A widower groping his way

My wife heesun died on May 2nd, 2012 at 12:05 pm. My attempt to cure her of glioblastoma was a big fat failure. Or I might say, I had a success in prolonging her life up to 34 months with unsuccessful surgery, interrupted chemo and radiation and numerous supplements. But her quality of life during the last 20 months was so bad that I hesitate to call what we had a success.  Anyway, now is the time for me to move on just like my wife did. Since my wife died, I turned my focus on to different topics. They are near-death experience and quantum physics. I want to understand the reality behind what happened to us and what she would have from the moment she left me. One recent realization that I had is time may not flow and all the past moments simply exist forever as they were in the time-space continuum in the universe. That means I can still love my wife in the past because she still exists in the frozen "presents" that are scattered in the whole continuum.

The first thing I wanted to know when I learned that my wife got glioblastoma was how long she would live from the time of diagnosis. I guess this would be the case of most caregivers. Here are some of the information I gathered about life expectancy of GBM. 1) 13 months (Harrison's principles of internal medicine) Treated with dexamethasone alone following surgery, the mean survival of patients <65 years with glioblastoma is 7 to 9 months. Survival is prolonged to 11 to 13 months with radiation therapy. Focal brain irradiation is less toxic and is as effective as whole-brain radiation for primary glial tumors. Radiation is generally administered to the tumor mass, as defined by contrast enhancement on a CT or MRI scan, plus a 3- to 4-cm margin. A total dose of 5000 to 7000 cGy is administered in 25 to 35 equal fractions, 5 days per week. Chemotherapy is marginally effective and is often used as an adjuvant therapy following surgery and radiation therapy. * Based on this informa...

I am a 46 year old man living in Seoul, Korea. My name is Sunny Lee. My wife was diagnosed as having Glioblastoma (GBM), one of the deadliest brain tumors, in late May 2009. Doctors told me, at different times in the last two years, that she would have only a few months or a few weeks to live . Now 2 years have passed since the diagnosis and she is still alive although her condition is not as good as I want it to be. 61.1 percent of GBM patients survive for one year with the standard care that includes surgery, radiation, and chemotherapy. And only 20 percent of GBM patients survive for two years based on the standard care. This means that my wife is now in the small group of patients (12.4%) who survive more than 2 years. What’s noteworthy is that my wife failed to have a surgery due to the location of the tumor which was too deep inside the brain and only had a biopsy. She completed radiation on August 13, 2009 and chemotherapy on September 22 of the same year. She was supposed ...

Speech problem of my wife is not getting any better. Everyday she fails to say exact words to describe a thing or a situation. No sign of physical difficulties as yet. But her mind seems to be not clear. I read some bad descriptions about language problems of brain cancer patients. For example, cases where the patient finally gets to the point that she/he cannot understand what is being said by other people let alone inability to express their thoughts. It just makes me shiver to imagine such situation. I cannot get myself to work. I cannot write anything. I cannot think about the better future. I cannot make my mind calm. I cannot do anything.

In June 2010, the oncologist told me that my wife has only three weeks or so before she becomes fatally sick meaning 'dies'. Since then 4 months have elapsed. She is still with me. She is quite good. I am sure that this is mostly thanks to polymva I gave her since late June because I had to stop all conventional therapies like chemo or radiation last year due to too many fatal complications. MRI taken two weeks ago showed that her original tumor did not grow. Unfortunately, there are also some bad news. Cancer is newly advancing to upper part of the brain. She also has two new small tumors in addition to existing two ones. One of the small tumors is somewhat bigger than other ones and is affecting her language ability and short-term memory. I seem to have reaped one-third success. Stopped the original tumor from growing but failed to prevent advancement of cancer to other area and emergence of new tumors. Strangely, I am more worried than I was in June when I knew she had onl...

I am waiting for the radioactive oncologist at the hospital to hear his plan for treatment of my wife's tumor. The worst news would be that she will die soon and nothing can be done to stop it from happening. I can accept the news but I will do everything to make her live as long as she will be allowed to.

It's been a while since my wife had returned home from the hospital. For now, things are almost normal. She cooks and takes care of our kids' study also meet her friends nearby. The MRI result in December showed that her tumor neither got bigger nor shrank. I have a vague hope that it has something to do with flaxseed oil she has been eating since late November and also vegetable she eats everyday. Of course, I don't know for sure. The median survival expectancy of 11 months looms gloomily over my head and I look at her with a feeling of uneasy fear about what may happen in the coming months. I hope for miracle but I am also afraid of the future.

It has been a week since my wife came back from the hospital. She is much better than she was one month ago, right before she went to hospital for pneumonia. She doesn't cough.  I have been giving her flax seed oil mixed with soybean milk for about a week now. I hope it will make a miracle inside her body and cure her from brain cancer. I just hope... Tomorrow and the day after tomorrow, she will see doctors for diabetes, bone marrow disorder and pneumonia. I hope every test will turn out good result. 

It has been three weeks that my wife is in the hospital for pneumonia. The pneumonia that, the doctor says, was caused by anticancer drug, Temodar. She has recovered much. During first days at the hospital, her oxigen saturation figure was about 70 to 80. Now it is 95. She can walk short distance with no difficulty in breathing. She also sleeps well not interrupted by coughs. But today I had to agree to giving her bone marrow test. The doctor says her red blood cell, white blood cell, and platelet are decreasing at an alarming speed. He is thinking she might have myelodysplatic syndrome which means something wrong happened to the bone marrow's capacity to produce normal blood cells with immune functions. Internet search tells me that the disease may give her months to years to live. Tomorrow, she will have bone marrow test and I will find out the result next week. My wife was expecting to get out of the hospital today. When I told her about the test and that we will not leav...

Yesterday, I met the doctor for my wife's pneumonia. He said that he  had no idea what the kind of pneumonia was. X-ray result did not get better nor worse. Medicine he gave to my wife simply did not work. This means I have no cure for her pneumonia. At first, doctors at the hospital could not find what the cause of the disease was. Biopsy and other painful tests showed that it was not tuberculosis nor cancer transmitted from the brain cancer. But they simply did not know what it was. The final conjecture they made was pneumonia from the use of anti-cancer medicine, Temodar. And they prescribed drugs based on the assumption. Now, they are not even sure about that. My wife coughs all night long, barely sleeps and is exhausted during the day. When I had her get the brain surgery and subsequent radioactive and chemotherapy, I thought all I had to fight was brain cancer. Now I realize I was wrong. Western medicine feels like modern warfare. You pour shells and missiles to an ...

I keep listening to this song these days. Even my sons are singing it because they see me listening to the tune every night. After my wife's not very successful brain surgery that failed to remove the tumor but only served as biopsy, my wife was hospitalized for two weeks for recovery. Every night, I slept beside her. On a rainy night, while smoking a cigarette on a bench right in front of the hospital building, I remembered this song and sang it. The lyric just seemed to be written to describe my situation. Raindrops keep fallin' on my head And just like the guy whose feet are too big for his bed Nothin' seems to fit Those raindrops are fallin' on my head, they keep fallin' So I just did me some talkin' to the sun And I said I didn't like the way he got things done Sleepin' on the job Those raindrops are fallin' on my head, they keep fallin' But there's one thing I know The blues they send to meet me won't defeat me It won't be long ...

Isnt't this pathetic? After spending 43 years on this planet, I have no friend to have a drink after visiting my sick wife with pneumonia at the hospital. Among the few friends that I have, nobody has time to spend together with me. They are all busy with their normal life. I am alone at this cafe with my notebook and a bottle of beer in front of me. From an objective viewpoint, I may be one the unluckiest human beings in the world. For the last four years, I had four surgeries - two for saliva stone and two for clavicle fracture. When I finally removed stitch from the last surgery, I found that my wife had one of the worst brain tumors the very next day. That is three months ago. After that, my life has been a free fall without interruption. Anti-cancer drugs brought paralysis of right limbs, diabetes, and pneumonia to my wife. She is now in a critical condition of pneumonia with her life in danger. I said goodnight to my wife and now drinking beer in a pub. My wife's diseas...

came to ER yesterday afternoon right after the doctor at radiotherapy told us that pneumonia came back. The oncologist told me that the cause of the pneumonia seemed to be Temodar - anticancer pill- though they are not 100 percent sure. By the way, the probability for Temodar to cause pneumonia is 1 in 5,000 patients. I am not even surprised anymore by my crappy bad luck. Chemotherapy gives me nothing but disappointment and despair. A site I read today says eating Temodar only adds 2.5 months to the life expectancy of cancer patients. What a pathetic figure. Moreover, that 2.5 months will be wasted on treatment of other diseases due to the deterioration of immunity caused by Temodar which not only kills cancer cells but also while blood cells. I am seriously considering putting a definite end to chemotherapy once my wife gets out of this pneumonia. I want to give her LIFE back not a shadow of life barely managed by doctors who are only interested in using patients as their cases not a ...

Wife was hospitalized again for a pulmonary disease that doctors here cannot identify in spite of several tests. She will go through tissue test tomorrow evening. Ironically, she is getting worse than before coming to the hospital due to unsucessful tests. Not knowing how long she has to live as MRI is on September 11, I really want to avoid tests for her. But doctors fail to make life easier for me and my wife. Staying in the hospital from this Tuesday, I read Dawkin's God Delusion. The message of the book is gloomy but truthful. There is no God in the heaven that will hear a prayer made by one person in this planet among the vast universe. I only believe in chance. Prayers, tears, crying out loud to the sky will not save my wife. Only probability, chance, and factors beyond my understanding will make a miracle. In a word, a great lottery of life will save her. I pray to the God of chance.

When I found out my wife had a brain cancer, I never thought that I would ever listen to classical music or do other things that gave me pleasure. Two months have passed. And now I am listening to Bach's cantata. I know that the disease still lurks in my wife's head and that I may not have a long time to spend with my wife. But the ordinary has bigger power than the disease. I feel sometimes as if nothing serious happened with my life. Of course, that is just a feeling not reality. Anyway, Bach is good to my ears and soothes my soul.

What I realize every single day since my wife fell ill is that a disease not only kills the patient alone but the whole family members and relations among them on a mental level. My wife who used to be mild and easy-going is not like that anymore. She is easily irritated about small things and throw unkind remarks to me more often than before. It hurts me and makes me mad, but I know that she cannot help it. It's the disease inside her, not her own self. My kids cannot have dinner with me and my wife anymore as I have to take her every weekday night to the hospital for radioactive therapy. A kind neighbor takes care of my kid for dinner. A decent dinner where me and my wife used to have with kids seems like a history. Relationship among parents and children is also being slowly damaged. As I am tired almost all the time, I get mad towards kids for small disobedience that I used to neglect before my wife got ill. Also my wife does the same. Kids are getting perplexed about change...

Needless to say, I am talking about myself. For the last two years, I had four surgery. Two for saliva stone in the neck. Two for broken collarbone. Right after removing a pin from my collarbone on 24 May 2009, I had about 12 hours of relief that I never experienced for the last two years. On the next day, my wife had a MRI scan and we found out she had a brain tumor with size of 5 centimeter. Since then, my life is getting worse and worse everyday. Or should I say getting crazier everyday.

A few days ago, my wife could not use her right leg. After taking pills to lower intracranial pressure, she was able to move the leg a little again from yesterday. But her ability to link her thought to words is getting worse everyday. I do not know what kind of symptoms are waiting for us in coming days. This is very unpleasant and demoralizing feeling.

I start this blog to reduce my stress that seems to grow and grow everyday due to the horrible disease glioblastoma that attacked my wife in May 2009. My life has totally changed since I found about my wife's disease. The ordinary daily routine that I took for granted and never considered as important is now lost. Coming home, having dinner with wife and kids, drinking honey tea made by wife while browsing the Internet and listening to Mozart, and other small things. They are now completely gone. Instead, what I have is always checking up my wife's state which is getting worse everyday, managing two sons' education schedule, taking wife to the hospital every night for radioactive therapy and other tedious chores. In short, I decided to blog to remain sane and restore even the tiny part of normal life by writing about things I had, things I lost, and things that may happen to the future of me and my wife.