Well, the day dawned bright with lots of sunshine. Unfortunately the temperature isn't scheduled to be above freezing for at least the next week.
We've settled into our little apartment. It certainly isn't home, but we'll make do. Both of us wish for a true sofa in the tiny living room. We only have a small twin sized Hide-A-Bed loveseat. Jackie put a $39 KMart sofa cover on it to make it look more presentable. A few throw pillows added will make it more comfortable.
Jackie is feeling MUCH better today. She seems to be getting over her cold. Yesterday was really hard. By the end of the day I was pushing her around in a wheel chair. Today she is almost back to normal.
Today brought another battery of tests. Today she has a consultation with the radiation specialist, an echocardiogram, and electrocardiogram, a thorough eye exam (with eyes dilated), a radiation measurement (to synch the machine to her body size/shape), plus a couple of tests I can't remember as I type this.
It is amazing how efficient the Mayo can be. They are able to cram a full week's worth of tests into a single day. You move from building to building with hardly a hiccup. When you arrive they already know you are coming in, the doctor has reviewed your charts, the nurses have prepared their parts, and you are in and out of the appointment in record time. RARELY is there any sort of delay! For those accustomed to waiting in a doctor's office for an hour or more just to be treated rudely by the nurses and hurriedly by the doctors this place is a real eye-opener!
We learned this morning they seem to have her scheduled for a "reduced intensity mini-transplant". This means she will receive 1/6th of the normal radiation dosage and probably a much reduced level of chemotherapy for the transplant. Instead of treating her two times per day for 3 or 4 days with radiation she will only have a single treatment. It will still reduce her immune system to a dangerous level, but the side effects (cataracts, lung problems, secondary cancers, etc.) are greatly minimized. This is very good news.
This COULD change and is dependent upon her bone marrow results. But as it now stands this is the type of transplant we can expect. It is cutting-edge and can only be done on patients in good general health. It uses the donor stem cells to do the "heavy lifting" in killing off the errant CLL cells. In the past, they waited to perform the stem cell transplant on patients as a last resort. At that stage most patients had become "refractory", or immune to most chemo treatments. In other words they were on their last leg. To add insult to injury they gave them full myloablative (massive) radiation and chemo treatments to kill off their immune systems. They then infused donor stem cells in hopes of transplanting a new immune sytem. In many cases the patient was too far gone and too sick to recover from the massive chemo and radiation. The Mayo (and most leading transplant centers) now try to treat the patient with a stem cell transplant as a front-line defense. If they can get the disease into a very good remission status (and Jackie is, indeed, in good remission status) they can then perform the "mini" transplant. The donor stem cells (rather than the massive radiation) go about finding and killing off the offensive CLL cells that can hide in various parts of the body. This is called the graft-versus-leukemia effect.
Well, enough medical stuff for now. We have the weekend off and don't resume appointments until next Tuesday.
Bruce & Jackie from Rochester