"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!

2.5 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.