Brief Update

Just wanted to give you all quick update.

  1. On 9/26/18 Teresa had an emergency appointment with Dr. Musgrave for labs and to check her breathing.

  2. Labs generally good but hemoglobin had dropped down to 8.6.

  3. Definite decreased to absent breath sounds on right lung again.

  4. Scheduled same-day thoracentesis at BRMC nearby in Tennessee.

  5. Teresa got 4 liters taken off her right lung. 

  6. In the middle of the night between 9/27/18 and 9/28/18, I sent Dr. Kane at Roswell Park Cancer Institute (Buffalo, NY) an email requesting an urgent surgical consult for Teresa, in which I outlined why she wanted surgery and acknowledged various points up front (ex: we know if you need to resect part of her liver, her recovery time will be longer; depending on the placement of the tumors you may need to do at least one ostomy, and so forth). I also provided him with a link to all of the CTs T has had since he saw her in February, labs, the Foundation Medicine test results, the genetic test results, etc.

  7. On 9/28/18 we drove up to Buffalo, NY. I got a read receipt from Dr. Kane that morning as well.

  8. We had a vague memory from our February appointment that Mondays were the day cases were presented to the tumor board, so the earliest we expected we might hear back was Tuesday 10/2/18.

  9. We didn’t hear anything from Dr. Kane which was both good and bad. Bad because we’re obviously anxious to hear from him. Good because it let us have a more relaxed celebration of my birthday (which we’d started the day before with a fun trip trip to the Walden Galleria Shopping Mall). T does have to be in her wheelchair to go out, but right now she still can go out, which is good. 

    1. Got an unexpected call from the Wellmont Cancer Center about an oral chemo drug they were trying to call in and having trouble with the insurance. I texted Dr. M to find out which chemo it was. It’s the Cabozantinib! This is the targeted therapy chemo for the MET mutation which is in both Teresa’s primary tumor (could be the others too but they can only test what was resected last year) and in Teresa’s actual DNA. (It’s FDA approved, but not for leiomyosarcoma.) 

      Dr. M said she wanted to have a backup plan in case surgery was a no-go, and she was worried it might take awhile to get or that Teresa might have to get into a clinical trial for it, but it looks like that won’t be the case (thankfully). Currently, the Walgreens speciality pharmacy at the Bristol, TN, hospital is working on getting it pushed through. Dr. M is awesome. We’re so glad she’s Teresa’s oncologist. 

    2. I did discover last night, however, that she is having very visible swelling (edema) in her feet, which makes me understandably nervous. This was one of the last things which happened last August before surgery became a “has to happen RIGHT NOW” event. She needs help getting dressed now.

  10. As of 1:30pm today we hadn’t heard anything, so Teresa called and left a detailed message with the sarcoma clinic. (As a reminder, here’s info about Dr. Kane.) 

    1. Still waiting for a call back at 4:10pm, so she called again and got a live person. Eventually I got to speak with a nurse who is going to try to expedite everything. She said Dr. Kane has been in scrubs nearly all day, so it makes sense that we hadn’t heard anything yet today. Sounds promising we may get a call back tonight, and possibly the chance to wheel over there and get her evaluated in person (our hotel is connected by a tunnel with Roswell). *fingers crossed*

    2. Teresa napped much of the day (slept on/off until @noon, had her breakfast/lunch meal and went right back to sleep). Her breathing while asleep sounds labored. 

  11. If anyone calls to talk to Teresa, please be aware we may have to hang up on you abruptly if Roswell calls. Yes, the iPhone has the option to switch calls. No, we’re no good at actually using that feature. 🙂

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