Category Archives: Blog

January 4, 2006

WBC (White Blood Cell) is 10.41 – slightly above the normal range. Platelets are 216 (normal range 150 – 450). I continue to feel good. The latest news about by blood infection is that the bacteria are kind of wimpy, and the likelihood of needing to remove my port-a-cath is low. The next round of chemo, CODOX-M, the less brutal of the two regimens is due to begin on Monday as outpatient. On day 1, this regimen consists of the following:

  • Rituximab. 375 mg per square meter. This is the expensive stuff that is grown from mouse cells. The measure 375 mg per square meter is how the dosage is calculated; from my skin area, or Body Surface Area (BSA). My skin area is calculated in turn using a formula that considers my weight and height. The following website has a calculator for BSA: Body Surface Area Calculator So, using the default formula (Mosteller) and plugging in my weight (72.5 kg) and height (5’ 11”) I get a BSA of 1.91 sq m. This yields a dosage of 716.25 mg by my calculations. (Of course, I’m not a doctor. I don’t even play one on TV.)
  • Cyclophosphamide. 800 mg/sq m.
  • Vincristine. 1.4 mg/sq m.
  • Doxorubicin. 50 mg/sq m.
  • IT Cytarabine. 50 mg. The IT means that it is injected into the spinal cord. (IT = intrathecal)
  • IT Methotrexate. 12 mg.

That’s it for day 1. I have a 3-ring binder that tells me what each of these things does, what the short term side effects are, and what the long-term side effects are. Having already gone through one round of CODOX-M and not having suffered any major side effects gives me more confidence that I can do round two, but I still need to remain vigilant.

There was a possibility that I could have been discharged today, but my intern stopped by just after noon to let me know that they were still awaiting results of the blood cultures. As I understand it, however, I will be discharged tomorrow, and the only question is whether I get discharged needing an infusion service for the antibiotics, or without needing antibiotics.

January 3, 2006

[morning]

WBC (White Blood Cell) is 9.58 – back in the normal range, but will, of course, overshoot tomorrow. Platelets are 81 (normal range 150 – 450). I feel good and took a few spins around the ward this morning after breakfast. As I noted yesterday, my blood has tested positive for a bacterial infection. They have not positively identified what bacteria it is, but the antibiotics that I’m taking should keep it at bay. There is a good possibility that they will have to remove the port-a-cath – I’m hoping not since it is such a convenience and lets me avoid getting stuck so much.

The weather in Stow is pretty bad, so Mo will not be visiting today. On the positive side, Miranda gets a snow-day. She went to see the “Chronicles of Narnia” yesterday with her friend Hadley and really enjoyed the movie. It’s on my must see list when I get out of here. I remember enjoying the books tremendously as a child. If there were any obvious Christian overtones to the stories, I don’t think I noticed them. When all is said and done, the symbolism of self-sacrifice and rebirth is actually not uniquely Christian anyway. I am sure that C.S. Lewis was writing from the heart, and if that happened to be a Christian heart, then so be it.

This touches on an area that I would dearly love to see changed in US.

Education

I would dearly love to see public schools permitted to teach religious studies as a legitimate subject. It’s clearly important in understanding society, and faith is part of people’s make-up. Outlawing faith from public education is self-defeating. What has happened by banning it from public education is that religion in schools has become a rallying point for the religious right, much like the well-intentioned but ill-executed Roe v. Wade decision. The left asks too much sometimes – would it not have been better, for example, if Ralph Nader had not run in 2000. I wonder what a Gore presidency would have been like. We have nothing to fear from the teaching of religion in schools, so long as it is taught in the spirit of true inquiry. As I have written earlier, it is only when religion becomes a wall and stifles dialog that anyone has to worry; and when I say anyone, I include members of other faiths, as well as atheists.

[1/2/06 later]

My appetite is pretty much back to where it needs to be. My weight is back up to 172 lbs, just three pounds short of what it was when Mo and I got married, though still 25 lbs shy of what it was before all this began. I ate some of Mo’s lunch this morning; half a tuna salad sandwich and some chips, and I still had room for half of a toasted cheese sandwich later. The food here really is not that good, but I am at least eating again. One of the things that seems to be happening to me, as an invalid, is that I crave the types of food that I ate as a child. Thus, for breakfast, oatmeal (or porridge as we would call it in England), and for supper I like to eat what we used to call “Tea.” This consists of buttered bread and jam, and perhaps some cheese and cake, washed down with one or two cups of tea (with milk). Now the problem here is that mainstream America has no idea of jam – in the US it comes in two varieties: Strawberry, and Grape Jelly. Of course you can get apricot, plum, blackberry, and all the other varieties of jam in the supermarket, but not at the hospital. For breakfast, most US hotels have discovered marmalade – but not this hospital.

Walked around the ward on three separate occasions today. On one occasion I was disconnected from my IV pole so could take the elevator down to the 5th floor. There’s an out-of-the-way area there where I can practice my dimly remembered Tai Chi. Feels good to stretch. I wish I’d kept up with the Tai Chi – it’s probably something I’m going to want to do when the chemo is over and I’m convalescing. On the other two occasions I was hooked up to my buddy the IV pole so could not do much more than loops around the corridors. There are only so many loops you can do! Even a little exercise does me good though.

Boredom is always lying in wait for me, just a few minutes away, waiting to drag me down into self pity. So far I’ve managed to keep it at bay, but for how much longer? Seeing Mo every day cheers me up, but even there we need to focus our attention so that we’re not just chit-chatting. Today we picked a taxi-service to pick up Martin (my brother) from the airport when he arrives from Spain next week. I’m looking forward to his visit tremendously. Later, I watched Cinderella Man on my laptop, with the sound piped in through my headphones. Not my typical pick of a movie – boxing is not really my thing – but I liked Russell Crowe’s part. Will probably read a couple of chapters of POB’s “Treason’s Harbour” tonight; this is another of my favorites since part of it is set in Malta, where I spent a very pleasant month on leave back in the mid seventies, when I was working for SSL (Seismograph Service Limited) looking for oil off the coast of Libya.

Did not sleep at all well last night, despite taking a sleeping pill. I did, however, have a delicious nap after watching Cinderella Man. I took a stroll around the ward, downed a can of Pepsi, and fell fast asleep. Woke up about 45 minutes later to discover that my supper had been delivered without my knowing it. One of the problems with sleeping for extended periods is that it jeopardizes my need for taking frequent potty breaks, as a result of the liquids being pumped directly into me. Will skip the sleeping pill tonight.

Thanks to my family and friends for visiting this blog. Reading your guestbook entries helps my with the will to see this thing through, and I look forward to reading your new entries every day. Please also leave me links in the guestbook for things that you’ve found while trawling the net that you think I might be interested in, or that illuminate entries in the journal. Remember, however, that I’m on dial-up, so no big files!

January 2, 2006

The doctors stopped by very late this morning, about 9:30 am. I guess they wanted to keep me in suspense. The good news is that the CT scan did not reveal any abscessing, so I won’t be needed any amputations just yet. The good news was tempered by the bad news that one of my blood cultures had tested positive for an infection; later another one tested positive too. What this means is that they have to keep me on a wide range of antibiotics for a while. Most likely, the infection is in one of the ports of my port-a-cath, that ingenious device that was implanted in my chest earlier, from which my twice-daily blood draws are taken, and through which I receive my daily infusions.

As I understand it, the port-a-cath serves as an expanded vein providing a reservoir of blood just below the skin. There are two external access ports to the port-a-cath that each consist of a needle that accesses the reservoir internally, and externally has a little box thingamajig about three centimeters long and 0.5 centimeters wide, resting on a pad of gauze, and standing out from the chest. The box thingamajig is connected to a length of plastic tubing about ten inches long and terminates in a blue plastic screw connector. There is a clamp on this tube allowing flow to be shut off. This connector is connected and disconnected several times daily. To draw blood, for example, you (the nurse) must disconnect the tube from the IV and draw off some blood (10 cc). This blood goes to waste because it is mixed with whatever you were just being infused with. Then the nurse gets the needed blood sample by connecting the tube to a color coded vial containing a vacuum. The blood is drawn into the vial by the vacuum. The vial is disconnected and the nurse injects saline into the line. Each time the tube is disconnected you have to wipe the connecter with an alcohol wipe. If the tube is to be disconnected for any length of time—for example when I am disconnected from the IV to take a shower— the tubes have to be flushed with Heparin, a substance that prevents clotting.

My blood cultures are being re-checked. As well as drawing blood from both ports, they also sent a phlebotomist who drew blood directly from the vein. It takes about a day to run the cultures, so I hope to get more info tomorrow. How this impacts the beginning of my next round of chemo is not yet clear. Dr. Jacobson is out of town and the residents have been emailing him. My guess is that Dr. J. will want to start the CODOX-M round as soon as possible. Whether this changes the math about whether CODOX-M is done in-patient or out-patient is also unclear. The antibiotics that I’m on have to be delivered IV and there is the possibility that this too can be done at home. I think Mo is none too thrilled about the prospect of having to manage IV at home! Hopefully the doctors will be able to agree on the plan tomorrow and let Mo and I know what’s going on. The uncertainty grates.

January 1, 2006

Read the Penn Jillette article that Charles Jowett posted a link to earlier. He makes the point that there is a step beyond mere atheism, where you go beyond not believing in God, to a state where you actively believe that there is no God. Now I would call the first mere agnosticism, but no matter. For me, to be an atheist means that I believe there is no God influencing the events of the world, there was no creator, and there is no afterlife.

Penn puts is this way:

“..Everything in the world is plenty for me. It seems just rude to beg the invisible for more. Just the love of my family that raised me and the family I’m raising now is enough that I don’t need heaven. I won the huge genetic lottery and I get joy every day.”

Becoming an atheist is liberating: I offer the following passage from POB’s [Patrick O’Brian] “Ionian Mission,” describing the Bach Partita in D Minor. The pure simple English expressing powerful ideas is one of the reasons why I love POB’s writing so much.

“It was as though he were fox-hunting, mounted on a powerful, spirited horse, and as though on leaping a bank, perfectly in hand, the animal changed foot. And with the change of foot came a change in its being so that it was no longer a horse he was sitting on but a great rough beast, far more powerful, that was swarming along at great speed over an unknown countryside in pursuit of a quarry – what quarry he could not tell, but it was no longer the simple fox.”