Marking 5 years since the completion of treatment

There were many days in the past 2 years (oh my gosh!) that I thought of my health, what happened to my body, and then posting to this blog. I have indeed been extremely busy, and fortunately I have been able to survive doctorate study with no critical condition on my health. I am here today because I had a very last appointment with my doctor at Tsukuba University Hospital. The remission period of Hodgkin's lymphoma is 5 years, and this month marks 5 years since the completion of chemotherapy. I had a CT scan 2 weeks ago, and I got to hear the result today. The overall conclusions to the result of the CT scan was negative (phew!). However, technicians made many comments about what they observed from my CT scan image, like my larger than average sized spleen, but it's not something I should be concerned of, my doctor said, because it's the same size as 5 years ago. Anyhow, it was a good after all!

What does this mean to me now? 

Now I don't have to go to Tsukuba University Hospital occasionally for checkups. Since my thyroid hormone still needs some medical attention, I will be going to a local clinic to check my hormonal level every few months, but other than that I will no longer need a special medical attention. 

Am I back to normal? 

Well, I no longer know what "normal" means. I am grateful to be where I am now, and I am able to spend my daily life almost to the fullest. I say "almost" because of 2 reasons. One, I still experience fatigue occasionally, and this I believe is from the treatment I received. Regardless of how much I wanted to get my work done, when my body is fatigued, I just cannot do it. The second reason is shared by everybody else in the world. We all have ups and downs, regardless of how much we want everyday to be sunny with a sunshine. When there's a day where nothing works right, you just have to let the day go and chill. I feel like.

What am I up to?

I just had a pre-defense of my PhD thesis last week, fortunately I passed, and I have a first thesis draft submission due next month. After PhD, I don't know what I want to do yet. But I'm not really in that hurry, I'm just waiting for all the thesis craziness to go away before I make a good decision for myself.

Will this be the last post? 

I don't know. There are many things I wanted to put up on this blog, so maybe in the future if I have the time and in the mood of writing, I will certainly write a post again. 

My hair has exceeded what I used to have; I have more hair than before!

It's a beautiful fall in Japan!!

"Claim your experience, don't let it claim you"

Last week I went through a notorious cold, which I have not experienced for few years, perhaps since I completed my treatment. As high fever prolonged, my mom urged me to be treated by IV. I refused persistently because just the thought of IV reminded me of chemotherapy, and it made me want to throw up right there. Later I gave in to be treated with IV, but the doctor told me that I don't have to do it since I can still eat. At the end, acetaminophen lowered my fever and I am much better now.

As I write out my experiences associated with my health, I wonder if I'm doing this because I feel that I must, because I define myself as a cancer survivor. I never felt like calling myself a 'cancer survivor' but regardless of how I feel, I am indeed a 'cancer survivor'. I began to ponder because I happen to watch a TED talk named "Yes, I am a cancer survivor. But that doesn't define me" by Debra Jarvis.  (Shown below)

Debra talks about how bad experiences (e.g. cancer) should not define who you are, and you can still control your identity. In her talks, she asks, "if you were to tell 3 things about yourself to a stranger on a bus, what would you tell?" And she talks about one patient who shared her cancer treatment experiences in front of her daughters but the daughters decided to leave the room right after she finished her talk. For Debra, the patient let her cancer experience eat her up and defined her, and made her talk about her experiences, but it really shouldn't have been, and that's why her daughters left the room. Then I thought, but the patient was sharing her feelings with her own daughters, why should she not be able to do that? I understand if it was a stranger, but it's your own family member. 

Even to your own family member, it's difficult to share your own feelings. I did not want to make my mom worry, so I still have a tendency not to tell how I felt about the whole experience of cancer and its treatment. It may also be that I have been away from home for so long and I'm more of an introvert than extrovert. 

And to the friend I've met after the treatment, I've only told few about my cancer experience. I guess they were the only ones I felt comfortable telling. Before I told them, I actually felt unsafe and did not have the sense of belonging to the new environment. Then I wonder, am I letting my experience claim my identity? I should not have told my friends? Even though I didn't feel that I had to, but I simply wanted to share my personal experience?

I don't have an answer to this question yet, but I may find out as years pass by and see how my emotion and beliefs evolve. 

3 years and counting

Amazingly enough, it has been 3 years since the diagnosis of Hodgkin's lymphoma! I have been thinking about posting on the blog since June, because I knew that my Hodgkin's anniversary was coming at the beginning of July. It took awhile for me to get back here, but here I am.

Health wise, I am still suffering from the unknown fatigue and light fever (or elevated temperature, however you prefer to call it...) every 2~3 weeks or so, but the causal relationship between this symptom and the Hodgkin's treatment is unknown. My symptom has been continuing for so long that I am beginning to give up on curing them, and I'm fine with that. Many events happen in your life, and you just need to live with them sometimes. It sucks to experience fatigue every once in a while still, but this is not the biggest worry in my life.

I still take thyroid hormone for my thyroid hormonal level to be normal. My doctor talks about decreasing the dose every now and then, but whenever we change the dose, my body doesn't seem to cope with it very well. So we'll just continue on as is for now.

And what have I been up to recently? Since the last post, I've traveled some, and I was lucky and fortunate enough to get accepted into the PhD program at the University of Tokyo, and I've started my (hopefully) three year program last April. I just finished my first semester 2 weeks ago, and it has been busy but fruitful life.

One good news is that I was finally able to publish my first paper on a pretty good journal :) I have been wanting this for a long time, since I was sick as well, so I was very happy to receive acceptance on my paper. I even wished upon Daruma (shown below in purple)--I'm glad I was able to give him 2 eyes after 1.5 years!

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.

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!

"Don't hurt your own body" party

A solar cell I made ;)

I'm back in Nagano again to work on research for my master's thesis. For this post, I want to share an interesting, yet somewhat disturbing (to me) experience yesterday.

Last night, I went out with a group of students from the lab I work with for a dinner. It was to celebrate the birthday of one student, who also just got discharged from a hospital. This student, I will call him student A, busted his right hand by himself from punching really hard 2 weeks ago. Nobody really seemed to know the full detail of how or why he did it, but apparently he got really angry at himself after some meeting, went ahead to the building's exit door (which was made of steels), punched extremely hard once, which broke all fingers except the thumb. Students called 911 when they saw student A with a bloody injured hand, and he was sent to a hospital, which kept him for 11 days.

Since the hospital kept him for so long, I thought he may be psychologically unstable (and I mean, he broke his own hands from anger!?) but it seemed like he was just fine, and other students also seemed to not worry about that.

At the dinner party, after he brew the candles, he told his fellows, "don't hurt your own body" as he laughed. Everyone also laughed, except myself. I was simply, sad, to hear the student A say that as a joke, and that everyone also took it as a joke. I also realized that I am not the same as before. I don't get jokes that assume that your health is eternal, at least when you are young.

Perhaps because my life was threatened at one point, and I still live in the fear or recurrence. You may be young and healthy, but you are never young forever, and if your body and soul are healthy, enjoy and live at full while you can. I know it's not easy, but please remember to appreciate that what you have may be extraordinary to some others.

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.

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.

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.

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.