34 To live and to die.

Yesterday we went to the lab for the nth time so that the tech might gather some of my mucky blood for analysis. My last trip to the lab was fine, but the results were incomplete. Apparently there was a problem with one of the samples that had to be shipped to Victoria so the results weren’t available to us. Samples requiring electrophoresis in their analysis are sent to Victoria. Apparently there have been some issues with the transport of samples. Maybe the samples coagulate on route, maybe they get lost. Who knows. All I know is that the results of these lab tests tell me how I’m doing and can give me confidence in asking the right questions of my oncology team. It’s okay this time because I just got a new set of tests. They’d better come back readable, that’s all I have to say about that. Hear me VIHA? Now, on to more important things.

I wrote this at the end of my blog post entitled Overdiagnosis? I promised to get back to it so here we go.

In my view, my destiny is to die. Like all other living things on this planet, living and dying are the same process and life depends on death for its continuation. No death, no life. I feel that in my very bones! That’s where my oncology team is doing battle with my own body to try to keep me alive a while longer. Of course, eventually whatever the oncology team will do won’t be enough and I’ll die.

So, how exactly does the body shut down as it’s dying? Cancer may very well be one (a very important one) of the mechanisms that is ‘natural’ in its role in having us die. Maybe cancer is not the pathological evil that it’s made out to be. What would happen if cancer did not exist? How would we die then? What does it mean to die of natural causes? How can we figure that out?…I think science and medicine have a lot to learn about us yet.

So, let me address one question at a time. Our bodies are ephemeral things, programmed to ‘die’, which means programmed to return them to the pool of raw material available to other organisms as they organize matter into various structures, themselves programmed to ‘die’. The body ‘shuts down’ in a number of ways depending on circumstance at the time of death. If you get shot in the heart, the process is quick, but immediately cells ‘know’ what’s going on and act accordingly. When my mother died, the nurse in the care home where she lived explained that staff can tell when a person is close to death by looking at their feet and legs. The weaker the heart gets, the less it can pump blood to the extremities. That means that the feet, then the legs show progressive signs of blood loss, losing colour and tone. Maybe that will happen to me. Whatever the circumstances, our bodies are prepared for the moment of death and ‘know’ what to do. Our minds are another thing. I’ll get back to the mind in my next blog post.

Cancer is as natural a process as muscle building. In my case, the likely culprit in triggering my myeloma is an oncology gene, not a factor exterior to my person like an environmental carcinogen, and my immune system was likely complicit in making sure myeloma spread to all of my bone marrow. My bone marrow, it seems, just got tired of producing marrow and started to produce myeloma protein instead, crowding out the cells that produce hemoglobin and other healthy blood cells. I really don’t think that that is a pathological process. Pathology implies that there’s something wrong with the body breaking down and dying. There isn’t. Dying is as natural to us as being born. The problem is that our big brains have a hard time letting go so they unleash our minds in a futile battle against entropy. Ultimately, they deny death itself. We’ll get back to that next post.

I think it’s reasonable to ask the questions I pose above: What would happen if cancer did not exist? How would we die then? What does it mean to die of natural causes? If cancer and other ‘deadly diseases’ didn’t exist we’d die from other causes. Simple as that. So, if medicine eventually ‘cures’ cancer or heart disease, or stroke, it will just have to move on to do battle with whatever other cause is determined to kill us. Scientific medicine is based on a pathology model so is organized to do battle with disease and death. That means that it assumes that there are normal ways to be a human and pathological ways. The idea is to ‘fix’ the pathological ways to bring the human back to ‘normality’. Unfortunately, there is no way to fix death, although there are a variety of ways of conceiving of death (but that’s the subject of my next blog post.). So what would happen if science gave up on the pathology model? It would have to study what is ‘normal’ human development, and not be fixated on correcting what “goes wrong”. It would have to cease thinking of disease and death as evil. Of course, evolutionary models are gaining in importance and they aren’t pathologically based. Furthermore, I’m sensing glimmers of the recognition of the weaknesses in the pathology model in the medical clinic, but pathology is a strong draw and won’t likely go into abeyance anytime soon as a favourite basic framework for the practice of medicine. I figure that until science and medicine face reality, the suffering sometimes caused by attempts to prolong life will have to be closely scrutinized along with the Hippocratic oath, and we won’t be able to deal with death as a natural part of life. So where does that leave me?

I can tell you that I’m not convinced that chemotherapy is the best course of action for me. Yes, it will likely allow me to live longer, but how long? And in the meantime, I get obsessed by my lab results and Carolyn and I reckon time by where I am in my chemo cycle and how that makes me feel. Not sure that’s such a good thing.

15 Access to medical records

It is shocking to read on the CBC News today that LifeLabs has been hacked with an ensuing leak of information on 15 million LifeLabs customers including email addresses, passwords, medical records, et cetera. This is not good news. LifeLabs is a private medical laboratory business that has provided employment for members of my family and which is reputable, and generally reliable. It’s seriously unfortunate that the breach of information has occurred but it’s obvious (if implied) from the news source that it was a case of cyber blackmail, something that can easily happen to any company.

I had LifeLabs online access to my medical records years ago but in the last few years I’ve used VIHA (Island Health) labs exclusively, mostly the lab in Cumberland. Very convenient. Last time we were there (on Monday morning) the tech turned us on to MyHealth which is a new (to us anyway) service to allow patients access to our own medical records including lab and imaging results. This service is equivalent to the service offered by LifeLabs. It’s very comprehensive and I love it. We were able to access online records of our Monday morning Cumberland lab visit by early in the afternoon! Spiffy! So, I have an appointment with my GP tomorrow and I’ll already have looked at all my numbers and will be able to refer to them intelligently with my doctor. Carolyn and I have done a fair bit of research on myeloma, my bone marrow cancer, and understand what the numbers mean to some extent. Because I have only one kidney, the creatinine levels in my blood are of particular interest to us. They measure kidney function, something that can be impaired by myeloma but also by the chemo drugs I’m taking. My numbers show that my kidney is almost functioning normally again! Have a look at the graph below.

For an old researcher like me this is exciting, especially since it’s about my own blood work! Referring to the graph, you’ll see that on January 25th 2017, my creatinine level was 106 umol/L (which means micromoles per litre). That is above the reference range (60-100 mol/L), but not terribly so. Now see what happened in April 2018. There was a slight jump in my creatinine levels, but that was just the start of things going really wonky. By May of 2019 my creatinine levels began to spike up. In late September and during October my creatinine levels were all over the map. I think the radical drop from 134 to 103 umol/L from October 25th to the 29th was very likely because of a prednisone infusion on October 26th. On December 2nd, my creatinine levels were at 137 umol/L and by two days ago on Monday had dropped to 110 umol/L, almost back to normal.

This graph only goes back three years. If it went back further you’d find other times when I had spikes in my creatinine levels, not surprising since I lost my left kidney to cancer in 2002. For instance, in 2008 I went in for a blood test (not shown on the graph) and my creatinine levels were 114 umol/L, (within the reference range which at that time was 70-120 umol/L and not the 60-100 umol/L that it is now. Why the reference range changed, I have no idea). That probably wasn’t a spike, but it shows that my creatinine levels were generally above the reference range or very near it.

What I find really interesting about this graph is that I seem to be able to see immediately the effects of certain treatments on things like creatinine levels. I’m now definitely in a better position to ask the right questions of my medical team.

I’m sure medical professionals may have some doubts about to value of making this kind of information available to patients. I’m sure some patients might just go off the rails if they see lab results in MyHealth that are in red (indicating something abnormal is going on). Overall, I think this is a good move on the part of VIHA but I’d sure like to hear what the pros have to say about it.

In the meantime, if you’re a LifeLabs customer, good luck. There are resources you can access if you feel your medical records may be compromised. Check out the news reports on this. It’s all over the CBC and Facebook.