Archive for November 2009
Prayers were answered yesterday morning when members of my physician/nurse practitioner team decided to re-adjust the amount of one of my chemo drugs. They felt the level of pain I described occurring after the first infusion, especially as it originated in my back, indicated that my kidneys were under distress. They also increased the intensity of the pain meds so I will not have to take as many pills to experience the same level of comfort, thus decreasing the added stress on my kidneys with the over-digestion of acetaminophen (Tylenol) …
I grew up believing that my doctor’s opinion were always correct, and that it was disrespectful to comment or question his advice. As an adult I’ve learned, sometimes the hard way, that I must serve as the most important member of my personal healthcare team. I’ve learned that it’s okay to disagree with my doctor’s advice, and to seek another opinion, or physician, if I deem it necessary for my own continued good health. Now I come to appointments questions written down, poised to write down the answers I receive, understanding my right to know what’s happening within my own body.
Extensive reading, research and interviews have helped me unveil some of the mystery behind healing. While my own life experiences have taught me that members of the healthcare profession are humans just like the rest of us. Which means they have families, their own illnesses, financial uncertainties, experiences and crises as do we. As patients we have the right to communicate our true worries, triumphs and concerns – to sometimes make ourselves loud and obnoxious so that we are heard and our needs met …
Much of diagnostic medicine is based upon hypotheses, educated guesses about what should or should not happen to you, based on what did or did not happen to the last patient. So it’s critical that patients communicate honestly with their medical teams. In turn, a knowledgeable patient is a wise patient, and wise patients follow their knowledgeable physicians’ directions …
I am someone who looks for God in ordinary, every day experiences and crises, believing as I do that the sum total of our every day experiences and crises constitute the totality and legacy of our individual and communal lives. Each day is built upon the strength of the last; likewise, each week, month, year, and decade acts as a foundation for the next and the whole becomes the legacy we leave behind.
Bishop T.D. Jakes regularly counsels his parishioners at The Potter’s House in Dallas that “God is good all the time, and all the time, God is good.”
I feel good right now … I’ll keep you posted.
It’s been several weeks, a couple of days before my first chemotherapy infusion (Friday, October 23, 2009), since I last posted on Tuesday, October 20. I began feeling the side effects of the drugs within 36 hours … mostly muscle pains, spasms, and cramps which got increasing worse as the days progressed. That Wednesday my sister, baby niece, elderly aunt, and brother-in-law arrived in town for a surprise visit. Recovering from surgery on September 15, I was more active during their 3-day visit than I had been for weeks. Initially, I thought my back was aching because I had been bending over with and carrying the baby.
However, throughout the week I began to feel increasingly worse even though I was taking the meds as prescribed, they weren’t breaking through the pain. I’ve since found out that my chemo nurses have standing orders to hydrate me with saline and administer anti-nausea meds whenever I show up at the cancer center asking for them. I know better now, but by the Thursday evening following the first infusion I was getting sick to my stomach and experiencing severe diarrhea. After I had no more to give, my stomach continued to spasm, and I couldn’t make it stop as everything came back up and then nothing came up.
I began to panic. I could feel myself screeching towards a pain crash; the level was increasing with the passing hours. All I could do was moan and cry out, while my dear husband nursed and cleaned up after me. I was physically and mentally exhausted. My head was ringing. Nothing was staying down. I felt dehydrated. I was sick everywhere, but mostly in my stomach and back and the entire middle of my body.
I remembered that the nurses at the cancer center had warned me not to allow myself to remain sick without telling them, and if it got bad after hours, to take myself to the emergency room. I had already called and talked to my doctor, and had done what she’d told me to do without getting much relief. I just couldn’t break through the pain, even as I felt myself falling off the cliff. In March I turned 50; in April I experienced a mild heart attack, and I have high blood pressure. The pain was so bad, I was afraid I might have another heart attack. Around 1 a.m. I dialed 911 and shoved my cell phone into my husband’s hand, demanding that we call for an ambulance.
The ambulance ride was cold and sterile, the attendants mechanical and flippant. Once inside, my complaints of being cold (they took me out in the night air in my flannel gown) were met with the tossing of a sterile airplane type blanket across my legs. As he began taking my vitals, which were thankfully stable, it became more apparent to me that with me was not where he wanted to be. When he climbed up front, leaving me alone to shiver and slide around on the narrow bed, I focused on my breathing and prayed to God to ease the pain.
It’s been my observation that vocal patients tend to make healthcare workers nervous and jittery. I, however, am not one of those patients that suffer pain in silence. I am very vocal, and once inside the emergency room, I was moaning, crying, and praying out loud.
“ On a scale of 1 to 10 with 10 being the most, how much pain are you in?”
I had insisted on passing up a closer hospital in order to be taken to the hospital I’d just recently been admitted into as a surgical patient. It took several attempts on our part to explain to the emergency room nurses, without being so matter-of-fact, that no, I was not a junky off the street. I was one of their cancer patients in need of emergency assistance.
Finally something clicked – probably my records popping up on their computers – and their bedside manner became warmer and more comforting. (Which brings to mind an entirely different train of thought about how substance abusers are ostracized, but I’ll leave that for another essay.) They gave me anti-nausea and morphine for the pain and around 4 on Friday morning sent me home with instructions to keep my cancer center appointment scheduled for later in the day.
Back at home I managed to get a couple of hours sleep before my stomach woke me up. I needed to eat and re-hydrate myself, but I was afraid I would get sick again. I judged that I was at that point at level 8 on the nurses’ pain scale. While I waited for my husband to wake up so we could keep my appointment, I decided that chemotherapy was not for me, that I would just have to roll the dice as to my odds of a recurrence. I began practicing my speech, how and what I would say to my medical oncologist when I announced to her that I wanted no more of chemo.
Finally at the center, after a liter of saline, more anti-nausea and pain meds, I was out of pain, hungry, and feeling more normal. The chemotherapy nurses, whom I’ve begun to refer to as my Nightingales, explained that the first cycle is always experimental as no one knows until side affects occur, or don’t, how a patient will respond to chemo. I was to remain hydrated and as full as possible. Now that I know how my body is likely to respond, I am to stay ahead of the pain by remaining heavily medicated. This was not the time to be stoic and heroic about pain endurance. In response to my un-asked question about possible addiction, I was told that as long as the medicine was responding to pain, I would be okay. Patients run into trouble when they continue taking the meds after the reason for them has passed.
My husband and I have added another word to our lexicon: “nadir,” a noun defined as the lowest possible point. During the first week after infusion, I felt like shit as I slid closer and closer toward my nadir, my lowest point, which I crashed into on that following Thursday night. The second week I spent recovering, while the last week before starting all over was my best of the three.
So, here I am again at the Tuesday before my second cycle. Tomorrow I’ll write on my wall and post photos of myself in the chemo chair. Pray with me for a better outcome this time around.