Wednesday, October 12, 2011

My hair, birthday wishes, my parents, and scans

Dear friends,
It's been a while since I blogged. As it turns out, my jubilation over my hair growing in my last entry was premature. The next week, after my white blood cell count dropped, my hair started falling. I put up with it for a few days, unwilling to let go of this precious return to normalcy, but after vacuuming my pillow ever morning and washing the bathtub, I soon got disgusted. Plus, it kept coming off in patches, and looking in the mirror, I was reminded forcibly of those flea ridden, stray mongrels that wandered the streets of Delhi. That settled it for me -- reluctantly, I decided to shave my hair off again. I wish I could say to you, dear friends, that having made the decision, I was calm and dignified about it. I was not. I sulked and moped all day, not heeding Andre's assurances that it would grow back again. I know that, of course, but I couldnt help feeling that it was unfair that I had to go through this twice. Andre pointed out that the clean shaven Tibetan monk look would be less disconcerting to my parents than the flea ridden mongrel look, so the day before they came, it was back to the Tibetan monk look. Now I'm just waiting for the Tibetan monk disposition to come.

What has cheered me tremendously through this all, though, is the lovely surprise you all have thought up for my birthday. I LOVE IT!!! When I got the first photo greeting of the Math Department, I laughed and thought it was sweet. When the picture of Vivienne arrived the next day, I wondered what was up. Now, I wait eagerly for the mail to come so I can see your beautiful smiling faces wishing me for my birthday. What a lovely birthday gift .... I couldn't ask for dearer friends than you and I cannot tell you how thrilled I am to see your faces and read your wishes. This is indeed turning out to be a wonderful birthday month. Thank you so much! Whose idea was it? Whoever it was, thank you, and thank you to all of you for sending your wishes my way.

The other joy in my life is that my parents are here now. They arrived last Thursday, and were in much better shape than I expected. My father is 81 years old, but you wouldn't have thought that he had been through a 20 hour flight if you had seen him that day. It was such a relief. I think they were relieved too, to see me smiling and moving around normally. We'd each been imagining all sorts of dreadful things, reality was kinder for a change. Mira was excited to see them. She called us three times on our way back from LAX to ask how much longer it would be. She is now enjoying being spoilt, again. And my parents are thrilled to spend time with her after so long.

Having my parents around takes the burden off of Andre too. He found it so much easier to pack for this trip with LA because my mom cooked and packed food for us to take and my dad took care of Mira. My mom's cooking is, of course, the high point for me right now. I had been craving her food for so long. To have her in the house and just smell the smell of her cooking, instead of making me nauseous as most cooking smells did in the past, evokes a sense of safety and security. It is the smell of my childhood, and eating that food nurtures my emotional and my physical self. I am so glad my mom is here!

With them, my parents brought assurances from our family's spiritual head that things would steadily improve for me and that I need only keep faith. I told my parents that each time I have wanted to give up, my wonderful friends have carried me and kept the faith for me. They are both so moved by all the love you all have showered on me. As am I.

Thanks to all this, this last round of MTX has gone well. I had very little nausea and slept through the first two days when we were not watching The Great Queen. The only down side was the result of the scans. First there was a lot of confusion whether they should be done with contrast or nor, then finally Dr. Forscher decided that contrast wasn't necessary since he didn't want to impact my kidneys any more during the MTX. 10 minutes after the scans were taken, we were in his office looking at them. And while there was nothing bad as such on then, Andre and I agreed afterwards, that it was a disheartening meeting. First of all, the tumors that were in my lungs, especially the left one, have calcified. That is the normal reaction of osteosarcoma to chemotherapy, so that's good, I guess. There seem to be two other spots that showed up, one on the liver and one o the duodenum, but they seem calcified already. The problem is that it is so unclear what this means for after this regimen is over (5 more rounds left!!). Forscher listed the options starting with no treatment, just observation, periodic rounds of MTX, to various immune booster pills that he says are in various stages of being tested. The problem for me is that it is unclear to me what the criterion is for choosing, and what the goal is for any of these medications. Apparently, the usual thing to do with the calcified tumors is to resect them, but surgery is not an option on the lungs. The thing Forscher is concerned about is that it appears that the calcified part is pressing on the bronchus and that might be the reason for my coughing. He said that he will consult with his colleagues about what the options are. When we spoke to Susan today, she said that she doesnt think things are so glum. She says that this is all uncharted territory, so we should just wait to see what will happen at the end of the regimen and then, if we need to, we'll get several opinions on how to proceed. All I want is a red tape stretched across the road with a big sign reading "finish line". Sigh!

Anyway, I am looking forward to driving home now and seeing the birthday greetings from the past three days that I have missed. I also have plans to make -- I promised Mira that she and I would go get a "spa" experience for my birthday (a manicure and pedicure), so I have to find a place that is nice but not too overwhelmingly so that it sets her up for disappointment in the future! Diwali comes at the end of the month and my brother and his family will be coming to be with us. I can't wait to see my brother, sister-in-law, and my niece. So, lots of good things to look forward to, including setting up this house so that I can have you, my friends, over.

Take care and thank you again.
Love,
Radhika.

7 comments:

  1. It's so nice to hear from you! I miss you and think of you so often. So glad you are being surrounded by so much love and support. And even in your adult life, there is something so comforting about our mommies! Glad your mommy is here to help take care of you.
    Love you!!!! Hang in there. Bald is beautiful!!!

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  2. Thanks for the awesome update! We all think about you so much.

    Love
    Bianca and the gang

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  5. Happy Birthday, Radhika. Hope you are basking in the glory of your parents' caretaking and enjoying your day with your family! Thinking of you, Love, Kim

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  6. Happy Birthday, Radhika! Bald is indeed beautiful--and the only time anyone ever asked me where I got my hair cut was when it was growing in afterwards. No bad hair days! Lots of love.

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  7. Hi Radhika,

    I've been thinking of you, and Marcia just shared your blog link with me. Sending you warm thoughts and love!! Happy, happy birthday!! Lots of love! Leanne (from Palomar)

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