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.
Thursday, June 24, 2010
Thursday, June 3, 2010
Something Called Faith - May, 2007
When I read back through my blog entries, I think, "Oh, my goodness, the poor girl." For a split instant, it seems like I'm reading about someone else because I feel so distanced from it all. I wonder how I was possibly strong enough to endure it all, and come out on the other side, intact. And I am at a loss as to how someone with no faith in anything outside of themselves can possibly survive illness, death, or any other personal disaster, without bitterness taking root and eventually taking over their life. It is my faith that brought me smoothly through, and not just faith, but an actual relational experience with God, my Father.
There were a few times during my cancer journey where I was very sick - so sick I couldn't get out of bed. During those times, the bubble of my world would slowly begin to constrict, shrinking as I felt worse. As I lay in my bed, it seemed like my world ended at the walls of my house. I couldn't concern myself with anything outside of my own family, but I could still feel connected to them as they went about their business in our home. As my pain or nausea would intensify, my world would shrink to just my bedroom. I would become so focused on dealing with the horrible symptoms, that I no longer heard my children playing in the yard, or the phone ringing. But if those I loved came into my room, into that bubble, we could still touch and connect. My oldest daughter could sit on the bed and read with me (she, actually reading; I, holding an open book face down on my stomach as my eyes drifted shut). Or I could play a game in my bed with my little one - completely disregarding the rules because she was two, and I didn't have the energy to explain to her how to play. Or my husband could lean with me against the pillows, holding my hand, saying nothing.
But then, when I was hospitalized, removed from the familiarities of home, my world would diminish until it ended at my own skin. I remember lying in a hospital bed, eyes closed, in a fetal position, hearing people talk to me, or talk around me. But I just lay there, hearing a response in my own head, but unable to make my mouth move to actually reply to them. And in that moment, I would pull myself into the farthest corner of my mind, willing my bubble to shrink around me, insulating me from the physical agony. This only happened two or three times - at my worst moments. And inside that pinpoint of existence, I discovered something quite miraculous. The God of the universe, Creator God - larger than all physical existence, fit into that tiny space. I was not all alone - He and I were alone, together.
Recently on facebook, a man commented on a post and said this: "a 'god' has nothing to do with cancer or any disease. If 'god' is your strength? Then so be it. But for me and many others? Breast and other cancer is in the hands of early detection... and the Dr's." The fact that he feels this way is so sad to me. God has everything to do with cancer and disease ... if ... you put your faith in Him, and ... if ... you have relationship with Him. He is not the author of disease - please don't get me wrong. But He is there. There is no where that God isn't. I came to the end of myself, my very darkest moment, where my entire bubble was filled with pain, and infection, and cancer, and God was in it, wrapped around it, completely in control of it, having everything to do with it. His Word says, "Where can I go from Thy Spirit? Or where can I flee from Thy presence? If I ascend to heaven, Thou art there; if I make my bed in Sheol (the place of the dead), behold, Thou art there. If I take the wings of the dawn, if I dwell in the remotest part of the sea, even there Thy hand will lead me, and Thy right hand will lay hold of me."
God is there - in the most awful circumstance, if we will only see Him. He was there when I came out of surgery, having lost one of my implants to staph infection, and had an allergic reaction in the recovery room to the antibiotic in my I.V. He was there when I was sent home, and woke up one morning with my neck, chest and shoulders covered in hives - having an allergic reaction to antibiotic number two. My doctor told me only 2-8% of people who are allergic to one family of antibiotics, will be allergic to another family. And since I was already allergic to penicillin, I was now allergic to three families of antibiotics, which rarely happens.
God was there when my oncologist tried to explain to me how mind-boggling my pathology report was to all the doctors who'd seen it. Normally, breast cancer attains some size (roughly two centimeters in diameter) before it 'learns' to spread. This takes time. A woman can have a tumor growing for years even, and have lymph nodes that are free of cancer. In my case, the breast tissue removed during my cancer surgery had no infiltrating cancer cells in it. All the infiltrating cells, and a microscopically small amount at that, were removed during my breast biopsy four weeks earlier. My cancer should have been Stage 0; it was detected at the earliest possible moment. Yet I had an 8 mm tumor deposit in my sentinel lymph node.
In my naivety, I asked if maybe the cancer started in my lymph node, and was just spreading into the breast. Uhhh... No. Not possible. Three different pathologists had reviewed my slides from the O.R. because the results were so baffling. The Chief of Pathology had reviewed my slides to be sure no mistake was being made. They were sure of their results, bizarre as they were. I had no infiltrating cells remaining in the breast (only DCIS cells, which I explain in an earlier post), but I had infiltrating cells in my lymph nodes. In my 'cancer innocence' I still didn't get what this meant, so my doctor spelled it out for me. My cancer was moving like a brush fire, and I needed to start chemo without delay.
God was with me there. Instead of fear, I felt an absolute certainty that He had saved my life. If I had waited to go to my doctor until I myself had discovered my breast lump, it might have been too late.
He was with me when, a few days later, I noticed a red patch on my right breast and chose to have the second implant removed instead of risking an infection during chemo. Although it was not infected, the wound cavity was filled with fluid, called a seroma - a breeding ground for infection. And He was with me when I finally made it to the infusion room, for my first round of chemo. Even after the amazingly bumpy road I had traveled thus far, I felt only peace and optimism. The nurse took my blood pressure and started to laugh. I had the lowest blood pressure she had ever taken in the infusion room in eight years as an oncology nurse (119/72 for anyone interested). She told me a 'normal' pressure for them was 150/90, because patients facing chemo are scared, which raises the blood pressure. So I simply told her the truth. "I'm not afraid. Should I be?" No, no, no - it was great that I didn't feel scared. A good attitude will go a long way towards making you well, she told me. But it wasn't a good attitude. It was something called faith.
There were a few times during my cancer journey where I was very sick - so sick I couldn't get out of bed. During those times, the bubble of my world would slowly begin to constrict, shrinking as I felt worse. As I lay in my bed, it seemed like my world ended at the walls of my house. I couldn't concern myself with anything outside of my own family, but I could still feel connected to them as they went about their business in our home. As my pain or nausea would intensify, my world would shrink to just my bedroom. I would become so focused on dealing with the horrible symptoms, that I no longer heard my children playing in the yard, or the phone ringing. But if those I loved came into my room, into that bubble, we could still touch and connect. My oldest daughter could sit on the bed and read with me (she, actually reading; I, holding an open book face down on my stomach as my eyes drifted shut). Or I could play a game in my bed with my little one - completely disregarding the rules because she was two, and I didn't have the energy to explain to her how to play. Or my husband could lean with me against the pillows, holding my hand, saying nothing.
But then, when I was hospitalized, removed from the familiarities of home, my world would diminish until it ended at my own skin. I remember lying in a hospital bed, eyes closed, in a fetal position, hearing people talk to me, or talk around me. But I just lay there, hearing a response in my own head, but unable to make my mouth move to actually reply to them. And in that moment, I would pull myself into the farthest corner of my mind, willing my bubble to shrink around me, insulating me from the physical agony. This only happened two or three times - at my worst moments. And inside that pinpoint of existence, I discovered something quite miraculous. The God of the universe, Creator God - larger than all physical existence, fit into that tiny space. I was not all alone - He and I were alone, together.
Recently on facebook, a man commented on a post and said this: "a 'god' has nothing to do with cancer or any disease. If 'god' is your strength? Then so be it. But for me and many others? Breast and other cancer is in the hands of early detection... and the Dr's." The fact that he feels this way is so sad to me. God has everything to do with cancer and disease ... if ... you put your faith in Him, and ... if ... you have relationship with Him. He is not the author of disease - please don't get me wrong. But He is there. There is no where that God isn't. I came to the end of myself, my very darkest moment, where my entire bubble was filled with pain, and infection, and cancer, and God was in it, wrapped around it, completely in control of it, having everything to do with it. His Word says, "Where can I go from Thy Spirit? Or where can I flee from Thy presence? If I ascend to heaven, Thou art there; if I make my bed in Sheol (the place of the dead), behold, Thou art there. If I take the wings of the dawn, if I dwell in the remotest part of the sea, even there Thy hand will lead me, and Thy right hand will lay hold of me."
God is there - in the most awful circumstance, if we will only see Him. He was there when I came out of surgery, having lost one of my implants to staph infection, and had an allergic reaction in the recovery room to the antibiotic in my I.V. He was there when I was sent home, and woke up one morning with my neck, chest and shoulders covered in hives - having an allergic reaction to antibiotic number two. My doctor told me only 2-8% of people who are allergic to one family of antibiotics, will be allergic to another family. And since I was already allergic to penicillin, I was now allergic to three families of antibiotics, which rarely happens.
God was there when my oncologist tried to explain to me how mind-boggling my pathology report was to all the doctors who'd seen it. Normally, breast cancer attains some size (roughly two centimeters in diameter) before it 'learns' to spread. This takes time. A woman can have a tumor growing for years even, and have lymph nodes that are free of cancer. In my case, the breast tissue removed during my cancer surgery had no infiltrating cancer cells in it. All the infiltrating cells, and a microscopically small amount at that, were removed during my breast biopsy four weeks earlier. My cancer should have been Stage 0; it was detected at the earliest possible moment. Yet I had an 8 mm tumor deposit in my sentinel lymph node.
In my naivety, I asked if maybe the cancer started in my lymph node, and was just spreading into the breast. Uhhh... No. Not possible. Three different pathologists had reviewed my slides from the O.R. because the results were so baffling. The Chief of Pathology had reviewed my slides to be sure no mistake was being made. They were sure of their results, bizarre as they were. I had no infiltrating cells remaining in the breast (only DCIS cells, which I explain in an earlier post), but I had infiltrating cells in my lymph nodes. In my 'cancer innocence' I still didn't get what this meant, so my doctor spelled it out for me. My cancer was moving like a brush fire, and I needed to start chemo without delay.
God was with me there. Instead of fear, I felt an absolute certainty that He had saved my life. If I had waited to go to my doctor until I myself had discovered my breast lump, it might have been too late.
He was with me when, a few days later, I noticed a red patch on my right breast and chose to have the second implant removed instead of risking an infection during chemo. Although it was not infected, the wound cavity was filled with fluid, called a seroma - a breeding ground for infection. And He was with me when I finally made it to the infusion room, for my first round of chemo. Even after the amazingly bumpy road I had traveled thus far, I felt only peace and optimism. The nurse took my blood pressure and started to laugh. I had the lowest blood pressure she had ever taken in the infusion room in eight years as an oncology nurse (119/72 for anyone interested). She told me a 'normal' pressure for them was 150/90, because patients facing chemo are scared, which raises the blood pressure. So I simply told her the truth. "I'm not afraid. Should I be?" No, no, no - it was great that I didn't feel scared. A good attitude will go a long way towards making you well, she told me. But it wasn't a good attitude. It was something called faith.
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