what a week!

Dear friends,

I am so very tired -- I have never felt so low in all my life. This journey is full of ups and downs; right now, I am definitely in a valley somewhere, trying to claw my way out. Partially it is because I caught Mira's cold sometime last week and it hit me like a ton of bricks. It's ironic, tumors on my spine and that cavity I'd never heard of called the mediastinum, and stuff on my lungs ... all I felt miserable about all of last week was this cold and how it made my entire body ache. It exacerbated my coughing and that made my ribs hurt and at the end, my whole body was in agony.

To make matters worse, on Thursday, we found out that the Mayo had reviewed the slides from my 2006 Scripps surgery and decided that it was NOT low grade osteosarcoma, but high grade. They did not, however, say anything about the biopsy, which is they just termed as metastatic osteosarcoma.
I was so confused and upset. I spoke with Dr. Forscher and he agreed that it was surprising because clinically, it looked like low grade. However, since there was doubt, he said that he wanted to have the slides checked at Cedars before we started treatment. So, I scrambled trying to get the slides that had been sent from Scripps to Mayo back to Cedars, and also to have Mayo send their slides from the biopsy to Cedars as well.

Truthfully, I felt this was more Mayo nonsense. The initial pathology from the biopsy in 2006 had identified it as a low grade sarcoma, the surgery had confirmed that. So, Mayo was saying that both the outside pathologist and the Scripps pathologists were wrong? Plus, I was confused -- why had they not done a report on the biopsy? I went through a painful procedure -- they damn well have done something with that tissue that they dug out from inside me. Forscher had no answer for me as to why the Mayo had not looked at the biopsy. I couldn't get a hold of anyone at the Mayo ... and I am so tired of calling there. In fact, I'm so tired of calling and filling out forms so that I can just get information to go from one place to another and everything takes forever.

Yesterday, Dr. Forscher told me he got slides from the pathology lab that did the initial biopsy in 2006, and he and the Cedars pathologist looked at that and agreed that it was high grade osteosarcoma. He is still waiting to get the slides from the Mayo ... but this news now has me in shock. Scripps was wrong! In the most fundamental way .. not just in how they treated me and what I went through, but they had the initial diagnosis wrong.

High grade osteosarcoma is responsive to chemo, low grade is not, so right now, Forscher is waiting to get the other slides and run some tests before he can decide what kind of treatment I should have. And what is ironic about this is that I went and met the radiation oncologist that he had recommended at Cedars Sinai and, for the first time, felt that I had met a doctor whom I was willing to trust and start with.

Dr. Behrooz Hakimian is a unique, wonderful person and his plan was to give me a low dose radiation 5 minutes a day for 10 days. He felt that that would arrest the tumor next to the spine, shrink it, perhaps even make it go away completely in the best case -- and relieve my pain symptoms. It was so easy to talk to him because he was so open and willing to listen. I asked him tons of questions, told him all my fears, and somehow, felt assured that I could trust him. At the end, as he was getting ready to leave, I told him how scared I was of chemo and jokingly asked him if that was the reason he was a radiation oncologist instead of a general oncologist.
He smiled at me in response, sat himself down again and said to me, "You and I have more in common than you realize."
I looked at him in surprise, and then he said to me "I had osteosarcoma in my shoulder 22 years ago."
I sat back and gaped at him. "Chemo saved my life," he said, "I really believe that."

I was so moved that he had chosen to share that with me -- I gave him a big hug and thanked him. As we sat in the car driving back, I told Andre that I was willing to trust the treatment this doctor was proposing. Now, of course, that may not even be part of my treatment plan.

Which makes me relieved that I did start with the other part of my plan. I had been looking into boosting my immune system and Andre and I had discovered the Orange County Immune Institute up in Huntington Beach, that offers treatments towards that. Andre and I researched this place and talked to some friends who have had positive experiences with the methods used at this clinic. While we cast about for what the right treatment is, I wanted to start something that will give me a sense that I am equipping myself to deal not just with the cancer, but with its treatments as well.

So, all of last week, we drove up and down between San Diego and Orange County, which has also taken a toll on me. I really liked the doctor running the clinic, Dr. Ferre. After seeing me for two consecutive days and taking in my pinched face, she said that she was going to have me see a pain specialist, and she had me in to see one the next day. And that was a blessing because he looked over my medications, changed them around and now, I am off of the Ambien in the night, being able to sleep and manage my pain much better.

Now, we will wait to hear back from Dr. Forscher and I am seriously considering having, at least, just the slides sent over to M.D. Andersen to get a third opinion. I have an appointment with their sarcoma center in mid-March since that was the earliest they could get me in, though we may not wait that long to start treatment.

Dear friends, I am sorry for not having blogged earlier. I am running very low on energy these days and that cold really knocked me back. The pain specialist really helped and my arm is much better now. Hopefully, I will keep up more now and there will be better news .... we'll hope. I love you and miss seeing your friendly faces. With lots of love to all of you,

Radhika.