This third round of Codox-M is going so much better than the first round when I was laid up in hospital and suffering from the effects of the disease. I’m back at home after a trip in this morning to Dana Farber to get an intrathecal injection of Cytrabine. After the first few intrathecal injections you just get used to them. The new fellow, Dr. Dan Zuckerman, who’s taken over from Dr. Mark Sloan, seems to have the trick of doing them as painlessly as possible. Now I am off for a few days while the chemicals they’ve injected into me do their magic and kill of my white blood cells and any lingering Burkitt’s cells wherever they may be hiding. I have a pharmacy of meds that any hypochondriac would be proud of to keep the effects of the chemo at bay:

• Clotrimazole Troches (pronounced tro-keys) to prevent thrush in the mouth
• Nystatin. An alternative mouth wash often used for babies to prevent thrush. The odd thing about this is that after swishing it for 30 seconds you swallow it.
• Biotene. Regular mouthwash, but one of the few that does not contain alcohol and dry out the mouth.
• Lorazepam. Anti-anxiety and anti-nausea
• Prochlorperazine. (Compazine) Anti-nausea
• Zofran. (Ondansetron) Anti-nausea, specifically for chemotherapy
• Megestrol. (Megace). Used to stimulate appetite.
• Nexium. To control acid reflux
• Oxycodone. To control pain, as needed. I used it more at the beginning of the treatment when I still had dental pain.
• Boudreaux’s Butt Paste. ‘Nuff said.

Have not had the patience to watch much of the Alito hearings, but what I have seen has been very frustrating. It’s as if he’s telling the panel that he doesn’t have an opinion about anything, but if that were true, wouldn’t the conservatives also be upset? His record speaks volumes but he won’t admit it, instead hiding behind a fiction that a judge brings nothing to the table but the facts. I expect he will get nominated, unfortunately.

Glen’s recent guestbook entry was very thought provoking, and represents, I think, where a lot of people come from with respect to religious beliefs. I think the recognition that benefit to society can take precedence over individual benefit is an important one. That’s the importance of community, which I want to point out, yet again, does not have to be religious community. Glen also brings up the point you can’t leave reason behind at the church doorstep.

There’s a perceptive letter lead-off letter in this week’s New Yorker (1/16) weighing in on the Intelligent Design (ID) debate. It points out that ID has more to do with Deism than Christianity. One of my American heroes, Tom Paine, was a Deist, and Thomas Jefferson was also generally reckoned to be one also. Regarding Tom Paine, I remember as a child having the house where he worked for a while as a stay-maker, in Sandwich England, being pointed out to me by my father. Just a couple of years ago I visited the Tom Paine museum in Thetford, Norfolk, England. Paine had a very mixed life, including an unfortunate entanglement with the French Revolution, but his role in fostering support for the American Revolution through the publication of “Common Sense” was significant. The fact that many of the heroes and founding fathers of the early American state were not, in fact, Christians, seems to have been erased from popular American understanding.

Deism allows for a God, known by his works, but a Deist’s God does not take sides. Here’s a quote from one of Paine’s later books, the “Age of Reason” that I’ve found inspiring:

“I do not believe in the creed professed by the Jewish church, by the Roman church, by the Greek church, by the Turkish church, by the Protestant church, nor by any church that I know of. My own mind is my own church. All national institutions of churches—whether Jewish, Christian, or Turkish—appear to me no other than human inventions set up to terrify and enslave mankind and monopolize power and profit. I do not mean by this declaration to condemn those who believe otherwise. They have the same right to their belief as I have to mine. But it is necessary to the happiness of man that he be mentally faithful to himself. Infidelity does not consist in believing or in disbelieving; it consists in professing to believe what he does not believe.”

[later]

Martin, my brother, is staying with us from Spain for a few days. It’s great to be able to renew family ties. He’s also able to give Mo a break from ferrying me back and forth to the hospital. Miranda rates his skills as an English Language Arts homework help above mine – well, he is a translator, so he spends a lot more time thinking about language than I do. I’m happy to say that I still have the edge as a Math (Maths as it’s called in England) homework helper – Martin says he has no problem conceding that to me.

Tomorrow should be a short day – I just have to have an intrathecal injection, rest up for half-an-hour, drink a cup of coffee, and come back home. Still feeling pretty good.

The blog finds me hanging out in the infusion ward at Dana Farber at about 3:30 pm. So far I’ve had my blood draw, some pre-meds, and am almost through my big bag of Rituxan. I’m now being infused at the maximum rate of 400 ml/hr. I’ve had no adverse side-effects to this drug which I know is not the case with everyone. Still to come: my spinal tap and intrathecal injections, plus CHOP (actually, I’m not getting the Prednisone, but I’m getting the other stuff). Chris, my nurse, is estimating that I’ll be out of here by 5:30, but that’s assuming that my IT, which has to be delivered by Dr. Jacobsen or Dr. Zuckerman takes place with no delay. (I actually got out at 6:15)

I’m happy to be starting in on the last two rounds of chemo. I’ll know better about how the lymphoma is responding after they analyze my spinal fluid, but I’ve been doing well up until now. I am more fortunate than many people, in that I have a very supportive family and circle of friends and neighbors. I especially want to say thanks to all those neighbors who have been bringing in cooked meals to Bradley Lane. With Mo’s schedule being dictated by my appointments at the hospital, having home-cooked meals on hand has been a great boon!

Touch wood, I have had no complications with my disease so far. Some of my room mates have had multiple problems and their quality of life has suffered as a result. I am not sure how well I would do if I also had heart disease or brain damage, or any other of a host of possible complications.

Driving in this morning, and looking at the grim hard frozen snow-covered landscape, it seems difficult to believe that Spring will ever come. There’s certainly a few good weeks of Winter left in New England. But Winter *will* give way to Spring, and my chemotherapy will also come to an end and give way to recuperation. In both cases there is nothing I can do but wait it out and get on with life

This my last day off before chemo starts again tomorrow. It’s snowing here in Stow and the world outside looks pretty uninviting. The ground is frozen and the sky is overcast. (California’s sounding pretty good, John!). Nevertheless, Mo is out walking Diggory in the town forest, along with Maisie (Liz’s Wheaten), and Riley (Annette’s Yellow Lab). Yesterday she walked with Iona (Martha and James’s Airedale Terrier). She can’t walk with both Maisie and Iona because they don’t get along! I remember the last walk I took with Diggory, back in early November. Miranda came with me that time, and we did the white trail – the short loop. I’m looking forward to doing some more walks with Diggory after the chemo is over and I start to get my strength back. Last year I did a lot of snow-shoeing in the town forest after the snow falls, and then later, would take out my cross-country skis and inexpertly navigate the trails. Often, Miranda would join me using Mo’s skis, and she got her first taste of the fun of sliding down the gentle slopes. This last Friday, Miranda got her first proper downhill skiing lesson at Nashoba. She’s in the beginner’s class so did not actually do much skiing; she just practiced different positions of the skis. Still – if you’re going to live in New England, one might as well learn how to enjoy the winter.

Miranda went to the annual girl-scouts father/daughter square dance last night, with her friend Jillian, and her Mom, Mary. (Jillian’s father, John, is in California for his new job.) Miranda slept over at Jillian’s house last night, so I have yet to hear how it went. Uncle Martin is lucky that he’s not showing up until tomorrow, otherwise I think he’d have been roped in! The square dance has been a fun Stow social event over the years, but not without event. A couple of years ago there was a point where we all formed a big circle, holding hands father-daughter-father-daughter; the caller handed down the microphone to one of the fathers; unfortunately the microphone was not properly grounded, and an electric shock traveled through the circle, each person in the circle getting shocked and twitching a fraction of a second before the next person. Amusing, but not to be repeated.

The opening salvo for what could become an insurance battle has begun. Not sure how much of a problem it’s going to be yet, but I sent off my first letter to Aetna yesterday contesting their decision not to honor a claim for reimbursement of oral surgery on the grounds that I needed pre-authorization from my Primary Care Physician. I think this one’s going to be OK, but I must say I am not looking forward to having to sort out future bills and denials of service. Taxes are going to be more interesting this year – and even more so next year!

Enjoying the unfolding Abramoff scandal tremendously, and hoping for lots of indictments. On a related note, I see that Scooter Libby has landed a plum job as member of a Washington think-tank, the Hudson Institute so he’s back on the inside track again.

Spent a quiet day at home. My weight is slowly increasing, 163.8 pounds as of this morning (11 stone 9 pounds 13 oz, 74.5 kg. Pick your units). This is thanks to the calorie packing meals that I’m able to get at home, well cooked, and served up when I need them. Food service is one of the things that it’s hard for hospitals to get right. I wrote earlier about my dismay when I finally got an appetite in hospital and they cancelled my muffin because they were out of them. Another problem is hospital is the mere fact that food is served only three times a day. Typically breakfast would not show up until 9 am, at which time I would have been awake for two hours, craving a good cup of coffee and a pastry. If you’re in for a length of time, you can do a certain amount of food hoarding, but one can only drink so much Boost. Boiled eggs at the hospital, in particular, were diabolical — rubbery and green. A good book on nutrition for cancer patients is published by the NIH, “Eating Hints for Cancer Patients” For me, the most important thing is to eat food that I enjoy, and where possible enrich with extra calories, but don’t overdo it or else the food doesn’t taste right. It also helps if you can prepare the food yourself, because, as all cooks know, preparing food gives you an appetite. I do miss the short slurp of wine or dry sherry when I’m cooking though – no alcohol for me until this is all over.

Loosing weight has also affected my muscle tone. A few days ago my muscles were really stiff and painful. I walk around the house every now, as well as up and down the stairs, which gives some very mild but useful exercise. I have been thinking about using the treadmill in the basement, but I don’t think I’m ready for that yet. I have some 3 lb weights however that I may be able to use. Muscle tone drops of very quickly when you’re laid up. A few days ago I was weak because I was anemic, but I don’t think that’s the case anymore. Frequent light exercise seems to be the thing.