Friday, November 22, 2013

114 Days

It has been 114 days since I first heard the word "amyloidosis." I don't remember much about the phone call from my nephrologist on July 31 -- other than she sounded like someone just died. And she said that she was sorry. I had her spell amyloidosis for me, and I jotted it down, but for the most part I was extremely confused.

August and September were somewhat of a blur. I was referred to hematology. Had a bone marrow biopsy. Heart tests. A fat pad biopsy. Blood and urine tests. I went to Mayo. Old tissue samples were stained. It has been 114 days of worrying and waiting that has all led to this:

Today my hematology team broke up with me. And they didn't even pull a George Costanza ("it's not you; it's me"). Nope. Instead they told me it was because of ME -- or more specifically -- because they can't find evidence of amyloidosis in me. I received an email that read, in part, that "we are very confident in our assessment that you do not have amyloidosis." They do not feel that I need any follow up in the hematology clinic. They did, however, recommend that one of my other doctors check for abnormal proteins once a year.

As far as hematology is concerned, amyloidosis is off the table. While this is a great relief, amyloidosis will always be my Boogie Man. It will be the shadowy figure lurking in the dark. And I'm not sure I will ever completely let my guard down -- especially knowing that my proteins will continue to be monitored.

So where do we go from here? I see the liver doctor on Jan. 3 so that he can weigh in on my liver issues, and then I see my nephrologist on Jan. 13. I'm guessing that the diagnosis will be fibrillary glomerulonephritis and that we will finally discuss a treatment plan (Rituximab infusions) in greater detail.  


Thursday, November 21, 2013

The Suckage Scale

I had a liver MRI last week, and here's what I learned: they should never shove an overweight woman with anxiety into a tube. I found the test uncomfortable. There is no physical pain -- you just lie on your back in a tube -- but it's loud and confining and I fought claustrophobia the entire time. Thirty minutes seemed like three hours.

Afterward, I needed to vent. I am so sick of these tests and just needed to complain a bit before regaining my composure. I texted my sister Danielle, who is A.) hilarious and B.) colorful in her use of language. Most of what we text can't be repeated here, but trust's good. She's always able to make me laugh. She's also empathetic but doesn't pity me. I appreciate that. Anyway, in one recent conversation she was asking me about a test and wanted to know how it compared to the other tests I've had. More importantly, she wanted to know if it was "complete suckage." 

Complete suckage? Lol. Never heard that one. That's when I knew I needed to create a "suckage scale." So, for you Danielle, here's my take on some of the tests I've had the last few months -- and how much they sucked. 

 (Thanks to my friend Jason for the artwork!)