What is chemo anyways?
When my oncologist told me that chemo was inevitable...I can't honestly say in that moment I felt anything. I didn't even know what that meant. By the time I was actually able to process it, I had this vision in my head of permanently hugging that white porcelain with a bald head. I imagined I would probably just sleep there because I thought that's all I would be doing. The only knowledge I had of chemo was whatever I saw on TV and most recently that was Walter White (Breaking Bad) puking his brains out nonstop. I will tell you this was not the case for me and for most people it is not. I also could not get past the idea that I was, no doubt, going to lose my hair. I imagined going out in public and everyone would just know I was sick because, lets face it, when you see a bald women - its the immediate assumption she has cancer. I didn't want that but I didn't have a choice. This was something I had to do and so I continued to follow the path that my doctors would lead me through.
When I sat in that first appointment with my oncologist and we discussed chemo, she also informed me that I would need to have a port catheter so that my infusions would be much less painful and much easier for me and the nurses. In that moment, it registered to me. I have to have a surgery and be put under anesthesia. To most that may seem like nothing. To me, in that moment, it was like fireballs being thrown at me and I couldn't avoid any of them. Watch out you have CANCER! Watch out here comes CHEMO! Watch out YOUR GONNA BE BALD! Watch out here comes SURGERY! Watch out YOUR GONNA HAVE TO HAVE YOUR BOOBS CUT OFF! It was nonstop. I didn't want to hear anymore. I have never been put under before and I received a call the next day that my surgery was scheduled in 3 days. I didn't have time to think about what the hell was going on. Honestly, I didn't have time to think about anything that had happened in those first few weeks.
Monday came along and my port was placed. Surgery was quick and easy and I woke up. I was scared I wouldn't wake up for some reason. In pre-op my husband asked me what would happen if I didn't wake up. My response was "I guess Ill be in heaven". He replied with "that doesn't sound so bad does it". Weird to have that conversation but...it was true. With regards to the actual port itself...it was weird. I am thin and hated that you could see this round quarter sized lump in my chest at all times. My healing wasn't as simple as I have read most peoples have been. I am only saying that because I had a lot of soreness for a good 2 weeks. I couldn't sleep on my side for a long time because I could actually feel my bones (or something) pushing on the port. With that being said...having that port was worth it. The first time I had a needle put in my vein after I actually started chemo...OUCH!!!!!!! It made me extremely happy that I had that damn port and didn't have to have a needle put in my vein every time I had an infusion. So, if you have the option, I suggest you opt for the port.
Thursday after my port was put in I had "chemo class". My husband and I both went and it was basically an overview of the type of chemo I would be getting, what to do when you have certain side effects, when to call the doctor, the purposes of each chemo, and an overall explanation of what to expect. I remember my nurse practitioner looking at me and telling me I still had this look of shock of my face. She asked if I was ok. I am not even sure words came out of my mouth. I think I just shook my head with a "half yes" nod. Fact was, I was not okay. I mean, your sitting there reading pamphlets about fevers, diarrhea, constipation, nausea, throwing up, fatigue, hair loss, and a million other side effects you might have along the way. Not to mention, I was given a laundry list of items I would need to purchase to cope with every one of these side effects should I have them. The idea was to have everything on hand if something were to happen. My nightstand quickly became a mini Walgreens Pharmacy. I am not kidding when I say that. Not only did I own one of every OTC medicine known to man, I owned pain killers, anti nausea meds, anti anxiety meds, and what seemed like a lifetime supply of vitamins. All necessary to cope with whatever was about to happen to me.
So what is chemo anyways? I am not sure even after my chemo class, that I knew the answer to that question. I had no idea what to expect but in 5 days I was about to find out. My first infusion would be on Monday. Driving to that appointment, I cried. I was scared. I was also ready to get this damn show on the road. 3 weeks had passed since my diagnosis and all I could imagine in those 3 weeks was this cancer just growing and growing. I had MRI's and PetScans which proved otherwise but I just wanted to get the ball rolling and kill this shit. I packed my chemo bag with snacks, my ipad, a book, and we had brought a movie to watch. All things I was told to bring to occupy the 5 hours I would be there.
My appointment started off with a short 20 minutes with my nurse and oncologist. My onc would feel my tumor in that appointment for the first time and this would happen at the beginning of every appointment for her to determine if chemo was working. She would then walk me back to the chemo room and this was the only time she ever walked me back. It was as if she was holding my hand, guiding me in to hell. I do love my oncologist. She is amazing and I am so happy that I fell in to her hands of care....I don't want it to sound otherwise but I know she had to of known how scared I was in those moments before my first infusion. She introduced me to my nurse. Erin was new at the time and I remember her saying we were going to learn how to get me through this together. She said that to us, and I immediately knew she was the best nurse for me. I didn't feel like I was just some patient she was sticking with needles...I just really felt like she cared to actually be my friend through this hell. She talked me through everything, occupied my brain with random talk when it needed to be and always explained whatever it was she was doing. We would start with premeds of anti nausea, steroids, I think Bendryl and in no time...there came the bags. BIOHAZARD!!!CAUTION!!! Then I would watch as that poison slowly dripped from the bag to that little tube, all the way down until it made its way to my port and in to my veins.
My first 4 infusions would be Adriamycin and Cytoxan. Adriamycin - otherwise known as the "red devil" or the "acid of chemo". In fact, my nurse had to push this specific chemo through these 2 large tubes, by hand, basically dressed as if I was in quarantine. This specific chemo can eat away at your flesh if it makes contact...Sounds fun right? I was told this was the drug that would cause most of the side effects I would experience. I was given freeze pops to suck on while this was infused which would help with mouth sores. For some reason, I was more scared of mouth sores than any other side effect. Thankfully, I never experienced this side effect through out the entire 4 months I would go through chemo. However, I was warned about the "red devil" and how my pee would turn red from it, and it did, and I could smell the chemicals when I would during my infusions. But there I was...in my comfy clothes, walking around the treatment room with my infusion pole, pushing it along as I went to the bathroom and the chemo still dripping away.
So what was the first infusion like? Thankfully, pretty uneventful. Typically, there isn's much that goes on in that 5 hours. I guess I thought I would feel something...I felt nothing. I didn't immediately feel any sort of side effects either, other than from the steroids which made me want to run a marathon. Expect to hear a lot of beeping from the machines of patients waiting to have their meds switched up. Expect to pee A LOT. I suggest you eat a good meal on the day of infusion because you might not have much of an appetite in the coming days. Remember, everyone is different. As a matter of fact, the day I got back from my first infusion, I went for a 45 minute walk. It was my attempt to stay as active as I could through out chemo and since I was all jacked up on steroids...I took advantage of it.
I will talk about the side effects I experienced in a future post because I did not have as many side effects my first time around. In fact, the 2 weeks between my first and second infusion I thought to myself...I totally got this. That was easy compared to everything I was threatened with in chemo class!!!
Here is my advice to anyone currently going through chemo or who is about to start. These are things that were recommended by my doctor so, of course, please check with your doctor before you start taking any medications or vitamins. Some doctors don't want their patients taking anything and it would be nice if there was some sort of universal rule for that but there isn't. My doctor was one that encouraged vitamins and various other proactive treatments to avoid unwanted side effects - like mouth sores, nail damage, neuropathy, etc...
***SO IMPORTANT*** DRINK WATER!!!! I started drinking about 5 bottles of water the day before infusion and the day of infusion, I was constantly refilling my cup. This is what flushes all the crap out. I read this on someone elses blog and I will say there was one treatment when I did not do this and there was a huge difference in how I felt afterwards.
* Rinse with biotin 2x a day and brushed teeth with biotin daily
* Take anti nausea meds every 4-6 hours. Do not wait for nausea to come. Its much easier to manage if you stay ahead of it and for the first 5 days, I would take these meds by the hour
*If you are receiving Nuelasta shots for your white blood cell boost, take aleve or something similar the morning of and Clariton or Zyrtec. This helps cope with some of the bone pain you might experience.
* SLEEP SLEEP and then SLEEP some more. Don't feel guilty about this
* Eat what you can and don't focus too much on some sort of crazy diet. Yes, eat healthy, but if that's not what's putting food in your mouth then eat whatever is going down and whatever is staying there.
* I took B6, Vitamin D, and Acidopholis daily as recommended by my doctor
*Don't eat super hot foods - you don't want to burn your mouth and give yourself a mouth sore and try not to eat potato chips or crispy things that can cut in to your gums - I stayed away from Chips and Salsa for 4 months and I was always careful when I chewed on something that could potentially cut my gums.
*Allow yourself to allow OTHERS to take care of you. This is your time to get healthy and only focus on yourself
* REACH OUT TO OTHER WOMEN WHO HAVE BEEN THROUGH WHAT YOU ARE GOING THROUGH!!! I wish I would have done this because I know it would have avoided that feeling of being alone. No one can possibly understand the fatigue, the nausea, or the emotions you are going through unless they have experienced it. Go to support groups, email me, if you don't have a nurse navigator see if one can be offered to you.
Again, this first round I did not have a ton of side effects but I will get in to that portion of my chemo in next weeks post. I am not sure I can tell you to walk in to that first chemo and not be scared. That's impossible. Its the unknown. We are all different and there is no way to predict how any of this will effect us individually. I would just try and imagine it as it being the beginning of the end to your cancer. It's the only thing that is going to kill that crap and get you back to being healthy again. I fear ever having to go through that again because it is not a walk in the park. It's doable but challenging. Trust your doctors, trust your nurses, let your family and friends in, allow yourself to be vulnerable, cry whenever you want, and know that you will get through this.