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Archive for June, 2018

Those Mel Brooks fans among you will recognize the voice of young Dr. Victor Frankenstein (played by comic genius Gene Wilder) commanding his servant, the hunchback Igor, (another comic genius, Marty Feldman)  to bring him the brain of a prominent & brilliant dead scientist, a brain which will complete his creation and redeem his family name. (Igor famously brings him another brain, from a specimen jar labelled “Abby…normal”. Yuk yuk) 

Now following 19 days of radiation therapy to my skull, I cannot decide if I look more like Igor with my cute head wraps or perhaps, with the scar tissue, it’s The Monster (Peter Boyle), that is my doppelgänger.  

No, I think that one have to conclude that the movie star most likely to play me, being me right now,  is Richard O’Brien as Riff Raff in the Rocky Horror Picture Show (Of course, I would have preferred Susan Sarandon:  I read somewhere that she has the best rack in Hollywood.  Really.)  Richard wrote all of the music for the RHPS, and the signature song “Time Warp”, was actually an afterthought because they were running short and needed filler. Really.   

It is an odd feeling, waking up one morning and literally, not recognizing yourself in the mirror:  huge chunks of hair fell out overnight, leaving me with wispy bits around the crown and long straggly bits to the shoulders.  It exposed my 14” of scar tissue in all of its pink and ropey glory.  I was really hoping to have that evidence hidden for a long time.  I have big issues around personal privacy (as in, I need a lot) and having to wear a head scarf that screams cancer patient makes me cringe.  I see young girls and women in the treatment room who proudly show off their shaved bald heads:  but for me, I never want to be defined by my condition.  

And so, well you might ask, why was I not mentally prepared for the hair loss?  The radiologist told me it was coming and so did the genuinely sweet young technicians in Treatment Room 16, my daily destination for 5 minutes, 35 days in June and July.  You can see in the photo the huge machine that they roll me into:  first, they put me in my personalized mask, affix the mask to the table, start the tunes (I have heard everything from Louis Armstrong to Guns n Roses) and then quickly scoot out.  The machine starts moving around me, delivering green radiation beams from 3 directions, and before the chorus to “Sweet Child of Mine” is finished, they are back to release you.  The custom mask is made of a plastic mesh material, and it is snapped down and in so tightly that I sometimes have mesh tracks on my forehead and nose.  Nice. 

So again, why was I not prepared? Well, I do believe that the good Dr. underestimated the area required to ensure complete treatment.  The regrowth is only 6 cm long and 1 cm wide. The thickness of a piece of paper.   And because it is growing flat on the top left side, they need to target the beams from an angle that skims the skull all around the area.  Picture shooting beams at the top of an orange to target just the surface peel, and that is pretty close.  

So much larger than the regrowth area is perfectly reasonable, but I am stunned to have lost more than half of the hair on my scalp. Not to mention that there is hair everywhere, in the toothpaste, in the hand cream, in the mascara, and for awhile there,  it was reminiscent of being up north in mosquito season, except that instead of bugs, I was breathing in strands of fine hair through my nose and mouth!

In the interests of making lemonade from life’s lemons, last week I visited Lora, the lovely and compassionate owner of the medical wig store here on Oakville.  I bought a variety of pretty head coverings:   a few of them are definitely channelling the whole Woodstock ‘70’s thing, which is cool, since I missed being a flower child the first time through.  (Ironically, we just watched the opening sequence of the brilliant 70’s movie, American Hustle, in which Christian Bale carefully pastes down his combover and hairpiece.  Too close to home!)  I  will likely order a stylish hairpiece through her as well:  the only downside of the easy care synthetic variety, is that you cannot BBQ or even open a hot oven with it on! Melt Down Madness!

Will my hair ever grow back?  The answers range from maybe to not completely to not likely.  We will give it a good 6 months before I order an expensive piece of natural hair.  Chemo patients have a better history of regrowth:  radiation is so hard on the skin.  

So again, why so unprepared? And why so upset? I was and still am.  Getting past it, but of course, it is well known that women have a fundamental attachment to their hair.  Crowning glory.  Defines and expresses one’s feminity.  A tool of seduction when tossed in the right direction.  Why else so many products, salons and appointments? You may have gained a few pounds, but your hair can always look good.  You may need a morale boost, so get a new cut or colour. Only compliments will ensue.   Do you remember the old song, “I’m going to wash that man right out of my hair”.  A bit before my time actually, but I always appreciated the sentiment. And of course, nothing says “still young” like a full head of bouncy, shiny hair.  Pale blond wispy bits floating across a pink scarred scalp says “frankly darling, its a head only Ben could love”.  And that is a darn good thing too.

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Most of you will allready know about this development, but since this morning is the first day of my radiation treatment, I thought that I would update you all. Here is the email that I sent out shortly after I knew about the regrowth.

In the interests of not having you look at me strangely when next we meet, and of course,  because I consider you to be a friend, I wanted to let you know that my menginioma has resurfaced, and that i will have to go in for targetted radiation treatment this summer. The treatments are quick and painless:  15 minutes a day,  M to F, in Toronto, for 7 weeks.  
 
The most painful part will be getting there and back, but traffic does slow down during the summer.  
There is a high probability  that I will experience fatigue as well, so forgive me if I am not my usual bouncy bubbly self.  (I have no idea how “fatigue” differs from just just needing a nap in the afternoon, which I do so enjoy) 
 
The strange looking part is that the hair on my head in the radiated area will fall out about 3 or 4 weeks into it. Regrowth may take a year or more, or if ever.  So if anynone has any good ideas or sources for weaves, partial wigs, even comb overs, bring it on! I left my wig from post- surgery in SMA, but a wig can get hot in the summer. 
 
Other than hair loss and fatigue, the doctor expects no other side effects and the progonsis is good. Our hope is that this treatment will finally stop the little bitch from creeping further across my poor knobby scarred skull.  
So the Update:
Since we have been considering replacing Ben’s almost 10 year old car for a few years now, we decided to accelerate the decision (an almost pun):  last night we bought a low mileage grey Lexus 350 RX to make the drive into Toronto easier.  I am not really a car person,  but this is one sweet ride (custom interior, best sound system, shiny sparkly wheels, oh my.)    I will spend the drive into Toronto with my head in the manual, trying to figure out how the audio system works.
I have already had a consultation with Lora, the warm and friendly owner of Medical Wigs here in Oakville.  I saw Lora almost 2 years ago when I bought a wig* to cover my head which had been completely shaved off before my tumor surgery. (See my blog from the summer of 2016 for the photos. I have a happy but strange smile.  The photo below, taken at my brother’s wedding, is with about 2 months growth).
She is still dispensing wig wisdom, and has assured me that I can have a hair piece made to cover the roughly 12x10cm blank spot and that it will enhance my overall look by adding height, readimade curls, and beautiful bouncy shine.  There you go, we have made lemonade.
Onward! 
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The Road Travelled Well” blog
* The “Miley Cyrus” model at the height of her twerking nonsense – women with greater sensibilities than mine refused to buy it based on the name. I thought it was mildly amusing.

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