Hello, is this the friend in need is a friend indeed network???
First let me apologize in advance for dumping all of this in an email. I haven’t been able to hold a “dry” conversation yet and am still processing the news. So here goes…………….
I am in agony. George’s blood tests came back and indicate that he has amyloid in his blood system. Amyloid is a rare condition that starts in bone marrow and spreads throughout the body via the blood system. It attacks organs until that organ can’t function anymore. Right now, the thought is that the only organ that is impacted is the heart. We spent the day yesterday at Boston Medical Center – one of the two places in the country that have an Amyloid Clinic. Yesterday was focused on more blood tests, an exam and a biopsy. The biopsy was like a little liposuction and the results will indicate whether or not amyloid is in the fat cells – if it’s there, then it’s in the heart. All of the symptoms that George has experienced, including the thickening of the heart muscle which then reduces the size of the heart chambers, can be traced back to amyloid.
Next Monday, we go back for the kickoff of the three day evaluation – the worst of it is the bone marrow biopsy. A long needle and hip bone is all I need to know. We’ll finish up on Wednesday – it’s all out patient so he can come home at night. All the results will be back in about a week.
Once we know the extent of the disease, we can figure out the treatment plan – it will involve some kind of chemotherapy, either oral or via IV. There’s no cure, but there is a high remission rate – 70 to 80%.
I keep focusing on how lucky we are to live in the Boston area (if we had stayed with the cardiologist in Brockton, it never would have been found – once amyloid takes hold and is not treated, it can result in death within 15 months); both my office and George’s office has been so supportive and I have a great family and friend support network!!
Tom’s been terrific – he knows only that George needs to go back to the hospital for tests and that we are looking for something that will make him feel better. I explained all this to him yesterday and he said “ok – do we have any Oreo’s?”. But of course I had already eaten those.
When an event like this happens, it really does put everything into perspective. Everything at work – all the deadlines – all the stress – has been downgraded. Traffic jams and delays just give me time to think quietly – don’t even need the radio anymore. Tom and I studied for his test tomorrow by candlelight because it seemed more fun. Maybe simplicity really is best.
Please keep George in your prayers! I’ll keep you posted on how things are going.
and …. I need a pizza night!!! well actually, maybe a wine night.
I’ll talk with you soon,
~Jayne
radiate harmony 