"Your head is so round!" and other nice things people say

I’m going to be honest, for a while I forgot that this blog even existed. It has been crazy and I’m not even entirely sure where I left off. I know that at least two months have passed since I just recently hit the two months out of chemo mark (Yes, very awesome, more on that in a bit). I’ll try and back it up but I’m sure it won’t do justice to life as it happened.

April and May were very blurry together with each other. I was in the second half of chemo treatments and everything was just a crappy haze for about two months. That chemo was much easier going than the first half was. I was getting Taxol treatments once every two weeks and things were just at a steady low. The nausea that hounded me with the A.C. treatments was gone, and replaced by just a minor nagging for a few days after treatment. By the second round, my oncologist had even found a good anti-nausea that wiped it all out. I remember going home after that treatment and just waiting for the familiar stomach pains to kick in and knock me on my butt for a few days, and they just never showed up. I ate seafood the day after treatment! Life was good and food was edible. Unfortunately, the insurance company decided to change policies on medication between that and my next treatment, and would no longer cover my awesome anti-nausea meds, so the final two were spent with some minor suffering.

The Taxol treatments were pretty benign compared to the A.C. treatments. Like I said, the nausea was almost completely gone, and I was able to recover from them within a week as opposed to two. The biggest issue I had with the Taxol was the fatigue. I was just constantly tired and doing anything besides just sleeping on the couch was physically exhausting. When I was feeling my best in these treatments, I was able to walk Rory about half a mile before I was just completely done for the day. Aside from the boredom of house arrest, the other issue with the fatigue was weight gain. Thanks to not being nauseated, and an extra hankerin’ for carbs thanks to the gosarelin injections, I managed to buck all societal expectations and actually gain weight while in chemo. When I finished in May, I was 10lbs heavier then when I started (not counting the boob fluid). Now, I’ve never considered myself a vein person, but there are only so many drastic changes a person can have happen before it starts to take a toll on their mental health.

My last chemo treatment was May 8^th, 2014. I was a complete alien compared to who I was just a year before. I don’t think younger me would have even identified chemo me as the same person. I was bald except a few scraggly short hairs scattered on my head, my skin was pale and sallow, and the usual dark circles under my eyes had been exacerbated to a point never seen before. My body was a mess of new scars and strange swollen sections. Being exhausted and stuck at home alone for over four months had mentally sunk me to a sad place. It was a very strange time for me. No matter how miserable things got, it was something that I knew I could get through and it would eventually be over. Well, I had made it to the end and everything just felt like shit. Everyone around me was almost euphoric, cheering the end of my treatments and talking about how excited I must be. Yes I was happy to be done but the price I had paid was incredibly high. The really dirty secret of chemo is that the longer it goes on, the worse it gets. Just one treatment is bad, and can negatively affect the body. The second treatment is just as bad, but your body isn’t as strong going into it since the first treatment has beaten it down. Each subsequent time just gets worse and worse until at the end, you’re just trying to hang on to whatever sanity you have left.

I remember talking to Dr. T about side effects of chemo and at one point she said that over 75% of women going through this chemo regimen end up on some kind of anti-depressant. I never ended up asking for meds, but I feel like I easily could have used some help to get through the end. I feel like I’ve kept my head high and fought hard to maintain a positive outlook on everything that’s happened since my diagnosis. Even with all of the crap going on with my mind and body, I was finally done and things were going to get better. I was also finally going to get my port taken out. While it is a medical miracle and I would 100% get it again if I had to do it all again, the little bugger is pretty annoying. It’s like a giant itch you can’t scratch. There would be times I would move around and it just felt like the port was trying to rip through the skin by my clavicle. Basically I was very excited to have it out.

Three weeks after my last chemo treatment, I had an appointment to check my blood counts and get approval to have my port taken out. I was still looking sick and feeling tired, but things were starting to get a little better. All the way through treatments my doctors had remarked on how fast I would recover from everything, which is always very encouraging. You can imagine my extreme disappointment when I was told my white and red blood cell counts were still in the danger zone, and I had to keep my port in at least another two weeks just in case something were to go wrong. I sadly accepted this fact, what was I really going to do at this point.

The next day was May 29^th, also known as my birthday. This was also my golden birthday (turning 29 on the 29^th) and it seemed like everyone I knew was just elated. “What a celebration!” “You must be so excited to be alive!” “You’re done with cancer, everything is awesome!” These sentiments were being tossed around by everyone and I finally cracked. Honestly, I feel terrible for Kris. He took me out for a beautiful breakfast and had very sweet things planned for me during the day. I was doing okay until about midday. I caught a look at my reflection in the mirror (something I had been actively avoiding for a few months now) and was basically horrified at what I saw. I was done with treatment and I wasn’t sick anymore, but I looked like a damn cancer patient. You know when you get a really bad cold for a few days and you see yourself bleary eyed and red nosed? Not very attractive. Now imagine that, but for four months and you have also shaved your head and it won’t grow back. Staying positive is one thing but spending almost half a year in this state will get to anyone eventually. I had finally had enough and spent a solid hour just crying in bed. As embarrassing as it is to admit to that, I think it’s important for people to know that it is hard, much harder than I had ever imagined.

Not to time travel too much here but, I was talking with Kris on our anniversary about the physical appearance thing. It had dawned on me that prior to surgery and chemo I had things completely backwards. Before surgery, I was so torn up over the idea of losing my breasts. I had always identified so much with my boobs, and I felt like a lot of who I am was wrapped up in them. I was terrified of what I would look like and how I would feel without my breasts. At the same time, I knew that chemo was a very strong possibility, and that losing my hair was most likely going to happen with that. I really didn’t care too much and just thought, “Oh well, I guess I’ll finally get to try out that pixie cut I’ve seen.” I had surgery, and once the drains were out I have had a problem with how my chest looks. Even when it was flat, it was just different. The spacers were placed really well, and I feel completely comfortable walking around without a shirt on again. Not having hair has proven very devastating. I hate being in public and feel like people are constantly staring at my weird bald head, even when I have on a hat or a wig. Don’t get me wrong, the wigs are fun and all, but they’re hot as hell and it’s just not the same as actually having hair. I am hyper aware of my head and it’s not fun. I don’t feel edgy or cool, I just feel exposed.

Jumping back a bit, June was a really good month for me. It started off with a delightful BBQ at my house. A bunch of my friends were able to come over for burgers, pasta salad, and tons of desserts. I had a crazy idea, and off handedly mentioned that we should have a cancer piñata that I can beat down at the party. Since I had free time, I made some papier-mâché boobs with a huge black blob on the side, and stuffed them full of candy! What I didn’t know was that my friends had commissioned a cancer cell piñata for the occasion. It was very cool and could actually go from one cell, and divide into two! In the most unbelievable thing to happen to me, my friend Leslie managed to get a recorded message from possibly the greatest radio DJ of all time, Jimmie Changa! There is a very impressive video of me on Facebook just freaking out as they play me the message. It was so incredibly awesome and an extreme testament to how incredible my friends are. If it weren’t for Kris, my family, his family, and my friends, there is no way I would have made it through these woods. So many people came together to help me, and it was very nice to have a party to in some small way say thank you. As long as I live, I will never be able to thank them enough.

Even though I wasn’t able to officially return to work, I was able to volunteer and be there for my kindergarteners’ graduation. It was so wonderful getting to see them again, but very hard trying to explain why I couldn’t have hugs or even high five them. I don’t know who was more excited to see who, me or them, but it was a very happy reunion. I realized that explaining to 6 year olds what cancer is can be very tricky, but they are supportive even if they don’t fully understand. It’s also very sad to see just how many people this disease touches. At least 5 of the kinders had a family member that had cancer in some form. It is heartbreaking to see someone so young having to live in that reality. Stupid world. The kiddos were just enamored with my strange fuzzy head. I never wore a wig in the classroom, I just had on a scarf. When they found out that I didn’t have hair anymore, the entire class practically rioted to have me show them. Of course I gave in and took off my scarf. Now, despite the nurses’ warnings, I never lost all of my hair from treatment. I had these very random straggling hairs all over that left me with a strange fuzzy look. When my scarf came off, a few of the kids gasped, some looked confused, but most of them just smiled. Two of the boys thought it was the coolest thing they’d ever seen and wanted me to spend the rest of the day showing people so they could watch the reactions. It was so wonderful to get to see my kids again before they left for first grade. And despite taking huge precautions, I still managed to get a cold that lasted an entire week after I visited the school. I guess my doctors knew what they were talking about all along, go figure.

Most excitedly for me, I started running again in June! After a lot of discussion with my medical staff and my Kris, I settled on a couch to 5k running program. My main concern was that I not push myself too hard into something too fast. I know how much I used to be able to run, but I am still nowhere near that yet. I just went a few times a week, and I made sure to really listen to my body when I was tired. About a month and a half later I finished the program and have now run my first 5k since surgery. I cannot express how good it feels to have this back in my life again. Running for me isn’t about weight loss or running big marathons. I love the feeling of finally running up a big hill and being able to keep going. I love letting my mind wander and the clarity I can get on the road. I also just love singing and dancing to my running music like a crazy person. When I’m exercising regularly I am happier, I sleep better; I feel better all around. I am so happy that my body is at a point that I can be active like this again.

Around the middle of June, I was finally given approval to have my port taken out! It was a very quick procedure done in my surgeon’s office. It was so non-invasive that I was told I could drive myself home afterwards if I really wanted to, but I opted for Kris to drive me instead. Once in the office, I got to hang out shirtless again (honestly, it’s weird for me to go into an office and not take my shirt off at this point. So many people have seen me topless they might as well be looking at my knees) Dr. D used some local anesthetic and reopened me at the scar from surgery. Once the skin was clamped open, Dr. D. cut the four stitches that were attaching the port to the muscle underneath. The line that went to the vein wasn’t physically attached, just fed into the vein in my neck. She just put two fingers on the vein and slid the line out, and that was pretty much it! The port itself was purple (awesome) and much smaller than I thought, but I guess things just seem bigger when they’re under your skin. To close me up, I just got two steri strips and a big bandaid. It seems crazy to think about if this were to happen to me last November, it would have been horrible. After everything I’ve been through now, it was basically going to get your teeth cleaned. So the port is out, and it feels awesome to be done with my robot parts.

So where am I now?

In a nutshell, things are going pretty well. Everything from my energy to my hair is finally starting to come back. My eyelashes and eyebrows have grown back (in a cruel twist, they completely fell out in mid-June for no reason at all. Thanks body, you’re officially insane). I am off all of my medication except for one pill called tamoxifen. It’s an estrogen blocker that I will be on for at least 5 years. Technically I’m still post-menopausal, but I’ve been told that that can change at any time. I was getting hot flashes pretty frequently when I started on the tamoxifen, but now that I think of it, I haven’t had one for almost 3 weeks now. Hopefully I haven’t just hexed myself into their return by speaking out my hot flash vacation. I cannot express how thankful I am that they seem to have gone away during some very hot times. I feel like they’ve decreased since I started running again, maybe there’s a connection there, I would not be surprised.

I feel like the hair is what everyone asks about first. Since I’ve been feeling better and actually wanting to go out in public again, I’ve been wearing my wigs a lot more often. I’m still not 100% comfortable being in public with just my head exposed. I was calling it my bald head but I don’t think I can get away with that anymore because there is hair growing back. Two months after chemo and I have maybe ¼ inch of hair over my whole head, and it is blonde! Like, super blond I have not seen on myself since I was 8 years old! I was incredibly blonde as a baby, so I guess that’s happening again. I’m at least growing hair faster then when I was a baby, I was bald until about age 2! I really do not like how I look without a wig or a hat on, but it is so much more comfortable, especially in the heat. Kris is my head’s biggest champion. He claims to like how I look without anything on and always gets audibly excited when I take off my head wear for the day. People will just make comments about my head, weather they think I’ll hear them or not. I’ve had some people just blatantly stare at my head, or loudly comment to a friend about “…fucking scenesters think they’re rad but they look ridiculous.” My personal favorite has been the group of teenage boys calling me “fuckin’ dyke” while I was running. I wasn’t even aware people were using that word. I would just rather be a little warm wearing a wig than deal with ignorant rubes. I’m hoping to get another half inch by the time school starts so hopefully I can start being out without a wig, hat, or judgment. I know it’ll grow back eventually, it is really frustrating it’s not faster.

I met with my patient advocate again after I finished chemo. Being a nurse that has battled breast cancer herself, she has some wonderful unique perspective and a wealth of knowledge. It’s strange to me the instant connection you feel to someone knowing that they’ve gone through the same terrible experience. It’s definitely a strong sorority. It’s fantastic to have supportive friends and family around, but sometimes it is just nice to have people who know what you’ve gone through and can commiserate with you. She was able to vocalize what I have been feeling, that I’m done but I’m not done at all. The fatigue lasts over a year in a lot of people, and your body will continue to react strangely for even longer. For the next few years, every time something is wrong with or in your body, you will think you have cancer again. Basically every time I get a weird cramp or a tingle in my arm, I need to call and let my oncologist know because it could be a sign that something else is wrong. Not just that but for the rest of my life I have to ‘have had cancer’ and there is always a chance that I could have it again. I did as much as I could to prevent that, but it could come back. Unfortunately most studies on cancer patients only go out 10 years, 20 at the most. I am fully intending to live beyond 20 more years, and that’s a big scary blank. I know that worrying has never done an ounce of good in this world, but it’s very hard to get some things off of your mind. At least I’m not alone is this mess.

I am completely done with chemo, and I’m in remission. All I have left to do is just the cosmetic stuff. I’ve got surgery scheduled for September 4^th. Dr. L will be taking out the tissue spacers and putting in the final implants. They are a lovely tear drop shaped implants made of gummy bear silicon. They are incredibly durable, and if they were to break, they don’t leak, they stay in a solid state. I will talk more about my new fake boobs in another post when I can talk more about surgery. I’m very excited and curious to see what I’ll look like when it’s all said and done.

I don’t think the next entry will take 3 months to write, but you never know, I am a busy lady.

Once again, thank you guys for all of your love and support. This journey was hard, and it’s still going! There is no way I could have gotten through all of this without the kind thoughts and care you’ve given me. 

Finally you can see my bald head! This was from our beach trip last week!

Good News Everyone!

I know what you’re thinking, “Amelia, isn’t this Thursday another round of chemo for you? Why aren’t you in bed wishing for death and trying not to vomit?” First of all, congrats for following my treatment schedule so closely, not even my brother does that! (Hi Moses, you’re a good brother and I love you even with our family’s charming inability to plan/read/follow schedules.) Secondly, today was supposed to be my final round of A.C. chemo treatments. Yet here I sit, perfectly comfortable with hardly a med in my body. It is a very good thing, so let me explain.

The day before scheduled treatments I always have some blood work done and meet with my oncologist. Since chemo drugs just wreak havoc on the body, my oncologist closely monitors the levels of important things (like white blood cell count) in my body. It’s also a good time to check in with the doctor, see what meds are working, what’s not going well, and hopefully fix any issues I might be having with the whole process. I’ve gone to these meetings with some of my support team, but I’ve also gone by myself as well, so it’s not too big of a deal for me. At this point in the chemo cycle I’m off most, if not all, of my anti nausea drugs so I do have the ability to drive myself (it’s very exciting), so going solo is a perfectly good option.

As I drove myself to the hospital, I just felt differently then I had been before. There was a nagging sense of dread that was just starting to creep over my conscious. True, I never really want to go to these appointments, but just the thought of going through the whole cycle one more time was weighing heavy on me. When I go solo to appointments I have a necklace that Kris gave me I like to wear; it’s my way of having him with me when he can’t be. From the time I parked my car I was fumbling around with it almost non-stop. By the time I had made it into the lab to have my blood draw, my stomach was upset and I was just doing my best to hold back tears. I feel like I have made it so far in this process being strong and being okay with whatever was going to happen to me, but something was just finally starting to crack.

I went back with the nurse to have my blood drawn from my port, something that has been a little bit of an ordeal the last few times its been attempted. Apparently my body is very good at recognizing foreign objects and wanting nothing to do with them. The line in the port that connects with my blood stream has been blocked the last two times the nurses have tried to access it. This results in attempting to clear the line with saline multiple times before using something that breaks down proteins and can open up the line again. One of my favorite nurses referred to it as “Drain-o, but for your veins.” (side note, it should totally be called vein-o). Everything is administered into the port by syringe, and every time the saline is put in I get a very sickly metallic taste in my mouth and nose. This whole process goes on for upwards of 30 to 45 minutes. It’s not what I would call a pleasant experience, but it’s not the worst either. The nurse and I were all geared up to deal with another blockage in the blood line, and the blood flowed perfectly on the first try. It was a very good sign that things were looking up for me. It also further proves my theory that the more prepared you are, the less likely you’ll need to use your back up materials. Anyway…

From the lab I travel down the hallway to Dr. T’s office. I was feeling better thanks to the quick blood draw but my stomach was still upset and I was just down. Every minute I spent sitting alone waiting for the doctor felt worse and worse. You know when you’re just having a horrible day, and it won’t stop, and you just feel on the verge of tears from everything? It was just that feeling creeping over me alone in reception. It was not good. I finally got called back, got my weight and blood pressure checked, and was once again alone in a room waiting. Dr. T finally arrived and asked me how things were going and it was all I could do to keep from sobbing my answer at her. Instead of my usual conversation on how meds are doing I cracked and just said, “This last round of chemo was so terrible, I don’t know if I can handle going through all of this again.” I just opened up about the overwhelming nausea and pain my body was in and how I didn’t even feel human while I was going through it. Dr. T listening sympathetically and after expressing her condolence, stopped to think for a moment. “Well, from here there are a few courses of action we can take.” Just hearing her say that sparked a small flame of hope deep inside of me. I figured there was nothing that could be done; I would just have to suck up the hellacious treatment one more time. But now, there was a chance, however small it may be, that this time could be different.

Dr. T spent the next few minutes going over my lab results from my most recent blood test, (it is amazing how fast they can get results, I can’t even get a pizza that quickly.) the write up that was done post surgery on the tumor that was removed in surgery, and her note from past appointments on how I had been doing with treatment. From all of this we got into a discussion of the path of cancer treatment. One of the nice things about breast cancer is the fact that since it is so common, there is a pretty clear pathway you are set on once diagnosed. The chemo pathway was 4 treatments of A.C. and 4 treatments of Taxol. However this is just the overall guidelines of what people normally do. Dr. T. informed me that because of all my test results and how god awful the side effects of the A.C. treatments were on me, that I wouldn’t need the 4^th A.C. treatment. As soon as those words were spoken I felt like the world’s largest weight had been lifted off my chest and I started to cry out of joy. No words can possibly explain how awful going through those treatments are and to be told I didn’t have to do the last one was the best news I had gotten since I started this whole mess.

Dr. T told me there are a lot of factors that went into her decision to forgo the last round of treatment. If my tumor had been 8 inches, or the lymph nodes were positive then I would have just had to suck it up and deal with the last treatment. Also my age was a factor in all of this as well. Apparently the younger the patient the worse the side effects of chemo are. I guess 55 year old women going through the same treatment can get by with one small anti nausea med and be just fine. Her theory is that younger women haven’t had to process as many drugs through their bodies before and are just hit harder by the chemo meds. I also learned that alcoholics have the easiest time with nausea while going through chemo, which to me is just fascinating. So my young healthy body is to blame for taking the meds so harshly, but I am assured it’s a good thing in the long run as my body is healing itself much more efficiently than my older counterparts.  Anyway, the point is my quality of life was in the toilet, literally, while on that treatment. Dr. T said what it really boils down to for me is that if my cancer is going to return, it will return whether I have 3 treatments or 4, so there is no need to keep putting my body through hell. It’s a bit of a downer to think of it in those terms, and it doesn’t mean she thinks I will get cancer again. Remember all of these treatments are just a numbers game, and my numbers won’t change by forcing myself through another horrendous A.C. chemo treatment.

Now this doesn’t mean that I’m completely out of the woods as far as chemo goes. I’ve still got the 4 taxol treatment to live through. It should be the same schedule of one treatment every two weeks, blood draw appointment the day before, and booster shot the day after. However, the taxol treatments are supposed to be much much much easier going on my body than the previous treatments. Where the A.C. treatments are one of the harshest on the GI track causing a lot of nausea, mouth sores, and intestinal distress, the taxol treatments are on the low end with most people experiencing no nausea at all! (If that statement doesn’t excite you, allow me to be overly excited for you!) Now I was told it’s still a possibility, so don’t go throwing all the anti nausea meds in the trash just yet, but my chances are very very good that it won’t be an issue any longer.  The taxol’s main side effects are fatigue and a general achy soreness in the bones. There is also an increased chance of hair loss, so all the lovely fuzz that’s still on my head might be out of here, as well as my eyebrows. Between nausea that is so bad you can’t get out of bed and losing the remainder of my hair, I will gladly take the hair loss.

The original plan was to have me start the taxol treatments today in place of the final A.C. treatment. However, since it’s a new chemo treatment I need to get pre-approval for it with my insurance so I don’t have to pay the exorbitant costs out of pocket. Since it takes a few days for approval to go through, my first treatment is scheduled for next Thursday (the 27^th). I basically get a week off between chemo treatments that I just get to feel healthy and alive! It also happens to coincide with Kris’s spring break from school. I cannot properly express how excited I am to have time off from chemo with Kris where we both have absolutely nothing to do. Instead of sad and nervous I just feel happy and hopeful. I know the next round of treatments aren’t going to be a walk in the park, but according to my doctors, other patients I’ve talked to, and the oh so reliable internets, these treatments are much easier to deal with. I will still have 4 of the taxol treatments, but I’m starting them a week earlier then I originally had scheduled. To me, this is yet more good news because that bumps up my final chemo treatment by a week as well! So instead of being done on May 15^th, I’ll be done with all of this crap on the 8^th! That then give me 3 weeks to fully recover for my birthday! It sounds silly but I’m so happy that I’ll be completely done with chemo by my birthday. I feel better knowing that cancer will only be present during one year of my life. 28 will be the year I found and beat cancer, 29 I will be a survivor.

So to recap, I’m not having the 4^th A.C. chemo treatment. I have a fantastic week off with Kris where all I have to do is feel good. I start my taxol treatments on the 27^th, and I am completely done with chemo on the 8^th of May!

Everything  is going very well and things are looking up. Hooray!

Chemotherapy: A pain in my ass

It just occurred to me yesterday that it has been an obscene amount of time since I’ve updated my blog. I think I’ve had a pretty valid excuse, but I’ve been told I can’t use “I’ve got cancer” in every award situation; for the record, I still think it’s funny, but my sense of humor has always been a little different. This all came about from talking to Daniel, Kris’s younger brother. I decided I wanted a change of venue so I spent the day on another couch at the family farm in Sheridan. Dan happened to have the day off of work so we ended up talking. He was having me describe the chemo process I was undergoing and stopped me to ask if I’d written any of this in the blog. He made the valid point that aside from letting people know what I’m really going through its good for my own personal records. That Dan is one smart, salty-mouthed man. You can thank him for my glorious return to the world of online journaling.

As I write this, it has been about a month since I have started chemotherapy. During this therapy I will have 8 different chemo treatments, each one two weeks apart. If you’re feeling fancy, there are three different drugs being used in treatments: Adriamycin (A-dree-o-my-sin), Cytoxan (si-tox-in), and Taxol (tax-all). Its referred to as A.C.T. treatment, which quite frankly is just so much easier than trying to figure out the correct pronunciations of those drugs (I did my best based on what I can remember). The first four treatments are the A and the C parts, the final four treatments will be the T. Sounds easy enough right?

Now some might be asking, “But Amelia, if you had surgery successfully removing all of the cancer from your body, why would you need chemotherapy?” That is a fine quandary, and one that I asked my oncologist as well. The easiest way to explain it, according to my very trusted Dr. T., is that it’s simply a numbers game at this point…side-note: no I cannot remember exact figures so please do not quote me with any sort of authority. There are a lot of people who have absolutely everything removed from the body during surgery. You hope and pray that you fall into this category but unfortunately not everyone does. As far as our technology has come, there is still no way to be 100% sure that every little speck of cancer has been removed from my body. As time passes and I get older, the risk for reoccurrence gets higher and higher. Reoccurrence means any kind of cancer coming back, not just the specific one that I was diagnosed with. With the A.C.T. treatment, my risk of any occurrence goes down by 50% or more.  So the choice (yes it is a choice, I could have said, “screw it” and called it a day with surgery) to undergo chemotherapy came down to if I was willing to suffer now for 4 months to statistically increase the likelihood of a better life for the rest of my years.  Since I’m planning to live a whole lot longer than just 5 months, it seemed like a no brainer. Besides, do you remember that little micro-metastasis that was found in my lymph node? Well I sure do and on the small chance that the little tumor had already taken a trip to somewhere else in the body, I want it squashed and dead.

Before I stated this whole ordeal, my knowledge of chemotherapy was limited to the image of a bald person vomiting while their veins are being pumped with god knows what. Well, some of that is accurate, but it’s a very incomplete view. That “stuff” being pumped into my veins would be the aforementioned A.C.T. treatment. The chemo drugs work by targeting cells that are rapidly multiplying. Cancer can be defined as cells multiplying out of control, so the drugs would target them. Unfortunately, there are a lot of cells in the body that multiply very quickly. Side note, your body is amazing; if you’ve never taken the time to contemplate it before, just think about the millions of things that are happening inside you right now. It is insane and very cool.  Some of the cells that turn over the most in your body are your entire gastrointestinal tract (G.I. tract= the mouth, stomach, bowels etc.), your reproductive system, and your hair. That is why people get nauseous and lose their hair during treatment. Someday I hope that technology will bring us to a place that can track, target, and destroy cancer cells without affecting the rest of the body, but until that utopia arises it seems like a small price to pay.

Aside from all the side effects of chemo, treatment itself is actually not too terrible. It all really starts the day before I get the chemo drugs. I go to the hospital and have my blood drawn to check my various vitals, and then I have a nice chat with Dr. T about how the previous round of meds went. During this time I can get different prescriptions (more on the insane amount of those later), address any concerns I have, and just try to prepare the best I can for the hellish onslaught that will start in 24 hours. I’m sent on my way and really I just try to enjoy feeling normal for a while.

On the day of treatment, it’s right back to the hospital and my friends at oncology. The room that the chemo meds are administered in is surprisingly comfortable. It’s a large, open room littered with big comfy armchairs. There’s a big window that looks out over downtown Salem, and I’ve never seen more than 10 other people getting treatment at the same time I’m there. After I’m seated and comfortable (I usually take a blanket since I’m cold 90% of the time), my very nice oncology nurse hooks up my port to some really good anti-nausea medication. The two medications I’m given are supposed to last for 72 hours, and are so hardcore that apparently insurance companies won’t approve of them for anything but chemo. Everything, including the chemo drugs, is put into my body through my portacath, or port.  My port is that weird little quarter sized device that’s just under the skin by my right collarbone.  It is single handedly the best thing I did for myself before starting chemo. I can use the port for blood draws and to administer anything intravenously. My arms are never touched and I don’t end up with bruises or track marks on my forearms. Even better, I have a topical cream that numbs the skin so I don’t even feel the initial needle go in! I would highly recommend it to anyone faced with chemo or something similar, it is so good.

After the anti-nausea meds are in my system I’m ready for my Adriamycin. The nurse brings in what I can only describe as a giant syringe full of almost neon red liquid. Seriously this thing is about as big as three Costco dogs tied together. I’m also given a cup of ice chips to chew while the Adriamycin is being administered. I believe the ice chips are to help lower the temperature of my mouth and reduce the risk of having mouth sores as a result of this treatment. The nurse has to hand-administer the Adriamycin, so for the next half an hour they sit by my arm chair and slowly pump this shockingly bright liquid into my body. One of the cool things (cool to me) about this drug is that the color doesn’t metabolize while it goes through the body. That means the next few times I pee, it’s a beautiful sunset orange red color. I’ve been told that some people can cry red tears from this treatment too, but alas I haven’t had that night stigmata experience. I guess some people have a very adverse reaction to Adriamycin, which is why the nurse has to hand deliver it versus putting it on drip. I have been very lucky to not fall into that category. Aside from the person sitting next to me and watching them administer the drug, I couldn’t really tell when it’s being put into my body.

Once all the red Adriamycin is in, the nurse gets the Cytoxan. This one is pretty uneventful, I don’t even get more ice chips for it. The Cytoxan gets hooked up to a drip and then just takes 45 minutes to an hour to enter my bloodstream. During this time I’ve been so pumped full of liquids I’m usually in need of a restroom. Since I’ve got the Cytoxan on drip I get to shuffle to the restroom with one of those big IV stands. During this time, I get to see whoever else is getting treatment at the same time I am. Needless to say I have thrown the age curve every time I’ve been there. Some people are knitting, some are reading, quite a few just sleep through their treatment. Everyone has a fragile air about them, and I always wonder if I look the same way and just don’t recognize it. I like to think I’m strong, but that only takes you so far when you’re being injected with something that’s a derivative of mustard gas (for real, Cytoxan, look it up).

The Cytoxan is the last thing I get and, after the drip is done, I am free to go on my merry way. Well, the nurse takes the needle out of my port, THEN I’m on my way. After treatment I have an hour to two before I’m ready to drop from exhaustion. I usually try to eat something during that time, kind of like a last meal before the nausea and fatigue sets in. After delicious glorious food, I climb into bed and sleep for a while. When I wake up it is to a world of discomfort. The nausea is by far the worst part of this whole experience. On top of the two IV meds I’m given at the hospital, I have 5 anti nausea meds that I take during the first part of recovery. Even with all of that help, I am still uncomfortable and ailing for at least 5 days following treatment. It’s hard since I know eating and drinking fluids helps me feel better, but it’s the last thing I want to do. The other side effect that’s not joking around is the fatigue. I really cannot tell you too much about my first few days after treatment since I’m completely wiped out and spend the majority of the time either asleep or on my way to being asleep. If I’m treated on Thursday, it isn’t until Monday that I start to regain some form of cognizance. On top of all of this, my mouth becomes really sensitive. I don’t know if you’ve ever woken up while having a bad flu and you feel like your mouth is just coated with while yucky film, but that is essentially what happens about 4 times a day. I brush my teeth a lot and use a specialized mouthwash but it only keeps the yuck at bay for so long. All of this compounded with bone and joint pain and that’s a pretty good idea as to what I’m going through.

I almost forgot about the day after treatment. 24 hours from the end of treatment, I have to drag my poor sick butt back to the hospital and get a shot. I cannot remember what the name of this shot is but I know two things. One, it promotes bone marrow production which is important to keep my vitals at normal levels. Two, it is obscenely expensive (thank god for insurance). I get this shot in my right arm from a very small needle, but it takes about 2 minutes to slowly inject the whole thing. That might not seem like that much time but think about a needle going into your body for two whole minutes and you can see how time can stretch. Some of the main producers of bone marrow in the body are the sternum (chest), the lower vertebra (lower back), and the femur (in the thigh). The shot kicks production into high gear to make up for the losses it suffers due to the chemo drugs. Those three spots become very painful and achy for a week after the shot. As if I needed another problem to deal with during this time…

Aside from the aches and pains, nausea and fatigue, the hardest thing I have had to deal with is the isolation chemo inflicts. Due to the nature of treatment, my immune system is pretty much nonexistent.  Any small cold of flu germ will, at best, land me in the hospital for days. Because of this, there are millions of restrictions placed on those in chemo. It have turned me into a Howard Hughes level hypochondriac. One becomes incredibly aware of how many people in the general public are coughing, sneezing, or wiping a runny nose on their sleeve (it happens, a lot!). To avoid crowds as much as possible I have had to take an extended leave of absence from work (for some reason, Dr. T. didn’t think kindergarteners were very clean), and I am pretty much relegated to the house. Even the simplest task, like going to the grocery store, becomes a stressful endeavor that has to be planned around peak hours and accompanied by copious amounts of hand sanitizer. Not to mention the fact I can only really drive for about 3 days out of each chemo cycle because of the drugs I’m on. I have to be incredibly careful with the food I’m eating as well (which is ironic since eating is such a challenge anyway). I can’t eat from potlucks or buffets, it’s been recommended I only use paper plates and disposable cutlery to reduce germs, and worst of all, I CAN’T HAVE SELF SERVE FROZEN YOGURT!!!!!!!! It is the most extreme injustice I have experienced so far. It has to do with the fact that the frozen yogurt machines are accessible to the general public, and the general public are dirty animals. I think it goes without saying that I’m also not allowed to go thrift shopping while in treatment which is putting a huge downer on the days I’m feeling better. I’m basically supposed to just hang out at the house and wait and wait and wait until treatment is over in order to preserve my health. It is hard, frustrating, and incredibly isolating.

Tomorrow marks my 3^rd chemo treatment. After that I will only have one more A.C. treatment and then I’m halfway done! Even better, I’ve been told by my doctor and nurses that the Taxol treatments are much much easier as far as the nausea and fatigue go, so I’ll be ¾ of the way done with the hard treatments! My final chemo treatment will be on Thursday, May 15^th. I’ve started a countdown that is putting me at 70 days until my last go. Even better, two weeks after the last treatment, (how long it should take me to start feeling normal again) is my birthday! I’m very excited that all of this crap won’t be following me into another year of life; one year was quite enough, thank you. I don’t know what I’m going to do to celebrate but rest assured it will involve froyo! It seems like such a long ways away from now, but its only two and a half months, and I’ve dealt with worse for longer. Aside from some very understandable frustrations, this whole ordeal has made me very thankful. I feel so lucky I caught this disease while it was in an early state, and that I’m young and resilient enough to fight it all off with success so far. Yes, I get sick, I get tired, and I have lost my hair (I’m super bald right now, it’s crazy), but I’m alive and still going strong. One of the chemo nurses told me something during my first treatment that’s really stuck with me and given me perspective on the whole thing. She said that feeling sick and having your hair fall out is just a sign that the chemo meds are working everywhere in the body. So I take all of the downs simply as a physical reminder that chemo is indeed working and I will survive this whole crappy ordeal.

It sucks, but I am stronger than cancer!