Today, on January 27th, 2012, as I had expected, the doctors told our family that my mother is not in a state to take chemotherapy anymore. Prognosis is bad - two to three months, at most. I am in San Diego, over 8,000 miles away and am feeling as helpless as my father and sister back home. There is nothing we can do but watch my mom gradually fade away.
My mom has been sick since October 2011, rather that was the first time we got any inkling about her sickness. I was there with her when she had an episode of severe pain in her abdomen. We had her treated with some antibiotics and gastric medicines at that time. Since then she has had quite a few problems and has been in and out of hospitals from October - December. During these three months, the doctors suspected and were treating her for liver abscess and had not investigated cancer as a possibility until early December. During the month of December, several investigations (scans, biopsy, immunohistochem, etc.) took place culminating in the final diagnosis of Stage IV Cancer of Unknown Primary (CUP / occult primary). The PET scan showed that she has a huge tumor in her liver (about 1/3 of her liver) and several small lesions in both lobes, an impacted lymph node in her abdomen, multiple small lesions in the lungs, some liquid in the lungs, and a small tumor in the bone of her right arm near her elbow. These were all suspected to be secondary tumors metastasized from somewhere else. But no primary tumor could be found and all tests lead to dead ends. With no primary, there was no directed treatment available. Further investigations seemed academic at this point and after three long months in the hospitals and so many tests, there was no point to put her through more tests. She was frail, with massive weight loss and lacked the strength to stand up. She was not in a physical state to take intravenous cocktail of chemotherapy drugs. So on January 6th, the doctors prescribed Xeloda, an oral chemotherapy drug. We hoped that this drug would give her some quality of life, and may be some quantity as well. Doctors said that there was 30% chance of this drug working for patients like my mother. A cycle is for 21 days, 14 days with medicines (1000 mg, twice a day) followed by seven days off. After three such cycles, we were to scan her and see if the tumor burden had reduced and then plan further treatment. They also cautioned us that prognosis for patients with occult primary was not good, 50% lived past one year.
After the first cycle, her functional health is so deteriorated that we can no longer continue with the medicine. She sleeps all day, and is restless all night. She can hardly get up to go to the bathroom, but she insists that she does. We are so scared that she will fall down and break her bones. She has lost her appetite and does not like to eat at all. When she does, she has to be spoon fed and food drools out of her mouth. It is very sad to watch her diminished to this level. Her stomach is bloated and legs are swollen, and we think she is slowly heading towards liver failure. She suffers from chronic constipation. She has a small boil on her shoulder due to a hot water pack, but she does not seem to sense it at all. At night, when she is restless, we massage her back, arms, and legs and give her the hot water pack for comfort. She sits upright for an hour, and then lies down for a bit. This cycle goes on all night. Fortunately, she is not in much pain. We do not think her restlessness at night has got to do with pain, it must be something else that is causing it. Even sleeping pills don't seem to comfort her at night. However, she sleeps all day and is in a daze. She has lost cognition for the most part of the day. On a good day she is in a state to react with the world for about 30 minutes to an hour at most. Usually the things she talks about do not make sense anymore, she is disconnected from reality. Her temper flares up from time to time and she does not want to deal with my dad or my sister anymore. They feel hurt. She only talks to her siblings and a few other family friends who visit her.
My sister and my father are miserable. My sister's sister-in-law is getting married in a month's time and her family is going through the motions of preparing for the wedding. While my sister participates in all the festivities, there is a heaviness in her heart. She feels guilty not being able to be totally engrossed with the wedding as is expected of her. It's very hard for her. Her little six year old daughter has many questions of her own - When will Diya get well again and escort me home from school? How does one explain death to a little child? My father has his own battles to fight. For the longest time he was in denial but now it is slowly sinking in and it is very painful for him. He is going through the five stages of grief. He is also scared of the prospect of being all alone for the rest of his life. My mom had been his support and safety net for 40 years, he can't imagine life without her. He told me last night that he hates it when people come up to him and say that they are sorry and that mother is too young to die. He wishes the world to stop talking - Can't they just be quiet?! May be they should just hold his hand or give him a hug. January 30th is their wedding anniversary, it will be very difficult for him.
I spent five weeks in India since mid December, running pillar to post trying my best to secure the best medical care I could find for her, getting the home organized and equipped for mother's long illness, and also help my father sort out the finances. I returned to San Diego last weekend as I had to take care of my business and affairs here. It has been a tumultuous time for me, and I have no idea what the future will look like. When will I get the fateful phone call and have to catch the next flight back? I may never see her again. And the brief conversations on the phone with her these days do not make any sense since she has lost her comprehension of the world.
What do I regret? I have two.
We were not able to save her. She is just 60 years old, its not her time. If this was 20 - 25 years later, I could have better borne this situation. It's too hard to see her reduced to this state. For those who have seen my mother know where I got my active genes. She can't sit still for a moment, always doing something or the other. She never complained of any major sickness all her life and had been in fact blessed with a relatively sickness-free life. Last January, when she was visiting us here in San Diego, she taught a Soma's Kitchen Cooking Class with me. She is the best cook out there and I hope I got some of her cooking genes. On a trip to Joshua Tree National Park last January, she climbed up the rocks like a little monkey! That was my mom, always up for an adventure. Lat year during this very weekend, my parents and I were touring San Francisco! All the rigorous treatment regimes since October has taken a toll on her body, she can barely sit up and has left her incapable of absorbing any drugs. What can we do? I can't get rid of that helpless sinking feeling in my heart that I was not able to save her. But then, I look around the world, with all the bomb blasts, wars, accidents happening and so many people losing their lives. People are losing their loved ones everyday. My grief is as much as theirs, it cannot possibly be more. Those young children in the pediatric oncology wards battling the disease and sometimes losing the battle even before their life has begun. Compared to those kids, my mom had a life, and 60 full years of it. Whether it was good or bad, successful or not, happy or sad, she is the only one who can analyse and answer. We cannot judge her life. She had her own trials, her own challenges, and her own sweet moments to cherish. For us, her family, we feel that she did have a significant life. I have been thinking about life a lot lately. What is a good life? How should we define a full life? What makes it complete? What achievement is good enough so that when one closes one's eyes on the last day on earth, one can say to oneself that they 'made it'?
I was not able to say Goodbye. Yes, even though I was there with her for five weeks, I was not able to say farewell. When her diagnosis got finalized over the New Year, everyone (except me) decided that she should not be told about the gravity of her disease and its terminal nature. The fear was that she will lose the 'will to live' should she 'find out' that there is little hope. All my protests were drowned by comments like "In India, we do not do this, we do not tell people that they are dying. Keep your American ways and ideas to yourself." I did not have the strength to fight them then, but it hurt me very much. If I were to face this situation, I would want to know. I would appreciate having the time to prepare to meet my end and make peace with it. Last January, I came very close to dying and know what it feels like in those last moments when you think it is 'The End'. I was fortunate to be able to come out unscathed from that accident. So, I do appreciate every moment I have on this planet. And so when I was in India, I ached for the opportunity to put my arms around my mother and cry with her, talk to her about our life together, thank her for all she had done for me, and may be even bring out the few grievances I harbor only to ease them forever. May be she had something to tell me too, I will never know. I never got the chance to talk to her. All I did was give her false hopes that someday she will be all right and will sit under the San Diego sun, watch Ozzie and Freo run around in our backyard. Some of my friends who have lost a parent due to a sudden event have shared with me their anguish for not having the opportunity to say goodbye. I feel for them, I understand. My mother's condition is too far gone now and she has lost comprehension. Even if I try to hold this conversation now, it will not work. I have lost my chance to say goodbye too.
As for Hope, I guess it is always there, even when we feel that we have been beaten to the ground. Life sprouts out from a crack in concrete, the force of life is strong all around us. Many have pointed out to me and still do - Miracles have happened, why not with her? Why lose hope until the last breath? On the other hand, we have to be realistic. Death is as sure to come as the sun will rise tomorrow - for all of us. We can only hold it at bay for a bit and given how my mom looks and feels right now, I don't think the chance for a miracle is too high. No, I am not a pessimist, I do not want my mother to die. I am a realist, and I accept the situation for what it is. Also, someone in the family has to be the strong one and that has to be me. It is expected of me.
My mom has been sick since October 2011, rather that was the first time we got any inkling about her sickness. I was there with her when she had an episode of severe pain in her abdomen. We had her treated with some antibiotics and gastric medicines at that time. Since then she has had quite a few problems and has been in and out of hospitals from October - December. During these three months, the doctors suspected and were treating her for liver abscess and had not investigated cancer as a possibility until early December. During the month of December, several investigations (scans, biopsy, immunohistochem, etc.) took place culminating in the final diagnosis of Stage IV Cancer of Unknown Primary (CUP / occult primary). The PET scan showed that she has a huge tumor in her liver (about 1/3 of her liver) and several small lesions in both lobes, an impacted lymph node in her abdomen, multiple small lesions in the lungs, some liquid in the lungs, and a small tumor in the bone of her right arm near her elbow. These were all suspected to be secondary tumors metastasized from somewhere else. But no primary tumor could be found and all tests lead to dead ends. With no primary, there was no directed treatment available. Further investigations seemed academic at this point and after three long months in the hospitals and so many tests, there was no point to put her through more tests. She was frail, with massive weight loss and lacked the strength to stand up. She was not in a physical state to take intravenous cocktail of chemotherapy drugs. So on January 6th, the doctors prescribed Xeloda, an oral chemotherapy drug. We hoped that this drug would give her some quality of life, and may be some quantity as well. Doctors said that there was 30% chance of this drug working for patients like my mother. A cycle is for 21 days, 14 days with medicines (1000 mg, twice a day) followed by seven days off. After three such cycles, we were to scan her and see if the tumor burden had reduced and then plan further treatment. They also cautioned us that prognosis for patients with occult primary was not good, 50% lived past one year.
After the first cycle, her functional health is so deteriorated that we can no longer continue with the medicine. She sleeps all day, and is restless all night. She can hardly get up to go to the bathroom, but she insists that she does. We are so scared that she will fall down and break her bones. She has lost her appetite and does not like to eat at all. When she does, she has to be spoon fed and food drools out of her mouth. It is very sad to watch her diminished to this level. Her stomach is bloated and legs are swollen, and we think she is slowly heading towards liver failure. She suffers from chronic constipation. She has a small boil on her shoulder due to a hot water pack, but she does not seem to sense it at all. At night, when she is restless, we massage her back, arms, and legs and give her the hot water pack for comfort. She sits upright for an hour, and then lies down for a bit. This cycle goes on all night. Fortunately, she is not in much pain. We do not think her restlessness at night has got to do with pain, it must be something else that is causing it. Even sleeping pills don't seem to comfort her at night. However, she sleeps all day and is in a daze. She has lost cognition for the most part of the day. On a good day she is in a state to react with the world for about 30 minutes to an hour at most. Usually the things she talks about do not make sense anymore, she is disconnected from reality. Her temper flares up from time to time and she does not want to deal with my dad or my sister anymore. They feel hurt. She only talks to her siblings and a few other family friends who visit her.
My sister and my father are miserable. My sister's sister-in-law is getting married in a month's time and her family is going through the motions of preparing for the wedding. While my sister participates in all the festivities, there is a heaviness in her heart. She feels guilty not being able to be totally engrossed with the wedding as is expected of her. It's very hard for her. Her little six year old daughter has many questions of her own - When will Diya get well again and escort me home from school? How does one explain death to a little child? My father has his own battles to fight. For the longest time he was in denial but now it is slowly sinking in and it is very painful for him. He is going through the five stages of grief. He is also scared of the prospect of being all alone for the rest of his life. My mom had been his support and safety net for 40 years, he can't imagine life without her. He told me last night that he hates it when people come up to him and say that they are sorry and that mother is too young to die. He wishes the world to stop talking - Can't they just be quiet?! May be they should just hold his hand or give him a hug. January 30th is their wedding anniversary, it will be very difficult for him.
I spent five weeks in India since mid December, running pillar to post trying my best to secure the best medical care I could find for her, getting the home organized and equipped for mother's long illness, and also help my father sort out the finances. I returned to San Diego last weekend as I had to take care of my business and affairs here. It has been a tumultuous time for me, and I have no idea what the future will look like. When will I get the fateful phone call and have to catch the next flight back? I may never see her again. And the brief conversations on the phone with her these days do not make any sense since she has lost her comprehension of the world.
What do I regret? I have two.
We were not able to save her. She is just 60 years old, its not her time. If this was 20 - 25 years later, I could have better borne this situation. It's too hard to see her reduced to this state. For those who have seen my mother know where I got my active genes. She can't sit still for a moment, always doing something or the other. She never complained of any major sickness all her life and had been in fact blessed with a relatively sickness-free life. Last January, when she was visiting us here in San Diego, she taught a Soma's Kitchen Cooking Class with me. She is the best cook out there and I hope I got some of her cooking genes. On a trip to Joshua Tree National Park last January, she climbed up the rocks like a little monkey! That was my mom, always up for an adventure. Lat year during this very weekend, my parents and I were touring San Francisco! All the rigorous treatment regimes since October has taken a toll on her body, she can barely sit up and has left her incapable of absorbing any drugs. What can we do? I can't get rid of that helpless sinking feeling in my heart that I was not able to save her. But then, I look around the world, with all the bomb blasts, wars, accidents happening and so many people losing their lives. People are losing their loved ones everyday. My grief is as much as theirs, it cannot possibly be more. Those young children in the pediatric oncology wards battling the disease and sometimes losing the battle even before their life has begun. Compared to those kids, my mom had a life, and 60 full years of it. Whether it was good or bad, successful or not, happy or sad, she is the only one who can analyse and answer. We cannot judge her life. She had her own trials, her own challenges, and her own sweet moments to cherish. For us, her family, we feel that she did have a significant life. I have been thinking about life a lot lately. What is a good life? How should we define a full life? What makes it complete? What achievement is good enough so that when one closes one's eyes on the last day on earth, one can say to oneself that they 'made it'?
I was not able to say Goodbye. Yes, even though I was there with her for five weeks, I was not able to say farewell. When her diagnosis got finalized over the New Year, everyone (except me) decided that she should not be told about the gravity of her disease and its terminal nature. The fear was that she will lose the 'will to live' should she 'find out' that there is little hope. All my protests were drowned by comments like "In India, we do not do this, we do not tell people that they are dying. Keep your American ways and ideas to yourself." I did not have the strength to fight them then, but it hurt me very much. If I were to face this situation, I would want to know. I would appreciate having the time to prepare to meet my end and make peace with it. Last January, I came very close to dying and know what it feels like in those last moments when you think it is 'The End'. I was fortunate to be able to come out unscathed from that accident. So, I do appreciate every moment I have on this planet. And so when I was in India, I ached for the opportunity to put my arms around my mother and cry with her, talk to her about our life together, thank her for all she had done for me, and may be even bring out the few grievances I harbor only to ease them forever. May be she had something to tell me too, I will never know. I never got the chance to talk to her. All I did was give her false hopes that someday she will be all right and will sit under the San Diego sun, watch Ozzie and Freo run around in our backyard. Some of my friends who have lost a parent due to a sudden event have shared with me their anguish for not having the opportunity to say goodbye. I feel for them, I understand. My mother's condition is too far gone now and she has lost comprehension. Even if I try to hold this conversation now, it will not work. I have lost my chance to say goodbye too.
As for Hope, I guess it is always there, even when we feel that we have been beaten to the ground. Life sprouts out from a crack in concrete, the force of life is strong all around us. Many have pointed out to me and still do - Miracles have happened, why not with her? Why lose hope until the last breath? On the other hand, we have to be realistic. Death is as sure to come as the sun will rise tomorrow - for all of us. We can only hold it at bay for a bit and given how my mom looks and feels right now, I don't think the chance for a miracle is too high. No, I am not a pessimist, I do not want my mother to die. I am a realist, and I accept the situation for what it is. Also, someone in the family has to be the strong one and that has to be me. It is expected of me.
Maa has been a good soul. She has innumerable friends and well wishers. She has always been there for her friends in good times and bad, and no one seems to bear ill-will towards her. The stream of visitors coming to see her everyday was heartwarming for me. I can feel the love and compassion flowing through the house and it felt great to see my mom loved so much. My friends around the world are also wishing and praying for my mother. May be all this metta will bring about some relief to her. Add to that the fact that my mom has been a very religious lady, there is not one festival when she did not fast and offer her sincere prayers. I think there is not one god out there who did not get his/her due from mom. I do not believe in god, but if there is someone and my mom's reverence was strong enough, I hope her god will grant her some peace.
Goodbye, Mom!
Goodbye, Mom!
My wife and I were looking through photographs people had shared on Facebook last night. She noticed the link to your blogpost and although she has never met you in person she felt a connect. She didn’t read it, as it brings back her own memories, but I did.
ReplyDeleteI was perhaps better braced, having just read Joan Didion’s melancholic book, The Year of Magical Thinking which bluntly deals with similar emotions. Some say these thoughts need to be penned as catharsis: I disagree. This is no catharsis for those in throes of this ultimate melancholy. The words simply come.
Last year one week after I returned from India, my boromama who I had talked on the telephone (but had not taken a half-day to visit), suddenly suffered a massive heart-attack from which he did not recover. I played the last conversation in my head over and over again. Two weeks later an aunt who had been chronically suffering from cancer also passed away: her illness was slow and debilitating and painful to watch. I had all the time in the world to say goodbye to her, but couldn't do even with the opportunity.
Of course this pales in comparison to the situation which arises when one’s own parent is ill. I remember the phone ringing, waking my wife up in the middle of the night, and not being able to say a word. I wanted to say “he is in a better place” but couldn’t get myself to say those words to her or become a believer at that moment.
It made us very angry when people said, “no one’s parents lives forever.” For the longest time, old people made my wife upset. It wasn’t that she wished them ill. It just made her think of her own father who was 62 at the time.
I will be honest. It was easy for me to be brave and be strong. I only had to be there even though it bothered me to no end that I couldn’t “fix” the situation. It is always much easier for everyone else.
I know you will have similar support: From the bottom of our heart, we wish you peace and strength as you face these adversities.