Radiation is Not Like Lying In a Tanning Bed (& Other Musings)

                                                 Do you guys think this should be my first post-chemo haircut? ;)

I'm 6 weeks post surgery. My scars are all healed up "nicely" (although, they aren't really nice... let's be honest here).

I had a good run the last few weeks. I'd been sleeping regular hours again and that alone has begun to erase the John Mayer-esque eyes I developed during chemo. I started dreaming about going back to work, having normal dates with Jeff that didn't involve hospitals (it started to feel like all of our days off together were filled with appointments), conversations with friends that were light hearted and had more to do with long term plans and goals and less to do with cancer. I started letting myself feel 24 again.

I'm 100% sure that baby snuggles, cute dogs, learning new skills (like making sushi!), and being silly with friends is the true meaning of life.

I even made the leap to start introducing exercise back in to my life at about the 3 week post-surgery mark. I went out and bought a Fitbit. I knew it was time when in the middle of the night, my legs were so restless I felt like I needed to go for a run around the block. It's in those moments I realized that I just spent the last 6 months in my bed. I am sure, one of these days, I will write you a full review on the pros and cons of my Fitbit but for now I'll say this: if you are competitive, you will be motivated by this device. I strapped it on my first day and saw I was walking, on average, 2000 steps (the recommended daily is 10 000). So, next thing I knew, I was waking up earlier, taking the long way to get a coffee in the morning, and going on the treadmill with my book to get those extra steps in.

With this new-found energy I'm trying to check some things off my list. Being kind to my body is my #1 priority right now. It needs some TLC. I have been trying to walk for a half hour on the treadmill, then jog/walk in intervals for a half hour. I got the OK from my doctor to do any sort of lower-body exercising. I feel my muscles loosening up a bit again. I have always despised exercising, but recently it had become a part of my day that is so peaceful. I know I get a full hour dedicated to reading my book and listening to my music. The best part? My gym is so quiet. As in, no one is ever using it. I don't wear my wig or pencil in my eyebrows and no one sees me. It is the ideal situation.

I'm unsure if it's related, but as soon as I introduced exercise into my diet, my hot flashes nearly disappeared. Now, this is likely because I am two months post chemo (!) and I was told this was when they would wear off, but it seems too coincidental.

Back when I still had no eyebrows. They have been growing in like CRAZY the last few weeks though. I am going to have to get them threaded ASAP.

My baby hair is so soft, I can't stop running my fingers through it. I actually need to wash it with shampoo now. It seems to be going curly in the back! I'm excited at the prospect of being able to part it again and hoping that will come at the 12 week mark. I feel increasingly frustrated with my wig: while I felt comfortable in it throughout treatment, I just don't want to wear it anymore. 

Taken today! 11 weeks post chemo. 

Last week I met with my radiation oncologist to prepare for radiation,  the next stage in my treatment. The original size of my tumor, how close it was to my skin, and that is was aggressive and had spread to my lymph nodes all played a factor in my upcoming treatment plan.

I went for a CT sim at the hospital where they made a mold of my chest, and I got my radiation tattoos. How badass. They are the size of a freckle and ensure your radiation technologists can line you up easily.

I will be receiving 5 weeks of radiation (every. single. day.) from Monday-Friday, a whopping total of 25 sessions. Radiation has to be given in small doses, until you reach the end: this is when you are considered having received a "full dosage". Your body still processes the radiation in the 2 weeks afterwards. This is typically when you see the worst of your side effects.

Last summer, I fell asleep on Westboro beach for nearly 3 hours. I woke up to the most horrendous burn. It blistered and bubbled and I couldn't wear pants or bend over for weeks. I have a hilariously vivid memory of making Jeff rub me down with aloe and moisturizer while violently shaking and crying from the pain. I had just started my job at Chapters where I would go to the bathroom and peel off layers of my skin so I didn't offend customers. It was a real 10/10.

That is the worst burn I have ever experienced (and yes, I am well-versed on the damages the suns rays can have and trust me, I have integrated a high SPF into my daily foundation and don't plan on sitting in the sun without sun screen this summer. No more sun burns for this girl!). I am going to remember how this full-body burn felt and feel grateful I am only doing radiation in a few localized places, knowing it is better then the full body burn I had last year.

I am receiving radiation to the chest, shoulder, armpit and collar bone area. I actually found out the (disturbing) news that I actually have a cancerous lymph node in my chest that did not fully clear up post chemo. They aren't able to remove lymph nodes that are under the chest muscle and so close to the lungs, so the only option is for radiation. I was a bit concerned about this, but my radiation oncologist told me this is the point of the treatment and not to worry. So, I'm not going to worry. I trust that with 5 weeks we should be able to take care of it.

I started my first radiation session this last Tuesday. The times vary each day, but my sessions last about 15 minutes. As my mom and I have been going to radiation treatments together (weird, right?), they have been so kind and accommodating to ensure our treatment times coincide.

I guess I was picturing lying in an intensive tanning bed when it came to radiation. It is actually far from it (and significantly less relaxing). I'm on the 'Tomo' machine - we only have one of these in our hospitals in Ottawa - meaning I have to be treated at the General.  It's kind of like going for a cat scan. You lie down, lift your arms straight up, and a wax mold is placed on your chest and then you're strapped in. The sounds you hear aren't as loud as an MRI, but they definitely aren't soothing either. I felt the anxiety the first day... you are super constricted and have to lay completely still for a full 12 minutes. This is actually way harder then it sounds!

So I've been working on my meditating skills. I try and just zone out. I have only one other memory of a time when I zoned myself completely out of a situation and that's when I got the tattoo on my ribcage and my mom told me the faces I was making from the pain were similar to those you make when giving birth. I didn't want to be present for that either, so I have some practice with taking a deep breath and going to my happy place (mainly full of books, bright colours, water and beaches).

I'd spoken to a few of my pink sisters before I started radiation and asked them what to expect. Everyone was very adamant that it was easy-breezy compared to chemo. You can expect a fairly severe sunburn by the end, and some fatigue, but you will be fine.

I'm four sessions in, and I can't lie to you guys. I feel like absolute death.

I can even venture to say that the way I have been feeling for the past two weeks are equal or worse then most of my chemo sessions (mainly because I have been feeling sick for so long). 

Now, my original post blamed the radiation for this. With some digging, and seeing every doctor available to me (I have true appointment fatigue - most days this week I have had radiation and 1-2 other appointments with various doctors as well), I have been told that my side effects are 100% not from the radiation. It is localized, and you simply don't see these kinds of effects from the treatment.

I posted this picture on Instagram about two and a half weeks ago that made a few of you a bit nervous! No, I am not doing chemo again. I am, however, being administered a drug called Herceptin every 21 days and it is in the chemo "family". I go to the chemo ward where they use my port to give it to me. There are very minimal to no side effects for most people.

"Most people".

No side effects for...most people.

We've all determined that I've become extremely lucky this past year, so of course I would be the one to have extremely severe side effects to Herceptin.

My head hurts so badly it is making me extremely nauseous. It is compromising my sight at times. I feel like I may faint. My body is so sore. All those chemo-like side effects are back to haunt me. Only, during chemo they give you piles of drugs to help you through it. You don't get that with Herceptin.

I wasn't expecting that.

So, my normal 24 year old life has been put on hold as I take care of my poor, poor body. I keep telling her it will be over soon and in reality it has to go away soon. It's been two weeks! I've curled up in bed most afternoons this week and tried to sleep the pain away but it keeps creeping back every morning.

If I never have to have another IV again, I would be totally OK with that. 

I put my guard down and I find it has made it so much harder to be strong and persevere through the pain. I kept saying "Well, the worst is over!" after I recovered from surgery. Radiation - what a joke! Herceptin - I'll just make sure I have the afternoon free! 

Here's some real talk. When it comes to cancer, there isn't any "easy" part. Don't celebrate too early. It isn't over until the very last appointment for your very last treatment, and even then... is it ever truly over? The anxiety of having scans every few months to determine, is it back? I don't think life will be easy ever again after this.

The sweetest picture I found on Instagram. Jeff and I decided we need to print it out to keep.

I wish I had something else more positive or upbeat to talk about. I'm not (completely) miserable. I just wasn't prepared to fight the chemo battle ever again. I retired that warrior-like portion of my life (of myself). I was ready to go back to worrying about normal things, like what colour to paint my nails or what new TV show I should watch once I'm done Scandal, and what I was going to do this weekend. I have had such an overwhelming few months that I just wanted to coast for awhile. Life doesn't always respects your "wants" though, does it?

I was so discouraged at how sick I've been. Jeff looked at me the other day and said - get out of bed. Don't give up. You aren't dying. He said these things in the nicest way possible, and he was right. I (think) I have done a good job of coping through the last few months - and not just coping, but living while I'm at it. I had some dark moments, but for the most part I was genuinely happy. Yet, I have let this unexpected sickness pull the rug out from under me. I've been having some serious woe-is-me moments. 

I need to listen to my body. I know that I need to rest to heal, but I also need to make an effort to do the simple stuff. Like get out of my pajamas every once in awhile. Oh, and shower. That needs to be a priority. ;)

So I'm re-learning lessons I thought I had already dealt with. I have had so many people say to me "I don't know what I would do if I was you. You're so brave! I couldn't deal with all of that".

Here's my answer to that:

Yes, you can.

Yes, you would have.

Because when it's happening to you, you realize you have no other option. 

I'm not some superhuman who loves needles and copes extremely well with side effects. 

When it's your life, I can guarantee you find the strength buried deep inside you to cope with more then you ever thought possible.

So, when you are feeling overhwhelmed on the day-to-day: remember that. Don't wait for cancer to come along to find that bravery. 

Be bold before you have to be. 

I need to remember all that I've gone through and realize that if I can endure what I have the last 6 months, I can deal with anything.  

I can deal with the cruel woman who works for Great West Life and is giving me a hard time with my benefits recently

I can deal with my hair growing slowly on the top and longer on the sides so it looks like a mullet

I can deal with the fact that Olivia Pope may never end up with President Fitz on Scandal

I can deal with the headaches and stomachaches and fatigue and all of the rotten side effects that make me feel as if life isn't worth getting out of bed

I can deal with all of it because it's worth it. The end result: a happy, beautiful (not so) "normal" life after cancer will be worth it.

And with that, I'm off to enjoy the most beautiful weekend we've had in awhile (under a heavily shaded patio umbrella, hat and scarf).



PS - My friend Diana recently had a serious fall and has been in the hospital recovering. She has been a wonderful support to me during the last 6 months. I have experienced firsthand the power behind all of your positive energy and prayers, and I know she will come to good health in no time if we all stand behind her. Please include her in your thoughts tonight. xo
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