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Well on Wednesday I had my doctor’s appointment and was scheduled to have chemo as well.  After talking to the doctor about the CT scan results, chemo was postponed until further information was sought.  The doctor suggested a line of treatment – Ifosfamide with Avastin, but Sol and I came prepared with lists of clinical trials in the area.  In talking with the doctor, he agreed that we should check into these in case some of them would exclude me if I began this third type of chemo.  He said that sometimes they might want me to try this treatment before allowing me to do the trial.  So he said he’d call Dr. Chow, a doctor at City of Hope in charge of many of the sarcoma trials.

I went home, after lunch and shopping with a friend, and called City of Hope.  We were thinking that we would just set up and pay for a consultation, but I was informed that it would be over $1000!  They asked me what kind of insurance I had and what group I belonged to.  I told her and she said to call my primary doctor and try to get authorization because they did contract with my insurance.  So I called and I believe an authorization request was sent yesterday to go to City of Hope for a consult.  We’ll see!  

In the meantime, I got a call today from the nurse practioner at the doctor’s office.  He told me that Dr. Chow – lead researcher on the sarcoma trials at City of Hope – called and talked to my doctor today.  He said that Dr. Chow said that many of the trials exclude angiosarcoma from participating in the trials.  I began to cry.  He also mentioned that the trial going on that include angiosarcoma are taking place in France and the Netherlands.  He said that the doctors talked at length about treatment options and trials.  I was expecting a phone call from my doctor tonight, but have not heard from him, and it’s already 9:30.  I guess I’ll have to wait until tomorrow.  If I don’t hear by 10:00 am, I’m calling the office.  I don’t want to have to wait the weekend.  I’m ready to board a plane and eat crepes for a while or smell the tulips!

I feel quite depressed about the whole thing.  I know I need to keep hope, but it’s so hard.  I feel like I’m at the end of the road in my options.  I know I need to live in today and not tomorrow.  Today I feel fine, today my doctor is looking for something to help me, today my husband loves me, today my son is a comedic gem, and today there are MANY fervently praying for me!  I know that I can only live life one day at a time, so that’s what I’m doing.  I just want to know what’s next.  Living in this uncertainty brings so much fear.   

That’s all I know.  So I sit here and wait.  I didn’t want to post because I don’t know much about what’s next, but look at the novel I’m finishing!  

Thank you for your prayers.  I’ll update as soon as I have more information.  

In need of peace,

Monica

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