<p>sorry that I did not post more frequently, and thank you so much for your kind words and thoughts.</p>
<p>Last two weeks, I had a lot to sort through… </p>
<p>the last time you heard from me, I shared with you that the cancer antigen blood marker went up drastically at the end of the second cycle of the new regimen I was put on after the surgery in August. This was the protocol that I had very high hopes for, and was very disappointed with the test results. I was planning on getting the CT scan and retaking the blood tests to see really what was going on.</p>
<p>That was close to two weeks. Last Saturday (Nov 24), I got a new CT scan. By Monday (Nov 26), I was ordered to go to the emergency care center to get additional tests done since they found on the CT scan what might be blood clots, and if they were indeed blood clots, I need emergency treatment right away since the condition may develop into a life threatening affair. Luckily, it was a false alarm. </p>
<p>However, the good news ended right there. When I went to see Dr. S. on Tuesday (Nov 27) to get the full picture of whats going on, not only the scan showed that cancer grew, more alarmingly on a short term basis, they also found significant pleural effusion (fluid accumulation in the chest cavity). The scan image showed that my lungs were squeezed into half the size due to the room that the fluid took up in the chest cavity. No wonder that I was so short on breath recently I couldnt finish a sentence without taking a break to breathe but I thought it was due to the chemo side effects. The consultation with Dr. S. took place close to 7 PM, and he sent me straight to the main MSK hospital to be admitted overnight for the next day emergency fluid drain. When they performed the procedure the next day, 2 litters of fluid came out, and that was not even all there was to it: they dont drain more than 1 litter from each lung at a time. The next day another 650 cc came out. I cant believe I was walking around with that much fluid. As a reference point, a large family sized coke bottle is only 1.8 litters. As a result of the procedure, now I have two catheters sticking out: one from each lung. I will be draining at home now every two to three days. My pleural effusion is caused by cancer. As such, both my ileostomy condition and pleural effusion will be there indefinitely as long as we dont find a cancer treatment protocol that works. </p>
<p>Last two weeks were not easy on me, and I have to say for the first time since this whole journey started exactly two years ago, I felt despair over my prospect. Whichever way I look at it, where I am now is not good place to be at all. As I go down the list of chemo drugs, the odds of them working also go down. By now, I am starting to look at more exotic class of drugs since I am starting to run out of drugs that are used frequently because they have higher odds of working. I started to wonder — am I near the point where I have to think about nuclear options? Should I now start thinking about quality of life issues over the quantity? Should I go for a palliative chemo option rather than an aggressive regimen that might increase the life span at the risk of compromised quality of life? This was not an idle question. If I were to pick a random oncologist off the street and present my case, most of them may consider my case rather hopeless. In fact, a friend who passed away this summer once told me in the spring that she felt her oncologist gave up on her, and she did not even go through as many failed treatment protocols as I have. </p>
<p>However, in the end, Dr. S. and I picked a regimen for the best therapeutic potential. I am not willing to go soft yet. There are several reasons for that. Its not due to fear of death. I am not afraid of dying. Rather, my motivation is, I want to hang around a bit longer with my family. During the Thanksgiving weekend, we had both of our sons with us at home. They were so attentive and caring both of them thanking us for having raised them so well and wishing to see us have similar effects on their future children. I want to be there to see their college graduation, and may be even their marriage. If I am really lucky, perhaps I will get to see the grandkids. I want to see that my husband successfully recover from his lung transplant surgery and regain his strength. If I catch a break, and find myself in a stable condition for a while, I would like to travel with him to couple of exciting locations. </p>
<p>The second reason is my incredibly kind and caring friends - including all of you on CC. They are doing everything they can to make sure that we get the support we need when both of are dealing with life threatening health issues. They traveled several hours to our home so that they could take my husband or me to Philadelphia (for lung transplant registry for my husband) and NYC (for MSKCC for me). They flew across the Pacific and the Atlantic to spend a few days with us. The love, dedication, and generosity on their part, I would never know how we could have ever earned. The least I can do is to do my part and not give up prematurely. Thats the only way I can repay their unconditional love.</p>
<p>The last, but not least, reason is Dr. S. His optimism, not the flashy & ostentatious type, but a calm and reassuring variety, gave me hope. He is not just a clinician. He is also a top notch researcher who is aware of all the development happening at the bleeding edge. He said, we will try this and that. If they dont work, we can put on a trial that starts within next 6 weeks or so that looks promising for someone in your condition. I feel enormously fortunate to have him as my doctor. I am naturally an upbeat person, but last several months since the beginning of the summer, there were times when my reserve of optimism hit the low point, and during this period, his optimism carried me forward. How lucky I am that I can ride on his back when my own engine is sputtering This perfect patient - doctor relationship is not to be taken for granted.</p>
<p>Two days ago this Friday, I started on a new regimen. Who knows whether this treatment is going to work or not. I dont know how my story will end. For that matter, nobody knows how their own story will end. Seemingly perfectly healthy people can have a fatal heart attack. During last two weeks, there was a time when I got weak, and wished that were my case that if I had to go, it would have been better if the end came suddenly so that I wouldnt suffer all this in between. However, that moment lasted only a nanosecond. During last two years, I experienced a whole new development on my part: the part that I did not know that I had. I became a much better rounded person. I had so many opportunities of experiencing the kind of love I did not know I had in me and I did not know my friends had toward me. With ample time to think about myself, my family and all that I have, I had an opportunity to communicate deeply, passionately, and honestly. My kids learned my inner most thoughts and emotions. They learned to appreciate me not just as a mother to teenagers but as a fully grown human being in short, they got to know me as a whole person. Why in the world would I give up this wonderful experience just so that I can save myself anxiety and, occasional pain, from the time I got my warning and the eventual outcome? I am a very fortunate person to have this opportunity to explore all aspects of my life before I am taken away suddenly!</p>
<p>The more dire my situation becomes, the more acutely I am aware how incredibly fortunate I am. It may sound paradoxical, but there is a very rational reason for it. The more my condition deteriorates, the more pronounced the marginal benefit of all that I was fortunate enough to have becomes. As my condition worsens, how much more precarious my situation would become without the kind of human, financial, social, and all sorts of other resources that I have!!! So, indeed, I am a very fortunate person!</p>
<p>Now, I will have to wait 6-8 weeks to see if this new treatment seems to working or not. I am such a foolish optimist - even in the face of repeated failure, I am hopeful again. After two weeks spent in a dark place, I am finally clawing my way back up from the pits! I move forward one day at a time </p>
<p>As I mentioned in my last post, no matter how far I go, the view from where I manged to climb so far is already spectacular. Even if I fail to scale the peak, I am satisfied that I already got the reward I was looking for. I have no regrets.</p>