Occupation:Brain Cancer Warrior by day, in bed by 7:00pm
Geesh, I get it. No one likes an unconventional post in the jungle and I apologize if I made my followers uncomfortable. I don’t like posting negativity anymore than you like reading it but I’m also told keeping it in doesn’t help either. With that said, you’ll be happy to know I have obeyed my doctor’s strict orders to commence oral birth control immediately and therefore I am no longer in jeopardy of getting kicked out of the study and don’t have to hear his outbursts about him losing his license. Some of my critics and maybe the guys may be thinking, what’s the big deal? My argument here is that I try to limit the amount of drugs that go into my blood stream especially when it’s purpose is for something I can manage myself. There was a time in my life, a few consecutive years in fact, where I was on ZERO prescription medications and I was very proud of that and when you take into consideration the abuse my body had previously been through that says a lot. So if I shared with you the abuse my body takes these days maybe some of you would sympathize with me and understand why more is not always better!
So I took the WebMD versions of just SOME of the medications I’m currently on as part of my cancer-fighting, chemo-side-effect shielding regimen and displayed the side-effects the FDA is supposed to warn patients about who take these prescriptions. If you notice, I decided to cover up the names of the drugs with clever disguises because I feel it’s too personal to share these toxins I ingest daily nor is it in the best interest to provide my followers with leads on this information should after reading the pleasurable side effects any one of you feel inclined to pop the capsules nightly too.
So… who’s hungry? Better yet, who still thinks I was out of line for objecting to omit a prescription medication from my body that a) does not aide in the fight against my cancer and b) does not reduce chemotherapy side effects? Believe me, I understand the obligations of drug companies to list all known side effects and not all patients report or experience these but let me tell you, once you start mixing up cocktails with four or more ingredients, you are sure to wake up with some hangovers and you can bet this is an accurate summary of what to expect while ingesting such cocktails.
Not pictured above are the side effects of the chemotherapy trial drug I’ve been taking since July because it’s not an FDA approved drug and the side effects are being studied by what’s reported by the patients. Technically, myself and a few other people at my clinic whom I haven’t met are the guinea pigs and if my Doctor and his team were to actually listen to me rather than just write off my side effects as “hormonal” and “recent cohabitation” issues, then us lab rats would be the ones to influence the Side Effects category should this drug one day get approved by the FDA. So, like I said, let’s say my team were actually writing down the side effects I was relaying to them during weekly/monthly checks ups rather than doodling on their notepads, the FDA labels for, let’s call this drug FML-RX would read as follows:
Patients taking this medication have been known to report migraines, severe fatigue, loss of energy, anxiety, depression, stomach pain, constipation, palpitations, tinnitus, hearing loss, and memory loss. Call your Doctor if you experience any of these side effects. Remember that your Doctor has prescribed this medication because he or she has judged that the benefit is greater than the risk. If ‘memory loss’ was included in the side effects of this medication, well, forget it.
The following, less serious side effects have been reported in some patients:
-Fear of germs can significantly impact patient’s life, and patient is known to do crazy things while cleaning such as put broom away in refrigerator.
-May develop fear of phones at work. For example, on multiple occasions makes calls to businesses and begins conversation “Hello this is Carly who’s calling?”
-Sensitivity to light can worsen headaches. If patient does not live alone or cohabit with a vampire this can lead to evening arguments.
-Confusion can cause patient to show up at wrong restaurant on Valentine’s Day. ‘Manhattan Inn’ sounds like ‘Brew Inn’
-A rare condition has been reported in some patients known as ‘Barttitude’ or ‘Party Pooping’. This condition was discovered by close relatives who recognized that patient becomes quite miserable and cranky when dragged out to bars particularly in the evening hours (any hour after 5pm). Due to patients loss of hearing, inability to enjoy an adult beverage, and severe fatigue, bar scenes do not bring out the best in patients prescribed FML-RX. Just leave her at home.
Although the side effects seem dismal and debilitating, if this thing is working I am all for an FDA approval and hope that my honest feedback to the sponsors will make it to the warning labels. It’s about time the side effects on these prescriptions get to the point. One last thing to leave you with, don’t put manufactured crap in your body if you don’t have to. Make sure your doctor knows what’s best for YOU.
I found myself in the most ironic of situations this past week which also felt like being in the darkest hole I’ve ever been. It starts 12 years ago when I remember sitting in a doctors office as a 17 year old with my parents discussing the future of my fertility and options to pursue that would preserve my eggs in the likely event that the chemotherapy regimen I was about to commence would prevent me from having children forever. I don’t remember specifics but not knowing what the future held and the cost of these services it was not an avenue we decided to pursue and at the time my health was our priority.
I can’t say for sure if I’m infertile now after those years of chemotherapy, months of radiation, but I thought about it especially as I got older, and at times the realization was tough to take in. When I was finally “cancer-free-ish” I was able to start making my own decisions again and when it came time to determine what medications I did and didn’t get to put in my body birth control was a no brainer. I would act responsibly but I did not want to be on the pill. This is my body after all. I had already been prescribed several versions of the pill and even the patch as part of the requirements for an adolescent cancer patient undergoing chemotherapy treatment.
Fast forward to summer 2013. I was reading through my phase II trial consent and vividly remember flagging the section on birth control and reminding the nurse who was reviewing the consent with me that I was not on the pill. His exact words “oh this just means you can’t get pregnant while on the trial drug.” We moved on.
Fast forward to this past week. I sat in a doctors office similar to the one 12 years ago. This time, as a 28 year old, my doctor wasn’t talking to me like he wanted to help preserve my future eggs, no he was concerned he could lose his license if god forbid I got pregnant on this Trial drug and that if I didn’t agree to practice using a second form of contraceptive immediately, he threatened to take me out of the study, a study that could potentially be saving my life.
Yes I had brushed off my Doctor’s previous requests when he expressed his concerns 2 visits ago, but I had hoped that our honest discussions about abstinence, which is what many cancer patients have to deal with during treatment, would help my case. Yet he scolded me like I had betrayed him for something, or worse, made me feel like a promiscuous whore. I’ve lost one of the last things I felt like I had control of over my body yet again.
Isn’t it ironic.
Taking a trip outta the jungle this weekend. Hope to return rejuvenated and with happy posts.
Yesterday I gave my hair stylist permission to chop me up super short. She’s amazing and my hair grows really fast so I of course said “why not.” The final product was surprisingly much shorter than the time I first visited her after surgery when she gave me the pixie. At first I joked and texted selfies to honest recipients questioning if I resembled Jim Carrey from Dumb and Dumber but more accurately a Lego figurine? Both of which I had to google in order to provide you with visuals and on the first page of my Lego search this amazing side-by-side picture of Rihanna and a Lego dude came up! No joke. This just made my month. I better call Chutney before word spreads and Brooklynites start showing up at her salon requesting the popular Lego cut worn by local celebrities.
Before taking this incredible Rihanna turn, originally my blog post was intended as a Throwback Thursday entry because I think the last time my hair was this short was when my senior year high school yearbook photo was snapped (graduated in 2004 but photo taken in Fall 2003). Who knew that just a regular gal like me had unintentionally invented a hair style that would eventually influence a trendsetting pop star a decade later? What’s even more significant is that this high school look came less than one year after losing every strand of my hair during a junior year packed with chemotherapy treatment.
To my followers who have or are dealing with hair loss: I hope Lego Land is in your near future. The journey was incredible and you worked so hard to get there. You may not hear it enough or realize it at the time, but you are inspiring and influencing so many people along the way.
Pictured above: This is what happens when you let a cancerous concrete jungle inhabitant loose when the weather warms up to a gorgeous 55 and sunny. I dusted off my sneakers, took off on foot, alone, Spotify Radio Folk Station set, and headed toward Queens. Before turning around to head back home to Brooklyn I soaked in the east river skyline views which at this point NikePlus calculated I had walked over 1.5 miles. Needless to say, this hour I spent walking over 3 miles total was the most rigorous exercise I got since possibly before surgery. The entire weekend was gorgeous and both days I managed to wake up headache free. Coincidence, I think not? I can only hope the pattern continues.
Hold up… Not Cool.
Welp, as I suspected those spring days are not here to stay just yet and we must make the most of them if they do ever come back. For my fellow jungle creatures who can sympathize, this is what I feel we look like struggling to reach Spring…. :(