Facts are important . . . and sometimes elusive.
Two weeks ago today (9/18) at 9:00 p.m., I got an email that a new appointment had been scheduled for me at MD Anderson. I logged on and saw that it was with the stem cell department. Great timing for something like that, huh? Of course, there was no one I could contact on a Friday night at 9:00 to find out why that was scheduled. It was a somber weekend, as we feared the worst, because the MDA doctor had not had any interest in scheduling a stem cell transplant consult until the MYC results came back and then only if they were positive. So, we assumed that’s what had happened.
On Monday, I emailed and called and got no response most of the day. Around 2:30, I got an unrelated call from the radiation oncology department from MDA. She said she had received an order on Thursday (9/17) to schedule me for a consult with their department. This continued to be bad news, as that order was received three days after my first and only appointment at MDA, and they knew when we left on the 14th that we weren’t likely coming back. Now, two new appointments were scheduled with no explanation . . . no facts for me to consider.
At 5:30 that afternoon, the nurse finally returned my call, said she could see how those appointments might have been upsetting, but they were just automatically scheduled. The test results would not be back for another week. She would go ahead and cancel the appointments. Sigh . . . it was yet another very frustrating experience with MDA, and we still knew nothing about the results. But the fact was, at least the news wasn’t bad. I decided after my three days of gloom and doom that I was going to live as if I was well until I found out anything different. So, that would give me until this week to “be well.”
In the meantime, I had my MRI and my PET scan last week. On Monday of this week (9/28), I met with my new Emory ophthalmologist, and he gave me good news. He said my eyes were completely clear and he saw nothing that would concern him. Those are some positive facts I can rest in. Yay! I will see him again in three months.
On Tuesday, I met with my new Emory Neuro-oncologist. While he couldn’t see my old scans to compare to, so couldn’t tell if the scan had changed (even though I brought the scans personally to Emory weeks ago . . . aarrgghh!), he thought the MRI didn’t look concerning. There was at least no brain involvement. So, I’m going with that being good news, too. We also asked him if the PET scan results were back. He said they were and while that is not his area of expertise, he could read us the notes from the radiologist. They said there was no sign of anything hypermetabolic (like cancer) on the scan! Woohoo! That was excellent news, because if there had been, we’d have to start talking about beginning again with chemo. So, after he compares to my old scans (assuming Emory can find them or get them sent from MUSC again), if he still doesn't see anything concerning, I will also see him again in three months.
In the meantime, while I was at my appointment, the MDA doctor called, so Eric answered my phone. The MYC results came back . . . inconclusive. Ugh! Evidently, the biopsy piece they had to test was not big enough, so we don’t know whether I am MYC negative or positive. This puts us back in the same place we were before we went to MDA, having no real facts that will tell us whether or not the transplant is likely to help me and be worth the risk. However, the MDA doctor did say that if the PET was negative, he would consider me to be in full remission, and he would not recommend the transplant. He said he’s not convinced that there would be a benefit to doing the transplant. That is good news to have, but we still don’t know what the Emory doctor will say, since he’s the one who suggested the transplant in the first place. Eric said as far as he’s concerned, the burden of proof is on the Emory doctor to convince us there is a true benefit to the transplant, at this point. My appointment with that doctor (my Emory Hematologist/Oncologist) is a week from today.
Thank you all for continuing to pray for me and my family! We are so encouraged by all of you. We are asking you to still pray for good news on Friday. To be honest (this is my confession), the skeptic (and control freak) in me is having a hard time believing that we truly know that the PET scan is clear, because what if the other doctor misunderstood the results? Of course, assuming he can read accurately, the facts are good. I think I will just feel better when I get the official word from my main doctor on Friday. (Yeah, apparently, this need-for-control thing is still not worked out of me. :-/)
In the meantime, I will focus on one of the confirmed facts I do know! That is that God has blessed me with an amazing daughter who just turned 16! She’s had to give up a lot and endure much over this last year . . . a sick mom, extra responsibilities, uncertainty of my/our future, moving, more goodbyes, starting over at another school for her junior year, finding new friends, etc. Yet, she hasn’t complained. Really! She just takes what life gives her and trusts that the Lord is ultimately in control and knows best. Through it all, she is joyful, hopeful, a diligent and excellent student, a great caretaker, an amazing daughter, and a wonderful friend . . . to me and to all who know her.
So, I don’t have all the facts I want, but one fact I know is true is that my daughter is a true gift from the Lord (Psalm 127:3), and I am celebrating 16 amazing years with her!
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