Phantom Hair


I am now 32 days past the stem cell transplant on 9/28.  After a three-week hospitalization, much of which I don’t remember very well, I am recovering and doing well. Parts of this process were very unpleasant and difficult but I am happy to have come through it all now and am in the critical 90-day time period when I am pretty much not allowed to go anywhere or be near other people who could make me ill.  So, a lot of time here at my sister’s house in Texas, resting.  One of the more unpleasant side effects of the terrible chemotherapy given to me as part of the transplant conditioning process (i.e., massive dose of very toxic chemotherapy to kill off as many cancer cells as possible before infusing my stem cells back into me that had been harvested a few weeks earlier) is that chemotherapy wrecks a lot of the healthy parts of your body, too, temporarily but no one knows when the effects will wear off or even what particular effects one might have.

I can’t taste much of anything and what I do taste isn’t so good, making eating a chore but something I must force myself to do in order to sustain my healthy recovery.  The good news is that my bone marrow is functioning at a normal level (more than less) now and I even have a new immune system growing, too.  Unfortunately, I have lost all immunities to every childhood disease and vaccination I’ve ever had and will remain very vulnerable to flu and other such things throughout the coming winter months.  My immune system will not be strong enough for me to receive new vaccinations until a year from now, so I have restrictions on travel, too, but bit by bit and with being careful, I will be okay.

The more frustrating side effect has been the effect on my brain, what is commonly referred to as “chemobrain.”  And, also an effect of the transfusions and drugs is that my eyesight is still not right nor is my hand-eye coordination.  Thus, I have been unable to read and write for most of the past month but am slowly forcing my eyes to read more each day now.  As for the other stuff, well, it’s all a matter of time and patience and remembering that these first 90 days will be a time of acute transformation and, hopefully, restoration by the end of the year.

One other effect of the chemo is hair loss and I did, indeed, finally start losing my hair about ten days after the transplant.  I had already cut off my long hair myself, about a month before the transplant, as it was beginning to shed from the other chemo I had been taking from May through August.  I wrote about cutting my own hair, part of it tongue in cheek, part of it in defiance and anger at what this entire experience of cancer treatment brings out in terms of control and submission, big issues for anyone with a serious illness that requires a lot of medical intervention and invasiveness if one chooses to go that route, which I did.  I still believe I did the best thing I can, for now, to extend my life and the time of being in a long-term remission for years to come. So, losing my hair was not a big deal.

As soon as my hair started falling out everywhere in the hospital bed, I requested that my head be shaved.  I’ve never had my head shaved and was startled that the final result looked like I had a skull covered with a five o’clock shadow of stubble that felt like rough sandpaper.  It was not pleasant to the touch, not the baby smooth scalp I imagined.  I had already given up on any semblance of vanity by this point since being sick in the hospital pretty much requires letting go of all inhibitions in order to get through some gnarly moments that would otherwise be humiliating.  My newly bald head was a novelty and I couldn’t help comparing my swollen, bloated self to Jabba the Hutt or any of a few other well-known baldies my family came up with (Mr. Magoo being my favorite).

Hair is so subjective and so integral to our self-image.  I miss the long hair I had finally grown out below my shoulders the past year but figure it can grow back, maybe.  They say that when the hair does begin to grow back it often is a different texture, maybe curly, and maybe a different color.  I’ve heard these changes aren’t usually permanent but I am game to see what’s next, what’s new. Surprisingly, I have had no desire to cover (i.e., “hide” or disguise) my head (except for warmth) when going out in public (rare but still necessary with careful precautions in place, like a paper mask).  Not even scarves.  I like wearing hats and do, again, for warmth, but otherwise feel a strangely liberated sense of being exposed that does not bother me.  It’s a kind of honest nakedness, almost, with no hiding, and I am surprised to have adapted to this vulnerability as well as I have thus far.

What I haven’t adapted to, though, is what I am referring to as “phantom hair”–a phenomenon similar to the more well-known one of phantom limbs or the sensation that many amputees have when still feeling their missing limbs are attached to them.  I had done some reading on this before as part of an inquiry into the complexity of what are called mirror neurons and my deep curiosity about perception and sensation.  Nowhere had I read (yet) of what I am calling phantom hair, but here is what it is for me.  I walk into the bathroom, prepare to take a shower and realize I don’t have shampoo or my regular “hair” towel with me. Then, I touch my head and realize that I don’t have any hair to wash. This happens every day.  I open the drawer where my hair brushes are kept and think it’s time to brush my hair, only to quickly realize that the hair I want to brush isn’t there, even if I “think” it is and almost always reach to touch to verify it isn’t, not to mention the quick shudder of imagining what my hairbrush might feel like on my barren scalp.

None of this is profound, just part of a process of healing and transformation that fascinates me now.  In the spirit of joy that I nurture throughout all these tough times, I played “make-over” with several of my sisters earlier this week and present here the photos of what was a most joyous embracing of my bald beauty.  It’s more than skin deep or superficial but being able to play at this point, even when I don’t feel so great, is also a sign of deeper healing.  I am so very grateful for the chance to experience all of this.


Photos were taken on Monday, 9/26; bottom one was taken yesterday (9/29) and reflects how I’m feeling now: Good!

3 thoughts on “Phantom Hair

  1. Linda, and bald head artists, you have done a beautiful job that may well put the henna artists out of business. Great look and lovely innovation!

    Linda, we love your resilience, curiosity, positivism, and eloquence despite the chemobrain. You are an inspiration! Keep up the great healing work!

    With hugs as big as Texas,
    Jon and Linda

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