Entering a New Phase:  A Clinical Trial

Yippee!  Mark’s a lab rat!


We found out a few days ago that Mark has been admitted to a clinical trial.  It was challenging to keep our spirits up as we waited for the screening results to see if he qualified.  For this trial, his cancer had to be causing a high level of inflammation in his body.  A blood test measures the level of inflammation, and according to the clinical trial research assistant, most people don’t qualify.  But Mark did, so yesterday he started the new regimen.

In this trial, the chemotherapy is administered through pills.  Mark takes a daily set of pills of Xeloda, and another daily set of pills that are either the experimental drug or a placebo.  Not even our physician knows if Mark is taking the new drug or the placebo, because this is a blind trial.  But even just Xeloda alone will hopefully keep the cancer at bay, at least for a while.  There are always side effects, but for most people on this drug, they supposedly aren’t too bad.  We’ll see.

I’ve been reading The Emperor of All Maladies:  A Biography of Cancer by Dr. Siddhartha Mukherjee.  (PBS is airing a documentary based on this book in a few days.)  I’m not a glutton for punishment—I just really want to understand as much as I can about this loathsome disease.  The book is challenging, but very well-written and for the most part understandable to a lay person.  Dr. Mukherjee provided the best explanation I’ve found for why any particular chemotherapy usually only works for a while:

“Every generation of cancer cells creates a small number of cells that is genetically different from its parents.  When a chemotherapeutic drug or the immune system attacks cancer, mutant clones that can resist the attack grow out.  The fittest cancer cell survives.  This mirthless, relentless cycle of mutation, selection and overgrowth generates cells that are more and more adapted to survival and growth.”

Mutant clones…But we’re heartened, because at least we’re back in the battle.  And as I see it, new treatments are being developed every day, so our best bet is to keep going as best we can.

A friend recently sent me a New York Times article touting the value of clinical trials and bemoaning the fact that so few adults enter trials (March 23, 2015, in the Personal Health section).  I read it with interest, but I think it really missed the mark.

First, you have to be screened into a clinical trial.  As far as I can tell, the test sponsors want their participants to be extremely healthy, except for having the disease under study.  So if you have other conditions, like diabetes, heart disease or a limited liver function, you’re likely to be screened out.  Lucky for us that Mark is otherwise healthy, not so lucky for so many others who have multiple challenges.  You also have to be at the right point in your treatment.  Some trials will only take the newly-diagnosed, and I think it’s quite a leap of faith to turn away from a standard course of treatment to an experimental treatment right at the time of diagnosis.

Secondly, the trials often require that you adhere to a tremendously intrusive and rigorous schedule.  Mark’s trial is very easy that way.  He will only have to go to the clinic once a week.  We heard about another trial that required visits to the clinic four times a week.  At some point you’re trading off the chance for more time against quality of life issues.

Also, if you’re in a blind trial (like Mark), you won’t even know if you’re getting the experimental drug.  You’re just as likely to be getting a placebo.

Finally, you better pack your suitcase.  Dr. C asked us at one point, Are you willing to travel?  We’re lucky that this trial is here in Seattle.  However, some of the trials are only taking place in cancer research centers in other parts of the country.  Since the trials seem to require very close monitoring with regular clinic visits, I think the only practical way to participate would be to temporarily relocate, a pretty tough requirement for most people.

So off we go, galloping into this next phase, cautiously hopeful.  The sun is shining today in Seattle, and the trees are pushing out the first shiny green leaves of spring.  Life is good.

Moving on to the next phase...

The first battle may be lost, but the war isn’t over…

Mark’s latest CAT scan did not reveal happy news.  Although the chemo cocktail was continuing to control the tumors that were discovered in October, new tumors have sprouted, and these new tumors are resistant to Mark’s current drugs.  So, we are now done with this course of treatment.  Dr. C told us that this would happen, and we should have been prepared, but we were still stunned.

The new tumors caused a resurgence of Mark’s ascites (the accumulation of fluid in his abdomen).  This is an extremely uncomfortable condition, since the fluid makes it difficult for him to eat and breath, and puts a lot of strain and extra weight on his body.  It also leaches away valuable nutrients.  Every few days now, he has to undergo a minor surgical procedure to drain the fluid.

Mark has applied to participate in an ongoing clinical trial involving the administration of a different pancreatic cancer drug, combined with a second drug currently used for other cancers, but new for pancreatic cancer.  We are awaiting the results of blood tests which will determine if he qualifies for the trial.  This new drug combo is administrated by way of pills, not infusions, and is described as having minimal side effects.  

If Mark doesn’t qualify for the trial, the next step will involve infusions of another combination of chemical agents.  This particular infusion combination has significant side-effects, and so it remains to be seen whether he can tolerate the treatment.

Chemotherapy is not for the faint of heart, but I am thankful that there are still options, and that we still have paths we can pursue.  

I’ve been thinking about the Kugler-Ross model of the five emotional stages of grief that supposedly occur after a life-threatening or life-altering event.  She identified them as denial, anger, bargaining, depression and acceptance.  I’ve embraced denial, and will continue to hold onto it as long as I can.  I’m not sure about anger and bargaining.  Depression, right on.  And acceptance, well, I guess that comes after you give up on denial.

But there are so many other intense emotions wrapped around this experience.  Emotional exhaustion is a biggie, and understandable, since issues of life and death loom over our daily experience and dog us constantly.  On my part, there’s a feeling of guilt when I sometimes just want to run away to escape from this stormy world of illness and pain.  Mark feels guilt that he’s pulling me through this dark place with him.  And the feelings of helplessness are profound.  In truth, we never have as much control over our lives as we think we do, but now I feel like a piece of dandelion fluff tossed in a high wind.

And strangely enough…there is gratitude.  

I’ve heard people say that when their time comes, they want to die quickly and painlessly, with no advance warning.  I know this is an enticing notion.  But though what Mark and I are experiencing is sometimes excruciating, we understand that it’s likely we have a finite time together, and so we plan and make sure we say what needs to be said, to family, friends and to each other.  And for this, I am grateful.

And a little bit of time travel--

This last weekend Mark and I drove to a memorial service in Surrey BC (near Vancouver) for my cousin Andy’s wife, Sharon. 

Andy, his brother Bill, my younger sister Linda and I spent our early years together in Victoria, British Columbia.  The four of us are the children of two sisters who emigrated from Great Britain to Victoria Canada in the early 1950’s.  My mother's third sister, who was childless, also lived nearby.  Holidays, and many weekends, were passed in the company of this extended family.  Linda and I had a significantly older brother, and later Andy and Bill’s much younger sister was born, but I remember best the four of us similarly-aged cousins, playing tag on the street at the magical twilight hour, or climbing the old cherry tree in our backyard.  (There was a large apple tree too, but true tree-climbers know that cherry trees have smooth bark and wonderfully spreading branches, while apple tree bark is brittle and scratchy.)  We were all just one step or so above being close to dirt-poor.  I wore thrift store clothes, but we always had enough to eat.  My memories of those days with my cousins are knit into the fabric of my childhood.


After my immediate family moved from Canada to the States when I was in junior high, we cousins only saw each other on vacation trips.  Then, as we all grew up and were launched, our contacts were limited to occasional catch-up notes in Christmas cards.  

In recent years, though, I’ve been pulled closer into the orbit of my cousins.  Andy and his wife Sharon visited us in Alaska, and later in Washington.  Andy has been diligent about recounting the comings-and-goings of our far flung family in England.  Without Andy’s reports, I think I would have lost track of half of them by now.  In this last year, Sharon fell very ill with an incurable condition that caused the blood vessels in her brain to break and bleed.  After several months of hospitalization and nursing home care, she lost the fight.  Andy and Sharon had been married for forty-three years.

Mark and I drove north to Surrey on a cool cloudy day, quiet and lost in our own thoughts.  I worried that Mark might find attending a memorial service demoralizing, but that wasn’t the case.  We stayed in a hotel on the beach in White Rock, where the outgoing tide reveals a vast swath of sandy beach, and locals and visitors alike descend to beach comb and run their dogs.  The trip was a good distraction as we waited for Mark’s CAT scan results.

When the extended family gathered together before the memorial ceremony, I realized that my cousins and I have become the “old folks.”   Cousin Andy looked strong and calm, but unspeakably weary, as he prepared to give Sharon’s eulogy.  Cousin Bill still has his rakish grin, but, like Mark,  he is struggling with a very serious cancer.  Andy’s children are now parents themselves, and Andy’s grandchildren swirled through the crowd, unable to hold themselves still for very long.  

It is just the way of things, I guess.  I don’t know how I’m supposed to feel at this age, and I don’t think about my age very often.  But there, in that room of multiple generations, my mind kept flashing back to that time years ago in Victoria, when my cousins, my sister and I danced around and through the legs of the old folks, knowing for certain that we would never be that old.

Where's that Gorilla?

Today would have been Mark’s third scheduled infusion in this round of chemotherapy, but his blood work this morning shows that his platelet level is too low for the treatment.  He will skip this week to give his body some more time to recover.  We are told this is a very common occurrence as treatment progresses.  In fact, the doctor remarked that she was surprised Mark has managed to get this far on the rigorous chemotherapy schedule without a modification.  The bone marrow, she tells us, “gets tired.”

Well, we are all tired.

Last week we were given the unwelcome news that Mark’s tumor markers appeared to be on the rise.  We were advised, though, that this was not a definitive indicator. Mark will have a CAT scan on March 13, and the scan will tell us whether the tumors are growing.  In the meantime, we will fly back to the desert for some recovery time.  

Years ago, I watched a training video of a room of people bouncing white and black balls.  We viewers were tasked with counting how many times the black balls bounced during a period of time.  It required quite a bit of concentration.  Afterwards, the facilitator asked the viewers if they had noticed anything unusual during the test period.  No one had—in spite of the fact that a man in a gorilla suit had walked through the center of the video scene of bouncing balls.  We didn’t see the gorilla because we were totally focused on the task we’d been assigned.  Food for thought:  When you’re totally focused on one task, you’re likely to miss all the other things that are going on around you. 

And so it is in Cancer Land.  We are totally focused on negotiating through this maze of cancer, and so much else doesn’t get noticed.  February disappeared in a blur.  Days and weeks are measured not by the month or the season, but rather as how long since the last treatment, how long until the next infusion, when will Mark have the next diagnostic test.  I don’t want to cede this kind of power to the disease, but cancer dogs us.  I have emails and letters from friends that I haven’t answered because I just can’t muster the energy.  I am astonished when I notice that some trees and bushes are in full-fledged bloom in Seattle.  When did winter turn toward spring?  

But bright spots do sparkle, even in the cancer gloom.  Soon we will move back into our house, which has been completely remodeled in a crazy-short timeframe, thanks to the compassion and diligence of our architect and builder team.  Our son will be close by, and our new dog will arrive.  This coming week we once again will enjoy the soothing tranquility of the desert.  Best of all, we have friends who have made it their business to make sure that we are cared for—friends who have walked with us, cooked for us, and showered us with messages of love and support.  

We can’t escape from Cancer Land, not now at least. But we are trying to lift our heads once in a while, so that we don’t miss the gorilla, or whatever else is out there on our horizon.