Progress and parking problems

Chemotherapy treatment is now on Sundays. That’s the day on which I landed after a delay caused by my low white blood count. I like Sunday afternoon chemo. It’s downright leisurely. My brother, Patrick, who drove in from Austin to spend the weekend with me, and to see his beloved Astros play at the Juice Box, accompanied me to chemo. His experience at the hospital parking structure, on the other hand, was downright maddening and stressful. More about that later.

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Last Thursday I saw my oncologist, Dr. Valero, along with his research nurse, trial study nurse, and a young doctor who has joined the team on Fellowship. I was first informed that my numbers were in the normal range, at which point a mini celebration broke out replete with high-fives and enthusiastic acknowledgments of achievement. I felt as if I had just crossed a finish line…Yay!! I win!! I certainly had been feeling stronger than before. Rest and healthy nutrition has served me well, it seems. Kettle and Fire Bone Broth, Magical Chicken Soup, chicken pot pie, tenderloin, and wild, organic salmon made up the bulk of my diet over the past two weeks. I have become a fan of Rebecca Katz’s cookbook, “The Cancer Fighting Kitchen,” gifted to me by my sister, Sally Jo. It is a fantastic resource full of easy to make, appealing recipes that support optimal health and help relieve various chemo side-effects. One of my favorite choices is the Commonweal tea. It was developed at the Commonweal Cancer Help Program, a renowned retreat for patients and caregivers. It contains a blend of ginger, cloves, cinnamon, coriander seeds, and cardamom, along with vanilla extract, a little maple syrup and Almond milk. It is a nourishing, healing and stomach-settling tea I look forward to sipping, especially after long days at the hospital.

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I have also been able to once again enjoy my much treasured morning cup of coffee thanks to a Katz’s recommendation: Nicasio Coffee. Coffee without the resultant chemo stomach dyspepsia is one of those small, but huge things that makes life feel somewhat ordinary again. It truly is “normalizing” to once again hunger for, and be able to enjoy/indulge in, some of the foods I’ve always enjoyed….like coffee…and chocolate. Especially the John Kelly Chocolate my sweet friend, Mimi, sent to me! Amazing chocolates like none I’ve ever had. And, all I need is a small sliver of one of those delectable delicacies to satisfy me. I had lost all appetite for both healthy and strictly pleasurable foods. The restoration of my appetite for nutritious foods, as well as my desire for chocolate and coffee seems, to me, very healthy progress.

After discussing my treatment schedule and delay, Dr. Valero said that patients generally demonstrate a pattern of developing a low white blood count after every 2 or 3 treatments. It is part of the trial study research to determine how many weekly treatments most patients can tolerate before their white blood count falls too low. Based on my neutrophil, total white blood count, and platelets response, he added an injection of Neupogen. I will receive the drug for two days following every chemo treatment. Neupogen stimulates the growth of neutrophils, a type of white blood cell that fights infection. This will, ideally, help to keep my WBC within range so additional delays can be avoided. I still need to take steps and precautions to avoid getting an infection, but the Neupogen should help better protect me if I do become exposed to something. The most common side effect reported, according to the administering nurse, is aching or pain in the bones and muscles. I had my first dose late yesterday afternoon and will receive the second dose this afternoon.

Upon opening my robe to allow Dr. Valero and the Fellow to examine me, I received a very welcomed and reassuring response. Dr. Valero smiled broadly, nodded his head, and said, “Yes, this is what we want to see! This is very good!” Dr. Valero was very pleased with the appearance and feel of my affected breast…in a strictly clinical manner, you understand! He told the Fellow, “She is responding very well.” I knew that to be true by the diminished size of my breast, the abatement of firm, red, hot skin, the reduction of swelling in my affected lymph nodes, and pain dissipation. It was very encouraging to have Dr. Valero affirm the changes I was feeling and seeing. All this progress after just 4 treatments! I left feeling exceedingly hopeful and optimistic.

Yesterday, when my niece, Jacqueline, transported me to the hospital for my injection appointment, I arrived early so I could take care of a few things there, including filing a complaint about Patrick’s parking garage ordeal the day prior. I was taken back for the injection around 4:20 pm, but learned from the nurse that I was not supposed to receive the medication until 24 hours post chemo. As I was a couple hours shy of that timeframe, a call to the doctor’s team was necessary to formally revise the order. Once received, the nurse asked if I preferred the arm or stomach for the injection. When I asked why people choose the stomach over the arm, the nurse said, “Because of the extra fat, it is generally less painful.” As I lifted my shirt, I said, “Well, I have lost a lot of weight…But, not my spare tire! So we’re in luck!” The nurse said, “Good! Keep that!” I responded, “Apparently I’m destined to…If 90 consecutive days of Hot Yoga didn’t melt it, it’s here to stay!” So, stomach fat became my altered perspective and blessing for the day. It turns out I’ve been wrong all these years. Spare tires can be very useful and desirable…Today, I am grateful for my jiggly, wiggly stomach fat. I barely felt the injection.

Speaking of “normalization,” I rode the bus home from MD Anderson yesterday on the spur of the moment. My kind nephew, Marc, had offered to pick me up following my injection. But when I wasn’t released until about 5:20 pm, I thought, “It’s ridiculous to ask Marc to drive 45 mins in the peak traffic over here, where road work is making things even worse, then go all the way back home, just to take me 3+ miles back to the apartment. This would be a great time to figure out the bus system here.” So, with the help of the H-E-B information desk, I did. It was so simple and fast…I was back home within about 15 minutes. The bus stop is just one short block from the apartment, air-conditioned and populated by working people. It was not crowded at all; I had 2 seats to myself. I’ll be using it a lot more. And, perhaps those who want to accompany me to the hospital will see the wisdom of this choice after learning Patrick’s story.

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Now, getting to Patrick’s ordeal…He bid me goodbye on Sunday in my hospital suite around 3 pm. It is always hard to see him go, as he makes me laugh and is always open to my ever-changing plans. Patrick, like all my siblings, is very generous and thoughtful. On Saturday he insisted on purchasing a television for me, as Sally Jo does not currently have one. I persuaded him to split the cost with me, but insisted he become the owner when I return to California. I must admit, the new tv has been good company. While I don’t feel the need to have it on constantly, it is nice to stream a Netflix movie or series on the larger screen when I’m feeling particularly tired or sick.

When Patrick walked back into the suite about 30 minutes later, I figured he had left his phone, or something else important. He had lost something important…his parking chip. He could not get out of the garage. The attendant and several other MD Anderson employees informed him there was nothing they could do, as MD Anderson contracts with a third party business. The only help they provided was a phone number to call, which he did. The gentleman who answered advised him to go back down to his car, call him from the exit, and he would help him. When Patrick returned to the garage and tried to reach the service again, no one ever answered. For 1 1/2 hours, Patrick pleaded with various MD Anderson employees, including security, to help him resolve the problem. They all pleaded a lack of power to do so. He even dialed 9-1-1! No one informed him that he had the option to pay the maximum fee, a punitive $21.00, and be on his merry way. I had asked Patrick earlier if it were possible to obtain a new chip by approaching the entrance on foot. He explained that it wasn’t likely, as the metal of an approaching car has to be detected. Patrick tells me that in a desperate effort to escape, and keeping the metal necessity in mind, he formulated a plan to “McGyver his way out!” He took every metal object he could find out of his car, piled it up around the entrance machine and voila! It worked! The machine spit out a chip! He quickly ran back into the building, inserted the chip into the machine, obtained his ticket for free, as he was now within the courtesy period, and hit the road back to Austin.

It’s a parking system fraught with human error potential. Imagine an elderly person, or a family with a sick, young child trying to navigate a similar problem alone. Chemo brain is real. I forget things, and I’m distracted. The heat here can be suffocating, especially in a parking garage. This is a poor design, in my opinion, and I wanted the hospital to be informed about the problem. A patient advocate took down my report and was very sympathetic. She assured me she would investigate, inform the right people, and get back to me. I don’t expect any immediate changes, of course, but I feel certain we’re not the first to have problems with this convoluted system.

All in all it’s been a good week for me. I’m feeling fairly well after Sunday’s treatment, which included 2 chemotherapy drugs, as well as the trial study antibody drug, Panitumumab. Fatigue is always present, but a daily dose of Miralax relieves, so far, some of my worst stomach issues. My short hair is falling out in ever greater amounts, which fills me with wonder…How in the world can I lose this much hair everyday, and still have any left on my head?!?

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