Saturday, January 23, 2010

Right next to the Santa Monica Pier
The pier. It looked so pretty later in the day.

I love this picture. Good job Shannon. : )

There were lots of surfers out.
Despite the fever I was so happy to be on the beach.
The movie room at my uncle's. I'd open all the windows and let the fresh air in all day long. Loved the breeze.
My best friend Ranger. He hung out with me the entire time I was at the house.
The fevers and bone pain did not let up the rest of the time I was in California. The last night I was there was especially bad. I had the worst bone pain and an awful fever where I was shivering uncontrollably. We all decided it would be best that I went to the emergency room to check and see if I had an infection and also to try and get some better pain medicine since the oxycotin makes me throw up. They took blood cultures and did a CBC. We did find out I was very anemic meaning my red blood cells (hemoglobin) were very low. That explained why I was so tired, out of breath and moving around even the slightest was incredibly difficult. They weren't able to get me any better pain medication except Dilaudid through IV while I was there. We were able to leave by 4am. We had enough time to go back to the house, shower, pack and take off for the airport. So after an all nighter I was trying to make my 7:30 flight. My flight was delayed until 11am. Finally they sent me to another airline and I flew out by 1pm. I didn't get home until midnight. It was a very long, exhausting day and being anemic did not help.

My doctor wanted to see me ASAP once I got back. My appointment was at 7:30am the next day. It took a long time to get everything taken care of and getting me ready for my transfusion. I was supposed to wait to get called from the hospital when they had a bed ready for me to get the transfusion. I guess they lost my paperwork and never called. I finally called by 5pm and they said "oops" and had me come in. The transfusion took FOREVER.

Since California I've had bone pain, fevers, bad headaches, and liver pain. We switched up pain meds and tried so many different things to alleviate all these symptoms. I got a spinal tap to see if there were cancer cells in my spinal fluid. We thought that could be a possibility since I had headaches all the time. It came back negative thank god. I had a CT scan done as well. Once again my liver tumors have grown and very fast. My liver is huge. My stomach is so hard from all the pressure. Everything else is stable, but the liver is the most important spot to worry about.

It appears that the chemo was not working. So, we stopped Gemzar and Carboplatin and I have switched to Abraxane. So far I am tolerating it much better. No more bone pain and I just feel better. The Abraxane is a weekly chemo though, so I will be at Beaumont more often.

Anyway, I am leaving out a couple emergency room trips out of this blog. Nothing really came of them. I honestly cannot keep up with everything that is going on with me. I have my fingers crossed that we picked the right chemo and hopefully next time I write a blog, I can write about something else other than bone pain, headaches, not being able to breathe etc...

Thank you all for your support lately. People have been making us meals and I cannot even explain how much that helps us. I have not grocery shopped in months. I never have energy to make anything at the house anyway. We are loving the meals and are so happy to have one less thing to worry about. Thank you!!

6 comments:

  1. I don't even know what to say other than I am so sorry that you are feeling so crappy. I'm glad you got to enjoy beautiful weather in CA. That is better than the weather we have had. You are always in our prayers. I love your photographs especially the pier and the rocks. Nice composition. You take care. Hugs. Love Amber

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  2. I'm in awe of your strength! I'm glad you have so many people cooking you meals and looking out for you. I look forward to your future blogs, pictures, and adventures. Miss you! Jen

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  3. Thanks for the update, I love the pictures of your trip to California. Glad to read some of the pain has declined. Are you juicing? Thinking about you.
    Shannon

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  4. We continue to keep you in our prayers. Hang in there!

    The Fahlman's
    Regina, SK. Canada

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  5. We are thinking of you here in Austin. I hate that you are going through all of this. Good for you for getting out to CA. It looks like you had fun at the beach and photo shoot. :) Your photos are awesome.

    Love and lots of prayers for you!!
    Michele

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  6. Hi! It's Bonnie [wig lady] in Austin. Please call me asap.have a client that has what you have and has been on a trail. It is making the tumors reduce in size. She called to tell me and I told her about you. I have all the info. Please call me at my house and leave your phone# and I'll call you and give you hers. She would like to speak to you. I will try the BCRC and ask for your number too!.1-512-447-2207
    Bonnie

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