Chemo Update

Hey, I survived my first chemo session! Actually, it was pretty anti-climatic. Dad and I got there at 8 am and were shown around the infusion floor. There are about 50 rooms, each with a bed, comfy looking chair, and a TV. There are also heated cabinets filled with warm blankets, and a couple of food rooms that we can raid for juice, water, cookies and other things.

The chemo itself was pretty much like Marcia said. First they hooked up an IV with a drip which made me cold as the stuff entered my veins, and injected me with one of the drugs to make sure that I wasn't allergic to it. After waiting for me to not be allergic to it for an hour, they started with the other drugs, and just let them drip into me. I was there for 4 hours thursday, but only because it was my first time. I think it should take only 1 or 2 hours from now on.

After all the bad things I've heard about chemo, so far this is a piece of cake. They gave me some anti-nausia drugs that cost $425 for 10 pills, and some anti-anxiousness drugs that they said was basically strong Valium, and would also work really well if I was having trouble sleeping. So far, I haven't felt sick or anything at all, but I guess it will be the second dose in two weeks that will do me in. I think it builds up to be worse the second time. We'll see.

This is the Day!

It's 5:55am, and I'm having breakfast and getting ready to go in for Chemo. I have to be in Seattle by 8:00, but since trafffic around here is so unpredictable, we will leave at 6. We'll probably get to Seattle way too early, but there's always the chance that traffic will be really bad, and we'd be late if we didn't leave this early.

I talked to the nurse that is in charge of my treatment yesterday, about what will be happening. For the last week, I've had a pain in my shoulder and neck that is probably caused by the tumor in my neck, so I got a pain killer prescription from her for that. She says that once chemo starts, the tumors will probably dissolve so quickly that not only will the pain in the neck go away, but I will probably have a strange feeling in my chest from all the organs and my lung moving back into their proper places. They will be giving me some medication to counter the effects of all that broken down tumor tissue entering my bloodstream to prevent it from becoming toxic. Also in the coming weeks, I will have to start watching how and what I eat to prevent bacteria that would normally not effect me, from making me sick as my white blood cell count lowers.

That's all for now. I'll try to post when I come back.

Decisions, Decisions, Decisions

After spending the week reading over medical journals on Hodgkin's treatments, I've decided to go with ABVD for my treatment. It was quite hard to make the decision based only on the affects of the treatment, because each negative seemed to have some positive that outweighed it. Going through the medical journal articles, I was able find some that compared the overall success of ABVD and Stanford V directly. Some of the earlier studies only showed that Stanford V was an effective treatment, but the later studies showed that Stanford V was not as effective as ABVD. Over all, rate of reoccurrence of disease seems to be higher with Stanford V, and the long term cure and survivability rates of ABVD are much higher.

The possibility of lung and heart damage still worries me, but I have found some information on the Nation Cancer Institute website about supplements that seem to make the heart and lungs resist damage while taking the drugs that cause it, so I will ask my doctor about that. I still have one more appointment at the UW hospital next tuesday (relating to Meg's concern of not having any little Aarons running around) so I will be starting my chemo next thursday. I've just called them up and let them know, so they will be arranging things and calling me in the next few days to get things set up. I kind of wish I could just start it today though. I'm not as impatient as I was before, but it'd still be nice to get it going.

So doing nothing this weekend. Maybe I'll be able to get my film developed. One is going to be hard. I'll either have to trick them into thinking it's regular film, convince them that developing this non-regular film will not cause their machines to blow up, or take it somewhere that understands ( and charges $20 per roll...)

Choices, Choices, Choices

Last friday, I had my second appointment with my doctors, and they discussed their findings and the two treatment options. The CT-scan and PET-scan both showed that nothing has gotten worse since my scans in Tokyo, and also that it has not spread beyond my lymph system and spleen. Therefore, there are two ways they can treat me. ABVD, named for the four toxic chemicals they will pump through my body, or Stanford V, named for the five toxic chemicals they will pump through my body, and the institution that developed it.

ABVD is what has been used for Hodgkin's for the last 20 or more years, and is pretty tried and true. It will be 6 courses, lasting a month each, injected every 2 weeks. The side affects are hair loss, nausea, general crappieness, etc. in the short term, and possible heart and lung scarring in the long term.

Stanford V is a newer treatment developed by stanford, but it too has been around for a while. But because of the relative rarity of Hodgkin's, it's still in trails. The main benefit of Stanford V is that it takes only half the time of ABVD. It would be 3 months, with injections every week. The short term side affects are about the same as ABVD, but one of the ingredients is something called nitrogen mustard, a derivative of mustard gas. It was one of the first chemicals used for cancer treatment, but has long since been replaced with others. Now it is back, but in much lower doses. Some of the side affects are sterility and a possible reassurance of other forms of cancer. In the old days, this would be about a 15% chance. With the Standford V, my doctors have said that it's probably 1 to 2%, and sterility is also uncommon. Also, with Stanford V, less of the chemicals that could cause heart and lung scarring are used in lower doses.

The nitrogen mustards sound pretty ugly, but really, it's a pretty close call. ABVD has been successfully used for a long time, but its 6 months and has a risk of scarring, while Stanford V is much quicker and has a lower risk of heart and lung scarring, but has a tiny chance of causing a secondary cancer.

I am worried about the possible heart or lung problems, and I like the 3 months vs. 6 months of the Stanford V, but I don't like the 1 to 2% re-occurance rate vs. .1% of ABVD. So right now I'm still trying to decide between the two. Treatment will probably start friday.

Seeing People

I finally went to see some doctors last friday. I am going to the Seattle Cancer Care Alliance, which is a building on the corner of the Fred Hutchinson Cancer Research Center on Lake Union in Seattle. I have two doctors, one who is staff at the Cancer Care Alliance, and the head doctor, Stephen Petersdorf, who is a professor of Oncology at the UW. Last friday, we talked about the disease, treatment, and got some more tests and a CT-scan done.

This week, I will have 3 appointment, including a PET-scan at he UW Medical Center, and an appointment to finalize the treatment plans. Probably, I will start treatment by next week. I'm happy about deciding to come here because I think its the best possible place I could choose to have treatment. I don't like how long its going to take, but I have no other choice but to stay and finish everything before I get my life back on track.

I have a bunch of film sitting in the fridge, so if anyone knows someone with a negative scanner, let me know. I had to leave mine in my apartment in Tokyo.

Going somewhere

I haven't updated in a while, because there's really been nothing happening since Ai left a weeks ago. I've been hung up on trying to get copies of the biopsy slides from my hospital in Tokyo. The oncologist here said it would be much quicker to wait for them than start over here, but I was starting to have doubts. My doctor here emailed the doctor in Tokyo asking him to FedEx them, but when Ai called last week, she found out that he was on vacation, but was assured that he'd send them as soon as possible. The really frustrating thing is that I asked him for all this stuff weeks ago, but he said some of it would take too long. Apparently he only did the stuff that he could have done the next day for me to pick up before I left for Seattle. So he's finally sent them, and they arrived at my oncologist today, so I finally have an appointment this friday. Hopefully, I'll be able to start my treatment next week.

The Results

I know, you've been waiting for the results of the biopsy for a few weeks longer than I have. But Kelsey complained and make a stink about me telling everyone that I was in the hospital via my blog, so even though that wasn't the case, I decided to wait a bit longer. What they pulled out of my neck was a bit of Hodgkin's Lymphoma, so after thinking it through for a bit, I bought a round trip ticket to Seattle, and left Thursday and arrived in Seattle a few hours before I left.

For the last three days, I've been waiting for my doctors here to get everything together. Ma had been searching for a doctor that speaks Japanese to translate my medical records, but was unsuccessful until we found out that the local doctor that I was seeing for a referral was a Japanese major in college and had lived in Osaka. So he translated the stuff that needed to be done and faxed it to the clinic that I'm going to.

Ai has to go home tomorrow morning, and hopefully, I will get into the clinic tomorrow or monday.

Weather Maps and Beer

You can, of course drink beer at any time of the year, but summer, when it's hot and muggy, is the best. So leave it to Japan to make the next logical connection: use beer to indicate weather conditions. This map on Yahoo!'s weather site shows apparently how much beer you will need at the end of a hot, muggy day. (Tokyo's currently at 4 beers, while Okinawa is the highest, at 5 beers.) They also offer other ways to gauge the weather, by UV rays , heat syndrome (heat stroke?), and sweat . Now you all need to call your local TV stations and ask them to provide such a helpful reference. You don't want to end up with too few beers on a killer day.

Insurance and Thailand

One thing I didn't tell last week was how much my hospital stay cost me. I thought that I wouldn't be much since the day that I had 3 blood tests, a CT Scan, X-ray and Ultrasound cost only $20, but it ended up costing me about $900. It turns out that the insurance wouldn't cover any of the hospital stay since I was in a two person room. If I was in a dormitory style cheapo bed, then they would have covered it. But when I was asked what kind of room I wanted, I said that I didn't have much money, so I wanted the cheapest they had, so I don't know what else I could have done. In addition, the handbook that they gave me when I signed up for insurance said nothing about not paying for hospitalization in the section called "Treatment not covered by insurance" It's kind of ridiculous that they will cover the cheapest room, but not any part of a more expensive room at all. I spent some time today pestering the health insurance guy at the city hall about it, but he didn't budge, so Ai's mom said she'd call for me. Apparently, she's good at stuff like that.

This huge expense is really bad because I'm going to Thailand in just over a week. I really can't afford it until after I get my paycheck for this month, but the problems is that I don't get this months pay until the day after I leave. Anyway, we've planned out our trip, and made hotel reservations for the nights that weren't covered by the travel agency, and Ai's very excited. I'm still working and stuff, so I haven't really had any time to think about it. My last day of work for summer is July 22nd.

Surgery!!!

This is me at the hospital! Why am I in the hospital? I have a papaya sized lump (that's a Brazilian sized papaya) in my chest. So I was in surgery yesterday afternoon to have part of the lymph in my neck removed. It felt like they were pulling a lot more out of that, but anyway, I'm fine now. I'm taking a day off work tomorrow, but I'll be back at work on Thursday. I'll hear what the stuff they pulled out was made of on the 15th.

Kyle's still here. He never really left my apartment because he couldn't find his way to the station, and yesterday it rained the whole time. So today when I got home from the hospital, Ai and I took him to Shibuya, Harajuku and Shinjuku, then went out for dinner at a sushi place. We got him a ticket for the bullet train to Osaka tomorrow, so I'm taking him to Tokyo station in the morning.