How much do I want to know?

 The internet is a wonderful thing. We all have several orders of magnitude of valuable information easily available to us than was the case twenty years ago. I remember when Wikipedia first came out and the traditionalists pooh-poohed it because it contained a few factual errors. Clearly the fact that many of these traditionalists had just lost their snobbery advantage over the rest of us had nothing to do with it. Most of us quickly learned to rely on Wikipedia as a useful source, far more extensive and easy to access than anything we had before, and also learned that if the information we required really needed to be accurate we should find a corroborating source.

 

Then came Google and our available knowledge leapt forward even more quickly. And it seems that now we are on the cusp of yet another transformation as ChatBots mature. If only school curricula had developed at the same pace as our new internet schools, humanity would have been able to advance even more quickly than we have. But many children still labour in classrooms being taught to remember dull facts that a simple click or two would render accessible. Still, we are going forwards.

 

From the start of my illness, I have been torn about how much to use Google and other sources to try to answer questions that I cannot help being curious about. The two biggest one are “how long” and “how (does this type of cancer typically develop)”. So far I have resisted the urge to consult Google, the main reason being that I prefer to trust my doctors. Yet my doctors have steadfastly refused to even hazard guesses for either of the questions.

 

Two sad and related trends in America are involved here. The first is that everyone seems to be a pocket health expert, ready to offer opinions on matters far beyond their education and experience. Partly this is because people do not seem to trust doctors. Partly it is because everybody has a story about how some cancer or other developed in a friend or acquaintance. And partly it is because of Google. They is a lot of rubbish available via the internet, but a lot of reliable material too. The problem is that most of this reliable material is only reliable in the hands of subject matter experts. For some reason that does not seem to give pause for concern or downgrading rash conclusions.

 

The second trend is about litigation. Every third advert on TV (that is not trying to plug some drug) is from an ambulance chasing lawyer, promising riches to anyone who has had an accident of any kind. Doctors and hospitals are among the primary targets of these unscrupulous lawyers, and that has consequences for how hospitals judge risks, how doctors are required to behave and communicate, and how typical people struggle to trust doctors. Even if we can trust them, in many cases we will be quick to sue them if the opportunity arises. It is no wonder that the health care system becomes so expensive when litigation is among the largest cost categories of physicians and litigation risk is so big that professionals have to pool together to share the risk, and then those pooled operations ramp up their margins to offset the risk and because their competition is reduced.

 

One consequence of not fully trusting our doctors is a rebound to our emotions. If we might want to sue we listen to stories from anyone and Google anything. This makes us more fearful than we might be and perhaps more angry too. I think one of the best decisions we made at the beginning of this journey was to follow a different path, one that prioritised our emotional well-being and especially looked to move past anger. I guess if a doctor cuts off the wrong side of my brain then my wife might sue, but that prospect is a long way from our everyday thoughts, and I believe that to be a good thing.

 

Still, on balance I would prefer to know the answers to the big two questions and to others as well. Perhaps it is partly because of the distrustful culture here, but so far we have been given no answers at all. I prefer to trust my doctors and ascribe the reluctance to answer the questions to what they tell me, which is that every case is unique and averages are almost meaningless.

 

I could push back harder, and perhaps in the future I will. I believe I have one reasonable justification. I know nothing about medicine, but I am a mathematician, one who specialised in the applicable aspects including probability and distributions, and so I do understand averages, and in my case I could interpret some types of information so that they really are not so meaningless after all. The doctors should feel free to push back again, quoting medical differences between cases that potentially undermine lazy averages even further, but I believe I am qualified to have that discussion.

 

What I will not do is consult Google. For one thing I am not very good at that type of research. For another I don’t trust myself to stay objective on a subject so critical – my analysis is too likely to be flawed. And for another I would need to find studies that reduced the medical aspects to language I could understand (and therefore are strictly limited to cancers very like my own) but sophisticated in their mathematical analysis.

 

I have found a few good proxies. My sister knows a little bit about medicine, a bit about statistics and a lot about internet research. She also is a good judge of what it is healthy for me to know and how to communicate it. I am lucky to have her on my side because I believe such a combination of skills to be rare. My daughter and my wife can also both add to the skill set so can be even better as a team. It is good that MSK allows family to listen in to meetings, so we can all hear opinions first hand.

 

I also realise that I must be careful what and how I ask questions. The quality of communication among the medical professionals I have encountered has been mixed. Some have strayed beyond their competence and others have been thoughtless in how they share information. At one point a rather junior nurse started reading out to me the technical results of an MRI, something that neither of us could interpret reliably but could do a lot of damage to my emotional state. I managed to stop her in time and made a resolution to be alert for that situation again.

 

By contrast, both my surgeons and both my neurologists have been excellent communicators, clear and open and straightforward. I have been able to interpret when they have resorted to code (“sometimes we are looking at years, and sometimes months”). The only issue is the rush to hide behind the claim that cases are so different rather than attempt to give an answer. And on balance I trust that this reluctance is usually reasonable and in my own interest.

 

But this may change once genuine trade-offs enter the equation. So far, all the major decisions in the process have been very clear and well-explained. Any risks we have taken and discomfort I have suffered have been far outweighed by potential benefits. That may be different later, and especially if there are potential gaps between the preferences of me and of my family. Then the doctors will really need to use their skills, and I hope they can avoid being constrained by the US cultural constraints. And we will also have had to think through our own preferences. What do I really want to know?

 

I think I know the answer for myself, though that may change as the disease evolves and I understand we should agree as a family. We have doctors we can trust for the medical wisdom, communication skills and hopefully also their ability to interpret probabilities. I would like to know everything possible from these people. From Google, or interns, or people with anecdotes, thanks but no thanks. 

Tips During Treatment

Before I was diagnosed last year, I knew very little about the practical aspects of cancer. I had seen a few acquaintances afflicted by different forms of the disease, but somehow their experience had always been at a distance from me. Probably I was not curious or empathetic enough, but I sense also that people tended not to talk about their experience very easily.

 

Now I am in the heart of a treatment program. I always knew that cancer came in many forms and followed many paths. I may be unusual in being rather functional during treatment, but I don’t know that really. I don’t even have much idea how my own cancer is likely to develop, but I certainly have picked up a few tips that seem to work for me, and which could also be helpful to carers.

 

I am more than halfway through an intense six-week course of oral chemotherapy and radiation therapy. The chemotherapy is a nightly pill, and it seems very general and untargeted, probably because anything else for the brain may not be feasible. The radiotherapy involves a daily trip to a facility and is surely very targeted. The facility has rooms dedicated to different types of cancer. I lie on a slab and both the slab and the machine above it can be rotated so that the radiation is applied as precisely as possible. I also wear a personalised mask, more like a cage, that was made for me when this started. It is tight and I can imagine is a problem for anyone with claustrophobia, but I have no real trouble with lying still for extended periods.

 

My clinic appointments tend to be early in the morning. I grab a cup of tea and something quick like a banana or a yoghurt, take my morning medication and get out of the door like a commuter. I will usually have a little nausea on my commute, but nothing too unpleasant. I walk for five minutes to the subway, then take the F train for four express stops to 63^rd and Lex in Manhattan, then walk two avenues and four streets to the MSK facility.

 

My only persistent symptom so far is a serious loss of peripheral vision on my left side. The operation to remove the tumour just before Christmas made this a lot worse (I am not complaining, it was a fair trade). It has just started to show a bit of improvement, with double vision largely absent now, but the symptom is hugely frustrating, even though by now I can get around without bumping into two many people or objects or speeding cars. I can also read, which helps pass the time in waiting rooms. Luckily this is not usually too long, as all medical facilities tend to run closer to schedule early in the morning.

 

On Fridays I hang around to have blood taken at their lab, and on Tuesdays I meet the lead radiation doctor and his nurse so they can check how things are going, give me tips and sometimes alter the medication regime. Every three weeks I meet the doctor and nurse leading my overall treatment, and my therapy appointment is also every three weeks. Occasionally I have additional appointments for scans like an MRI. Otherwise the rest of the day is my own.

 

I have other pills to take during the day, and then I finish the day with an anti-nausea pill followed by the oral chemo pill just before sleeping, both of which work better on an empty stomach. One tip I can pass on is to ask the nurses about the best time of day to take all the medication. Sometimes a time is mandated and will appear on the pill bottle, but it seems that almost all pills have some side-effect risks and these are minimised by choosing a particular time of day, and the nurses have lots of experience to help if I remember to ask.

 

It is common that one pill is prescribed mainly to counter the ill-effects of another pill, and this is another area worthy of discussion with medical staff. They will often prescribe steroids, and in some situations these are essential, but all my MSK team know by now that I tend to react strongly to steroids and share my wish to avoid them if we can. But the trade-off may be some further temporary worsening of the eyesight, or more fatigue and nausea. Another trade-off for me is between anti-nausea pills and stool softeners, and I am currently in a mindset to put up with the nausea to avoid too much constipation. 

 

So far nausea has been my main problem. It tends to rise during the afternoons, and it depends on the medication for each day and other random factors. I suspect it is a bit like being pregnant, though I have managed to avoid any vomiting so far. I have reverse food cravings, in that stuff I normally love, notably rich and sweet foods, make me feel sick just to contemplate. So I restrict myself mainly to simpler foods such as starches with some meat and fruits. I don’t fully understand the reason, but while on radiation I have to avoid many foods that normally I would consider very healthy, such as vitamin supplements or blueberries.

 

I think I have found something of an antidote to nausea, and that is to eat. It feels counter-intuitive, because I don’t taste well and my mind tells me that if I eat then I will probably soon vomit, but I have learned that, at least for me, I can keep stuff down and that eating enough reduces the nausea.

 

In a similar way, another antidote to both nausea and lethargy is activity. If I can distract myself by doing stuff then I am les likely just to sit around and feel sorry for myself and allow the nausea to grow and the sleepiness to progress beyond occasional healthy naps. While I am doing something else, something even as mundane as the washing and ironing, then I don’t have time to feel too nauseous. I guess this would not work for everyone, and activity has to be balanced against risks of falls or seizures and other serious complications, but I am certainly finding it helpful to push myself a bit. I have choir rehearsals three weeknights per week, two of them in Manhattan, and the doctor has allowed me to start swimming again. I usually have an activity to look forward to do, and that also avoids the problem of dragging days and helps the impression of approaching the finish line of the treatment.

 

For me, independence is also a benefit, because that supports more activity and gives me confidence that I can do more, and safely. There is a trade-off here with the doctors and nurses, who are understandably risk-averse, but also with my wife. I have willingly allowed my wife to put a tracker in my wallet and to agree to send texts every time I reach the end of a journey, as a fair cost of the independence she allows and I value. 

 

Another tip is to prepare for the sessions with doctors and nurses. There are only so many scans they can afford and live tests they can carry out, so they must rely on my self-assessment, especially for things like the eyesight impediment. Last week I did not really prepare for a session, and it was a frustrating day for my vision, so I reported a deterioration, which I was lucky did not land me on steroids. I made a point of more rigorous self-assessment of the next couple of days and was able to conclude that the double vision had stopped and to pass this good news on to the nurse.

 

A last tip is to try hard to care for my carers, especially my wife. It is too easy to fall into a self-pitying mindset, and a good carer will willingly concur that this is all about me. But it isn’t; in many ways it is just as hard for her. The wallet tracker is an example of something that is easy to concede, but there are other areas too. I don’t fancy food so going to a restaurant does not currently have much appeal to me, but I should try to think about her desires as well.  It all helps her to help me, and tends to reduce my nausea as well.

 

I won’t pretend that my treatment is any fun, but as usual it is not hard to find reasons to be thankful. I am lucky that the treatment has an end date to count down towards. I am able to hold down my food and my medication. The daily misery on the slab is over in twenty minutes, and I can imagine plenty of Bach or other music to help the time seem to go faster. I am able to be independent and to stay active. I have the best medical care and the best care at home. The gospels from the last three Sundays have been relevant and inspiring. Thankfulness is always a great antidote.            

Patience, Patients

 A full six months after noticing something strange with my eyesight and after three spells in hospitals including surgeries, I am finally into a treatment regime for my brain cancer. For six weeks I must take a nightly pill, full of gunk toxic enough to destroy cancer cells but then necessarily attacking my body so that nausea sometimes arrives despite my anti-nausea pill. On the weekdays of the same six weeks I commute into the city to spend fifteen minutes lying on a machine that dispenses different gunk, this time radioactive gunk, into my brain. This part of the treatment has been fairly easy so far but is seemingly cumulative in its effect, so I can expect increasing fatigue and perhaps further worsening of my vision, hopefully temporary and not combined with anything new and even more foreboding.

 

Perhaps six weeks is chosen by the medical fraternity as a period short enough to allow the gunk to do its work before worse things happen inside me, and a period of time I can be patient enough to endure while envisioning an end and retaining hope. So far it seems to be working.

 

This phase has allowed me to observe more of my fellow patients and to assess their attitudes in case they might help me a bit. The hospital stays were so frantic that I did not really form any bond with fellow patients, and I suspect that is by design. The problem with cancer is that most of us do not recover. If you are running a maternity ward you want the expectant mums to bond, in order to share practical experiences of what works, to build strength together and perhaps even to create friendships that can be fruitful after the hospital experience. Only if things go terribly wrong would you want to maintain a distance. If your ward was for people with broken limbs, you would also encourage companionship, sure in the knowledge that while recovery can be slow and painful, there is at least a positive end point that most can reach and which might be reached more quickly with some optimism and teamwork.

 

My cancer wards were very different. We kept being moved about and I got the sense that interaction between patients was not encouraged. The design of the wards even seemed to discourage families from any interaction with each other. Perhaps the ward staff have learned that this is the best way to keep the atmosphere from being too negative.

 

It is the same at the radiation clinic. The treatment rooms are individual and spaced well apart, and my clinic is well managed so that the time in the waiting room each day is mercifully short. But I do observe fellow patients, and nobody seems inclined to start a conversation. That might be just as well. Some people are clearly angry and suffering pain; striking up a friendship with those folk would probably benefit nobody, even in the unlikely event that the other party was in a mood for chatter.

 

Instead, most of us choose an attitude of stoic patience. This is something we must endure so we do it on autopilot, much like an unwelcome wait in a crowded departure lounge. Try to be kind to the staff, who are only doing their best in a situation that is no fun for them either. Don’t think too hard about outcomes or become obsessed with things we could complain about, because such thoughts and actions will only prolong the experience and make it less pleasant. No, stoic patience works best, with some distraction like a book to read, and gratitude when waiting times usually turn out to be short. I have been lucky enough so far to have felt well enough to visit the clinic unaccompanied, and I notice that the carers of those less fortunate tend to collude in creating the same stoic and untalkative atmosphere.

 

This observation lies behind what I have some hope may become another turning point for me. This stoic patience may be necessary for a time but it might be overrated, and a bit of balancing impatience might be effective. I don’t mean the impatience from anger or blaming or complaining. I mean the impatience that can lead to minor triumphs and some positive hope. I believe that this has to start with the patient because, for all their kindness and wonderful intentions, the stories and cheerleading of friends and family do not create a lot of hope, at least for me.

 

Here, the dreaded steroids can be an asset. While drugged up, I had no problem with getting things done and facing the future openly and being impatient. After my last operation, I was placed on a huge dose of steroids (no doubt necessarily), and I woke up on Christmas Eve determined to get out of the place. With some smart collusion from my wife, some obnoxious tactics on my own part, and the luck that the time of year must have given some incentive to the staff, it worked and I was discharged, and I am sure that this accelerated my recovery. In the hospital they were talking about sending me for days to an inpatient physical therapy clinic, and I am sure that would have been counterproductive.

 

I am aware that I am taking calculated risks – with my compromised vision I could surely bump into something damaging or even fall – but I am also convinced that I have to live my life as fully as I can, even during treatment. That involves some impatience, with my wife as well as the medical staff, though I am aware that there is a limit and in many situations caution and patience make sense. But I have been steroid-free for a month now, so I know that it is sane me not mad me making these judgements.

 

On Saturday night we visited friends for a meal at their apartment and met their new baby. We did not shy away from talking about cancer, but we also did not let it dominate the evening (the baby helped with that). We were lucky in that my nausea was not too bad. The overall effect of the evening was to change the subject from endurance of treatment, and that provided a way to envisage a time where the treatment was no longer the point of existence. Yesterday morning I sat at the start of mass and suddenly felt a peaceful happiness coursing through my body. This was not the steroid-fed happiness of yore but something more useful. It was hope.

 

The hope is realistic – I am highly unlikely to be cured and any period that we can enjoy of healthy happiness will probably not last all that long. But now I can envision that period and be hopeful that it can arrive, maybe soon after the end of the current burst of treatment. I am happy that my wife is showing such courage and practical sense. I am thankful that I can still sing and have friends who are willing to sing with me. I can still read, even when my eyesight is at its worst. In four more weeks the cycle of treatment will end and I am hopeful I can endure that period without too much misery. Of course there are no guarantees, and part of the stoic patient attitude is about being prepared for setbacks.

 

So patience is very much a balancing act for patients and their carers. Angry impatience only makes things worse, and a certain stoicism and reluctance to socialise with fellow sufferers is probably a good defence against negative thoughts and builds some ability to accept inevitable setbacks. But an attitude dominated by patience can become self-fulfilling as well, and we can drift into a life whose only purpose can become being a patient patient. Some impatience, helped by drugs if necessary but even better without artificial help, can point to a hopeful path forward that can be believed in. Realistic but hopeful goals can offer energy and make attainment more likely too.

 

I hope I am striking this balance in a way that can be effective for me to give the best shot at some fruitful months ahead. On our parallel journeys to separate destinations, that must be a challenge for my wife too. It might be one advantage of having a care quarterback too, because he can see the whole picture and communicate a storyline that balances hope and realism. It is a source of comfort that he explicitly supports our goal of achieving a trip to Europe later in the spring. I hope that can happen, while keeping some reserves of stoic patience in the tank in case of setbacks.