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.

The Advantages of Being Bald

Now that the hair on my head has been gone for a few days, I’ve discovered several advantages to being bald. First and foremost: no bad hair days. My hair is baby fine and wispy, so it was always very difficult to get it to look good day after day. And I’m all thumbs when it comes to styling my hair. I finally gave up and went for cuts that I could just throw in some gel, scrunch, and go. My hair never looked the same two days in a row no matter what I did.

Another plus, I was always having to use a hairband to keep hair off my face when using a facial scrub or a masque, otherwise half of the gunk ended up in my hair and I would have to wash it again.

It doesn’t take as long to shower in the morning because I don’t have to shampoo and condition my hair. And I don’t have to spend time messing with it after I’m dressed.

I can change the hat/scarf/wig I’m wearing on any day to match my mood and/or my outfit.

I’m saving money on shampoo and conditioner and gel. All I need is a quick wipe over with the washcloth and I’m done.

No hair to clog the drains.

No hair all over my pillow to get up my nose and wrapped in my eyelashes.

No stray hairs getting stuck in my glasses and driving me nuts waving in front of my eyes.

I’m sure there are more advantages, but these are ones I thought of this morning.


Chemo went well today, although there was a moment of panic when no blood was being pulled out of the port; that’s never a good thing. But fortunately it worked on the 2nd try. The site is still tender and poking it more than once with a needle isn’t fun! So the infusions went well and only took about 4 hours.

The main side effect I seem to be having is bone-crushing fatigue. Consequently, my treatment team strongly suggested that I not go to work for the rest of this year and they will re-evaluate in early January. I was only putting in a couple of hours a day at most, because that’s all I could handle. But they are concerned that those hours will deplete my strength even more, and I need my strength to fight off this dreadful disease. (I would much rather be at work than having to fight cancer! But I don’t have a choice.) So I’m hoping my disability policy I’ve been paying on for a year and a half will pay out like they’re supposed to. And of course now I wish I had paid a little more and bought the cancer policy – but hindsight is always 20-20 isn’t it?

So I’m spending my days reading, writing, napping, and playing on the computer. And when I feel up to it, venturing outside the house to the store or to take pictures. Being out in nature is rejuvenating, so I try to at least sit on the back patio for a little while each day for fresh air and sunshine.

My hair is continuing to thin but isn’t falling out in chunks yet – I’ve been told it will. Oh, joy! But I’m prepared, at least physically with hats and scarves and a possible wig. Mentally, I’m not sure one can be prepared for that sort of thing. I admire those women who can go out with bald heads uncovered, and who knows, maybe I will reach that point, too. Because we all know that ‘bald is beautiful’, right?