Saturday, December 12, 2015

Is this it? Am I getting ready to flatline? My scary myeloma experience

I am heading into stem cell transplant next week to treat multiple myeloma. On Tuesday, I got for my high-dose melphalin where I will need to chomp on ice non-stop for about 20 minutes. The following day, I will be moving into a two-bedroom Marriott Residence Inn for some two weeks and also getting 20 million of my own stem cells injected back into my body. Fun times! I rented the apartment so that my family and I can spend Christmas Eve and Christmas together. I purchased a tiny Christmas tree and I am taking up all the gifts and decorating. This is not an ideal situation but at least we will all be together.

So leading up to transplant, last week I was scheduled to get platelets (I am always low on platelets since starting wicked D-PACE chemo in the hospital in early November), Zometa to strengthen my bones, and IVIG that strengthens my immune system. IVIG takes forever, followed by the two other treatments, all via IV, that when I showed up for my treatment, we decided to give me two of these meds at the same time -- IVIG and Zometa. I have a double port, which means that I can receive two meds going into two different veins simultaneously.

So we started the meds and all was fine. I was writing my Divorced Moms column and then, all of a sudden, I wasn't feeling that great. I pushed the feeling aside, attempted some deep yoga breathing and tried to center myself. That went nowhere and I immediately started feeling worse. Racing heart, sweating, feeling sick... I pushed the button to call for my nurse.

"I don't feel well," I said. "I'm going to throw up." She gave me a pan and I threw up. And I felt worse. I can't even describe it but it was out-of-body scary. I closed my eyes.

Before I knew it, I could hear the nurse calling for backup. I opened my eyes and the room was filled with people. My blood pressure was dropping and my heart wasn't consistent. I felt horrid. And then I heard the voice of my husband. William had arrived and he put is hand on my shoulder. "I'm here," he said. I nodded and started crying. I was sure I was going to flatline. So this is how it ends, I thought in the nether regions of my brain. But my husband was there.

They wheeled me down to the ER. They gave me fluids and meds and I don't know what else. I still didn't feel ok. I shook and nodded my head and sort of heard people speaking but could process nothing. My life is ending slowly... ebbing. My heart will stop and my spirit will exit my body and, just like I've heard others describe their near death experiences, I will look at all those people looking onto my lifeless body...

And then, just like that, I was feeling ok. I opened my eyes. And ten minutes later, I said I wanted to sit up and I was hungry. And I ordered room service and ate shrimp salad and soup and carrot cake.

It was so horrid and weird and awful. They said that I had a reaction to the injection, not the meds. We gave me the platelets, I finished up the Zometa, and I declined the rest of the IVIG. I was afraid of it.

And there you have it.

Yesterday I had a bone marrow biopsy. Instead of being a brave warrior and having it done without any meds, I insisted on sedatives. I was given IV fentenol. I was floating. I felt nothing. A little pressure but that was it. But I paid for it, yes I did-- I spent the rest of the day feeling tired and hung over. I threw up five times. I slept. I felt "not ok." And then I did. We went and got pizza and watched a movie and my day improved.

The joys of a myeloma journey. And they are about to get a lot bigger and grander next week. I need to remind myself that as awful as I feel, after a few weeks I recover, I feel better, I begin living again. And I reward myself handsomely. This will be no exception. We will go somewhere beyond fabulous for Spring Break of summer vacation, at least that that is my plan. Somewhere like Rio or the Seychelle Islands or Fiji... Thinking about it and making out our short list keeps me going, keeps me hopeful and looking forward beyond icky transplant.

Peace and joy,

Lizzy