Final Post

With advanced kidney cancer, the best hope is to delay the inevitable. With two forms of targeted therapy, immunotherapy, and an infusion called Avastin, we were able to stretch survival from the usual projection of three to six months to something closer to a couple of years. 

The spinal operation was superficially successful but still left me bedridden as a paraplegic. Given that outcome, I decided to suspend active cancer treatment and to enter hospice care. To date, such care has been provided at home. Various medical technicians and nurses have provided periodic at-home care, and my husband Sam has supplied routine home care. Without his loving care, supplemented by legions of friends and relatives, none of this extensive care would have been possible. A lifetime of friendships now surrounds me with an unending rainbow of love and devotion, for which I am daily grateful.

Whenever I'm not over-scheduled with medical appointments, I'm often engaged in conversations with longtime colleagues. My professional writing has unfortunately slowed to a trickle, as other matters have overtaken those thoughts. Perhaps I can pick up some more later. Still, I have a few pieces in the publication pipeline. An article appeared in last month's issue of a journal, and another just appeared in this month's issue. 

I'm happy to have six grown children who live nearby, and grandchildren are an endless delight. Visits with wee ones need to be fairly short; otherwise they're simply exhausting 

This month's-long journey has been a marathon, but it's had many rewards particularly in that extra time I've been able to spend with my husband. We even got married! Remember? And we traveled hither and yon, including that great transatlantic cruise and sojourns to London, Paris, and Puerto Rico. Wow!

Sixty-nine doesn't sound like a lot of lifetime, but in reality it is. I've been hugely blessed. Those folks with an overabundance of curiosity can find my autobiography and see what I mean. 

I have no grand plans for my remaining weeks. Sam got us Apple TV, which is making for some fun TV discoveries. I've publisher 17 books and an array of poems, stories, and "stuff " that seems like enough. I have a great family and more friends than I can count. What more could anyone want?

Thanks for reading. 

Another Approach

The previous post was titled, “Next?” and offered a cliff-hanger. The mysterious shortness of breath, caused by fluid around the lower part of my left lung, resolved on its own over about two week’s time. By the date that a thoracentesis procedure to draw off the fluid had been scheduled, there was insufficient fluid remaining to complete the procedure safely. While I was grateful not to have a needle poked through my back, absent the procedure the nature of the fluid remains a matter of conjecture. Still, I am glad not to have the shortness of breath.

Toward the end of October, however, “next” came in the form of increasing difficulty walking. I found myself using my walking stick more than occasionally. Especially over the course of about four days, my mobility became significantly compromised. Consequently, on October 31—Halloween—my partner took me to the hospital emergency room where, over the course of 12 hours, multiple tests were conducted, including a complete spinal MRI. By evening, a neurosurgeon brought the conclusion that a tumor, part of the multiple metastases of my kidney cancer, had wrapped around my spine and was cutting off nerve sensations to my lower body. The surgeon recommended surgery the next afternoon, November 1, to partially remove the tumor, hopefully, to prevent my becoming a paraplegic. Complete removal was not an option, as it would have been major surgery, which wasn’t advisable because of the advanced state of my cancer. I consulted with two of my other doctors the next morning and decided to go ahead with the surgery that afternoon.

Surgery was performed on Tuesday afternoon, after which I was walking (with a new walker provided during the previous day in the emergency room), and on Wednesday a physical therapist had me negotiating stairs with the walker. That exercise confirmed that I could be released to go home. Our house is on four levels, two main floors that each split. But I preferred going home and dealing with the stairs, rather than transferring to a one-level rehabilitation facility. I was released on Thursday afternoon, and recovery from the surgical incision proceeded normally. Recover of mobility has been less satisfactory. My mobility remains compromised, meaning that I must use the walker for any more than a step or two, or cling to a wall, a railing, or a sturdy piece of furniture. Mobility is further compromised by significant peripheral neuropathy (numbness in my feet), which means that I have little sensation in my feet and walk as though on pillows of unstable air.

Fortunately, I have enough control in my feet to permit driving (an automatic transmission), although I need to be very cautious and I don’t attempt to drive far or for a long time. I’m thankful to be able to do routine shopping and other errands, get out to meet friends, and so forth—a semblance of normality.

The shortness of breath episode and the spinal tumor episode argued for discontinuing the once-promising immunotherapy using Opdivo (nivolumab). It’s impossible to know whether Opdivo was effective in any way, given the two problems that, in fact, could well have been caused by the immunotherapy. In any case, they were not prevented by it. And so the immunotherapy was discontinued, and last week I began a new infusion therapy with a drug called Avastin (bevacizumab).

Originally, the thought was that I would undergo targeted radiation therapy on the remaining spinal tumor. However, I opted not to do so. In part my decision was based on experience with radiation therapy dating back 20+ years ago. While radiation might (or might not) shrink the remaining tumor, it could produce tissue swelling and make the nerve condition worse before it got better. It also would cause fatigue, likely for several weeks. And, because renal cancer is radiation resistant, it might not result in any tumor shrinkage at all.

I concluded that a better bet would be the Avastin, which also works to shrink tumors and might cause fewer side effects. The action of Avastin is similar to Sutent, the first targeted therapy I took in 2015, which is to act on blood vessels to interfere with the growth and spread of tumors. Sutent had been effective but was discontinued when it caused necrosis of the jawbone, a known risk that was increased by my earlier radiation therapy to the jaw area. Avastin is not supposed to have this side effect. In fact, after the first infusion (a week ago) I have experienced minor side effects similar to those that accompanied Sutent.

For now, I will continue to pursue physical therapy with the hope of improving my mobility, and will (barring the unforeseen) move forward with the every-three-weeks Avastin infusion schedule.

Next?

Waiting for just the right time to write a new post didn’t pan out as a productive strategy, so the time is now, right or not. My husband Sam and I spent most of May on a once-in-a-lifetime trip, combining a thirteen-day transatlantic cruise with another ten days split between London and Paris. Needless to say, it was fantastic. I had been taking Afinitor since the previous December. That’s a targeted therapy for my renal cancer. I’d switched to that after the previous drug, Sutent, produced serious side effects—the most significant being necrosis of the jaw where I’d previously had radiation therapy for an unrelated cancer more than twenty years ago.

I had purposely delayed a follow-up CT scan until after the trip, remembering that when I began this cancer journey a year earlier, we’d had to cancel a planned tour of Italy. So in June I had the new CT scan, and the results were mixed. Some tumors had shrunk, some had grown. That was an indication to my oncologist that Afinitor had run its course as an effective treatment. What next?

Progress is continuous in the field of cancer treatment. A year ago—even less—immunotherapy was still making its way through the approval pipeline. Now, fortuitously, it was ready to be used to treat kidney cancer. On August 23 I had my first infusion of the immunotherapy drug Opdivo. Additional infusions would follow every other week. The first infusion was administered on a Tuesday morning. By evening I was running a fever of 101.7 F and aching all over. My fever was slightly lower by bedtime, and the next morning I was feeling relatively normal. Subsequent infusions to date have produced no discernible reaction, thankfully. (That relative stability emboldened me to take my godson on a weeklong trip a couple of states away to visit relatives.)

Unfortunately as this new therapy was getting underway, pain in the area where my left kidney had been removed—now the region of the central tumor, from which the metastases have spread—had begun to increase. Trying to control the pain progressed through several painkillers: Norco, Percocet, and now a combination of a Fentanyl patch and Percocet (7.5-325). The Percocet is for when the patch isn’t enough and is prescribed for every four hours. Most days I need the Percocet around the clock.

This past Friday I woke up experiencing shortness of breath and a sharp, stabbing pain in the left side of my chest. Off to the Emergency Room. After a panoply of tests, the conclusion was that I was developing pneumonia in my left lung. (This was the same day Hillary Clinton was diagnosed with pneumonia. I don’t have anything like her stamina.) I was prescribed an antibiotic and went home. However, as I read about the antibiotic I became concerned about the potential side effects. So on Saturday morning I called my family practice doctor and obtained prescriptions for two antibiotics that I'd previously used without a problem.

On Sunday I was again (still) in distress with shortness of breath, so we went back to the ER. This time, along with other tests, a CT scan was done to rule out a pulmonary embolism (blood clot in the lung). More antibiotics were administered by infusion and, absent any other evidence, the diagnosis of developing pneumonia was held.

On Monday I followed up with a visit to my oncologist, who voiced skepticism about the “developing pneumonia” diagnosis and set in motion a consultation with a pulmonary specialist. That is still in process.

On Tuesday I followed up with my family practice doctor, who ordered lab work to rule out congestive heart failure but speculated that the real cause for shortness of breath may be the increased growth of the cancer, particularly metastases in the left lung. Results for the congestive heart failure were negative.

My oncologist has suggested that, although some increase in some tumors has occurred, it is too early in the Opdivo treatment to conclude that it is not working. But that still leaves the shortness of breath to be addressed. So...next?

Travel Again

London's Big Ben and Houses of Parliament

In an earlier post I talked about the psychological and physical benefits of travel. Whether it’s a short excursion or a major trip, I find travel to be a way of changing my perspective regarding myself and my illness as well as of the world around me.

Last year when I was diagnosed with a return of my kidney cancer some seventeen years after the original episode, one of the first questions I asked my oncologist was: Will I be able to travel? His answer was that if the treatment was stable, then yes. In May I took him at his word in a way more vigorous that I’d previously ventured. A few short excursions and a February week at a San Juan resort had proved successful, and so in May we spent most of the month traveling abroad.

The first leg was leisurely: a thirteen-day transatlantic cruise to England. The first seven days of the cruise were simply at sea, which was very relaxing. Thereafter we began stopping at various ports. In the Azores and Lisbon, Portugal, we got off the ship and wandered around the port towns. In Spain and France, we took bus tours to sights we wanted to see. Once we landed in Southampton, England, however, our travel became more energetic. Over the next ten days, we spent several days in London, sightseeing and enjoying West End theater most evenings, then we took the Eurostar train to Paris for a few days of sightseeing. After that, we returned to London for a few more days before flying home.

The combination of cancer, treatment, and side effects tends to limit my energy; and so there were some concessions, such as a daily nap. We would have breakfast, do a museum visit or some other activity, have lunch, and return to our hotel so that I could have a nap. Then we’d be able to enjoy late afternoon, dinner, and evening activities. We did quite a bit of walking, and I occasionally used my walking stick to take some pressure off my perpetually sore, swollen feet (a side effect of the cancer treatment). Often we zipped around London or Paris on the subways, which invariably got us close to our destinations.

A couple of other concessions: We left our largest suitcase in a railway left-luggage facility in London rather than schlep it to Paris. And I reserved a chauffeured car to Heathrow airport on our last day, rather than deal with luggage on the airport train.

London and Paris have been favorite destinations over many years, and being able to visit them again was psychologically energizing even though it was physically exhausting. My attitude has been that cancer is unpredictable, and who knows if I’ll get another chance to travel in this manner. The maxim, “Seize the day,” seems all the more reasonable, given the circumstances.

And the trip was exhausting. As I write this nearly a month after our return, I’m still struggling to regain some energy. Prior to the trip my oncologist noted that my anemia was worsening. Upon our return, he switched me from the daily iron tablet, which didn’t seem to be effective, to iron infusions. I’ve had two infusions now, a week apart, and hope they’ll eventually help decrease the anemia and return some energy. Anemia is energy-zapping. In addition to fatigue, it makes my fingernails like tissue paper, shortens my breath (because fewer red blood cells are available to carry oxygen), and diminishes my appetite. I often feel too tired to eat. I lost about ten pounds, mostly during the last two weeks of the trip, and have lost a few more here at home. While I can stand to lose a bit of weight, I’m trying to slow that down. I don’t recommend anemia as a weight-loss program.

But, bottom line, would I do it again? Absolutely! I have a passion for traveling. Other people have other passions. I tend to believe that in pursuing one’s passions the benefits outweigh the negative consequences.

Exercise

Confession time: I have never been an avid exerciser. That said, I have always loved walking, particularly alone in the woods—not with any goal of speed or rigor but, rather, contemplatively. Ambling along I am mindful of wildflowers, small creatures, wind in the leaves, the tapping of branch on branch, woodland aromas, geese honking on a distant pond, small birds nearby calling to one another. However, these impressions are fleeting, as my mind invariably is churning and turning—ideas, plans, memories, imaginary conversations. Sometimes I look up and wonder where I am. Deep in thought scarcely covers it. I’m sure my walks don’t constitute much actual exercise, but I believe they are healthful.

Meditative mindfulness—call it walking meditation perhaps—takes me both outside myself and deeply within, contradictory as that sounds. I find such mindfulness in the woods. I also find it, albeit slightly less easily, meandering down city streets, admiring architecture and interesting shops, and of course people-watching. Or in gardens, modest or magnificent. And in art museums and galleries, especially there. Anywhere, really.

One side effect of Afinitor, which I am currently taking as a treatment for renal cancer, is swelling and soreness in the extremities. It can affect other areas, such as hands and face, but I feel it in my feet and ankles, particularly late in the day and more so if I have been standing or walking quite a bit. That condition is aggravated by a longstanding neuroma in my right foot. I have purchased and sometimes use a walking stick.

A bit of style, in my mind, goes a long way toward alleviating the feelings of age and infirmity that come with using a cane, even if such use is merely occasional. Mine is a Fritz style with a dark Ovangkol shaft (an African wood similar to rosewood) and an olivewood handle, joined by a gold and silver band. Using the walking stick helps take some pressure off my “bad” foot. I also have a folding cane to use when traveling. So, I’m still walking, a bit less and a little slower, but still putting one foot before the other.

Meanwhile, I’m also keeping up with yoga (see the earlier post) and walking the indoor track at the local YMCA some mornings. Now that spring has arrived, I’ve aired up my bicycle tires. A few years ago I stopped dodging traffic on city streets and now ride almost exclusively on a rail-to-trail path, which also has the benefit of being level. Still, it’s exercise—and quite enjoyable, all fresh air and sunshine. I might even suggest that it can be a form of rolling meditation.

Creating

Iguana, acrylic on canvas

Creating, whether one writes, paints, arranges flowers, or what have you, takes a person outside him- or herself. That’s always been my experience. I can be lost in a manuscript on the computer or in layers of paint on a canvas for hours, oblivious not only to the passage of time but also to pain and hunger.

Painting, for me at least, for as much as it takes me outside myself, it also takes me inside—to a different place, a deeper place, somewhere beyond the conscious. There is something primal about pushing paint around on canvas. Even when it is a frustrating exercise, which it often is, there is still something uniquely satisfying about it. Contradiction upon contradiction. It is both energizing and calming.

I scarcely recall a time when I did not paint, and I can’t imagine a time when I won’t want to. I’m certainly not alone in persevering despite various odds: finding the time, energy, and drive to ignore the side effects of my cancer therapy and just get on with it. Some famous examples are worth considering. Painter Georgia O’Keeffe in her final years continued to paint even as macular degeneration dimmed her eyesight. Classical pianist Arthur Rubinstein did not give up performing until he was virtually blind. Both continued creating into their nineties. Ludwig van Beethoven began experiencing hearing loss early on and was nearly totally deaf when he composed some of his best-known works.

Cat Chair, acrylic on canvas

Modern artist Henri Matisse was diagnosed with abdominal cancer at age seventy-two. When surgery left him bed- and chair-bound, he turned from painting to creating paper cut-outs, for which he became almost as well known as for his earlier paintings. He continued creating in this new way for the next decade until his death at age eighty-four. Impressionist painter Pierre-Auguste Renoir developed rheumatoid arthritis that left his hands paralyzed and so had his brushes strapped to his hands in order to continue painting until his death at seventy-eight.

If you are a creative person — a writer, a painter, a composer, a performer — you cannot not work, you cannot simply stop. You must create. Against all odds.

Note: Displayed are two recent paintings I composed as remembrances of a vacation trip to Puerto Rico a couple of months ago.