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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.

Tuesday, October 4, 2011

Andre: IFEX 2 wrap up

I know that my last entry was a bit frightening. Since I didn’t want you to worry I had planned to send another update sooner, rather than later. Of course my brilliant ghost writer jumped into action instead with a post on Tuesday 9/20, and I can’t imagine anyone being worried about her after that one! By the way, the blog dates are when you start writing the blog entry, not when you post it, so that I have now started to write my updates off line until I get the time to post them. The next 3 paragraphs were actually written on Saturday 9/17 at Cedars, and the rest was written Tuesday 10/4.

Continuing where the last entry ended, Radhika slept until 8PM Friday with only occasional bath room breaks, so the Ativan knocked her out for a good 7 hours. After she woke up we watched episode 43 of the Queen, and at 9:30PM it was time to leave. She was dazed and tired, but wanted to walk to the car nevertheless, since the 2000ml hydration had given her some energy back. The news that we’d be able to go home on Saturday really lifted her spirits, and I stopped by Whole Foods to pick up grapes for her and dinner for me, while she waited in the car. When we got back to the apartment she threw up once in the courtyard, but by 10:45 we were both asleep after having had some dinner: beef and veggies for me, rice and yoghurt for her.

I spent Saturday morning packing and getting ready to leave straight from Cedars. Radhika woke up somewhat unexpectedly at 8:30, saying that she had acidity and briefly spitting up, but after an Ativan she went straight back to sleep. The Ativan is taken sublingually, so it is really the best anti nausea med for her stomach, and the fact that she slept so long after the one the day before would also mean that she’d be fine until the IFEX pump finished at 1:30PM. I woke her up at 11:15, after which we watched episode 44 and then she took her shower. That fatigued her so that she had another vomiting bout, but after some rest she could eat some rice with yoghurt. As it turned out we only got to Cedars at 2:30, because packing up alone took me longer, so that we only got out of there by 8PM after 5 hours of hydration.

I read my entry from April 7 again, and it vividly brought back the memory of how ghastly IFEX 1 was for us. This time we really had only one bad day, Friday, and that was nowhere near as bad as even some of the better days we had during IFEX 1. She lost 4 pounds of weight this time, just like last time, but I think last time her end weight was inflated because of all the hydration she was getting. She was still keeping some food down this time, since we were careful what she ate and she had fewer problems to start out with. The only thing is that she may not remember much about the last day or two, since she was pretty out of it mentally, but from IFEX 1 she remembers nothing at all, so even that is relatively speaking better. Moreover, as opposed to last time, her blood values have almost all been in the range for a normal person. We are certainly glad that this round is behind us, and that Forscher said to Radhika the round before “No more IFEX after that, unless you want more” because I am pretty sure that means we are done with IFEX.

Funny reading these last 3 paragraphs, because more than 2 weeks later it all seems so far away. Radhika's blog entry gives a great description of our first experiences back home. As you can imagine we spent these past two weeks getting used to our freshly painted house and the possibilities it opened up. The smell was completely gone by Wednesday 9/21, and Radhika was doing well. We were a bit surprised when on Friday 9/23 afternoon we found out that her blood test from the day before showed her white blood cell count to be really low. With the impending weekend it made for a hectic afternoon trying to figure out what exactly to do, and in the end it meant another blood test on Monday 9/26 (which ended up showing that the Neulasta shot had fully kicked in and her whites had gone back to normal) and just being careful not to catch an infection in the mean time. Radhika felt fatigued on Saturday 9/24 so that I took Mira to gymnastics and the soccer game by myself, but other than that we didn’t go anywhere and didn’t do much of anything. Radhika never developed a fever which meant we didn’t have to make any trips to Cedars. By Tuesday 9/27 she felt fine, and we spent the rest of the week talking about curtains, kitchens and sofas, buying some things from Lowes, Home Depot, IKEA and the container store, and going for acupuncture. It is a lot nicer to deal with window treatments than chemo treatments! Of course that is easier said than done sometimes, because just as we were getting into the swing of things, Radhika’s hair started to fall out again. This happened after the first round of IFEX as well, except it went a lot faster and led to Radhika getting her hair cut off 10 days after the end of the round. Today it is 17 days after the end of the round and maybe she will get a clean cut tomorrow, but the fact that it took twice as long to get to this stage is again an indication of her resilience. She is now doing well, except for her hair, and the cough which the doctors/nurses/acupuncturist say is caused by the chemo making the lungs drier.

One reason for why we have been motivated to work on our house is that the painting has given us a fresh start for this: all the windows were uncovered and there was no wall art of any kind. Another reason is that Radhika’s parents will be coming from India this Thursday 10/6, and we want the house to be somewhat presentable by then. It is tough though, because these things always take longer than you want them to. We have learned though that we like to think things through rather than going for the next best thing, so on the flip side we have to be patient with ourselves and the process. I am pretty sure that by January we will be living in a vastly improved house.

Looking forward, the next 2 rounds of chemo will be MTX starting on Monday 10/10 and 10/24, respectively. Radhika’s parents will be with us for both of those until they leave again on Thursday 11/3, so they will take care of Mira for us during these 2 rounds. Radhika’s mom is a great cook, so we will all be well taken care off for these 4 weeks. Her next big round is Adriamycin on 11/7, but she didn’t have all that many problems with Adria last time, so we are not really worried about it, especially since it seems quite far away. Radhika’s next scan is on Tuesday 10/11 and we hope it will show the improvements she has felt. Of course I am planning to keep you updated about the results as things unfold during that round.