The hair story

Recently I saw a video clip on TV about a singer who went through a chemotherapy, where he took a picture of himself every single day to show the changes in his condition through appearance. It was cool to see how he lost his hair bit by bit, went to bald, then hair regrew bit by bit again. I didn't take as many pictures as he did, but I'm going to try something similar to it today.

September 2011

It looks like I still have a lot of hair here, but I remember starting to get annoyed by abnormally shedding. Hairs fell as I shake my head side to side. 

Radiotherapy took a lot of my hair away. It was interesting to see how it should look like when you compare my lower back head with that of my sister's.

1 week after radiotherapy started

My sister's head in comparison

December 2011, how I look normally at home

My hair looks like this now. It's just really thin. I thank my parents to have me born with thick and a lot of hair!

January 2012, how I look normally outside

Then wigging in...

I showed a picture of me in the 'newscaster style' wig to a couple of friends.It was interesting to hear people's opinion on this.

"You look like a Chinese actress!"
"The perfect hairstyle that cannot be achieved by natural hair."
"Looks like a spy, and it's fashionable."

I've never had a hairstyle like this, so it was kind of fun to play around with. But I made a very silly mistake by trying to straighten the artificial hair by hair iron, which burned a small part of the hair right before the wedding that I attended. Fortunately it wasn't very obvious!

And I have to say, that I don't enjoy wearing wig at all. I don't understand my aunt who loves it and wears it all the time. Wearing a wig always gave me headache because I don't like having anything tightening my head. However, miraculously, I did not have any trouble on my friend's wedding day...very strange. I had to wear the wig for 8 hours that day. My assumption is the constant consumption of alcohol that may have made my headache go away. So perhaps...alcohol should come with wig next time as well :P

February 2012, with a wig on

Radiotherapy 4 + 5 ...unsalted life and burned skin, but it's done!!

I went to see a panda with Jiro a few days ago to Ueno zoo. She was not very friendly :P

Jiro was visiting me for the past two weeks, which had been very nice to have him around. The bad news is that sadly he left yesterday, but the good news is that I finished all my scheduled treatments yesterday!! My next appointment is in two weeks, where I will discuss with my doctor for evaluations and I'm hoping to know when I will be released.

Unsalted life
About three weeks ago I realized that nothings was tasting yummy. Everything I ate tasted bitter or tasteless. I first thought that either my mom messed up the food or restaurants weren't cooking well anymore. But I was the wrong one. The radiation also reached my tongue and parts of my tongue was burned (confirmed by my doctor), which made me taste food funny. The other day I ate a ramen noodle, which I didn't taste anything for the soup. Since the soup was soy sauce based, I concluded that the taste I'm lacking is the saltiness. Life without salt is very unpleasant, especially since I enjoy eating a lot. On the other hand, it has been quite interesting to find out how much salts are in every food. Now I'm using my tongue as a salt detector (not a very good one though, haha). My burned tongue is expected to be healed in about 1~2 weeks..I hope it'll be back sooner!

Burned skin
As for my other body condition, I had a light fever last week, but I also learned that the fever was caused by my burned skin. Because the radiation also passes my left armpit, my left armpit was suffering greatly from severe burns. There were few days that I couldn't lift my left arm. Currently most of my burned skins on my left armpit and both sides of my neck were peeled off, and I don't have any pain. I never had a sunburn in my life, so it reminds me once again, how intense the radiation is.

Radiotherapy week 3

A Happy New Year!
I wish the year of 2012 will bring hopes and joys to all of you.

The first radiotherapy appointment of the year of 2012 was on January 4th. I was feeling quite well over the short 'winter break' I had from the therapy, but as soon as the therapy resumed, throat sore, light fevers and light nausea also came back. I discussed my symptoms with my doctor, and he said they may be from radiotherapy, or they could simply be cold. I was also guessing that my symptoms may be from Pavlovian effect caused by the past chemotherapy madness, but I'm not sure.

Radiotherapy and X-Ray Diffraction (XRD)

I guess I still am an engineer. Despite the side effects, radiotherapy stimulates much more interests than chemotherapy. First of all, the radiotherapy machine is as overwhelming as CT scan machine, and it has a large arm that rotates to aim X-ray correctly to my body. The machine reminds me greatly of XRD machine. I feel like a test sample in XRD when I'm being exposed to X-ray.

During the treatment, I am fixed in place on a stage by a plastic cover unique to my face that fits perfectly (Left image). Again, it's like fixing a sample on the stage for XRD machine! It's nice to be excited about the treatment, although I'm sure it'll still be even nicer to be done.

"Wakame-Chan" Hair

I am exposed to X-ray radiation from both from front and back of my body. Currently the area exposed to radiation is quite large and it is schedule to minimize and pin down the area starting from mid next week. Because lower back of my head is also exposed to strong radiation, I felt burn-like pain and started shedding around that area like crazy last week. I no longer have the burning pain but now I have close to no hair on the lower back of my head. My sister said my hair could look like a cartoon character, Wakame-Chan (Right image) if I cut my hair shorter. I believe this is a rare opportunity to look just like her, but I declined my sister's suggestion.

Radiotherapy week 1

Lunar eclipse on 12/10/2011

Radiotherapy has been alright so far. It's better than chemotherapy for sure, but it's not a fun experience still. I wish all treatments are exciting in some way that it could reduce psychological stress on patients.

Each appointment of radiotherapy takes about 15 minutes, where the 1 minute is used for actually radiating my body, and rest of the time is spent for preparation of the machine. Fortunately, there has been no long waiting time involved for radiotherapy; radiology department knows how to schedule patients well :P

There is no pain involved in the therapy, but it maybe because I caught cold or more from psychological stress from being at hospital everyday that I have been feeling noxious all week.

Although I am scheduled to be at the hospital on the weekdays, I realized that I won't have any full consecutive 5 days that I have to go to the hospital. Next week there's a holiday for Emperor's birthday, then the week after is new year's break that the hospital is closed. I hope my nausea will disappear completely soon and no side effects appear at all, so that I can be in the festive mood soon!

Chemo 8/8 attempt failed :(

Unfortunately, my white blood cell count and segs (segmented neutrophils) was insufficient to carry on the chemotherapy yesterday. (WBC# = 1700, SEG = 34 %, where if the seg count is less than 500 the patient is at increased risk of infection). I will be going into hospital again this Friday, and hopefully the WBC# is increased enough to do the last round of chemotherapy!

Strangely enough, even though I didn't have chemotherapy yesterday, I was feeling noxious and tired all day. I always feel nervous on the day and the day before chemo, so maybe the body was anticipating the horror of chemo every other week.

4/8 (?) Chemotherapy

My new hobby:
making flowers out of ribbons

On September 6th, Tuesday, I started to feel sick as soon as I entered the hospital. My mind and body was rejecting the reality that I have to do chemo again. My WBC# was 1900, which my doctor told me that it is insufficient to do the next round of chemotherapy as usual. Instead of the chemo menu I had been doing, only one drug (drug A) with reduced amount was injected into my body. So overall it only took 15 minutes, whereas it usually takes about 5 hours.

Just because this round was a short one, it didn't make my life any better. After the chemo, I still had nausea, loss of appetite, and light fever. Interestingly, I did not have ache in my mouth; I guess it was true that each drug causes different type of side effects.

Today I'm finally feeling better enough to turn on a computer and such, but I still feel sick thinking about chemotherapy and anything relevant to it. Even just thinking about the names of chemo drugs or seeing a scene of hospital on TV makes me noxious. I wonder if this is caused psychologically? And I wonder if there is anything I can do about this. Could I somehow train my mental to not send "sick" signal to brain when I think about chemotherapy?

On the title of this post, I wrote a question mark because it wasn't a full round of chemotherapy that I'm not sure if I'll have to do more rounds to make up. I'll have to talk to my doctor again...

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.    

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.

1/8 Chemotherapy

After first round of chemotherapy...it got smaller already!

I got back from hospital just a few hours ago, and the good news is that I don't have to go back into hospitalization anymore!!! From now on, all the treatments will be done as an outpatient. The idea of hospitalization this week was to determine the kind of side effects I might experience.

I couldn't go to sleep the night before, simply scared of the start of chemotherapy. I was distressed and frightened about losing my current body, by injecting all these drugs. To kill my lymphoma, I will be harming my other body parts as a payback. I cried for about two hours, then fell asleep. I felt fresh the next morning, thinking that crying was necessary for me to prepare mentally.

The first round of chemotherapy started at 7:00am on 7/24, with delivering anti-nausea drug through IV. Around  10:30am my doctor came and started inserting drug in the order of the name (A -> B-> D -> V). I didn't experience that much of a pain on vein that was expected from drug D. The last drug, V pretty much caused all the side effects I had later in the day and rest of the week---nausea, upset stomach, constipation, and mouth/tongue ache. The second and the third day was the worst---I couldn't eat, and I only felt better when I was laying down on the bed on my side. I lost 2 kg this week. I need to gain the weight back :(

The IVs were removed by the night of the second day. On the fourth day I felt somewhat better so I decided to go to the hospital shop to buy something. My room was located on the 10th floor, and I decided to go down by stairs, hoping to move my body a little bit. I went back up by elevator, but by the time I got back to my room my legs were shaking! Today, my legs are sore! I realized that my muscles atrophied really quickly. Today I'm determined to do light exercise everyday, at least 1 hour everyday.

Amazingly, my lymphoma shrunk a lot from the first round of chemotherapy. According to the head doctor of the Department of Hematology, Dr. Chiba, my swollen lymphnodes were stuck together, but now they are separated due to shrinkage. I got to meet Dr. Chiba on his once a week so-called "Professor's hospital rounds" (教授回診) where the head doctor of the department walk around to see patients with twenty other people, who are students and associate professors from his department. If any of you have seen the Japanese drama called The White Tower (白い巨塔), it was just like that. It represented the hierarchy in the world of physicians in Japan.

Surprisingly, my white blood cell count is really low already (~2900 on the fourth day (yesterday), where on average people have 4000~6000), so I need to be really careful about infection. Now I wear a mask at home, plan to not go out until my next visit, and need to make sure that my parents wash their hands and gaggle when they come home. My goal is to gain the weight and strength back before the next round of chemo, which is scheduled on 8/9.

My treatment plan--ABVD chemotherapy

My parents, myself and my doctor discussed the chemotherapy plan last night. It is going to be the standard ABVD chemotherapy. I'll list out main points, possible side effects, and other questions discussed.

Main points

• My lymphoma is determined to be at stage 2a. They found two more tiny lymphoma on my left side chest and near left armpit
• Each alphabet of ABVD stands for a different type of drug
• Drugs will be administer every 2 week, for 8 times (One dose for every other week)
• Radiation therapy to follow after the completion of chemotherapy
• 80 % chance of long-live when treated with chemotherapy + radiation therapy

Side effects

• Hair loss (will grow back once chemotherapy is done)
• Nausea
• Possible damages to lungs, heart, veins, kidney, etc etc etc...

Other discussions

• Chemotherapy should not have a high effect on fertility (my doctor found this paper: Hematol Oncol 2007; 25: 11-15)
• Radiation therapy will only be applied on the affected area, which is far from my ovary; thus the doctor thinks it's unlikely to have an effect on my future pregnancy
• No restriction on food...I can eat whatever I want!

If I could figure out how to plug in a calendar on my blog, I will....but it'll be a week or so later.

Hospitalization schedule determined

I received a call from TUH and I will be hospitalized from next week Tuesday. I think they'll be moving my blood and bone marrow test to Tuesday as well. The first cycle of chemotherapy should also start once the test results are out.

I'm glad things are moving quickly and smoothly. I don't know if there will be Wi-Fi in the hospital because Japanese people are anal about having any type of electromagnetic waves near patients with heart pace maker and other sensitive equipment. Anyhow, I will try to keep it updated whenever possible...