So, here I am about to start my new life. I just finished seven years of working full time while going to school to get another bachelors degree and then my masters in Occupational Therapy. I had survived two incredibly difficult internships, one at Bellevue Hospital in New York City and United Cerebral Palsy in the Bronx. I passed the national board exam – the hardest test I’ve ever taken in my life (and longest – 4 hours). And I accepted a position at my dream job at Children’s Specialized Hospital. I found a great apartment 10 minutes from the hospital. Everything was in place…all my ducks were in a row.
But deep down I knew the bubble was gonna burst any minute. Everything was going TOO WELL!!! I recall even posting a status on FB…” can you truly have it all?” My post was commented with many, “Yes, Janice…it’s your time, you’ve worked so hard, you deserve it” …yadda, yadda….
So, before I moved back to New Jersey, I decided to get all my doctor’s appointments out of the way. I had been putting off my follow-up mammogram from a biopsy I had undergone last year to check a cyst that had been bothering me in my left breast. It was nothing, but it hurt when my boobs swelled up around the time of my period and just made me paranoid – as most of us women do when we feel any sort of strange lump in our breasts.
My prescription was only for the LEFT breast. However, the mammography technician just randomly asked, “How about we do the right one, too?” The thought hadn’t even crossed my mind. I told her that I was only there for the left. I wasn’t old enough to get them both checked, I wasn’t sure insurance would cover it – and again, I didn’t have a prescription for it. But she insisted. She told me not to worry about it – that she would get a script for me.
So, as I’m being contorted into 20 different positions and my boob is being squeezed into that infamous mechanical vice grip (you know that feeling, girls – when it comes down and you think “oh my God, when’s it gonna stop…. AAAHHH”). It’s like those automatic blood pressure cuffs at Stop & Shop where you have that panic for a second and wonder if it’s going to keep going and going and going. Suddenly the tech gives that concerned, “hmmmm….” and her face squishes up – kind of the same face I make when I’m watching Ramona on Housewives of NY (something here just ain’t right). She then asks me to return to the waiting room. Well, I knew that can’t be good, usually I just leave at that point. So, after waiting for about 10 minutes (and yes, I started to silently cry in the waiting room – I knew something wasn’t right and my gut started to go in knots).
“The doctor will see you now…”
If I had a dime for every time, I’ve heard that phrase in the past two weeks.
The radiologist had 3 huge computer monitors with my boob HUGE on the screen in various angles. He explained to me that they see two areas with “micro-calcifications” – it looked like little constellations. I thought to myself “cool, no lumps, can I leave now?” He said he just wanted to biopsy the area to make sure it’s nothing. He said sometimes calcifications can indicate something wrong with the surrounding tissue.
I thought, “Ok, fine another biopsy”. The one on the left was a synch – it was done via ultrasound with me lying on my back. They just made a little incision and took a little chunk and put in a metal chip to help them keep an eye on the area. I call it my “GPS device” …as if another man touched my boobs, an alarm would go off letting my boyfriend know I was cheating on him. LOL!!!
But no…. this biopsy experience would be MUCH different….
“Y’all are lucky I have a gymnastics background”
The breast imaging center that I went for the biopsy was fabulous. They have a “spa-like” atmosphere. The receptionist was a doll. There was coffee, teas and pastries and all the latest gossip mags there for me in the waiting room. I was led into another gorgeous waiting room where I was given a nice robe and a key for a locker – I felt like I was about to get a massage. Hmmmm….not quite.
The radiologist comes in and explains to me that it’s going to be difficult to get the sample because the calcifications are located deep towards the tail end of the breast tissue in towards the axillary area (my armpit). You see these “mammo machines” don’t seem to address that axillary area very well, which is insane since it’s such an important area when it comes to breast cancer. Many cancers “dwell” in those axillary lymph nodes and can give that cancer an easy mode to spread like wild fire.
So, here’s the scenario…for this biopsy, you lay on your stomach on a table with a hole in it. Usually just your boobie goes through the hole, but for me they needed to have my whole arm go through as well. Underneath the table is a mammo machine – yes, another vice grip. This is how they will be able to see what exact area to extract tissue from…and yes, you are in the vice grip while they are cutting you up. Fun, fun, fun!!!
Problem was, they couldn’t position me in a manner where they could get the vice grip to “grab” the tissue they needed. Oh, what a disaster. Each time they tried, my arm would get squashed in and the edge of the table was tearing up my skin on my shoulder. And because I’m thin, I was getting bruised where the edge of hole hit my chest. When did being “too skinny” become a problem? You can never be too rich or too thin? Well, apparently so in the world of mammography. After an hour of twisting my body in positions only seen in Cirque de Soleil, they decided to give up. The doctor said I would have to be put under anesthesia and have it done surgically. Oh frig. “NO WAY!” I said.
There was no way I was gonna go through the whole rigga-maroo of going under anesthesia (which I have never been before and are terrified of…but we’ll tackle that issue later). I started calling other breast imaging centers…I was determined to find a biopsy table that would fit my frame!!! Finally, the radiologist called me and said, “Look, I have another table at another location and we can try again, but I can’t make any promises”. I said, “Yes, please, let’s try again…and I don’t care, you guys do whatever you have to do, beat the SHIT outta me…just get it done!” (and yes, I talk to my doctors in that manner, especially when I’m all freaked out).
So, we tried again with a different table. The hole was a little bigger and the table edges seemed a little softer. But it’s like lying on the ground and trying to reach down a deep hole…kinda like Bill Murray trying to get the gopher in Caddyshack. I mustered as much mental strength as I could to just block out the discomfort in my positioning with my legs and torso twisted, my neck cranked where I’m practically looking at my back and my shoulder abducted and externally rotated like Randy Johnson mid-pitch. I said to the doctor and the techs…”Y’all are lucky that I have a gymnastics background…I’m very ‘bendy’ thank goodness”. Fortunately, they got it…they got a couple of good chunks way back to my muscle. I left thinking, “Thank God, that’s over. That was fucking torture.” Little did I know the worst was yet to come.
So, the doctor tells me he’ll have the results on Monday (biopsy was done on Wednesday). I wasn’t even thinking about it. I had a biopsy before and it was nothing. Heck, I’ve had many tests and it’s been nothing. I just went about the rest of my week and my plans for the weekend. I was in NJ with my boyfriend at the time. Friday morning, we went to the diner for breakfast. As we’re about to order, my phone rings. I look at him and go, “Huh…it’s the radiologist. Why’s he calling me so soon?” Then for that milla-second I could sense we both got a pit in our guts – this can’t be good.
“Janice, I have some bad news. Unfortunately, the biopsy came back as cancer”.
My entire body just went HOT…and I stared straight ahead at my boyfriend across the diner booth from me like a deer caught in headlights. He knew it wasn’t good. I honestly don’t remember much at this point. I was so numb. The radiologist started to babble about me getting in touch with a breast surgeon and my OB/GYN, etc. etc. I just said, “Uh, I cannot process anything you are saying to me right now so I’m going to have you talk to my boyfriend”. I gave the phone to him and ran to the bathroom and, well, I’ll spare you details.
I came back and gathered myself. I thought “Ok, take it step by step”. I guess it also helped that I was in a public place, so I was forced to not totally wig out like a crazy person. So I took down notes of what I had to do next…find a breast surgeon.
Oh p.s. – The radiologist is a young guy – about my age. I’m telling you, he sounded so sad on the phone. I’m sure this is not an easy job for him to do…but seriously, I think I was his first positive. He just kept apologizing to me over and over, like it was his fault or something.
My boyfriend and I got right on our phones and began our hunt. He called his mom and started getting names of anyone who could help. I started making calls to everyone and anyone. This went on for hours. I was so voracious for a name and getting an appointment asap…I didn’t even have time for the brevity of the situation to set in. I finally made it to Dr. Leah Gendler at Morristown Memorial…the most important woman in my life (sorry, mom).
So, once I completed “Step 1” (making the appointment with the breast surgeon), I began researching and assembling my support system. The first people who came to mind, my friend and former roommate Melissa who I met while working at Yale Pathology. She worked in the lab working on breast cancer research with my other two friends, Aaron and Jena, both Yale medical school MD/PhD graduates. I am sooooo incredibly grateful to have these people in my life. Then I began contacting other friends and family…this is absolutely the worst part of this experience. I probably should have written this blog sooner, because telling the full story over and over was so mentally exhausting. It still is. It’s just re-hashing and re-hashing. And hearing their reaction, just aches in my heart. But I know that the people who care about me are concerned and need to know details. I certainly would.
But I need these people…I am a “people who needs people” (Thanks, Barbara). I am someone who loves having lots of friends (as you can tell by my 510 friends on Facebook, and yes, I communicate with mostly all 510 often). I love all my friends and all the different characters and memories of all the various phases of my life. All of you are my support system. You are all a part of “Team Janice” against cancer…and I thank you, appreciate you and feel incredibly blessed and grateful.
Being diagnosed with cancer or any disease I’m sure…or going through a pregnancy or anything medical is RIDICULOUSLY overwhelming. I just went through 7 years of learning medical terminology and my head has been spinning. I can’t even imagine what it’s like for the “layman”.
I’ll put it to you this way…I spent 2 hours with Dr. Leah Gendler going over the initial plan of attack. These days, you usually get about 10 minutes with a doctor before he writes you a script and sends you out the door. Usually I don’t bring anyone to doctor’s appointments, but I had my girlfriend Chrissy (my angel!) and my boyfriend sit in with me to catch the balls that get past me. My technical diagnosis is “Ductal Carcinoma In Situ – intermediate nuclear grade”. Translation…the cancer cells are within my milk ducts (thus the calcifications on my mammo). Fortunately, they are non-invasive, meaning that they have not “invaded” outside the ducts. What does this mean so far? All I heard was “treatable” and “no chemo” and I think that’s all I needed. The treatment of choice in this situation is lumpectomy, six weeks of radiation every day and 5 years on Tamoxifen (google it). Seems cut and dry, right? Wrong. There are other factors to be considered. This is where me and Christina Applegate will hopefully differ (she was diagnosed with DCIS as well). Other tests needed to be performed to determine the probability of the cancer coming back. One test is called an ER/PR test (estrogen/progesterone receptor test). I’m not 100% here, but she led me to believe that this test will determine if hormone levels have something to do with the proliferation of cancer cells. Genetic testing will also be a factor. This is where Christina Applegate made her decision to do the double mastectomy. Her genetic test was positive. Along with that and that her mother had cancer twice…she just didn’t want to take the chance. I, on the other hand, have no history of cancer in my family. I’m the first – YEAH!!!! Last but not least, I would have to get a breast MRI (we’ll go there later) …that will show any other tidbits that may not be seen on mammo – especially since I have “dense breasts”. Yeah, they ARE dense – stupid enough to get cancer – dumb boobies!
Now, I’ve had MANY MRI’s performed (my shoulder and foot). I’ve had a CT scan of my head and my whole body. I’ve been there, done that with diagnostic testing. But getting a breast MRI is the worst. My breast surgeon had suggested I take a Xanax beforehand. I didn’t really understand why…but I did and DAMN, I’m glad I did.
You lay on your stomach with your boobs through a hole and your face in one of those things like you’re getting a massage (again, not quite). You are given some dye or something intravenously. Your arms are straight against your sides. They then slide you into “the coffin” head first. Oh Lord…it is the weirdest feeling. And yes, I’m claustrophobic to begin with. It’s so difficult not to panic or freak. In my head I’m screaming, “OMG, get me outta hear, get me outta here!”
DOOSH, DOOSH, DOOSH! I’m lookin’ around for The Situation and Snookie. Suddenly I’m IN the woofer at Alchemy in downtown New Haven. I was given ear plugs, but that did nothing. So now I’m instructed not to move for FORTY MINUTES!!!!! Look, I am like a child with ADHD. For those of you who know me, you know I’m like a little bunny boppin’ around all the time. To tell me to stay still like that, in that little tube for 40 minutes…SERIOUSLY? Well, this time my “skinny-ness” caught me a break. The tech told me that since I’m so thin, he only needed to have me in there for 30 minutes. Oh, Sweet Jesus. While in there, it took every fiber of my mental strength to try and just focus on ANYTHING but what was going on. I started thinking about my friends and all the well wishes I’ve received on Facebook. I tried and visualize being on the beach in Aruba. I tried to play the movie “Sixteen Candles” in my head (one of the many movies I know line by line). But every once in a while, I would gain stark awareness of the tube I was lying in and the loud thumping and start to have a mini-panic attack.
But I made it…I was very impressed with myself. That was a tough one.
A couple of hours after I get the MRI…I get a call (already?). Turns out they found something on the left one now.
For some reason it made me think of when my sister used to say, “Oh just suck the left one and make the right one jealous”.
Well, “right one” …looks like someone is trying to steal your thunder. The radiologist says he sees a “spot” way back against the muscle. This “spot” could not be seen via ultrasound or mammo…only MRI. So, what the heck does that mean? Well, it means another biopsy needs to be performed. But this one is going to be different from the first two. I’ve had biopsy via ultrasound and mammo…and now I’m going to need one via MRI.
Really? More of this crap?
So, it seems they this is a very delicate procedure since the “spot” is way back. When they target the area via needle guided MRI, they have to be careful to not go too far and puncture my lung. OY VEY! So, this biopsy will be done while I’m under having the right one done. More chunks taken from my poor bubbies
Step by Step…Oooh Baby… Step ONE:
As many people going through cancer will probably tell you – it becomes a full-time job. Suddenly I feel like a Hollywood publicist with the amount of time I’m on the phone. I bought myself a pink binder from Staples to keep myself organized. Between appointments and working with my insurance, I am the busiest non-working person (I don’t like to say unemployed; because technically I am employed…I just can’t start my job yet because of this hurdle).
So at this point, my estrogen receptor test came back very positive (over 90%) which is good and bad. The good news is that “they” feel that the cancer can be controlled with Tamoxifen (google it). If the test was negative, that would indicate a more aggressive cancer that would be more difficult to treat. Problem is that “they” put patients on Tamoxifen for 5 years (I’ll get to THAT issue later). The bad news is that the probability of the cancer coming back is high (thus, the need for the Tamoxifen). It’s just sooooo overwhelming…all of it. Thinking ahead 5 years in my life and knowing that I have to monitor this cancer for who knows how long. Again, this is why many women opt for the double mastectomy…to relieve them of the worry and headaches of diagnostic testing to monitor any changes.
Now I’m still waiting for my genetic testing to come back. Since I have no history in my family, I’m hoping that comes out negative. The results of this test tend to be the factor that leans most women to go with a mastectomy instead of a lumpectomy. As of now, I’m just going with the lumpectomy/radiation package deal. The Tamoxifen…I’m still on the fence.
So yes, each day I try to just take it step by step. All the information and all the steps to this process become just a circus. I make a list each day of who I need to call and what appointments I have for that day. I’m finding that if I look too far ahead, I start to lose my shizzzz. The fact that I’m being forced to make some decisions about my future is making my head spin. Baby steps…baby steps…
Hmm…this is really f@#&ing happening, isn’t it?
People have been commenting on how “together” I’ve been since this diagnosis. Don’t get me wrong – I’ve had my times crying and rocking on my bed in the fetal position. I’ve had major moments of anger with God for throwing this in my face. I’ve cursed the people at the Appleby’s and China Buffets with all their gluttony, seeing people smoke and drink – “Why doesn’t that fat bastard abusing HIS body have cancer?!!!”
But what I think it mostly was…it doesn’t seem real yet. I feel like I’ve been in a bit of denial. I don’t FEEL sick. I can’t SEE the cancer.
I’ve never had a major surgery like this. I’ve never been under anesthesia. I’m starting to freak out. I’m so scared of all the possibilities…all the risks…everything that could go wrong. I know people have surgeries every day and anesthesia is used all the time. But it’s the same as telling me not to be scared to get on an airplane because people do it every day (and worse, the ol’ “it’s safer than driving” bit). Ok maybe if I dig deep it’s some sort of fear of not having control. I know I have to learn to surrender and just trust. I can’t believe how difficult that is for me to do. I guess it’s years and years of conditioning. Living the NY/NJ lifestyle – we tend to be control freaks. Shocker, huh?
Cirque De Soleil at the Carol Simon Cancer Center
So here we go…it’s SHOWTIME! I’m up at the ass crack of dawn (5am to get there for 6:30am registration). I take my dial antibacterial shower as instructed with no deodorant or lotion afterwards. I am “sterile”! And of course, I had to shave my pits and my legs…good thing because I was a naked slab of meat for the next 7 hours (don’t wanna be the hairy girl on the gurney). I put on a hoodie and put the hood up like I’m goin’ in for a Tyson fight. I’m ok…I’m strangely calm. Don’t get me wrong…didn’t sleep a WINK the night before.
Now let me tell you something about myself, to those who don’t know me…when I am nervous, I turn into a character that I lovingly call “Shecky Malone” (think old-school comic with a cigar, a little Jackie Mason-ish). Every person I came in contact with through the tests and the surgery, for some reason, I feel I have to make them roar with laughter so they remember me…so they don’t treat me as an medical record number, that somehow they will like me and treat me better. Hey, it was 8am Monday morning…I’m sure they appreciated a little humor to wake ‘em up and get their groove on. “Thank you, thank you…I’ll be here all week! Please tip your waitress!”
Well, with that…The “team” spent 3 hours beating the CRAP outta me. I was called a “trooper” multiple times. You see here’s the process…first they injected me with nuclear blue dye. Look, I have two tattoos and I’ve dealt with multiple needle stickings, but this shit hurt. I think I even let out a “mutha fucka!” and a “YOWZA!” And I just love when they THEN say…” Ok, you’re gonna feel it burn”. Don’t they understand they have to tell me that BEFORE so I can mentally prep?
Then I was taken to the MRI room. Again, just like the damn core biopsy. These tables are just not made for thin people. I was pushed and pulled into this thing as it dug into my ribs and I’m getting another injection of the contrast stuff (and weirdly it made my tongue hot…wtf?). So, I’m in there with the fist pumping beats going on again in my ears. Oh boy that shiz was diggin’ in my ribs so bad…but you can’t move, can’t adjust, just gotta deal. Then FINALLY they take me out…and here comes the first round of localization needles they poke into my boobies through the clamps in the machine. Once again, I yelled out a “mutha fucka” and a “YOWZA!” Then BACK into the machine for more pictures. Ah, the life of a model. Gotta do what it takes for them to “get the shot”.
Now, off to the mammo room. I’m getting so familiar with these machines. I walk in and look at it and say to myself, “Hello, old friend”. This became the room from hell. After try after try…the tech just couldn’t get me into position. You see, my cancer is so way back against the pec wall and into the arm pit. She has me holding yoga-like tree positions and bending backwards. It got so tedious, I started to pass out…my face went white and I dropped (remember, I haven’t drunk or eaten anything). The doctor and nurses came in and “brought me back” – legs up, ice pack, deep breathing – the standard protocol. OK, back to the machine…. this time a “team” of people twisted me like a pretzel, pushed my head back, held my shoulders back in an effort to “get the shot”. Once they got it…” OH no, Janice, don’t move” …here come the needles. But I didn’t go with a “mutha fucka” this time…this time, I had to call in the big guns…LADY GAGA! I had the whole team singing “Rah-rah-ah-ah-ah, roma, roma-ah, gaga, ooh la-la, want your bad romance” over and over ‘til all the needles were in. And yes, the older male doctor sang along. What the heck…he’ll have a funny story to tell the wife tonight.
LISTEN MY PEOPLE: Let me share one of the many lessons I’ve learned from all this. Once in a while you seriously have to stop and just look at the absolute RIDICULOUSNESS of the situation. I’m there with these people holding me in the Crouching Tiger-Hidden Dragon meets Matrix, with all these needles sticking out of me like a damn voodoo doll…and let us not forget…HELLO?? I’m NAKED!!!!! (Once again, good thing I shaved them pits!)
So to all my friends…when you just don’t think you can take another minute…stop and laugh. Sometimes, it’s so bad, it’s funny….kinda like “GIGLI” with J Lo and Ben Affleck.
Oh and p.s. Anesthesia…piece of cake…had the best nap of my life. HOLLAH!!!!
Recovering from a surgery is never fun. But try being 39 and having your 70-year-old mother come and take care of you just takes the humiliation and shame to new levels. All of a sudden you are an infant again, having your mother sponge bath your naked body…having her wash your hair in the sink. Yes, yes…God bless her. But with that…she drove me utterly INSANE!!! Let’s just say, if there were only an Olympic sport of vacuuming. My mother seriously just vacuumed and vacuumed for hours upon hours. I had to wear ear plugs to get some rest.
Radiation was nothing painful, just more of a pain in the ass. I had to get up early every day for 4 months and drive to the hospital about a half hour away before getting to work. They give you little dot tattoos to mark where they point the machine, so it makes setup easy for each session. Near the last two weeks of treatment, I finally developed a bad burn. Radiation has a cumulative effect, so you may think you’re in the clear and then…boom…major sunburn. I was shocked! My Puerto Rican skin had failed me. All those years of baby oil and aluminum foil on record covers and no sunburn.
My boyfriend at the time was not much help. Turned out he was planning on breaking up with me before I got diagnosed. But then he didn’t want to be “that guy” …the guy who dumped the girl with cancer. Instead, he stuck around and just did his “thing” on the sly. Oh how very John Edwards of him. It’s funny how I didn’t even see it at the time or even give him any slack for not being as supportive and loving as he should have been. I’m thinking subconsciously I really didn’t care. He ended up “officially” breaking up with me the last day of my radiation treatment. I didn’t shed a tear. As my friend Beth likes to say…” MOVE THAT BUS!”
Pam Simmons says
So I just read your original long blog about getting your cancer diagnosis and all you went through in the subsequent testing. By comparison I’ve had it easy – just your basic biopsy using the ultrasound – not the upside down thing, thank goodness. And they had me apply this lanacain numbing creme before I left the house at 5 am so that when they put those three needle’s worth of dye in the areola, it didn’t even hurt. So, after my fear of never having had surgery and mine lasting 7 hours, I too came out giddily raving about the great sleep I’d had (and I remember nothing!). Loved reading your experience and winced along with you and was thankful mine was a bit more uneventful — SO FAR!! These tissue expanders are like a wire cage under your skin and I have a little bit of a skin issue on each that I hope clears up to avoid any additional surgeries. It’s a long process from start to finish, isn’t it! I had my bilateral 12 days ago, and before that it was 8 weeks from discovery to surgery, and then who knows how long until new boobs – they won’t ever give you a timeline. And I want to get my ovaries out (BRCA2) end of Nov if possible…it never ends. Well, hopefully it will! Just takes a lot of patience! Hope to hear back from you, Janice.
Janice Woerner says
Pat, thank you so much for your comment. It was such a circus. I think people forget about what a nightmare the diagnostic process, itself, can be – let alone the treatment. Please keep in touch and friend me on Facebook so I can add you to my private support group. xo