Need to gain weight!

Now my weight is around 44 kg, and I'm aiming 46 kg before my next chemo. What am I eating now? Well, I still do not have much appetite and my sense of taste also changed that I'm still trying to figure out what I would and would not eat. I started to not like vegetables much (surprise!). Anyhow, to increase my weight and protein intake, my aunt who experienced ovary cancer last year sent me a four cans of Ensure protein powders from Taiwan. They are originally the U.S. products and there isn't anything like it in Japan. Now I am trying to drink two cups of Ensure protein shake everyday. Hopefully it works.

I also started drinking plum tea, hoping to strengthen immune system in my body. Hopefully, this works too.

If anyone has an idea about how to increase weight and strengthen my body...what to eat, what to do...let me know!! I have no restriction on my diet at this point, just nothing raw.

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.

Recent me

I found them on my home's stairs...they used to be on the separate shelf but both fell down during the 3/11 earthquake, so my dad decided to put them together so they can support each other : D  

With my sister, the day before I went into chemotherapy. I cut my hair short.

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.

Lots and lots of testings...

I was at Tsukuba University Hospital for the past 4 days, and my doctor gave me a permission for go home over the weekend. I will be going back to hospital Sunday night, and my chemotherapy will start next week Monday.

List out all the testings I went through

Tuesday: Blood test, X-ray, Electrocardiography

Wednesday: Bone marrow test (which I HATED IT!!)

Thursday: CT scan

Friday: Blood test, Echocardiography, lung test

Bone marrow test was the worst...it felt like the doctor was deforming my bone ;(

All these test were necessary to determine whether my disease has spread anywhere else in my body, and whether my body would be a good fit with the drugs I will be taking.

It may look like I did a lot each day but I was bored all the other time. Next tells the condition of the hospital.

A day in a life of a patient at TUH

Nurses wake you up at 6am. They take your temperature, weight, blood pressure, and oxygen content (in a body?) three times a day. Breakfast at 7:30 am. Lunch at 11:30 am. Dinner at 5:30 pm. Lights out at 9pm.

I shared a big room on the 10th floor of TUH with 4 other ladies, where each bed was separated by a curtain. One talkative lady had leukemia. One girl across from me seemed to be going through chemo that I heard her vomiting and murmuring often. The girl on right of my bed was treating something through radiation therapy. She was playing game (probably Nintendo DS) all night, all day long. I ate almost every meal with the lady on the left of my bed, at a cafeteria. It seemed like we were the only two from the room that could walk around freely.

Each patient could rent a TV for 240 yen per day. We weren't supposed to watch TV after lights out, but people did anyway. There were no internet available for patients. I could use my cellphone, but people were encouraged to only use the cellphone at a lounge, and turn off the cellphone otherwise, which nobody really did. It seemed like there were a lot of rules that were just there but nobody really followed. (In the bathroom, there was a sign saying "If you want to brush your teeth or shave, please find the appropriate time so that the bathroom would not be crowded at certain time. Please be considerate to others and do not use the sink for a long period of time.")

I realized yet again that Japanese people are very passive, even in hospital. When nurses ask me to measure blood pressure, they would always say "Could you please let me measure your blood pressure? (血圧を測らせていただけますか？）" In the States, it'll just be "Let's take your blood pressure." Even the doctors, when the treatment plan was finalized, my doctor said, "I was wondering if you could let us treat you this way.（このような治療法でやらせていただきたいのですが。）" I mean, I could only say "yes." They're all so polite that I felt like I don't know what I'm doing here anymore.

Symptoms of Hodgkin's

There were a lot of questions that doctors asked, which are common symptoms of Hodgkin's (or more like tumors in general). I'm going to list the symptoms that I was asked over and over, as a reference from my experience.

• Weight loss
• Fatigue easily
• Sweat at night
• Loss of appetite
• Fever

I'm sure there are more, some may be more common than others. The only symptom I seemed to have was itching, and I had no other symptoms.

Yukari's visit

Yesterday Yukari and Yukari's mom came all the way to Tsukuba to visit. We ate lunch together, and went for shopping! I totally forgot to take pictures but I will definitely do so next time.

It was really really nice to see them. Especially since I hadn't been out of house often or had an opportunity to meet people other than my parents (and people from hospitals). I really felt that friends and families are the one that brings me emotional strength.

One of my aunt in Tokyo sent me a big can of shark fin (ふかひれ). Supposedly this is good for recovery from chemotherapy....we'll see about that :p

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...

How it looks

The patients of almost all blogs on Hodgkin's I read were female in their early twenties. Many of them experienced swollen lymphoma on their left neck as well. I thought it would be a good idea to show a picture of how my lymphoma looks as a reference. This image was taken about one week after my first clinical visit, presumably 1~1.5 months since it started swelling. When I touch it, it feels like a ball of flexed muscle.

I had a long hair, and I wear a turtle neck or scarves around my neck most of the time, so it was difficult for people to notice, and even for myself because it never hurt. I learned that just because something doesn't hurt, your body can still be going wrong.

1st doctor's appointment at Tsukuba University Hospital

Tsukuba University Hospital is the largest hospital near my home. Here I'm going to highlight what happened at Tsukuba University Hospital (TUH from now on), and my progress on curing Hodgkin's lymphoma.

Long waiting time

My mom and I entered and submitted a request of visit form with a referral letter to the admin desk of TUH at 9:30 am on Tuesday. The desks open at 9 am but it was full of patients already. I had a so-called "reservation" to see a doctor at sometimes in AM (apparently you can only reserve to be seen on AM or PM :p), but when I finally got to see the doctor, it was past 1 pm. I saw him for about 15 minutes. Yukari (a friend) said "that's like Disneyland's ride." I agreed.

Lack of privacy

One thing I felt strongly from this visit was a lack of privacy. When an admin lady at the clinical desk explained about the process of hospitalization, she was standing in the middle of waiting room, where people were listening quietly from 1 m away. Also when I went to submit paperwork for hospitalization to some sort of office within TUH, people could see and hear that I will be hospitalized, when and where. I'm not sure if I have this perspective because I've been living in the States for a long time?

Progress on Hodgkin's

The doctor first apologized for not wearing a formal uniform due to the whole cool biz in Japan. He was wearing a polo shirt and slacks. Here are the gist of what I learned from the first visit:

• Hodgkin's disease is rare for Japanese (only around 10 % of Japanese lymphoma patients are diagnosed with Hodgkin's)
• There is a standard treatment plan (標準治療法) for Hodgkin's lymphoma, set by Ministry of Health of some sort, which means the treatment should be the same anywhere available in Japan
• The itch I had been experiencing all over my body may be one of the symptom of Hodgkin's
• It will take around 6 months for the whole treatment plan
• The treatment will be a combination of chemotherapy and radiation
• I will be hospitalized for the first cycle of chemotherapy for a couple of days, but depending on my condition, I may be able to commute from home for rest of the cycles

Although I'm not Japanese by blood, I heard Hodgkin's is more common among ethnic backgrounds other than Asian.

My Hodgkin's story

I am Angie (and/or Eri :p), and I am a 25 years old graduate student at University of Washington. I was diagnosed with classical Hodgkin's lymphoma on July 8th, 2011.

I noticed that there was something bumpy on my lower left neck back in April~May of 2011, but I didn't pay much attention to it because I had no pain, nor any symptom that suggests abnormality in my health condition. Then on the second week of June, my roommate saw my neck and told me that there is something big on my neck. I also consulted with my mother who is a dentist about this bump on my neck, and she insisted me to go see a doctor right away.

I went to the school's Hall Health first, where I went through a blood test, X-ray, then ultrasound. The healthcare practitioner then made a doctor's appointment with UW Medical Center's Otolaryngology, Head and Neck Surgery Center. After that I went through a PET scan, then a surgical biopsy. These whole process--from the first clinic visit to the diagnosis-- took 4 weeks in total. It was one of the most stressful weeks of my life. My mom from Japan also came to see me right before my surgical biopsy.

Through the results of the surgical biopsy, the diagnosis was determined. I had more than one lymph nodes swollen, and the largest one was as big as 7 cm in diameter. The stage was determined to be in between 2 and 3. Then soon I took a flight from Seattle to Japan with my mom, for the treatment.

Fortunately I was able to see a doctor in Tsukuba University Hospital just a few days after my homecoming. The doctor told me that I should be able to start the treatment as soon as next week or the week after, and scheduled me to have another blood test and bone marrow biopsy next Thursday.

It was on the second week of Summer Quarter at the time of my diagnosis. I withdrew from one class that I was registered, packed all my stuff and subleased my apartment, told my professor that I cannot be working on research for awhile, and will be submitting leave of absence from school for the next 6 months or so.