Change of Plans

This is Amanda(Deb's daughter), and I'm updating the blog for her. It's been a very long and emotional day, and I want to update everyone on the new plan for her treatment.

I had just arrived at mom's house, and dad slipped out to go to work. The plan was for me to stay with mom until it was time to go to her first chemo treatment at 1pm. My goal was to follow up with the University of Arkansas, since we wanted to have them consult on mom's case. When I sat down mom wanted me to write down all these questions for her oncologist, since we would see him today too.
All the questions were regarding her pain level. They had upped her morphine to 100 and she was still on oxycodone. When I arrived she hadn't taken any of the oxycodone, since it had scared her so much. She wanted to know if it was normal to forget to breath on the pain meds, and if it was normal to start to take a drink and then zone out so she was choking on a mouthful of water. We wrote down everything we could think to asked the doctor, and then I called UAMS.

My plan was to get the info on how to send off Mom's files, so I could request them from the doctor. When I called a really nice lady named Katie answered the phone, and she was just amazingly kind. I caught her as she was just sitting down to work with her first cup of coffee, and we kept talking as she started her second cup. She told me that mom would need to have 3 days of testing in Arkansas followed by a day of meeting with the doctors to review her options. I asked if we could send any of the previous tests, and she said they would need to be redone. Then I filled her in on mom's bone fractures and how she is in so much pain, and traveling would be a real hardship. She asked me why a neurosurgeon hadn't done a vertebroplasty or a kyphoplasty yet.
( I found an animation of vertebroplasty that I found really interesting)I had to ask her what that was...she was just shocked that mom's fractures hadn't been stabilized with cement yet. She couldn't believe they were treating her pain with morphine. I asked her how to get those procedures and she told me we could get it done next week if mom came in for her evaluation.


The first day I heard that mom was really sick I googled multiple myeloma, and saw the great things going on in Arkansas, and then a dear friend told us her cousin had just been treated there and was in remission. Then Jon's(my husband) cousin who works at a cancer center in FL told us we had to go to AR too. We also found out that one of mom's fellow teachers just returned from an evaluation at UAMS, and was really excited about the possibilities. We have been in such survival mode dealing with mom's pain that it didn't seem like a feasible alternative. Each time I go to PTC mom has lost more and more of her ability to move around. If she is on pain killers to numb the pain then her speech is slurred and she can barely function, so then she lowers the dose and can't move. It's a vicious cycle and we haven't even begun to fight the cancer.

Talking with Katie gave me hope. I explained that we had a bone treatment on Thursday, and she had a fever of 102 for several days. Then I told her we were scheduled to begin chemo today at 1pm. She said, "Let me guess they are giving you Velcade, Decadron and Revlimid". Then she said don't start it...just don't start it please. I asked her about insurance, and she took my info personally over to Delores to check the benefits.

I went in to give mom the info from Katie, and she was feeling really panicky. We started praying, and I prayed that God would clearly direct us through the info about insurance. While I was praying Delores called me. She was so sweet, and explained everything step by step to me. We were thrilled to find out that her insurance will cover many portions of the treatment. It is considered out- of -network, so travel and lodging aren't covered. Delores told us that over the next year mom will have to be in Arkansas for at least 3-4 months, and someone will have to be with her at all times. The treatments are all out patient.

After I got off the phone with Delores we called my Dad, and he came to talk with us. They had some questions, so I called Katie again and my parents paster came over to meet with them. I found out that the vertebroplasty will be covered in AR and that it would take several weeks to get it scheduled in Atlanta. They also gave me a recommendation on where to stay that has a recliner, since mom can't sleep in a bed right now. She also assured me that mom would be sedated for the tests, since mom can't lay flat on her back. Katie said that she knows mom has been staged, but they will re-stage her after all these tests. I told her that we haven't found out what stage this is at yet, and again she was shocked. Katie said she was just so glad we had contacted them. So she put us in the first available appointment, and we are going to start the testing next Tuesday at 7:30am.

Many of you know that my dad recently finished building a four seater airplane. I truly believe that it was completed to enable us to fly mom back and forth for treatments. She wouldn't be able to handle the car ride, and going through an airline would be so traumatic. It's going to be rough, and we'll need someone to help us get her in and out of the plane, but it's such a blessing to have a pilot for a father. I'm planning on going with them as we check out this new chapter in mom's journey. Please pray for beautiful weather, so it's not an issue to get to and from AR.
Katie overnighted us a packet with info from UAMS, so we'll know more tomorrow.

We had such a full day, and I'm sure my mom will post a blog when she feels better.
Thank you for all your prayers and support. We are so very grateful.