Thursday, August 23, 2012

People say I don't seem tired/More detail on scan

I was really tired for most of yesterday (21st), and wrecked today (due to waking up at 3:30am.) People continue to remark about how energetic I seem. Why is this? Could the steroids still be functioning, or is it the chemo...or the makeup?? Last night I asked Po, So I don't seem tired now? She said no. It's strange.

...We asked Dr. Nelson  today about dealing with insomnia, and where it comes from. She said many chemo patients have insomnia, but it is not from the steroids, or from chemotherapy either, because neither of these things are functioning much a couple of weeks after the infusion. The main assumption seems to be that it is stress/thinking, but I'm pretty clear that's not the cause for me. I feel like my body just wakes up for no reason...or for no mental reason. She suggested Benadryl, and I didn't ask her for anything else (like Klonopin or Ambien.) I figure I can alternate between Ativan, marijuana, Benadryl, melatonin, and valerian, (not in that order) and that oughta cover it! And make sure I walk every day. It wasn't lost on me that the last couple of days sleeping was bad, and on those days I didn't do my 4k steps...

I had a nice mellow day yesterday - a great chapter meeting, a Thai massage, and a lovely little dinner that Karunadevi and Singhashri made. A bunch of folks pitched in and bought me a Kindle and a gift certificate from Amazon which I was exploring last night in the wee hours. Oh yeah, and Dayamudra and I saw Woody Allen! He is making a movie about a block away from here (20th and Lexington) and was standing outside chatting with someone. Various folks, not that many, were sort of standing on the various corners trying to get a glimpse without being uncool. A lady said she saw Cate Blanchett the day before.

A cross-section of my lungs, sort of looking  up from 
my feet. The dark dot is the trachea. The little arrow on
the right (left lung) shows a lit up spot, a tumor
(probably). The other spots on this pic are just
regular lung tissue. 
So Paulette and I met with Dr. Nelson today. She was great! In a way, she's not as warm or funny as Dr. Tavakoli, but I felt that the info she gave was more useful, in the sense that I could understand it! She gave me a copy of the PET scan report and showed me images, and we talked for about 45 minutes.

Before meeting Dr. Nelson, I mentioned to the medical assistant who weighs me and takes blood pressure etc., that people expect you to lose a lot of weight, have nausea, etc., when you're on chemotherapy. She said in so many words that this is an outdated view. The main problem used to be nausea, people couldn't eat, but there are now drugs to control nausea. I wondered if this explained why some people seem to be so set against chemotherapy.

Why comparing tumor sizes
on sequential PET scans
is not so reliable. (This tumor will
appear to have grown.)
About the types of scans. The regular CT scan (not the one that goes with the PET scan), shows you the SIZE of things. The PET scan shows glucose uptake/metabolic activity. Regarding size, the PET scans are harder to compare. This is because the next scan may hit a different part of the tumor (see drawing!) In clinical trials for change to be significant it has to be 25% or above.

The reason I got a PET scan instead of a CT was to do with my pelvis more than my lungs. For just my lungs, a diagnostic CT scan would have been better. (The CT scan that goes with the PET scan is a different kind - it's not diagnostic.) The MRI is for detailed look at very specific area, often soft tissue.

The actual scan. I took a couple of photos of the screen. There is one detectable nodule remaining in each lung. She also said she could see what was probably a little section of emphysema toward the bottom of one of my lungs. (I smoked cigarettes for a long time.) The long and short of it is, because the tumors started off so small and because of the nature of the particular scan I got, things aren't as definite as they sounded coming from Dr. Littell. So, the therapy is PROBABLY working.

My mouth felt a lot better today. She looked at it and said there wasn't active thrush...strange, to me my tongue looks coated with yellow weirdness. What else could that be? Anyway I'm taking 'nystatin', a liquid which is 49% sucrose and is so sweet as to be totally disgusting. Anyway she suggested a warm, saltwater rinse 3 or 4 times a day.

Oh yeah, it occurred to me again that there are other potential scenarios besides "I have/don't have cancer." At the end of the chemo, there could still be tumors - ones that aren't growing...

P.S. Blood tests from yesterday: Everything is normal (including some extra ones that Dr. Nelson put in in case they are causing my face numbness) except neutrophils, which is one of the five kinds of white blood cells. Normal range is 2.1-7.7 K/uL (thousand microliters). My neutrophils are 1.8. So I am slightly immuno-compromised.

1 comment:

  1. Suvarna, Happy Birthday - I know in my heart better things are coming for you. Yesterday I read all about this scan, today when looking for new blog the scan pic looks like a big happy face to me.. good karma!

    luv and hugs,
    Rene' Roberts