Month: March 2018

my feet on ice

Comfortably Numb

Just when I am planning on walking for Hospice, I am dealing with a classic Paclitaxel side effect, nephropathy. I thought I’d dodged the bullet. Turns out that this side effect takes a while to show up … sometimes it doesn’t arrive until months AFTER your chemo is done! Bollocks. 

What is nephropathy? 

Essentially, damage to the peripheral nerves – those found in the fingers and toes. This results in numbness and tingling in the hands and / or feet. It feels like my fingers are warming up after being in the cold for a long time … not quite the burning feeling of thawing after frostbite – just the numb feeling. On the toes it feels weird every time you walk. Some people lose all feeling in the balls of the feet. Others have PAIN. Oh please no. NO NO NO

What can I do about it? 

As soon as the numbness and tingling showed up a few weeks ago, I told my Oncologist. She reduced my chemo dosage by 10%, adding offhandedly, “this isn’t the most important part of your treatment anyway. The Herceptin is the important one.” WTF ARE YOU TALKING ABOUT RIGHT NOW??? I’M DOING CHEMO AND IT’S NOT IMPORTANT?? I nearly had an aneurysm.  

Well reducing the chemo by 10% wasn’t enough for me. What else could I do??

So of course I started to research ways to prevent neuropathy. I found out a couple of things.

Thing One:

“A small study” in October 2017 that was published in the Journal of Cancer Institute showed that treating with extreme cold can prevent neuropathy. (This is referred to as cryotherapy.) In the study they used frozen gloves and socks. So I thought – I can do that!! Small study be damned. Of course mine melted in the cooler bag… so I got ice out of the machine in the chemo suite and put it in a couple of ziplock bags. Yep. Ice. So now when I go in for my chemo, not only do I chew on ice (to prevent mouth sores) but I put bags of ice on my hands and feet. It’s really pleasant. 

ice
The second week one of my ice treatment experiment, one of the nurses gave me chemo transport bags that have a handy sleeve in the side. I could just slide the bag over my sock! No more sticking my feet in my cooler bag…

The premise is that the ice tightens up the blood vessels in the hands and feet – making them so small that the chemo won’t go in them. Makes sense to me.

Of course my nurses have NEVER had anyone do this. NEVER. Ok, the study was in October 2017. And it was one study. But don’t oncologists get briefed on new research?? ACK! I get that the treatment is important … and so it makes sense that it is the focus of the Oncologists and nurses. But why can’t we also work on mitigating the side effects?? Do they not realize how incredibly CRAPPY it is to go through chemo?? 

Anyway. Rant over. 

Thing Two:

The next thing I did was research what can PROTECT nerve endings. Here was the response to an early hit on Google “It is thought that vitamin B6 can aid in reducing neuropathy by maintaining the covering on nerve endings.” Well now. That’s news! So I started to read about Vitamin B-6. Turns out that there are not a whole lot of foods with B-6 in it … and taking supplements makes the medical community flinch since too much B-6 would be BAD. So I’m working on getting my daily dosage through:

  • sunflower seeds
  • prune juice (we all know what that will also help with! … but OMG the taste!!)
  • salmon (wild is VERY high in B6)
  • avacado
  • oatmeal
  • banana 

I’m getting tired of these foods. Just sayin’

What have I noticed?

Since I’ve been packing my extremities in ice and eating a handful of B-6 laden foods my neuropathy has almost completely disappeared. Of course, my chemo has been reduced by 10%, so it could be because of that entirely. But I’m going to do everything I can to prevent it. I need to be ready to walk on May 6th. (shameless plug … )

hospice pic

Walk with Jan

We all have things that we aspire to do when we have time. Something that I’ve always wanted to do is to get involved with Hospice in some way – ideally as a volunteer. Going through this crappy cancer journey has reminded me of this goal, since one of the goals of Hospice is to help people who are dealing with a life threatening illness live their lives to the fullest. I’m doing that right now, although I don’t needs the services of Hospice – hallelujah x 1 million.   

The Organization

If you don’t know about what Hospice is, you’re not alone. A lot of people have no idea that this incredible organization exists, or if they do, they don’t really understand its purpose.

Generally speaking, when someone is dealing with a life threatening or terminal illness they need support. The family needs support. Hospice provides it. As people reach the end of their lives and are in palliative care, Hospice is invaluable.

Currently Hospice Peterborough is building a new facility on London street. It’s a huge endeavour. Here’s a quote from their website:

“The new London Street building will provide a welcoming, accessible space for Hospice Peterborough’s home support program, day program, caregiver support, grief programs, family support, wellness programming and administrative offices. The scope of Hospice is also expanding to include 10 private bedrooms, offering another choice for end of life care in the community and the first hospice care beds to exist in the City and County of Peterborough. This will complete Hospice’s transition to become a central hub for the delivery of hospice palliative care and grief support in our community.”

Drawing
looking straight at the entrance
Building is underway!

The Pitch

So I’d like to ask a favour. Will you walk with me on May 6th to raise money for Hospice? It’s the day before my 53rd birthday. It would be the best birthday present ever! I will be in recovery from the chemo (although still having other regular non-chemo treatments) and I should be good to walk the suggested route (or most of it).

The Options

No walking – but can donate! Perfect. You likely live too far away, have small children or are too lazy. Haha!

You can donate by pledging to me that you will give me cash. Just let me know how much you can donate in a comment on this page, on Facie, by text or email, phone me, Insta, come over … OMG. Just let me know how much … then I’ll come after you!

OR…. 

You can donate by going to my team page on the Hike for Hospice website and clicking on “Donate”. There you’ll find a little ditty that I wrote. After you read it, you can donate something by clicking on the blue button. Easy peasy. (Or you could go to the Hike for Hospice website and search for my team, but that’s unnecessary.) 

OR…. Walk with me! Outta site!!! Now that would be so much fun …

Just go to my team page and rather than “donate”, click on “join team”. From there you choose the type of participant you want to be. You can just walk, add a donation, or you can set your own fundraising goal and then harass persuade some of your friends to give YOU money for Hospice. This way you can compete with me to see who can raise more money. (I am very competitive, just sayin’.) If you want to do that, just set a goal for fundraising, and make your own donation (I didn’t do this the first time and it took AGES to figure out how to donate, not just set a fundraising goal…)

The Final Comment

I don’t generally like to hit people up for money, but come on. I have cancer, it’s (going to be) my birthday, and Hospice is awesome. Please walk with me and / or make a small donation to a great organization!! 

xoxoxo J

bald head thank you
My bald head thanks you. And all of the other parts of my body do too, but my bald head is the most thankful for sure.
shorn

Stepping Out

Today was a big day for me. I untoqued / unwigged my shorn head. That’s right – I went commando. In public. And I survived it. And people were not staring at me. I got one sympathetic / helpful gesture, but that was ok. It was all ok. Hospital, Canadian Tire, Health Food store, Grocery Store. My shorn head went on tour. 

It’s interesting to me that the side effect from the chemo that causes me NO physical discomfort (compared to the various other inhumanities) is the one that causes the most psychological discomfort. In my mind it is no big deal to lose my hair. I can rationalize it. “It’s only hair!” “It will grow back!” Ya, WHATEVER, losing your hair SUCKS. There is a LOT of your sense of style in your hair. A lot of vanity. Hair is important in our culture. You can’t deny it. Otherwise, why would we pay to have it coloured and trimmed every 6 – 8 weeks? We LOVE our hair, and when it falls out, it is WEIRD. It is not the norm for women. And everyone knows it. So it’s very easy to feel insecure about having a shaved head. 

Last summer my hair was pretty long for me … and I liked being able to wear it up, let it go a bit curly, or braid it. It was lots of fun, actually. When I found out that I would lose it, I opted to cut it short … so that it would be less painful when it all fell out. I still think that was a good move. 

over timeI had my head shaved last week, on week 9 of chemo. (My hair actually lasted a LONG time!) I had it shaved since it was looking a bit Donald Trumpish. It really did look pretty horrible – my scalp was very visible and the remaining hair was wispy and elfin. I could stand it up and look like a troll. (kind of fun…) And my wigs would just float around on top of my head. (very irritating) So I went with the kids to Jenny’s shop in Lakefield and we all had haircuts. 

family hair cut session
My head looks exceptionally round in this photo. Judgy judgy…

Jenny took it down to 1/4″ … and wrote a message in the back for me. (I don’t have a photo of that just yet. I’m behind in the photography dept since I feel a wee bit crappy at this stage in the game …)

cutting it off
It turns out that lots of emotions are wrapped up in your hair.

There’s not a not of hair there, and it’s still falling out – so it’s not exactly a buzz cut … more like a fuzz cut. In my mind it’s what a baby eagle looks like, but I really don’t know. It’s just a vision that’s more appealing than the Donald’s head. 

So ya, I have a shorn head. It feels pretty nice – kinda like having no breasts. Convenient. Just not very normal. Not very feminine. 

WHATEVER!!

I plan to show my shorn head with pride, whenever I feel like it. And I’ll wear my wigs whenever I feel like that. I just need to practice not giving a shit.