Occupation:Brain Cancer Warrior by day, in bed by 7:00pm
You are truly an inspiration to all Carly!!!
Thank you so much!! And thanks for reading my blog ;)
Yesterday was the one year anniversary of my 3rd brain surgery, June 3rd, 2013. Today I went on a walk to the Long Island City park in Queens and ended up sitting on a bench staring across the East River right at NYU Hospital where I had my 2nd surgery back in June 2003. My first surgery, only six months prior to, was uptown at Columbia and out of my sight but everything felt so close.
I got to know the city quite well as a teenager and as you can imagine grew to despise it. I never intended on moving here after college but job opportunities brought me to the city I grew to hate when I was fighting cancer. I settled in Brooklyn and it was love at first sight. As I’m sitting here staring at the skyline, all I can say is “you win.” It’s a complicated jungle over there but it helped me find jobs, a career, love, and most importantly gave me life.
I’ll be here for awhile.
So I met with my therapist this morning, a.k.a. my biggest fan and supporter. Our main topic of conversation today was my lingering headaches and my frustration with my lack of progress and inability to maintain the lifestyle I was able to before this chemotherapy trial and surgery. She had me elaborate so I mentioned exercising at the gym as my main complaint, enjoying certain social gatherings past 7pm and others at non whispering establishments is a big one, and of course working and earning a paycheck.
She thought that was understandable but what I’m not understanding and what’s also hard to communicate to others is that upon the termination of chemotherapy one cannot expect immediate normalcy. I’m on a slew of medications to control my pain that come with side effects of their own, surgery of the brain is known to have long lasting and sometimes permanent side effects so this is my normal for now. But we didn’t throw a pity party so she wants me to focus on what I could do before surgery that I can still do now. Granted what I can do now comes with a hint of headache (usually masked by my pearly whites and poker face) but she’s right there’s a lot I can still do. I love to have lunch with my friends, stroll around Brooklyn neighborhoods, do crossword puzzles, eat, cozy up on the couch with my boyfriend for an exciting Saturday night of Jeopardy and Dateline, and I love hearing from and seeing all of you who read my blog!
It was a great hour session, they always are. Moving forward I will try to think about what I can do instead of what I can’t and one thing I know for sure is that before surgery I could and now CAN still THROW A BASEBALL over home plate: http://m.youtube.com/watch?v=LNAKTAtMLhY
They say cheaters never prosper but what about quitters? It seems as though quitters get a bad rep but after making the decision to quit participating in this Phase II chemotherapy drug trial I sure as hell hope I’m not made out to look defeated and better yet I hope I made the right decision. What I do know is that the fear of the unknown and the unexplainable complications I’d been experiencing the last several weeks had become so burdensome that I came to the conclusion with my partner in crime a.k.a my momma that it was time for a break or change in course. Don’t call the strippers yet, this is preliminary information of course and I have a lot of homework to do by seeking out professional opinions from other institutions and still need to meet with my Doctor to see if I’m in trouble for quitting on my own terms.
The word “quitting” really does have a negative ring to it. I’d like to think I ‘withdrew’ myself from the study because the side effects had just become too painful and my quality of life was clearly deteriorating. That sounds less pathetic. On the other hand, quitting something can be very powerful and if you’re proud of it you should proclaim your feat. Like smoking, for example. I don’t know anyone who has accomplished this feat that would bashfully admit they “stopped buying cigarettes.” Go dad! Fifteen plus years?
So with this exercise I shall list some things I quit since the beginning of time that I either a) could have stuck out a few more years or b) clearly made a good choice by helping my well being. Hmmmmmm…..
1991: Girl Scouts. boring.
6th grade: Saxophone and Middle School Band. Painfully regret this now. Had I known I would end up as a 20 something year old cancer patient living in Brooklyn with a bad ass hair cut, think about the tips that would accumulate in my hat jamming on the subway platform. My cardboard sign would read: “I play to pay cancer bills.”
9th grade: Varsity swimming. No beating around the bush, I stunk.
2009: drinking Diet Pepsi (cold turkey, not one sip to date). Maybe my biggest accomplishment to date considering the liters consumed per day.
3/17/2011 St. Patrick’s Day at an Irish Pub on Stone Street in Manhattan: the day I quit chasing my dream of becoming a Yankee wife.
2012: my job as a paralegal.
Last month: completing morning brain exercises with Lumosity.
There you have it. My pathetic list of defeats or accomplishments, depending on how you look at it. Now I’m sure I’ve left out some events worth forgetting but whether your list is long or short it’s what you take away from your experiences. I think what we don’t want to have is regret and I only used that word once up there (see saxophone). Lesson learned: when life starts to get really shitty don’t be afraid to withdraw from whatever it is that may be causing the shittiness to occur as long as you don’t regret later having stopped taking that pill that caused you to wake up every morning feeling like you got beat up with a baseball bat.
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.