The River Appears*

It has been a difficult couple of weeks and I am behind in my writing.  Just after Christmas, I learned that the sixth treatment I’ve had in two years has not been working at all. My oncologist and I had a serious talk. “There are more treatments we have, mostly chemotherapy,” but he also warned me that with each one the likelihood of efficacy goes down – sometimes to as low as 5 or 10%–often with harsher side effects. The palliative care nurse was there as well and we discussed hospice. We agreed I would come back in a week after I had absorbed this, and would discuss next steps. He did not give me a prognosis in terms of time, but we agreed it is likely a few months.

By late the next week, I had developed a serious cough that by Saturday had me wheezing and spitting up blood. On Monday morning, the doctor took one look at me and my blood work, and wanted to admit me to stabilize this — if he could — as well as I give me blood transfusions (it turned out three altogether.)  So after a temporary stay in the clinical trials area, hooked up to oxygen, I was trundled off to the main hospital and admitted. To be honest, the doctor was not sure if I would even survive. His goal was to get me to the point where, with oxygen, blood,  and medication, I could go home and be met by hospice.

Within a day the wheezing had abated,  and my breathing had returned to almost normal with the oxygen machine, and I was discharged. They sent me home in the world’s most uncomfortable ambulance, but I was glad that Marty did not have to make the return trip to Boston and manage the oxygen tank, etc. The hospital wanted to be sure that oxygen was set up int he house before they would let me go, so it was early evening by the time I reached home.  I could barely walk.

 

Since then, I have had a parade of hospice workers in and out, including a nurse, a case manager, a home aid, and a social worker. Harry is here and along with Marty they are able to attend to most of my needs, so I will not need to draw on the hospice services for a while yet, other than for medication. It annoys me that I cannot be left alone, but that is for my safety, I guess.

 

So the last leg of my journey is underway.  Emotionally it is a bit tough to be in this place, but I’m also relieved by the fact that we won’t have to schedule our lives around trips to Boston, CT scans, and all the rest.

 

I have seen others share this news and get a variety of responses. It is not dissimilar to Elizabeth Kubler Ross’s four stages of grief: denial, anger, bargaining and finally acceptance. I think the person who must make their decision may often be  further along in that continuum than others who are hearing it for the first time.
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For me, it is like trails on a path that eventually come to a river, and walking alongside the river for a while. Eventually you see a boat moored onto a small dock, and once you decide to get in the boat, you move away from the shore and begin to float down the river out to sea. You hope that it is a smooth ride, without any rapids or scary or painful spots, or places to get you tangled in the branches, or stuck on the rocks. In the early stages, it is too far and the river too winding to see the ocean at the end of the river, but I know it is coming. One thing is certain: the shore, with its pathways and treatments and byways is no longer really in my line of sight.

 

I use this analogy because the people standing on the shore often have a different perspective. Although they may say nothing to my face,some are not certain I got in the boat at the right time. “There is another boat later down the river — couldn’t you keep walking / getting treatments until you get to that boat?”   Some see another path on the shore I didn’t try; push for a second  (or in my case third) opinion, a trip to Germany for a special hyper-metabolic tank treatment that worked for a friend, Gerson dietary therapy — you name it. Others wail, “don’t give up, no doctor can predict the length of your life, keep having hope, the next thing might work.” Or that prayer, faith, or an angel in gossamer wings may manifest a miracle at some midnight hour — “radical remission”.  Some have some personal or family experience to fall back on, where perseverance, as they see it, faith, or something else made an individual difference, and desperately hope to transfer that to my situation.  Some simply cannot accept that this time, there  may be no fix, no suggestion, no other potential to  be tried that will change the natural flow of this river to the sea.  What I do know is that, as  I sit in my boat and drift with the current,  the words “don’t give up,” are not unlike hoping for the boat to capsize and for me to somehow find the strength to swim back to shore.  I would feel cold, wet, even more tired than I am, and stuck.

 

And then, there are others, standing silently in witness, holding space for me while walking along the shore as they keep me in sight, simply being present, offering prayer and peace.  It is recognizing the aloneness of the person in the boat in the river, without feeling the need to call them back to one’s own place of comfort — where there is solid ground, pathways, treatments, “battling” a disease, and what we consider normal in the medical environment. It is total acceptance of who the person is and what they have decided — whether it is a decision you would have made at that time for yourself or not. Some send cards of caring or calls, some bring chocolates – or fig newtons–offering comfort, peace, memories,  and even laughter. For even those facing death still like to laugh once in a while.  And perhaps, most important, It is recognizing that “despair” is not the opposite of “hope”.  Sometimes, it’s  acceptance.

 

There is a Jewish prayer called the mi’sheberach, often translated as “the one who blesses”. The prayer is recited whenever the Torah is read and names people by names. In English, the translation calls for a “healing of body and spirit”. In Hebrew, however, the words are a bit ambiguous — a “refuah sh’lemah“,  a healing of completeness. When we understand that the body and the spirit are intrinsically connected, it makes sense that it is impossible to know whether “a complete healing” means a recovery of bodily and/or spiritual health, or the unity of body and spirit in a new state. For those who stand by the shore in witness, watching a person’s journey to his or her life’s ending, the latter meaning may provide as much comfort to the prayer as to the intendee.

 

*with thanks to Harry for scribing this from my handwriting as I have developed neuropathy in some of my left fingers.

Clinical Trials

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Since I was diagnosed with metastatic breast cancer a year and a half ago, I have been on four clinical trials. In fact, the only treatment I’ve had that hasn’t been trial based is the one I’m on now, an oral chemotherapy called Xeloda.  Although I’ve had mixed success personally with trials, I’m a big fan of them and encourage anyone with a challenging disease like cancer, heart disease, Parkinson’s, Alzheimer’s, or others, to check out what’s available on https://clinicaltrials.gov and to ask your doctor.

What is a clinical trial?  Clinical trials study both drugs and other modalities to determine safety and efficacy in humans, and whether or not a particular treatment is superior to what may already be on the market and approved by the relevant government agency (in the case of the U.S., that’s the FDA).   Trials may be for healthy people or for those with a particular disease. For metastatic breast cancer, for example, there are currently more than 700 trials around the world studying various therapies. Some of these are particular to breast cancer, but increasingly, trials are open to more than one kind of cancer, sometimes termed “basket studies.” This is because a particular mutation may occur in more than one type of cancer, and a targeted therapy could address it.

Trials come, generally, in three phases (a fourth phase is sometimes added after a therapy is commercially available).  Phase I is the most experimental as a drug, for example, has not yet been studied in humans. Phase I trials involve a fairly small number of people; different participants will be given different dosages to measure safety, side effects, and efficacy, as well as how a drug is absorbed in the system.   Gradually, this process is refined, and a more mature Phase I trial—I’ve been on two of these—has more participants, although the administration may still vary according to which “arm” of the trial you are in.   Phase II is an expansion of Phase I, where even more participants are enrolled. Finally, Phase III compares the study protocol or drug to an established alternative. In Phase III, you are randomized either to the standard protocol or the new alternative.

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My first trial was a Phase III trial at Dartmouth, and I was randomized to the study drug, a marine based chemotherapy developed in Japan, called eribulin. This lasted about 5 months before the cancer began growing again, and I was removed from the trial.  My second trial was a genomic test, administered out of Ohio State’s James Cancer Center, that identified mutations in my cancer that might be receptive to therapies. (The advantage of this trial was that the test was free, whereas having it done commercially would have been several thousand dollars, probably not reimbursed at that time by insurance.) My third and fourth trials were at Mass General, and both involved a combination of new, not yet on the market targeted drugs, and others that had shown efficacy.   Unfortunately, none of these worked for long in my case (my doctor said they have all “underperformed” relative to expectations), but I have some comfort in knowing that my participation is advancing understanding of new therapies for other patients.

There are advantages and disadvantages to trials.   The main advantage is that you are often (with the exception of Phase III trials when you are randomized to a standard therapy), getting the latest available scientific thinking—you have access to therapies that otherwise are not yet available. A second advantage is that you get very personalized treatment—trial nurses are assigned to each participant, and I have found them, without exception, fantastic to deal with and very proactive.

There are disadvantages, however.  One is time. Often, especially in the earlier phases, you will be subjected to numerous blood draws and tests to determine how the drug is being absorbed (the record for me was 16 vials), sometimes with fasting and sometimes not. As you progress in the trial, these interventions become less frequent, but the schedule of treatment is often quite strict—on the Japanese-sponsored trial I was on, I had to cancel a planned international trip because it fell during a week I was scheduled for treatment, and the only exception allowed was if I had had a medical reason (e.g. low white blood cell counts).   Secondly, trials can be quite strict on who they admit. This includes thresholds on certain blood levels, such as liver enzymes, white cell counts, and even mineral levels such as calcium, phosphorus, and potassium, as well as previous therapies (there is often a limit, for example, on the number of previous chemotherapies that you can have to be a participant in certain trials).   In my case, now that I have brain metastases, a number of trials for which I would otherwise be eligible are off limits as many therapies do not cross the blood-brain barrier.   Guidelines for continuing are also strict–the last trial I was on worked on some of my cancer, but I had a new lesion in my liver, so had to be removed from the trial as any new lesion is generally disqualifying.    Finally, I’ve found that as a patient, you have to do a fair amount of your own research, as institutions generally are aware of and promote only their own trials.   Research is how I found the genomic testing at the James Cancer Center, for example.

I am lucky in that I am near some world premier institutions, all NCI designated cancer centers, including Dartmouth and Mass General, where I’ve had treatment, as well as Dana Farber (and Memorial Sloan Kettering is not that far).   These research hospitals tend to be where the bulk of trials take place, but smaller centers get in on the action as well, especially for Phase III trials.   Having said this, many trials fail to enroll enough participants, and part of the reason for this is knowledge and access—I think some may fear they are being used as human lab rats– but also the complexity of participation. Despite the fact that I’ve already been on trials and the future options may be more limited, I remain committed to participation both for its potential benefits for me personally, and to advance the cause of better treatment for others.

 

 

Decisions about Treatment

Last Thursday, I began two weeks of radiation treatment to my skull base to address some symptoms I’ve been having from the bone metastases in my skull.   Although I’ve switched my primary oncology care to Mass General in Boston, for this five-day-a week regimen I am able to go back to Dartmouth Hitchcock in Lebanon, NH, which is much closer.   Despite the reason for the trip, the drive through the mountains of Vermont in springtime is just glorious.

IMG_1080In today’s modern medical world, a patient often has considerable choice about the type—as well as the duration—of treatments, especially for cancer. Some of these decisions, unfortunately, are not unlike the comment Senator Lindsay Graham made on The Daily Show a few weeks ago about choosing between Donald Trump and Ted Cruz for the Republican nominee for president: “it’s like being shot or being poisoned.”


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Skull-based radiation at Dartmouth–the mask is specially molded to keep the patient absolutely still


I’ve had to make a few of these decisions in my five years of dealing with this disease, including the most recent one that has led to this radiation therapy. When I started having facial pain and double vision about three weeks ago, my oncologist ordered a head MRI and referred me to a radiation oncologist.  The direct symptoms are related to cranial nerves that are being impinged on by metastases in my skull base, but—unfortunately– the MRI also incidentally found some tiny seeds of cancer in the brain itself.   Because of this, I was given the choice of whole brain radiation to deal with everything at once, or a more limited radiation of my skull base to manage the current and potential future nerve-based symptoms.

Whole brain radiation (which I quickly termed “the nuclear option”) carries with it the risk of potential side effects of permanent hair loss, fatigue which can be severe and last up to a year, and –most concerning to me at my age—cognitive aging of up to 10 years. Of course, I might have done just fine and not experienced any of this—or had only mild effects.   But it wasn’t a chance I wanted to take. My choice was to go with the more limited radiation of my skull and to take a “wait and see” approach to the tiny brain metastases, which in any event may be addressed by the medication I’ll resume when the radiation ends.

Such decisions, I have found, are both very challenging, and intensely personal. No one can make them for you, and you can never be certain you have made the “right” choice, so you have to learn to live with ambiguity. Some people instinctively want to throw everything medical science has available, no matter what the potential side effects—the chance at a more extended life, at blowing the cancer to smithereens, at living to see the milestones of children or grandchildren, being well worth the risk and the sacrifice for them. Others prefer a more certain quality of life, albeit a shortened one. In part, this can be a function of age—younger people with children at home, for example, are in a very different situation from those who are older like myself.  But even among people my age, there is variation. I have come to realize that especially at this point in my life, I am a person who errs more on the side of quality, versus the quantity, of life.

An experience early in my treatment for metastatic disease was instructive. I was waiting outside the infusion room at Dartmouth Hitchcock when a middle-aged man was wheeled from the doctor’s area to the waiting room. He was emaciated, tied to tubes and oxygen. Presently, I saw him wheeled into the infusion area for chemotherapy. I remember looking at him and thinking sadly that this man probably did not have even two weeks to live. And I said a silent prayer that I would not find myself in this situation.

For the most difficult decision by far is when to determine that enough is enough—that more treatment has limited efficacy, and taken with the strain it causes on an already taxed body, may actually do more harm than good and hasten, rather than postpone, death.  Sometimes the decision is made for you—impending liver failure, for example, can preclude any further treatment.

In the absence of hard medical constraints, however, many doctors are reluctant to tell patients, “there is nothing more we can do”—because, if the body and mind are willing, there is probably always at least one more option they can try. Sometimes, either the patient or caregivers will push for ever more aggressive treatment even when the chance of efficacy may be small.  Others, like the eloquent Sherri Fillipo, who stopped treatment last summer and lived another nine months until her death in April, choose to end treatment when the side effects become too onerous, and to go into hospice instead.

As the director Elia Kazan wrote, “What’s called a difficult decision is difficult because either way you go there are penalties.” While I hope it is a while off, I know the day may well come when I may have to make a choice between more treatment and stopping treatment.   And I pray for the wisdom and grace to make the decision that—penalties unavoidable—brings, if not a good outcome either way, the most peace of mind.