Good Pain

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.

Why Us? (and how?)

The woman on the Purina Puppy Chow commercial doesn't have cancer. Neither do the actresses of the Real Housewives of Orange County. (Any guesses how I've been spending my time...?)

Yet I do. And I don't have any of the Leukemia risk factors. Though I do have to keep reminding myself I have the most curable type. Still, why me? There are 300 million people in the U.S. Thirty to forty thousand of those are diagnosed with Leukemia each year. Of those, 300 to 400 have my type. Forty years ago, my type was a death sentence.

So here I sit in the hospital bed, wondering how and why me. I know that God has a hand in it, maybe not in giving me the disease, but in giving me the strength to overcome it. In terms of how I came to this diagnosis, I will never forget how I got here.

Two o'clock Sunday morning, February 20th, I woke up with a left side pain that had worsened from the day before. I was concerned about Lily at 14 weeks pregnant, so went to the ER while Ryan stayed with Katelyn. Lily bounced around during that ultrasound, and I was told I had a kidney stone. Maybe that's all it was. They couldn't do a catscan to confirm because of Lily. That was the last time I saw her alive.

I was working on a tough project for work, so Sunday and Monday endured a lot of the "kidney pain" to keep up with the project and because I couldn't have pain meds while pregnant. By Wednesday, the pain was gone. Maybe it had simply been a kidney stone coupled with exhaustion from pregnancy.

Friday, March 18th, we left for a vacation to Florida. The pain in my left side had returned. Should we have delayed our departure so I could go to the doctor again, for what I thought was another kidney stone? Maybe, maybe not. Likely they still wouldn't have found anything. If they had, it might have opened a serious of medical decisions difficult for Ryan and I to have handled.

On March 30th, I went in for the routine five month baby body scan ultrasound. This is the moment I wish I could change. To go back to this scan, to see my lovely Lily flit around, and have nothing wrong with her or me. Instead, I lay on the table in panic as my ob/gyn and technician scrambled to determine why there was no heartbeat. How I wish I could take away those moments. Ryan was just as shocked.

Thursday we spent with specialists, trying to determine what had gone wrong. Another ultrasound found nothing. We couldn't tell if she was a boy or girl because of the placement of one foot, but we did get several other pictures of our sweetheart. She was ten inches long, and passed away holding her other foot to her mouth, as if sucking on her toes.

We also had an amniocentesis to determine if she'd had any genetic abnormalities. The one moment of levity that day was Ryan's blood test, in conjunction with the amniocentisis. It had been a stressful day, and he hadn't eaten in hours. They drew one vial of blood, and he almost passed out. They had to bring him crackers and juice, and he was sweating so bad, they had to put a wet cloth on his forehead and wipe the sweat from the arms of his chair. While I was still laughing, the technician brought a plastic bag containing 19 vials of blood to be drawn from me. (Since that day, I've probably had blood drawn at least 200 times, yet I still laugh at Ryan's failed attempt to be tough.)

A counselor also met with us to arrange the procedure to have Lily removed. We were told the safest place to have the procedure was a "a clinic" because they have the most experience. This blog is not the venue for passing judgment on pro-choice/life, but I will say it was the wrong place for my family to be for this heart-wrenching experience.

My parents arrived Friday morning to provide support, and we went for Part 1 of the procedure that afternoon. To enter the brick clinic, we had to receive clearance from bouncers. Check-in was on the second story, behind bullet-proof glass. Given my circumstances, the staff was kind enough to provide my family with a private consultation room. I had blood samples taken, which came back worrisome. The baby appeared to be poisoning my blood, decreasing my ability to clot. The doctor told me my blood counts would be rechecked the following morning, pre Part 2.

We arrived the following morning to a line of protestors, waving signs with graphic depictions of lost babies. Ryan dropped my dad and I off at the door, so we wouldn't have to walk along the line (Mom was at home with Katelyn.). A woman tried to hand me a pro-life brochure. I said to her, "I hardly need that. I have a stillborn." She apologized. Once inside, my dad asked why I hadn't just ignored her. I needed her compassion. I needed someone out there to know this wasn't what I wanted.

The lobby upstairs was bigger and more crowded than the DMV. Saturday is their busiest day. Those women were giving up what I wanted so badly. Again, the staff took us to a private consultation room, and a technician took my blood. My blood levels had worsened overnight.

That morning, for the first time, a doctor hinted there might be something more wrong with me than the baby affecting my blood. I was sent down stairs, where the procedure would happen, but warned I might be moved to the nearby ER because of my bleeding out risk. The room contained a row of lockers for street clothes, a row of recovery beds, and a row of women waiting their turns. By this point, I was sobbing- devastated I had lost my baby and terrified by the doctor's hint that there might be something more wrong with me.

I was given a pill to speed up the contractions that caused chills and nauseau. The procedure should have been done within the hour, but it didn't happen for another four. The doctor came to the prep room and said they'd decided to move me to the ER, so that they could have blood transfusions on hand in case I bled out. Still, the thinking was the baby was hurting me, thus the baby needed to be removed ASAP, despite the risk of the procedure.

It was several harrowing hours at the the ER before I was moved to the OR, during which I progressed to full-labor. I couldn't have an epidural because of the bleeding risk. Let me take a moment to say that Morphine is the most pointless, ineffective drug I have ever been given. By the time I was wheeled to the OR, I was begging to be put to sleep. I think my exact words were: "I CONSENNNNT!"

When I woke, I felt relief. My mom was by my side. They hadn't needed to give me a transfusion, and our healing process could begin. The doctor told me our baby had been a she. A little girl who should have become Katelyn's best friend.

I was kept at the hospital overnight for monitoring. Around 2am Sunday morning, I woke with the pain in my left side, and my face had begun to swell. No one had an explanation for the swelling face, but the medical staff told me to drink lots of water to flush the kidney stone. The hematologist retested my blood and cleared me to go home. We have not yet received this report, and are wondering if he missed something.

The swelling in the face worsened during the week, and the side pain didn't go away. By Thursday morning, April 6th, the pain in my side was so bad, I lay in bed, howling until it was late enough for us to drop off Katelyn at Early Bird day care and get me to the ER for pain management. Now that Lily was gone, they could finally do the catscan. And the history of the complications from the procedure over the weekend led the ER to do more detailed blood testing.

Shortly later, I was told there were abnormalities with my blood. I was moved from the ER to long-term care. Three hours later, a hematologist told me my symptoms indicated I had Leukemia and would need a bone marrow test to confirm. The aching in the ribs (the catscan had shown nothing wrong with the kidney) and face were the result of flat bones releasing the immature white blood cells into my blood stream.

Friday, April 7th, I was moved to this bigger hospital, with my new diagnosis, where I've been since. That week, the amnioscentisis came back clean. It had been my Leukemia that had hurt Lily.

My ob/gyn thinks the events that unfolded around Lily's passing saved my life. I wish that made the loss of her hurt less. I have seen Katelyn four times since April 6th. Ryan says that someday when she is old enough to understand, she will look up to me for what I have endured, and thank Lily for giving her a mom. Right now, her simply wanting to hug me like she used to would be enough.

On a bright note, the head catscan came back clean- no bleading. It remains unclear when I will be able to leave here. Normally the main driver is a recovered white blood cell count, but all my levels need to be back to normal, given the clotting in the liver and bleeding in the lung I have had. In addition to the ATRA chemo drug, I am still taking a steroid to reduce the bleeding in the lung and a blood thinner (Heparin) to prevent further clots, such as in the liver.

Once I am out of here, the next phase of the treatment will be daily IV injections of arsenic. This will mean an hour in the hospital a day, but at least I will be back at home, rebuilding my relationship with Katelyn. The staff here says I am beginning to look better. This is good, but I feel scared and confused. It feels safe in here, constantly being monitored, yet obviously I want to be back at the house, back to normal. I want this to have never happened to me. I want to be having a baby August 14th. I want to know "Why Us?"