Infusion Thursday and aftermath Friday

I arrived yesterday at MD Anderson Hospital at 8:15 am for my blood draw, which was to be followed by my 2nd dose of chemo at 9:45 am. As opposed to the 2 prior infusion days conducted at the Mays Clinic across the street, I was scheduled to do everything at the main building. This meant I had a new maze to learn and navigate. That’s no easy task at MDA. Especially for this mouse. Ben refers to the Houston Medical Center as “Atlantis.” It is a city within a city. Some 30 years ago, I crisscrossed nearby neighborhoods’ side streets and cut-throughs from my apartment near HBU to Methodist Hospital in order to have dinner with my mother, an RN, every Sunday evening. Today, I recognize absolutely nothing. Thank goodness for GPS.

So the first order of business every infusion day is to have a needle inserted into my subclavian port in order to avoid venipuncture of my small, stubborn, skedaddling veins. They see a needle and they either shut down or play keep away. Prior to the port I was stuck so many times I’ve lost count. As my mother use to tell me, “You would have made a poor intravenous drug user!” My arms today would give you another impression. Following needle insertion, I went downstairs for my blood draw, where they close for the morning by 8:50 am, but squeezed me in at 8:55 am. From there, I checked in for my chemotherapy infusion on another floor. But, I was soon called to the front desk and informed I needed to provide more blood, and directed to a new, different lab on a different floor. Now, I had symptoms of chemo brain even prior to chemo, so it’s a good thing Ben was with me. With the help of a volunteer we finally found the very busy, very backed-up lab, signed in and waited to see my name appear on the board. One additional tube of blood donated, we headed back to infusion therapy. I checked in again, and was told we would get started as soon as my labs were in and the chemotherapy drugs ordered.

Perhaps had I been more perceptive about the consequence of a congested lab I wouldn’t have been surprised by the 5+ hour chemo delay. A scanner in the waiting room can be used on the armband to check appointment status…I checked several times, only to read the same electronic message: “Waiting for lab results.” Someone from the infusion department called after about 4 hours to inform me about the cause of the delay, and assured me it would not be much longer. And, it wasn’t. During that final hour’s wait, I had an opportunity to converse with an older gentleman whose wife drives him to MDA from Waco for treatment of mesothelioma. I have overheard numerous stories like this throughout the hospital.

Houston is the most racially and ethnically diverse metropolitan area in the U.S. MD Anderson reflects that fact. Their health care providers and employees come from all backgrounds, religions, and races. I have been treated with respect by every care provider I encounter. And, I naturally return the courtesy. Demonstrating humanity and gratitude during times of stress and discomfort is the least I can do for those who are helping to save my life. That’s why it was so disturbing to hear a man who sat next me complain about the nurse who called his father’s name after our collectively long wait. “She needs to learn to speak English,” he said loudly enough for everyone to hear. “We speak English in our country,” he continued undeterred by the staring faces. “That’s very sad,” I said aloud so he could hear me. He just shook his head as he stood up, helped his father into his wheelchair, then headed toward the infusion area. The woman he insulted was out of earshot, but had she heard him I believe she still would have treated his father in a kind and professional manner. And my faith in mankind was restored immediately as other patients joined me in disapproval of the frustrated and disgruntled man’s comments. While it’s true the nurse’s voice was not very loud, her elocution was obviously clear enough for the man to recognize his name.

My turn came around 3 pm.

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Infusion was non-eventful. I received only the trial study drug, Panitumumab, and the chemo, Taxol. Saline and steroids are always included. I was unhooked, bandaged, and out the front door by 7 pm. Ben and I had spent 11 hours at MDA! It was an “extraordinarily busy day for the lab,” I’m told. Oh well, what can be done about it? Negativity is counterproductive in every way. I chose to just relax, read, talk to some of my fellow cancer patients, and spend more precious time with my son. Anyway, I don’t have anything more important to do right now than become cancer-free.

I needed a pain pill last night due to the length of time the needle remained in the port, and I took a Pepsid and an anti-nausea pill for good measure. I slept all night, as opposed to the prior, sleepless night. I awakened at 6:45 am, took my thyroid meds, answered some emails, then decided to close my eyes “for just a little while.” I slept until 10:30 am. I awakened very rested, and a little hungry. Hungry?! I’ve had no appetite in months, so I decided to prepare a hearty breakfast. I ate a little oatmeal, a scrambled egg, a piece of gluten-free toast and tea.

Wanting to take advantage of the short-lived energy I was feeling, likely due to the steroids, Ben and I made the short 6 min trip to the Museum of Fine Arts, Houston. I’d heard good things about their exhibit, “Pipilotti Rist: Pixel Forest and Worry Will Vanish.” Count me in! I want to vanish my worry! It was fairly interesting, but also a little strange for my taste. Flashing LED light strings hang from the ceiling, changing color and pattern in coordination with surreal video images of plants, human skin, and intermittent naked bodies displayed on two giant screens. Floor pillows are scattered throughout the space in front of the screens. I should have expected something on the more “artsy” side considering the warning about nudity at the ticket counter. It was gratuitous in my opinion, but perhaps I’m just not enlightened enough.

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Brother Patrick is here again for the weekend and he brought with him some delicious lamb chops. I had one for dinner. Patrick is taking Ben to an Astros game at the Juice Box tomorrow. Nephew Gerrit will join them. I thought about attending, too, but have reconsidered since the demise of my earlier burst of energy. Tonight, my stomach is upset and I’m very tired. I’ll stay out of the crowds for now, away from too many germs and viruses. Infusion Thursday will be here before I know it, and I don’t want to skip a week due to illness.

I also just learned today that I possess a variant RAD50 gene. The report says the variant may or may not contribute to my clinical history. More testing and genetic counseling are recommended. I’ll follow up with MDA’s genetic counseling department next week. Modern medicine, technology and the amazing human beings who work tirelessly for a cure inspire my faith and hope in a cancer-free future.

What an amazing time to be alive!
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