My Story - Down

Picture of a swing at sunset

1Pe 5:7 Casting all your care upon him; for he careth for you.

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My Story



Down



Snow fell softly outside the parking garage where I stood in my hospital gown, matching pants and black boots. A siren approached and was silenced as the ambulance pulled into the emergency entrance 3 floors below. I lit up a cigarette and inhaled deeply. My fingers fidgeted with the central line going from my neck to the IV pump. I watched the fluid in the bags drip, drip, drip into my line. The front of the IV pump was lit up and the word "CHEMOTHERAPY" repeatedly scrolled across the display. I must be insane, I thought as I took another pull from the cigarette. This was the lowest point I had been mentally since I was diagnosed nearly a year and a half earlier. Two weeks before I had been released from the hospital. I had spent those two weeks trying to get one of our rental houses ready to rent. I was pretty weak from the disease and the treatments I had been receiving. I was unable to work for more than an hour or so at a time. The night before returning to the hospital I had worked late into the night trying to finish the painting on the rental. I had failed to finish. The following morning I had gotten up early in preparation for the 3 and a half hour drive back to the hospital. My wife and I said goodbye on the back deck. We were both on the verge of tears and her eyes searched mine intently. Our lives had been in upheaval for the past year and a half. All of life's little pressures were converging on us. The previous month had been very hard on her, as she had managed our household alone for the most part. I had felt that she was nearing her breaking point. Her eyes searched mine for some sign of hope as we said goodbye. I wasn't sure that I could honestly give her the hope she desired. The walk to the Jeep seemed unusually long and I felt her eyes on my back as I took each step. She seemed to be pleading with me for some sort of reassurance, a reassurance that I wasn't capable of giving. Something about the situation seemed very final as I pulled out of the driveway. I made the drive back to the hospital expecting to start the final stage of a stem cell transplant. I met with the oncologist and he explained that the previous chemotherapy treatment had not reduced the cancer to the level desired to start the final stage of the transplant. Now I would undergo another treatment similar to the one I had just completed 2 weeks earlier. I would then be given another two-week rest period and then be back to try the transplant again.

Each round of chemotherapy had taken a toll on my body. I had continually felt weaker after each treatment. I could do less after each treatment. Now I would be hooked up to chemo again 24 hours a day for 4 days. I had long since reached my lifetime maximum dosage for some of the chemotherapy drugs that I was being given. The doctors were telling me that they were simply weighing the potential risk against the potential benefits of the drugs and that I had little to lose. I was a little fuzzy about that whole "do no harm" thing at that point. I was also taking some pretty serious drugs like Thalidomide. Something that I was taking was doing nerve damage. My left hand was numb. It felt like it had been injected with Lidocaine. My fingers continually had that "prickly" feeling that one gets when a limb "falls asleep". My legs and arms did "fall asleep" after only a minute or two of not being moved. I had tried to keep the effected limbs moving when this sensation had first started to occur. Now I didn't bother until it became painful.

The disease continually took its toll. The lymph nodes around the blood vessels were swollen and restricted the blood flow to my brain. This made me tired and had been an increasing problem for sometime. The knowledge that death was knocking was also taking a toll. I had not expected the transplant to cure my disease, but I had thought that it would give me more time with my wife. This latest news had me thinking that perhaps this treatment would actually shorten my life because of the physical toll it was taking. I had that sinking feeling in the pit of my stomach, that in my greed to hold on a little while longer, I had made things worse. There was also an economic price to be paid. I had good insurance, but even so this type of treatment was expensive. The New Year had brought a renewal of the deductible and coinsurance due. All of these things had combined to deal a blow that I was finding hard to deal with. It would have been much tougher without the support and assistance of friends and family. A few days before my return to the hospital an unexpected check had arrived from my mother. It was enough to cover the deductible and coinsurance.

I hated borrowing money, but was grateful for the help because it had been a couple of months since I had any real income. I stood there in that parking garage smoking and pondering the situation. I was disappointed in myself for continuing to smoke. I also knew that smoking was doing far less damage to my body at this point than the chemotherapy was. It appeared to me at that point that I would probably lose my so-called "battle with cancer" in the next few months. Smoking certainly wasn't going to kill me that fast. I had quit smoking before and knew how hard it was going to be. I simply decided that quitting wasn't worth it under these circumstances. Maybe this was a twisted rationalization I made in order to justify another nicotine fix. Looking back, I don't think so. It was a way of removing one stressor that would have little affect on my physical health. I decided to put "quitting smoking" on the back burner until my life expectancy was a little less tenuous. Making that conscious decision gave me a sense of control that had been lacking, but still there was something missing and I didn't know what it was. I just knew that I felt very much alone, which was abnormal for me. I was rarely if ever lonely, even with no one around.

I returned to my room and life in the hospital resumed at its monotonous pace. I marked time by the delivery of meals and medication, which took place at specified times. Medications came morning and night. Blood draws every morning at four thirty. I passed the hours by playing games online and eventually lost track of the days as "chemo brain" fogged normal thought processes. I took a walk every day to get my nicotine fix, but no longer walked for exercise. I found myself falling into a depression and couldn't pinpoint the reason. My wife made the trip to see me every few days and we talked nightly on the phone. I still felt very much alone. I finished the chemotherapy treatments and my blood counts fell as expected. I knew when my counts had bottomed out before the nurses drew the blood for the test. My body was screaming it at me. I was shaky, and jittery. My vision would go black and I would get light headed every time I sat up. I would wait for everything to clear then stand slowly and hold on to the bed rail, as it would happen again. I was weak to the point that each step felt like a chore. Everything had become very much routine, yet I felt more alone than ever. Something was missing, but I couldn't put my finger on what it was. I would like to think that if I hadn't had "chemo brain" I would have figured out what was missing sooner. The truth is, I probably wouldn't have. My blood counts were confirmed to be very low when the test results came back. The Doctors wait until the counts recover for two days before confirming that they have indeed bottomed out. I was getting impatient though. I knew my counts would begin climbing over the next few days and I wanted to get out of the hospital. I told the Doctor as much and packed up my things, got dressed and stood in the open doorway to my room. I couldn't stand for more than a couple of minutes at a time. I placed a chair behind the door and rested frequently, but made my presence known at the door. The doctor finally came back and told me I would not be able to leave that day. He said he needed to see my counts improve substantially for two days in a row. I was disappointed to say the least. My wife came to see me the next day. I told her that I was ready to go but they wouldn't let me. My white blood count had risen by .01. Not nearly enough to qualify as substantial. I suggested that we go see my Oncologist to see if he would "spring me". She reluctantly agreed. We walked across the hospital to the Oncologists office. I didn't have an appointment but he agreed to see me. We sat in the little conference room hopefully waiting. All hope was lost the instant he entered the room. He entered the room in full tongue lashing mode. He basically told me that I was being impatient and should be thanking God that I wasn't in the same condition as the other patients undergoing the same treatments. The instant he said "thanking God" I knew what was missing for me. I had been going through the motions and praying daily, but my heart had not been in it for about 2 weeks. I promised not to ask to leave again and left his office humbled and ashamed but calm. Calm, because I knew what I needed to do to "get right". That night I opened life's instruction book for the first time in a week or so and read and offered heartfelt prayers late into the night. The following morning I was on my way home.



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