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 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.
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, wierd, 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 suicide ideation and suicide attempts are a one-per cent 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-am 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.
I arrived to the care of anesthiology after four days of waiting, imaging and fact-finding. Another hour of waiting and the tempo suddenly shifted. A gurney ride ended in a cluttered room with four attendants and machines all around. All four people went to work on different areas of my body, inserting catheters and attaching electrodes. A soothing woman gave me an oxygen mask, with cool odorless air. She rubbed my chest and shoulders while speaking in a hypnotic voice, “Breathe deeply Breathe”. I felt no trace of fear as another said, I am giving you anesthetic now and the effect was immediate.
On Saturday March 4, Eddy and I visited our local Fedex store to work on printing marketing materials for the American Association of Pastoral Counselors. Seated at a computer station, I noticed a sudden sensation of losing eye focus, my head began moving side to side, my breathing changed to a rapid snort, the left side of my face began to sag and my mouth began to druel. I thought, “If I don’t get control of myself, people will soon notice me losing it here.”
About that time Eddy said, “Are you alright? Do you need to lie down? What can I do to help you? What do you need?”
I thought to myself, “this is either a stroke or the effect of a brain tumor. I surely do hope this isn’t fatal. I must tell others to call for help and get me to an emergency room as quickly as possible.” I was having a practical clear thought, complete with appropriate words, but no ability to speak. I was able to reach out my right hand, grasp a pen and scrawl “S T R O K E?” on a sheet of paper.
Recently two friends with advanced cancer have needed further treatment, because their first-line treatment with Interleukin 2 was no longer stopping the growth of cancer. I am following their progress intently because I could suddenly be in a similar situation following any of my future six-month “routine scans”.
Patients with melanoma or renal cell cancer are fortunate in that new treatments have become available in the past few years, treatments that are often helpful and sometimes curative. All of the new treatments are based on stimulating the body’s natural immune system to find and attack cancer cells. Immune treatments are unlike older treatments using radiation or chemotherapy which poison all body cells, including cancer cells.
Ipilumumab (Yervoy), Pembroluzimab (Keytruda) and Nivolumab (Opdivo) are examples of recently approved immune-stimulating compounds which often help advanced melanoma and renal cell cancer patients. These compounds are usually administered intravenously at an infusion center, alone or in combination, at two or three week intervals.
The body’s immune system is a powerful force in maintaining health. It can also be a dangerous, deadly force when unleashed. The long list of potential serious side-effects extends even to organ damage, which can develop rapidly – leading to a serious health emergency. A recent article in the New York Times discusses how health care professionals can be caught off-guard when serious side effects develop. Another article reveals that sometimes immune therapy can damage the heart.
Not long ago, a dear friend from my years at Oregon State University was given pembro as part of a research trial for her cancer. After her first couple doses, she suddenly lapsed into a diabetic coma. Under the care of her cancer team, it was found that her immune system had attacked and destroyed her pancreas. She was suddenly and profoundly a type 1 diabetic. Pembro was withdrawn to avoid further organ damage and sadly, her cancer progressed and she died a few months later.
Despite the danger, if I need further treatment with newer immune boosting drugs, I will proceed. I will stay close to the most experienced immune treatment team available and move forward with caution, hoping to be among those that are helped.
These are excerpts from my responses to a questionnaire provided by a researcher at Oregon Health and Sciences University in 2015.
Please tell us about your scar.
My scar is a tic-tac-toe pattern located on my mid back. The center rectangle is slightly inset because flesh was excised, prior to grafting new skin over the excision.
My scar is normally hidden beneath my shirt. Although I visited a gymnasium often for the last few years, only one of the many of people in the dressing area or swimming pool have ever asked me about my scar. I suppose it is considered impolite to ask about scars, the more obvious the scar, the more impolite the asking.
What does your scar represent to you?
My scar is evidence of poor self-care. I didn’t have to get melanoma; it was a result of excessive exposure to the sun in my youth. My skin doesn’t tan easily and I spent a lot of time outdoors, doing farm-labor, yearning for the dark tan that some of my friends were easily able to achieve.
My scar represents a treatment failure. My surgeon was intent on establishing a wide margin, and not so concerned about the appearance of the scar. This was done in the eighties with the treatment protocol of that time, which failed to account for the migration of melanoma cells in the lymph system. Unfortunately, 30 years later metastatic melanoma returned in my lungs and lymph nodes.
Most important, my scar represents survival. I’ve lived with melanoma for more than 30 years, and even though melanoma has returned as a metastatic disease, I hope to survive with help from recently developed treatments that weren’t available 30 years ago.
What does your melanoma diagnosis mean to you?
A metastatic melanoma diagnosis is normally considered terminal with an uncertain but foreshortened lifespan.
I am fortunate to be a responder to Interleukin 2 treatment. I am in uncertain territory with stable disease. This means that metastatic melanoma is still a reality in my life, and it’s on my mind, but the trend of my scans has been reassuring.
How does melanoma diagnosis impact your daily life?
I have chosen to reorient my life around surviving metastatic melanoma. I no longer work for pay; I work for good health and wellness. My job involves giving my best morning hours over to walking plus activities from a menu of weight lifting, yoga, lap swim, meditation, and gardening.
I eat carefully and often, from a Mediterranean diet. I avoid packaged food, corn syrup, and most carbohydrates. I take vitamin and mineral supplements as well as other food supplements that are shown to have anti cancer properties.
I get lots of rest, often sleeping 10 to 12 hours a day. I avoid stressful activities, people, and situations most of the time. We don’t have a television and this leaves more time for reading.
Please tell us how you feel about the possibility of recurrence of your melanoma?
Thirty years ago, when my primary melanoma was surgically removed, I felt confident that it would never return. I mainly resolved to use sunscreen and avoid sunburn, so that no further melanoma lesions would develop.
Three years ago, when metastatic disease was discovered, my confidence evaporated. Even long-term melanoma survivors are vulnerable to metastatic recurrence. Consequently, I sometimes feel anxious about the possibility that my melanoma cells could mutate and overtake my immune system. Anxiety peaks when I’m over-tired, feeling pain in my chest, or coughing.
Please describe how you feel your cancer has been perceived by friends and family?
Friends and family know that I’ve been diagnosed with advanced cancer. These days, most people suspect that advanced cancer of any kind is still likely to be a terminal diagnosis. Many people have witnessed a friend or relative with stage-four cancer go into a precipitous decline and die within months.
Eddy and I decided to go public with my cancer diagnosis. My son Chad agreed to send Emails to a list of family and friends to keep them informed about my health. Some of the early shared medical information was discouraging, as doctors initially thought that I had inoperable lung cancer. People who saw me often in public were concerned and saddened to rapid weight loss, pale skin color, and generally looking suddenly frail.
When I entered treatment, most people thought that I was receiving chemo-therapy, although I was actually being infused with immunotherapy, high dose interleukin-2. This distinction is important because chemotherapy does not work with metastatic melanoma, whereas immunotherapy sometimes works very well.
Within a couple of months into IL-2 treatment, it became clear that I was responding. I regained lost weight and a ruddy complexion. My mood was less anxious and my overall appearance was trending to more normal.
Depending on their world-view, people think this was miracle of improved cancer treatment, an answer to prayer, or both.
Given your cancer diagnosis, tell us how you view the health of your friends and family?
Good health is an ultimate gift in this life. I took it for-granted until I encountered a serious threat to my health.
Melanoma is actually a common disease in the State of Oregon. That’s surprising, because we think Oregon is not a sunny state. Fair skin, blue eyes and exposure to ultraviolet rays in early life all increase the risk of developing Melanoma. It’s a shame that people aren’t more careful with sun exposure, especially with their children.
My cancer diagnosis suddenly made me much more aware of others with cancer, and now that I’m in my late 60’s, more people my age are getting cancer. Four friends have died from various forms of cancer in the past two years. Several others had successful treatment for early stage cancers and are in remission.
Despite progress with treating cancer in the past 25 years, several forms remain resistant to treatment. I find myself over-reacting when I hear of someone who has been recently diagnosed and am too quick to ask: what type of cancer do they have?
Do you feel like a survivor?
Eddy framed a photo of me on the summit of Mt. Lassen, with the caption, “I am a long-term survivor.” We hung her artistic creation in my room at Providence Cancer Center during each of the four last weeks of immunotherapy.
The wall art became a conversation topic with caregivers and visitors about surviving melanoma. It probably seemed audacious to the staff, since they know very well that most people aren’t cured by the treatment they provide. For me, the wall art was a daily reminder that I’ve already experienced 30 years of living with melanoma and am therefore likely to experience several more years.
Following treatment my oncologist said, “You are a responder, and if this continues for another year or two, statistics say it’s unlikely the melanoma will return. But I can’t give you an iron-clad guarantee.” I feel grateful that I’ve survived and hopeful for the future.
I also feel like a survivor who has returned from war. Many of my fellow cancer patients have not survived their personal encounter. I am fortunate, and best enjoy it while possible.