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Before you start chemotherapy you will be given lots and lots of information. Your head will swim and you will feel overwhelmed from information overload. But no one can tell you what it's actually like to be a chemo patient, except another chemo patient. This coming Wednesday will be the half-way point of my treatment (YAY!). Here's what I've learned and experienced so far.
Premeds. So many premeds. You don't just get the chemo at your infusion appointments. You will receive probably at least four other medications. These are to mitigate side effects from the chemo (mostly to prevent nausea). Some of the meds are for side effects caused by the other premeds.
My premeds are: Aloxi, Emend, Pepcid, Decadron, Benadryl, and Ativan. The first five are for preventing effects from the chemo. The Ativan is because I am one of the lucky people who gets muscle spasms when given large doses of IV Benadryl. The muscle spasms are terribly uncomfortable. Plus, you look pretty crazy when going through them. I get this pressure in my joints and muscles and it builds and builds and BUILDS until I have to move. I can't ignore the need to move where ever the pressure feels like it is building because eventually it will jerk on its own. Honestly, for me, during the actual chemo sessions, this is the worst part because even with the Ativan it takes a couple minutes for this effect to subside.
If you have a port, like I do, you'll receive a Heparin flush just before they send you home each week. This is to make sure your port doesn't fit up with clotted blood. That would be bad.
My chemo is a total of 18 weeks divided into six 3-week cycles. The first week of each cycle I receive two chemo drugs, Taxol and Carboplatin. On those weeks, I receive all five premeds. On the other weeks I only receive the Taxol and I get all the premeds except the Emend. My doctor added the Emend at cycle two and it make such a huge difference!
The very first week I started treatment was just hell. I was nauseous and ached all over and just had absolutely no energy. This lasted for five days following my chemo infusion. I honestly thought I would go insane if things continued to be like that. I really could not picture enduring 17 more weeks of that. For anyone out there who is suffering like that throughout their treatments, I feel for you, I really do. I hope your doctor finds a way to make things better for you.
We don't have medical marijuana in GA, but, despite my inexperience with that particular substance, at the time, it was the only thing I could think of that could possibly make me feel any better. I am so happy the Emend works for me, so I don't have to go through trying to 1) find and purchase marijuana and 2) convince my husband that me breaking the law is okay in this particular circumstance. Seriously, government, get your stick out of your ass and make marijuana legal already!
Of course, after you've been loaded up with all those meds at your chemo appointment, you're not done! Oh, no. You also have home meds to take. At first I was taking Zofran and Dexamethasone twice a day for the three days following my chemo appointment. Now that my white blood cell count has dropped to below 1,500 I also get Neupogen/Granix injections on those days as well.
I also have a script for Ambien because I've had severe insomnia, mostly due to the steroids (Decadron and Dexamethasone).
If you have to go on Neupogen, get some Claritin and some Aleve. Neupogen causes bone pain. Bone pain sucks. I don't know how the Claritin helps, but it does. (I get why the Aleve helps). Make sure the nurse who gives you the injection (or if you're injecting yourself) does so s-l-o-w-l-y. If you feel it burning or it feels super cold (you're going to feel the needle, sorry), tell the nurse so she can slow the injection even more. The nurse should then massage the area for 30-60 seconds.
Everything you receive the day of chemo will be administered via IV, either via your port or a PICC line or a regular IV line. The chemo itself will be hung in IV bags and one of those IV pumps will be set to administer it at a specific rate. Some of your premeds may be administered that way as well (the Emend and Decadron I receive are).
The rest will be "IV push" which means the nurse will inject directly into your IV line. All of your premeds should be pushed very slowly, especially the Benadryl. If they are not pushed slowly, you will be able to tell! Benadryl in particular will cause your throat and chest to burn and you will cough uncontrollably. If this happens to you, speak up! If your nurse doesn't listen to you, ask for a different nurse and tell her supervisor. You have the right to expect the nurses to do everything they can to make you as comfortable as possible during your chemotherapy.
Receiving chemo itself isn't really painful. Before I started chemotherapy, I imagined the chemo drugs were going to burn through my veins like alcohol on a fresh paper cut. Fortunately, you don't feel them at all. If you've ever had an IV of saline, it doesn't feel any different. Basically, when you go get chemo, you sit in a comfy chair hooked up to an IV for several hours (yes, you can get up to use the restroom--the nurse will either unhook you or you'll take the pump in with you), so it's really kind of boring.
My infusion center has individual private cubicles set up. Each one has a TV and your reclining chair. There are warm blankets and free beverages available. The meds they give you tend to make you sleepy, so most of us patients are just napping the time away. You can bring food with you to snack on and things to make the experience more comfortable for you in general.
I have a tote bag that I take each week. I have a sweater, a throw blanket, fuzzy socks, earbuds (so I can listen to Pandora on my phone), light reading material, and a needlework project in my bag. My appointments last from 3-4 hours, starting at 10:30 in the morning, so I do usually want lunch.
There's a cafe in the same building that has amazing chicken salad sandwiches, so I often send my hubby (or whomever has gone with me that week) to get me lunch from there and bring it to me. It's actually something I look forward to each week. Little things like that really help! Make an occasion out of your treatment in any way you can, so that it's not something you dread. We start the day out by getting a bagel at the shop across the street from the treatment center. Your treatment day will be the day your whole week centers around, so do anything you can do to make it feel special. Especially since the days afterwards might just suck monkey toe.
See, all those drugs will fuck you up. Your face will get puffy. Here's a pic of me the Sunday before I started chemo.
Here's a pic of me from yesterday (almost half way through my treatment).
My cheeks are fucking huge. I feel like a big melon head.
On top of that my face and my hairless scalp broke out in terrible acne. Super ugly, super deep, super painful acne. Do not let anyone pop pimples on your scalp. The pain is just not worth it. Trust me. The acne is now much improved. I started washing my face and head twice a day using anti-acne products. In the morning I use Garnier Clean + Purifying Cleanser for Combination Skin. At night I mostly used Neutrogena All-in-1 Acne Control Daily Scrub. I'd follow up the face wash with Clean & Clear Essentials Deep Cleaning Astringent. Then I'd put on Clean & Clear Advantage Acne Spot Treatment (salicylic acid). I also used a comodone extractor to clear out any clogged pores (white and black heads) that I could. There are a lot of different products out there. You may have to experiment to find what combination works best for you. Just know that you are NOT the only one dealing with chemo-acne!
You might get insomnia. Tell you doctor if you do so you can get some sleep meds because right now, you need all the sleep you can get.
Your muscles and joints will ache. Maybe sometimes, maybe all the damn time, but, especially when you are trying to just fucking fall asleep. Aleve helps, but what works even better for me is regular massage therapy, hot baths, and stretching.
I'll admit I'm not getting as much exercise as I should. I do try to walk when I can, but some days I'm just feeling week and it's all I can do to get up off the sofa to get a beverage or to visit the bathroom. If you feel up to exercising, do it! But be careful of overdoing it. It's far easier to overdo it that you think. I've been on the verge of collapse just from doing a regular week's grocery shop. That's just the way it is, unfortunately. There will be days when you feel more exhausted that you've ever been in your life, except you haven't done anything to cause the exhaustion. Some days you'll feel normal mostly normal, but then you get fatigued faster and easier than you expect to and you're reminded that, nope, still have cancer. Every now and then you'll have a rare day where you are able to be the "old" you again. Treasure those days. Chances are they'll be few and far between. And you'll probably spend the next three days recovering. But it's worth it!
You will get "chemo-brain." Short-term memory lapses. Harder time recalling things you know you know. Stuttering/difficulty pronouncing words and general difficulty talking, especially when you are tired. Brain fog. Can't brain, have the dumb. It will happen. It is frustrating. It is embarrassing. I've been assured it will go away. God I hope so! I am used to my brain being my friend. It's a good thing I'm on leave from nursing classes, because not only do I not have the physical stamina to do clinical hours, I don't have the thinking power to do the coursework right now. Writing this blog helps because it forces me to think and write and use my brain, but it's not as easy as it was before.
No one who hasn't been through this understands what it is really like. Chances are the nurses at your infusion center are awesome and caring, but, even though they've cared for hundreds of patients, even they don't know what it's really like. If you're going through chemo and would like to share your experiences, please comment!
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