October 22, 2009

Lumpy and Frumpy

Ive been meaning to update, but just haven't found the time or energy. Last week I found out that the lump in my neck/shoulder isn't what Drs have been saying it is for the last year. Here's the story of the lump :)

October 08, I'm pregnant, just diagnosed with Budd-Chiari and my blood disorder. And the lump on my neck that I though would just go away after a few months, is still there. So I make an appt and go in to see what the Doc thinks. Ultrasounds are done and its said to be a lypoma. Just a ball of fat, that will disappear after I lose my baby weight.

Next I bring it up to my transplant Doc at one of my visits after I had the baby and he decides to order a MRI with contrast. Its scheduled for April 09, a day after my liver biopsy. The following month I go to see him and he tells me that what it "really" is, is a hematoma! A bleed in my muscle. OHHHHH, ok so end of story, OBVIOUSLY not.

I see a hematologist every month to measure my bloods INR. So I mention my newest diagnosis and he says he doubts that, because it to hard. What the hell already! So now a year later, I went back in for another ultrasound so that my Hematologist can compare the image with my first one. He was looking to see if it had grown and was talking about having a biopsy done. So I go in, and the nurse starts my ultrasound, then lets me know that shes going to get a Dr. At this point I'm freaking out. The last time an ultrasound tech got a Dr, it was to tell me that my liver was huge. I tried sending David a text, but the signal was cut. So I played some solitaire on the phone while I waited. Only thinking the worst of course. Then in comes a Dr, they continue looking and then the Dr asks me what I was told this was. I said first a lypoma, he says No. I say then a hematoma, he says no again. Then he tells me that its a mass, a solid mass and that he would feel better if it just came out and fast. He said he wouldn't even bother with a biopsy till its out. And then he left and the lady walked me out to the hall where the boys and my MIL were waiting.

My head has been all over the place since then. What is a mass anyways? Cancer or not? When will this surgery be? How long will I have to stop breastfeeding? How much will this cost? Why me? Who ever said God will never give us more than we can handle, might be wrong. Because I feel like Im drowning in bad news. Just a bit of good news would be nice. Anything!

1 comment :

  1. Dear Lumpy-

    I'm so sorry to hear about your neck. I faced a very similar situation with my daughter this year. She had the growth for 4 months and we went through pretty much the EXACT same series of events that you have now had to endure, must be something SA docs arent used to.

    Before you start reading, don't let what i'm telling you worry you, everything ended OK (it reads kind of scary)

    Anyway, my story ended like this ... our lump eventually burst open. Four days before I had my thrid child, I took my 2 year old in for emergency surgery. I was horrified. The DR says he excised as much as he could but couldnt go any further for fear of clipping her artery. You'd think this would be the part of the story where you start to get answers, but nope it doesnt get any easier from here. Her biopsies were lost, DR's were all deployed and the specialists refused to provide any assistance. We waited four more months still without any answers as to what it was and the spot continued to be irritated. It burst open again and I was at teh end of my rope. Finally, I got a call from the child cancer center - they asked me if I could come in right away but they couldnt tell me why. I go in (a complete wreck) holding my daughter as tightly as I could. I hear stories from the mothers in the waiting room - they had all received similar calls only to find out there children had cancer or blood diseases. I make peace with what is coming and prayed for the best. I waited 4 hours only to have a special DR tell me they still arent really sure what it is but they're pretty sure it was an atypical bacterial infection. I've gotten over it now - but my daughter still has a nasty scar on her neck. No sign of anything returning so maybe they were right, i hope your lump turns out to be no big deal either. Let me know if you need someone to talk to, sounds like you could use a good friend. I just so happen to be a pretty good one :-)