About Hair

About Hair

November 24, 2016

I stood by the edge of the sink for as long as my weakened legs would bear me (several minutes only), but took that time to just comb through my hair. It’s not a thing I do often – as a curly-haired girl I was taught long ago to just run a pick through it in the shower while the conditioner is still in, rinse, and then leave it be.

But I combed and combed, and with each pull came large chunks of my hair with it.

The likely culprit was not the arsenic that is currently being pushed through my body daily, but the idarubicin that I started on day 2. It stays in the body for about a month, so even though I stopped taking it over a week ago, new effects may still make themselves known yet. And when this all began, when the discussion of losing my hair came up, I shoved it off.

Who cares? It’s just hair.

It's just hair. Right?
It’s just hair. Right?

But is that I how I really felt?

So with these few minutes alone, staring in the mirror, combing, plucking the brush of a mound of hair and then combing again, I just wanted to give myself that time. To truly test my emotions about it. I’ve read a lot about people who are at this stage and face an emotional debate of whether to shave it all off or to hold onto it in hopes of something salvageable. I do not have very thick hair to start with, so I knew that the latter was not probably possible. Clearly, now was the time, but was I ready for it?

It took me about half of those few minutes in front of the mirror to say: Hells. Yes.

It really is just hair. And for me, it’s not that great of a mane to begin with. Rumor has it that for many it grows back more full and lush than before, so bring THAT on.

Also, WIGS. Purple wigs, red wigs, pitch black wigs, I’m going bold and I can’t wait to start shopping.

And, SCARVES. My sister already bought me a lightweight navy blue turban that I love, and I can’t wait to add a bit more variety.

So in all honesty, this doesn’t bother me. Although I do have to say that I am not quite brave enough to show you a photo of my all-bald-bad-self yet – the nurses and other help around here buzzed me, and while they are all wonderful individuals who do their job very well, but they aren’t exactly hairdressers. It is still a bit patchy and once that all goes then I promise I will.

Here is what a puffy leukemia patient looks like. I think I look like some of my uncles.
Here is what a puffy leukemia patient looks like. I think I look like some of my uncles.

(Also, hilarious story: the shaver went dead about 4/5 through my buzzcut. So I sat with a very bizarre punk hairdo for about 2 hours while the shaver charged. It was pretty funny, but I am also not brave enough to show you that photo either.)

OTHER UPDATE

Last week was pretty dark. For some reason, I had it in my head that I was going to be one of those stories that you hear about of people who breeze through chemo without issue. I did pretty well for awhile, and then day 9 hit. Then came nausea, so much pain in my mouth that I could barely talk (I still haven’t eaten anything solid since day 9 and today is day 18), I discovered the unsexy joys of wearing adult diapers, obtained a urinary tract infection, and more. I didn’t get out of bed for 6 straight days except to go to the bathroom. A few people came to visit but I could barely raise my head.

And then I was told I have APML Differentiation Syndrome. My white blood cell count started to go back up (it should be hovering not much higher than zero for awhile yet), along with some weight gain (hard to consider given my lack of food intake), led to the realization. Thankfully, it didn’t get too high before an astute doctor called it, and started me on steroids to reverse it (so far so good). It’s not typically fatal, but it could have caused me to stop chemo and let my body rest while they sorted it out. This would mean I would have had to add any missed chemo days to the end.

To tell this to a physically ailing, vomiting, bloated, debilitated woman who can’t eat or barely talk and isn’t even halfway through this initial 36 day “induction” chemo session, on a day when she had both lines into her body plugged with a variety of fluids for nearly 18 hours (I wish I had the wherewithal to count the bags – must have been at least thirty that day) – I completely crumbled.

For the first time, I felt like holy fuck, this is really, really, cancer. That word doesn’t have to mean a death sentence, and I still believe that it doesn’t for me (although I will admit it got a bit scarier), but it is nothing if not a long series of BATTLES. Daily, sometimes even hourly, to just remember this is all another step in the journey. Just one at a time. It’s not going to be easy, and it’s going to be long and full of these shitty days, but I have no choice but to bear them and just get through it. (And after that I will turn this into something positive – I don’t know what yet – but all this bullshit must turn into something.)

THE LAST COUPLE OF DAYS

Have been a bit better. I am still dealing with most of the above (although the nausea has abated), and I have a bit more energy (I walked about 100ft yesterday which was a HUGE win), and I’m bald, but whatever.

I am surrounded by so much love, Pete and my mom have been relentlessly and affectionately by my side every day. I wake up every morning to an inbox full of messages of support that I can’t even begin to answer them all. The staff here are starting to ask questions about the crazy amount of cards and gifts that decorate my room. One of our readers is a nurse on this floor! She had the same form of leukemia when she was five years old and she has since cycled across Canada five times. Sources of inspiration and love are everywhere, and I am sopping it all up. Thank you, once again, everyone.

All I can do is end this update the same as the last one, with huge amounts of gratitude and thanks. And hopes for a few better days like today. Oh, and maybe a cheeseburger would be nice (I’m told that I have at least a week to go for that one).

Much love,

Dalene
 
 
 
 
P.S. WTF…Cancer? Wondering how I got here? Start with this post.

32 Comments

  1. I am so inspired by you, Dalene! I’m not sure I would have the same strength and I am in awe of yours. I am keeping you and Pete in my prayers daily. Love you guys!

  2. Oh, Dalene. Tears in my eyes here at work! That all sounds so truly awful, and yet here you are writing about it with poise and a sense of humour. I’m truly amazed. Kick the shit out of that cancer!

  3. Hey Dalene, you’re a fighter if there ever is one! It takes so much courage to take on all this “bullshit” and share your deepest, darkest feelings with the world too. I have so much respect for you, and no doubt that you’re going to get to that burger and love it 😉 All my love and hugs!

  4. Keep fighting Dalene! I can’t imagine what you are going through but you find moments of laughter in between and that is so very inspiring. Your strength and courage to write and talk about it is amazing. I want to deliver a cheeseburger to you so badly.

  5. Dalene, I don’t think you look terrible in that photo you posted at all! You look strong and determined and like you are putting up one hell of a fight. You have been put through the ringer and may feel like shit, but it sounds like you are getting excellent care and are surrounded by so much love and support. Hold your bald head high!

    (Also: Yay for wigs! As a fellow dark-tressed lady, it has always been such a pain for me to change up my hair colour. I always say that when I finally go grey, I’m just going to start dyeing my hair funky colours. Wigs make it even more versatile since you can pick a new colour every day AND change up your style too!)

  6. I have followed you for awhile now and appreciate your honesty about what you are currently going through. I wish you the best

  7. The way you handled losing your hair is incredible. I can’t even begin to imagine how hard everything must be, but your spirit shines through it all. Looking forward to seeing the wigs showing the world that your victorious and that you’ve got this.

  8. You have such a great attitude! Keep fighting and when you feel well enough, updating us. We are all sending positive thoughts to you through this BATTLE!

    Rock the bald head, wigs, scarves, whatever. Just continue to take care of yourself and let your friends and family continue to do what you cannot do.

    🙂

  9. I keep thinking of you two. Your honesty of baring yourself is brave and Inspiring! I have followed your blog for quite awhile. I use to travel quite a bit and admired your decision to just follow your heart to go and discover. Due to illness, those days have been temporarily put on hold. I just want you to know that I am always sending very positive thoughts your way. This is a speed bump in your travels that requires a long layover. You are strong in your soul and you will beat This!

  10. You are amazing…continuing to blog while going through chemo and the loss of your hair! Thank you for sharing and being so brave at such a difficult time in your life.

  11. Thank you for sharing your journey and all of these experiences. Here’s to hoping your mouth feels better so you can enjoy a legit non-hospital food cheese burger. Take care

  12. I don’t know your uncles, but I think that you look kind of cute! Which is quite a feat, under the circumstances! Wishing you days of crazy wigs…they’ll look great with your kick-ass attitude. Hugs.

  13. Dalene,
    So sad to hear about your illness. I have ITP too, but it’s called idiopathic as they don’t know what causes it. You are so strong and brave to share your story with us. I wish you a quick and full recovery. Will be praying and thinking of you! Have enjoyed following your blog! Keep us posted if you can.

  14. You are so strong Dalene! A true inspiration to others who will take on this beast as well. All my thoughts and prayers to you.

  15. Thank you so much for continuing to share your story. I have had at least 9 friends now with breast cancer, and both my parents have survived it. It is a tough, ugly disease. But by sharing your voice and your story, you are inspiring so many. There are so many incredible stories out there. Thank you! So keep on writing…..:)

  16. Dalene, keep kicking the hell out of it. And wigs, yeah, I’m thinking old school…. Maybe Diana Ross style, a Dusty Springfield blonde beehive would be fun too. We’ll want pictures of the wig parade! Hang tough. Keep fighting and writing.

  17. The first half of 2016 I received regular treatment with Doxorubicin, Bleomycin, Vinblastine (which I learned was first isolated from the Madagascar periwinkle) & Dacarbazine (ABVD) (All names fitting for a gang of super villains!) yet I have not lost my hair (yet).

    It’s a difficult place to be “Down the Rabbit hole” as I put it, and a there were a few times I almost didn’t make it back out (It’s been a rough year).
    Now on 2nd line treatment using a biological drug called Brentuximab Vedotin I’m getting a HUGE change in results).

    Gratitude for those who have offered hours of selfless helped to strengthen my resolve and hope for the future.

    Managing treatment becomes an ongoing chore with so many appointments to connect with a foggy “chemo brain”.
    “Trust but verify” everything (Things do get mixed up & I’ve caught a few items I questioned).

    Living with compromised immune system sucks (“Wash your hands & don’t touch your face” I was told over and again).

    Stay strong, get well! You have another story to write!

    Dean

  18. tears over here…so much love and positive vibes coming your way from me and Anne…dammit dammit….WE are going to beat this…as a team, you, me, and the entire travel industry, we are all fighting at your side Dalene. Keep positive, keep smiling, watch funny movies, be inspired. That is A HUGE part of the recovery.

    At your side,
    Mike

  19. Dalene my heart, my head and hell – my whole being, goes out to you. And Pete, and family. Keep on keeping on, because the only way out is through. But rest assured, we’re all here for you. Much, much love and support. xxx

  20. First of all you look cute with the blue “hat”…have several friends who’ve gone thru it with breast cancer and the hair can even grow in curler as well as thicker. So rock the hats and wigs and know it’s just another blip on the screen. I found what one friend did was really helpful for her and all her friends….she had a private group on Facebook that were by invitation only and she/we blogged in it daily. A nice support group and connection for all involved…just a suggestion if you feel up for it….stay strong and positive…looking forward for the next adventure…?

  21. Agreed – it’s just hair. And as someone who has been wrestling with curly hair all my life, I wish wigs were the “norm” – oh, what fun we would have with different looks!

    So glad to hear the past few days have been a bit better. I agree re: the cheeseburger – GREAT goal!

    And as Mike Howard said, this Travel Tribe of yours/ours will be beside you every step of the way. Rooting for you, screaming for you on the sidelines and watching your triumph after the New Year.

    You got this.

  22. You’ve got this, Dalene! Keep fighting and know you have an army of people who are behind you.

    And about the hair…I’ve had alopecia areata since my early twenties and my hair comes and goes. I’m with ya – whatevah. I’ve learned that hats and scarves add great colour around my face. 😉

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