Katie's BMT Updates

Today is my 37th birthday and many of you have asked me how I planned to celebrate. Well, under the circumstances, we decided to keep it a quiet affair ... Just us Buonos, Granny and Hilary for a quiet night in. Marlene was going to make one of my favorite meals: a special chicken curry served over rice. The best part is that it comes complete with all kinds of fixin's to sprinkle on top: chopped green onions, egg pieces, chutney, raisins, peanuts -- and of course - real bacon pieces. Marlene also made a Persimmon cake for dessert. MMMmmm.

But guess where I am instead? The hospital! Yes, yes, yes ... just when you thought I was past arm's reach of rotten luck, I end up in the emergency room with massive abdominal pain that I can only rate a close secod in severity to giving birth. A constant dull, aching pain, throbbing across my upper GI, just above the belly button, just below the ribs. It's also radiating to my back between my shoulder blades, stabbing pains, like knives. I am doubled-over, eyes wide and fixed on one spot. All I can think about is making it stop. Finally, after what seems like ages, someone comes with a couple of shots of Fentanyl. It takes the edge off, but less than an hour later the pain is back in full force. It's Diloted that finally does the trick. Ahh ... I can breathe again, stop gripping the side of the bed and maybe stretch out my legs.

Crisis abated, my thoughts turn to cause. I am thinking that I have massive GVHD of the gastro-intestinal tract. I am thinking that it must be a recurrence of my tummy troubles from a couple months back. But a CAT scan reveals an inflamed gall bladder and something the doctor calls "gall bladder sludge" (ewww ... gross!) or maybe even gall stones. "Not related to your bone marrow transplant, I think," the doctor says. Now I start to freak out a little because this is kind of how it happened with my Dad. After his bone marrow transplant, Dad turned yellow one day and doctors found a blockage in the liver of his bile duct that turned out to be Cancer of the Ampulla, a very rare treated-like-pancreatic-cancer disease. He had a Whipple surgery to remove the tumor, but it eventually metastasized and he died. Breathe, breathe. I do not need to draw comparisons, I do not need to draw comparisons, I do not need to draw comparisons ... I start to calm down. OK, this is my gall bladder -- not my bile duct, not my pancreas. And I didn't turn yellow.

The surgeon says I have to have my gall bladder out (thankfully you don't really need it). It could cause nasty infections in normal, healthy people -- but me -- I'm a super risk, all immunosuppressed and all. Further, they want to do it today. In the emergency room, I am visited by another doctor, someone from the leukemia ward and a surgeon. First, I need to get properly admitted, then some kind of special ultrasound and, finally, the surgeons and leukemia doctors have to have a pow-wow to discuss options. At 6:00am in the morning, it really seemed like I'd have my gall bladder gone by noon. But, now It's 7:00pm and I'm still waiting for the results of the leukemia doc/surgeon Pow-wow ... It seems late to me, but the nurses say there's still a chance it could happen tonight (really?). Just in case, I've been "NPO" (nothing by mouth) all day and I'm coming up on 24 hours without food or drink (just ice chips for me, baby). Sucks.

The good news is that I haven't had any pain medication since this morning and I have very little pain. The bad news is that my liver numbers are sky-rocketing -- obviously effected by my bulging gall bladder (the doctor says this is typical, but you all know how I feel about my liver).

Can you believe this? Yes, I still have my mouth hanging open in disbelief, too.

I'll keep you posted as I find out more.

much love,
Katie

Update 10/14/08, 10:00pm: So I'm not going to get my gall bladder out -- not yet anyway. Instead, I get a neat test called an "ERCP," where they stick a tube down your throat and look at things (this is the test my Dad got when he turned yellow... But I will not draw conclusions, I will not try to see patterns where there are none). In my case, they're going to check out my Ampulla, clear my bile duct & gall bladder of sludge and just generally try and find out why my liver numbers are sky-rocketing. I'm not really sure why the surgeons don't want to take my gall bladder at this time ... It might have something to do with the fact that I am also hovering near Neutropenia. Hey, when it's a party, it's a party.

Update 10/15/08 10:00am: Ian here. Looks like they are waiting to see what Katie's liver numbers do over the day. Most are coming down, but not all just yet. Also, they would rather have her neutrophils go up a little before doing the ERCP. Sounds like most of today will just be a wait and see day. Good news is that Katie got to eat some jello and broth. It's amazing what a little food does for the spirits.

Update 10/15/08 Noon: I get a Neutropil shot to boost white cells for ERCP procedure, which will likely happen tomorrow.

Update 10/15/08 1:00pm: Katie here. OK I just ate a popsicle, which started to reproduce the pain I was experiencing Monday night. There is something going on with me and I can't wait to get to the bottom of it. I am a little worried.