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Monday, May 9, 2011

I'm back ... :)

I've wrested control of my blog back from my ghostwriter ... :) I really ought to be more grateful to him than that sentence indicates. Still, I am feeling well enough to write today and I just heard Julianna's beautiful voice half night long to inspire me .... how can I NOT write? If you haven't heard the song, click on her name above.

Truthfully, though, writing this post to you feels strange ... I feel so disconnected from the world right now. Julianna, I have no idea what inspired you to choose the words you did, but they are perfect for me to hear. I do need to open my eyes to the grace and love that is pouring into my life from my friends right now. I see reminders of it everywhere, everyday. And I feel how all of you are indeed fighting this with me …have fought it for me, in fact, these past weeks.

After that IFEX round, I was lost in a deep mental fog. The nausea was awful, but worse, was the feeling of absolute emptiness that I came back to. It felt endlessly grey everywhere I looked and my life seemed not worth living. Some of you who kept vigil over me, Marcia, Ranjeeta, Ruth, saw me through those dark days, while Andre held me through the nights whose end I dreaded because I woke up in tears at the prospect of another day. Even then, I could hear your messages of love … it just seemed so far away, as though I was enclosed in a bubble that would not allow anything but the gloomiest of thoughts to penetrate. I didn’t understand what was happening and I felt no strength to get up and move; in any case, it didn’t seem that there was any direction to move in. Healing, health, life itself, seemed an unreachable vision that I had best give up on. I read some of your beautiful e-mails and cried – why would you think that it was worthwhile for me to live? And surely, I couldn’t live this way, empty of feeling anything but sadness, suffocated by the certainty that my life so far had been worthless and I had best not waste any more time and effort on it.

After a week of this, prodded by Marie’s advice, I told Andre and Kali that I needed something, some medication because I knew that, though these feelings might predate my treatment, there was no way I could go on with them. And, to our relief, Dr. Forscher prescribed the medicine that our trusted friend, Suvrat, recommended. Lexapro came into my life like a light beam. Within a day of having it, I actually woke up without tears, and now I am convinced that a minimum dose of it should just be added to the water supply!

It was partially the Lexapro and partially Andre continuously pointing out to me that my pain was lessening that persuaded me to go back to Cedars for the MTX round. I went with so much trepidation but with my dear friend, Kali’s advice ringing in my ears – SURRENDER, she said to me. And so I did. Mentally, I gave myself over to the treatment, decided that I was not going to try to control any of it, that I was going to trust in whatever happened and just sleep. So, we stayed in Cedars for 8 hours and I slept for most of the time and then we went back to our sanctuary, that beautiful apartment.

Sitting there on the couch, feeling numb and dazed, I looked around and saw all the love that was pouring into my life. I saw the love and care with which Leticia and Kent had set up the place, saw the beautiful blanket from Vivienne and Marie, heard Andre tell me about the realtor who helped Leticia find the place and marveled at the kindness that was filling my world. And when Andre hugged me and told me that I deserved all of it, I opened my mouth to deny it and found that I couldn’t. Surrounded by such powerful messages of love from so many people whom I love and respect, it seemed crazy, childish to cling to this belief that I was not worthwhile. So, that’s another thing that I’ve decided to let go off, though I must confess it comes back after every treatment. Still, with all the reminders I have from you, I fight that feeling and I am so grateful to each of you for giving me these weapons. Oh, Julianna, how perfectly your song says it all! Thank you!

I have done so much better on the past rounds. This last round of Adriamycin went well. I listened to Julianna’s song all through the nights and I was able to withstand the nausea, thanks in part to a lovely gift from Anurag and Latha of DVDs of a show called Avatar. Have you seen it? It’s an animation series on Nicklodean that’s just lovely. It’s gripping, funny, and addictive. Every time, nausea threatened, we would stick a DVD into our player and I would watch until my system quite forgot that it needed to throw up!

The best news is that the pain in my arm has diminished greatly. I am still on the pain patch but my fingers feel much better (I can write again and see, I’m typing again!) – a sign that the chemo is kicking the tumors. Thank God! It reconciles me so much more to the whole treatment, though I still whine about it being so long.

I started writing this blog entry on May 9 after a lovely Mothers Day with Mira, Andre, and Anurag, and I had hoped that I would be able to finish it during the treatment, but the ADR, while kicking the tumors out, also knocked me back a little. It’s taken me two weeks to come to the point of wanting to turn the computer on again. The odd thing is that once I feel better emotionally, my mind keeps coming up with these things that I want to do, write the blog, read my e-mail, call a friend, but it sort of ends there. My body refuses to follow through. The effort to do any of things that I think I want to do seems more than I can exert – I hate feeling that way, and that ends that feeling better moment. It’s frustrating! Then I sit there and wonder how I can possibly have such incredible friends and it seems that this, like the meaning of life, is a mystery I cannot solve right now. It’s comical – exactly 3 days after every treatment, I sit on my bed in tears and ask Andre what the purpose of life is, and he tells me austerely that this is not a question I should be investigating while on chemotherapy. Perhaps he’s right, but it is a question that occurs to me very forcefully at that time.

I have a new look now. What do you think?

I had my head shaved a month ago. Marcia and Linda were with me, holding my hands and stopping me from feeling miserable about it. I am used to it now and I even like it. Still, I want to go wig shopping soon. After all, what other opportunity am I going to get to try out different hair styles all at once? And won’t it be fun to try different colored hair? Can you picture me with a pink Mohawk? Mira is very excited and I rather think that I will need to get something in pink to please her. She has been wonderful through all of this, though we have had some meltdowns. It was her birthday yesterday and I was actually able to make some cupcakes for her. I felt so proud of myself! We plan to take her to Disneyland next Friday (we’ll get a hotel room so that I can take a break in between). I think back to January when reading to her at night was too hard for me to do and I am so grateful for this now. As hard as this regimen is, I do have good days and as my best friend, Kali, keeps reminding me, I need to remember that when the bad days come.

We go back to L.A. for the next round of MTX on the Tuesday, May 31, after Memorial Day. We will be up there on Tuesday, Wednesday, Thursday, and then back home to recover before returning the following week. So, I still have this coming week to enjoy and it’s wonderful that the semester is over and Andre will cease to be torn between taking care of his students and his family. Thank you so much to all of you who have helped him keep his sanity through this tough time. He is such a source of strength for me – I doubt that I could make it without his love.

Thank you to all of you who donated for my catastrophic leave. I deeply appreciate your generosity. I just read Stephen and Vivienne’s comments and I feel special to belong to such a wonderful community. I look at all of you and think how lucky I am to know you and to have you in my lives. Thank you! And thank you to Julianna and Tomas, your music is so amazing, so beautiful and Vivienne is right, I will take it for my anthem to heal and get well.

With love to all of you,