NIH & Nantucket this week: Jet-setting?!

Within the next week I will travel to Nantucket and the NIH/NCI in Bethesda, Maryland. I feel like such a jet-setter! ;) Ha. Not. The Nantucket trip is to celebrate our 2 year wedding anniversary and I’m traveling to Bethesda for my 6 month follow up for the Natural History Study of MGUS and SMM. Let’s see, which trip am I looking forward to more?


Ahhh: Rest & Relaxation


Ahhh: Stress & Anxiety


I’m hoping the NIH visit is uneventful… should just consist of labs and an appointment. I’m flying to Bethesda and back to Boston in the same day so there really CAN’T be anything more than that. ;)
When I was at the NIH back in February (Abnormal Skeletal Survey & Perfect Blood Work: NIH Day One  &  Bone Marrow Biopsy & CT Scan: NIH Day Two) I saw Dr. Landgren many other myeloma research fellows. I’m not sure who I will see this visit as I’ve heard which doctors you see can vary each visit as you are monitored for the Natural History Study. I do have quite a few questions prepared with respect to the testing I’ve had at the NIH vs. the testing I’ve had at DFCI as well as my bone density test results.

Dr. Landgren was actually recently interviewed. You can listen to the audio recording of the interview here:

Or, read the read the transcript of the interview here:

The interview is very interesting. Dr. Landgren discussed the importance and availability of new, more accurate diagnostic testing, and his work in studying MGUS and smoldering myeloma. There are many parts I could comment on but one that stood out to me was when he spoke about the incuribility of myeloma. He said this:

“So really what I concluded for myself was that I think the main obstacle why we don’t have a cure for myeloma I believe is because we tell ourselves that it’s incurable. That’s what I kind of dislike. I didn’t like that. So I feel that we have to remove that. We have to stop saying that. So every paper I have written after I kind of came to that conclusion and every paper I will write in the future including papers I will review for journals and I review a lot of papers, I will comment on that to say, “Please remove that because we don’t know that.” “

I totally love that. I wonder if he’s right, what could happen if doctors started using the phrase, “Myeloma is not curable – YET!” instead of “Myeloma is incurable.” ?

It’s all about the mindset, right?! Oh, and the crazy complicated cells and their environment. ;)

Looking forward to jet-setting this week.