"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!