I’ll be ready in a sec; I just need to put on my hair

I made a plan to unveil my new ‘do on Christmas Day. (On Christmas Eve I planned to wear a hat I knitted.)

Since it would be the first time I wore it out, I wanted it to be a big moment. I wanted to get an outfit that would compliment my new hair, while simultaneously looking Christmas-y. I planned on getting a green sweater dress, which turned out to be an impossible undertaking on such short notice, so I settled for a green sweater shirt that I found at Express.

I showered early on Christmas so my hair would be dry when it came time to put on the wig. They had given me a little mesh cap in the store because I’m still shedding a lot, so I wore that underneath the wig. And the wig was itchy. It was itchy by the seams, it was itchy in the middle of my head, pretty much everywhere. I took it off while I was in the house and looked online for help. Apparently taking it off and rubbing witch hazel would help a bit, but I don’t just have witch hazel lying around the house. I bought a couple of wig caps on Amazon, but that was not a short term remedy. I put the wig back on before we left and took my wig stand in the car in case I needed to take it off at any point. I was determined to not let that happen.

I made it through the beginning of the party okay, but at some point I could not take it anymore. I didn’t want to mess up the wig, so I couldn’t do much in front of everyone without totally revealing the fact that it wasn’t my hair. Most people’s hairlines don’t move when they scratch their head. (I think everyone knew it was a wig, but still.)

I figured out a solution. I went into the bathroom, took that wig off and just scratched my head. For like a full minute. Then I put the cap and wig back on and resumed the party.

It may be itchy, but at least it looks nice.

I look like a demon here, but that hairline is pretty realistic.

This was the Christmas present I gave to my scalp.

Whatever, it was worth it.

This is sort of what I’ll look like when I’m bald. Now, back to the wig!

This happened three times that day. Once we left, that wig was off before I made it to the car. This is a long shot, but I’ll take any wig-wearing tips you got. I honestly think once I’m totally bald, it’ll be better because my own hairs won’t be poking at me. That moment may be coming soon because my bald spots are getting bigger and I’m more and more tempted to just shave it off.

I picked up my prescription for a brand new head

Actually cranial prosthesis is a very medical sounding phrase for “wig,” which just does not look as good on a prescription pad. This was something about cancer treatment that I had never known before I started – insurance will cover a wig for you.

My mom and I decided to go wig shopping so we swung by the hospital to pick up the prescription and then went to a nearby wig shop. When we walked in, we were immediately surrounded by a bunch of heads with a variety of hair styles and colors. The woman said to pick out some styles I liked and we’d try them on. I felt like a lot of the styles looked like they came out of a different decade, or they just looked too old for me. I was drawn to a red wig which looked right when I tried it on. In the interest of not picking the very first one I picked up, I tried on some more, but we quickly circled back to the red.

This was the one:

This was not the one:

Since you can’t talk about wig shopping without talking about wig prices, the one I got was on sale for about $500. Since it was on sale, it was only available in the color I tried on, which I liked. It’s made with synthetic hair. Wigs made of human hair can cost thousands and last longer, but are harder to maintain. (Wigs made of human hair are also slightly creepy.) Most of the wigs in the shop were synthetic. The woman behind the counter said that insurance only covers about $500. She told us some care instructions which were not to put it near a heat source, not to wear hats with it, and to wash it every six weeks with the wig shampoo.

After my mom jokingly asked if the mannequins had names, the woman told us that each hairstyle had a woman’s name. She started pointing to various wigs and listing out their names. I wore my new wig (named Spicy) out of the store.

After our successful shopping trip, we decided to go to another store and see what they had. My mom thought it would be nice to have two different styles so I can mix up my look.

This store was based out of a hair salon and we needed an appointment. Luckily, there was an appointment available about a half hour from when we arrived at the store. A woman named Linda took us to the wig part of the store and said to find a style that I liked. We would order wig in a color similar to my natural hair color. We tried on a lot more wigs here, but I didn’t like many of them.

Finally I picked up a wig, that I thought was cute and instantly knew I would get it when I tried it on. It was very “Mandy Moore in How to Deal.”

We color matched it to my hair as best we could and will pick it up when it comes in.

My mom asked the woman at the salon about wearing a hat with the wig and she said of course I could wear a hat over it. (Astute readers will remember the conflicting advice from the woman at the first place.) I guess I’ll do my own research about taking care of it.

My next post (an actual plan!) will be about what it’s like wearing the wig.

The next side effect I’m blindsided by better be perfect skin or something.

This past treatment, I was given Emend through my IV and a prescription for lorazepam, which is commonly used as an anti-anxiety drug, but apparently helps with the effects of nausea (and made me walk into the wall at least once). I figured that taking care of the nausea would make this recovery easier (nope) and shorter (it’s still going on). Let me walk you through the growing list of side effects.

The tongue pain lasted for much longer than it did last time. On Saturday, I had my engagement party and I could barely eat anything due to the pain. My stomach felt empty, but the idea of food was completely unappealing. (I did manage a cupcake and a half, so it wasn’t a total loss.) I have since been prescribed some Magic Mouthwash, which I got just in time for my tongue to be feeling back to normal. I haven’t tried it yet, but it has lidocaine in it, so I guess it’s supposed to literally numb your tongue.

My hair is thinning, something I’d never imagine would happen to me. I have always had thick, and until recently long hair. Originally the doctor mentioned that my hair would thin, but it probably wouldn’t all come out. Then a nurse said that I’d probably be able to keep my hair in a low ponytail for the next few months and that it wouldn’t be too bad. At the most recent treatment, a different nurse said I should be looking into wigs and probably cut my hair even shorter than it already was. That was the more realistic hair advice. I bought a hat for my engagement party and resorted to putting my hair hair in pigtails because I didn’t want people at my party to see it falling out. At that point, it was coming out by the handful.

The next day, I decided I had had enough. For some reason I didn’t think thinning hair would bother me if it was only shoulder length, but I felt very distressed. In the morning I got dressed, and went hunting for a salon in Hoboken that would take me as a walk-in. The first place I went to was by appointment only, and even after playing the cancer card, the receptionist said the earliest appointment she could get me was on January 4th, was that okay?

The second place had one receptionist and one hair stylist working at the time. I explained my situation because I didn’t want the hair stylist to be startled and she agreed to cut my hair. As she was washing it, she kept leaning over to throw loose hair in the garbage. There was enough hair each time that I could actually hear it hitting the bag. Once I was all washed and draped, I told the woman that I wanted it short so that I’m not pulling giant pieces out and that I like the way Michelle Williams keeps her hair. She started off by cutting a big chunk out and then started shaping it. Then she started talking to me about how one of her close relatives is going through treatment as well, and recently got a similar haircut. It turns out, we’re patients at the same place. If I didn’t feel right getting the haircut before, I definitely felt like I was meant to go to that place at that time. When she asked how I’d like the back, I totally deferred to her judgement because I know nothing about short hair. We opted to keep the front on the slightly longer side, which I definitely like now because when I wear a hat, it peaks out. Now I get surprised every time I look in the mirror, and I’m still shedding like crazy, but I’m glad I chopped it all off.

Back to the symptoms!

The Neupogen shot I was given to raise my blood counts has caused me a lot of bone pain. Having never had bone pain before, I didn’t immediately recognize it as bone pain, but it felt really deep. (Like, in my bones I guess.) The day after my shot, I had bone pain in my thigh and hip area that went away after a day or so. I figured that was it. Then on Sunday, I had such bad back and shoulder pain that I wanted to cry. I could barely sit up, but I also couldn’t get comfortable when I lied down. I went to bed early, but when I woke up in the middle of the night, I had trouble sleeping because I was in so much pain. No position was comfortable. On Monday, the pain was still there, so I didn’t go to work. I contacted the cancer center and was told that the pain was from the Neupogen and that taking a daily Claritin should help with the pain, but it would take a few days to kick in. Yes, the over the counter allergy medicine would help the bone pain. My mom also got me pain relieving patches, which felt really good. My left elbow started hurting a lot, but the patch masked the feeling.

The last big symptom (so far) has been a crazy amount of fatigue. There have been quite a few moments where I stood up only to feel like I needed to sit down almost immediately. One day I was getting ready to go to work and I got winded walking around my apartment. I ended up going anyway, which was a big mistake, and left around lunchtime.

Here’s hoping the Claritin, pain patches, and Magic Mouthwash make the next treatment more bearable and that by the time of the 8th one I’ve figured this whole chemo thing out.

2 treatments down!

After a bit of a delay, I finally got the second treatment. I went to the lab where I was asked for the millionth time if I had any water today. I had already had at least 6 glasses and it was only 1 pm. The lady taking it said I must just have thick blood.

When i got upstairs, my white blood counts had gone way up and my neutrophils were are 3.0 which is on the low end of normal. (They were 0.2 last time, while normal is considered 2.5 – 8.0. I think the hospital’s cutoff for performing chemo is 0.5.) I had a bit of a cold, but was told the only thing that would affect is what floor I get the treatment on. First they swabbed me so they could get the results of what was happening. Since there were no transplant patients on the 2nd floor at the time, I was allowed to go there, wearing a mask and keeping the curtains drawn.

Jack wore a mask too because he was sneezing and wanted to match me, style icon of the cancer center.

I worked with a different nurse this time who answered all our questions. I mentioned that I noticed more hair in the shower than I usually do because whenever I run my fingers through my hair, a few strands come out regardless of if it’s wet or dry. She told us to get a wig for this week. (I have a party coming up that I went with a cute hat, so hopefully that’s good for the time being. Plus I have A LOT of hair, even with it short so hopefully it looks okay at the party. After that, I don’t care too much.) I have been told (by me, and by people mocking me) that I look good in every hat, so it seems I’m going to get to put that to the test real soon. I asked the nurse if she though I would be cueball bald, and on this chemo regimen she said yes. It seems like every time I speak to someone, they make the hair loss a little bit more dramatic. I think I would prefer to learn straight off the bat that I might look like Mr. Clean.

Quick note to anyone thinking they might shave their head in solidarity, which I don’t expect from anyone except Hannah🐦: Don’t do it until I’m bald, bald. I would feel terrible if my hair just wound up thinning in a not so bad way and you looked like Caillou. I’m going to wait.

Link to comic<<

The infusion was a little rougher this time around. They gave me more pre-meds, but a few of the chemo drugs burned on the way in. The nurse slowed down the dacarbazine because my arm was hurting a lot and kept putting warm packs on it. As soon as the warming went away, the pain would come back. She offered to slow it down even more, but I declined because I wanted to get out of there.

We consulted with the nurse and decided to go ahead and get a port put in for next time. If I had easier to access veins, maybe we would have kept trudging though with the IV, but my veins are tiny and with the port, you don’t feel any pain during infusion and the infusion is shorter.

IKEA > chemo

I was unbelievably annoyed when i went up after my lab work and was told that I wouldn’t be getting chemo because my blood counts were too low. I had to get a shot of something called Neupogen to raise my blood counts and I’m now going to be getting the second round of chemo on Tuesday. Now two days before every chemo treatment, I’m going to have to give the injections to myself, which I’m a total pro at because of the egg retrieval.

What really annoys me is the fact that I went to the doctor last week and they even had an appointment set up to give me the shot, but decided against it. Apparently for most people those counts start going up after the first week, but for me they kept tanking.

Since I wasn’t getting chemo that day, I went to the cooking demonstration that they had set up downstairs. They have a big kitchen and a big TV over the stove. The woman cooking could change the camera angles so we could see what she was doing on the screen. The food made me feel a little less annoyed. The theme was “holiday appetizers” and the woman made a ginger pear mocktail, spinach and artichoke cups, and a butternut squash and white bean dip.

On the way home, we passed me and my mom’s happy place, IKEA. I could have been getting cancer treatment, but instead I ate some veggie balls and tried out some couches. Something about looking at furniture with Swedish sounding names just makes me feel a lot better.

I think it’s safe to say that chemo sucks

This Friday, I’m going for my second round of chemo, which will complete my first of four cycles.

Thanksgiving was the day before my first treatment. I couldn’t even enjoy it as much as I should have because I had a nasty case of heartburn as a result of some antibiotics I had taken after the egg retrieval. So that wasn’t totally the cancer’s fault, but let’s blame the cancer anyway. Throughout the day, some people joined me in a water drinking contest because I was told to drink a lot of water before chemo. Even water hurt to drink, so I lost the contest after around 9 glasses.

Friday, I tried to eat some Thanksgiving leftovers for breakfast, but I was still dealing with the heartburn so it did not go down easy. I also drank 3 large glasses of water and some tea because I wanted my veins to be nice and plump.

When I got to the hospital, I got some lab work done first. That happens every time because they need to check your blood counts to decide if you’re well enough to receive the chemo. My white blood count was abnormally high because my immune system was in overdrive due to the lymphoma. The lab work was followed by an extremely short visit with my oncologist. I was thankfully prescribed some medication to deal with the heartburn, in addition to Zofran and Compazine to deal with the nausea that was imminent.

Someone walked me and my entourage of 6 people over to the treatment room and I was expecting it to be like cancer treatment is in the movies, where all of the recliners are in a circle around the room and you make friends with all of the other patients who are dealing with the same thing. In actuality, the room was just a big hospital room with a bunch of recliners spaced far enough away from each other that you don’t actually have to talk to anyone else. There were curtains you could pull to give yourself more privacy. There were motivational phrases around the room. A nurse told me to go to “the open bed under ‘Believe’.”

A nurse put an IV into my left arm. She told me that my veins weren’t great and that we’ll try using the IV this time and next time, but I may end up getting a port. The first medication I was given was an anti-nausea medication. While I was waiting for the chemo drugs to be brought up, someone came around with sandwiches and snacks. I said I was a vegetarian and she offered me chicken sandwiches and tuna sandwiches. I opted for pudding. (My dad ended up getting me soup and chips from downstairs.)

The first actual chemo drug I was given is called Adriamycin. It was red and came in a syringe. I had read two things about Adriamycin online: that I should chew ice to prevent mouth sores and that it would turn my urine alarmingly red. We asked the nurse about that and she said that they usually don’t give people ice during ABVD and that the drug would turn urine a pale orange color. Even though the drug cycle is called ABVD, after the Adriamycin I was given the Vinblastine. This one was also given as a syringe. The next drug was the Bleomycin. I was given a small dose of it and had to wait an hour to see if I had any reaction to it. Bleomycin can cause lung issues over time and some people wind up getting it removed from the drug regimen. After the hour long wait, I was given the rest of the Bleomycin, which was followed by the Dacarbazine.

Aside from the whole process feeling long, it wasn’t too bad. I felt relatively fine throughout the whole process. I was told I looked very pale, but that seemed to be the worst of it. We left the hospital and drove to Hoboken to pick up my prescriptions. I was feeling good enough that I went into the pharmacy to get the prescriptions with my mom. Then we started driving to Brooklyn and I started feeling terrible. The nausea hit me hard. I took a Zofran when I got home, but it was kind of too late.

The next few days I didn’t leave the couch. No food was appealing enough to eat. Every little smell bothered me. When I threw up, it tasted like poison. (It probably was.) On Sunday, I started getting very bad jaw pain, so it hurt to open my mouth to chew. On Monday, my tongue started feeling very raw, like I had eaten too much of something acidic. It felt like I had the flu for like four days, but it was worse because of all the weird side effects. On Tuesday, I felt well enough to go into work, but I was still surprisingly weak. In the second period of the day, I was showing a class how to do a problem on the board and I felt wobbly, and like I might faint if I stood up for any longer. I essentially spent the rest of the day in a chair, only getting up when I absolutely had to.

I had a follow-up appointment the following Friday and I was absolutely dreading the next round of chemo. This time the doctor is prescribing me different anti-nausea medications in addition to the other stuff, so I am hoping they work a lot better. This past week I have felt a lot better physically and mentally, and I am just trying not to psych myself into feeling nauseated before I even get treatment.