December 2, 2012
At least for once wanting to do something crazy …………. like skydiving, bungee jumping (even though I have acrophobia)! Or driving a racing car! Deepto asked not to do these even though it sound like fun. I said that he can’t do it, I am talking about myself. He said, “Don’t be selfish. You are not allowing me to do it when I will be an adult but you are talking doing it by yourself!” I told him, “For once I want to be selfish. Always I think about others first.” At least for once I want to do something without thinking about others ……….. I can travel many places ………… I can tell my surgeon, “No, I am not having surgery anymore” ……….. I can stop seeing oncologist, surgeon, doctors ………….. I can just read books ……….. just listen to music …………. But I can’t do so many things …………………… A cancer fighter can’t count his/her age …………… (s)he has to count his/her children’s age!
January 25, 2013
After a long time watched Grey’s anatomy. Used to watch E.R. regularly. If ignore the romance part, many things could be learnt from these shows especially who doesn’t have medical science background. Sometimes these shows become too dramatic, otherwise people wouldn’t watch. But life itself bigger than fiction!
Today met my surgeon and fixed the surgery date. He said himself, “next Thursday is too early.” I told him earlier that Deepto’s birthday is on next week. The week after surgeon has vacation. So had to agree on twenty-first of February! The International Mother Language day! (This day became after the language movement of Bangladesh in 1952. The movement happened when the then West Pakistan Government declared that only Urdu should be the official language of Pakistan (West and East Pakistan, later East became Bangladesh in 1971, after a bloody Liberation War). My surgeon’s surgery day is on Thursday, that’s why. since one of the spot grew bigger in the last two and half months he doesn’t want to wait anymore. Neither do I. Deepto and Mizan are asking me again and again, actually they are asking themselves, whether I am ready for the surgery again! They still remember the agony I went through just over a year ago for the last surgery! I told Deepto that when someone has no option rather than taking the difficult decision, has to deal with it with courage. Life is not just a journey, it’s a personal journey indeed. If someone’s life becomes upside down or standstill, even then nothing stops! And the stunned person has to function “normal”. Because life doesn’t give that person a break too! One of my close friends, who has another type of fight to fight, asks me: where do I get this strength? Another close friend when came to know about the surgery (who watched my sufferings very closely before) asked me how do I still laugh? I was laughing for something else after I told her the surgery date. Strength comes when thinking, feeling of others pain!
March 4, 2013
21st February before the sunrise, repetition of fifteen months ago ………….. said bye to Deepto, Mizan, Udoy, Aman and went to the OT. Little different this time, surgery is not two but on one lung. After several hours (four hours surgery, hours on ventilator) opened eyes. (Last time the surgery was for eight hours, stayed on ventilator for more hours) ………… Thin leaned nurse James trying to control pain. This time asked the pain management team not to give narcotics. Don’t want the same horrible experience of last time. Generally doctors tell patients, “Sorry don’t have many options to help you.” In my case it’s the opposite. I say doctors, “Sorry you have few options to help me.” (Allergic to main pain medications, others make me more sick). This time it was decided that I would take epidural until the drainage tubes are taken out.
Once James asked, “Are you religious?” I said no. Wondered why did he ask? Later thought that it may help nurses if they have some idea of patients. Specially at I.C.U. …………. Sitting on a small chair and put feet another small one Udoy (he is a tall guy) stayed three nights in a row! This time I was kept in cardiac I.C.U. Deepto doesn’t want to stay at home without his dad at night. During the day time Mizan and Deepto or Aman stayed alternatively. Even among this, asked Udoy and Aman if people are still in Shahbag or not?
Blood pressure is dropping ………… dropping … 40/40+! James asked, “Do you have objection to take blood?” (I think for religious reason some people don’t want it). I said no. Those who donated three bags of blood, I thanked them in my mind. First ever to get blood. This time lost a lot of blood. Also always anemic. Like James, Anshu is another nurse. Will remember both of them. James was there for two nights. Before he left said, “Hope this time you will get better fully. You are still young, understand it?” (He was younger than me). Introduced four guys (whoever was staying at the time) to Anshu and smiled and said, “All are guys. All of my doctors (except one) are men too.” He joked and said, “Nurses are male too!” People say my brothers, brother-in-law and of course husband do such a great job helping me during and after surgery that many sisters wouldn’t be able to do that! I don’t have any sister.
After staying in ICU for four days, went to room. Seeing some known faces (of nurses) of the last time. Favorite Lotti, Angie and others………….. The person I never wanted to meet again as my nurse, that Daniela was there at the very first night! Last time a nurse gave me wrong injection without checking my chart and it was so painful …………. felt like I was having heart attack. Came to know that medical professionals are so afraid of suing in this country that while I was in such pain and asking for a doctor desperately but nobody was even coming closer to me! All were looking through the window! I was screaming for help and they were standing there! The nurse who was at fault was there and after a while her superior (Daniela) came. Daniela not only tried to deny the fact but also said bad things about me (If I was a mentally unstable person or not). My brother heard it.
Later saw her very bad behavior with other nurses. The wrongs were done (so many times and by several nurses) to me was told to my surgeon and higher officials by me. They came to me and I told them what happened for the last eight days (my surgeon was off duty for several days’ right after my surgery day. It was the biggest mistake I have ever made. Shouldn’t have the surgery right before my surgeon’s off duty days) without telling the names. I knew they would be fired that’s why. So many people told me that I could sue if I wanted. I know that. I just smile. I don’t want any revenge on anybody. Else I would have sued my then PCP. I showed her the tiny lump on my leg and she ignored it. She never told me to keep an eye on it. She said it’s just a fat tissue. And I waited almost a year. When it started growing rapidly I wanted to see her. She wasn’t there. I saw her group partner. He asked me to see a surgeon (luckily he referred me to the right one) without any concern too. The surgeon got suspicious at the very first moment even though his group partner had no concern. He even made a bet of a beer with my surgeon…………… Had the surgery (leg surgeon was different one then the lungs surgeon of course!), it was soft tissue sarcoma………… Then had radiation for seven weeks, five days a week. ……….regular CT scan, M.R.I……………… The spots on lungs …………. numbers were increasing ………………. after four years the sizes were increased………….. So tiny that needle biopsy wasn’t possible …………… after one year they grew again………….. Surgeon said can’t wait any longer ………… had the surgery on both lungs at the same time which is very rare………….. Suffered so much during the recovery ………. after two months another two spots were seen …………… kept an eye on those (regular CT scan) ………… after a year those grew again ……………. had the surgery again (on right lungs this time) ………… nothing would have happened “If” my then PCP had paid attention and did the right thing! A tiny bit of negligence of doctors can destroy patient’s and their families’ life forever!
When Daniela came as a nurse for me this time I was thinking, “How much do I have to take or see?” Wow! At the very first moment she started addressing me, “honey,” “sweetie,” “darling,” and such a care! Udoy said certainly she had to go through trainings (after my previous surgery). Last time I didn’t tell her name (not anybody’s name) but the officials must have identified her and others. I wanted this. I didn’t want anyone to lose job. I wanted her to learn to treat people better, nice behavior. It worked.
One day I saw some signs and mentioned to the doctors and they became worried. These could happen before or during brain stroke, sometimes as a side effect of some medications. CT scan of head was done. Nothing came out. Now MRI. At midnight when I was taken for MRI, Udoy told me that Saidee (one of the notorious rajakar) got death penalty. I didn’t smile or cry. Saying in my mind, “Every rajakar (war criminals) must be brought to justice.”………………….. It was forty five minutes long MRI. I think I was falling to sleep on and off…………..I think it was the medication ………………… or I got used to these so much! This time among four spots (two were seen on CT scan, others weren’t) two are positive for sarcoma. In almost six years three times biopsy came positive! …………… Rest of the story later, maybe.
March 14, 2013
Came down stairs, went outside after almost two weeks. Had appointment with surgeon. Just before my wheel chair went through elevators, doors started to close………….. People inside seemed like didn’t see! Unintentionally words came out from my mouth, “How rude people can be. Oh, my God!” Don’t say the second sentence usually (in rare cases said it), why did I say it today, don’t know. Saw a woman standing beside me, smiled and showed surprised face like me! After that her and others very good attitude assured me that in that elevator (that left) there were some inhumane people looked like humans!
In life those who are very gentle human beings, my husband and my surgeon are among them. My surgeon thinks us (Mizan and I) are his siblings! He is South Indian. Lost his father at eighteen. His sister was thirteen then. When he finished medical school at Vellore, India lost his mom. Aunt brought him and his sister in London. After that he came to U.S. Sister stayed there. When he was living and working in New York got connected with his classmate from Vellore. Then got married. His mother-in-law is Scottish, doctor, went to work with missionaries in Kashmir, India. Met a man from Tibet. Got married. Surgeon’s own mother was brought up in Burma (Myanmar). After listening these, I told him, totally a global family. His sister is very free-spirited person. Didn’t get married. Which worries him a bit.
When this was brought up, I told him, “Let her live what she wants. Let her be happy.” This time when he brought the biopsy result, one of my brothers was with me that time. Last time was another brother. When we were talking he came to know that my that brother didn’t get married like his sister, I told him that they are younger than us by five years but a bit different from us. When the talk about his sister came, I told him that, through my whole life what I believed became (are becoming) stronger while I started fighting against cancer. The thought is, let people live the way that make them happy unless it hurts anyone.
Three of us (surgeon, my brother and I) spent some time talking about life. When talk about Deepto came, he said, “He will be OK.” Seemed like he assured me from his own experience! Told him about the loss of Mizan’s dad. ……….. At a point while talking about Deepto seemed like his eyes became watery! …………… Today while talking about Deepto, said I talk to so many people, kind of give counseling to so many people and my own son is in such a sorrow! ………He put his hand on my back and said, “He will be OK.”………………… Wish he will be OK. His eyes were watery today too. Those spots didn’t show up in CT scan, he found it by touching, feeling by hands and removed it! How many do surgery with such compassion! Mizan and I only could say, “Thank you very much.”
Wish these exceptional human beings could do such great jobs for long time, stay healthy, be happy, and live a long life! He and Mizan are the same age. These two’s way of talking, attitude, even the style of dressing are so similar that Aman (Mizan’s youngest brother) said, “It seems like you two are brothers!” Amazing human being!