NIH says, Your m-spike is going up? Is it?

Umm… are those statements or questions?!

Alright, the blog has been very neglected the past couple of weeks between all of my jet-setting to Nantucket and the NIH and with…. dun, dun, dun…. school starting! Needless to say things have been very busy.

So, let’s recap. A couple weeks ago I traveled to the National Institute of Health / National Cancer Institute for my second visit for the Natural History Study of MGUS and SMM. I traveled by myself which was kind of a big deal since it was only the second time I’ve ever flown alone and I was a tad nervous. Of course my flight from Logan was mildly delayed and had to be rerouted due to bad thunderstorms in New Jersey. Bad start to the morning! I found out our plane was going to arrive at Reagan National a half hour late and I was going to miss the NIH shuttle I had planned to take. There was of course another shuttle (2 hours later) but I was worried I was going to be late for my appointment and I didn’t want to wait around at the airport. So, I decided against my better judgement to take a cab.

I tried to convince the driver to give me a flat rate to NIH but he wouldn’t budge. Twenty minutes and a ridiculously expensive cab ride later, I arrived at NIH. Of course because of tight security the cab couldn’t bring me IN to the NIH so I had to take a shuttle to actually get to building 10 since I was dropped off at the entrance completely across campus from where I needed to be. Oh well. A short shuttle ride later I arrived at building 10, had my blood draw, and gave my urine sample. Easy.

I wasn’t sure which doctor I would be seeing at this appointment. Back in February, I saw Dr. L, Dr. R and a whole slew of myeloma research fellows. My husband and I counted 8 different doctors in the room with us. Turns out this visit was quite a bit more low-key. I saw a really nice doctor named Dr. Q. In the appointment room she reviewed my interim labs from DFCI. As Dr. Q looked through the papers, she said to me, “Your m-spike is going up? Is it?”

Okay. And as I wrote at the beginning of this blog post… is that a statement or a question??!!

The thing is, as you look at my SPEP reports from 2009 to present, my m-spike is in fact, going up. BUT, it’s still small and overall “stable” since January, but definitely higher than a year ago.

Dr. Q and I had some good conversations re: my FISH results, bone density, and family planning. It was nice to have a female doctor for once; she was very empathetic to my situation. She told me about a study starting at the NIH using PET scans with a new tracer that is currently used in Europe. They are waiting on FDA approval to start using this. She said she would call me in a couple weeks to review my blood tests. I will return for my third visit in 6 months, and then annually after that. There actually is probably a lot more to write about in regards to this visit than what I am writing, but this is all I have in me for now! I actually recorded my visit on my phone so I will have to review that sometime and share some more details in another post. :)

My second visit for the Natural History Study of MGUS and SMM (minus the stupid cab ride grrr) was no big deal. YAY! Although, I must add on the shuttle ride back to Reagan I did forget to tell the driver which airline I needed…went through the whole airport and I didn’t get off the shuttle. Totally wasn’t paying attention. Driver was not happy. Whoops. But, overall quite less uh, terrifying? than my initial visit.

Abnormal Skeletal Survey & Perfect Blood Work: NIH Day One

Bone Marrow Biopsy & CT Scan: NIH Day Two

And. The best part was my flight was billed directly to the NIH. And. I got a “meal voucher.” Not bad for a day of travel, free second opinion, and donating about 15 vials of blood and a urine sample to myeloma research, right?

However…ahem, THIS is what I got back from the meal voucher:

Let’s see… a five, and three ones. Gee, that’s eight dollars. Yes, that is correct. 8 bucks. It almost covered my bottle of water and muffin from the Au Bon Pan in building 10. ;)