Thursday, March 24, 2011

Round 2 postponed

Andre here. This week did not start off well: after a fairly good Sunday Radhika had some pain at night, and then escalating nausea on Monday. She couldn't keep her meds down over night and then on Tuesday she couldn't even keep water. We called Forscher's office and his nurse Susan told us that we could come to Cedar Sinai and she would have a room ready for us. So my sister Hannah and I hastily packed up (we will be better prepared next time!) and Radhika and I went off to LA. They indeed had a room waiting when we got there at 4:30 and they gave Radhika IV fluid with pain and nausea meds to stabilize her.

Dr Forscher came to see us right after we checked in and told us that he thought that maybe some of the MTX was still somewhere in her system, and he immediately scheduled an MRI for the next morning at 7. The night went OK, and with the IV meds and hydration Radhika felt better Wednesday morning. One problem was that the strongest pain killer, Dilaudid, only lasts for 2-3 hours and since Radhika was scheduled to show up for the MRI at 6 (god knows why) and got the Dilaudid at 5, then by the time she was in the MRI at 7:20 she was in pain again. The problem with that is that for an MRI you have to lie absolutely still for 30 minutes and the machine makes a lot of noise, so 5 minutes into the procedure Radhika told them to call it off, since this wasn't going to happen that day. Radhika asked Susan if they could do a CT scan instead, and indeed that could be arranged for her for the early afternoon. They did a scan of the brain and the lungs and after we took a break to catch our breath, Forscher met with us at 5PM to tell us that the brain was clear, but that there was fluid in the lungs and that they were arranging to have the fluid removed (which is a good thing, since it can lead to infection) and tested the next morning.

The moral of that story was that it was good that Radhika was her own advocate (the MRI would only have been of the brain, so the CT got us to the possible root of the problem faster,) and that we feel safe in Forscher's hands at Cedar Sinai, because rather than just giving her the 2nd round of MTX he insisted that we find the root cause for the nausea (which he says is atypical for MTX.) Radhika says that she feels that Forscher really cares about her as a person, and not just about the treatment plan ... that feeling is priceless as you can imagine.

This morning (Thursday) she had the CT guided removal of the fluid; again there were some delays, but this time we were smarter in that she only went there at the last moment, and had taken the Delaudid only 15 minutes before that. She came through the procedure fine, and they removed around 400ml of liquid (we were told that sometimes people have 3 times that, but this was still substantial.) After being in the recovery room (which was much noisier than the Infusion center) we went back to the Infusion center, where we met with the pain doctor (who confirmed her protocol for the weekend) and with Dr. Forscher. It turns out that they have to send the fluid to Iowa to be checked, which can take 2-3 days.

So with nothing else to do Radhika checked out and we drove back to San Diego to sleep in our own bed again after two nights of infusions at Cedars Sinai. Overall Radhika is doing much better than she has in a while now, and Mira was happy that we got home earlier than planned. The next will be either next week Monday or Wednesday, and Radhika will skip the MTX round 2 and go right to Ifosfamide. That round will be 8 days long so Hannah will have her hands full with Mira, and we will have some planning to do.

4 comments:

  1. Hi Andre, Sounds like you have a better idea of what will work next time, that is good news! I'm glad you got home early for everyone's sake, but especially Mira's. I know this must be really tough on all of you. Sending good thoughts, Janet

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  2. Dear Radhika and Andre,
    It sounds like a very rough week and I really feel for what you are going through. Andre, thank you again for taking the time to write out the details. I can feel your heart and soul in your words. Thank goodness Forscher is turning out to be so accessible and have such humanity. It's good to know that Radhika trusts him. And I think the poem that Marcia sent is so apt -- about the battle having chosen Radhika and she is facing it head on. Sending both of you my support. Vivienne

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  3. Dear Radhika,
    It was wonderful to talk to you on Tuesday, even for a few minutes. I miss hearing your voice! You made the right decision with Dr. Forscher; I know he will take the best care of you.

    Dear Andre,
    Thank you for your detailed posts. They have been so helpful in understanding what's going on with Radhika's state of health and treatment. I hope you, Radhika, and Mira can have some peaceful family time together this weekend. And please give my thanks to Hannah for taking over after your mother went home. You have a great family!

    As always, I'm keeping you all in my thoughts.
    Love,
    Marie

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  4. Oh wow, that Radhika suggested the CT scan was incredibly fortuitous! I was telling a student recently that intuition can be incredibly powerful, that sometimes following your gut is the way to go. Thank you for the updates, and y'all are constantly in my prayers.

    Stephen

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