(written by Sunny)
Friday, March 6th was kind of a big day. Lindsie had woken up with some pretty uncomfortable back pain. Back pain has been a regular part of Lindsie's life for quite some time now, but this was definitely worse than normal. However, something similar had happened about a month previous at a certain point in Lindsie's menstrual cycle and had alleviated a few days later on its own, so she wasn't too alarmed.
That morning Dr. Bridges called to give Lindsie the last of the results she had been waiting for. First, Lindsie's genetic testing that had been expedited had all come back negative. What a relief! This meant that it was safe to go ahead with radiation. There would be more genetic results coming within a month or so, but the major genetic factors had been ruled out. Next, Lindsie's HER2 results had come back positive. Wait...hold the phones....uh what? So that hour we had spent in his office earlier in the week discussing hormone blockade treatment was totally obsolete? Yup.
So what did this mean? Well, it meant chemo and it meant chemo pretty immediately. The next Wednesday, the 11th, in fact. It meant no radiation because doing chemo and radiation simultaneously isn't optimal for blood cell recovery. But didn't we just have a whole appointment with doctor Kuhn to set up radiation for the next week? Yes we did, but now the plan was different. The hope was that the chemo would reduce pain as it started to shrink the tumors. Lindsie didn't mention to Dr. Bridges that her pain had intensified to the point that it was difficult to move because she really thought it would get better on it's own over the weekend.
As the day wore on it became apparent that we needed to do something to relieve Lindsie's pain. And here is where it will probably be helpful to explain how Lindsie's care is handled by a team. Lindsie is seen at Mountain States Tumor Institute (MSTI) at St. Luke's hospital in Meridian. There is also a MSTI clinic at St. Luke's in Boise. Her doctors and their nurses work in both places. Each doctor has a nurse that accompanies them to each appointment, treatment, etc. It is the same nurse with the same doctor every time so these nurses know these patients and their cases inside and out. There are also triage nurses attached to the clinic but not individual doctors. On Friday, while waiting to hear back from Dr. Bridges nurse, Andrea, to get more information about Lindsie's new treatment plan, I spoke with a triage nurse about pain management.
At the time Lindsie was having trouble moving from her bed. Her back would spasm uncontrollably with the slightest movement and the pain was unbearable. Electric shocks exploded across her back leaving her unable to move, breathe, etc., until the pain subsided. She was exhausted. On top of that she was super nauseated from a pain killer, Dilauded, she had been taking to ease the pain. She could get herself to the restroom, but it was a huge undertaking. The nurse called in a strong muscle relaxer and Compazine for nausea. Both of those drugs cause drowsiness. Plus she was to stay on the Dilauded which also causes drowsiness. She was also on Zofran for nausea, stool softener (pain killers do a number on digestion), and naproxen for pain relief. There was a lot of stuff pumping through that girls body and none of it was doing much of anything good.
By Saturday things had only gotten worse. Lindsie wasn't eating, was hardly drinking, and movement was even more difficult than it had been Friday. I called the on-call doctor service to see what else we might need to do for her. When the doctor (who doesn't know Lindsie) called he told Lindsie that she could either stay home with pain meds over the weekend or be admitted to the hospital to start radiation for pain. Lindsie explained that her doctors had just told her she wouldn't be doing radiation because she was going to start chemo. He told her that was all he had for her and that was it. He wasn't the greatest. In fact, he might have been the worst. Lindsie stayed home and continued her meds.
By early evening on Sunday Lindsie had been out of bed one time. She was dehydrated, in pain, and just all-around miserable. She was also feeling sick and generally out of it from all the different drugs pumping through her system. I felt like it was time to take Lindsie to the hospital and that we'd probably need to call a transport service to take her by ambulance because it wasn't likely we could get her into the car. The problem was knowing where to take her. The Meridian hospital is closer and where she would be receiving the bulk of her treatments, but their radiation machine was broken, so if Lindsie's doctors decided to go ahead with radiation to relieve pain we would need to take her to Boise. But if they weren't going to do radiation and just keep her there to manage symptoms we'd way rather have her in Meridian. Of course this had to happen on the weekend when we couldn't reach her personal doctor.
We asked our bishop, who is a surgeon, to come over and help Lindsie and Josh talk through their options. We all gathered around the bed, the bishop kneeling on the floor so he could see Lindsie's face, and talked through different scenarios. By the end of it Lindsie felt like it was time to go to the hospital. I called the on-call doctor to tell him what she had decided and to find out what we needed to do to start the admission process. The doctor had the on-call secretary return my call and say that he had never mentioned admission or radiation and that she was probably just dehydrated and needed fluids at the ER. Uh, what? The only reason we were considering this plan was because he had brought it up on Saturday! It was a pretty jerk move. I then remembered that there is also an on-call radiation oncologist so I told the secretary we were done dealing with Dr. Jerkface and could she please see who the RO on call was. Hallelujah, it was Dr. Kuhn!
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