Medical update

Dear friends,

Last week I had a bone scan and a photo of my pelvis was made. I know, it sounds a bit odd, not like something you’d hang on the wall (although it might look interesting!). I also asked for a copy of my MRI and CT scans from March, which I received very quickly. And Wednesday I had an appointment with my doctor of internal medicine & oncology at AVL. Good news: nothing can be seen on the scans. I suppose the bone pains I get from time to time are caused by the medication I’m on (Letrozol) and perhaps because of over-exertion (yoga/pilates).

The results so far are great: the only remnants of cancer are in the liver. The blood values – specifically the tumor markers – are fine: CA15.3-II is at 13 kU/L and CEA at 6, meaning they are both within the normal range. My bilirubin levels are at 6 (micro mole/L) so that’s good too (when I was first diagnosed, it was at 50!). Only the other liver values remain high, but there’s nothing I can do about that.  When I return from my trip to the US for the patient conference, I will have another CT scan on April 30th to see if the lymph nodes are still swollen.

I just wanted to share a short film from Living Beyond Breast Cancer about women who are living with metastatic cancer. LLBC is organizing the patient conference that I will be attending while the rest of Holland is celebrating King’s Day (and my father in law is celebrating his 90th birthday). As you will see in the short film, these are young, strong women who were diagnosed years ago! I want to share the same message here: living and perhaps thriving with metastatic cancer is possible. Victor told me we got a call to participate in a research study about women who are tired after receiving cancer treatment. Since I wasn’t there he told the interviewer that I don’t have problems with excessive tiredness, sure I get tired at the end of a long day just like anyone else. Then he asked her, but you’re probably not asking patients who are metastatic, right? And she answered affirmatively. If your wife is metastatic, she can’t participate in the study. So often, we’re excluded from studies or ignored when there’s no reason for it. Sometimes it feels like people are afraid. As if you’ll die in front of them. Well, there’s nothing very wrong with me or anyone else with metastatic disease. As one of the women in the film so aptly puts it, “it’s not that I’m living with cancer, but cancer is living with me”.

I leave for Philly on April 23rd, the day after our anniversary. Take care!