Category

Chemo

Advice to the newly diagnosed

Advice to the newly diagnosed

Recently, I had a close friend who was diagnosed with cancer. This was actually a first for me. This is a real life friend who has cancer – like, not a friend who I met on social media after my diagnosis. I have plenty of friends who have fought cancer, I just haven’t met 99.9% of them!

(Side note: My social media cancer friends — can we all get a cancer conference together? Or maybe we all just meet in one city and go out for a weekend where we drink cocktails and look hot AF and show the world that cancer doesn’t have shit on us?!? Seriously, I think this needs to happen.) (Update–We’re also burning our wigs in a giant bon fire.)

Back to the main topic – I told my friend “welcome to the club!” because he’s now my cancer buddy! Also, he’s the same age as me so he’s joining the young cancer club which is an elite few 🙂

So we pow-wowed a bit and talked about cancer. He told me that his diagnosis was very eye opening, because before it happens to you personally, you kind of tend to make broad generalizations about cancer. When I say personally, I mean either YOU have cancer or your close family/friend does. And when I say “broad generalizations” I mean that most people don’t know jack shit about cancer. The unknown is what causes panic, fear, anxiety. The panic causes us to Google. The googling causes us to panic more.

So in light of our realization that most people don’t know shit about what it’s like to have cancer, I wanted to share a few things. For the newly diagnosed (whether it’s you, a friend, or family member) 7 little tidbits of advice and what to expect — because I wish that I had somebody who told me these things.

  1. First of all, when you’re first diagnosed you’re fucking scared. (Duh, you know that) You basically start planning your own funeral.
    I want everybody to wear white, not black, drink vodka sodas, eat Royal Farms chicken, and have Elton John play Tiny Dancer. Oh, and blast my ashes into outer space in a pink sparkley rocket.
    As cool as your funeral plans may be, just stop it. You probably went on the internet and found the worst-of-the-worst cancer diagnosis scenario and are now convinced that you’re going to die. Stop it. Step away from the Google machine. Questions? Call a doctor, not WebMD. The internet is not your friend; the internet is the boy in 2nd grade who stole your Lunchable.
  1. Secondly, Cancer is (usually) more emotionally taxing on your loved ones than it is on you. Why? Because YOU (as the cancer patient) know that you’re inherently going to be fine. Sure you will freak out at first, but eventually, after you have sat with the doctors, after you know what a PET scan is, you know what your options are. You already threw those imaginary funeral plans in the invisible trash because – guess what— today more people are living from cancer than dying. But most people don’t really seem to grasp that. Especially your crazy [insert emotionally unstable relative here] who is so completely incapacitated with worrying about you that you find yourself always calming them. HELLO?!… This crazy relative doesn’t have cancer, but that doesn’t stop them from hyperventilating in Home Goods because they found napkins with pink breast cancer ribbons on them.

    So the neurotic relatives are one thing — but whoever your caretaker is during this time (husband/wife/mom/etc) — be extra nice to them. It’s the hardest on these people. They may not be the ones that are sick, but they see you at your worst. The burden that they carry as your lifeline during your darkest hour is heavier than they are ever obligated to endure. It’s an emotional crusade to stay strong, to be the rock, to tell white lies to family when they ask how you’re doing (Doing great!). When really… you spent the past two nights throwing up like you did in your high school/college party days after you drank enough “jungle juice” to drown an elephant. The caretakers are our unsung heroes.

  1. Third, prepare for a shitstorm of questions. You’re going to get questions and comments from anybody and everybody you’ve ever met (like that annoying girl you sat next to in freshman Poly Sci who now has enough babies to start her own little league team), and they are going to be so stupid/invasive/absurd that you’re going to whisper to yourself “whatttt the fuuucck” more times than you can count. Because they will ask things like: “Oh, so I guess now you can’t really have kids, because you can’t breastfeed right?” I’m not sure this person knows how a baby is born. Perhaps an anatomy lesson is due. “So what does cancer FEEL like? You could feel it right? It hurts?” If I could feel cancer… I would have been diagnosed a lot sooner, ya genius. I had a tumor, and yes I could feel that, but cancer doesn’t really have a feeling. Its symptoms are rarely noticeable which is why it goes undiagnosed in most people. “Oh you’re not going to die, the prognosis is good, right?” Just… never, ever ask a cancer patient about their life expectancy unless you are a doctor. Well, even if you are a doctor, you’re still running a high chance of getting crane kicked in the face because nobody wants to talk about an appraisal of their time left on Earth like we’re chit chatting about sports statistics. If they aren’t talking about it, don’t ask about it. Don’t mention dying. Ever.

    So like I said earlier… please understand that most people are just misinformed, not malicious. Think about it… before your diagnosis, did you know that there were different combinations of chemo? Did you know that not everybody needs chemo, and that not every type of chemo makes your hair fall out? Did you even know what radiation is?

    I admit. I didn’t know any of this. In my stupid brain I thought that people who got cancer usually died, or else it must not have been that bad. I thought that there were “good kinds of cancer” that were easy and similar to getting a virus treated with a Z-pack. I thought that people got cancer as a result of living an unhealthy lifestyle. Wrong Wrong Wrong.

  1. Fourth — know that no matter what kind of cancer you have/had… the psychological effects remain the same whether its stage 1 or 5. Maybe you had stage 1 and the cancer was removed with minor surgery and no further treatment. Maybe you had stage 4 and cancer riddled your bones and the crevices of your insides. The self loathing and guilt that comes with a cancer diagnosis can be crippling. It fucks with your mind. Why did this happen to me? Was it because I [insert any bad vice/behavior here]? Did I cause this? Too much bacon? Not enough green tea?
     
    You will constantly ask yourself “Will it come back again?” With a cancer diagnosis, you also get the pleasure of the grim fucking reaper snagging a permeant home in your subconscious. This grim reaper visits in seasonal times. He’s lounging next to you at the pool or standing across from you at the bar waving — as a friendly reminder that  you could die. “Howdy ho neighbor! Just here to ruin your day!”
     
    The fear of cancer returning. The anxiety of it recklessly colonizing and disabling your body in an unexpected homecoming. It’s a paralyzing thought that can hit you at startling moments. Death stalks you.
  1. You don’t have to tell everybody. Refer to point 3. It’s up to you. I thought I had to tell everybody. You don’t, and not everybody needs to know you have cancer.
  1. Time will fly during this scary period in your life. Which is good. It’s not one of those times you really want to “stop and take in the moment” like they tell you at your wedding. Your diagnosis will be a flurry of appointments and treatments. You’re constantly looking towards the next date on the calendar, next doctor, next chemo, next follow up. Before you know it you’re sitting here 1.5 years later with actual hair on your head, eyelashes, and new boobs. If you had chemo like I did, you’ll probably not remember a lot of the specifics during the hectic times (chemo brain – see previous post). The memories will float in your brain like a clouded drunk memory. Pretty neat-o!
  1. You’re going to be okay. Cancer taught me that even if I do…die…someday from cancer… that will be ok too. I’m not afraid to die. It will make you brave in weird ways you can’t understand. It makes your family brave. It makes relationships stronger. It makes your faith stronger. You’re going to be fucking fine! Calm your tits.

If you’re newly diagnosed, or just have questions feel free to ask me. I have plenty more unsolicited advice! Even if your questions are weird and hopefully just mildly offensive that’s fine too. I want to educate people. There are too many things that we don’t ask or don’t say to each other because we’re afraid or embarrassed. Get over it, talk about it. Put an end to this stigma that cancer is a death sentence or that it’s contagious (oh yeah, forgot to mention I’ve heard that question too).

Be nice to each other, stay healthy. Ciao betches.

The Struggle is Real AF

Chemo brain is a real thing.

It’s 3:40 and I have an appointment at 4, and it’s going to take me at least twenty minutes to drive there in traffic this time of day. I grab my Louie bag. Toss in a bottle of water, my wallet and my makeup bag as I run out the door and hop into my car. Turn the car on. Put the car in reverse. Go to grab my phone to look up directions to my appointment. FUCK. I left my phone on the kitchen counter. Park car. Turn off engine. Run into the house like a crazy woman with a swarm of bees chasing her.

Just a normal moment in my life. This type of stuff happens every day. I. Forget. Everything. I would forget my own birthday if I didn’t have to write it on doctor forms all the time.

I’m not going to just any appointment either, I’m going to see a psychiatrist. Because I literally can’t deal with this sorry excuse for a brain anymore. I give up. I gave up. I tried for about 9 months to tell myself that chemo brain wasn’t that bad and that it didn’t affect me. In those months, I forgot birthdays. I forgot important doctor appointments. I forgot which airport I was flying out of. I forgot to pay a hospital bill. I forgot to call people back. I went to the grocery store to buy coffee and I came back with a cart full of food except for the coffee.

The last straw came when I started to notice that my forgetfulness could sometimes hurt other people. I was a half assed friend and person in general and I’ve never been that way until now. I knew it wasn’t who I was. My brain was like a generator being powered by a single potato.

I keep saying that I was going to see a psychiatrist for a few months, and again, I kept forgetting to make an appointment. Or I’d yield an anemic attempt to look up a local psychiatrist and get frustrated and give up. I tried taking “brain pills” like focus factor. I tried green tea, green caffeine, normal caffeine, gingko biloba, B vitamins, unicorn tears, vampire glitter, etc.

I was still driving the struggle bus all the way to struggle city. Sippin’ on that struggle sizzurp.
(sorry, you get the point)

But I finally got an appointment (which was not covered by insurance of course) and saw a psychiatrist. I am not a huge cheerleader for ADHD drugs like Adderall and Vyvanse but I knew I needed something. I was so frustrated. I knew I needed something to help me focus.

I met with the psychiatrist. I had never been to one before this moment in my life. It was literally verbatim like the movies. I was kinda excited! He had a mahogany paneled office with a large full-wall bookshelf stocked with leather-bound books, encyclopedias and old airplane figurines. He had a large leather couch and one of those chase lounge/bed thingys that you’re supposed to lay down on and cry and tell your life story. So chic! His desk was a huge solid mahogany one like the Prezzy has in his oval office. He didn’t have a computer or a laptop or even a phone on his desk. He had a pad of blank unlined paper…and …. get this… a fountain pen and an ink well. He dipped his pen in the ink and started writing his notes in cursive on blank paper. Fancy as fuck huh. He was old school. (he was also just plain old — he has been in practice for 57 years)

After I told him my life story and history, he said that it appeared like I had the inattentive type of ADHD. He thinks I probably had always had it, but that chemo had just exacerbated the symptoms. I figured that much. Growing up my friends didn’t exactly call me “Snoozin” for my sharp attention span. I had always been the type who quietly listened to other people speaking as I daydreamed about something else and their words fluttered in one ear and out the next.

Friend: Beep Boop Bap Zing Ping Pong Potato Tomato

Me: Wait did you just say you’re allergic to broccoli?

Friend: ……. What? No I said my son just stared playing hockey. And his allergies are terrible.

My brain: [ ting-tong-ching-chong fa lalalala ]
Me: Oh yeah ha-ha I was just kidding… Hockey, sounds neat-o. **insert awkward smile emoji**

Inattentive ADHD is descried as having at least 6 of these symptoms:

• Not paying attention to detail
• Making careless mistakes
• Failing to pay attention and keep on task
• Not listening
• Being unable to follow or understand instructions
• Avoiding tasks that involve effort
• Being distracted
• Being forgetful
• Losing things that are needed to complete tasks

So I left Doctor McFancy’s office with a written prescription for Adderall time release. Has it been working? Yes! Do I feel different? YES! Doesn’t Adderall make you feel jittery or hyper? No, not if it’s prescribed correctly and it’s working the way it should be. I feel great. It doesn’t keep me up all night. I take it when I wake up and it starts wearing down at around dinner time. Will Adderall work for everyone? I have no idea, I’m not a doctor although I’d like to have a doctor’s salary.

So it’s Monday and I’m just starting my second week on it. No complications or side effects so far. I’ll let you all know how it works long-term. There are no known side effects or interactions with Tamoxifen or any increased breast cancer risk.

I feel like I am normal. I am no longer a lazy slug with a potato-powered brain!

I want to note that medication may not be the best solution for everyone experiencing chemo brain. Certain chemotherapy drugs are also shown to have more damaging effects on cognitive function than others, as are certain hormone therapy drugs. Chemotherapy given in higher, more concentrated dosages (which is what I got) also has shown to have worse long term effects on cognitive functioning.

Hopefully, in my lifetime, we will see the day when chemotherapy is an outdated treatment. Although it does save lives, chemotherapy’s negative affects are garnering more attention and causing people to turn away and seek alternative therapy.

It’s just an endless cycle of pharmaceutical drugs. Doctors administer outrageously expensive chemotherapy medicine to kill cancer. Patient needs more pharmaceutical drugs to cope with chemo. Nausea drugs. Anxiety medicine. Pain pills. And then the long-term effects present a need for more expensive drugs to treat lymphedema, chronic pain, chemo brain, etc. Doctor visits, private psychiatrist sessions, surgery, hospital stays, physical therapy, expensive lab tests and scans.

Money, money, money.

I don’t know. If you regularly read my blog, you know that I’m usually very optimistic. But I do sort of feel a little bit defeated because I had to turn to another chemical to make myself feel normal again. It seems to have solved my problem for the time being, though. So for that, I am grateful. It just makes me think, what the fuck is taking so long with this cancer cure? If nobody profited off of all this medicine and treatment, would we have found a cure sooner?

Abso-fucking-lutely.

Deep thoughts. Thank you Adderall, I guess.

For more information on symptoms of chemo brain click here:
http://www.mayoclinic.org/diseases-conditions/chemo-brain/home/ovc-20170224

S

Eyelash extensions can go to Hell

It’s a love-hate relationship. Like, right now, I hate them. I got eyelash extensions the first week in April, when my eyelashes were presumably long enough to have extensions. The salon I went to was overjoyed to have me, and my $210. YES, that’s right: $175 plus I gave a $35 tip. Plus… I went back twice to get them “filled” for $80 each time. Round of applause for me. Again, I’ve found something stupid that I’ve wasted my money on. If you haven’t noticed, I am suffering from extreme buyers remorse at all the things I could have spent my money on instead of dead eyelashes.

I am going to refrain from listing the salon’s name, because truthfully I don’t think it was THEIR fault. I don’t think that the lash technician had actually ever put eyelash extensions on a chemo patient, so I don’t think they knew what to expect. I think that they just hoped for the best and swiped that credit card faster than a vegan at Whole Foods.

The first time was great, she placed small, thin individual lashes on my lashes. It basically just made them longer, which is what I wanted! Four weeks later, I had them filled and there was a new lady… she put on larger cluster lashes because she wanted to give me a “cat eye” look. I didn’t ask for this cat-eye look, but when she said “all finished!” in her upbeat Ukrainian accent and popped a mirror infront of my face, I couldn’t help but be impressed. Hot damn, momma’s lashes looked good!

Those lasted about a week before they started rapidly falling out and taking out my real lashes with them. Soon, I had large gaps and awkward chunks missing in my lash line. Hot damn, momma looks like a HOT MESS.

I went back in to get them filled by the same girl who originally did my lashes. She explained that the reason they were all falling out is because eyelash extensions are basically “like putting a really heavy backpack on a really small kid… the weight is too much for him to carry and he can’t grow if he’s carrying so much weight.”

**Sighhhhh**

Well since I was already there, I figured I’d try it one more time. So she tried to help me out. She put on really small, thin lashes very sparingly and tried to just make them look normal again. I barely lasted three days before over half of them had fallen back out. My lashes had clearly had enough. They were exhausted from carrying these heavy fake spears of vanity and gave up on life.

**Moment of silence for all of my fallen lashes**

By day 6, the extensions were all gone. Every. Single. Lash…. was now somewhere in my Dyson vacuum laying solemnly in a grave of gray dust and pet hair.

The point of my sad sob story isn’t to make you feel sorry for me and my stupid fleeting eyelashes_before_afterattempts at vanity. I actually just wanted to send out a warning signal out there into the cancer community to anybody considering doing this as well. I really didn’t know this could happen. I thought I did enough research prior to my decision to get the extensions… but I didn’t look hard enough or talk to enough people. So heed my warning betches considering the pros and cons of these fluttery felons!

Yesterday, I told my plastic surgeon about my sad eyelash story. Without sympathy or regard, he told me to take Latisse like he had prior advised. OK I get it, nobody feels sorry for me. I impatiently sabotaged my normal, healthy growing eyelashes with these fake lash-slaying harpoons on my lids. Whatevsssss. LIVE and LEARN people. Live and learn.

My next plan of action is that I am trying castor oil on my lashes… which has been advised by numerous other cancer patients… and I’m going to suck it up and buy the Latisse. Which actually costs less than the extensions. For those wondering… castor oil is not motor oil! It’s from some sort of bean… a …castor bean? I assume. Yes. I Googled and it’s a bean. Also, my Google search revealed that these beans are also commonly used by children in Brazil as slingshots. Soooo there’s that.

If anybody has any other things you advise, please let me know! I am open to LITERALLY ANYTHING. I am even rubbing slingshot bean oil on my eyes for fuck’s sake!

I just wanted to end this post on a side note about hair. I’m really missing my long hair lately. Many of you who know me, know that I also like to “twirl” my hair while I’m working or thinking. Can’t do that now, and it’s driving me bananas So if you’re having a bad hair day, or think you hate your long hair and want to “pull a Britney Spears” and shave it all … Kindly shut the fuck up and go rub some oil in your eyes. HA! Ok ciao betches.

It could never happen to me.

Everybody thinks that it will never happen to them.

Cancer is a shady bitch like that. Imagine you’re just jogging (or walking) along your usual proverbial path… it’s such a routine that you could probably do it blindfolded. Except this time you slam into an elephant. “Wait, how the HELL did I not see that elephant?! Elephants aren’t even native to this country, why the fuck is it here?! Hello did somebody lose their …um… pet elephant?” You had your head down and you were flying down the path like a loose puppy with your ears flapping in the wind. You never expected to run into an elephant because, seriously, that only happens on an African safari or something right?

That’s exactly how cancer is. You didn’t see it coming, you weren’t looking for it, and you NEVER thought it could happen to you. It happens to other people maybe, but not you. You’re heathy and you’re heading down your path full speed into life’s bliss. Just heed my warning betches and don’t be naïve and dumb like I was.

Over two years ago I started following a girl on Instagram who was 24 and had breast cancer. I remember once I found her I was paralyzed on the couch, stalking her pictures for about an hour saying “what the fucccckkkkk” about a hundred times under my breath. As I scanned over images of her bald head and scarred body I remember exactly how I felt; terrified, horrified, amazed, despondent. How could somebody so young have breast cancer? In my lifetime, the few people that I knew who had cancer were older; in their 50’s and beyond. I couldn’t imagine being a young girl and having to put your life on hold to FIGHT for your life. I was even terrified to have my blood drawn (I used to pass out) so I couldn’t comprehend going through chemo and multiple surgeries. I was completely heartbroken going through her pictures. But as I continued to follow her story I realized that she was not sad or miserable, she was optimistic, happy, grateful. Amazing! How could somebody who has been dealt a shitty hand of cards in life be so content and cheerful?
Keep reading…

I know that God was looking out for me back then. Somehow in the divine tapestry of the universe I found her Instagram account and was given a foreshadowing into my own future. Of course, I had no idea back then, but now I am certain of this. When I was diagnosed, I remembered her and it helped me to know that I wasn’t alone, and that I needed to be optimistic and unafraid. At the same time I discovered her Instagram, I had the small lump in my right boob. Even after seeing the 24 year old girl with breast cancer, I was still disavowed with the notion that I might have cancer also. I used any excuse available. “Well my doctor said it looks like a fibroid, and so I trust the expert’s opinion.” I didn’t trust the gut feeling that was nagging at me. Also at that time, my mind was clouded as I was divorcing my ex-husband so I didn’t even have a spare brain cell left to consider the possibility of cancer. I was just certain that those things don’t happen. Nobody gets dealt a hand that includes an unfaithful, narcissistic husband AND breast cancer at 28. That shit DOES NOT happen… right?

Well, whatever boo-hoo it happened. I tripped over the elephant because I didn’t believe that elephants existed. I ignored the signs. I didn’t listen to my body or my intuition. My point is: don’t let that happen to you, safeguard your life. You can still run full speed ahead, like I am doing, just keep your head up and pay attention to the signs along the way. If you have family members who have cancer, you especially can’t think that it couldn’t happen to you. My father’s side of the family carries the ATM genetic mutation, which we only recently found out in light of my cancer diagnosis. I’ve encouraged them all to get tested for this mutation. If you carried a cancer gene wouldn’t you want to know so you could prepare and defend yourself from this horrible disease? I wish I had known before it was too late, because now I’ve lost my boobs and my hair. So please don’t be naïve and think it can’t happen to you, cancer can happen to anybody. Please visit your doctor regularly and speak up about any pains and issue, no matter how small. And please for the love of God get a mammogram if you’re over 40 and a biopsy on any breast lumps no matter how old you are. Either way, when you get those results you’ll either be relieved that you’re in the clear or relieved that you’ve caught the cancer before it can do any damage.

Also, the Instagram profile was @NalieAgustin if you’d like to follow her!

This is what cancer really looks like…

It’s not a pink sparkly ribbon. It’s not pretty. It fucking sucks.

I had my port removed on Tuesday and it’s gruesome. My plastic surgeon removed it and he was going to sew it shut and make the scar look pretty, but when he got in there he had to remove a lot of scar tissue and infected skin. He wasn’t able to close the wound because he was worried that the infection would essentially be sewn shut in there and it would cause an abscess. FUN.

So now I have a gaping hole in my chest where I can literally see my own flesh. To be honest, it looks worse than it feels. It doesn’t really hurt, it doesn’t bleed. I just slap a giant band-aid over it every morning and that’s all I’m supposed to do for now. It’s supposed to take about 6-8 weeks to heal completely. So without further adieu… if you’d like to view these pictures please click the link below. Warning: if you’re a weak bitch and you’re grossed out by blood then don’t look!

View the pics…

infected chemo port removal

chemo port infected