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. 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.

(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. 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 dye. 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. 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.

(1/16/05)Be it decreed: I shall have no more Reglan or Benadryl. Nausea, I can deal with; nearly suicidal depression and restlessness, absolutely not.

(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. (**editors note, do the math at $40k a round, not including all the additional cost of scans!) 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.

(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 (i.e., 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.

(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 owing additional taxes. I plan to return to work on the 16th (this Wednesday).

(3/10/05) I had a routine appointment with Dr. XXXXXXX 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.

(4/27/05) 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. XXXXXXXX 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. XXXXXXXX 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.

(5/5/05) The brain tumor is now an ex-tumor. I had gamma knife radiosurgery at USC. It went very well. I arrived at 6 AM 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.

(5/7/05) 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.

(5/12/05) 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. 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!

(6/5/05) 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. 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.

(7/10/05) 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.

(8/11/05) 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.

(This brave young man, XXXX XXXX died September 17th 2005 at 9:40 PM.)