2.5 years and counting

Shirakawago ~白川郷~

Happy 2014!! 

It's been about 6 months since the last update, but I think that's a good sign; it means that nothing terrible has happened to me in between. There are few health concerns I have been suffering with--elevated temperature and fatigue--but otherwise I was healthy, both mind and body, enough to complete my master's degree and move back to Japan!

From my health point of view, I am relieved that I'm back in Japan indefinitely--not entirely because of health insurance, but I didn't feel that I clicked with the doctors in the U.S. I didn't have the time and luxury to try out different doctors in Seattle, but the doctor I was seeing apparently received "Best Doctor in Seattle" award in 2011. It was rewarding to be seeing a great doctor to follow up with, but it was unfortunate that we didn't click.

So, I had my biannual ultrasound checkup last week, and I went to see my doctor in University of Tsukuba to hear the result. The result was good, I suppose. There were few semi-large lymphnodes detected, two of them were a little bigger with characteristic of cancerous cell. As my doctor explained about the characteristic of cancerous lymphnode and size of my lynphnode, the shape reminded me of beans.

One is about the size of kidney bean, and another is about the size of soy bean. (The size I'm referring to is both in dry state). My doctor said "I don't consider them as cancer because they are so small, and we as doctors don't take actions until they are at least 2 cm long." Hummm, so it has to be as big as an average peanut shell, I guess. Anyway, there's nothing neither my doctor or I can do at this point, so I decided to set my worry aside. Yay!

Since I still have the strange symptom of elevated temperature and fatigue every month, for about one week, my doctor told me to go see him next time when I have this symptom. I was quite relieved to hear my doctor suggest this...all U.S. doctor said was "unfortunately I don't know why you're experiencing this symptom. How about we wait and see..." Their difference in providing medical support may be derived from the difference in healthcare system. The U.S. doctor may have been subconsciously aware how much I would be paying to go through all the tests to diagnose my symptom...?

2 years and counting!

I am now a 27 year-old graduate student at University of Washington. It was about 2 years ago when I was diagnosed with Hodgkin's lymphoma. Last academic year had been absolutely frenetic...I think I was trying to prove to myself that I can go back to school again, even though I was not at full health to be honest.

2 weeks ago I had a chance to be in Japan, and I also had a chance to see my doctor. I had X-ray diagnosis, which showed my perfectly beautiful lungs, according to my doctor. Yay!

Other than the visit to my doctor in Japan, I have also been going to Hall Health at my school quite often. I wished that I didn't have to go there so often, but I had constant light fever on and off, flu-like cold, and my thyroid hormone level had to be checked every few months or so.

So yes, I seem to have survived the cancer so far. But life is also not all about cancer. Since I started school there were so many times I felt like I wanted to cry because I wasn't feeling well that I didn't feel like I could finish homework, I could produce results for research, and I am not viable for social life. But when I face those difficulties, I try to tell my self that all these troubles are still incomparable to the craziness I experienced in chemotherapy, that I should be able to handle them since I've survived the worst. At least for now.

Fall quarter ended, and PET checkup

We had beautiful fall this year in Seattle! 

There were few moments in the past few months that I thought and planned about writing a post on my Angie's notes on Hodgkin's lymphoma blog. I failed miserably, and as my excuse, I was drowning in the turmoil of school work and research. Although it was one of the busiest quarter I have ever experienced, it was the most worthwhile one. I felt involved, fulfilled, and accomplished. I also had a very healthy and regular lifestyle; I went to sleep by 10~11pm, and woke up by 6:30am nearly everyday. If I had understood how efficient I can be with such lifestyle, I would have practiced it when I was an undergrad.

Since I began taking hormone medicine, I had been feeling really well. I still do get tired easier than average person, but I have been able to go to school and do well :) I did experience some stomach discomfort, but it's hard to say whether this is a side effects of the medication or just simply stress from school.

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Anyhow, I'm back in Japan now, and I went to get PET scan last week. Today I had an appointment with my doctor in Tsukuba University to hear the result. The test results were negative (hurrah!), and I will not be seeing him until next summer or so.

My doctor said that he normally lets his patients go with no further scheduling if not further cancer cell growth is observed for 5 years.



 

Cause related marketing and...my medication!

Walking with the crowd for Heart Walk in downtown!

Today I participated in 2012 Puget Sound Heart and Stroke Walk with a couple of friends. One of my friend was organizing a team for his company, so I decided to join! Fortunately the Seattle-like weather decided to take a break, which we had a beautiful sunny day! The walk was 3 miles, which made me a bit worried due to my lack of physical strengths, but I made it through!

Ever since I decided to participate in this event, I also came to ponder whether I should be participating the run/walk for lymphoma...which I have discussed in my past blog, it's called Pineapple Classic 5k run with obstacles. 

Honestly, I don't think I have regained my physical strengths enough to challenge this event, so I will most likely not participate.

However, it made me think about the cause/benefit event marketing in the United States. When I registered for the Heart Walk, I was very impressed with their marketing strategies. I had my own page on the event website that shows how much I contributed, how much I have raised, and next milestone for a gift giveaway. I felt strange receiving e-mails that says "XX won a VIP package to Bar & Lounge XYZ" because XX raised the most money last Thursday. I mean it's great that they are able to raise money for preventions and research for heart diseases, but I'm worried that some people may be forgetting the original intention and just taking an advantage of the event.

I also came to realize that I think the U.S. has the most number of cause related event organized in the world. Pink ribbon month (which is October yo!), Relay for Life (American Cancer Society event fighting against cancer, more like raising funds toward stem cell research in my understanding), Dance Marathon (a.k.a THON, a friend from Penn State told me about this before. Benefiting wigs for kids), Step Out: Walk to Stop Diabetes, etc etc etc...I bet every health related society has its own benefit event. And I think Leukima & Lymphoma Society event is one of the smaller ones, probably due to the smaller number of patients and survivors...

Enough about the cause related walk/run, I began taking hormone medication last week. I complained to my doctor in Seattle Cancer Care Alliance that my light fever doesn't seem to leave me, then he looked at my thyroid hormone level from my blood test. It showed somewhat higher level compared to an average person, which may have been caused by the radiation therapy. So he prescribed me a hormone medicine, to lower that level down a bit. So far it seems to be working alright. Although my fever level has not changed, I don't feel the fatigue or exhaustion I used to experience as much. Which is...good I guess?

Back to UW Hall Health

My sweet sweet roommate decorated our apartment with awesome bouquet! So sweet!!

Tomorrow is the end of second week of Autumn quarter at University of Washington! It was fast, but it was quite a bumpy road; I seemed to have caught cold as soon as I arrived Seattle, and my fever did not leave until the end of last week. Indeed, even now, when I get home tired from school my temperature is slightly higher than my average temperature.

There's a saying in Japanese, "body is honest" meaning human body expresses its health condition quite sensitively according to the environment. Whenever my temperature is up, it reminds me of that saying. There were few moments that I felt like maybe I'm not ready to be back at school. I felt like my body was punishing me for coming back to the States. Luckily I'm a lot better than last week, although I still need to be careful not to catch cold or work too hard.

Today I got to be back to UW Hall Health to see a nurse practitioner, who then referred me to Seattle Cancer Care Alliance (SCCA). Well, I don't know how referral usually works in the U.S. but when I said a nurse referred me, all she did was hand me a phone number to SCCA, which is also available online at seattlecca.org. Fortunately I was able to make an appointment at SCCA within few hours after my visit to the Hall Health, and it's scheduled to be next week Wednesday.

Although it was over one year ago when I first visited UW Hall Health for my swollen left neck, somehow I didn't have any emotional experience when I went there today. I was indifferent; perhaps I was trying not to think about it too much. I was also a bit nervous; it was a similar feeling I had when I visit the hospital in Japan.

Decision making for mind and body health

I had an appointment with my doctor this morning, to hear the results of ultrasound test. The result report produced by ultrasound technician indicated that the lymph nodes may be lymphomas. However, there was no size change of all nodes, and I have no symptoms(1) that show the sign of lymphoma growth; therefore, my doctor thinks that it is unlikely that lymphoma is back.

And my doctor didn't have much idea about the cause of my light fever. He said he never had a patient who experienced continual light fever 3 months after cancer treatments. Although antibiotics won't work on light fevers, he prescribed them in case that the bacterial infection on my tonsil was still active.

The question comes to, am I ready to go back to Seattle? My doctor said just go ahead and if there's any problem I should just come back to Japan. My mom is worried and I understand that. I'm worried, too. But I think not going back to school this autumn will stress me out even more...I can swear that I am not forcing myself to go back. That's for sure. This is what I want to do, and this seems to be the best option available for my body and mind.

I was really hoping that when I get to go back to Seattle, that's the time when I can throw "I kicked the cancer's butt" party, which I saw many cancer survivors from reading their blogs. I guess I won't be able to throw that party for another...4 years perhaps?

Traditional rice fields of Nagano (and a scarecrow made by kindergarden kids)
...I'm beginning to miss Nagano already!

(1) The symptoms that shows the sign of Hodgkin's disease are:

1. High fever (>38 C)
2. Night sweat
3. Weight loss

Ups and downs

Railway on the bridge of
Bessho line in Nagano

I have been very active for the past few weeks, considering where I've been and what I've been up to. However, my body has not been very cooperative unfortunately...I had a light fever last night again. For the past few weeks, I had lots of ups and downs. I feel good one day like a normal person, and the next day I feel sick. I believe my immune system is still not back to normal.

The new academic year of the University of Washington is starting on 24th of September. As of now, my plan is to get back to Seattle next week, and get ready for the school opening. I am nervous of my health condition, but I also don't know how long I should wait. Yes, I agree that my health should be priority, but my quality of life is as important.

People used to tell me that there is a long way to go in my life that there's nothing to rush. I agree that there's nothing to rush, but recently I've been feeling that human life is really short.I want to get back to Seattle to continue on my education again, even if I have to take it slowly.

Next week I get to hear the results of my ultrasound exam from last week. Unless there is anything urgent or serious, I am going to get on the flight back to Seattle.

My doctor suggested that I find a doctor in Seattle in case of emergency. Also, since he suggests that I take ultrasound exam every 3 months or so, so I think I will be back in Japan again in December.

Olympians, ultrasound result, another light fever, and another injured man in the lab

My heart pounded when I saw Kitajima so close!!

First of all, yes, I was one of the 500,000 people that rushed to Ginza last Monday (well, I was actually near there to run some errands as well) to see Olympians parade! It was SO crowded...I waited for 30 minutes, which wasn't too bad, and I got to see almost everyone I wanted to see so that was super exciting!


Last Friday I went in to the hospital to have my second ultrasound exam, then this week I got to hear the results. I thought this was going to be my last visit to the hospital in Japan for awhile, hopefully shake hands with my doctor and say "see you next year" (because I remember him saying that after all these I would just be checking my body once a year with him).  Unfortunately, it wasn't the case.

All my lymph nodes, or more like lymphomas, though they appear hyperechoic and inactive, they managed to increase its number. Last month ultrasound image showed three lymph nodes, but now there are four. My doctor said there is no sign of cancerous activity, but he suggested that I do another ultrasound next month just to be sure. And since my current plan is to be back in Seattle to continue on my graduate study this fall, my doctor suggested that I have ultrasound test every 3 months when I'm in the States.

Another reason why my doctor suggests frequent checkup is because of my lack of immune strength. Light fever came back to me after the last ultrasound test, and I'm on antibiotics again. I'm feeling better now, but I need to be pretty careful not to catch another cold.

I thought my last visit to the hospital will be the decision breaker, to be determined whether I will be back in the States in September or not. Well, there seems to be nothing I can really do to be absolutely sure that my lymphoma is deactivated, I'm planning on going to the States anyway.


Oh yes, and another injury story in my lab.

We had a BBQ after semi-annual research meeting few weeks ago at the university owned farm. We got good food, good drinks, and good people to hang out with. But when some people started getting high with some beers, they started to chase each other, and one guy managed to kick another guy's balls twice during the chase. In return, the guy with pain in his crotch made a Judo move to the kicker, the kicker fell down into a small ditch from his shoulder. The fell was critical. Since he was complaining about his shoulder pain, we took him to the nearest ER, which found out that he got his right collarbone into three pieces. He was hospitalized, had a surgery, and now he's on rehab.

What a lab. Too many broken bones in such a short period of time.

Women's soccer player, Sawa san!!! She was so cute!

Tonsil infection

As a result of CT scan, my doctor informed me that my left tonsil has bacterial infection, which has been causing light fever for 2 weeks. I'm glad to know the cause of my mysterious fever finally, and nothing like a recurrence of cancer, but I wondered if my doctor could have figured it out without CT scan. I really don't want any more radiation, if possible.

Now I'm on antibiotics for a week, hopefully my fever will all go away by then.

Give me no more radiation...please!

Light fever and...refashion!

Last week, as I've posted on my blog, I felt like running so I ran for about 20 minutes. Then next day, I went out to play badminton with the co-workers at my old work place for 2 hours. These ladies are super energetic and don't know how to stop! Anyhow, I was exhausted when I got home after the badminton practice, then when the mysterious light fever started in that night.

The temperature started around 37.2 C...then it occasionally went up to 37.6 C as maximum, but my body temperature stayed around 37 C for days. I was supposed to go to Nagano again this Tuesday to conduct research, but I decided to postpone, and went to the hospital instead.

It also was not a very lucky day for me to visit the hospital. I waited for 1 hour for blood test (the nurse forgot to call me actually), another 2 hours to see the doctor, went back to the lab for additional blood test, but the nurse at the lab said I don't need to take additional one, so I went to cashier, then cashier told me that I still need to get additional blood test, so I had to go back to the lab again...etcetc, which took additional 1.5 hour or so. So when my mom and I got out of the hospital, our parking said we were at the hospital for 6 hours!! It was the same length of wait time as the opening day of the newest attraction at Tokyo Disney Sea, Toy Story Mania.

I also went to take CT scan again, just to make sure that the fever is not caused by the recurrence of cancerous cells. CT scan is also not fun, with all the contrast medium, having to skip meal, and additional radiation.

Next week I will go into the hospital again to hear the results from the CT scan.

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Although I was dizzy from my light fever, I had extra time in my hand. Then I came across really cool blog called Refashionista. Basically this creative lady turns donated clothes into wonderful new clothes and blogs about it. She was so cool and I was so inspired that I decided to try out some refashioning of clothes that I got from my mom and my mom's friends:

Comfortable fabric but awkward length...

Yay!!

My image was making something like this on the magazine :P

Occasionally I would trim the length of skirts or pants I buy, but I never went further than that. This time I went ahead and made a ribbon belt ;)

One year anniversary

On my passport, I have immigration stamp that shows entering Narita, Japan on July 9th, 2011. It's been exactly one year since I got back to Japan for cancer treatment! I feel that time passed by quite fast, faster than usual, especially since I have lost time during chemo treatment.

Remembering chemo
The other day I had to look through medical bills and prescription lists for some purposes. Well, honestly, I couldn't really 'look through', and I could only glance at it, because apparently my body still remembers the names of the enemies who gave great suffering few months ago. I was nauseated.

Ever since I acquired peace in mind and busy time for few months, I sometimes forget what I had gone through. But such reaction of my body tells me what I experienced was indeed significant. I need to remember how lucky I am to be here. When I think that way, nausea from Pavlovian effect doesn't seem that bad.


One year anniversary memorial run
I finally felt like running today. I used to run once a week or so before I found out about lymphoma, but I hadn't run at all since then. Since the weather was nice, I changed to running wear, put my sneakers on, and got out of the house.
I ran for about 2 km, which is short, but enough for my first run in past one year. What's more important is continuing the run. Studies show that frequent exercise reduces chances of falling to cancer. Since I know how wonderful it is to go through cancer treatment, recurrence of cancer is my nightmare. I'm going to run at least once a week, rest of my life.

Remission phase II !!

I fell in love with soba noodles since I moved to Nagano...so good!!

A few days ago I had an appointment with my doctor to hear about the results of ultrasound test I went through about 10 days ago. When I entered my doctor's office, he stared at me for a second with a surprise, and exclaimed, "Your hair grew!" Yes, my hair has grown, perhaps about 1 cm since i saw him last time. The back of my head that had lost hair from radiotherapy is also no longer bald, it's full of  new born hair like baby's hair. It's awesome and I'm interested in experiencing how hairs harden and become stiff overtime.

So the super good news is that I cleared the second evaluation! Yay! Well, the ultrasound did detect something (dead lymphoma I hope) on my left lower neck, but they can't really determine the activity or the content of 'something', so t will need to go back in August for comparison.

Additionally, I began to notice the amount of saliva I produce in my mouth has decreased. This must be from radiotherapy, which was expected and explained by my radiology doctor earlier. Having less saliva is not going to kill me, but now I have to be careful of cavity much more, and I also have to worry about bad breath (since saliva helps clean inside your mouth).

Almost time for the next evaluation!

Solar Eclipse
On May 21st at 7:30am, I went out of the hotel to watch solar eclipse. It was first in 125 years for people on Honshu island (the main island of Japan) to be able to observe such a rare solar eclipse.  Although I understood the significance, I totally forgot to buy the proper glasses to watch the eclipse. Luckily (or more like intentionally) I ran into a kind dentist next door, who lend me his glasses for me to watch solar eclipse. The solar eclipse was beautiful! I couldn't take a good picture of it, but I took a a picture of 木漏れ日（sunshine diffracted through the tree, which normally exhibits circular pattern of light) that the kind next door dentist taught me (shown above). I hope you understand how exciting it was to see the waxing and waning of the sunshine pattern!!

Almost time for...
Next week I have an appointment with the hospital for ultrasound examination. As far as I touch my lower left neck, where lymphoma used to occupy, it doesn't feel like it grew back. I have a mixed feeling, I certainly hope there's nothing going wrong, but I also subconsciously became prepared for the worst case scenario. The feeling is similar to taking an exam at school; I just want to get over with it and hear the result, so I know what to do next, regardless of the result.

The other day I saw a short documentary on a member of a Japanese rockband, who had been diagnosed with malignant lymphoma. I couldn't watch the part where he was being dosed with chemo drugs, it still reminded me of old bad times. When he was going through the side effects, he told his wife that he had severe chest pain in the night that he thought was going to die. Then, his wife couldn't go to sleep because she thought he could die any minute, she had to place her hand on his nose to check if he was breathing every hour or so. When I heard that story, it was a little odd to me, because even though I experienced severe chest pain, stomach ache, nausea, and everything else, I never thought of an idea that I was going to die. I guess it's good that I was being positive in a way, but I just didn't think I would die that easily. I think I was also trying not to even think about it, because it only make myself and others sad. Well, the story is a little bit different with the rockstar because he seems to have been in stage III when he was diagnosed, and he is much older, in his 40s. I guess when you're young, you are, and you should be much more hopeful for the future ahead, regardless of the life you live in.

Fortunately the chemotherapy was successful for the rockstar, he started rocking the world again once he entered the remission stage, just like me.

Training period for getting back to school

A small shrine on the way to my current work place

For the past three weeks, I have been working in the lab for about 8 hours a day, from 8:30 to 18:00 on average. "Isn't that too much?", as some expressed their concern about my physical ability to work as an average young person. I like to believe that I am physically back to what I used to be, but I also had to remind myself that I had not been working for the past 6+ months or so. The result was that I started to feel fatigue and slight nausea when I worked for about 8 hours, so I go back home quickly when my body sends me that sort of signal that "your body can't work anymore." Recently I'm starting to think of my time at Shinshu University as a training period before getting back to school. It's nice to know beforehand about what I can handle at current state.

Other than that, I've been enjoying my time in Nagano. Many cities in this prefecture have histories from back in the 16th century, so it has been very enjoyable to walk around in such historic towns. Also, hanging out and working with people from my age group has also been fun, since I haven't had much interaction with people in general for the past few months.

Matsumoto Castle

What I've been up to

There hasn't been new posts because I was traveling and I have been quite healthy. On the last post I mentioned that my WBC# was low, but when I took the blood test again few days later, my WBC# was 4600, the number I haven't seen in months!! Although I had a light fever and felt tired by the end of the day usually even then, it was really nice to know my body's recovery.

Plum flowers in Ueda, Nagano

What have I been up to?

So the day after I went to check my blood for the second time, I went back to Taiwan with my mom and my friend Mary for one week. It was really great that my grandparents and I got to see each other after all the treatments.  They were definitely more worried about me than I was worried about myself, so I hope I was able to bring some relief to their mind.

The day after I came back from Taiwan, I was in Tokyo for a concert and had lunch with my uncle from Dallas. I had great time with my uncle, cherry blossoms were blooming.

Asakusa, Tokyo

Then few days after my trip to Taiwan, I packed up one suitcase and moved to Ueda city, Nagano prefecture, which is about 200 km northwest of Tokyo. I will be here until beginning of June, to begin again the research from I left at UW. I really appreciate my professor, my department, and Kimura lab at Shinshu University for providing me such opportunity. I have been pretty busy, a lot to be done everyday, and I've been enjoying it so far. I've been working about 8 hours a day, but I haven't felt fatigue or sick. I think this experience will not only be valuable to my academic learning, but also to recover fully before I go back to the life I left in Seattle.

Remission phase I

Mt. Fuji...so beautiful!!

The good news is that there was no sign of malignant tumor regrowth (forgive me for the less use of proper vocabularies) after 2 months of radiotherapy treatment!! I was nervous to hear the result, and I'm glad it turned out to be a good news. My next check up is scheduled on June 1st, for a ultrasound test. Then another one in August 3rd.


PET scan
Last week I had PET scan at a prefecture-owned hospital that was about 40 minutes north of my home. This is because Tsukuba University Hospital doesn't own PET machine, which was surprising to me since Tsukuba University Hospital is the largest and the only university-owned hospital in my prefecture, Ibaraki. Anyhow, the PET scan went smoothly, and it wasn't very different from the experience at the UW, the only thing is that patients were to be rested in a public room with a divider rather than a private room.

I learned that my fear for injection still exists, when the nurse was injecting contrast medium to my body I had to close my eyes because it reminded me of chemotherapy. Then I felt noxious after the PET scan was done, although that could be a side effect from contrast medium rather than Pavlovian effect.

WBC count low
Yesterday when I had a blood test womehow my WBC# was only 2200, where on average human has 4000~6000 WBCs. Both my doctors from haematology and radiology were unsure of the cause, thus I will need to go back to the hospital next week to check up my blood again.

Interestingly enough, my haematology doctor guessed that the low WBC# may be caused by radiotherapy. He guessed that the radiation may have hit bone marrow that it led to less production of WBC#. On the other hand, my radiology doctor said that the effect from radiotherapy is unlikely and he thinks the WBC# was influenced by chemotherapy.

I don't think they are necessarily trying to blame on each other, but it showed the difficulties of determining causation for any symptoms. And when one is specialized in a field, perhaps one is likely to point a finger to other fields, which is understandable, but we need someone to put the pieces together to show the big picture. This applies in any field.