Radiotherapy...0/15~20

Leaves changing colors!! 

First radiotherapy appointment

Today I had an appointment with my radiology doctor to discuss about my treatment plan. The Radiology Department was a lot less crowded; my appointment time was at 10 am, I arrived there at 9:50 am thinking that I will wait for 1~2 hours, but I got to see my doctor at 10:15 am!! Amazing. 

Here are the details on my radiation therapy plan:

• Total of 15~20 radiation will be done, one treatment everyday starting from next week Wednesday
• The radiation strength of 20 to 30 Gy will be applied to the area where my lymphoma first appeared (left lower neck, left chest, and left armpit

Possible side effects:

• Throat sore (so no alcohol for another 3 weeks :( )
• Skin where the radiation was applied will turn red temporarily
• The radiation treatment may also affect salivary gland, which may permanently decrease the amount of saliva production
• The radiation treatment will increase the chances of the onset of cancer in the future, like in 10~30 years

After the doctor's appointment, I got to make a mask for the radiation treatment. I didn't know what to expect, but it was indeed interesting. I'll write about my experience in the next posting. 

もみじ... Japanese Maple

Radiation

Now I think back, I have been taking long flights (normally 8+ hours flight) at least twice a year since I was fourteen, I have done 2 CT scan so far, and now I will be going through radiation therapy. Not only that, I live in Japan now, where the Fukushima nuclear accident has not yet been resolved. That's a lot of radiation I've been and will be exposed, more than what an average human being would be exposed in his/her lifetime. Will this onset another cancer later in my life? I certainly hope not. 

And guess what?

My internal medicine doctor (who I had been seeing every week) told me that my blood count is sufficient for me to start eating anything. This means I can start eating sushi everyday, again! Nevertheless, my doctor said I should still avoid crowds so I can decrease the chance of catching cold. 

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.

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.