Howdy, I didn’t send an update in Sept. as it was kind of boring, so I figured I’d wait until something exciting happened… I’m still waiting, JK.

I had a CT scan right before we headed on our recent European vacation. There wasn’t much to report, which is a good thing. I had been waiting to get some additional comparisons to previous scans. They didn’t see anything new showing up after 5 treatments (which is GREAT) and the areas they were watching didn’t reveal anything exciting.

Lymph nodes they were watching were difficult to visualize and others were ones that lit up with disease on my July PET scan, but were never enlarged. So it’s a difficult place to be as the CT scans don’t show much. We’ve decided to do another PET scan mid-November. This should show any “active” disease and be a better comparison to Julys PET. I’m hopeful by then, after 8 treatments, we’ll have a better idea as to how things are actually working.

 

Fast forward to now (12-2-18):

I had my other PET scan just before Thanksgiving and learned that nothing showed up. This treatment they have me on appears to be working well. No active disease was detected. This is great news, best news possible actually. A Christmas miracle… early…

The plan now is to just stay the course. Keep on with these treatments through December and I’ll have scans again in early January.

I don’t know what treatment I’m on now, I’m no mathemagician, but some of these side effects are pretty amazing. My hair on my head was thinning in August… so I shaved it off. Now my eyelashes are growing and growing and growing. They look ridiculous and have to be trimmed constantly. My eyebrows, or eyebrow rather, is growing out of control also. Hypertrichosis??? I think that’s a side effect of one of my drugs. It’s so amazing. I think my eyebrows are growing into my hairline everywhere (up, down, towards the ears). It’s out of control.

I think people are very confused on whether I’m a man or a woman or transitioning or what? I’m a little confused myself… the long eyelashes look like I have mascara and eyeliner on at times… just a woman living in a constant state of drag… it’s great. My facial (and body) rash is often marvelous. From  a distance I have the red glow of an alcoholic or maybe a light sunburn, but up close I have the complexion of a teenager.

The rash has actually improved significantly and isn’t nearly as bad as it was. Avoiding the heat and the sun were helpful in August and September, it’s nice now that it’s cooled off. Oh, and I found this kiosk at the mall. It’s very helpful:

I am just trying to combat the dry skin now. It’s always a white Christmas (and fall, and Thanksgiving) at my house…

To Wong Foo Thanks for Everything-Jim MacDonald… (To 5-FU Thanks for Everything!! Ha)…

Soon, I’ll be playing the part of the bearded lady at the circus…

or riding around on the roof of a van…

 

I can no longer hide that I have cancer, not that I really care (I’m pretty lucky-I’ve been eased in to this). People see me at the grocery store and give me a look of understanding or sympathy.  I usually just look back and inform them that “Lice is a beach”, so they maybe leave thinking I’m actually a school teacher or found myself in a Billy Madisen-like situation or caught lice from one of my kids at home. I skipped the Rid and went the Wahl shaver route instead… it could have happened.

Not much else to say. I’ll keep you posted on how scans look in January. I have my bile duct stent replaced tomorrow. I have to get it replaced every 3 months, for how long I do not know. Time will tell… It’s a pretty easy in and out procedure (sort of like when you go for an endoscopy), not to worry it’s  accessed via the “upper” GI.

Enough BS for today. I guess that’s all to report. Cheers and happy holidays to everyone.