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December 2000 Updates Monday, December 4, 2000 Note: The following 4 updates weren't added to this page until Saturday, December 9, 2000.
Tuesday, December 5, 2000 Wednesday, December 6, 2000 Thursday, December 7, 2000 Friday, December 8, 2000 This morning Bruce had unlabeled Anti-B1, and this afternoon he got the therapeutic dose of Bexxar. I was able to watch (from a safe distance), while he got it. The Bexxar was in a large syringe and the syringe was inside a lead box, which was on a table. Through a hole in the lead box, the syringe was hooked up to Bruce's IV line. Throughout the infusion a technician had a meter, with which he kept scanning the box, the IV line, and Bruce. In the beginning, the box was the only thing that was radioactive. By the end of the infusion, only Bruce made the needle swing wildly.
The dose of Bexxar that one gets, is individualized. By comparing the three scans Bruce had during the past week, the nuclear radiation guys (who were friendly, funny and informative!) were able to determine how quickly Bruce's body gets rid of the radioactivity. With that information, they were then able to figure out the exact dose of Bexxar that Bruce should get. Bruce's body got rid of the radioactivity from the tracer dose, slightly faster than the average person would. Therefore, he got a slightly higher dose of Bexxar, than the average person would get.
After the infusion was finished, the nuclear radiation guys figured out how long Bruce would have to practice the various safety precautions. These too, are individualized. After being given the safety directions we'd have to practice (these precautions are for the safety of "other" people, not for Bruce's safety), we were escorted out of the hospital.
When we left the hospital, it was during rush hour traffic and it was snowing out. Although the accumulation of snow wasn't much, it was enough to make the roads slippery and to slow down the heavy traffic. This combination made for a longer trip home, than we had planned. My exposure time to Bruce was supposed to be less than 4 hours, but it ended up being 4 1/2 hours. We are now safely home though, and Bruce is in "at home" isolation.
Bruce had no reaction to the Bexxar, while he was getting the infusion. Nor has he had any side-effects, since he got it. The worst side-effect from Bexxar is usually a lowering of the blood counts. Starting in two weeks, Bruce will be having weekly blood tests done. With Bexxar, the nadir (low point) of the blood counts is usually around 6 weeks after having the treatment. Around mid-January will be the most dangerous time for Bruce, as far as his blood counts go.
A response to Bexxar can happen within the first week after receiving it, but for some people, it can take up to 2 months before a response is seen. When a response does finally happen, it usually happens suddenly and quickly. Bruce and I are now waiting, watching, hoping, and praying, that he'll have a drastic response soon!
Sunday, December 10, 2000 Late evening, Sunday, December 10, 2000 Wednesday, December 13, 2000 So far, there's been no noticeable response. Bruce has many enlarged lymph nodes in his neck, including some very large ones, and they're still the same size that they were on Friday. However, they have not grown at all, and we know it can sometimes take awhile before a response is seen.
Some people have asked me what the "at home isolation" involves, so here's more about that...
Since I spent so much time exposed to Bruce during the car ride home from Boston, I'm the most at risk for excessive radiation exposure. The goal is to keep my radiation exposure down to less than the amount of radiation an average person would receive in 500 days of normal living. I used up a considerable amount of that exposure time during our car ride home, so now I especially have to take precautions to avoid any unnecessary exposure. However, Bruce is a threat to other people as well, with the greatest threat being to pregnant women, babies, and small children.
For one week:
For two weeks:
For two months:
The way we're handling these precautions are....
Since our master bedroom has a master bathroom off of it, I've moved out of the bedroom and Bruce is spending almost all of his time in there. Before we went to Boston, I moved out my clothes and personal things, so there's no need for me to enter our bedroom. To help keep him occupied, Bruce has a TV, VCR, and telephone in there, as well as a lot of books to read.
To communicate with each other, Bruce stands just inside the bedroom door, I stand at the opposite end of our long hallway, and we shout back and forth. He also called me on our computer phone one day. We never use this line for phone calls, so it surprised me when it rang - I thought it must be a wrong number. When I answered it though, Bruce was on the other end saying, "I'm lonely and I miss you!".
Mealtimes (or when Bruce wants a drink), is one of the biggest inconveniences. He puts his dish and/or glass outside the bedroom door, and then he shouts, "OK", when he's a safe distance away from the door. I then go down the hall and put the food or beverage in his dish or glass, being careful not to touch the dish/glass. I shout, "OK", once I'm a safe distance away, and then he retrieves his food or drink. In the beginning, I was making a lot of trips down the hallway at mealtimes. First with the meat, then with the potatoes, then with the vegetables, etc.. Finally, it occurred to me that I didn't need to make all those trips with the serving dishes! Now, I put his food all on one plate, and then transfer it to his plate in just one trip. Also in the beginning, he used to put his plate on the floor. While I was stooped over putting food on it, I kept feeling like I was feeding a dog! (This was before I had figured out that I didn't need to be making a zillion trips with his food, so the frequent bending over was also getting to my back). Now, he has a TV tray that he puts outside the door, with his plate and glass on it. After I've served his food, he takes the TV tray back into the bedroom and uses it as a table to eat off of. He washes his dishes in the master bathroom, and stores them in the bedroom.
When Bruce does come out of the bedroom (so he can go into the cellar or outside), he makes a hilarious beeping sound to warn us, so we'll know to stand back. He's careful not to touch anything along the way, and he wears gloves when he's going to touch the cellar door handle. Although gloves don't block radiation, they do prevent his radioactive perspiration from being left on what he touches, so the door handle doesn't become a source of radiation.
Not being able to hug each other is the hardest part! Bruce stands in the bedroom doorway, while I stand at the opposite end of the hall, and we embrace ourselves while saying, "I'm hugging you!". It's not quite the same as the real thing though! And, not being able to hug him is especially hard when he's feeling too ill to even get off of the bed. That's when he needs a hug the most, and when I want to give him one the most. However, we keep trying to remind ourselves that a brief time of not being able to hug each other, is better than never being able to hug each other again!
*I'm* not finding Bruce having to clean the toilet daily, nor him having to do his own dishes, difficult at all. In fact, I'm trying to convince him that they said he has to do those things for 3 months! *grin*
Friday, December 15, 2000 Saturday, December 16, 2000 Sunday, December 17, 2000 Monday, December 18, 2000 Last night, Bruce woke up only once with night-sweats and it was a fairly mild episode. The rash on his upper back is mostly just tiny scabs now and, other than an occasional red spot here and there, it's pretty much gone from his lower back, chest and forearms. His neck is no longer red - it's back to it's natural color. He still has some tightness in his chest, like one would have with a chest cold.
The lymph nodes in Bruce's neck, that presented while we were in Boston, remain unchanged. However, the largest lymph node in his neck (that he's had since the beginning), feels softer and smaller today! And, some of the small nodes he had before, are gone completely! The Bexxar is working!!!
Monday afternoon, December 18, 2000 Tuesday, December 19, 2000 Friday, December 22, 2000 Our concern for the immediate future, will be Bruce's blood counts. Bruce currently has a pretty bad head cold, so he has to concentrate on getting rid of that before his counts go too low. His blood counts aren't expected to hit bottom though, for about 4 more weeks - hopefully, he'll be well over the cold by then!
Although I'll continue posting once or twice a week, Bruce and I would like to take this opportunity to thank everyone who has visited this page, signed the guest book, offered us words of support and encouragement, and/or who said prayers on Bruce's behalf. We hope and pray that you all have a beautiful Christmas, and that YOUR miracle is just around the corner!
Tuesday, December 26, 2000 Wednesday, December 27, 2000 About 8 years ago, I lost the diamond out of my engagement ring, while hand-digging a new flower garden. Bruce and I looked for the diamond for hours, but to no avail. I haven't worn my engagement ring since then.
This year, after he came out of isolation, Bruce pulled a ring-case out of his pocket and handed it to me. The box contained my original engagement ring setting, but with a new diamond set in it. As I opened the box, Bruce asked me if I'd stay married to him for another 30 years. I said, "Yes!". :-)
Thursday, December 28, 2000 Friday, December 29, 2000 On to: January 2001 Updates Bruce's Non-Hodgkin's Lymphoma Story ~ Main Page Background courtesy of :
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