Marty at a fork in the trail, gaining strength to proceed
“This is crazy. She is telling me to go back to Highway 43 South to Lake Oswego again,” Eddy said.
I replied, “We already did that — GPS is in a loop. Ignore her; turn right at the next light and it will take us down to OHSU.”
“OK, but I just hate it it when Roberta gets fouled up,” Eddy said, referring to the woman in our GPS.
I need a break from modernity with all its helpful smart devices and services demanding attention and obedience. I want to set out on a footpath without electronics, maps, guidebooks and cameras — just put one foot in front of the other at a pace that is comforting. Or maybe paddle a kayak, even in the city, pushing off from the shore, letting go of a deep breath. Whew.
I’ve wondered if being in nature is good for my health, given that walking outdoors, and especially being in the forest feels good, even if I return home tired and sore. On the new popular books cart at Multnomah County Library, I noticed The Nature Fix, by Florence Williams. She recaps her travels and interviews to answer the question: does regular activity in nature improve health? Based on her interviews Florence makes a convincing case that science says yes!
I’ve decided to plunge into Nature and spend more time during the summer of my 70th year in the Cascade Mountains taking some nature therapy. Yes, there are a tri-weekly infusions, imaging, medical appointments, and life to work around. Nonetheless, it seems doable and worthwhile. Eddy wants to come along; time to seize the day!
Marty gamely receiving an intravenous infusion of Pembro at Providence Cancer Center
During my 2014 treatment at Providence Cancer Center, I was hospitalized in a private room because Interleukin-2 infusions required continued monitoring for dangerously low blood pressure. Now in 2017, the need for further treatment brings me to the outpatient infusion center, a familiar setting for most cancer patients.
A typical infusion center is a large room with stations where individual patients spend part of a day receiving an intravenous cancer-fighting drug. At Providence Cancer Center, patient lounges are arranged in a semi-circle along window walls of a large room at the Northwest corner of the sixth floor.
The infusion center is staffed by several specialized nurses experienced with managing cancer patients and their treatment. Each nurse works with a few patients concurrently, cycling them through drawing blood, reviewing lab results, verifying eligibility for treatment, administering the prescribed treatment, and sending the patients on their way. Two nurses cross-check each other when the prescribed treatment is sent from the pharmacy to avoid any mistakes.
I have mixed feelings about being treated in an open setting. On the one hand, it’s possible to interact with other patients and caregivers and be sociable. On the other hand, it’s possible to become disturbed by witnessing the experience of other patients and caregivers.
At my last infusion, the patient located at an adjacent station was a middle-aged woman, wearing a surgical mask and a knitted cap. She was accompanied by a healthy older woman, her mother. The patient seemed uncomfortable and agitated. Apparently, the patient’s nurse had detected a medical concern and called an oncologist for a consultation.
The patient’s oncologist visited her at her station and they discussed her experience since her last infusion. She reported that she had been experiencing nausea and diarrhea, and her mother added that the patient had been unable to keep nourishment down for a few days. Her doctor said he was concerned about her safety and that this would be a reason to withhold further treatment if it continued.
The patient gradually became more upset and insisted on continuing with her treatment. When the doctor left, the patient scolded her mother for revealing information that might cause further treatment to be withheld, and asked her to be quiet.
I guessed that the patient was terrified about losing access to the prescribed treatment. This upset made sense to me, because she might not have any other viable options for treatment. I felt sad and worried for her. The patient’s mother remained at her side, holding her hand and stroking her arm.
The patient’s nurse next called for a pharmacist to consult about the drugs already prescribed to manage her side effects during treatment. Apparently she was taking several drugs, and the pharmacist recommended being more careful about the timing and sequencing of these drugs. The patient’s mood improved as she learned some constructive things that she could do to take better care of herself during the time before her next infusion. The two women left the infusion center in good spirits. I admired the nurse who had managed the patient’s need for information in addition to reassurance.
As for me, I’ve now received two infusions with tolerable side effects including fatigue, joint pain, itching skin, and chest pain during aerobic exercise. Prior to the next infusion, I’ll have CT imaging that will provide objective information about whether my treatment is helping.
It seems that my infusions cause much less grief than other patients experience and hope this helps my body stop the cancer.
According to the National Cancer Institute, about 40% of men and women in the U.S. will be diagnosed with cancer during their lifetimes. Nearly everyone will eventually have a close connection to someone who has cancer and/or become a person with cancer.
Now that I have some experience on both sides of being a person with cancer and having friends with cancer, I’m sharing a few suggestions hoping to help you deepen your connection with your friend or friends with cancer.
Examples below all start with a comment to avoid, then explain the problem, then suggest another approach.
“Cancer is so frightening, but I know what you are going through, and I’m here for you.” — You can’t know what your friend is going through, physically and emotionally, because every type of cancer has different signs, symptoms, treatments, prognoses, and outcomes. Each individual is different and two people with a similar diagnosis will have different experiences. Try saying, “I would like to know what you are experiencing, what are you going through now?”Continue reading What to Say or Not
Marty fitted with metal frame for stereotactic radio surgery.
After a melanoma tumor was found in my brain on March 9, 2017, and removed by a neurosurgeon, I met with my oncologist to plan for post-operation treatment. I was expecting a recommendation of recently developed immunotherapy treatments.
Instead my oncologist said, “I’ve taken the liberty to consult with a radiation oncologist. We reviewed your pre- and post-surgery MRIs and he says that he can treat the tissue around the tumor with radiation to lessen the risk that a tumor will regrow at that site … Would you like to go ahead and make an appointment to talk to him?”
I scrawled “Stroke?” because I could not speak during a seizure at FedEx.
While I knew that brain metastasis is a common feature of advanced melanoma, I did not know that a seizure is the most frequent first symptom of melanoma brain metastasis, more frequent than headache.
This was the first seizure of my life. None of those present could tell whether my first seizure was a stroke, so 911 was called, an ambulance arrived, and it delivered me to the nearest emergency room. A CT scan soon revealed a mass in my right frontal cortex, the probable cause of the seizure.
Bill and Marty at the Amtrak Station in Warrensburg, Missouri
Keeping On
Dear Doctor Bill,
I am thinking about you this morning while drinking my first cup of coffee. I awakened with a start in my recliner, and rushed to the bathroom, almost tripping over my wool blanket and quilt in the process. My bladder and my headache were about equally motivating and providence smiled as I did not fall, did not crack open my wounded noggin, did not have a bathroom accident. Eddy heard me lurching about and said, “How are you doing?”
This week has been that way, weird, the combination of brain surgery and compounds to promote healing and dissuade pain produces an altered lifestyle — interesting, but more challenging than normal. Last night I had some side effects of the mental kind, when I had the bathroom urge, but not the capacity to awaken clearly. In my fog, I fixated on the idea that I was trapped in a giant conspiracy to control and exploit old people, rendering us cold and powerless. I was trying to work out the details of this “system” of exploitation in my mind before it was too late, knowing that I could not resist this network of terror much longer. This was not going well, but safe on the toilet, I began sighing and ohming with each breath, quietly then louder. Gradually I remembered reading that suicidal ideation and suicide attempts are a one percent side-effect of the gabapentin that I’m taking. Fixating on a potentially destructive thought was frightening, and I wondered about how long it will take to let it go.
That memory question led to a good idea: “I should ask Eddy for a nice 2-a.m. walk — since I promised not to roam without her.” She was amenable, and round-and-round the kitchen, hallway, living room, dining room, office circuit we went, padding along in our stocking feet murmuring to each other about this and that, quietly to avoid waking our beloved downstairs neighbors.
Early-hour sanity walks on the floor were a prominent feature of our week-long stay at Oregon Health and Sciences and it’s nurturing to be able to continue them in a drastically shortnened form here at home.
As I think of you living at home alone, with the challenges of old age this morning, I remain in awe of your remarkable ability to succeed in self-care and community service in your present position of citizen of the show-me state.
