When I went for my first dose of chemo in the infusion room, I wasn't exactly sure what to expect. First, they talked to me. They were going to start an I.V. for each round of chemo, as long as my veins cooperated. They could only use my left arm, because after having lymph nodes removed from my right underarm, I can never again have a blood pressure cuff or a needle on my right arm. They couldn't put in a permanent port, because I'd had a staph infection, and it could seed itself in the port, so the hope was that my veins would cooperate. They were going to start an I.V., then they would inject a steroid before starting the first of three chemo medications. They would finish with a bag of saline to clean the vein, because the chemo drugs were so caustic. The first drug, in fact, which looked just like cherry Kool Aid, came in two large syringes. The oncology nurse had to inject them into my I.V. little by little, because if we somehow came out of the vein, it would cause necrosis (death of every cell it touched). The other two chemo drugs would be hung in I.V. bags. I was warned of nausea, and had three different anti-nausea drugs at home. I learned my hair would start falling out about fourteen days after chemo. I could develop sores in my mouth, and Popsicles were recommended. And then they explained to me about my neutrophil count.
The white blood cells fuel the immune system. Within the white cells is a specific immune generating cell called the neutrophil. And chemotherapy kills these cells. I learned that 7-10 days after each infusion, my white count would dip, called the nadir. So, seven days after each infusion, I would have my blood drawn to ensure that my white count was within an acceptable range. The normal neutrophil count in a healthy person is 1500+. If my neutrophil count dropped below 1000, I would be considered neutropenic. I was given seven shots, to inject over the next seven days at home, to stimulate my bone marrow to produce white cells, in the hopes of preventing neutropenia. My oncology nurse assured me that she had seen people with a neutrophil count of zero, who didn't even know until their blood was drawn. She had personally never seen anyone suffer any ill effects from neutropenia, so I shouldn't worry. Then I was told to stay away from sick people (ha ha - I had two small children) and to notify my doctor immediately if I developed any symptoms of illness.
And so I had chemo. It went fine, and I really felt nothing, initially. My husband drove me there, and sat with me during my infusion, then we went to a restaurant for lunch after I finished (starting at 9 A.M. and lasting about five hours). Then I went home and waited.
Finally, in the early evening it hit ... like a rock. My stomach started to protest, and I regretted putting food in my mouth. I took all the anti-nausea medication, which didn't exactly end the nausea, but kept it at bay, making it bearable somehow. After that first round of chemo, I felt mighty sick, but never actually threw up, so I guess it accomplished its purpose. I had chemo on Friday, and that evening I crawled into bed and stayed there for three days. I couldn't read, I couldn't watch T.V., I simply lay on my side, and endured. It was horrible, and hard to describe. It wasn't exactly like the flu, or strep, or any other illness, but sort of like all of them at once. It was as if my body was using every ounce of energy fighting the poison that was coursing through my veins, and there was simply none left to fuel any other activity. I almost stopped thinking. I was aware of the sheets, and how they felt against my skin. I was aware of the breeze blowing through the open windows. But my mind was like an empty room, with no thoughts at all. I just lay there, waiting for the assault to end.
And it did. I woke Monday morning feeling like the worst was over, except for having a sore throat. I called my doctor's office, to let them know (as I'd been instructed), and tried to keep the sarcasm out of my answer when the nurse asked if I'd been 'exposed' to anything. I just said, 'uh ... yeah. I have two kids who are with other kids all the time - I've probably been 'exposed' to everything.' So they started me on Cipromycin, a broad spectrum antibiotic and told me to watch my temperature. If it hit 100.8, I was to call back.
Thursday, I started to feel truly ill. I knew I was entering the nadir, but I didn't really understand what that meant for my body. Around 7 P.M. Thursday evening, my temp hit 100.8, and I called the on-call nurse. After consulting with the on-call oncologist, she said I had to come into the E.R. They put me in the psychiatric room, with a closed door, no phone, no T.V., nothing I could use to attempt suicide. This was the only room in the E.R. with an actual closing door, and I had to be separated from everyone because of my compromised immune system. They ran tests and drew blood, and after a while, the doc told me they found no known pathogens, and it was 'extremely unlikely' my blood count would be low enough after one round of chemo to keep me. I would most likely go home on oral antibiotics, which is where I started.
I, of course, believed him. I shouldn't have believed him, but I did. The moment he said 'extremely unlikely' I should have asked him to get my room ready. And when he came in, a while later, with a sheepish look on his face, I pointed my finger at him and said, 'you SAID extremely unlikely.' He was sorry, he couldn't believe how low my blood counts were, I was already sick and the diagnosis was neutropenic fever. Not only did I have to be admitted to the hospital, I was under neutropenic restrictions - I couldn't have any fresh fruit or flowers in my room (because of the bacteria on all living things) and no visitors unless they had on masks, gloves, and gowns. I didn't even feel that bad - my throat hurt and while at the E.R. a slight cough had started, but it wasn't so bad, so I lobbied him to let me go home. No go - my neutrophil count was 40, and I had to stay. (By 5 A.M., it dropped to 30, and I was so sick I felt like I might die, so I have to admit they did the right thing.)
I was checked into the medical floor at 1 A.M. Friday. The nurse let me 'get settled' (code words for take off your clothes and put on a hideous gown, open to the back, please), and then she came in to review the drugs I was on to make sure her list was accurate. When she started to read the names, the tears welled up in my eyes, and I totally lost it. I couldn't hold back the emotion - right then I just felt so amazingly sorry for myself. I put my hand up, palm facing her, and said, 'give me a minute of self-pity, and then I'll talk to you.' She sat on the bed, said she understood - I'd been through an awful lot, and she put her arm around me while I cried out tears of frustration. I shouldn't have had positive lymph nodes in the first place, I shouldn't have had a staph infection, I shouldn't have lost my implants, I shouldn't have been allergic to common antibiotics, and I shouldn't be here! It was my fourth hospitalization in two months, I'd had three surgeries, and it was my second infection. I felt abused.
When the nurse finished with me, and I was alone in my dark room (with the door closed because I was in medical isolation), I prayed - well .... some might have called it ranting, but I was directing it toward God, so it was prayer. Did He know what was going on? Did He even care? I had hundreds of people praying for me, did He happen to hear them? I cried and went on until I was spent, then I tried to quiet my spirit.
And I asked God to forgive me because I knew I was behaving like a brat having a tantrum. And I asked Him what He had for me, because I needed something from Him. And I heard ... nothing. Silence. Please, God - I need something from You. I don't think my faith is strong enough if You don't reassure me that You're going to fix this. And I got ... nothing. So I stilled myself, shut my eyes, pushed away the thoughts that were crowding my mind - and I waited. I wasn't exactly in the 'right place' spiritually. I was upset, and felt justified at being so. But I believed if I was listening, He would speak. And He did. In the stillness of that dark room, I felt the quietest whisper in my heart, a gentle stirring in my mind.
Do you trust Me?
My eyes literally flew open and I said, 'what?!?' (Thankfully, I was alone). Do I trust You? This was not at all what I was looking for. But as this arrow hit the center of my heart, clearly pointing to the crux of the whole matter, I recognized the simple truth of my answer and all its ramifications.
No. I don't trust You. If I did, I wouldn't be having a fit because things weren't going as I planned. If I trusted You, I would believe in your goodness and love, and I wouldn't be questioning Your actions. I was reminded of Jesus with the woman at the well. She asked a specific question, and Jesus ignored it, asking one of His own. And in doing so, He hit the core of her problems, figuratively ripping a scab off a festering wound, so it could heal. (This story is in John 4). I, who had spoken through this entire ordeal of my faith, didn't trust my Father. What a heartbreaking truth. And I couldn't do it - I couldn't just force myself to start trusting, simply because I knew I was supposed to.
I told the Lord that I'd try. I asked Him to help me - to show me what I needed to do to trust, because I wanted to but just didn't know how to get there. And for the time being, I let it go, and mercifully - as I faced one of the worst days (physically speaking) of my entire cancer ordeal, I slept.
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