Back to updating the blog after a couple of days off. I have been having technical difficulties with the lighter laptop on loan from CSC; it won’t connect to my wireless network at home or to Netzero via dial-up. So I’m sitting here balancing a lead brick of an older laptop on my thighs, sitting up in my hospital bed. The infusions started yesterday with the Rituxan. This is a drug that is not part of the standard Magrath regimen but has been added in the stage 2 clinical trial that I’m on. I’ve been reading more about how this drug works in the book “The Patient From Hell” – required reading for cancer patients undergoing chemo and radiation therapy.

It’s an odd feeling coming to the end of the regimen. From here on out life will not be regimented and it’ll be a different type of battle. Since Burkitt’s is an aggressive type of cancer, we’ll probably know within the year whether the chemo knocked out all the Burkitt’s cells, or whether any managed to linger in some obscure lymph node somewhere. I assume that we’ll also be checking to see if there are any thus far undiscovered side effects from the chemo. The neuropathy in my feet continues to be a problem and I don’t know if it’ll affect my ability to drive. I think you never really get over cancer, but life will slowly get back to normal – I’m looking forward to growing hair again!

For this last cycle I get chemo every day for five days, so my last chemo should be on Friday evening. Then they’ll monitor me and discharge me as soon as they can. Now it’s not that I enjoy being in hospital, or that I enjoy the prospect of being in a place where there are a lot of sick people and germs, but the thought of being discharged a few days before my nadir – the period 7-10 days after the beginning of chemo when I’m feeling at my shittiest – that does bother me a bit. It seems however that that’s the general trend these days, to discharge people early. Last time when they discharged me after the IVAC round I had to dash back a couple of days later, severely dehydrated. I talked with one of my doctors about it this morning, but he thinks the conditions will be different this time. I hope so. It’s often said that the reason that hospitals are so keen to discharge people early is because that’s what the insurance companies will bear. This may or may not be so, it certainly sounds plausible. There seems to be unevenness in the degrees of safety that a hospital will bear for different stages of the overall case and different processes. Right now I’m receiving the second of two units of blood, and it’s a comforting feeling to know that my blood chemistry is monitored daily. That’s not a comfort I have at home. In the absence of public reporting for patients whose bills are paid for by insurance companies (i.e., non Medicare/Medicaid) do we really know how much the market is impacting medical system safety?