We were very excited to add the fourth and final medication to our Quad treatment.
He took it down and no problems - YAY!
This morning we had our weekly lab appointment, along with the Daratumumab and Velcade. Walking into the Cancer Center today was so different than last week. We felt more confident and comfortable. Not like the scared newbies we were last week. We were cancer kickin' maniacs now!
Our nurse came by and I even asked for coffee while we were waiting this time. She apologized that one of the systems were down and so they were still waiting on some of the blood work to ensure we could move forward with treatment. We asked what Andy's blood count was and she explained that was the one lab they were waiting on. All other numbers looked good - some were still low, but steady. So that was good.
She explained, while writing on the white board, because she was that great and that thorough, that we were waiting on the ANC (Absolute Neutrophil Count) and the Platelet count. These two numbers could actually prevent us from receiving treatments. ANC needed to be above 1000 and Platelets above 50000.
We asked about Hemoglobin and she said they watch it, but not as much as these other two numbers. She was happy to hear Andy was feeling well with more energy, not out of breath, and no weird bruising. All good signs.
We watched some Property Brothers, talked about Christmas shopping, and I sipped my coffee.
Our nurse came over. Well....she started.
It's NEVER good when they start with well.
"I'm glad we went through all those numbers, because your labs aren't where we want them to be. I have a page into Dr. A."
Damn it. There goes my stomach into my feet again. I look at Andy and he looks the way I feel.
His ANC was 700 and Platelets were at 48k - just south of the 50k, but still south. We asked what the Hemoglobin numbers were at: 9.2. Damn it - also decreased from last week's 10. At that moment, Dr. A called and off she went. I couldn't help it. I burst into tears. We did SO well last week. What happened? And why weren't things working anymore?
She came back a short time later - Dr. Al wanted to proceed with the Velcade and the Dara, but Andy should stop taking the Revlimir effective immediately and until next week when we test the numbers again. Right now, we have three very aggressive drugs fighting in Andy's system. All three of those drugs hit the ANC and platelets. Perhaps a little too aggressively. So we need to pause. She continued that Andy is now at a much higher risk for infection and needs to be very careful around anyone, and cannot be around anyone that is not feeling well. He is also more susceptible to bleeding so watch for any unusual bleeding and bruising and call his doctor immediately if anything changes. We just kind of nodded along. She dismissed herself to go get the Dara (which is stored cold and needs to warm up before administered...fun fact).
We sat and cried. WTF. These appointments are so much better when things are improving. But then we pulled ourself up - this is OK. The nurse didn't seem alarmed. No one seemed alarmed and we were still getting treatment. Andy is still fighting cancer like a rock star.
She came back and I couldn't help ask her, although I'm not sure how I worded it. Basically, I started, these numbers are going to fluctuate with treatment, right? This isn't bad, right? Annnnnddd I burst into tears. Again, another medical professional looked at us 'like we were crazy' and I mean that in the nicest way possible. Of course it's not bad! And it doesn't mean the treatment isn't working! Cancer is a wild ride and we just need to figure out how we are going to react to everything and what the best treatment plan is - FOR. ANDY. One of the side effects of all three of the drugs are lower ANC numbers, and lower platelet numbers. This isn't necessarily surprising. And those numbers could be lower next week - maybe higher. And maybe we'll skip a treatment sometime. It doesn't mean anything.
That's the thing about cancer, she said. You can't be a planner. You roll with the punches. And it's a roller coaster. Those numbers will be up and they will be down. And then they'll be down and then they'll be up. She said she's been working in Oncology for 8 years and she's seen it happen. She acknowledged how overwhelming it is, starting this journey. Learning all the lingo. Understanding what it all means. She assured us we have several levers we can still push and pull and right now, we have a plan - take the 2 injections, stop the oral. And next week, we re-evaluate and maybe make a new plan. We talked about how far treatments have come and all the things they are still learning. Again, we are 2 weeks into this journey.
Andy received both injections and she bid us farewell. We walked out, hand and hand, still feeling a bit defeated.
I came home and lost my shit. I'm tired. I'm tired of this for Andy. For our family. I'm over it. And I laid on the bottom for a minute. And Andy hugged me. And let me sob while he was strong. And now I'm picking myself up.
We are 2 weeks into this journey. We haven't even scratched the surface of treatment and Andy's strong and otherwise healthy. He's fighting SO. HARD. This isn't even a setback. It's a side effect and one we can manage. I've looked back on some of your encouraging messages and have reminded myself how strong and mighty our community is. While today's labs weren't what we wanted - they weren't bad either. And so we keep fighting and we keep winning. And we keep praying. Maybe in one week we became too confident that our journey would be an easy one with sunshine and rainbows and singing unicorns. 'Tis not the case with cancer. No matter how successful the outcome.
I'm a planner. I read the last chapter of the book - even though I'll lie and say I didn't. I'll find away to know the ending. I rush through a project just so I can say it's done. I'm always interested in the end result. And life doesn't work like that. And cancer really doesn't work like that. One day at a time. One experience at a time. And today - one breath at a time.
So that's our update. Not bad. Not good. Just cancer.
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