Tuesday, September 22, 2009

Happiness and Acromegaly

This was a piece written by Ayaka, one of my friends in the Acromegaly Community family.

People around me often say, “You’re always smiling and looking really happy.” In fact, I always try to think about good things, so that must be why I smile all the time. Not only that, I also think it is wonderful for me to just being in this world alive and to live a normal life, so I feel quite happy. However, my smile is possibly a byproduct of my so-called “intractable disease” in Japanese medical system. My smile is my greatest strength. By smiling, I am also trying to repay the kindness of people who have supported me in so many ways, and if possible, I wish I can give people some hope through my smile.

My disease is a chronic illness, called “acromegaly.” Acromegaly is incurable. It is not associated with lifestyle, and the cause of this disease is unknown. Approximately 4-6 out of 1 million are diagnosed with this disease each year, so it is a very rare disease.

Acromegaly is a medical condition where you have too much growth hormone in your body. It is due to a growth hormone producing tumor on your pituitary, which is located under the hypothalamus. I had a tumor, measured about 7cm on my pituitary. I was twenty-four when I was diagnosed. This big tumor compressed my optic nerves, so I lost peripheral vision. The first surgery of my life was a neurosurgery.

At that point, I had not yet experienced any serious illness, so I did not know that the surgery was merely the beginning of the life with a medical condition. The surgery itself was a great success, but my life after the operation became pretty difficult.

At first, I absolutely hated needles, and I was scared of and hated the monthly blood tests and intramuscular injections. Particularly, the needle for the IM injection was 19 gauze and 1.5 inches long (about 3.81cm). I would felt, “I can’t stand the injections with such a big needle every single month for rest of my life. It’s impossible…” The side-effects of this medication include but not limited to the pain from the injection, fatigue, abdominal pain, diarrhea, anorexia (loss of appetite), depression, light-headedness, and headache. What is more, one dose of this medication costs ¥60,000-70,000 JPN (approximately $600-700 USD). I need to receive one dose each month. In other words, my monthly medical expense is at least ¥60,000-70,000. “I can’t believe the shot is painful, side-effects are bad, and it is so expensive! How can I seriously live with this disease?” I questioned the necessity of this medication because of all the downside of it, but I found that I would die by ten years earlier if I would not receive the medication. In addition, I was most likely to get complications, such as colon cancer, cardiomegaly, or partial blindness. To prevent these things, I need to get the expensive, painful, and harsh injections.

Complications of acromegaly are many. In my case, some of the complications are pre-diabetes, chronic headache, chronic fatigue, and goiter. As you can see, none of these medical conditions are visible. It’s hard to have just one of these conditions, but if you have all of them, it is even harder. I can still live normally with all these conditions, like my doctors say. However, few people know that being “normal” is more challenging than it seems, so I often feel that I am not understood.

Have you ever felt profoundly tired when you caught bad cold? Chronic fatigue is like you feel that way all the time. Have you ever had a bad hangover headache? My headache comes twice or three times a month usually, and I cannot even stay awake with the pain. Imagine living in such body every single day. For me, living “normally” itself can be hard. Even so, fortunately or unfortunately, I look completely normal, so not many people understand how I really feel. Just to note, however, that not all the people with acromegaly have exactly the same symptoms that I have. Some patients can enjoy intense sports while the other cannot walk easily with a lot of complications.

I have now talked about the challenge to live with acromegaly, but it is not only hardships that I have experienced while I live with multiple chronic illnesses. It is true that I need to deal with a lot of difficulties that I would not have to deal with if I were strong and healthy. Sometimes, I do feel very discouraged, but it does not mean that I feel unhappy. I have gained a lot of important things through my illnesses, and I even feel blessed quite often. First, I became someone who can feel others’ pain. Second, I met a lot of wonderful people through my medical conditions, I was touched by their kindness, and I made precious friends who are very supportive and understanding.

Third, I started being more aware of the limitation of our given time (=life) and how precious it is. In such a limited time, what really matters is how we can make our lives the most meaningful. I had known this in head, but I had not understood by heart until the diagnosis. Now, I started thinking about our happiness all the time. If we cannot feel happy in this limited time, how vain our lives are? When I question myself like this, I became more positive, and made up my mind: “I must become happy no matter what medical conditions I have. I’m the one who’s in charge of making myself happy and cheerful.”

Although I am trying to maintain positive attitude, I sometimes feel depressed. Now and then, I cursed my life, or I thought I would rather die. Each time I was in such a negative mood, however, I thought of all the people who have saved my life and supported me all the way, and I felt warm in my heart. I do not want to give up living so easily, but rather, I want to live as hard as possible with my doctors, family, friends, peers, and their love and support. I think I went to the lowest point, feeling hopeless, and because of that experience, I became much stronger. My smile is the symbol of my strength.

I came this far, but until I made my way up here, there were a lot of hardships, and I am still in this battle. Although I continue facing challenges after challenges, I decided not to lose hopes. I am supported by many people, including my primary physician, Prof. Hizuka at Tokyo Women’s Medical University Hospital / Endocrinology Center. I want to repay all the kindness that they gave me when I needed the most, but it is just too tremendous. I finally came to the conclusion that what I can do to repay is my smile/happiness, and to pass on their good deeds to others. I may not be able to smile like I am now if I did not have to live with chronic medical conditions, so I am convinced that my whole experience with acromegaly is a blessing. I want to give some hopes to as many people as possible through my smile. This is my greatest wish for now, and I do believe it is one of the most important works I can do.


polarchip said...

This post literally brings tears to my eyes. I identify with so much of Ayaka's experience, but have never been able to express it in such an eloquent way.

Bravo, Ayaka, you are truly an inspiration.

magpie said...

Wow, Ayaka. Wonderful post.

Just one little thing. Acromegaly is not incurable. In cases like mine, after undergoing surgery the condition disappeared. You cannot distinguish my bloodwork from the bloodwork of a person who never had acromegaly.

I have to go to checkups at the hospital every year, in case of regrowth, but in my particular case, my acromegaly was cured.

Saying it is incurable only discourages people reading our blog looking for support.

Alecia E. said...

"I started being more aware of the limitation of our given time (=life) and how precious it is. In such a limited time, what really matters is how we can make our lives the most meaningful."

Well said! Thanks for posting this, Wayne. I can identify with a lot of the struggles Ayaka faced, and appreciate her willingness to share her experience. I wish Ayaka the best as she continues to live with acromegaly. Accepting the condition is not always easy, and it's a life long struggle.

I agree with Magpie that there is hope for cure, and in rare cases acromegaly can go into remission or even be cured. I have small residual tumor, but I have been in remission from acromegaly for 4 years.

Sara said...

Hi, I'm Ayaka :)
Saying a big hello from Japan (^o^)/~~~
Thank you everyone for your comment! Also, I really appreciate Wayne for sharing my short essay with you. magpie and Alecia E are right... I heard there are some rare cases of remission of acro. I don't know how many times I have wished it would happen to me.
Anyway, thank you very much for reading!

Unknown said...

I just wanted to make sure that Acromegaly is not incurable. Take a look at checkorphan.org Here is the disease information. http://www.checkorphan.org/disease/acromegaly

Anonymous said...

Wow Ayaka. You are wise, strong and beautiful. Living with acromegaly can be frustrating but you can still do anything you want in life. I am a Japanese person born and raised in Canada. At 34 years old, I was diagnosed with a pituitary Timor and acromegaly. I suffered a stroke after surgery. I have come far. I learned to walk again. My life is different. I can not work so I have to find other things to make me happy. I get a CT scan every year to monitor my pituitary(surgery did not remove all the Timor). Then because of the brain injury I had with the stroke, the oncologist did not want me to have radiation. So I have been on octreotide Inections monthly. After 10 years, it has kept my growth hormone levels within normal range. This is a manageable disease. One day, maybe a cure will be found to cure us completely. It is a very rare disease. So , I guess I can say I am unique in a way. It has taught me to enjoy life while I can. Different than the life I once imagined but I live with more gratitude and patience than before. Sure we have been given a challenge but we can still find happiness and live life with joy. Acceptance is part of the journey. You can not long for if only. And what if's. It is your time to live each day fully. Find things that bring you happiness. The journey will be easier to surround yourself with people who are positive, encouraging and supportive. Sending you all my ❤️❤️❤️ On your journey.

❤️AJ Sato