned thing done at work that week; the best I could do was pace around the office and go for walks in the nearby park.
Thursday finally rolled around, and I nervously trekked to Dr. Dinome's 11th-floor office. She was still in surgery, but was expected back at any time. I took a seat in the waiting room, making every effort not to sweat too much blood on the floor. Messy to clean up, you know.
I'd done enough reading to know that certain types of skin cancer (squamous and basal cell carcinoma) are mostly harmless and others (melanoma) are Really Bad. Although there are certain typical growth patterns for these various types of cancer, there is really no way to tell them apart other than to take a sample and run a biopsy. I was somewhat dismayed to learn that I'd have to schedule a separate appointment for the biopsy; apparently it's not a procedure that can be done in the office.
Dr. Dinome took a glance at my mole and said she didn't think it was melanoma. I felt my stress level plunge from 150% to 15% in the space of five seconds. The mole would still have to be removed and tested, of course, but it shouldn't be a big deal. We scheduled the relatively minor outpatient surgery for the following Monday. I went home feeling much more relaxed.
The surgery was a total breeze. Dr. Dinome removed the tumor on my back, leaving a long, vertical scar, and a lymph node from my armpit. Although technically I was only under a local anaesthetic, I don't remember a thing. The most painful part of the experience was having the IV inserted; I've always become mildly nauseous around needles. A strange phobia, as I can skydive and hang glide with no qualms whatsoever, whereas a tiny poke in my arm can make me want to puke.
Dr. Dinome prescribed Vicodin for pain relief. It works really well, and made me feel really good (it's very much a narcotic, and an oft-abused one at that). Two 500 mg tablets really had me soaring; I don't know whether the pain actually went away, or I just didn't care. Either way, it worked. I can't say I entirely didn't enjoy it.
Biopsies usually take a couple of days. I could have gotten the results as early as Wednesday, but realistically I expected them on Thursday. Despite the good doctor's assurance that this wasn't melanoma, I was still sweating bullets, though perhaps not to the extent that I had been the previous week. I hovered over my cell phone, waiting for the phone call that would invariably dispell the dark cloud that had been hovering over me for the past two weeks.
It finally came on Friday morning. I'd just gotten out of the shower and was about to head out for work. Somehow I felt I should lay down for a few minutes. About five minutes later my cell phone chirped. It was Dr. Dinome.
"Hi, John, this is Dr. Dinome calling. Where are you, are you at home? We need to discuss your pathology."
Oh. *Shit.* If the biopsy had gone well, she would have phrased that much differently. I knew it was bad.
"I'm really sorry, but the tumor was a melanoma..."
The melanoma was about 8 millimeters thick, which is considered extreme. This meant that it had penetrated far beyond the top two layers of the skin. Additionally, the lymph node she extracted from my armpit was cancerous.
The next step would be a brain MRI and a PET scan. If both of those came back clean, the melanoma would be considered stage III, and we would treat it by excising additional tissue around the tumor site and removing more lymph nodes. We'd probably still follow up with chemotherapy just to be safe.
I emailed in sick and went for a long walk. Along the way I called my parents and explained the situation. I'd held off on that until I had a definite diagnosis, not wanting to cause undue alarm.
We were able to schedule the MRI on the same day (Friday). This would hopefully rule out the possibility of a brain tumor, which would be an absolute worst possible case scenario.
I went to the St. Johns MRI building on Santa Monica Blvd for the test. It's easy to pick out by all of the extra electrical and cooling equipment outside.
MRI stands for Magnetic Resonance Imaging. The basic idea is to enclose the body in an extremely powerful magnetic field, on the order of 1-2 Teslas, enough to move all of the body's hydrogen atoms into the same orientation. The MRI machine then "pings" the body with precisely guided radio frequency energy and watches for the returned signal as the hydrogen atoms excite and then return to normal. The returned signal varies depending on the type of tissue. Additional magnets in the MRI guide the radio signal through the body, allowing the MRI to build a detailed 3D image of tissues. It's a bloody miracle that it works at all.
The MRI scan was painless, except for the tracer injection, but the machine was extremely loud. Thankfully I'm not claustrophobic.
More bullet-sweating ensued as I waited for Dr. Dinome to call with the results. To complicate matters, I came down with a minor bug that was going around the office, so I felt like crap and was certain that it was all related to the cancer. The mind plays really mean games when you suspect you have a serious illness.
Thankfully, the results came through quickly, and nothing unusual was detected in my brain.
PET scanners are another marvel of modern medical science. The name is an acronym for Positron Emission Tomography. The theory is fairly simple: metabolically active areas of the body absorb more nutrients than other parts of the body, and cancer tends to be extremely metabolically active. By injecting a radioactive glucose tracer into the bloodstream, we can make tumors emit more radiation than the rest of the body. A PET scanner is nothing but a ring of radiation detectors and some computer software for building 3D images from the data.
The technician brought out the radioactive tracer injection in an intimidating metal cylinder. Apparently this stuff is rather hard to come by; it actually has to be produced by a particle accelerator. After the injection I had to wait an hour for the tracer to circulate. In the meanwhile I read several chapters of Joel On Software and listened to more bad Muzak than one should ever be subjected to.
The scan itself was more pleasant than the MRI. The machine was a Siemens Biograph with a fused CT scanner and PET unit. It was fairly quiet except for the gentle rumbling of the CT scanner's rotating x-ray unit. The setup looked very expensive.
And then another wait.
The PET scan was on a Wednesday, and I expected the results the next day. Dr. Dinome promised to call me as soon as they were available. I got absolutely zero work done and once again spent most of my day pacing around the park next to the office. Around 5pm I finally called Dr. Dinome's office to check on the results, but they had not come in yet. Dr. Dinome again said she'd call as soon as they were available.
The next morning I was too nervous to even think of going to work. I took a long walk, cell phone in hand. After about an hour I wandered back home, expecting to take a shower and probably try to go back to bed for a while.
My parents were waiting in the front yard. Wow, that was unexpected. (As a point of reference, they live in Dallas, Texas. I live in Los Angeles, California.)
What the hell? They'd mentioned they wanted to be around for the additional surgery I was expecting the next week, I wasn't expecting them until at least Sunday.
Apparently Dr. Dinome had spoken with my mother the night before, and asked if she wanted to tell me the results of the PET scan in person.
Needless to say, they were not what we had hoped for. The melanoma had spread to my liver. This is bad.
I know Dr. Dinome meant well by this, but I was more than a little peeved that she didn't call me directly and immediately when she received word from the radiologist. I'll have to make my expectations clear next time. Technically this was not a breach of medical privacy, since I had previously given Dr. Dinome permission to discuss the situation with my parents on the phone. The fact of the matter is that I was more or less expecting bad news and was ready to deal with it. At least as ready as one ever can be for that sort of thing, I suppose.
Here is the PET scan. Note the cancerous lymph node in my left shoulder and the spots in my liver.
Two things are certain at this point: I have a case of metastatic melanoma, and it will kill me if I don't take drastic measures. I don't know how long I'd last if I left the melanoma completely unchecked, but my best guess would be less than a year. This is a serious problem, and it's not going to go away on its own.
Life changes so damn quickly. Just a month ago I was wondering whether I'd beat my target time in the Long Beach Marathon, not pondering whether I'd be able to recover from a usually-fatal form of cancer. (For what it's worth, I did beat my target time.)
Melanoma treatment has advanced considerably over the past few years. Until recently it was considered almost completely untreatable. The recovery statistics are still abysmal, but they are constantly improving. Given my overall condition and the fact that I seem to have accidentally ended up with a good team of oncologists, I think there is a very good chance that I will fully recover.
Current treatments revolve around Interleukin-2. You can read all about it at http://www.proleukin.com . The basic idea is to stimulate the immune system to attack the cancer cells. IL-2 is generally combined with standard chemotherapy drugs to form a particularly yummy cocktail called biochemotherapy.
Dr. Dinome referred me to Dr. Peter Boasberg, a medical oncologist in the Cancer Institute Medical Group. I'm not sure of the organizational structure, but somehow the chain of affiliations leads back through the John Wayne Cancer Institute and the St. Johns Hospital. My parents accompanied me to an appointment with Dr. Boasberg on Monday, November 8th.
Dr. Boasberg comes across as a stereotypical research doctor. He seems spaced out to the point that a nuclear weapon could detonate next door and he probably wouldn't notice. But in speaking with him I could sense the gears turning in his mind, and knew he was the sort who stayed on top of current research and had a deep familiarity with melanoma.
He suggested that we start with two rounds of biochemotherapy based on interleukin-2, interferon-a, and a number of other chemicals with odd names. Each round would begin with five days in the hospital and end with 16 days of recovery at home. We would also aggressively follow up with surgery if necessary. Although the success rate is still somewhat depressing, the combination of this particular form of biochemotherapy and surgery has achieved better remission rates than any other current melanoma treatment. He also mentioned that there are a number of promising treatments on the horizon, and that I might be able to participate in clinical trials if this treatment failed.
Overall, Dr. Boasberg seemed very optimistic. He said that physical condition was the number one prognostic, and that my recent marathon training would be enormously helpful. On the other hand, he commented that the fact tha the cancer is in my liver does make the situation a bit more serious.
I considered seeking a second opinion, but I decided not to on the basis of my Internet research and my desire to get started with treatment as quickly as possible. The next day I informed Dr. Boasberg's office that I would like to begin the following Monday.
HMO health plans are cheap for a reason. For what it's worth, I'm on the Blue Cross HMO through my employer (Activision). I could have selected a PPO coverage plan, but I didn't really plan on coming down with cancer.
In most cases, tests requested by specialists such as oncologists must be approved my the patient's primary care physician. This is a pain in the ass, and it is sometimes difficult to get tests performed on time. I've discovered that to make anything happen in the medical system, you need two tools: a cell phone and a cattle prod.
I've actually resorted to showing up at the insurance approval office in person to get approval forms more quickly. Blue Cross has yet to deny anything, but they sometimes take their time in issuing approvals.
I intend to switch to a PPO health plan as soon as possible. Of course my preexisting condition may make this more difficult.
I got a port implanted today, 11/17/2004. It's a small plastic thing under the skin below my collarbone, with a catheter leading to my jugular vein. Instead of inserting IV needles, they can just tap the port, only having to puncture a thin layer of skin. Apparently it's a much more pleasant option in the long run.
The surgery was performed by an interventional radiologist. He was quite a humorous character. Although I was technically awake for the whole procedure, they had me a mile high on sedatives and local anaesthetics, and I really didn't feel a thing. I actually found myself wishing the procedure wouldn't end because I was feeling so comfortable and mellow.
The nurses at St. John's Hospital are incredibly friendly and helpful.
While I was waiting to start the surgery, I played Metroid on my GBA. It's every bit as good now as it was back then. I also spent a while learning how to play Advance Wars 2. At a glance it looks to be an awesome game.
One of the most bizarre aspects of the IV port is its immediate access to my bloodstream. I can actually smell port injections within a very brief period of time. This makes some sense, because the port attaches directly to the jugular vein.
After any sort of access to the port, I have to flush the line with a saline solution and sometimes with a heparin lock solution (to prevent anything from coming back up the line).
I'll start biochemotherapy on 11/18/04, one month and three days after my initial doctor visit. This has been a really rough month, but I think I've cleared a number of major hurdles.
Biochemotherapy consists of a continuous flow of interleukin-2, a daily injection of vinblastine, a daily IV of cisplatin, a single injection of alpha interferon, and a single IV of dacarbazine. The process takes five days in the hospital, with a 16-day recovery period at home. The general side effects are basically flu-like.
I'm thinking that as long as we're going to conduct biological and chemical warfare in my bloodstream, we might as well drop a few nukes for good measure. At least it would get rid of the tumors, and I bet they wouldn't come back.
I had a CT scan. I'll post the images if I can get them. Dr. O'Day said the liver tumors looked much less impressive on the CT scan than on the PET scan, which is definitely a good thing. Sounds like they're still pretty small. He also mentioned that my blood tests indicate that my liver is still functioning very well.
(11/22/04) I'm out of the hospital and resting at home. I'm extremely tired and a little nauseous. I have an array of pills to help with the latter. Walking across the room makes me dizzy. Typing is difficult, probably due to the Cisplatin (which affects the peripheral nervous system). But I can tell that I'm slowly getting better; I should be mostly mobile in a couple of days.
The strangest part of chemotherapy is how it affects your sense of taste. For a while even water was tasting sort of like lemons.
It took several days to regain my appetite, but I'm eating fairly normally at this point, and overall I feel pretty good. I'm still getting lots of rest (in between a tough regimen of Halo 2 and Futurama episodes on DVD), but the nausea has pretty much gone away.
I'm still trying to muster up the patience to fix my server (http://www.overcode.net/), which has been down for about a month due to a boneheaded mistake involving hard drive controllers and metal objects. Note to self: do not schedule major server work for the week before you go in for chemotherapy. It's a guarantee that you'll fry something.
I've been nervously feeling the inflamed lymph node in my neck, hoping for some decrease in size that might indicate good results from the biochemotherapy. So far nothing conclusive, but that's not a cause for alarm at this point.
(11/29/04) I finally got the IV header removed from the implanted port. They can only leave needles attached to it for a week at a time due to the risk of infection, and since I have no need for the port until the next round of biochemotherapy, the home care nurse went ahead and detached the external part. Very good riddance! Having an IV line dangling from my chest at all hours was becoming more than a little annoying.
With the external attachment gone, I can get a better look at the port. It doesn't hurt at all, but it really looks like it should. It's a good sized bump under the skin a couple of inches below my right clavicle. Sort of creepy, but again, painless.
Seriously, if you ever end up needing chemotherapy or a related treatement, the implanted port is the only way to go. It has saved me no end of grief throughout this process. It does take quite a bit of getting used to, though.
(12/1/04) I saw the movie Alexander yesterday. It could have been amazing, but the production quality simply was not there. The battle scenes were difficult to watch, the sound was generally of low quality, and the plot left much to be desired, even for one that was mostly historically derived.
Yesterday I started playing Fable on the XBOX. It's very promising so far. I'm highly impressed by the visual quality, and so far the gameplay is a nice blend of mellow and engaging. A welcome change from the hard-driving action of Halo 2, which I've also been playing quite a lot recently.
I wonder if it would be possible to hook a soda fountain up to the port for a shot of intravenous Mountain Dew.
My energy is starting to come back. I just went on a long walk and didn't feel tired in the least. This is definitely a good thing; my legs were starting to become upset over their lack of use over the past few weeks.
(12/2/04) I'm supposed to go in for a blood test. Actually, I was supposed to on Wednesday. But I'm having difficulty finding the motivation. My most recent test was on Monday, when I still had the IV header attached. I don't see how my blood would possibly change much in two days, and another test would require a needle poke. I think I'm going to say no to this one; the less I see of doctor's offices right now, the better, and ultimately all of this is my decision.
Of course if I weren't feeling pretty good in general right now, or I had any reason to suspect problems with my recovery, it would be a different situation entirely.
(12/3/04) I went for a really long walk today. It was great to get out of the house for a while, but my legs hadn't really been used in a couple of weeks, and I tweaked my right leg a bit. I think I went about 10-12 miles total; the last three were a bit of a struggle. I'm not sure whether I'll be able to go to Big Bear (snowboarding) as planned this weekend, but I'll probably try anyway.
(12/4/04) I'm going flying today. Not sure where. Taking an Archer II from the Santa Monica Airport and going vaguely east for starters. Four hours of fuel should be plenty to find an interesting place to land.
(12/5/04) Once I got off the ground, the flight went well.
It seems that one of the nicer rental airplanes at the Santa Monica Airport, N253FD, was involved in a minor landing boo-boo yesterday. I'll leave it to the NTSB accident report for the details, but the landing gear partially collapsed and the wing hit the ground. Nobody was injured, and the airplane will be repaired.
This caused scheduling headaches. The plane I was supposed to fly was still in the shop and delayed by the one that crashed, so they moved me to a different one. That plane wouldn't start, so I ended up with yet a third plane.
We flew to the Agua Dulce Airpark, hoping to introduce Jenna to their excellent BBQ. Unfortunately the restaurant was closed by the time we got there, so we continued to the small town of Delano, just north of Bakersfield. Delano's airport has a nice Mexican restaurant within walking distance.
Clouds moved in over the San Fernando Valley, so I had to file IFR for the flight home. The weather was beautiful for most of the flight, but we ended up in the clouds for about five minutes. As always, it was an interesting mix of fear, control, and exhiliration. Flying through the clouds, especially at night, requires a certain type of concentration and determination that you don't often need. I know that I have the training I need to do it safely, I know that I am in full control of the airplane, and I know that my instruments are correct. But there is always a mild sense of panic in the back of my mind while I'm in the clouds. I think that's actually a good thing; IFR flying is generally safe, but could become extremely dangerous without a proper sense of respect.
Air traffic control uses published Standard Terminal Arrival Routes and Departure Patterns (STARs and DPs) to reduce radio traffic and more easily coordinate arrivals from large numbers of airplanes in busy terminal areas (such as Los Angeles). Instead of issuing a mile-long clearance involving numerous navigation stations and altitudes, they can just give the name of a published STAR, which you should have on board in your chart binder. STARs are usually named after their main fix or some nearby geographical feature. On this particular flight I was cleared for the KIMMO TWO arrival, Lake Hughes transition (LHS.KIMMO2). Oh, the irony.
I don't think they had any idea I was up for round two of chemotherapy in the next couple of days.
(12/6/04) The place I usually rent airplanes from got wind of my medical situation and said that, until treatment is over, I can only rent from them if I bring a qualified safety pilot or flight instructor along. I'm not surprised by this, and I fully understand their reasoning, but it is a bit annoying.
I wouldn't even think of flying if I had any reason to doubt my physical ability to do so safely. Nonetheless, they have liability, and they have to stay in business, so I understand. The second round of biochemo is coming up soon, so this won't be an issue for a while.
(12/7/04) Saw Polar Express today. I was very impressed by the graphics and animation.
Someone put a big dent in the corner of Jenna's laptop, to the point that the power connector wouldn't go in all the way. I took the upper case off and banged the aluminum frame back into shape with a tack hammer. Getting the machine apart was a real adventure, and the aluminum is a little scuffed up now, but it works.
I have an appointment with Dr. Boasberg tomorrow morning.
(12/8/04) As usual, I felt better after talking with Dr. Boasberg and Sandy, the nurse.
I got a copy of the report from the CT scan they took before the first round of biochemotherapy. Here are the juicy bits:
The examination was performed on a Siemens Multidetector scanner. Helical scans were obtained from the lung apices through the diaphragms during the intravenous infusion of nonionic Optiray 320.
There are scattered small pulmonary metastatic nodules. The largest is located in the right middle lobe adjacent to the minor fissure and is 4mm in diameter (image 35). There is no mediastinal or hilar lymph node enlargement. There is a left axillary lymph node that is mildly enlarged measuring 1.4x1.0 cm in diameter. There are adjacent surgical clips. There is a Port-A-Cath.
1. Scattered small pulmonary metastases with the largest measuring 4 mm in diameter.
2. Mildly enlarged left axillary lymph node.
(In other words, scattered small lung tumors. I didn't know about these until I read the report. This bothers me somewhat, but I guess it really doesn't affect my overall situation or course of treatment.)
Helical scans were obtained from the diaphragm to the iliac crests following the oral administration of dilute contrast material and during the intravenous infusion of nonionic Optiray 320.
There are a few small hepatic metastases with the largest measuring 1 cm in diameter. The spleen measures 11 cm in greatest axial dimension. No abnormality of the gallbladder, pancreas, adrenal glands, or kidneys is demonstrated. There is no abdominal or retroperitoneal lymph node enlargement.
Scattered small liver metastases.
(I already knew about the liver tumors. They are small and have not yet had any noticeable effect. By the way, I still shudder whenever I think of the taste of that CT scan contrast solution.)
Although some aspects of this report are worrisome, overall it is quite encouraging. It is nice to know that the various aches and pains I have are not related to cancer in those areas. In fact, it is unlikely that I've felt anything from the cancer so far.
I also got a copy of the brain MRI report, but it isn't interesting at all. "No evidence of pathologic enhancement, mass, or mass effect. There is no MRI evidence to suggest metastatic disease to the brain."
They sure do like blood tests. They took another one today. Sandy says they've looked good so far, which means that they won't reduce the dosages of any of the biochemotherapy drugs.
I asked Dr. Boasberg if he had any reason to believe that this condition would affect my ability to safely operate complex machinery, such as an airplane. He said no. Of course he's not an aviation medical examiner and can't legally give me a go-ahead, but this is nonetheless reassurring.
It is extremely likely that I will end up with at least four rounds of biochemotherapy. According to Sandy, the only way we wouldn't continue with rounds three and four would be if the disease actually progressed during the treatment. If it stabilizes or loses ground at all, we will keep pounding on it. The absolute maximum is six rounds due to the cumulative toxicity of the chemicals.
Tomorrow begins the second round. I should get home on Monday the 13th. Judging from last time, Tuesday and Wednesday won't be much fun, and things will start to improve by Thursday. I think I am better prepared this time around. I know what to eat and what not to bother with. I also have a secret weapon that should make the first few days more tolerable.
If the schedule holds, which it probably will, the third round will begin on December 30th and go through New Year's. Annoying, but at least I should be at home and feeling relatively decent for Christmas.
(12/9/04) Going in today to start the second round. I can show up whenever I want, more or less. IV's run just as well at night as they do during the day.
Several people have asked if they can visit while I'm in the hospital. The answer is generally yes, but call my cell phone first. If I don't answer, or pick up and scream something unintelligible about space alien commies invading, it's probably not a good idea. I'll be at St. John's hospital in Santa Monica, 1 North. Call me for the room number.
I'll be fairly drugged out and probably not too social. That doesn't mean I don't appreciate visitors, just that I'll probably look worse than I actually am.
I'm not even bothering with the laptop, Game Boy, or books this time. I know I won't get around to using them. I do plan to bring an iPod.
I've been asked whether I'm dreading this. No, I'm not. It's not as horrible as you might think. While I'm in the hospital, I can get high doses of lots of happy fun drugs (Ativan, Demerol, and Vicodin mainly). These help a lot, if only by making me very sleepy. The time flew by very quickly last time, probably because I slept through most of it. Interestingly, I don't even remember a number of conversations with various doctors.
Might as well get used to it, at any rate, because this is number two out of four or six.
No more updates until at least 12/13/04.
(12/13/04) The jury is still out on whether this round was more or less unpleasant than the first round. The first few days flew by quickly, but the last day was for some reason absolutely glacial. Oh well, it's over. Two out of four down.
I feel less dizzy this time, but a little more nauseous. Hopefully I'll be able to start eating again by tomorrow.
Hospitals are horribly understaffed, especially at night. The daily interferon shot gave me heavy chills (a fairly common side effect, treatable with Demerol). I rang my nurse call button, hoping for some warm blankets and a Demerol shot. Twenty minutes later, an assistant happened to drop by my room (he hadn't seen the call light). He retrieved some blankets, but they failed to stop the chills. Another twenty minutes later, the nurse (as far as I know, the only one on duty in the entire chemotherapy area) finally came by with a Demerol shot.
Had this been an actual emergency and not simply an uncomfortable side effect, there would have been a problem. Forty minutes is not an acceptable turnaround time. I asked the nurse about this, and she said that in an emergency I could set off an alarm by yanking on the call button box. I wonder what the response time would be in that case.
This isn't the nurse's fault at all. She was working as fast as she could, and was obviously under a lot of stress. She had an almost impossible load of patients to deal with. For the amount the hospital charges (I'll write about that later), they really need to increase their staffing.
To be totally clear, all of the nurses I've had so far have been excellent. They've been friendly, helpful, and efficient. But there are limits as to how many patients they can physically deal with at a time.
(12/14/04) The secret weapon (alright, I have to have *some* plausible deniability, but it burns and rhymes with "rot") helps considerably. It takes the edge off the nausea, makes me a little less anxious all around, and helps me doze off. It is far more effective at relieving the post-chemo symptoms than any of the prescription drugs I have. I'm still taking Ativan and Compazine.
Smoking, particularly this type, certainly isn't good for my health, but neither are any of the highly toxic chemotherapy drugs I've been taking. If anything takes me out, it won't be a few pipe hits.
And with tumors growing in my liver, an enormous lymph node in my neck, and two to four more rounds of highly unpleasant chemotherapy ahead of me, I am having a very hard time bringing myself to care about the DEA's assertion that marijuana is an evil substance with no medical value.
At the moment the nausea is mostly under control, but sometimes it returns. That'll probably continue at least through tomorrow.
Laying in bed for extended periods of time gets to be a problem. My legs are becoming rather sore, but I don't have the energy to get up and walk around. Interestingly, I feel fine until I try to get up, but then I have no energy whatsoever.
I do think I feel a little better after this round than I did after the first.
(12/15/04) Lots of laying in bed still. My stomach has settled enough to start eating. I'm taking it a little more slowly than last time (I got ambitious about this time after the first round, ate a bunch of Chinese food, and watched it all come right back up.) I actually feel pretty good, just very tired as soon as I start to do anything. Maybe I'll give the XBOX a workout tomorrow.
I'm planning to head home to Dallas on the 20th. I'll fly back here on Christmas day. (Yeah, that kind of sucks, but it was the only remotely affordable flight we could get.)
(12/16/04) My stomach was not happy this morning. I don't know why. It seems like it's taking longer to recover from this round.
However, I'm starting to get some energy back. I went around the block to Tanner's Coffee and got a bagel, then came back and played some Fable. That would have been out of the question yesterday.
Fable is a great game, but the combat system could do with a lot less button mashing. My hand starts to get sore in some parts.
(12/17/04) I got a payment statement from my insurance (Blue Cross) yesterday. Apparently a round of chemotherapy goes for $40,000. Absolutely crazy. Thankfully, insurance is covering everything. My situation would be much different if I didn't have health coverage.
I'm trying to figure out how to beat Jack of Blades in Fable.
(12/18/04) I beat Jack of Blades. Die, die, die, you annoying rat!
He really wasn't all that hard once I learned how to fight him.
So I've finished Fable. I played as a good character the whole way. I may replay it from the start with an evil character, but I'm taking a break for some Halo 2 now.
My stomach still isn't happy. This is getting absurd. I got up at about 8:30am and walked to Subway so I could get some food and avoid puking.
I'm waiting for Monday to roll around so I can get rid of this IV port attachment. Having an IV header dangling from my chest is once again becoming annoying.
Scratch that. I'm waiting for March to roll around so this will all (hopefully) be over. I'm going to demand to keep the IV port when I have it removed. I'll then douse it in lighter fluid, set it on fire, and toss what's left out the window of an airplane as I fly low over the Pacific.
Speaking of violent catharsis, I think it's time for a trip to the gun range. I want to rent something big. I don't think they carry Stinger missiles, but that would be about the right caliber.
Once the cancer goes into complete remission, I plan to celebrate by purchasing an H&K USP9 handgun. I think I'd also like a rifle of some sort; an M1 Garand (standard issue WWII rifle) would be wonderful, but I think that might be hard to come by.
(12/19/04) I'm getting the IV port attachment removed tomorrow, which thrills me to no end. And I'm flying back to Dallas, TX for a few days.
It is time for this upset stomach to leave. Out, out, out!
I'm going to stop reading websites on melanoma treatment. It's too depressing. Yes, I know cancer treatment in general and melanoma treatment in particular is a total crapshoot, but it gets really discouraging when sites talk about "prolonging life" as opposed to "completely eliminating tumors".
Complete remission is the ONLY acceptable option, and it WILL happen. Or I'll die trying. Literally.
Two of the chemotherapy drugs I'm getting are Cisplatin and Vinblastine. There's a wealth of information out there on both of them, but the bottom line is that we don't know why either of them actually work, just that they seem to affect tumors in some cases. Cisplatin's basic function is to stop cell division, but we're not sure why it does that.
Modern medical technology is amazing, and we have some incredibly sharp scientists working on cancer treatments, but it's far from a cured disease. I am incredibly lucky to have even a chance of overcoming this.
By the way, if anyone out there is closely familiar with the mechanics of CT scanning, I'm curious about the timing of the contrast injection. Why is it done during the scan, and not before? How does that work at all? See below for my email address.
(12/21/04) At home in Dallas, TX for a few days. The flight went well, but we sat on the tarmac for at least 20 minutes waiting for the previous plane to leave our gate. DFW Airport was a total zoo; I'm amazed by the volume of traffic they handle.
The incision on my back from having the original mole removed is finally healing. It had opened back up a couple of weeks after the surgery, revealing a very deep cut with some visible muscle. I used lots of antibiotic ointment on it to keep it from getting infected and kept a bandage on it to keep it from oozing on everything. I intended to talk with the surgeon after chemotherapy was over (I don't have the bandwidth or energy to deal with both at the same time), but over the past few days it's taken a turn for the better. It's now dry and flat, nothing is exposed, and it appears to be healing fairly normally. It doesn't hurt and doesn't limit my range of motion, so I'll probably just leave it be.
I'm sure there will be a scar for a very long time.
So, all the places that bug me: the inflamed lymph node in my neck, the above-mentioned crater in my back, the incision in my left armpit from the lymph node biopsy, the place where the IV port reaches my jugular vein (the tube is visible under the skin), the blob that is the IV port, and the incision from where it was inserted.
A few more incisions and I'll look like a Reaver from Firefly.
I have scans on the 28th. These will provide our first indication of whether chemotherapy is working. I'm more than a little nervous about them.
Given that I have a PET, MRI, and CT scan on the same day, I'll probably be glowing with radioactive tracer for a while. That could be interesting.
As usual, I'll try to obtain the radiology reports and post them here. Hopefully I can snag another full color PET scan image.
Scans are painless, except for the tracer injections and the really bad taste of the CT scan contrast. Nonetheless it'll be a really long day.
I bet my insurance company hates this particular treatment program. That's easily $7000 of scans in one go.
(12/22/04) It's snowing in Dallas!
All the more reason to have breakfast in bed until noon.
My Wacom tablet (a cheap but effective 4x6) works well on my mother's Mac laptop. I'm actually starting to like it better than the normal touchpad. It's kind of awkward to hold a laptop and a digitizer tablet at the same time though.
I did a bunch of online Christmas shopping today. I doubt any of the stuff will arrive by Christmas, but that's fine. I still need to do some actual brick-and-mortar shopping. If the roads aren't icy, I'll do that tomorrow.
I've been wondering whether the Cisplatin or the interferon shots are mainly responsible for the chemotherapy side effects I've been experiencing. Regardless, I'm going to insist on some better anti-nausea medication before the next round. Failing anything else, I'll just obtain a massive amount of weed, but I'll at least try to use the official channels first. Ativan and Compazine are useless to me; they really don't have any noticeable effect at all, other than making me drowsy in the large doses I receive at the hospital. The pills they gave me for home just don't work. I know more powerful stuff is available; I'd just rather get it legally.
I'd be equally happy with a powerful sedative. It would be great if I could just sleep straight through the first two or three days at home. That's effectively what I end up doing anyway, since I have zero energy, so why not avoid the nausea?
I'm going to tell the nurses to treat me as though I were allergic to Benadryl. Normally they inject a fairly high dose just before starting the chemo IV, in hopes of preempting the itching some people experience. Although I don't think I'm actually allergic, the Benadryl injection causes one of the worst feelings I've ever experienced; I become tense, sweaty, paranoid, and depressed. It gives me a strong urge to remove the IV lines, jump out of bed, and run out of the hospital. The feeling lasts about 15 minutes, then goes away about as suddenly as it comes on. So no more Benadryl; I'll deal with the itching if that happens.
Chinese medicine considers the liver the center of the body. It's really quite an amazing organ. I have more hope for my situation after reading about its regenerative abilities. It can grow back even after significant portions have been surgically removed. If the chemotherapy removes the smaller tumors but leaves a couple of spots, we may have to operate on my liver. Although this is still a scary prospect, it is fortunate that the liver is one of the few organs that can grow back.
A good friend's father died yesterday. May he rest in peace.
(12/24/04) I watched the extended version of Return of the King last night. It was long.
Flying back to California tomorrow. Bright and early. Woo.
Got some good BBQ today, and had an excellent Christmas dinner at home.
It's hard to tell what the lymph node in my neck is doing. It's certainly not growing, which is good. I really want to think it's getting smaller, but I can't prove it. The scans in a few days will be very interesting. The tension mounts.
I still really wish they'd just remove the lymph node, but I understand the need to keep it around as a visible marker of the biochemo's progress.
It occurred to me that Dr. Boasberg and Sandy really need to be on my Christmas list, seeing as they're trying to save my life and all. I'm trying to come up with a suitable gift for when I see them on the 29th. I'll probably end up getting a cake or pie for their office.
It also occurred to me that I will have been off work for at least four or five months when this is finally over. Going back is going to be strange. I'm very much looking forward to it though.
(Christmas) Merry Christmas!
I had misread a statistic on the informed consent form I had to sign before I started this type of biochemotherapy. I thought it said the overall recovery rate was 10%, but it was actually 40-50%. That's certainly encouraging. And again, I think I have several factors in my favor, such as age and the relatively small size of the tumors.
I cleaned up my room a bit today, and came across lots of get well cards people have sent over the past few months. They give me a little lift every time I see them. Thanks, everyone.
One card had a quote about aviation that I really like: "Once you have tasted flight, you will forever walk the earth with your eyes turned skyward, for there you have been, and there you will always long to return." --Leonardi da Vinci
This is very true. I can never really get my mind off flying for any extended period of time. Nor do I try.
I also came across lots of absolutely useless literature about cancer. I guess the hospital gave my parents a big stack of it, and it's been hiding under a pile of books in my room ever since. Into the trash it went. "You'll receive chemotherapy through an IV. There are several types of IV. If the IV makes you uncomfortable, talk to your doctor..."
Let me offer my condensed summary of cancer. Maybe they could print it on a little card and distribute it in lieu of the sappy brochures:
Congratulations, you have cancer! Your life is about to turn upside down. It causes a lot of stress, and many patients crash and burn horribly. Chemotherapy can save your life, but in the process it'll make you feel like you've been run over by a Hummer. Alternately, your doctors may choose to irradiate you in one of several ways, which is not altogether unlike being shoved into a microwave oven on "high" for a few minutes. Your medications probably won't make you feel better, so do yourself a favor and buy some weed. Get used to needles; you're going to be poked with a lot of them. Be strong, and you might live. Good luck!
You see, that would have actually been a *useful* description when I was first getting started.
(12/26/04) Both of my roommates have dogs. One is a golden retriever + chow mix named Daisy. The other is a labrador mix named Buffy. They are polar opposites.
Daisy is smart, well behaved, and mellow. She often begs for food, and usually gets it because she isn't annoying about it.
Buffy has two settings: "On" and "Off". She is a springloaded dog. I suspect she has a brain, but I haven't been able to conclusively prove it yet. When I let her into my room while I'm eating, she intently watches my every move, licking her lips, wagging her tail at nearly 60 Hz, and usually trampling whatever is on the floor.
Thankfully Daisy is the dominant dog and keeps Buffy in check most of the time.
Buffy is staring me down at the moment, as I munch on raw spinach and pistachios. In search of high-fat foods, I bought a huge jar of pistachios at Trader Joe's. Normally they would be horribly unhealthy (almost 50% fat, and I bet the rest is salt), but I need to gain back what I lost from chemotherapy. Fat and salt are actually very good for me right now.
(12/27/04) Supposed to go in for a blood test today. Debating whether to.
They're just going to take another one when I see the oncologist on the 29th, and another when I go to the hospital on the 30th.
Believe it or not, getting poked with needles actually isn't one of my hobbies.
Of course I wouldn't complain in the slightest if this actually had something to do with reducing the size of the tumors, but it really doesn't.
Tomorrow I go in for scans (PET, MRI, CT), and the following day I meet with Dr. Boasberg. On the 30th I start Round Three. Perhaps we'll have some interesting results by then. In the interest of not riding an emotional rollercoaster, I'm assuming the biochemotherapy isn't doing jack, so any improvement will be a pleasant surprise.
. . .
So I did end up going in for the blood test. It was an excuse to walk across the city (probably about 10-12 miles). Thankfully I didn't tweak my leg this time; I've been more active than I was after the first round, so the long walk wasn't quite as much of a shock.
It started raining just before I got to the lab. Walking in the rain was actually kind of fun.
I'm back to playing Halo 2. I'm enjoying it much more than I usually enjoy first person shooters, especially on consoles. The AI is great; it's lots of fun to throw grenades at enemies and watch them leap for cover. You can take advantage of that behavior, of course. The variety of weapons and the uniqueness of each is also nice. If you get tired of traditional guns and rockets, you can salvage a wide selection of alien weapons. You can also wield two weapons at a time, though this prevents you from throwing grenades.
I really like the dual plot aspect of the game. The gameplay alternates between two characters, the Master Chief and the Arbiter, on separate sides of a conflict. Cutscenes fill in the story progression on both sides.
Halo 2 was a very large budget game and should be held to very high standards for the resources the development team had at its disposal. I for one am not disappointed at all.
. . .
Apparently I had several phone conversations and a two hour visit from Jenna while I was in the hospital for Round Two. I only vaguely remember seeing Jenna there, and I remember picking up the phone once, but I have no idea who it was. Totally weird.
Interferon-A is known to cause amnesia.
(12/28/04) I had a PET scan and a CT scan today. I haven't received any results yet.
The grape-flavored barium contrast atrocity they gave me was hands down the most revolting drink I have ever tasted in my life. The warm, smooth, chalky consistency and the mild grape flavor nearly made me vomit with every sip. I downed half the bottle before surrendering; I couldn't take any more. I informed the receptionist that if I had any more, it would definitely end up on the floor. She phoned a doctor and got a go-ahead to do the scan.
A different contrast solution is available, and they've made a note in my file to give me that next time.
My MRI was cancelled. I don't know why, but I'm sure as hell not complaining. Sandy said not to worry about it, and that I'd have an MRI after Round Four.
Wow. I just saw thunder and lightning. That *never* happens in Los Angeles. This is strange weather indeed.
Meeting with Dr. Boasberg tomorrow. We'll probably talk about the results from the scans. I plan to bring up a couple of minor issues I had with the last round of biochemo and strongly request some better anti-nausea drugs.
I found out that Ativan isn't even an anti-nausea drug primarily. It is commonly used to control nausea in chemotherapy patients, but it is mainly used as an anti-anxiety drug. It usually just makes me drowsy and has no noticeable effect on the nausea. Compazine is often used to control severe nausea and vomiting, but it is also used to treat psychotic disorders. Hey, if I'm going to go insane during this whole mess, at least I have the right drugs for it.
During the first week of recovery, I get a Zofram IV every morning. This does help considerably with the nausea, and I plan to ask about getting it in pill form.
I'd also accept Marinol, of course, but doctors seem to be reluctant to prescribe that.
But really, I just want a really big sleeping pill. Let me sleep through the chemo and the first three days of recovery, and I'll be fine.
The PET and CT scans produced a confusing picture.
The liver has improved considerably. The main lesion, visible on the PET scan from over a month ago, measured 1cm last time and is now 7-8mm. It is also considerably dimmer on the PET scan. The smaller lesions are no longer visible. This is very good news, and seems to indicate that the treatment is working.
However, we're not sure what's going on with my lungs. The unidentified nodules are still there, and have increased in size and number. We don't know whether these are cancerous. They are much smaller than the liver tumors, and as such we would expect the biochemotherapy to have eliminated them by now.
None of the lung nodules (I'm avoiding the word "tumors", since that would necessarily mean they were cancerous) have shown up on the PET scan. They may simply be too small to appear at this point. Or they may not be cancerous at all.
The nodules in my lungs may or may not be melanoma. They are certainly a cause for concern, but according to Dr. Boasberg, they are much less of an immediate threat than the liver tumors.
Here are the CT scan reports:
CT SCAN OF NECK WITH INTRAVENOUS CONTRAST - 12/28/04
The patient was scanned on a Siemens Volume Zoom Multidetector CT. Axial scans were performed with a 3mm collimation from above the skull base to the suprasternal notch. Scans were performed during intravenous bolus infusion of 100 cc of nonionic Optiray 320.
A 2.0 cm retention cyst is seen within the right maxillary sinus, somewhat larger than on prior exam when it measured 1.4 cm. A right subclavian central venous catheter is again seen. There is a single enlarged left supraclavicular lymph node, which measures approximately 1.4 x 1.7 cm in diameter and had measured 1.4 x 1.8 cm. No other enlarged cervical lymph nodes are identified. The parotid and submandibular glands appear normal. Retropharyngeal soft tissues, parapharyngeal fat tissue planes, tongue, hypopharynx, and larynx are normal in appearance. Thyroid gland appears normal. There is an equivocal area of mild enhancement versus beam hardening artifact seen on scans 32-33. This 1.6 cm diameter area of minimal increased density is seen lateral and adjacent to the lateral aspect of the right C4 lamina without bony erosion.
1. 1.4 x 1.7 cm enlarged left supraclavicular lymph node, unchanged since 11/18/04.
2. Equivocal area of enhancement in muscles adjacent to the lateral aspect of the right C4 lamina (scans 32-33). This may represent a beam hardening artifact; however, enhancing intramuscular lesion cannot be entirely excluded, and if clinically indicated, recommend correlation with PET scan and/or MRI scan of the neck.
3. 2.0 cm retention cyst right maxillary sinus.
CT SCAN OF CHEST WITH INTRAVENOUS CONTRAST, 12/28/04
Using the Siemens Volume Zoom Multidetector helical CT scanner, a spiral CT scan of the thorax was performed. The patient was scanned in the supine position, scanning from superior to inferior, from the thoracic inlet through the level of the adrenal glands, employing single breath-hold technique during the uncomplicated bolus administration of intravenous contrast. Scans were reviewed with contiguous 5 mm slice thickness reconstruction.
1. Right chest Port-A-Cath remains in place with catheter tip extending to the right atrium. There is no evidence of pneumothorax.
2. There are approximately 20-25 small pulmonary parenchymal nodules. These are noncalcified and noncavitary. All are thought to be metastases. Since comparison study, nodules are predominantly increased in size. There may be a few tiny new nodules. Largest nodule in the right perihilar region measures 5-6 mm on current examination, image #4, and previously measured 4 mm. All the remaining nodules are between 2 and 5 mm in size.
3. A previously noted left axillary lymph node is again seen measuring 16 x 11 mm. This is slightly increased compared to prior study where it measured 14 x 10 mm. This is measured on current examination, image #12. No additional left or right axillary lymph nodes are present.
4. There is no pathologically enlarged mediastinal, hilar, or internal mammary chain lymphadenopathy.
5. Heart size remains within normal limits. There is no congestive heart failure, pericardial effusion, or pleural effusion.
6. The thyroid gland is normal in size, shape, and contour.
7. Details concerning the abdomen and pelvis will be discussed in separate report CT scan abdomen and pelvis.
8. Evaluation of the skeletal structures of the thorax demonstrates no clear aggressive skeletal lesion.
CAT scan of the chest again demonstrates numerous small pulmonary nodules. These range in size from 2-6 mm with slight interval increase in size of the majority of these nodules. Total number is approximately 20-25, and all are thought to be metastases that are growing. In addition, there is a mildly enlarged left axillary lymph node that has also increased in size. No additional new lesions are seen. Right chest Port-A-Cath and left axillary surgical clips remain in place.
CT SCAN OF ABDOMEN AND PELVIS WITH ORAL AND INTRAVENOUS CONTRAST, 12/28/04
Using a Siemens Volume Zoom Multidetector helical CT scanner, a spiral CT scan of the abdomen and pelvis was performed. The patient was scanned in the supine position, scanning from superior to inferior from the dome of the diaphragm to the ischial tuberosities. Scans were acquired after the administration of oral contrast and during the uncomplicated bolus administration of intravenous contrast. Note is made that an approximately five-minute scan delay was employed between scans through the lower abdomen and pelvis in order to allow for opacification of the urinary bladder. Scans were reviewed with contiguous 5 mm slice thickness reconstruction. Separate CT scan of the chest was performed and is dictated as separate report.
1. A 7-8 mm hypoattenuating liver lesion is seen on image #13 within the right lobe. This was faintly identifiable on prior examination, image #10 and #11. Overall size is, however, unchanged. Additional smaller left lobe lesions were seen on prior examination and are not presently identifiable. In fact, only this single lesion is currently seen.
2. There is no new pathologic soft tissue mass or signficant lymphadenopathy.
3. There is no pneumoperitoneum, free fluid, discrete fluid collection, focal inflammatory change, or abscess.
4. The spleen, pancreas, contracted gallbladder, biliary tree, adrenal glands, kidneys, ureters, urinary bladder, prostate gland, and visualized bowel are unchanged and unremarkable.
5. Evaluation of the skeletal structures demonstrates no aggressive skeletal lesion.
CAT scan of the abdomen and pelvis performed as followup demonstrates only one residual liver lesion. This is seen as a 7-8 mm focus on image #13 at the high anterior segment right lobe. This was faintly identifiable on prior examination due to difference in attenuation; however, size is unchanged. Multiple other hypoattenuating foci seen on prior examination are no longer identifiable, and there is no clear new liver lesion.
No new suspicious visceral organ lesion, mass, adenopathy, or ascites is present.
Certainly not a complete remission (yet), and definitely some cause for concern, but overall I think this is encouraging. Biochemotherapy is working, albeit slowly. The news could have been so much worse.
I'm going in for Round Three tomorrow. This time I'll have a reduced dose of Vinblastine due to my blood test results.
While I'm in the hospital, I'll receive a fairly high daily dose of Marinol, which should induce considerable drowsiness and reduce nausea. (Marinol is synthetic delta-9-tetrahydrocannibinol, the active chemical in marijuana.) Dr. Boasberg said to continue smoking marijuana at home if I find its effects helpful.
It is becoming clear that this is not going to be a quick cure, but assuming we resolve the lung issues, I do believe I'll eventually recover. At this point I suspect that I'll end up with the full six rounds of biochemotherapy, and possibly surgery before it's all over.
(12/30/04) I'm going in for the third round whenever I can drag myself out of bed.
As before, visitors are welcome, but I'm likely to be rather out of it the whole time, more so than last time (since I'll be getting Marinol). If you want to visit, come to St. John's, 1 North, and ask for my room number. It wouldn't be a bad idea to call my cell phone first.
I'll return home on Monday the 3rd.
Happy new year!
(1/3/05) Back home. For some reason I felt less drugged out overall during this round, which unfortunately made the time pass rather slowly. I spent a lot of time staring at the clock waiting for the last day so I could go home. Marinol was useful for falling asleep; I'm not sure it did much for my nausea. It's often better to just let nausea work its course; drugs can suppress it, somewhat, but it's easier to just vomit and get it out of your system. I spent a good part of my last day in the hospital doing that.
(1/4/05) I'm very shaky on my feet, have some trouble typing, and feel slightly nauseous at times, but otherwise I think I made it out of this round better than the previous two. I don't know why; they did reduce my dosage of Vinblastine and eliminate the Benadryl, but I don't think either of those were primarily responsible for the lousy side effects.
(1/5/05) I definitely made it out of this round better than the previous. I suspect that I was actually having a reaction to Benadryl, which we eliminated this time around. I feel much less nauseous and more energetic.
(1/6/05) Woohoo! My California license plates came in the mail finally. I paid the nominal special interest plate fee and got my amateur radio callsign on them (AE6NK). They look good, though other than the callsign, they make no reference to radio.
Speaking of which, I kind of miss amateur radio. I charged up my good 'ol Yaesu FT-817 and tracked down all the cables and antenna mounts a while back. I really should get back on the air.
(1/7/05) I'm feeling dark right now, so let me share a fun statistic and a rant.
One out of seven people will die of cancer.
Only heart disease is more likely.
Overall, seven out of seven people will die of something, eventually.
Thankfully, flesh eating bacteria are rare. But buses are not. Most of us occasionally cross the street without looking very carefully. Sometimes we forget to wear sunscreen. I fly small airplanes for fun; other people prefer to bike in the mountains or scuba dive in tropical waters. We take all sorts of other risks, both intentional and not. By definition, risks sometimes fail, and it's hard to know when they will.
We're all mortal. And yet a lot of us live like we're immortal. Days come and go, and we assume they'll keep on coming. There is no sense of urgency. We treat time like water; so cheap that we can pour it on the ground. Most of us have a vague sense that we'll eventually die, but it's not something we tend to think about often. We assume that we're entitled to our 75 years, which invariably seems like it's a long way off, so we forget about it and go back to our day to day routine.
Just as your life began suddenly, without your knowledge or consent, it will end. Hopefully not for a while, but don't count on it. You could die tomorrow. Yes, you. I hope you won't.
My battle against cancer is going reasonably well, all things considered. There's a good chance I'll "win", which will buy me some more time. Hopefully a good 50 more years of it. But when this is all over, you'll never, ever catch me living as though I'm going to last forever.
Alright, enough preaching for now. I just wanted to point that out.
(1/9/05) I've been playing Burnout 3 today. The point of the game is to drive badly. You get bonuses for driving on the wrong side of the road, narrowly avoiding other cars, running your competitors off the road, and so forth. A nice aggression outlet.
I think it's time for another trip to the gun range soon. I want to test out the H&K USP9 and the Glock 17 side by side.
The home health care nurse is afraid of dogs. That's got to make her job a little more complicated. Of course it doesn't help that Daisy is a very large-looking chow mix.
I decided not to take the Zofram IV yesterday or today. I'm starting to feel quite a bit better. My stomach is still a little wobbly, but it's mostly tolerable. I was able to get out of the house quite a bit yesterday.
Jenna and Heather brought me along to see Phantom of the Opera yesterday. It was well done, but I tend to find musicals a little dry. The instrumental part of the music was great, though. After the movie we went to the Elephant Bar, where I had a very much needed margarita.
I get the IV port attachment out tomorrow. Woohoo.
(1/10/05) IV port needle is gone. I'm very glad to be rid of it.
I'm in the process of setting up disability coverage with Activision. So far they've just kept me on payroll, but this is taking long enough that they want me to switch over to disability. This will pay 90% of my salary for as long as it takes.
Not a big deal, just a paperwork hassle.
. . .
I stopped by Kung Fu tonight. It's been months. I took classes for almost a year before I stopped to let the surgery on my back heal. When I eventually start taking classes again, it's going to be a very long road to get back to where I was.
I've lost almost all of my stretching ability and a huge amount of overall muscle strength. Physical conditioning is something you don't realize you have until you lose it. I didn't realize how far I'd come since I started taking Kung Fu last November.
I asked Michael (the sifu) if he knew of any qigong exercises for stimulating the liver. He didn't know any off the top of his head, but he loaned me a whole stack of books on qigong. I've been wanting to learn more about qigong for a while, and now is an ideal time since I have an immediate need for its healing properties.
Qigong is the Chinese system of energy manipulation. Its immediate application is a set of simple, repetitive exercises. Each exercise is supposed to stimulate the body's energy in a certain way. The exercises are very simple to learn but difficult to master.
The Eastern view of the body is quite different from the Western view. Some of its tenets may seem far-fetched or even hokey to us Westerners. However, there is definitely some substance to it. Acupuncture and acupressure are starting to gain recognition as valid medical treatments for a wide variety of conditions, even though nobody can explain, in Western scientific terms, exactly why they work. The Chinese offer a detailed explanation and model of the body based on energy (chi) meridians. Qigong does not yet have as much name recognition as acupuncture, but it is based on the same system of chi manipulation, and I've yet to meet any practitioner of qigong who didn't experience at least some benefit from it. Presently, I intend to use it to stimulate my liver and re-balance the rest of my body.
Most of the restaurants within walking distance of my house serve nothing but greasy food. I tend to have even more of a craving than usual for greasy food after chemotherapy, but I've had way too much recently. So last night I had sushi and sashimi.
I'm a bit of a sushi snob. I think it's one of the finest points in human culinary evolution, and I try not to do anything that could spoil the experience. In particular, I won't eat sushi unless I'm feeling well, and I definitely won't touch it if my sense of taste is still affected from chemo.
I felt much better after dinner. I think I'm going to steer clear of greasy food in general for a while.
(1/12/05) Stopped by Treyarch today. It was good to see everyone. 3000 unread messages in my inbox. I'll be sure to get right on those...
I saw a recent build of the game project, and it's looking GOOD. It's come a long way since I left last November.
Yesterday I had an urge to build a new gaming PC, so I headed for Fry's with a Christmas gift certificate in hand. I got an Athlon 64 3000+, 512 MB RAM, a SATA disk, and a Geforce 6600 video card. The heatsink on the Athlon is absurdly disproportionate to everything else. It should be a kickass system once I get everything up and running.
Fry's is a very unpleasant shopping experience. The store is crowded, products are very difficult to find, and help is almost unobtainable.
By the time I left the store, I was about ready to punch something. "Exhale anger, inhale kindness... exhale anger, inhale kindness..."
Several of us had a chat online about the people who stop you at the door to check your receipt versus the contents of your cart. A lot of larger stores do that. As far as we can tell, they have no power whatsoever to actually stop you. You can just refuse to let them look, and unless they know for a fact you've stolen something, there's not a damn thing they can do. If they were to so much as touch you, you could almost certainly sue them and win.
I never give them any trouble, but sometimes it is tempting.
. . .
The lymph node (supraclavicular) in my neck has not shrunk, and I suspect the one under my arm (axial) hasn't either. I am getting impatient. I really want it out of there. There is no pressing medical reason to remove it, so I imagine I'll just have to wait, but that is of little comfort.
I had a fairly bad stomach ache last night, and it got worse after a while in bed. Maybe just something I ate, or the stress of walking around Fry's for an hour. I was a little worried about it, but it went away overnight. I feel fine today.
. . .
I need a software project. I have plenty of time to write something, but I don't have any real inspiration at the moment. I'd like to use an alternative programming language such as Scheme, but that tends to limit the domain of possible projects to things that don't involve a lot of low-level system interaction, which generally I enjoy.
I've always wanted to develop a complete TCP/IP stack. I implemented IP and ICMP a while back (in Tcl, just to show that it could be done), but I never bothered with TCP. I don't know of any Scheme implementation with sufficient IO capabilities to handle a network stack, which is a shame, because I think the language would otherwise lend itself well to many of the problems that arise in implementing TCP. I haven't given up on the idea, though. I could always write an extension DLL and add the necessary IO functions.
Performance, obviously, is not a concern. This would never end up in any serious application. It would just be a hack, which is an end in itself.
Oh well, there's still time. For now, I have a new PC to build and plenty of games screaming to be played.
. . .
I've been listening to the Trans-Siberian Orchestra recently. It's complex orchestral Christmas music with a metal edge to it. Very nice.
(1/14/05) This is absolutely crazy:
And this is interesting:
They have annotations of the Koran and the Book of Mormon also.
The annotations definitely have a very skeptical slant, and some of the observations are highly debatable (What? Someone misunderstanding the Bible? Impossible!), but they are still interesting.
. . .
It's alive... alive!
The new PC booted on the first try, and most importantly, it did not immediately catch on fire. The SATA disk was detected correctly, and Windows XP setup came up with no problems.
Yes, this is going to be a Windows XP box. I'll always be a Linux fan, but I have another system for that. This system is for games, and unfortunately Windows is the only real option for that.
The old CD-ROM drive I'd earmarked for this project is having trouble opening and closing. Perhaps time for another trip to Fry's. I'd kind of like to get a nice DVD burner anyway.
(1/15/04) The computer is up and running. Microsoft Flight Simulator has gotten much better over the years. I just buzzed the LAX control tower in a DC-3. The Catalina Island scenery looks very good. Radio navigation works as expected. I'll be able to use this to refine my instrument flying procedures.
I just ordered another flight simulator called X-Plane. I've never actually used it, but it has a large following, and should be worthwhile.
. . .
Do not act as if you were going to live ten thousand years. Death hangs over you. While you live, while it is in your power, be good.
(1/16/05) My friend Strick visited for the weekend. We flew to Catalina Island today. Exactly the type of adrenaline rush I've been needing.
Since I can't rent from Justice right now, we went to the Whiteman airport, which is about a 30 minute drive. I've had a rental checkout there for a long time, but I rarely go there due to the drive. (I should use Whiteman more often, though; the rental rates are significantly cheaper.)
Note that my doctor said my current condition would in no way affect my ability to operate heavy machinery, specifically airplanes. If I had any reason to doubt my ability to fly safely, I would stay on the ground.
Catalina's runway is challenging to deal with even when I've been practicing a lot, so I decided to make a practice landing at Santa Monica first. I'm very glad I did. I was still technically "current" by the FAA's definition, but I haven't flown for a while, and it showed. My landing was safe but a little harder than I'd like.
The trip to Catalina was smooth, and my landing was better than the practice landing at Santa Monica. Catalina's runway has a slight upward slant, which results in very hard touchdowns if you don't compensate. I left in a little power and went easy on the flaps as we glided in. I extended my landing flare as far as possible. It turned out well.
We got to the restaurant about 30 seconds after they closed the grill for the day. That was unfortunate, because they have really good buffalo burgers. (Buffalo roam freely on the island, and they have to thin the herd every year anyway.)
The island was lush and green from the recent rain. It was really beautiful. I wish we could have spent more time there, but the airport closes early during the winter months, and getting stranded would be a real annoyance.
The flight home went very well. I gave the controls to Strick for most of the flight. He did an excellent job of maintaining altitude and tracking a VOR radial to Santa Monica. He flew the plane all the way from the middle of the channel to Santa Monica, including the class B airspace over LAX (via the special flight rules corridor). I kept a close eye on everything, but I didn't have to make any major corrections.
Whiteman gave us a slam dunk approach. I was grateful for the plane's 40 degrees of flaps. It dropped like a rock when I put in the flaps, and we had no trouble getting down in time to make the runway.
(12/18/05) Aha! I have found a culprit.
It wasn't just Benadryl that was causing the really bad side effects on the first day of each round. I think the main offender was Reglan, an anti-nausea medication. Combined with Benadryl, its effects were really intolerable, but alone it was merely uncomfortable.
I was playing Super Mario 3 on my Gameboy Advance when I got the first Benadryl + Reglan shots. For weeks after that experience I felt sick every time I looked at the Gameboy or particularly the Mario cartridge. Associations can be really powerful.
Be it decreed: I shall have no more Reglan or Benadryl. Nausea, I can deal with; nearly suicidal depression and restlessness, absolutely not.
I want a flare gun for calling nurses next time I'm in the hospital (which would be this Thursday). Being in bed, unable to get up from extreme fatigue, experiencing uncomfortable symptoms from one thing or another, and having to wait 10-20 minutes for a nurse to get around to answering your call is an extremely unpleasant situation.
I'm going to ask about getting Zofran throughout the next round. It has been somewhat effective in controlling nausea at home, and I don't see why I don't have a constant IV of it in the hospital. Get rid of the Reglan and give me this instead. Studies have shown that it is effective for cisplatin-based treatments in particular: http://www.rxlist.com/cgi/generic/ondansetron_cp.htm
(1/19/05) I'm going in for round four tomorrow. This could possibly be the last round. I suspect I'll end up with six rounds, but it would be nice if this took care of everything.
Visitors are once again welcome. I'll be at St. John's Health Center in Santa Monica (http://www.stjohns.org), 1 North (first floor of the new building).
I'm in the process of filing for disability coverage. I found out that my health care benefits expire at the end of March, so I'll probably have to get an extension under COBRA. That will be expensive, but much less expensive than paying everything out of pocket.
(1/20/05) We had a little gathering at El Torito last night. I drank excessively and got a ride home. I just got back from picking up my car. I'm glad so many people showed up.
I should probably head in the general direction of the hospital soon. Needless to say, I'm in no hurry.
(1/25/05) I'm back. I was very nauseous at first, but a long shower helped with that. Overall I'm not doing too badly.
This round seemed a little harder to get through than the previous three. I don't know why.
The lymph node in my neck might possibly be a little smaller. If so, that's good news.
(1/26/05) Feeling mostly OK, other than being extremely tired (low hemoglobin probably). I was able to eat a bit today. I spent a while playing X-Plane, a neat flight simulator, but got tired and spent the rest of the day in bed. The bong (I need to come up with a name for it) has not been collecting dust.
The next round of scans is on the 8th. These really matter. I'm very concerned about them.
(1/29/05) Not many updates recently, because there's just not much to say. I've been at home recovering from the fourth round. I'm feeling much better now.
As usual, my hemoglobin count was really low after the chemo. This causes a very deep type of tiredness, since hemoglobin is responsible for carrying oxygen throughout the body. The only solution is to wait a few days for the hemoglobin to regenerate. I have a drug (Procrit) I can inject if it gets too low, but by the time I got the first blood results back I was well on the way to feeling normal already.
I am *bored*. Being off work for several months is very much overrated. I used to occupy my time with running, flying, and work, none of which are available to me right now. I guess I could go get another XBOX game, but that doesn't excite me much.
Every morning I wake up with a slightly upset stomach. I puke, and then it's OK for the rest of the day. I don't know what the hell is building up overnight, but it's always bright yellow. (Sorry, too much info.) In the past this has lasted until about now, so maybe it'll go away tomorrow.
The landlord says he does not intend to renew our lease as of Feb 28th. So I need to find a new place soon. This is going to be a major hassle if I have to do more rounds of chemo. I don't know how I'm going to deal with it, but I realized that I really don't care. It'll work itself out somehow. Having to move is not in my set of major life problems. Just another hassle, which must have appeared because I didn't have enough hassles to deal with.
. . .
They keep suspending the execution of serial killer Michael Ross.
Why, oh why?
I don't like the death penalty. I think it is unnecessary and prone to abuse. But if we're going to have it, we need to do it right. Once a death sentence is imposed, it should be carried out in an alley behind the courthouse within an hour. If we're not so damn sure of the conviction that we're willing to carry out the sentence immediately, without endless appeals and delays, then we have no business imposing such a serious and irreversible penalty in the first place.
(1/30/05) I get the IV port attachment removed tomorrow. I came really damn close to doing it myself yesterday, but decided not to. (They are easy and painless to remove; it would be trivial to do without help. Why I put up with this thing just for a timely blood test, I don't know.)
I went to dinner with some friends in Burbank last night. Unfortunately I was feeling like crap and in a generally hostile mood. Hopefully I wasn't too much of a pain to be around. After dinner we saw the movie Elektra, which was fairly enjoyable.
(1/31/05) I just got the IV port attachment out. The nurse had never removed one before, but it's a fairly simple thing to do, so I didn't object to being the guinea pig. There weren't any problems.
I'm finally starting to feel decent again.
(2/1/05) Stopped by Treyarch yesterday for lunch and general amusement. I ended up going to the Clippers vs Knicks game with a bunch of Treyarch people. We had the Activision luxury box. It was great.
My mother called Dr. Boasberg with a bunch of questions. He was as usual very helpful. He seems to have little doubt that we'll achieve a full remission eventually. Even if the next round of scans indicates little progress, he says, we have many options.
There are several possibilities at this point. If all detectable cancer is gone, there won't be any more rounds. If there has been progress but cancer still exists, there will be two more normal rounds which will hopefully finish it off. If there hasn't been much progress at all, there may be two more rounds, but only with interleukin-2 and interferon-a. Specifically, we would drop the cisplatin, DTIC, and vinblastine, which are responsible for most of the side effects.
Once we exhaust the usefulness of this type of chemotherapy, there are other experimental treatments (clinical trials) to try. I wish I shared Dr. Boasberg's confidence, but as always, I'm less worried after hearing what he had to say.
. . .
There is nothing, and I mean nothing, that a large plate of salmon sashimi and a Sapporo can't solve.
Jenna and I ran up a rather large sushi bill tonight and have no regrets whatsoever.
On the way back we stopped at a coop grocery store in Santa Monica and got some raw whole milk in big, heavy glass bottles. Theoretically directly from the cow, no processing. It's amazingly good compared to the usual pasteurized stuff. It contains a huge amount of fat, but that's actually a good thing for me right now.
(2/1/05) The POTUS is giving the SOTU address tonight. THC and C2H5OH will be consumed. XBOX will be played.
(2/4/05) I got a bass guitar. I've never played a string instrument before, so it's proving to be quite a challenge. I'm making some progress though. I regret not having taken up some sort of guitar years ago; this has been a lot of fun so far. Gary, one of the sound guys at Treyarch, suggested an excellent music store and helped me get started with playing. (For what it's worth, West LA Music was incredibly helpful; I highly recommend them.)
It's a Dean Playmate 4-string with an Ashdown Electric Blue 180-15 amp (15" speaker). I have to practice at a very low volume; it's loud enough to carry through the house at 1/3rd volume, and gets ridiculous any higher than that.
Heaven forbid I ever need to transport that amp anywhere.
A bunch of us are going to Knott's Berry Farm for Heather's birthday tomorrow. That should be fun.
Rome: Total War is a fun game. It combines Civilization-style turn based strategy with realtime Roman-style army battles. Very impressive all around.
. . .
I think the thing that bugs me most about this whole mess is the possibility of ending up in the hospital for an extended period of time. I'm not sure I'd be able to deal with that. If things ever turn out badly (hopefully they won't), I'm putting a high priority on staying at home as much as possible.
I just keep reminding myself that the extent of the cancer is really very small, and that it is unlikely to spread as long as we keep pounding on it. The worst possible eventualities would be metastases to either my brain or my pancreas, but of which have terribly bad prognostics. Thankfully I have no reason to think this has happened.
Every few days I get a stomach ache from hell. They last about 10 minutes and then disappear completely. I haven't drawn any correlations with particular foods or eating habits. They usually happen late at night. The pain is at about the same latitude as my stomach, but centered. It could be some sort of irritation in my small intestine. I really don't think the cancer has anything to do with it; the pain is far from any known metastases.
(2/7/05) I have to drink barium sulfate tonight for tomorrow's CT scan. Trouble is, the stuff is *nasty* (see above). So I set out to find a way to make it more tolerable.
I threw half a bottle of barium, several scoops of ice cream, a lot of grenadine (cherry syrup), and some pomgranite cherry juice in the blender. It's decent enough for a first attempt. Not a delicacy, but at least it doesn't make me want to puke. The grenadine isn't as strong as I thought it would be, but it definitely improves the chalky taste of the barium.
Unfortunately, now there's a lot more to drink. It might have been better to just use a shot glass and alternate between shots of barium and Rumple Minze. It would still taste awful, but after a few rounds at least I wouldn't care.
. . .
I've been practicing Nirvana basslines, and I can play Come As You Are, Polly, and Breed with some roughness. I still have a really long way to go, but it's a lot more fun now that I can make something resembling music as opposed to random noises.
Nirvana music in general and bass in particular is extremely simple. It seems to be a good place to start.
(2/8/05) Going in for a PET, CT, and MRI today. Let's hope for good results.
. . .
I'd happily never have another CT scan again. Between the oral and injected contrast, it is the least pleasant of the three. But unfortunately it's very important.
The PET scan technician left the IV tube in my arm so we could reuse it for the CT scan (which was in a different office). The IV had the wrong type of connector on the end for the CT office's equipment, but thankfully the CT technician was willing to try a creative approach to making it work. We were able to swap out the connector without inserting a new IV.
Despite a scheduling snafu, I got all three scans done today. Results tomorrow.
(2/10/05) The last two rounds of chemo didn't have much of an effect on the tumors, but they do appear to be stable (ie, not growing or spreading). Since chemo seems to be having a diminishing effect, I'm not going to do any more rounds. Instead, I'm moving on to the "maintenance" program, which should hopefully keep the tumors stable and possibly shrink them over time.
Maintenance is similar to chemo, but without the really evil drugs. Each round is a two night hospital stay. Most people recover very quickly (a day at most). I'll do one round a month for the first six months, and then one round every six months indefinitely (or at least until they come up with some miracle cure for melanoma).
The downside is that the tumors are still there. There is a small tumor in my liver, and there are scattered nodules in my lungs. I still have two inflamed lymph nodes. None of the tumors are large enough to pose a threat, as long as they don't grow.
The positive side is that I don't have to do any more chemo. Probably ever. Thank God. Two more rounds would have been very difficult to get through. Most importantly, I can get back to life. I can probably return to work sometime next week, and I intend to slowly get back into running and Kung Fu.
There is a very good chance that we can keep this under control indefinitely. There is a possibility of doing a radiation-based liver ablation at some point, which surprisingly is a relatively minor procedure. There is a very good chance that the lung tumors will respond to the maintenance treatment, and none of the doctors seem especially worried about that.
I could think of many preferable outcomes, but I'm generally encouraged by this news, given that it involves a normal life expectancy and no more chemo.
(2/13/05) Just got home from the first round of maintenance. Compared with chemo, it's nothing. I'm a little sick right now, but I'm sure I'll be fine by tomorrow, or even later today.
(2/14/05) Woohoo! Money, money, money!
I just got my SDI (state disability insurance) checks in the mail. Activision stopped paying me as of January 1st, and I've been coasting since then. I was a little late in sending off the paperwork, so the state's turnaround time actually wasn't bad at all.
California has a mandatory disability insurance program, funded by payroll deductions (so if you do have to use it, you're definitely entitled to it). It pays a percentage of your salary (60% I think) for up to a year if you become disabled. You just have to fill out a form and have your doctor provide an explanation. It was less of a hassle than I expected.
One caveat is that SDI doesn't deduct taxes from its checks. I'll have to remember that when I fill out my tax return; I may end up oweing additional taxes.
I plan to return to work on the 16th (this Wednesday).
(2/17/05) First day at work went well. Driving to Arizona for the Estrella War (http://www.estrellawar.org) this weekend. We have a four day weekend due to an office move.
(2/22/05) Updates will be less frequent from now on. Life is slowly starting to return to normal. Let's hope it stays that way.
I debugged spaghetti code for the first time in months today. It was great!
Thanks to everyone who's taken the time to read this blog. I appreciate all of the comments and email. The past few months have been trying, to say the least, and it was enormously helpful to know that people actually care about my situation.
(3/10/05) Life is slowly returning to normal. I moved into a new apartment last weekend, which was exhausting as usual, but at least I didn't have chemo to deal with at the same time. I'm going in for a maintenance treatment today. I'll be out on Saturday morning.
I'm bringing a laptop and some DVDs. The hospital has free wireless, so I should be able to get online. It's still a damn hospital, but a fairly cushy one as they go.
I had a routine appointment with Dr. Boasberg yesterday. No news, but I wasn't expecting any. As usual, everyone was upbeat and encouraging.
I'm still mystified by the fact that they have never suggested ways to improve my diet or lifestyle for fighting cancer. It is obvious that certain foods have an effect on the immune system, and that my long term survival depends on maintaining a strong immune system. Given that my immune system is basically at an equilibrium with the cancer, even small improvements could be very helpful.
Some facts I came across: The insulin released when you consume sugar (especially refined white sugar) suppresses the immune system. Some claim that the effect is rather strong. Cannibinoids (marijuana, Marinol) are immunosuppressants. Partially hydrogenated oils (evil for many reasons, but oh so common) suppress the creation of NK cells (natural killers, a type of white blood cell). Tumors consume large amounts of glucose, at a rate much faster than normal cells. Reducing the glucose in your diet can slow down tumor growth. Not all sugars are the same in this regard.
So I've stopped drinking soda. It's a good riddance anyway; I'd be healthier for it even if I didn't have cancer. I drink green tea during the day at work. I try (with limited success) to stay away from the Treyarch kitchen, where literally everything contains partially hydrogenated ingredients.
Last night I used a wonderful program called JHymn to remove Apple's copy protection from my music collection. I've bought quite a bit of music from their iTunes Music Store, and to appease the recording industry they've applied a digital restrictions mandation (DRM) system called FairPlay. It imposes a few limits, such as only being able to play the music on five computers. Unfortunately, I have a nasty habit of forgetting my account information, so copying my music to a new computer can be a hassle. Thanks to JHymn, all of the music I've purchased is free of restrictions, and I can move it between computers without any passwords or limits.
. . .
Online at the hospital!
Back from the hospital. It really wasn't too bad, except that I was sort of out of it today from all of the Ativan and Demerol (for nausea and shivers).
The hardest part about the hospital is watching people in really bad shape roll by on heart monitors, oxygen bottles, etc. It's disconcerting to listen to doctors debate probable survival times depending on whether or not they remove tumors and overhear phone conversations about patients who are just beginning treatment for something serious.
The hospital's free wifi network is great. It seems to have a web proxy that blocks some sites, but I'm not sure what criteria it uses. It blocked several sites that I know don't contain anything offensive. Strange; next time I'll have to have a remote HTTP proxy ready.
Melanoma. Heh. Heh. Eh. Hah. HAH. HAHAHAHAHAHA!!!! I blow my nose at you! Thppppt! Thpppt! I don't wanna talk to you no more, you empty headed animal food trough wiper! I fart in your general direction! Your mother was a hamster and your father smelt of elderberries! Now, go away, or I shall taunt you a second time! Hey, this one is for your mother! There you go. And this one's for your dad!
At the hospital for round three of maintenance.
I had scans yesterday.
They didn't go well.
There was overall disease progression. Two or three new lymph nodes are involved, the main lung tumor has grown, and there's a subcutaneous tumor on my left arm. It may have spread to my left scapula. But most importantly, there is a metastasis in my brain.
I'm going to have that removed with a gamma knife at USC this weekend. The procedure is fairly safe and does not require any incisions. Dr. Boasberg said this is a fairly common situation and doesn't seem overly concerned about it, other than the need to get it out of there immediately.
Interleukin-2 is not working. I'm moving to a different treatment. We are considering several options. One possibility is a form of Taxol, a common breast cancer chemotherapy.
Dr. Boasberg said I should also check to see what MD Anderson, a respected cancer center in Texas, has to offer.
There is still potential for keeping this under control. I'm not sure what the long-term prospects are, but there is absolutely no point in worrying about that. Stress just weakens the immune system.
The brain tumor is now an ex-tumor. I had gamma knife radiosurgery at USC. It went very well.
I arrived at 6am and was on the way home before noon. My forehead is sore from the titanium head frame (held in place by pointed bolts), but I'd rather deal with that than have the radiation miss the intended target.
The tumor was small, and we expect the gamma knife to have completely obliterated it without significant collateral damage to the surrounding area. It should dissolve over the next few months. I'll have another MRI scan in six weeks.
I had some strange visual artifacts yesterday. Occasionally images would pop out at me, triggered by whatever I was looking at. It felt as though the pattern recognition part of my brain was overstimulated. My actual field of view was not distorted at all, though. I wouldn't call them hallucinations.
They haven't appeared at all today. Nonetheless, I decided not to drive for the rest of the weekend, just to be safe. If any other weirdness occurs, of course I'll tell the neurosurgeon. But I don't think it's surprising, given what my brain has gone through lately.
My forehead is recovering well.
My shoulder ached quite a bit today, probably due to the supraclavicular lymph node, which apparently the International Astronomical Union is trying to name as a new planet due to its increasing size. I took some Vicodin, and I haven't heard from it since.
Annoying though it is, the lymph node itself isn't going to do any real harm, so painkillers are the best option for dealing with it for now.
My shoulder has continued to be annoying. I'm out of Vicodin. I'm going to see about getting more.
It's no real surprise that it's hurting, and I don't think it's an immediately dangerous problem, but it's still very bothersome.
I had no problem getting a Vicodin prescription. It's helping a lot. Thankfully my shoulder has been feeling better even without the painkillers.
I'm going skydiving today (tandem freefall in California City) to blow off stress. It is a documented fact that exhilirating activities increase the body's production of interleukins. Therefore, it is a medical necessity that I do this!
Skydiving was amazing as usual. There is no feeling quite like it.
My shoulder is more or less fine now, but I have random aches and pains in many places.
Sandy suggested that I switch to OxyContin (oxycodone) rather than taking Vicodin for an extended period of time, so I picked up a prescription for it today. It's a very potent narcotic analgesic much like Vicodin, but given in a slow-release tablet that lasts twelve hours. It should be about as effective as Vicodin once it kicks in. The advantage is that it provides continuous pain relief without the ups and downs associated with short-acting drugs like Vicodin. I'm starting with a relatively low dose of OxyContin. We'll increase it if necessary.
OxyContin is one of the most widely abused prescription drugs. People sometimes defeat the time release mechanism by crushing the tablets, resulting in a sudden rush of oxycodone. Needless to say, that's a bad idea.
I start a clinical trial of a Mederex monoclonal antibody next Thursday, June 3rd. We have high hopes for this. I know a lot of people have been praying for me, which I very much appreciate. This would be a very good time to continue doing so!
I'd like to thank everyone for their amazing support. It makes everything so much easier.
Had an MRI today. Hopefully there will be no excitement there. It wouldn't be the end of the world if something showed up on the scan, but it would probably mean delaying the Mederex trial, which would be bad. I don't relish the thought of another round with the gamma knife, but I've certainly been through worse inconveniences. Hopefully that won't be necessary.
OxyContin works well. I had very little pain when I woke up this morning. The effect is fairly constant. I was very drowsy yesterday but less so today.
Taking it on an empty stomach seems to be a bad idea.
This is a neat free book on MRI technology. It's fascinating stuff: http://www.cis.rit.edu/htbooks/mri/
I finally got results from last week's MRI scan. It looked good; the tumor we zapped with the gamma knife has shrunk, and there were no other tumors. So I'm going ahead with the monoclonal antibody trial tomorrow.
I had the first round of the monoclonal antibody clinical trial on Thursday. It's hard to know if I'm feeling any side effects from it; I've been rather lethargic for the past few days, but that's also caused by OxyContin. The treatment itself was very easy; four subcutaneous shots in my legs and one 90 minute IV. I dozed off for most of it.
The idea of the monoclonal antibody treatment is to disable an antibody called CTL4, which normally keeps the immune system from exceeding a certain level of activity. Without this antibody, the immune system can spin up to a much higher level, which increases its chances of being able to fight cancer cells. The monoclonal antibody is given with a melanoma peptide vaccine, which increases the immune system's sensitivity to a protein found on the surface of melanocytes (skin cells that can turn into melanoma).
Today I picked up some lidocaine spray to deal with an annoying subcutaneous tumor that's been hurting lately. It was tempting to instead pick up some hydrochloric acid spray and make the tumor cease to exist, but I don't think that would help the pain much.
According to http://www.cnn.com/2005/LAW/06/06/scotus.medical.marijuana/index.html , the supreme court has ruled that medical users of marijuana can be prosecuted by the federal government, regardless of state laws that specifically permit medical marijuana use. "The government argues its overall anti-drug campaign would be undermined by even limited patient exceptions."
So basically the Supreme Court just said that the DEA has the right to send me to prison for trying to control my chemotherapy nausea with marijuana, even though the drugs I was prescribed for this have worse side effects and simply don't work. What about the fact that my overall health is undermined by the side effects of chemotherapy, and marijuana is the only drug that significantly helped? Apparently that doesn't matter; I can go talk to Congress if I want the laws changed.
I'm making an effort to keep my political views out of this blog. This is about my effort to recover from melanoma, not about my misgivings with the current administration in Washington, DC. But this ruling made my blood boil. Once every member of the federal government has personally experienced chemotherapy and fully understands how bad it makes you feel, then they can get on their high horse about banning medical use of locally cultivated herbs. Until then, they can talk to my hand.
Our nation seriously needs to get its priorities straight.
I should clarify that I'm not upset with the Supreme Court. They just interpreted the law and expressed some regret over the circumstances. I am irate with Congress for standing by and doing nothing, with the current administration for proactively opposing medical marijuana, and with the DEA for actually using taxpayer resources to prosecute cancer patients who grow marijuana for their personal use.
I am puzzled by the administration's position. There is nothing immoral about using medicine to treat discomfort. Many drugs that are much more addictive and much more potentially harmful than marijuana are available from any pharmacy (such as the OxyContin I'm currently taking for pain). They have claimed that loosening restrictions on marijuana even slightly would undermine the overall campaign against illegal drugs, but how is marijuana different from any other useful drug in this regard, and what about the people who legitimately need it? The DEA website on medical marijuana claims that smoked marijuana is unlikely to ever be approved as a prescription drug because of the harmful effects of smoking, but is it impossible that the benefits of smoking an effective drug will ever outweigh the possible long-term health problems it could cause? Furthermore, why is it up to the federal government to decide this, as opposed to my doctor, who knows about my specific condition and can carefully weigh the benefits and drawbacks of the drugs he prescribes me?
Practically speaking, this ruling doesn't change much. Marijuana is extremely easy to obtain in California, even for someone like me with no real connections to the drug scene, and the laws are relaxed enough that getting caught with a small amount is not a significant legal risk. (Growing it is likely to bring the DEA to your doorstep, though.) I had no trouble obtaining and using marijuana when I needed it. It is very bothersome that the government considers me a criminal for doing so.
Let doctors decide which drugs are appropriate for their patients. The government's job is to make sure that whatever drugs the doctor prescribes are of good quality, not to question the doctor's judgement. Doctors have to go through a great deal of training for a reason. They are experts. The people who dictate policy in Washington, DC very often are not.
I was extremely lethargic yesterday. I slept in late, got up, took a long and very sleepy bath, went back to bed thinking it would only be for a little while, and finally got up and checked the time. It was 7:00pm. Oops.
The culprit is the OxyContin. It's not a particularly nice drug. It substantially reduces my appetite, but if I take it without food I become nauseous. If I take it in bed when I wake up, I'll likely have a very hard time getting up. But if I don't get up, start moving, and find something to eat very quickly, I'll become even more lethargic, and soon the whole day will be gone. It also makes me feel just slightly unwell overall.
I'm going to stop using the OxyContin for a while and rely entirely on Vicodin. I didn't take it this morning, and I have much more energy and generally feel much better than yesterday. Vicodin seems to not affect my energy nearly as much.
I took a half dose of OxyContin last night and skipped it today. I'll probably skip it tonight. I haven't been on it for very long, so I don't expect any significant withdrawal symptoms (especially since I'm still taking Vicodin).
I spoke with Sandy today. She says that the drowsiness would probably subside over time if I continued to take OxyContin, but it's fine if I don't want to as long as I feel OK without it, and believes the slight nausea I've experienced over the past few days is probably due to the monoclonal antibody treatment. If so, that's probably a good thing, since it would mean the treatment is starting to kick in.
Today was rough. I was nauseous when I got out of bed. A quick dash to the restroom, a few minutes of worshipping the porcelein icon, and a long bath offered only temporary relief. I went back to bed, but knew I had to get something in my stomach. Microwave macaroni didn't stay down for long. I finally mustered the energy to hike down to Subway, which I ate while taking another bath. That stayed down, and I feel better now.
It felt like I had a slight fever earlier today, but my good for nothing electronic thermometer assured me that I was nearing reptilian status at 95 degrees Fahrenheit.
If these are in fact symptoms of the monoclonal antibody, I'll accept them gladly. It's bothersome that I have no way of knowing for sure. I am tempted to bake it in the oven and see if it still offers such a conservative estimate.
I saw a Porcupine Tree concert last night. I've only recently discovered this group, and they're growing on my quickly. Whereas some groups tend to vary their live performances a bit with respect to their albums, this performance sounded almost identical. But it was very good and I had fun.
Dream Theater, probably my favorite group these days, just released their new album, Octavarium. I just bought it online and am listening to it for the first time. It is excellent as usual.
I just read a blog written by a 16 year old who told his parents he was gay and was sent to a fundamentalist Christian re-education camp. I can scarcely believe this sort of this goes on in today's world. The Bible says to love your neighbor as yourself. It does not say to put your children through severe emotional trauma for having physical attractions that you'd prefer they didn't. He's managed to post to his blog a couple of times since he started, and he's having a very rough time, but there's been an outpouring of support. I wish him the best and hope that his mind isn't damaged by the heavy brainwashing.
This also disturbs me: http://www.cnn.com/2005/LAW/06/09/cancer.battle.ap/index.html
A girl was taken from her parents into state custody when they disagreed with the doctors over how her cancer should be treated. The family objected to a round of radiation treatment, but the doctors believed it was necessary. Child Protective Services seized the girl, and a judge ruled that all decisions about the treatment would be made by the doctors. The case became somewhat simpler after PET scan results indicated that the radiation was definitely necessary and the parents dropped their objection.
So does this case establish the precedent that any parent who disagrees with a physician's advice is guilty of child neglect? Clearly the parents weren't neglecting to care for their daughter; indeed, she had already been through four rounds of chemotherapy at one of the most respected cancer treatment centers in the country (MD Anderson). Cancer treatment is severe and has serious side effects. The parents' reluctance to go forward with radiation treatment is understandable and indicates a concern for their daughter's wellbeing. Why, then, did the state get involved?
I would like to thank the Freenode IRC network for sending a link to this blog and my Relay for Life fundraising site out to the entire network. It gained a lot of attention and several very nice donations. Thanks also to everyone who has donated, particularly the #icculus.org crowd. Cancer research is an open-ended problem, but obviously the more resources the researchers have to work with, the more likely we will eventually succeed against cancer. Your donations mean a lot.
I went in for the second round of the Medarex clinical trial on Wednesday. I felt really bad in the morning, unable to keep my breakfast down and delaying my appointment by half an hour. I looked like hell when I showed up at the Angeles Clinic, which I think made something of an impression.
I've been feeling tired and a little sick since the last treatment, so I've been eating quite a bit less. This has resulted in an alarming amount of weight loss. Dr. Boasberg was very concerned about this, so he gave me an appetite stimulant and suggested I drink as many Boost drinks as possible.
I expressed some concern over the amount of acetaminophen in the painkillers I've been taking (hard on the liver), so Sandy gave me a prescription for Norco, which is similar to Vicodin but with a different hydrocodone to acetaminophen ratio (10/325 mg instead of 5/500 mg). I should be able to take fewer of these with equivalent results.
The treatment was less than pleasant, as usual, but tolerable. After collecting my prescriptions at the pharmacy, I came home, took a long bath, and slept.
On Thursday I actually felt quite good. I felt no nausea, had more energy, and had a good appetite. I don't know what specifically caused this, but it was a pleasant surprise. At that point I hadn't yet taken the appetite stimulant.
I'm doing fairly well today. I'm about to head to the grocery store and round up as much junk food as possible, as well as a supply of Boost. I need to gain weight; the more, the better.
I am very happy with the progress of our Relay for Life fundraiser. Thanks for your generosity, everyone, and please keep the donations coming! It all goes to a very important cause (melanoma research).
I felt well enough to go to work today. It was good to be back.
For some reason a lot of people seem to have the impression that I've beaten the cancer and that it's a free ride from here. That is not the case at all. It's all very much in the air still. We hope the clinical trial I'm on will be effective, but we don't know that yet.
I've had a lot of strange dreams lately. They center around the theme of losing control. None have been nightmares, per se. One involved not being able to stop a spider from killing fish in my aquarium (I used to keep one), and one involved driving slowly through a road in a train station and not being able to find the brake pedal with my foot.
Narcotics are known to induce dreams, and usually not good ones. I suspect they have something to do with my recent dreams.
I need to find some fireworks for tomorrow!
Happy July 4th!
I deleted some comments that bothered me from the comment area below. I don't know who left them, and I don't particularly care. If more inappropriate comments show up, I can delete them very easily.
So many herbal and dietary supplements, so hard to know which ones are worth anything.
I'm currently taking several: Bromelain, a pineapple stem extract that has been shown to have significant anticancerous properties, Artemisinin, a wormwood extract that reacts with iron, which is found in greater concentrations in cancerous cells, and Amygdalin, otherwise known as Vitamin B17, which the FDA raised quite a stink about a few years ago and made very hard to obtain. I also occasionally take Greens+ at the strong suggestion of a friend, but the pills are large and annoying, so I'm lazy about it. At a reader's suggestion, I'm thinking of adding Graviola to the list.
These may be worthless, or they may help. I suspect they'll help a little. They are far less toxic than any of the other drugs I've taken throughout this treatment, and as such there is really no reason not to try them. I have to be careful with Amygdalin and Artemisinin, which can be harmful in high doses, but then again so can anything.
PLEASE DONATE TO THE FIGHT AGAINST MELANOMA
Some friends and I have formed an American Cancer Society Relay for Life team called Team Melanoma. Our main goal is to raise money for cancer research. Please donate to our team through the following page:
All money goes to the American Cancer Society. We're asking for our donations to be used for melanoma research.
We are close to our final goal of $5000. We've raised about $4200 so far. See our page for the current status.
Third monoclonal antibody treatment today. It was originally scheduled for yesterday, but my stomach revolted and I cancelled my appointment. It just feels odd to call in sick... to the doctor's office.
It appears that some of my subcutaneous tumors having some sort of immune reaction. This is probably a good thing, and may indicate that the drug is working. I was very encouraged to hear this.
The treatment itself was dull and mildly annoying as usual, but not a problem. There are no noticeable side effects on the day of the treatment, and after picking up my prescriptions, I went home and took a very long bath while finishing off Neal Stephenson's Diamond Age.
I saw Dr. O'Day instead of Dr. Boasberg today. I think very highly of both of them. He suggested a couple more drugs to control nausea and alleviate the side effects of some of the other drugs. It feels like a game of whack-a-mole, but I think this will be an improvement.
It's amazing how relatively minor symptoms, such as nausea, a headache, and soreness, can combine to make you feel truly rotten, like you're about to keel over. I felt sort of like that yesterday. Thankfully I'm much better today. It's important to control the minor symptoms; even if the nausea isn't life-threatening in its own right, it can easily contribute to a downward spiral that I intend to avoid.
Wow, I didn't realize that it's been almost two weeks since I last posted.
It's been very hot in Los Angeles, and I recently bought two fans to keep the apartment tolerable. I'm still fairly tired, enough that I haven't been going to work, but at least the nausea has mostly gone away. I'm still optimistic about the overall status of the treatment.
I've been reading lots of books, and recently I started on the Harry Potter series. The first three were very lighthearted and enjoyable, but books four and five have gotten progressively darker. I'm looking forward to the end of five so I can move on to something else. Hopefully book six will be a little lighter, but it's notorious for a popular character getting killed. Overall, though the books are well written and very fast to read.
The American Cancer Society's Relay for Life was last weekend! It was fun and relaxing. Our team set up a tent to get out of the sun and killed time with Scattergories and Scrabble. I left around 1am, but some of the other team members camped overnight.
Although the Relay is over, the site will still accept donations for another month or so. If you haven't already donated and you wish to do so, please find the link to the site above.
I plan to split this blog into several sections so it doesn't take as long to reload, but I need to figure out the best way to do that. Meanwhile, please be patient with the unwieldy size of this page.
Long overdue for an update.
I had the final Medarex clinical trial treatment last Wednesday. It went about as expected (this was the fourth one, so it's kind of a routine). My blood hemoglobin had dropped so low that I received a two unit blood transfusion on Friday. I think this gave me a little more energy (at least it got rid of any anemia I may have had), but I'm still feeling very tired. Generally good, just tired.
I go in for scans next week, but I don't think the results will be interesting. There may be some new tumors and some of them may be swollen. We can tell that much just from the outside. We are still highly encouraged by the swelling and puffiness surrounding many of my subcutaneous tumors.
Where to from here? Who knows. Perhaps we'll wait a while and see how the swelling progresses. Ideally, of course, the cancer would eat itself alive and never come back. Nothing wrong with wishful thinking.
9/18/05 John Reeves Hall died September 17th at 9:40 PM. John/Reeves and his parents have appreciated your kind and supportive comments. Joan and George Hall.
John's guestbook is closed. You may leave messages to John's family and friends in the new guestbook on the home page http://overcode.yak.net/ .
The best way to reach me is by email, overcode at gmail dot com. I'm overcode32 on AOL Instant Messenger. I don't use MSN Messenger.
My cell phone is 310-428-3647.