I read Robbie Russel’s blog at http://www.kickcancer.blogspot.com/¹ on his experiences licking cancer. The link to this blog is at www.burkitts.org². Robbie, if you’re reading this blog, thanks for detailing your experiences! It seems that for all the good intents of the Institute of Medicine³ in attempting to reduce error and improve quality of service that there are still far too many snafus in the delivery of service. I deem myself fortunate in having had decent care at DFBWCC, but I can also relate to some of the experiences you went through. For example, on the night of my first big 3,000 mg. methotrexate infusion, I was not informed how long it was going to take. A nurse did the first pH test, and I was still way acid (4.2 or something) so I figured it was going to take a while. Then an hour later, a PCA (Patient Care Assistant) came in and did the pH test and told me it was 7.2. I said I thought that was unlikely and called the nurse. Turned out the PCA didn’t know how to do the pH test (surely not that hard!) and had misread the scale. From then on, the tests seemed to come at random times. They were pumping me so hard with Sodium Bicarb that I started to pee fizzy. The concept of reading the pH at regular intervals and drawing up a trend line did not seem to occur to them.

At other times, the PCA would come around and take my temperature and vital signs. I never did figure out when they were supposed to do this. I’ve been in three different wards so far at B&W and it seems to be different in each ward. Sometimes the readings would appear to be anomalous, but the concept of having a back-up thermometer did not seem to occur to anyone. At one point I asked the nurse how often they calibrated the thermometers and just got back a blank stare.

Of course, it’s not always the hospital that can screw up. Last night I was supposed to get a home neuprogen shot and clear forget. I took it early in the morning instead. Heck – it’s just an overpriced vitamin. Then the classic mistake this afternoon… In yesterday’s log I wrote how I had taken to drinking Caliber as something palatable that I can drink to keep my liquids up. Halfway through lunch I discovered I had drunk half of my brother’s beer (Dogfish Head Pale Ale – highly recommended for non-chemo patients!) So far no side effects except for a nice siesta! I am starting to feel the effects of the chemo from a few days ago, but so far nothing major and am keeping the nausea in check with my three buddies: Lorazepam, Prochlorperazine, and Zofran.

1. This site is no longer active ↩︎
2. This site is no longer active ↩︎
3. The Institute of Medicine has since been renamed to the National Academy of Medicine ↩︎

Spent the day pottering around the house doing some cooking. Still with the goal of increasing my weight and getting some light exercise. Cooking (and washing-up) is good light exercise, and helps keep me busy. Since my brother Martin is here we ate British.

• Breakfast: Wheatbix, two 6 minute boiled eggs, white toast, wheat toast, butter, marmite, marmalade, coffee
• Elevenses: Banana Smoothie, Tea.
• Lunch: Macaroni Cheese. Not the Kraft crap that comes from a box, but built from scratch, loosely following Delia Smith’s recipe, which include mushrooms, onions, bacon, and tomatoes. Miranda liked this as well!
• Mid afternoon Tea: Tea and cookies
• Supper: Toad in the hole (sausages cooked in a Yorkshire pudding batter), mashed potatoes, shredded red cabbage fried with onions, bacon, and garlic.
• Dessert: Ice cream and chocolate/ginger cake

The trick when making mashed potatoes and cabbage is to have enough leftovers so that you can make another British treat: Bubble and Squeak, which is the potatoes and cabbage mixed up, fried in bacon drippings, and served with a fried egg. You eat this for breakfast.

Remember when using British recipes that a pint has 20 ounces, not 16!

I’m going to regret having to go back to eating normal after my chemo is over!

The other thing I have to do is keep my liquids up. I’ve included Tonic water with a slice of lime in my regimen (no Gin) as well as non-alcoholic beer. That way I can fool my body into thinking that I’m really having a drink.

[later] Began reading the book “To Err is Human,” the landmark book on medical error.

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