Search the Community
Showing results for tags 'infusion'.
The search index is currently processing. Current results may not be complete.
Except I was not sitting in the audience for "The Price Is Right" when I heard my name called. Nor was I needing to guess the cost of my infusion with my treatment that day contingent on my guess not exceeding the "actual retail price." And neither were there any of "Barker's Beauties" to wave their hands and showcase what items I would be attempting to price right. No. There were only multiple oncology nurses standing in front of the Infusion Center's entry door calling out the names of the next patients lucky enough to begin their treatment. It wasn't exactly "Plinko," but once inside the Center, the fun, such as it is, really begins. At least that's the way the activity appeared to me. The preceding day was July 4th so the Center was closed forcing those Thursday patients to be rescheduled to either Wednesday or Friday. As a result, the waiting area was particularly full with patients, along with their family and friends, all of whom are encouraged to attend. In the midst of this crowd, I sat and waited. We hadn't exactly been assigned numbers, but we were assigned oncology nurses and therefore could only enter the Infusion Center with their assistance. Then, while all of us "waiters" looking at the entry door waiting for an oncology nurse to walk through and call our name, the door lock clicked open and out walked two oncology nurses. As soon as they cleared the door and entered the waiting area, they called out their respective patient's names (unfortunately not mine). Upon hearing their names, the two patients and nearly half a dozen of their supporters got up and moved eagerly toward the entry door. It reminded me of the beginning of "The Price Is Right" when three audience members' names are called in quick succession and implored to "Come On Down!" by George Gray (Johnny Olson, the original announcer, retired years ago) and officially become one of that day's contestants. However, once inside the Infusion Center, It's dead serious. Your life is at stake, maybe even at risk, depending upon your cancer/treatment, and at this point, you're not playing any more games (although occasionally, you may be guessing the price of things and wondering how it all gets calculated). So you slide into your Barcalounger, hold out your arm to have your barcoded wrist ban scanned and prepare for your hopefully, life-saving infusion, and don't smoke 'em, even if you got 'em. It's rare that you'll see your oncologist in the Center. Typically, they'll be seeing patients in examining rooms, performing surgery or rounding in local hospitals. But they're always a phone call away should the nurses need any additional instructions or clarification. Generally speaking, once inside the Center, all goes as anticipated for us patients: you're in, you're treated, you're out. And when you're out, new patients names are called and on and on it goes, just like "The Price Is Right," except the program doesn't end in an hour. And just like "The Price Is Right," where there are no shortage of audience members wanting to participate, at the Infusion Center, likewise, there seems not to be a shortage of patients wanting to be treated either. (Granted. it's not exactly the same thing, but you get my drift, I'm sure.) Cancer is not fun, nor funny, and an Infusion Center is not filled with anticipation of cash awards and magnificent trips. There is however, lots of empathy and understanding - from your support system and from staff as well. But it's the last place you want to be, unlike "The Price Is Right."
I've endured a total of 18 Taxol Carboplatin infusions in my treatment history. I'm told that is unusual for a change in recipe is often called for when turmors reoccur or return. The first 6 really don't count. They were understrength adjunct treatments administered once-per-week while I had conventional radiation. The last 12 were a nightmare. A recent conversation with one about to undergo chemo for the first time primed a recollection. His doctor asked him if he wanted a port. Mine did also and I declined. That was a mistake. I got to thinking about other lessons learned that might be helpful. Here they are in no particular order. 'Roid Rage - my infusion cycle started with steroids to block side effects during infusion. A total of 6 steroid pills were required every 6 hours starting 12 hours before each infusion session. Then the first bag of stuff infused was steroids. Two side effects resulted: enormous appetite and sleep deprivation. Plan on staying awake the evening after infusion and eating everything in the house. IV Attacks - if offered a port, take one. For me, the absolute worst part of infusion day was finding a vein. I used up nurses like interest accumulates on the national debt. The clinic had a three-try-change-nurse policy. Once, the CT scan technician had to be called upon because I used up every nurse in the place. Charting Side Effects - It took me a while to realize that life goes on after infusion. It would be nice to know when one might venture out to eat without experiencing violent nausea or lower GI distress, always embarrassing at fine eating establishments! Use your smart phone calendar or paper "cancer calendar" to record the day and time of onset and wane of each side effect. Mine were exactly on schedule. Nausea symptoms started the day following infusion but lasted only 24 hours. Joint pain started day 2 after infusion and lasted about a week but the first 3 days were almost unbearable. If I took the anti-nausea medication an hour or so before onset, my symptoms were reduced. The same applied to prescribed pain medication. My doc told me to start taking it 3 hours before symptoms started and it made living with joint pain easier. Managing Side Effects - besides knowing when the start and end time, here are techniques that worked for me. My oncologist prescribed Lidocaine patches and my wife wrapped them around my most painful joints using ace bandages to gain relief to allow me to sleep. Sometimes she's use flexible freeze packs and wrap them to the bottom of my feet to numb them against "taxol toes", again to facilitate sleep. My last infusion cycle was combined with the oral chemotherapy drug Tarcevia. It added diarrhea that laughed at Imodium. A Tarcevia survivor told me to start each day with a bowl of plain steamed rice for breakfast. It worked! Low Counts - Conventional chemo attacks fast growing cells and these include cancer cells but also red and white blood cells. You'll likely receive a blood test 2 days after infusion and if counts are low, will receive injections to boost production of red and white cells. These drugs were Procrit and Neulasta. Unfortunately, both cause joint and bone pain. As a lung cancer patient, you'll be susceptible to chest colds that can quickly become dangerous because of your low white count. Try and stay home during the second week after infusion to limit your exposure and avoid school aged children. My oncologist had me keep a supply of Levaquin on hand and I was to start the medication at the first sign of chest cold symptoms. Infusion Day - my session averaged 6 hours. I devoured the kitchen at breakfast because of hunger caused by my 12-hour 'roid rage but bring something to eat during your infusion. You will also find yourself getting up frequently and dragging the infusion pump to the bathroom. Dress warm, even in the summer. My wife would stay with me during the IV insertion battle, then I'd read or play solitaire on my smartphone. On the way home, we'd stop at Denny's and I'd eat several of their Grand Slam offerings.
The lights dim, the announcer’s introduction complete, now all the stand-up comedian needs to do is be funny. We’ve all seen one bomb. Even the best have a bad night. Overcoming fear must be a prerequisite for a comedian. Comedian and author Jerry Gillies developed an excellent approach for handling fear: “Confront your fears, list them, get to know them, and only then will you be able to put them aside and move ahead.” This is very relevant advice for a lung cancer survivor. I practiced a broader form of writing down fears by producing a journal of treatment experiences. I still re-read that journal to keep connected to my treatment. While I read the entire entry, I concentrate on what I was afraid of. So in a broader sense, I practiced Jerry Gillies' sage advice and benefited from it. The power of writing down fearful things is important because my fear quickly morphed into a monster by spawning a multitude activities that I may or may not have been frightened by. For example, chemotherapy infusions were frightful events — at least that is the way my journals in early treatment read. But was the entire infusion process frightening? What I was afraid of was installing the IV, not the stick, but the wiggle to find the right place to situate the device. An irrational fear because wiggling generates a mild discomfort but in my mind, wiggling is enduring torture. I have this mental picture of being strapped to a chair for interrogation while nurse-after-nurse “sticks and wiggles” on every extremity. Just last week during a blood draw, the head phlebotomist had to pin me to the chair because I was “going down” during the procedure. A quick application of smelling salts saved the day! Following Gillies’ advice, I would write down “wiggle” on my list of fears. Getting to know my fear of wiggling produced some ways to put it aside and move ahead. My first way was Xanax. One mg of Xanax about 30 minutes before a procedure and IV installs are a piece of cake. Another way is to tell the nurse ahead of the procedure that I have a phobia and not to wiggle; pull it out and try another vein. Another journal reveal is fear of pain caused by lung cancer progression. Reading disclosed metastasizing tumors invading my spinal chord causing excruciating pain. My oncologist dismissed this by explaining palliative radiation and hospice care. Thus, I was able to put this fear aside and continue on. A lung cancer diagnosis is the most frightening event in my life, treatment is a close second, and recurrence follows. Lung cancer trumps everything else I deal with. But, I learned to face this fear. Writing about fear helps me understand it and deal with it. Jerry Gillies’ approach works. Stay the course.