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.


8 thoughts on “Phantom Hair and Other Musings

  1. This is a very interesting post, Ruth. I’m so glad the markers are going down and I’d never realised how the blood tests work to show how tumors grow and shrink. I really hope you get to have a full night’s sleep very soon.

    As for the phantom hair – what an interesting concept! My husband lost his left eye a few years ago and he assures me that when he dreams, he can see ‘normally’ through both eyes. Our bodies are amazing things 😀

  2. Thank you Ruth for taking the time, having the courage and sharing with us. It is so good to hear your progress and see those numbers. Someone once told me we are all born with “cancer”, it’s just whether it develops or not. I wonder if they were referencing the carcinoembryonic antigen? Hummmm. Anyway, yes, onward and upward!

  3. Yes, it is interesting, Dianne. Those who have lost a limb dream the same way – they are whole. And I did sleep well last night! But I didn’t notice if I had a full head of hair in my dreams; I’ll have to pay more attention!!

  4. My research shows that the production of CEA stops before birth, but there can be values in ‘normal’ people of up to 5, I believe. So perhaps that’s what they meant by saying we are all born with cancer? Anyway, yes, we are all at risk for developing some sort of cancer regardless of lifestyle, diet, etc. And some cancers grow because of DNA mutations, which now can be tested for and the cancer can be specifically targeted with specific drugs. Truly onward and upward with research!!

  5. Ruth, I wrote a lengthy reply, but it seems to have disappeared. So let me quickly say that I really appreciate your blog, and I’m happy your numbers are still trending down. Keep the faith! It’s so important.

  6. Thank you, Anne. I do have down times, but most of the time I’m feeling upbeat. And I am staying positive most of the time. It helps to know so many people are rooting for me. Thank you for that. 🙂

Ruth passed away from cancer. Please remove from list

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