No Evidence of Disease!!

Can you freaking believe it??? My PET of yesterday came back completely clean!! No evidence whatsoever of disease!!! Amazing. So now they're talking about whether or not to give me radiation before the transplant. At this point, I'd probably be more comfortable with a bit of it at least, since I still have this 2.3 x 2.9 cm thingamajig around/below my clavicle. I dunno. I'll leave that to the experts, and listen carefully to the pro's and con's as they state them. I'm just so, so happy I've been fortunate enought to have gotten to remission prior to the transplant....what a gift.

The last two days have been so HECTIC!! Tuesday was a 10- hour day (not including the commute) which included blood and urine tests, a pulmonary function test, a bone marrow biopsy (they just do a single one in the case of an HD relapse, interestingly), a check-up with the nurse practioner, a meeting with my transplant coordinator nurse, and a psych/social worker eval for Lorraine and me (in this one I didn't like the question, "And what if this doesn't work?" Not fond of that one at all. I just replied, "I don't know." Then I cried. Bleh.)

Yesterday was a 9-hour day which included a PET/CT, a hemapheresis orientation in which Lorraine and I got to see the apheresis machine and ward and hear about the process, an EKG, and an echocardiogram with contrast.

These two days just totally took it out of me. Just so, so draining....I don't have the stamina that I used to yet, apparently. Also it's official: my veins are SHOT. They have so much trouble finding usable veins, it ends up being very painful.

Speaking of veins and accessing, I'm going to get a temporary catheter in my neck (yes, neck!) just for collection, and they'll remove it immediately right in the apheresis ward as soon as it's official that they've collected enough. Because I'm participating in this AMD3100 study, I'll get the temporary cath put in the day before collection, stay in a hotel near Emory that night (the pharmaceutical company paying for the study will pick up the tab) where a visiting nurse will come at 10:00 p.m. and give me my AMD3100 shot (I will have given myself Neupogen twice a day for 4 days prior,) and then I'll go in to the apheresis ward at 7:30 a.m. for collection for several hours. I'll get out at around 1:30 and find out that evening how many they've collected. I'll do this for up to 4 days, until they've collected 5 million cells. However, if they can't collect the full 5 mill, we'll still proceed with the transplant -- I'll just live with a low platelet count for the first year or so.

Getting back to the port, they're just going to put in a double-lumen PICC line for the transplant itself; that, with my port, will give them the 3 lines they need. Yay!

On Tuesday my transplant coordinator nurse, Jeanie, said that I'd go to collection on September 8th, but today she said that it might be a little sooner. Because of this study, they can't collect until a month after my last chemo treatment, which was 8/2.

I have an appointment with my primary oncologist next Thursday (turns out it's still the director of the transplant center, but the other oncologist with whom I've been communicating was the one who oversaw my care when I was hospitalized, and he wanted to continue to monitor me and keep in touch -- how nice is that??) Jeanie said that if she can update me sooner, she will. I like her a lot.

So that's my good news!! (And the full update, lengthy as it is.)

Oh, and I'm now officially a baldie. Lorraine INSISTS that she finds it very sexy and that I actually look hotter bald because it shows off my features. Hm.... I know she's a keeper, because I actually feel like a big egghead.....with earrings and extra eye-makeup.

No evidence of disease. NONE!