The Not-So-Gentle Answer: 9. Living with purpose

Recently I was asked “What does your day look like?” and discovered that it is an interesting question. The person thought I just watch videos all day. My answer was a bit vague, because I have so many different days to describe, but not much choice about which one I experience.

Leukaemia and Blood

CLL is a disease of the blood. It occurs because one bone marrow stem cell mutated, once. That cell then reproduced, and eventually spread to all of my bone marrow. Now the only cells my bone marrow makes are cancerous CLL cells; the production of useful blood cells has been crowded out. The red blood cells that I need, not being produced. The white blood cells that I need (neutrophils) are not being produced. The platelets that I need, not being produced.

The next problem is that the useless CLL cells are immortal. They never die. They just keep on floating around my blood stream, keep accumulating in ever greater numbers, making my heart work harder and harder to push more and more useless cells through my veins.

This all leads to fatigue and lethargy. A lack of red cells and haemoglobin means less oxygen for your body to burn to keep everything ticking over. A lack of platelets can also leave you tired, perhaps because too much leaks out. A lack of neutrophils can also leave you tired, as your body fights off the usual everyday pathogens, but without the necessary resources. The excessive lymphocytes cruising around displace useful cells, making everything much less efficient.

What does my day look like?

  • With very low platelets (thrombocytopenia) I bleed spontaneously.
  • At low platelets, but not very low, every time I bump the furniture, I get a huge bruise. Any scrape or cut is going to be very hard to stop bleeding. Mostly I stay at home on these days.
  • With very low neutrophils (neutropenia), I am severely at risk of infection. I stay out of anywhere with too many people, and there are days when it is smartest to just stay at home.
  • With very low haemoglobin (haemoglobulanaemia), I can think less and less, walk less and less. I make bad decisions, and I sleep a lot.
  • When things are at their worst, I mostly sleep, or doze in my chair.

Haemoglobin

It is worth unpacking the haemoglobin line a little more.

  • The normal range for haemoglobin is 130-180 grams per litre.
  • You aren’t allowed to give blood with haemoglobin less than 128 g/L.
  • They try to keep me at 100 g/L or more. This permits a mostly normal life, although you will be in the “training zone” just by walking slowly around the room. Your brain feels normal, but you are actually slightly off your game (sometimes very badly off your game).
  • At 95 g/L, you feel a bit stupid. You look a bit pale. I tend to have a muscle tremor.
  • At 90 g/L, it can take hours to read a single page of a book; concentration is almost impossible, and following the plot of a movie is getting harder. The muscle tremor is obvious, and I tend to drop small things, like tablets (Treatment: 2 units of packed cells.)
  • At 85 g/L, the DVD remote control is too complicated to use, and walking around is difficult. When this happens to me, I have no colour in my skin; I go as white as a sheet of paper.
  • Below 80 g/L, I have serious problems. Go to hospital.
  • Apparently, if absolutely everything else is normal (i.e. not me), it is possible to function at 40 g/L.  I don’t ever want to know what my body is like at 40 g/L.

What does my day look like?
Below a certain point, <95 g/L, my day looks like the NGPH Chemo Day Unit, getting a blood transfusion. Above 100 g/L, my days have more chance of being “normal”.

“Do you watch a lot of videos?”

No, not really. When I have enough oxygen (haemoglobin), I putter along trying to write software (it’s what I’ve done every day for 35 years, after all) or surf the web. By the time the haemoglobin drops to the point where surfing the web is too hard, the DVD is too complicated to operate.

“So, you could work from home, right?”

Actually, no. The skill I would be selling simply isn’t available. The highly unpredictable state of my blood means that I can’t predict, from one day to the next, just how much brain I have available; how capable I am of writing software.

Search for “chemo brain“, plenty of cancer patients complain of it (and, fortunately, I’m not talking about the permanent PCCI variety).

Even on a “good” day, when my haemoglobin is better than 100 g/L, I’m only operating at about 50% of my capabilities compared to when my haemoglobin is in the normal range (130..180 g/L). And that’s a good day: usually it is less. It is astonishing just how rapidly and directly haemoglobin levels affect the complexity levels I can think at. The muscle tremor mentioned elsewhere also messes with my typing, and mouse clicks, doubling up and worse, which gets old really fast.

Back in 2010, when I didn’t know if “chemo brain” was permanent or not, it was scary to contemplate. A huge chunk of my self-definition is tied up with 35 years of creativity and writing software. To think it was largely gone was horrible to contemplate.

And, it turns out, I wrote a complete retro-computing cross compiler tool chain in that time, by using TDD and exploiting the highs and lows in the cycle. (I was looking for a project that, if I needed to, I could throw away a year’s worth of commits. The 1979 UCSD P-System was perfect.)  I had made a series of change sets, figured out and made brief notes how to solve each one, and written the automated test to see if it worked. Then, when on chemo (but awake) I would work on these changes sets. Some tasks, even though I remembered working out how to solve them, and even having my own
notes, I couldn’t get the test to pass, not matter how hard I tried. (Think about that: objective evidence that your brain is broken is scary.) So I moved on to easier change sets, until I found stuff I could work on; sometimes it was the boring repetetive work I couldn’t stand when I was well, but was just right when I as at my lowest ebb. As I recovered between doses of chemo (a 4 day on, 24 day off cycle) the complexity levels would go up, and I could once again tackle the more interesting change sets.

In light of the 2010 experence, and things getting back to normal once I was off the drugs, this year has been less scary. But the uncertainty of the haemoglobin levels makes coding (writing software) a daily adventure. Everything looks like a software program to me, and so I usually write some, even if its only a few lines, every day. That’s just how it is.

One coding thing that is absent at present is getting into flow state. This is a bit like nantien for coders. While it isn’t something that is guaranteed to happen, it is certainly an euphoric experience when it does, but that state just isn’t happening at the moment, even on the very best of days.

My login screen has a quote from a CodeCon a few years ago:

“Peter, when do you think you will stop coding?”
“When you pry the keyboard from my cold dead fingers”

There are days this sounds eerily prophetic, and I think of removing it. And there are other days when it doesn’t bother me, because I’m going to survive this, and write tonnes more software with my remaining 30 years.

Blood Tests

The most significant driving force in my day is the twice-a-week blood tests. Every Monday and Thursday I have an FBC (full blood count), an EUC (electrolytes, urea, creatinine), and a “group and hold”.  I often have some idea of what the results are likely to be from how I feel, and how pale I look. Mondays can be quite bad.

The FBC tells us how much haemoglobin I have, how many platelets I have, and how many neutrophils I have.

  • Haemoglobin carries oxygen, and if it gets too low, I have less energy and much dumber as my brain has less to work with (brains use a tonne of oxygen).
  • Platelets plug holes, and if they get really low you bleed spontaneously.
  • The neutrophils are a significant chunk of the immune system, and I live at or near zero most of the time.

The EUC is for various infection markers, just in case I need to go back to hospital for yet more intravenous antibiotics.

The group and hold means: determine the blood group, and arrange for either a bag of pooled platelets or up to two bags of packed cells (haemoglobin) to be on-hold for the next day. The platelets cross match is good for 30 days, the packed cells cross match is only good for three days.

It is possible to have so many blood transfusions that your blood type changes, which is why they have to test every time, and not just go by historical data (and the local pathology lab has plenty of historical data on me).

I usually get a call on Monday and Thursday afternoons, letting me know the test results, and whether or not I need to got to the NGPH Chemo Day Unit to have another transfusion.

On Tuesdays and Fridays, when I don’t have to go to the NGPH Chemo Day Unit, it feels like a holiday. The problem is, I have rarely organised some specific activity to do, because I had to be prepared to spend 5 hours at the hospital. Also, not needing a transfusion is not the same as being normal; I could still be having a difficult time. The next blood test will tell.

Chemo Day Unit

The chemo day unit does a whole bunch of things besides chemotherapy drug delivery. They deliver infusions of numerous kinds, including blood transfusions.

When I need platelets, this only takes about 30 minutes to transfuse, but there is set-up and tear-down time as well, so I tend to be at the hospital for about and hour and a half, if platelets are all I need.

When I need packed cells, it takes 2.5 hours per bag. I usually need two bags of packed cells at a time, so I’m in the Chemo Unit for 5 hours, plus set-up and tear-down; say 6 hours total.

Once every 4 weeks I also get IVIg therapy, which is three bottles of infusion, and takes one hour per bottle. Frequently, this will double up on my packed cells transfusions, meaning that I spend another day that week at the Chemo Unit.

What does my day look like?
For a platelets transfusion, I usually read, it’s so quick. If I’m too tired, I’ll sleep; that’s why they have comfy chairs for the patients.

When I’m in the chemo day unit for 5+ hours, I take my laptop and mobile broadband. This means I can send and receive email, or surf the web, or Internet chat. Towards the end of a packed cells transfusion I will start feeling much better, and can even start to noodle my way back into writing some software.

If I’m actually having chemotherapy, the shape of my day is very different, see below.

Infection

Because I have, basically, no immune system, there is always a risk that I will come down with an infection. It is always an interesting infection, and my body mostly doesn’t repeat the same infection twice.

The instructions from my oncologist are simple: if my temperature is over 38C, I go to Emergency Department at the local district hospital and tell the triage nurse “I am neutropenic and febrile 38C” and in about 3 seconds I’m queue jumped into the treatment area. Quoting my patient records code from memory, I’m admitted to an ED isolation room in under 5 minutes, and they will have IV antibiotics running into me within 30 minutes.

Hospitals are full of sick people. The isolation room isn’t to protect staff and other patients from my infection, it is to protect me from them. Also, my infection is inevitably something unusual, because I’m susceptible to infections that people with a “normal” immune system simply never catch. The only people who are at risk from me are under 18 months old, so I don’t go near babies or infants at the moment.

So, from the isolation room in the Emergency Department, within about an hour, I will be wheeled to an isolation room on the ward. These often have dedicated air conditioning controls, so that the air always blows out of the room, rather than inwards carrying infection risks. Until the IV antibiotics start killing the infection, my temperature keeps rising, I’m getting progressively less lucid, less capable, less
competent. This is why MT and I have mutual reciprocal medical powers of attorney.

Knowing that an infection is always possible, and knowing it will be for about a week (or, in one case, 4 weeks) we usually have a “go bag” half ready, with a couple of days of clothes, wet pack, etc. When we have a better idea of what’s happening, my wife and son ferry things back and forth on their daily hospital visits.

In hospital, my day is very constrained. Until the IV antibiotics start working, I still have a fever and feel ache-y and unwell. I don’t read, or surf the web, or watch TV. Mostly I sleep or doze.

When the fever breaks, then I can start to watch DVDs, or surf the web, and I use my laptop for most of it. While I may feel OK, it is actually 2 or 3 days before I am able to read a book; it can take even longer before I have enough brain to write software (and it won’t be very good, TDD for the win). However, I usually can’t go home immediately at this point, because the antibiotics need to be tailored to my specific infection, and this depends on blood cultures and other tests done in the Emergency Department, that take several days to obtain results for. Usually it will take a month or two to get over an infection, and I leave hospital with a fist full of prescriptions for oral antibiotics: except when only IV antibiotics will do.

They do try to get me out of hospital, and away from all those sick people, as fast as possible, even though the infection is far from resolved. But “as fast as possible” is usually 3 or 4 days from when they start actually trying to toss me out.

Home Nursing

If home delivered IV antibiotics are required to treat an infection, there are services available from the hospital, and a nurse will visit me at home daily to deliver the infusion, or change the tank on the portable infuser at my waist.

The day is very different when you have no control of the timing of when the nurses will arrive. And even if you do have some idea, their constantly changing patient roster means that the timing is highly unpredictable, even for them.

There are also times when I am too unwell to drive, or taking serious drugs that make it unsafe to drive. This makes it difficult to go to a pathology collection center for my bi-weekly blood tests. However, once a again, there are home visit services, and they come to be to collect the samples. When they come, of course, is out of my control, although they do try to come before noon, so the blood products can be ready 8:00AM the next day.

What does my day look like?
After an infection, pretty much I’m sitting in my chair, with my laptop; or I’m dozing or sleeping. I’ll do quite a lot of sleeping when I’m first recovering from an infection. The laptop doesn’t see of lot of code being written at these times, just web surfing or the occasional DVD.

This is, of course, a progressive improvement. By the time the IV antibiotics course is done, I’m back to “normal” days.

Air Conditioning

Due to my very low neutrophils, I have to stay away from places that are likely to spread airborne infections. As a rule of thumb, this means shared air conditioning.

Places I have to avoid include: shopping malls, commuting on trains, city office blocks, picture theatres, church services, and public swimming pools.

I don’t miss shopping malls. When I do go, and that’s rare, I wear a mask.  Hiking 200m or 500m or 1000m around a shopping mall requires frequent rest stops about every 50m, assuming the management has been kind enough to supply a “husband chair” anywhere nearby. On a bad day, I could use a mobility scooter, free from the enquiries desk, but if I’m that bad, I just don’t go.

Woodwork

One of the things I would like to do, if only it were possible, is to putter in my shed doing some light woodwork. It is a wonderful feeling to take a pile of anonymous bits of wood, and produce something solid and touchable and beautiful.

Unfortunately, due to chronically low platelets, I risk bleeding copiously from every little splinter. Worse, wood isn’t particularly clean, and with my low neutrophils this means I also risk an infection from every little splinter.

Recently, a friend suggested using kevlar wood carver’s gloves. This would certainly reduce the risk of splinters, so I obtained a pair via mail order. Now all I have to do is find a day when my energy levels are high enough to do some careful woodwork, and see if the gloves live up to their potential.

Chemotherapy

First, understand that there are thousands of different cancers, and hundreds of different chemo drugs. And every body reacts differently and uniquely to the cancer and the prescribed drugs.

I don’t just feel bad on chemo.  Chemo smashes me through the floor and half-way to hell. And then stomps on me.

The drugs are rarely specific, and take out not only the bad cancer cells, but frequently a significant number of good cells as well. There is a high rate of “friendly fire”. The body shuts down everything that is not essential, and fights for its life. Fights very hard.  Non essential things include the brain and the digestive system. At its worst, I sleep 20 hours a day, more common in 2010 was to sleep 14 hours each day. Days are very short when you are only awake for 4 to 10 hours.

Another thing that happens is that you get “chemo tired” which is very different than normal “sleepy tired”. Imagine being bone-crushingly tired, so tired it feels like bits of you are going to fall off, and at the same time be wide awake. This feeling happens in the “off” time between monthly doses of chemo drugs.

What does my day looks like?
It looks like sleeping in the chemo day unit, or sleeping at home. Days are very short when you are only awake for 4 to 10 hours.

“So, what does a good day look like?”

Software:
There are days I just stay in and write software. When the brain is working, this can be very satisfying. I’m working on open source projects that I care about, and want to work on. Sometimes I work on bug fixes or requested enhancements to some of my existing projects. The main focus, despite numerous distractions, is the next major release of my magnum opus Aegis.

Visitors:
I really like vistors, the day is always different when they come, and it keeps me connected with various communities that I’m part of. When friends come to visit, sometimes quite long distances, it’s great to have a chat. We could maybe go to a quiet cafe, or get take-away for lunch. After they leave, there is no energy left in the budget, and the likely result is a “nanna nap” all afternoon.

The cost is being “on”, of listening and processing, of wanting to step up and and be active and interested in the conversation. And, usually, be stimulated by the new ideas the other person brings.  This all comes at the cost of borrowing energy I have to pay back later, but the energy I get from the visitors is worth it, too.

The Men’s Shed:
I vist the local Kincumber Men’s Shed somewhere between once a week and once a month, depending on neutrophils. Usually I take something from the bakery and drop in for morning tea, and have a natter with the guys. I drop in on the less busy days, say Tuesday and Wednesday, when there are about ten people there, often less, meaning lower risk.

I can’t do any woodwork there, of course, for the same reason I can’t do any at home, which is a pity. But the guys are always happy to see me, and that’s a good feeling.

Kincumber Mountain:
When it’s a really good day, and I’m feeling cabin fever, I have a spot on Kincumber mountain, about 10 minutes drive from home. The spot is about 50m from the closest point I can park the car, and 5 or 6 metres vertical rise. I carry my laptop backpack, a folding chair, and a beach shade tent. It’s “only” 50m, but it is at the edge of my physical endurance (did I mention this is on a very good day?) and when I get
there, I already need a rest. Break out the folding chair, catch my breath until I can start on the shade tent, it takes about 5 minutes to erect. Once that’s all done, and the comfy chair is in the shade tent (and the corners weighted with rocks if it’s breezey) I have shade for reading in (I can’t read with direct sunlight on paper, never have) or even using the laptop. I have about 5 hours battery life if I don’t use mobile broadband and 2 or 3 if I do (this spot has 3 bars of mobile broadband reception). The folding chair is a circular “papa san” style one, and it doesn’t joggle my elbows when I’m typing.

The great thing about this spot is that I can’t see suburbia at all, just trees and more trees, mostly eucalypts, angopheras and xanthoreas. And almost no road noise gets through, either. It feels enough like camping that it recharges my qi, and gives me the energy that going camping does. (Err, “did”, I can’t hike anywhere at the moment. But
also “will”, in the sense that I will go bush walking and camping again when I’m over this).

ZBK Kempo Karate:
If it’s a training day at my dojo, and my blood tests say I have a non-zero fraction of an immune system, and I have the energy, I’ll go along to an evening session, and take my camera. The fitness portion of the programme leaves me tired just watching it. The fitness usually has some sparing in it, and I wander the floor looking for a good shot; I am at no risk of being hurt doing this, they guys’ environmental awareness means
they always know where I am, even as they are going at each other hammer-and-tongs. My heart rate is in the training zone just walking the floor taking photos.

The self defence portion of the programme is the good bit. I can and do teach during this portion. And while I can’t demonstrate actual blocks and strikes, etc, because I’ll bruise for a certainty, I can always borrow an advanced student briefly to demonstrate. Working with very early grades I need not worry so much, technique alone will carry
the day, and it’s technique I’m teaching (I have lost a huge amount of muscle mass, it’s the leukaema, again). Standing with the other black belts for bow-in and bow-out is still a buzz, it will be a while before it becomes routine, I suspect.

Karate is another place I can go where everyone is pleased to see me. But more than that, I’m not just a spectator, I am actually a participant; and when so much has been taken away from me by the leukaemia, this is a significant thing that I still have.

I accept this gift.

 

——
You may be interested in reading the earlier Not-So-Gentle episodes: (1) Introduction, (2) CLL, (3) Neutropenia, (4) Platelets, (5) Comensals, (6) Infections, (7) Migraine, (8) I am dying.