3/8 Chemotherapy...plane ride, side effects, and dreams

It's hard to tell but my collar bone is back!
But when I touch the area I can still feel the broken up lymphoma. 

Chemotherapy is like a plane ride. The only difference is that chemo doesn't really take you to anywhere exciting (or cancer-less world?). In order to get on the plane, passing through the long line for TSA is inevitable, just like the blood test is necessary before beginning chemo. I had been waiting for at least 45 minutes to get blood drawn every time, because there is always a long long line of people waiting to get blood test done, regardless of how early I arrive. Then, when you get on the plane, nausea hits you the entire plane ride, at least for me for most of the time. After the drug injection in chemo, I have this similar feeling of being on the plane for a few days with nausea. And with all the endless aftershocks in Japan, chemotherapy experience, for me, has just been like one traumatic plane ride.

As for the aftermath of 3/8 chemo, I had a light fever for the whole week last week, it felt almost worse than last time. It is the third time for drug injection, so it could be that the body is reacting to the drug even harder. There was a new side effect that appeared on my fingers:

These dark lines at the edge of my nails are present on all my fingers, but not on my toes. My doctor said some people get horizontal lines on the finger nails, too. 

Because I was once again not feeling well for the whole week, I slept more than half of the day every day. And almost every time I slept I had a dream, and when I woke up I get confused whether I am still dreaming or I'm back in reality. I dreamed about food often, even though my appetite was abnormal. I dreamed about eating apple pie, Indian food, KFC, McDonald's, and just really random food. Additionally, the most exciting dream I had was seeing everyone I knew. Somehow everybody decided to gather at my home and I saw so many people that I missed very much. After realizing that it was a dream, I wanted to see and talk to people so badly, and I wanted to become normal again even badly.

Last Tuesday my WBC# was back to 2100. Tomorrow I have the weekly doctor's visit. Hopefully the WBC# is still near 2000; perhaps it's time to drink Ensure and eat ripe bananas.

Recent photos#2

Baked a cheesecake with my sister

Gifts from Yukari...Duffy and ShelliMay

...and Mike!

With Yukari. She looks really cute with her new hair!

I haven't changed much, even though I've been able to make a golf ball out of the hair I lose during shower everyday. I have a feeling that I'm going to lose A LOT of hair this week after my third round of chemo. Maybe a size of softball? I think about the hair loss often, but I'm still not sad. I'm ready for it!

Numbers, numbers, numbers...Hodgkin's incidence rate

Hodgkin's lymphoma is a relatively rare type of disease, especially when compared with other cancer diseases. But how rare is that? I understand that there is no answer to why I got Hodgkin's lymphoma, just like there are countless unknowns with the mechanism of human body, but I wanted to know how 'special' am I to get this disease compare to everything else in the world.

In the U.S:

• About 8,000 (4,400 males and 3,820 females) cases detected every year, representing about 11 % of all lymphoma diagnosis. (1)
• Between 2002-2006, 12 per 100,000 Asian/Pacific Islander women in the U.S. were diagnosed with Hodgkin's lymphoma
• Where as the number is 20 per 100,000 women for White, the highest among all races (2)

In Japan:

• Hodgkin's lymphoma represents about 5 % of all lymphoma diagnosis in Japan
• 6 per 100,000 women in Japan are diagnosed with lymphoma per year (3)
• I per 100,000 is diagnosed with Hodgkin's lymphoma (4)

Other stats

• 3.85 per 100,000 people died from car accident in Japan, in 2009 (5)
• 24.9 per 100,000 people committed suicide in Japan, in 2010 (6)
• 10 our of 10,000 people may smell sounds, researchers says (7)
• 1 our of 10,000 people live to be 100 in the U.S. (8)

In conclusion, it seems like my disease is as rare as living till 100 in the United States. It is still hard to believe what I have, and I don't know how I should react to the fact. Sometimes I feel like I don't give enough thoughts to it.

References

1. Leukemia and Lymphoma Society

2. National Cancer Institute, Surveillance Epidemiology and End Results 

3. Goo healthcare, 悪性リンパ腫
4. Journal of the Japanese Society of Internal Medicine, No.7, p1825

5. 日本の交通事情, Universal Traffic Management Society of Japan
6．｢自殺｣、Wikipedia
7. Researchers: 1 Out of 1000 people may smell sounds, Foxnews, 2007
8. Medical researcher believes HDL may be key to a long life, Palm Beach Daily News, 2011

MY WBC is back!

A pix of gross medicine for my stomach...
it has a viscosity of liquid glue, taste
 of a bubble gum, and I get
to drink this 3 times a day to make my
stomach feel better :P

Yesterday I had a weekly checkup at the hospital, and amazingly, my white blood cell count (WBC#) increased from 2100 to 2500!! I don't exactly know what I did that was good for my blood cells, but it was a very pleasant surprise. Previously, my doctor told me that there isn't really a way to increase the WBC# unless we inject medicine into the body, so I was only expecting WBC# to decrease again. My doctor didn't give me much reason to why it increased, but it showed me that there may be something I can do about WBC#.

My aunt told me to drink Ensure and some people told me to eat ripe bananas for WBC# to increase. There aren't scientific explanations to neither of those, but that's what I ate and drunk, so I'm going to keep on going with it and see what happens next week!

Also, to decrease the pain I experienced on my vein, my doctor recommended that I do push ups, so that I can strengthen and thicken my vein. I confessed my doctor that, "I couldn't do push ups even when I was healthy." He looked at me, got silent for a bit, then laughed quietly. I guess he couldn't give me advice on how to do push ups...

2/8 Chemotherapy --- heat, zombie in pain, and hair

My doctor said my lymphoma got even smaller...I guess so?

It has been one week since my last post---there were a lot happened (sort of). I finally feel better to provide updates on my status.


My home's AC was not fixed until 3 days ago, so we spent 5 days last week sweating and whining. It was one of the hottest week for Japan, too...the temperature was 35+ C everyday with the humidity of 50+%. Also, it was even worse for me because I just had the second round of chemotherapy.


On Tuesday, 8/9, I went into the hospital around 9 am, and I was out by 4:30 pm. My WBC# was 2100; it is expected to decrease as I go on and there is no way to increase the value unless I inject the drug to increase the WBC. The chemo went alright, but worse than last time because the D drug was so painful during the injection. My vein at the location of needle was in crazy pain, it felt like someone was pinching my arm really hard for one hour, I thought the drug was going to squeeze my arm to necrosis. As soon as all the drugs were injected, nausea and stomach ache arrived. I quickly went back home with my mom, and started laying down on the bed in the hot steamy no-AC house. 


For the next 5 days, I felt like was a zombie in pain (or is zombie always in pain?). I had no motivation to do anything but lay down on the bed, I had consistent stomach ache, chest pain, and my body was fatigued all day. It almost felt like this time was worse than last time. And this time, I finally realized why so many people kept telling me to "stay strong." If I didn't 'stay strong', I would have fallen apart both mentally and physically. It meant a lot more than I imagined, to have wonderful people send me messages that push my back to stay firm.
------
Additionally, new side effect arrived the day after my second round; hair loss. Slowly but surely, I'm shedding. Yesterday I was able to make a hairball with a size of golfball from taking shower.


I read a number of blogs by lymphoma patients, and Rose Egge, a reporter from komonews (thanks to Suzie!) stated, "It took just a few strands for me to realize I may never be mentally prepared to lose my hair." Perhaps because I don't have great attachment toward my hair, I don't feel that I am emotionally affected by my hair loss, or maybe not just yet. I'm even curious to know how my scalp looks like, and sometimes looking forward for 'new hair'. I heard from so many people that one of the best thing about after chemo was that their new hair grew out so pretty with no damages!. 


My mom and I started to discuss about whether to purchase a wig or not. You can buy a cheap one with under $100, but the question is more of whether I will need it? Not to brag, but I do have a lot of hair. When I told Jiro that I'm starting to lose hair, he said "I think you have more hair than you can lose." Humm, I hope so. Another question is will I want a wig? That I will have to wait until my hair is gone and see how I feel about it.    

Broken AC and tomorrow

My home's air conditioner showed error and stopped working yesterday. The AC company is supposed to come later today and hopefully they can fix it today... Currently the temperature (indoor thermometer) shows 32 C, with humidity of 65 %. You can do the conversion. It's been a really wet day. Especially because I have been wearing a mask at home too!! The half of my face is sweating extra bad. Anyhow, I had been spending nearly entire day inside my house with AC for the past couple of days, so I felt that the Japanese summer was finally here :P

Tomorrow is my second round, the end of first cool of chemo. One cool of my chemotherapy is defined as 14 days, where the drug is injected every 14th day after the last injection. Recently I have been able to eat normally, though I haven't been able to gain any extra pounds or kilos. Hopefully the white blood cell count is sufficient enough to get to the next chemo. I am still a little nervous for tomorrow, and I have a feeling that this anxiety will never disappear until I am done with chemo.

Preserved flowers

Yesterday my best friend since my age was one digit, Sawako, visited me with a surprise gift! She brought beautiful preserved flowers!! I've never seen any preserved flowers as big and stunning...the flowers and her visit totally made my day.

From the last experience, I'm expecting to spend most of my time in my room the first 2~3 days after the chemo, so I'm planning on placing this vase somewhere that I can see from my bed. The only problem is that there has been earthquakes nearly everyday still, so I need to carefully chose a location where the vase would not fall off.

As for my condition, my weight is still around 44 kg, and still has a light stomach ache but otherwise I can eat pretty normally.

Doctor's visit

I went to TUH today for a followup of last week's chemo. The 'appointment time' was at 10:30 but as I've expected, by the time I saw my doctor was at 12:30. The white blood cell count was still 2900, which is low. But the doctor said as long as it's above 2000, I could continue on to the next round of chemo; nevertheless, higher the better. If it goes below 2900, I'll either have to wait a couple more days before the next round or they will decrease the amount of drug to inject. This also means that I should not go out to crowds and continue to wear a mask everywhere.

My weight is still around 44.3 kg or so...it's more difficult than I expected! (Even though I'm home all day long pretty much, drinking 1~2 cups of Ensure...) Thanks for those of you who gave me advice on weight gain tips. I hope to try them as much as I can.