Just get me there.
March 1, 2014
Life and death decisions are easy. They are binary. So when the doctor’s tell me I have to do chemo, I reluctantly do it or I die. That’s the way I see things. Of course, others may choose to let go because they do not have something or someone to live for.
There are decisions that are hard because they are personal. Sending my mother home back to the Philippines is one of those hard decisions. She left two weeks ago and the house is not the same: It is quiet. I sent her home because, if anything happens to me, I don’t want her to see the end. I know about mother’s instinct and all that, but I will be helpless to protect her. It is much easier to carry on not worrying about her when the day comes.
I only want good memories for her to remember me. I have plenty to keep me going, more than enough to get me to the next stage: The clinical trials (non-FDA approved drugs or experimental).
I am looking forward to my next appointment at University of Chicago Medicine. The results of my genetic testing from Foundation Medicine are out and it identified one gene called RET that can unlock my cancer mystery. The report also listed trial drugs that maybe appropriate for me. All this is foreign to me, but my doctors are excited. So if they tell me I have to do this and that, that is easy. Just get me to the starting line and I will figure out how I will finish.
At the finish line, I know who will be there: You, my family and of course, mom. It will be a sweet moment I look forward to because it is all worth all these years of struggle.
P.S. My next U of C appointment is on March 12.
Posted in Running | Tagged Family, genetic testing, mom, University of Chicago | 3 Comments »
Giving up an inch is like giving up on hope
February 19, 2014
t moved again. My CEA (tumor) count went up again—slightly, as my nurse told me. True. An incremental .10 increase is small compared to a full point increase so I should not be worrying. (Note: I had another blood test a week after when my platelet were low to check if I have recovered and if there are any CEA activity).
If you follow the Sochi Olympic or any world class events, the difference between a gold, silver, bronze or a world record is measured by centimeters, inches, or micro-seconds. At this level of competition it requires years of dedication and sacrifice. Everything must be perfect the moment you step on the ice or the starting line of an elite marathon event. You don’t give an inch, a micro-second, or a goal until it is time.
Similarly, I may not be a world class athlete but each time I give up an incremental increase in my tumor count, I feel robbed. I hate it. I have made many sacrifices and my cancer still manage to shave off something out of me. It is slowly thinning out my hope for cure. Besides I don’t have anything to spare especially when my CEA count is more than 100% beyond the normal threshold.
I am not giving up.
Today, I consulted with doctors at the University of Chicago (U of C) Hospital to see what are the possible cancer trial programs open for me there. I am now looking at experimental drugs that might fit me. Like all consultations I have done from Mayo to MD Anderson, and now U of C, there are only possibilities and hope. This is the nature of cancer: there are many elements to consider.
They believe that my immunity is strong that I am able to co-exist with my cancer or that my cancer is weak. They also believe that the CEA tumor count can be misleading. To settle matter, they recommend a CT scan for comparative analysis. This way it will be conclusive if my CEA count is giving me false positive readings. A growth in my tumor means my CEA count is giving me the right signal; otherwise, they are treated as noise.
They also believe I can fit into an immuno-therapy trial because of my profile. It is like weaponizing my immune system to target my cancer. Or I try this other chemo pill. So, there are options and possibilities which is all what I can hope for.
It also means I have just broaden my team to help me beat my cancer at world class level. I willing to do the work and make any sacrifice to take back that inch I was robbed. It starts tomorrow, when go back to my unfinished chemo.
P.S. A surprise “care package” came in yesterday from my German friend FrankH. I appreciate it. Thanks. (I wrote about FrankH in a post dated November 7, ‘I am ready.’)
Posted in Cancer, Health and fitness | Tagged CEA, immune system, immuno-therapy, Sochi, world class | Leave a Comment »
Snow day for me.
February 7, 2014
“You make it to February there is a good chance the change or resolution will be lasting.” I wrote that in my previous post due to optimism brought in by a new month. I should have added new challenges too.
Yesterday, I got sent home early from my “chemo” school. I was far into my drug-induced dream and have received several CCs of chemo, when my wife woke me up and said:
“ The lab called and your platelets are low. They are stopping your chemo.”
Low platelet counts mean I am prone to bleeding. Chemotherapy can cause your platelets to go down, there is a certain threshold that they don’t cross and I just crossed it. I sometime have nose bleeds before and my body can still take it, but this time it is risky.
My first thought was now, with a skip in my heart beat, was my CEA (tumor count).
“How is my CEA?” I asked my wife. “Not back from the lab only the platelet count was called ahead.” In a testy voice, I said. “Are you sure you are not hiding anything from me?”
My nurse, Edith, assured me the CEA count has not come in yet and that my doctor is coming to talk to me. These talks make me nervous but he just told me the same. We stop for now, rest, and re-schedule. It’s a snow day for me.
Later in the afternoon, my nurse called to tell me the results of my CEA count: high. It went up.
February just turned cold.
Posted in Cancer | Tagged CEA, challenges, February, low platelet counts | 4 Comments »
January is the month of change
February , 2014
February is the month of lasting change. That came from the article by Marc Parent of Runner’s World magazine. January to me is an important month; I was given a bad prognosis January 2013. I look at January as a month of renewal, and for some a month of resolution. It is also littered with failures past.
That’s why February is the month of lasting change. You make it to February there is a good chance the change or resolution will be lasting. Recently, one of the change I made was to give up coffee again, and this time tea. My relationship is with coffee is like a recovering addict. I have given up coffee long ago (2010), then I fell off the wagon. I know the comparison is not the same as drugs or alcohol but I can relate to it as a wildly available temptation. But I try my best not to give it, even when I am in Starbucks.
I have these experiments in my mind. Can I make it this week without coffee or tea? Yes. Then, I ask the question again the following week, and the following week until it is a habit. Most often, my decision to give up something is based on whether it will increase my chances of being a cancer survivor.
Coffee, and maybe tea, dehydrates me specially during my chemo days. There was a time when my kidney functions was affected and that was enough for me to stop. Instead I drink water and lots of it. I am hoping that this time it will be for good.
Let’s see come January next year if I fell “off the wagon” again.
Posted in Diet, Health and fitness | Tagged giving up | 1 Comment »
I just go with it.
January 5, 2014
There is a sense of freshness I see all around me each time I finish a chemo cycle. I see things differently. The air is fresher…cleaner. It is as if it is the first time I see, smell, and taste things.
I think this come when you have to pay for the moment. I had a rough rebound from my chemo. I had chills, long sleepless nights, nose bleeds, vomits, and more vomits. Yes, there was a moment that I though of giving up, I just held on. But I got over that. I even made to my gym Saturday for two classes: spinning and yoga.
Life is amazing. In my case, literally, life is about ups and downs. At my yoga class, my fellow yogi were surprise to see me and that I look clinically good. You will not know I have cancer if you see me: That is their common comment. I wish I did not have this cancer. I live my life differently because of it.
I make the most of the time when I am off chemo. I get impatient too when I am off chemo because I have limited time and I have things to take care of, or there are demands of me. Big things to others but from my perspective they are non-life threatening or minor. I just go with it.
My days, weeks, and months are planned around cancer. Some plans pan out and some don’t. I just go with it.
I have predictable good days and bad days, and I just go with it.
Tonight, however, will be truly delightful night: Season 4 of English drama, Downton Abbey, premiers tonight. I think it is time to tea…just go with it.
P.S. Happy new year to everybody. Next chemo is this Thursday, January 9.
Posted in Health and fitness | Tagged Downton Abbey, life and cancer | 1 Comment »
E’s World: Hello…Santa!
December 25, 2013
Red is my new favorite color. The big guy (Santa) wears it, and he seems to be all over the place; in the mall, in stores, in parades, and even races. He has been so busy, but he managed to pass by the house last night.
I love this guy. He gave me and my family many gifts. I got clothes, snow boots, a toy truck (which I love), a tablet, and some more clothes. I outgrow them fast.
I am beginning to understand the importance of Christmas: Me! It is all about me…me…and me. Also, I am beginning to learn the power of tantrum too. I cry and they give; especially with my Grama (that’s my great-grandmother). My Grama is such a push over. When mom is at work, Grama is my babysitter. She would chase me around when it is time for lunch, then she give up. But then again, I get hungry.
Mom tells me if I behave I can be Santa’s helper next year. That would be the coolest job; one for me, one for you…one for me, one for you. That’s why I love Christmas, too bad it only happens once a year.
My family had a busy year and they are thankful that they got through it. Next year I will be ready. It is really about being ready if you think about it; ready for the next day or the opportunity to give back. The spirit of giving. However, I am still young, unemployed, and still in diapers, so you better be ready to give …to me! I love it.
Jingle bells…jingle bells…jingle all the way.
Oh…I got behave tomorrow. My Ampa is having chemo tomorrow.
Posted in E's World | Tagged giving, Merry Christmas, Santa | 1 Comment »