I hit a point in the past week where I just didn’t want to answer the phone. I see the message light indicating voice mail and I hold my breath while I run through the call list. It’s not that I’ve gotten a lot of messages with bad news, just that one sort of broke me for a short spell. “Just one,” I was pleading, “when will I get a call with good news?”
At last update we had the MRI. At this point, I think I should express some gratitude for the MRI — the cramped space, the repeated music, the loud noise, the nerves, and 45 minutes to think, “how the heck did I get to this?” — it’s a good mix for a pretty solid meltdown. Probably a well-needed one. Sometimes you just have to let it all hang out. It’s therapeutic.
I got the results of the MRI late the next day. Unfortunately, I had turned the sound on my phone off, so I missed multiple calls from the Radiology Oncologist who had ordered it. He had to be out of town the next day and he knew I would be in an all-day meeting the next day, so, with a sad voice and apologies, he left a message that the MRI showed an abnormality in the bone and we would need to biopsy it. It was 10pm when I heard the message (I was making sure my phone was plugged in before bed) and I’d already taken some Z-Quil to help me sleep.
You ever see a movie where someone is laying in bed, eyes wide open, staring at the ceiling, just stiff and stunned, and NOT sleeping? Yeah. That was me. The overall feeling being, “I’m so tired of tests.”
The next day, during a lunch break from my all-day meeting (those of you who were in that meeting and reading this now… thank you for your patience with me), I got a follow-up call from the Nurse Practitioner, who gave me more info and got me scheduled for the biopsy. The idea of a biopsy and a bone had me completely freaked out. Completely. I mean, hello, it’s a BONE. How do you get a needle in a bone? This would become something I eventually had to just not think about because I was just making myself crazy.
Later that Friday, at home, a message from the hospital with instructions informed me that I’d have to fast for 8 hours before the procedure with only clear liquids until 2 hours before, then none ’til after. This was good news. Fasting? That means sedation! With sedation I could do a bone biopsy. And I did.
Once we got an IV in (my veins stink) and talked with the doctor doing it, the drugs were shared. Kathy says I sighed happily when that happened. It sort of makes me wonder, is the attraction to illegal drugs not so much that drugs make you happy, but more that they make you not care? I had a mixture of a sedative and pain killer. I was awake through some of the procedure and able to say “ow” when they needed to hear it, and upon my “ow,” I got more of whatever it was that made me not care what was going on. I was good with that. After an hour of recovery, we came home where I dozed a bit, ate some dinner, and went to bed early. Most importantly, for the first time in a couple months, I slept well.
We don’t have the results of the biopsy; they’ve been sent to Mayo Clinic for review. The Orthopedic doctor that knows Ewings Sarcoma in bones well, says that, based on the MRI and PET scans, it doesn’t look like Ewings. Even more, he thinks it looks like an Enchondroma, which is the equivalent of a freckle (a visible thing that doesn’t hurt you). While I have been an exception to the rule every step of the way so far, this is the first time we’ve heard something hopeful and positive. We are holding on at ‘cautiously optimisic.’
Today, we also got the final report about the tumor that was in my neck. It is, for sure, Ewings Sarcoma. A treatment plan will depend on results of the bone mass biopsy, but we’re still pretty certain it will include be some chemotherapy. Later this week we meet with the Medical Oncologist where we will learn more about treatment, but maybe not all because information flows slowly. This is all a lesson in patience.
At this time, I’m tired of the tests. I know they are necessary. We need to know what we’re up against. But I’m ready to be done with testing and move on to the battle.
The messages, prayers, intentions, and love of everyone just mean so much. For that, I don’t have adequate words to share how powerful a force that becomes for getting through each step in this process. Kathy and I are so very grateful.