Good pain versus bad pain. In sports, it's easier to tell them apart. Late Friday night, my first night home, it didn't occur to me that what hit me might be good pain. Of course, at the time, I wasn't thinking about anything more than how to make it stop.
The evening started great. By 6pm, I was finally home, and back with my daughter!
For the most part, Katelyn acted liked I'd never been gone. She was a little more distant (no hugs or kisses yet), but was acting very excited to have me around. She said "Mommy" a lot. I did have a weak moment when she asked me "Hat off?" I took off my black and silver stitched hat, and she cringed and backed away. She said, "Hat on," so I put it back on. She repeated the request for me to take it off, and cringed again. We went through this routine three more times. My mom's theory is that she was hoping one of the times I took off the hat, the hair would be back. It was the only time that night I needed the box of tissues.
When it was her bed time, I read her the routine two books. I asked her to pick them out, and she picked the two that we had been reading every night before this ordeal began. I am going to believe that she remembered they were special to us. As I gave her her bottle, I went through her day with her, just like I used to do, and she stared at me the whole time, like she couldn't have been happier or loved me more.
By the time Katelyn had finished her bottle, I was exhausted. My blood cell counts, particularly my red cell counts, which give you your energy, have not yet returned to normal. Plus, everyday life is so much harder than being in a hospital room, even if I was doing exercises towards the end to get my strength back. I said a prayer thanking God for getting me back home, and went to bed early.
At 2am, I woke up and thought all my bones from my pelvis to my ankles had been shattered. The most severe pain was in the knees. Out of the seven prescriptions I'd been given at discharge, none were for pain management. Ryan gave me two Tylenol. Within five minutes, it was clear we would be going back to the hospital.
I would have liked to have gone right back to the oncology floor, to the nurses who knew me and had always provided pain medication as soon as I'd needed it. (At this point, I wasn't even worried about the "why" for this pain.) Unfortunately, the admittance process doesn't work that way. I had to start in the emergency room. Ryan tried dropping me at the door to the ER. The pain was so bad, I couldn't walk, so a transport took me in a wheelchair.
For someone who had spent the last month in a culture that is paranoid of infection because of low white blood cell counts, the ER on a Friday night is a scary place. I asked the admitting clerk for a mask, and I took off my hat because I wanted any special attention I could possibly get as a "cancer patient."
Ryan joined me in the waiting room and held my hand while I whimpered (okay, fine, I was sobbing) from the worst pain I've ever felt. The clerk called my name and Ryan wheeled me to the triage nurse. Ryan later told me a woman in the waiting area who'd been complaining about allergies stood up and protested that she had arrived before me. The clerk responded, "Um, I think she's in a little more pain than you."
At first, they wheeled my chair into the middle of the crowded ER. There were too many patients to put them all in rooms. A belligerent woman nearby was being held in check by two policemen. It was her 30th birthday, and she had alcohol poisoning and was not pleased with being in the ER. Now's a good time for that cliche about life not being fair...
Ryan used the words "oncology unit," "leukemia," and "immune system" with enough staff to get them to move another patient out of a private space and move me in. Shortly thereafter, the ER doctor spoke with my oncologist and scheduled two tests. More importantly at the time, the physician's assistant started me on an IV of Dilaudid. Finally, the pain blurred away.
The two tests that I needed were an X-Ray and a vascular study (sonogram) of my legs. Since I had had clotting issues with my liver, the oncologist wanted to ensure I wasn't experiencing clotting in my legs. The ER doctor told me once these tests were completed, I would be transferred up to oncology. I told Ryan to go home; he didn't need to sit on a hard chair in that Friday night ER while I was lying on a soft bed, numb from the narcotic.
At 8am, I was moved up to oncology and readmitted. Although better than the ER, it was disheartening to be back in the oncology wing less than a day after discharge. Ryan later told me that when Katelyn woke up, she was asking for me. I felt like I had teased her by returning home, only to leave again.
The results of the test showed there were no clots. A relief! A familiar nurse continued me on the Dilaudid IV drip, in my old room. Except this time there were no pictures of Katelyn or cards on the wall to cheer me up. Later that morning, the oncologist on duty saw me. He said the pain was most likely a side effect of the Neupogen, which was the drug that stimulated my white blood cell production.
The oncologist essentially gave me two choices: 1) stay through the evening, continuing on the IV and receiving monitoring, or 2) go home with a prescription for Dilaudid in pill form. He said Dilaudid is one of the strongest narcotics, and in pill form is still multiple times stronger than Morphine (this didn't impress me, as I established earlier that Morphine is useless). Although it would have felt safe, and I would have known the pain would have been minimized, I could not stay in that hospital. I had to, needed to, get home to Katelyn. I felt like I had made a promise to her not to leave her again, and I couldn't break that promise only one day later. I took the prescription for the pills.
Katelyn was happy when my mom and I arrived home that afternoon. Saturday evening, I spent on the couch, but I was still able to play with her. I managed to do her bedtime routine of two books and her bottle. For whatever reason, the pain worsened at night. An IV drip would have kept the medication constant. Instead, I woke every 2-3 hours with the same crushing bone pain as the night before. A pill took 30-45 minutes to kick in, during which time I tried to control my breathing, but wound up mumbling a steady stream of something that sounded like "ow." But I had kept my promise to Katelyn.
I continued taking the pain pills yesterday during the day, and by last night, the pain was manageable. Though much less, it wasn't just in my legs, but all my bones. It still is. Everything aches. I can feel it even in my cheek bones.
We went for a follow-up consultation today. They analyzed my blood and discussed the weekend with me. My white blood cell count today is 7.5k! It had jumped 6k from Friday's level of 1.5k, putting it well into the range of a healthy person's. In retrospect, all of that pain had been good pain. Basically, the bone marrow had been producing nothing during the chemotherapy, and the sudden activity when shocked into production caused the pain. My bone marrow had been crackling and sizzling as it produced an immune system for me.
I can't say that the knowledge that it was good pain would have made the past few nights any easier, given the intensity of it. But it is yet another learning experience in this journey. I can and will put up with whatever I need to in order to heal and be with my family.
Next step is the appointment with the head oncologist this Friday to lay out the plan for phase two.
