Discouraging News

My CEA level (tumor marker) went up from 20 to 26.1 after a drop last time from 25 to 20. I’m trying very hard not to get really down about this, but I am discouraged. I thought things were going so well, and it’s easy to berate myself for being so optimistic and getting kicked in the butt for it. I know things haven’t gotten worse because of my optimism, but that’s in my head. In my heart, I’m sure I got too cocky and now am getting my just desserts. This head-heart war is tiring.

I know this increase could just be a blip or something, and I’m trying to stay positive, and optimistic, and not worry. But it’s hard not to worry. I won’t have another appointment for a little over 2 weeks, and I know I’m going to fret and worry that whole time. So I have a call in for my PA, who won’t be in until Monday, to see if we can have a discussion about what this may or may not mean. I know my partner and I will worry ourselves silly over this until the next blood test. I have to keep in perspective that my initial CEA was over 70 when I began treatment. I will not panic about this. I will not panic; I will not panic. Okay, maybe for a minute or two.

In the meantime, I intend to eat some chocolate; chocolate is medicine and will make me feel better. 🙂


Yesterday was blood work and treatment day. My white and red cell counts are good and holding steady, and blood chemistries, platelets, and everything else is good, too. So I had my 2nd dose of maintenance Pemetrexed. One thing that the nurses pointed out was my red cheeks and neck, which evidently is a side effect from the steroids I’m having to take the day before, day of, and day after my treatment. I was anxious about the CEA level as it was starting to inch up a bit the last time we checked it. But the result wasn’t available until this morning. My PA called to let me know it had gone from 25.1 to 20 – I could have hugged her over the phone!

I can’t begin to tell you how relieved my partner and I are about this reduction. I was really nervous about it, especially since I’ve developed a dry cough and am having to use the Ventolin again. I’m thinking, and my PA concurred, that it’s probably allergies. March here in the desert is usually windy, and this March is no different. We had sustained 15-20 mph winds on Sunday with heavier gusts, and it’s been breezy ever since. The pollen count is in the extreme range, and will stay that way for a while. So I’m optimistic it’s just allergies. My lungs sound clear with no dead spots, no wheezing, just normal breath sounds. And that’s another relief because the primary tumor had caused lung collapse in the left upper lobe that has since re-inflated.

Now because the CEA is going down, and if it continues to go down or remain stable, I won’t need to have the PET/CT scan until after another 2 or 3 treatments – another relief. And I’m glad I picked the Medicare plan I did, because there are no co-pays and no deductibles; those were adding up a lot on my old insurance.

So today is all good news. And my rose bushes are budding like crazy!

Phantom Hair and Other Musings

Is there such a thing as phantom hair? I know amputees can still feel pain, itching, etc in a limb that is no longer there, and I don’t want to make light of that. But since I shaved my hair, there are times when I see a hair out of the corner of my eye. Sometimes, when I’m putting in my contact lenses, I still use the back of my hand to push hair out of the way before raising my eyelid to put in the lens. If I wear a hat or scarf too long, it makes my scalp hurt the same way my scalp used to hurt if I arranged my hair against the grain. But if I don’t wear anything on my head, my head gets cold. I have longish peach fuzz all over my head, and most of it looks white or grey. It’s hard to tell because it’s so short and so sparse. I’ll have to wait until it’s longer. If it is mostly white or grey, it’s prime turf for some wild colors like purple, green, blue, neon pink – I get excited just thinking about the possibilities!

So things are generally going well. The latest tumor marker blood test shows the value still going down; not as fast as it went in the beginning but still trending downward. I’ve had people ask me what that is, so I’ll try to explain it. The blood test is for CEA – carcinoembryonic antigen. This is actually a protein found in the blood of people with cancer (carcino-) and also in developing embryos (embryonic). Production in a fetus stops before birth and healthy adults usually have a negligible amount of this protein in their blood. An increase in this marker means a tumor is present; if the values go down, tumors are shrinking; if the values go up, the tumors are growing, or there are new tumors, or the cancer has metastasized (spread) to other parts of the body. My value started at 74, went to 34, then to 28, and now to 24. As long as the values are going down, the news is encouraging. I will have another CT scan in about a month, and that will tell us the actual size of the tumor.

So far, I have had none of the really nasty side effects from this chemo. I was originally getting Cisplatin and Pemetrexed. That combination is the one that knocked me on my butt! So they changed it to Carboplatin and Paclitaxel, which I’m tolerating much better. Carbo- and Cisplatin are both platinum-based – maybe that’s why they’re so expensive?? Before the chemo is started, I get Premedications existing of Palonosetron to prevent nausea and vomiting; Dexamethasone, a steroid to prevent nausea, vomiting, and allergic reaction (the same drug I have to take the night before and the day of chemo); Famotidine to treat gastric reflux and heartburn; and Diphenhydramine, aka Benadryl, to prevent allergic reaction. Only after all these are injected IV do I get the chemo drugs, one at a time. You’d think with all that Benadryl I would want to sleep, but the Dexamethasone counteracts that and then some. I usually end up sleeping about an hour the night after I get chemo, and then I’m up most of the rest of the night. So I either read or do something productive like organize the bookmarks on my computer.

Maybe tonight I’ll take something as my team leader suggested today. I hate to add to the cocktail of drugs in my body, so maybe I’ll wait to see how it goes and take something if I really can’t sleep.

So onward and upward, dear friends. Thank you for your support these many months.