Radiation Tips, Tricks, & Tools!

SO I’M DONE! And as such, I thought it might be helpful (maybe?) to post a few things I learned along the radiation brick road.

First of all, expect the worst. I don’t mean this in a pessimistic way – hear me out. Everybody told me, “Oh, it’s so easy! It’s a walk in the park compared to chemo!” Dude, that was NOT the case for me. With chemo, it was a week and a half bad, a week and a half good. The alternation made it easier for me to take – there was always a quickly approaching light at the end of the tunnel. With radiation, it was a six-week, cumulative slog, and it SUCKED. Now, radiation for YOU may very well be like it was for the people who told me it would be easy-peasy. But I’m just trying to prepare you better than they did me – it might not be. Still, it WILL end and you WILL survive it!

Now, onto my favorite part: shopping! Here are some items that helped me and I think might also help you! I think I might also make a video of these for those who pick things up better that way.

1. Boiron First Aid Calendula Cream – Okay so this was my biggest, biggest error. The nurse told me to use calendula cream, so I went on Amazon and searched for calendula cream and went by the nicest, most expensive ones with the highest star ratings. I also watched a widely circulated video where the narrator repeatedly advises women undergoing radiation treatments NOT to use any alcohol or alcohol-based products on their treated skin, and the first ingredient in this cream is alcohol. IGNORE HER! IGNORE RATINGS! This is the cream your nurse was recommending – it is just called Calendula Cream and it’s good! It’s non-greasy and it works. I could have saved myself a lot of pain and suffering if I had just bought this stuff to start with. You will use this and/or Miaderm 3 or more times a day. I did this morning after shower, afternoon after treatment, and evening before bed.
2. Miaderm Radiation Relief – After I started experiencing skin breakdown, I got desperate and began googling for the best possible radiation skin treatments, and this cream came up again and again, so I bought some. After I started using this in conjunction with the cream mentioned above and the compresses I will discuss later, I took my skin from open, raw, and bordering on moist desquamation to completely healed and just pink in a matter of a week IN THE MIDDLE OF TREATMENT. When I mentioned to my technician that I was using it she said at her previous job, which was at a very well-respected breast cancer radiation center, Miaderm is the ONLY thing they recommended to their clients. It’s expensive and there is a reason, trust me.
3. Carrasyn Gel Wound Dressing – I will explain how to use this below, but be sure to ask first if your doc has some they can give you – I got mine for free.
4. Aquaphor Healing Ointment – Exact same info as #3.
5. Telfa Non-Adherent Bandages – This will go with #s 3 & 4, and it will kind of be up to you what size you’ll want (I’ll explain below).
6. CarraDres Clear Hydrogel Sheets – This is an expensive product, and one you will probably only get value out of if your skin breaks down and you’re in bad pain (as I was), so I’d wait on purchasing this. You might also be able to get a few free ones out of your doc. However, it was invaluable to be when my skin did break down. You could also try a less expensive but comparable product, like the ones made by Medela.
7. Avocado Oil – Great if your skin gets very dry (again, as mine did). Obviously it’s an oil, so be prepared for it to get on your clothes. (And remember, if it does, some Dawn dish liquid on oil stains prewash will take them right out.)
8. Prescription saline wash – Obviously you can’t get this on Amazon, so ask your provider – they were able to give it to me free. You keep it in the fridge (it’s non-perishable, but that helps keep it cool and soothing) and put it on a washcloth, which you then use as a compress on raw or broken skin. Made a big difference for me – I did it at night before bed.

All right, so again – my biggest error was getting the wrong damned cream for my radiation rash. I highly recommend the two listed above – if you use them early and often, you may never even need this other stuff. BUT IF YOU DO…

The nurse told me fairly early on about using #s 3, 4, & 5 together, but I tried it during the day. The idea is you take a Telfa bandage (she gave me a few long ones, but I used both long and short and kinda preferred the shorter ones) and put a line each of the aloe wound dressing and Aquaphor healing ointment down the center. You then slap it over the problem area and smush it down and there it stays. Except it doesn’t. It slides around all over the place, so using it during the day was both messy (Aquaphor, as the word “ointment” suggests, is greasy) and inefficient. I then discovered using it as a night dressing and it changed my world. My skin healed so quickly and so well my techs and I literally could not believe it. Typically when your skin opens in the midst of radiation they really don’t expect it to get better until well after you’ve finished, but between these compresses and the Miaderm, I finished radiation with fully closed skin.

The CarraDres pads are a similar idea but less messy, so better for daytime use. However, they also do not adhere well and will not adhere at all to lotioned skin, so be prepared to tuck one into your bra and adjust it constantly.

Avocado oil was what my doc pushed for dry skin caused by radiation. I did apply it fairly often, especially when my skin was at its worst, but did not prefer it because it stains. It can be gotten fairly easily and cheaply, however, so that is a bonus!

I also lived on Advil during the time my skin was open, and even took a few leftover prescription painkillers when it got tough to sleep because of the pain.

That about does it! If you have any questions, or if you want to endorse a product that worked especially well for you, feel free to comment below!

Radiation Burns & Bad Days

So, on Wednesday I met with my radiation oncologist. She told me that this coming Wednesday, they will be reducing the radiation field so that it is focused just on the cavity where the lesion was removed. I asked, “So my armpit will get a break and begin to have a chance to heal?” She told me yes, and I nearly jumped up and did a dance. You see, this is what my armpit looks like.

The very red area in the middle right is where my lymphadenectomy scar is. In the previous photo I posted, it was quite red. After that, it began to blister, and eventually opened. The dark skin all around is dead skin that has been fried by radiation. You can see where it, too, is beginning to peel. The skin underneath is new skin and very raw. Discontinuing radiation in this area was extremely important to me as the area hurts 24 hours a day, makes it very difficult to do normal, everyday tasks, and is also interfering with my sleep. More radiation there means frying that new skin, developing more blisters, and having the possibly of moist desquamation – that is, a blister that opens and instead of revealing dry new skin underneath, reveals moist, undeveloped skin, which can be a gateway for bacteria and infection.

So on Wednesday, when I got the news that I only had three more radiations to that area, I came home on a cloud. Sadly, yesterday the techs did the X-rays to determine what area the last seven treatments would cover, and the open, painful area falls just inside the border. So instead of only two more weeks of pain and skin deterioration in that area, I am facing another month of it.

As a result, I cried. I cried on the table and then I cried again in the changing room. I cried last night and then I cried again today. I think I am done crying now and can just face this and soldier on, but boy am I tired of pain and sleepless nights. Essentially the area hurts so much that when I roll over in my sleep, the pain wakes me. So I will talk to my doctor about that when I see her next week.

I really try to stay positive and upbeat and not let the little things get the best of me, but this has been the longest eight months of my life. Later I will post a photo of my naked chest so that the difference between the radiated side and the non-radiated side is visible, because it’s actually both interesting and shocking. Frankly if someone goes through all this and then the cancer comes back, that is just the ultimate insult. That should be against the laws of nature. Me getting cancer, eh, you could say it’s not fair, but I’d say that’s debatable. Someone doing all this and then having the cancer come back? THAT’S unfair.

Anyhow, in conclusion, to quote Bart Simpson, I didn’t think it was physically possible, but this both sucks and blows.

A pause for thought

Yesterday, Dr. Morris told me that my skin looks great for this point in my treatment. That really put a smile on my face and made me feel better. Plus, I’m over halfway done now!

One absurd thing is the port incision on my chest keeps opening a tiny bit and weeping and I finally realized it’s happening when I am not wearing a bra because the weight of my left breast is pulling the incision open. Problem? Radiation oncology told me to avoid wearing a bra as often as possible to minimize friction and maximize airflow. So basically I need a half a bra. I can’t just cut a cup out either because I need to not have anything in my armpit either. Crazy.

Also, came across this video in my newsfeed this morning. Take a minute to watch it all the way through – it’s brief but carries an important message, and one I will try to apply to my life.

Tony Robbins – What Makes Charismatic People Attractive?

Happy Wednesday!

Radiation 18/35

Not such a good day.

The radiation is really starting to take its toll on my skin. My right nipple is significantly darker than my left, and my entire breast feels heavy. I am developing a red, spotty rash from above my nipple to into my armpit. Meanwhile, I have vitiligo in my armpit, so the radiation has made it very red and tender, like a sunburn. Unlike a sunburn, the redness and soreness do not go away. In fact, I learned from my tech today that my skin woes are really only just starting – they will get worse, and continue to worsen even after I am through with radiation (June 9). So essentially I am looking at my skin darkening, burning, and possibly (likely) blistering and opening before this is all over, which really won’t be until the end of June.

I am tired. Not fatigue-tired, thankfully – that hasn’t hit me yet, though I am sure it will. I am mentally tired. I am tired of fighting this enemy that I can’t see or feel. I am tired of waging war on my own body to combat something that may or may not even be there. It has been 7 long months since my first surgery, and I have mostly stayed positive, but today, as I lay on the table, holding those fucking pegs, I thought to myself, “What if I just died? If something killed me, then I wouldn’t have to do this anymore.” I don’t mean suicidal, though I have been there – I mean just, I don’t want to do this anymore. I don’t want to face one more day of self-harm for a result I may or may not see. And my friend, her mother went through all this shit – surgery, chemo, radiation – and guess what? She just had a tumor removed from her spine. Metastasis. So is this worth it? I really don’t know.

I want to quit. Just say, fuck this, I have done enough, been through enough. There is only so much the human mind, spirit, and body can handle, and I am at my limit. When you start to think death is a preferable alternative, I think it’s safe to say you’ve used up your reserves and are pretty much at the end of your rope.

But then I talk to my breast surgeon, who tells me he doesn’t ever think I am going to deal with this cancer again. And I talk to my Mom, who offers words of sympathy and encouragement. And I talk to my husband, who makes me dinner and takes the kids up for their bath so I can write it out. And I talk to the ladies in my Facebook cancer group – some of whom have been through this and come out the other side, some of whom are facing it head on right now, just like me – and they offer words of camaraderie and praise. And I realize: this will be all right. I will be all right.

So yeah. Things suck today. But I’ll go back tomorrow, and every damned day until I’m done, and I’ll suffer and have bad days but in the end it will be behind me and if the cancer does come back, at least I know I can say I did everything I could.

Chocolate and tears

What do you do when, after loads of great news, you get a whole face full of shit?

You sit down and eat an entire chocolate bar, that’s what.

I went to see the radiation and medical oncologists today. I have been dreading it because I knew I didn’t want radiation or endocrine therapy (Tamoxifen) and I knew they would tell me that’s what I had to do. I was not disappointed in my expectations.

I can’t even get into all the stats and details because frankly my head is swimming and so were my eyes. Radiation takes your chances of relapse from 30% down to 3%, or something like that. So I grudgingly agreed. I go in on 12/14 to get prepped and tattooed (37 years without a fucking tattoo and now I have to get one and it’s not even a black cat). I’ll be starting off my new year with radiation, so so far, 2016 is not looking much better for me than 2015.

Then off to the medical oncologist for more devastating news: chemo is not actually out of the question, and no matter what, they strongly recommend I do the endocrine therapy. As previously mentioned, this is five years of medication that stops your breasts from receiving estrogen and basically gives you five glorious years of menopause like symptoms. Given that I am 37, that means essentially I’d have five years of menopause before going into actual menopause. Additionally, Julian and I have been seriously discussing trying for a third and final baby, starting the process this summer, and you should not (and by should not I mean cannot for health and safety reasons) get pregnant and/or nurse on Tamoxifen. He started talking to us about seeing a fertility expert, harvesting eggs, etc, and I just got SO fucking angry. First of all because I hate the fact that it’s a foregone conclusion that they recommend Tamoxifen so therefore I will take Tamoxifen and it doesn’t matter what else I have planned in my life or what I want to do. Second, I hated being told that by a man because what the hell does he know? Has he been through menopause? Has he had breast cancer? Has HE taken five years of Tamoxifen?

Finally after years of feeling like I can do most anything adequately but nothing excellently, I found out what I am really good at: being a mom. I love it, I enjoy it, I am confident in it, and I make awesome little people. And now that I am hitting my stride and ready for the final installment in our fantastic family, BAM. God says eff you, no more kids. Instead you get five years of hot flashes and possible uterine cancer, and guess what? You might still get breast cancer that goes systemic and kills you. HAHA GOOD ONE RIGHT?!?

I am sad and angry. I know I need to see some other doctors and get second opinions but right now I just want to say screw it and pretend like I never had cancer and do nothing. And if it happens again and kills me well at least I will have gotten to live what remains of my life in the way I want to, doing the things I want to do, instead of burning the hell out of my boobs and ingesting copious amounts of chemicals.

I just keep repeating again and again, “I am not taking that drug. I’m not. I won’t do it.” But I’m afraid too, that if the breast cancer returns I will blame myself like crazy.

We’ll be out of town next week so I guess I will use that sort of down time to research doctors and make appointments for second opinions before rushing ahead with anything. But this all sucks and really has me down.

And oh yeah, someone broke two windows on my car on Saturday so they could steal the kids’ diaper bag, which Araceli left in the car. Fuck you, 2015. No seriously. Fuck you.

One week post-op!

For those who haven’t been following along at home, the Making Strides fundraiser was a success, the lumpectomy was a success, and my charity Halloween party was a success. Pretty good news in a time that has been a little stressful, to say the least!

My pain is not too bad, although it flared up yesterday and today. I realized that I have been overdoing it, which I swore to myself I wouldn’t. I think I do indeed have a problem asking for help. The first two or three days after surgery I was okay with being taken care of, taking it easy, etc. But by days 3-4 I started doing more than I should simply to avoid asking Julian (or anyone else) to help me. I asked myself why this is, and I realized it’s because I am afraid people will think I am lazy, malingering, or taking advantage of their good nature. Even today I swore I wouldn’t pick the kids up or physically exert myself and I found myself doing both rather than asking for assistance. Besides not liking asking for help, I also just really don’t like sitting still! There’s always so much to do and never enough time to do it.

The scar in my armpit looks amazing. One of the steri strips has come off the breast scar and it looks literally like a scratch. I mean it’s almost invisible. I don’t dare to hope the whole thing will look that way, but WOW. After all my worrying.

Next week I have a s**tload of appointments – followup with breast surgeon, radiation oncologist, medical oncologist, cancer naturopathist. I am nervous but interested to hear what they all have to say! Julian is supportive in me not wanting to do either radiation or Tamoxifen, but we’re both keeping open minds with regards to professional opinions and recommendations, as well as statistics.

That’s about it!