Just An Observation

In the wake of Chadwick Boseman’s death, people have been remarking on how amazing and inspiring he is for continuing to work through his cancer. And indeed, it is very courageous. He didn’t let that disease stop him from doing what he loved.

I also think that it is important to note, this isn’t a new thing. Many people continue to work through cancer and other terrible diseases. I am in no way belittling Boseman, but I feel like it is worth acknowledging that this is something that many people with cancers and serious illnesses do. It’s equally inspiring on all levels.

I continued to go to work as often as I could during my chemo rounds for Diffuse Large B-Cell Lymphoma. We played my schedule by ear. I would text my boss if I was feeling too bad that day or my oncology team would let my other boss (a physician himself) know that I wouldn’t be able to come in. Other than that, I tried to make it business as usual for me. I would usually take the day after chemo off since I would feel pretty bad and that would be when my Onpro device injected my Neulasta.

There are some people who weren’t as lucky as me. They either felt too awful to continue working or their platelet/white blood cell counts were too low. Some even have to quit their jobs. I for one know that if I still worked at my old retail job when I got sick, I would’ve had to quit (if I was even still alive by the time my cancer was discovered).

Now, most people don’t do action-oriented stunts and have muscles for days like Boseman. But it is important to acknowledge that there were days where he had to have felt like pure crap. Absolute shit. People made comments about what type of expression he had at a premier or how tired or irritated he looked. Some criticized him for that. And towards the end, he had lost quite a bit of weight, something people made fun of him for. I really hope the people who took part in the criticism feel like shit for it honestly. But Chadwick isn’t the first to work through cancer and he won’t be the last (not until all cancers are cured anyways).

Lots of people have to work through their treatments for various reasons. Some, for example, can’t afford to not work. Some insurances aren’t as pleasant as others and do not cover the treatments for different reasons (sometimes it’s a clinical trial, other times the company is just an asshole). Grants do help with some of the costs, but they don’t cover everything. Some people prefer to work to stay busy and keep that sense of normalcy. I was so grateful when my company agreed to allow me to work from home. I was going stir crazy just laying on my sofa. At least that way, I could still work on something and feel like I’m participating.

There are many people like Chadwick Boseman. People who refuse to let cancer or any other serious illness stand in the way of their life or dreams. It’s admirable for sure. People who are unable to continue working or doing what they love are admirable too. They are fighting something that is often unseen. Let me mention here that there are companies who have fired their employee after finding out about their diagnosis. Illegal yes, but they figure out a reason to justify it.

Many people didn’t know Boseman was sick, and there are people you pass every day that don’t look sick either. But, like him, they are fighting some sort of disease (be it cancer or depression). When I was working through my treatments, people didn’t know I was sick until they asked. I had decided to wear hijabs through my hair loss (the reason behind this is discussed in another blog post) and many thought I was a Islam convert or that I had always been Muslim and was observing something (this came with it’s own bout of racism I was completely not expecting from people in my town).

I feel that Chadwick Boseman’s high profile career played a role in how people reacted when news of his death (and cause of death) came to light. People can’t help but be impressed by him doing multiple films (including 4 Marvel films) in between surgeries and chemotherapy treatments. Hell, I’m impressed by that. I couldn’t imagine doing that. But there are people who do things as equally impressive, such as getting up for work at 6am and working until 5pm or later the day after chemotherapy. Or maybe they keep a positive attitude and do their best to make others laugh. Maybe they help someone else through a hard time and never disclose their own struggles. The next time you find out that someone is working through their cancer diagnosis and treatments, I hope you treat it with the same level of awe and respect as you have with Chadwick Boseman.

Historical context matters people!!

http://persephonemagazine.com/2010/12/listening-while-feminist-in-defense-of-baby-its-cold-outside/

https://www.theodysseyonline.com/baby-its-cold-outside-2622425571?utm_source=Facebook&utm_medium=Owned+Social&utm_campaign=Aud+Dev

The above links should be required reading for people who are suddenly up in arms about Baby It’s Cold Outside.

Back in the day when this little ditty was written, it was UNACCEPTABLE for a woman to stay the night at her boyfriend or fiancé’s house. Like, if you emerged from your boyfriend’s/fiancé’s house the next morning after a party, and someone saw you…girl you’d better be ready for some serious scandal and everyone questioning your reputation. Now-a-days, that viewpoint seems very anti-feminine…women should be allowed to stay the night with whomever right?

“What’s in this drink” was a common phrase of the time, often used by a person who wants to blame what they’re about to do on alcohol. It has NOTHING to do with him putting GHB or other date rape drugs in her drink.

In the song, the woman maintains her convictions to leave and never once does she cede them. She is only doing this to protect her reputation (see the lyrics about her family…since they’re obviously thinking the worst of her for staying).

The song was innocently written and has been around for 74 years!! And only now is it an issue. It wasn’t an issue for the people who wrote it, as they instantly became very much sought after for parties. It was a song sung to indicate to party attendees that it was time to head home.

If people want something to be enraged about in terms of songs that degrade women, here’s a list of songs:

Blurred Lines (Robin Thicke, T.I, Pharrell)

So Much Better (Eminem)

Gold Digger (Kanye West)

Better Than Revenge (Taylor Swift)

Fine China (Chris Brown)

Ain’t No Fun (Snoop Dogg)

U.O.E.N.O (Rocko, Rick Ross, Future)

It’s So Easy (Guns ‘n’ Roses)

Talk Dirty (Jason Derulo, 2 Chainz)

Bitches ain’t Shit (Dr. Dre, Snoop Dogg)

Love Game (Eminem, Kendrick Lamar)

One Less Bitch (N.W.A)

Arms Around You (XXXTentacion, Lil Pump)

I Love It (Kanye West)

And there are many many more. Any of the above songs would be horrifically unacceptable and not tolerated on 1940s radio. But now they’re perfectly acceptable as they never made the news about how degrading they are to women in light of the #MeToo movement.

I hope this has enlightened the people who like to twist things to fit their own agendas (regardless of historical context), as well as those who like to blindly jump on bandwagons without doing their own research first.

All in all, listen to what you want…take it as you want…but don’t get pissed off when people point out how wrong you are and how hypocritical you are if you listen to any of the above songs or others like them.

In regards to the recent Avengers: Infinity War Piracy…

For those who love to watch/make pirated films, you should probably think twice. I get it, yes the stars and directors and studios make millions to billions of dollars. But that still doesn’t give you the right to steal. Not EVERYONE in the movie industry earns 6 or 7 figures. Some crew members earn $70,000/year which evens out to just under $6,000 monthly. And that’s probably before taxes. And only if the studio you work for can afford that. So you are stealing from them as well and their families.

It’s the theatres who’ve jacked up the ticket prices, and that’s because of you. The pirates. See, the money you pay at the theatre goes to the employees who give you your ticket and make sure the theatre is clean (or relatively) and who serve you your snacks and beverages. It goes to making sure your screen and sound work properly (so your pirated films look nice). To making sure the projector is up to date and they can replace parts if they need to. But if your argument then is how much money the theatre brings in, let me tell you this.

Someone somewhere will look at what YOU have and how YOUR house looks and say “pfft, they drive that kind of car” or “they live in that type of house in this type of neighbourhood. They can afford it..”…and break in and rob you. Would you just roll over and take it? No! You’d call the cops. You’d rant and vent about how much hard work you do to earn what you have. Well guess what?! THE SAME IS TRUE FOR THOSE YOU STEAL FROM. Piracy is a FEDERAL CRIME. They can charge you thousands in fines and you risk jail time. The movie industry has to deal with roughly a 3-4 billion dollar loss from piracy each year. Just yesterday, Avengers: Infinity War hit just over $1 billion. So think about that.

I get it. I get it. You’re stealing from the rich and giving to the poor. No. Sorry. You’re not Robin Hood. You’re stealing from people who may be trying to make ends meet (crew members, movie theatre employees). It’s not cheap to live where they live, but they are following their passion. Why would you make it harder on them to do that? Just because you want to make money off their work.

Films take a long time to make. Some can take 2 years or more. After convincing a studio to fund you, it’s writing, concept art, pre-production, filming (which isn’t as easy as some think), and post-production stuff. It’s years of hard work. Long hours. Blood, sweat, tears. Frustration. Set backs. Unexpected budget cuts. Sometimes death. Delays. But hey, they make millions of dollars. They don’t deserve to make money for their hard work ALL THE TIME. Bullshit. Hard work is hard work regardless of the amount of money in your bank account. And honestly, the belief that all actors and actresses make millions each movie is a myth. Some make quite a lot, yes. But not millions. Only the well-established actors can make that demand.

The bottom line is that it’s never okay to steal from another person. Even if that person regularly gets paid a 7-figure salary. Theft is still theft. I know this post won’t end pirating, but perhaps it will make a couple people think twice about supporting or participating in it. For those of you who read this and it still won’t change your mind, don’t bother filing a police report next time you get robbed. That’s just hypocritical.

CONFIRMATION!!!

So on March 13th, I had my 5th chemo treatment. Prior to that I had another PET scan and MUGA scan. The MUGA scan came back great, my heart is still doing it’s job like a pro.

But the PET scan revealed…..nothing. I had no visible lymph nodes on my scan!!!! They all look like they are down to normal, invisible size!!!!!! This means my last dose of chemotherapy will be on April 3rd!!!! After that I’ll be able to get my port removed and eat RAW VEGGIES, FRUIT, and SUSHI!!!!! I am so excited and I feel like I am almost over this hill!! I’ll post the before and after pictures when I find them, the envelope is here somewhere.

2 left…hopefully

I had my 4th chemo infusion on February 20th. It went well, just like the others before it. And after I got the Neulasta Onpro attached to my arm.

However the nausea really got the better of me this time. As well as the bone pain from the Neulasta (thank god for heating pads). It’s expected and honestly, it could be worse. I haven’t thrown up once during this (knock on wood), and it used to be that most people would deal with that through the entirety of their sessions.

This past Tuesday, I had labs done and was ordered to stay home and take it easy due to them being low and prednisone causing temporary leg swelling. It’s normal, but I need to listen to my body when I’m tired. Frankly, I dreaded taking a week off from work, but some people can’t even get out of bed. So I am thankful that I can still work. A huge shout-out to my boss who is allowing me to work from home for a bit so I can still get paid. Have i mentioned how awesome my bosses are and how lucky I am to have this job?

Since I’m near the end of the infusions, I have been scheduled for another PET scan and another MUGA scan. Hopefully things will be good, which the doctors think they will, and I will be done with this at the end of April. If not and I have to go until June, that’s okay too. It can be much worse.

On a lighter note, I’m looking forward to all the hair styles I can try out now. My plan is to grow my hair back out, so I won’t get it cut other than just a shape up when it grows out (a pixie cut when it’s long enough…1940s when I hit that length) just so it stays healthy. Perhaps I’ll dye my hair to match Daenerys Targaryen’s when it’s long enough? Besides, if I hate it, I can just shave it off again and it will look awesome.

Half way there…hopefully

So I had my third infusion on Jan 30th, and it went pretty well. I was unable to take my Varubi (anti-nausea meds) due to a sudden copay I had on it (despite being told earlier that day that I DIDN’T have a copay). Anyways, I informed the nurses at the clinic (ALWAYS DO THIS IF YOU ARE UNABLE TO TAKE A MEDICATION PRIOR TO CHEMO!!! It may have to be postponed until you can take the medication and that is OKAY!) but they said it was fine and I could still get my infusion. The anti-nausea injection they give prior to chemo helped, but it did eventually wear off later that night.

The nausea is irritating, I’ve ended up missing an additional day of work due to it. The Neulasta shot is a god-send, it’s great being able to have my WBC where it needs to be. But, the bone pain that accompanies it is the worst. I got permission to take Tylenol though (again, ask permission to take certain OTCs, you don’t want to take something that will screw with your treatment).

I have been told to take it easy, don’t over-do it, and listen to your body. That’s what I’ve been doing. My counts are great, the PA at the clinic didn’t feel any lymph nodes, my body is doing it’s job pretty well. The PA said she would discuss with the other doctors when to have me get another PET Scan, perhaps at the end of February. Fingers crossed that the end of April will be the end of this 🤞🏻

Neulasta Onpro

So I got the Neulasta Onpro device put on yesterday after my chemo session ended (2 down, 4 to go!!). The nurse applied it to my arm (but you can have it put where it’s comfortable), and explained that I’ll hear a tone, there will be a flashing yellow light (both of which soon happened), and there would then be a snap like a rubber band hitting your skin (which is exactly how it felt…it startled me). Then it would be a slow, flashing green light. After that, it would remain on for 27 hours, which means that my Neulasta would be injected at around 6pm.

Around 5:57pm tonight, there was a tone. It’s actually a funny story. I was taking out the trash and had just closed the lid when I heard beeping. Confused, I looked around. What was that? Where was it coming from? Did I throw something away that was going off? I checked my Apple Watch 3…no not that. OH! My device!! I looked and sure enough, the green light was blinking quicker. At around 6, there was a series of clicks that lasted for about 45 minutes. I had my mom check the level on the device to let me know how much longer I had left.

There is some discomfort on occasion, but it’s not too bad. Some leaking, but that’s normal. Not long after my mom checked and said it was right on the empty line, there was a long tone and then the light was a solid green. Time to remove it! My mom helped me remove it, it wasn’t too uncomfortable. Like removing a large bandaid. And the needle is a flexible plastic. After that you can just toss it in the trash.

Observation

So apparently there have been a lot of questions at my job regarding me wearing a hijab. None from my co-workers, since they all know, but from the patients who frequent the clinic for appointments or allergy shots.

Some have just been curious, and to those I’ve explained the reason behind my choice. They’ve been sympathetic and expressed hope that things go well. Others have been quite judgemental, ranging from a disgusted look on her face and another to actually passing a post-it note with the question of my religion written on it, like it’s high school again. To those people, my co-workers have stood up for me, since these people do not ask me directly (I guess they don’t want to offend me…). One was told bluntly that I have cancer and another was told that perhaps I’m simply cold (it has been in the 20s – 40s lately).

I have told my boss that I don’t mind them explaining that I am under going chemotherapy for lymphoma, just to those who ask. That will take care of those genuinely curious and those who are judgemental. Frankly, I’m shocked that some people have expressed such interest (other people I knew to be judgemental from the beginning). Are we that hurting for Muslims (or any other headscarf wearing religion) in my small town, that one woman wearing a hijab suddenly becomes almost like a novelty?

Frankly, so what if I was Muslim? How would that impact them personally? So what if I decided to convert, or perhaps I was always Muslim and just now decided a hijab was right for me? But hey, what if I was Jewish? Or Sikh? Hindu perhaps. Or maybe…CHRISTIAN (which I am…). All the religions I listed have members that wear head scarves or veils (either by choice or requirements). The Apostle Paul even says women need to have their heads covered if they don’t want to be considered shameful. I believe there are actually two mentions in the Bible about women keeping their heads covered.

If this is something that young women of any head scarf wearing religion has to deal with, then I’m sorry. Being stared at all the time or have people question your religious choices is frustrating. I am lucky to have a support group of friends and family who respect my decision to wear a hijab. It keeps me warm, since there isn’t hair up there to do that job. It protects that sensitive skin from the sun. I’ve always been super sensitive to the sun, now it will be ultra-super sensitive thanks to Chemotherapy.

People will probably be talking again when my hair starts to grow back and I can rock a buzz cut. “Omg did she convert and then change her mind??” This has been, and will be, an interesting social experiment in a way and I look forward to questioning some people if they ever get the courage to ask me directly about my choice of head covering.

Priorities

I understand that Chemotherapy medications have come a long way. Today they are nowhere near what they used to be. The nausea used to plague so many patients to the point where they lost a ton of weight from throwing up and not having an appetite. It made people so miserable. However, there is one place where I think they need to improve more and spend more consideration on.

Hair loss.

Now before you go and say “it will grow back”, trust me, no one knows that better than me. But, I will ask you this: have you ever been told your hair will start falling out in clumps over the next two weeks after you start chemo for cancer? Maybe you have. But perhaps you have not. Perhaps you have never been told the words “you have cancer”. That in and of itself is terrifying and depressing. It’s shocking and confusing. And then being told “oh and the drugs we are going to use to treat you is going to take your hair too”.

Hair is the source of self-expression for so many people. It’s a source of beauty and confidence. Sure, some people could careless about losing their hair, others (like me) are devastated. I already have low self-confidence as it is, being told I will also go bald after my hair falls out in clumps was the shit icing on the crap cake for me.

I wish those in charge of tweeking chemotherapy drugs to make people more comfortable, took into account that balding isn’t comforting. That waking up to clumps of hair on your pillow isn’t comforting. That showering or brushing your hair, seeing more and more strands going down the drain or coming off on the bristles isn’t comforting. I went ahead and was proactive, I shaved my hair off. My long, curly hair that I was just starting to love (after a childhood of hating it), sectioned off, cut, and shaved. I did donate it, so perhaps someone will have a wig of my hair soon. That made me feel better. I decided not to deal with the clumps. Not everyone can do that. I will have to shave it again soon since my hair apparently grows back quickly.

But here’s the thing, I shouldn’t have had to do that at all. If scientists could understand that the knowledge of keeping your hair will be such a comfort to cancer patients. Yes we can wear wigs, some are super convincing now. But we shouldn’t have to. They are super expensive and not everyone has friends who will let them borrow the good, convincing wigs. Yes we can wear scarves, I myself have chosen to wear hijabs. They keep my head warm and will protect it from the sun. Chemotherapy makes your skin super sensitive to the sun, something my skin already is. Now it will be super-ultra sensitive and the top of my head has never been exposed to the sun.

But.

We shouldn’t have to.

I know it’s such a trivial thing. Hair. It grows back. It’s just hair. At least you won’t be nauseous. I don’t give a shit about nausea. I can handle that. There are anti-nausea meds that work. I’d rather be nauseous than being forced to be bald. Yes the chemotherapy saves lives. Yes, it is nice to not be as nauseous than I could be. But can’t they just spend a little more time and figure out to keep the hair from falling out? That would be such a comfort to people to know that they will keep their hair and they can keep their treatment private. They won’t have to spend money on good wigs, scarves, and caps. They won’t have to risk going outside and have it scream “cancer patient”.

And actually, there is always a chance (however small), that your hair WILL NOT grow back. There are people who’s hair follicles can’t handle the chemo and die. So there are people out there who have permanent hair loss due to chemotherapy (sometimes radiation is combined with the chemo). So perhaps before saying “it will grow back”, stop and think. It may sound flippant to the person you are saying it to. Especially if they know you’ve never been in their shoes. Also, think about that small percentage of people whose hair never grew back after chemotherapy. I know you mean well, as it’s better your friend’s life is being saved, but understand that it’s life changing being told you have cancer out of the blue. Losing a part of yourself that is a source of confidence and self-expression adds stress on top of that news.

When I shaved my hair off, I cried. My hairstylist cried the whole time she shaved it off. My mom cried and the friend who went with me cried. It was hard. Yes, it was freeing and I’m deciding when my hair leaves, not chemo, but not everyone is strong enough to shave their head. I know one other person who is strong enough to do that (and yes, it is different when you shave your head for the military). You have a choice on the shortness (somewhat). I don’t have a choice. My friend doesn’t have a choice (not if she doesn’t want to be frustrated with herself).

If there are any scientists out there who work on chemotherapy drugs, please please please start finding a way to save lives and allow people to keep their hair. Men and women. It would make having to deal with getting chemotherapy so much easier.