Wednesday, March 29, 2006

Race for Life

My 11 year old niece and my sister in London are walking in a marathon called Race for Life. The money that will be collected will go towards cancer research in UK.

Anokhi and Mona... it is wonderful that you are participating in this event. Cancer is such a broad term that I never thought about the intensity, the age range that is affected and the lives of the families before. This was something we talked about
and then moved on.

When my mother-in-law was diagnosed with Ovarian Cancer I had just moved from NYC to SFO. Still looking for a job after my masters which meant I was a dependant and that word hurt me a bit. Having worked to pay for my very expensive art school in NYC and having left a really good job there my new life in SFO felt a little strange. I realized the frustration of all the HI-B's (dependant spouses) if you do not work you do not have friends, maybe do not have a car which means you are completley dependant and add a new place to the mix.
Around that time we found out that my mother-in-law had cancer and we went to India. On the day I was leaving for India I got a job offer. They needed me to start work in 10 days... I was so torn between my daughter-in-law duties and my much needed independance and ego boost. I had to come back in 10 days and that fact bothered me actually up until yesterday. i.e for 10 years.

Yesterday I was thinking about this and I realized that circumstances pull people in different directions. As a newly wed and a recent grad my entire lifes focus was in proving to myself that I was capable of getting a job and becoming independant and doing what I really enjoyed. We were still in our Honeymoon phase so the insecurity of a total life shift was scary. For so many years everything else was on hold since I was a starving student. A sudden turn of events was totally not a matter of discussion.
In comparison to 10 years back, when Amaey was diagnosed I took -2 seconds to tell Apurva that I was quitting. A job that I so loved. I was more stable in my life. We as a family were more solid and grounded. Our priorities were in order and we respected each other.

Circumstances can definitely test people and relationships.
Looking around me I feel completely blessed that we have such a strong family and wonderful friends that have looked out for us, been there with us. I have known of people that loose friends and family with each test that life puts on them... I'm thankful that we have created more bonds with each difficulty that life has showered on us.

Anokhi and Mona, we wish you two a good walk and I hope you collect the money for your charity. Thanks for walking even though you should medically not be doing so.

Monday, March 27, 2006

Day Hospital

It's been 4 months since Amaey's diagnoses and Day 5 of his delayed intensification. I had to take him to the day hospital since he was to get another chemo today. I told Amaey in the morning that we need to go again but not for blood test or at the clinic but to the room with the big TV and he looks at me with his gorgeous eyes and says, "where I got my platlets?" I just stared at him in shock... "how do you remember that" I really do not know how that boy remembers all this.
Maybe he feels in control when he knows what is going on.

He has slowed down with all the new chemo drugs and steroids. All day long we hear him say he is tired and he has a headache or bodyache. But he can't seem to stop himself... he keeps running after Arjun and suddenly pants and slows down.
He is also going into this phase a really strong boy compared to when we started the treatment in November. We are lot more educated about the phase and side effects as well. Regardless, he seems to be in great spirits so that really helps.

Chicken Pox

On Thursday March 23rd Amaey started his delayed intensification phase.
At 8:15am just as they were taking him into the room for a procedure I got a call from my friend, her 2 children were spending the evening with Amaey and Arjun the night before. She thought her daughter had just developed Chicken pox.

My heart stopped beating. I suddenly felt like a big killer bug on the Pediatric Procedure Unit. All these immuno supressed kids around me... I went and told one of the nurses... after closing the window on me she came back and assured me after consulting with a few more people that I was not contagious. If It was between day 7 and 12... they would have shooed me out of the hospital before i could have blinked.

Now I'm worried about Amaey. He was going to start intense doses of chemo. I called my friend and every hour I tried to get a better idea of the symptoms... their pediatrician could not say for sure if it was chicken pox. We needed to wait 24hrs before we would find out.

When we get home I made the mistake of looking online about chicken pox in leukemia. I tell you that was the dumbest thing I have ever done. This was the first time I realized that I had the capacity to worry to such an extent. Next day morning we still do not know. It's friday morning and I really want to get a sense before the weekend. Finally at 11:30am My friend calls and we find out that it is not chicken pox. phew!!!

All this time we were so cautious about cleanliness, washing hands, our social engagements... and now just a day before his intense phase was to begin I had invited 2 lovely children home and had no idea that it might be fatal for Amaey.
Thank god it was just a scare.
But that did get me thinking that we cannot control life. We cannot control destiny.
This does not mean I will let loose and let my guard down...
I could here it in my parents and my sister and my sister-in-laws voice... How could I let this happen. All I can say is that, I cannot control everything. know I'm doing my best... and that thought has relieved me of the constant guilt...

Monday, March 06, 2006

UC Berkeley survey

Today a lady from UC stopped by. We are participating in the research for the cause of childhood leukemia. The interview took 2 hours. She asked me questions on my life, eating, drinking, recreational habits starting from 3 months before pregnancy until Amaey was 3 years of age.

She had food portion sizes, drinking glass sizes. I did not have answers to all the questions and some of them might not have been super accurate because I do not remember if I drank 2 glasses of wine or 5 glasses of wine 3 months prior to getting pregnant. And I definitely do not know how many servings of fruit Apurva consumed in his life up until now.

This survey did feel like a needle in a haystack.

My question to her was... I keep hearing environmental causes. I said, I come from India and in my 22 years that I was there I must have heard of 2 cases of childhood leukemia... In a country that is over populated, there are no smog tests. Sure cases might not be diagnosed or there might be many other reasons... but still what could be so wrong witht he environment here?
She did not have an answer.

Sunday, March 05, 2006

March 5 2006

Amaey is doing really well at the moment.
We go to his music class every tuesday and school whenever weather permits.
His next phase called Delayed Intensification starts end of March and will last for 8 weeks. The doctor has warned us to brace ourselves for that phase since they will be giving him dexamethasone for 21 days and he will get 2 new drugs. We feel we are less anxious and better prepared now so it should be OK.

My parents will leave by end of March so it will be the 4 of us for the first time since Amaey's diagnoses. In a way we are looking forward to that. As a family the four of us need to chill and bond.

We do feel really blessed to have such a wonderful family who came to our support when we were in need.

I'm settling into motherhood as well. I'm quite enjoying it. I'm involving myslef more in Arjun's school and have finally taken up the much needed home decoration projects. I cannot get over the irony of life though... when one is making money one does not have time to spend it and when one has all the time in the world to spend because they are not working anymore... they need to tighten up.

My parents say this is part of life. They went through such phases much earlier in life when they had to move from the village to the city and then put kids through school, take care of relatives, family, parents and the ever needy neighbors and distant relatives. They say that our responsibilites, nowadays, are shrinking thus whenever something comes up it is magnified.