Nº. 1 of  12

Boooo Cancer. You suck!

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Posts tagged breast cancer:

Oh, hey there!

Wow! It’s been quite a long time since I updated the ol’ Boo! I sure hope that everyone out there is doing well. Are you all having a nice summer/winter? (That’s me being all clever and recognizing that some of you are in another hemisphere!)

I’ve just had a full on meltdown watching this BBC show, Call the Midwife. I’m talking a full on crying, have to keep pausing the episode because I’m flipping out so much, many tissues crumbled around me kind of meltdown. I bet you can guess what the episode was about? Yep! You guessed it. It was about a man who had cancer. This is something very interesting that I have noticed within the last say… eight months or so. Let’s say a year just to be safe. I have a lot of trouble watching films/shows where someone has cancer. Especially if I know they are going to die. It’s strange, really. I try to process what thoughts are going through my head as I am weeping in front of a screen but I can’t seem to pin them down. It’s more a feeling. A tremendous, heavy, desperate feeling of sorrow. That’s the best way I can describe it. 

I had a little crying meltdown recently when I was sharing the work I have done so far on the Boo Cancer book (more to come on THAT hopefully SOON!!!!) with a friend of mine. I was simply going over a timeline of events as I want them to be in the book and talking about each little point on the timeline et voila! Crying meltdown. I’m talking can’t speak, can only sob type of crying. And all I was doing was talking about when I had cancer!! 

When I was going through treatment I felt I was handling it like a champ. Well, like the best champ that I could be considering I had cancer. Even after treatment I felt I did a pretty good job of sliding back into life. Granted I felt a bit lost, as if I had to figure out who I was all over again, but still, I wasn’t crying hysterically if someone with cancer was in a film or on a t.v. show. I think there is a part of me that, in order to protect myself, pushed down a lot of how very heavy and awful the disease was and how scary it was to know that here I was with a disease that kills people. I myself have lost people I know to it. Then there was the moment when having a double mastectomy came up because of that darn BRCA2 gene. And then having my ovaries removed. All things that I still think about, albeit carefully and in my own time. 

I think somewhere along the line there was a great deal of sorrow that was pushed deep down inside me which now comes out in these silly moments which are usually accompanied by orchestral strings and good lighting. I’ve had the disease. I know how serious it is. I know how awful it can make you feel. How scared. How utterly alone even when you are surrounded by people. And how suddenly you can go from being a young woman going about her life to someone who has to think about her life being shortened and what that even means. 

I think I need to be a bit more careful about the things I watch for awhile. Then again, it’s good to feel. I’ve never been one to shy away from honoring the feelings that come up inside of me. Maybe it’s not a bad thing to have a (HUGE) cry every now and again over something that is indeed sad no matter which way you look at it. Yeah. Maybe that’s the way to look at it. It’s okay to feel scared or sad about something I’ve had first hand experience with that was both scary and sad. It’s okay. I’m going to go easy on myself. Better to feel something than to not feel anything at all. 

No biggie…

Today I went back to get the results of my biopsy. First of all, let me start by saying that Dr. Jerkwad was much more subdued today. I think my kind of snapping back last time and being generally unimpressed with his complete lack of bedside manner kind of put things where they should be. Today we just cut to the chase: the results. 

And the result was… pre-cancerous! Yay! Wait. Not yay. Turns out that dark spot that he removed was indeed “evil” after all. Luckily I caught it in time. Yeesh. I did not get through having breast cancer just so I could then move right into skin cancer. No thank you. I remembered while I was in his office this morning that there was a spot on my back that was pretty dark as well so I showed him just to be on the safe side. He agreed that it didn’t look too good and went ahead and got that spot off too so he could send it off to be tested. Better safe than sorry. Now I have to go back in again on Monday to get the results of that biopsy! 

It’s strange. I felt a lot like I did when I found the lump in my breast. Somehow I just knew it wasn’t good. That’s how it felt finding these dark spots on my skin. They just didn’t feel good. I can’t stress enough how important it is to be familiar with your body. Know yourself. Girls, that means know what feels normal or does not feel normal for you. Keep an eye on any changes that occur. Better yet, if it comes down to giving yourself a monthly exam, keep your fingers on any changes! Be mindful of your body and proactive in getting a second opinion on things. If you think something is off, have it checked out! Sure, it might turn out to be nothing (and that’s great!!) but then again it might be something and catching it early can mean everything. Trust me. Educate yourself about what is normal for you so that you know when things seem off. 

My margins cleared so that was a good thing. I guess these are pretty common. I’m just a wee bit weary having gone through the whole shebang once already. Not really in a hurry to do it again! It’s kind of wild because both of these spots are were in places where I don’t really get any sun. There you have it! I’m really glad that I trusted my gut and went to have things checked out. Might have been one of the best things I’ve done for myself in a long time! 

Bad week

This has not been my best week. Emotionally, that is. Something happened on Monday that got things off to a bad start and I just never quite recovered from there. I wasn’t even going to write about it but now that it’s the end of the week and things haven’t gotten any better for me emotionally I guess I’ll just go ahead and get it all out.

Back when I was going through treatment and went to go see a genetic counselor to find out if I had either the BRCA1 or 2 gene I always carried a notebook around with me everywhere. I had so many medical appointments with so many new vocabulary words and terms I had never heard of that I had to write everything down because there was no way I was ever going to remember it later. Not too long ago I found one of those notebooks (there ended up being a few!) and began to flip through it. When I came across my notes from the genetic sessions I noticed that the counselor had said that the BRCA2 gene can predispose you to other types of cancer. One of them being skin cancer, and so it was best to keep an eye on any darkening or changing moles or freckles on my body and have them checked out. I’ve been watching what I guess was a freckle on the side of my left breast get steadily darker for awhile now so I figured it was best to be proactive and go in to have it looked at. Just to be safe. 

This past Monday I had an appointment to see a dermatologist uptown. Now, I have Medicaid so I had to look up who in NYC takes my insurance and tried to make a good decision from there. The person I found had so many rave reviews from patients online that I went ahead and made an appointment at their office. I went in Monday prepared to have the spots I was watching checked out. I ended up crying all the way home. But I digress…

When I first walked into the office I filled out the necessary new patient paper work (in which I am well versed by now) and waited my turn. There were hand drawn cards and notes adorning the walls of the waiting area thanking the doctor and telling the doctor how great they were. Good sign, I thought. Then the doctor came out. He sat in the waiting area talking to a youngish girl who was obviously a medical rep of some sort. He told her all about a “rich” client who was flying him overseas and how “rich” this person was and oh did he mention he was rich? When he was done he told me to follow him back to his office. 

Now, normally when someone in the medical profession is meeting me for the first time they either take a look at my case history or I fill them in on me having cancer and all that. This is usually the time when we pause and talk a little bit about what happened and me having the BRCA2 gene. All things that are good to know. Not this guy. I told him I had had breast cancer and that I had the BRCA2 gene and he said “so why are you here?”. Okay. I said that I had been advised to keep an eye on any spots on me because the BRCA2 gene predisposes you to… but I didn’t get to finish my sentence. “Nah! That’s not really true. I mean, not really” he said. Then he asked me where the area of concern was. I told him it was on the side of my breast. “Okay, show me.” Excuse me? I asked if there was a gown I could change into. Nope. “Just take off your top and show me. I don’t have x-ray eyes”. This was getting worse by the minute. So, I complied, trying to maintain a little bit of modesty all the while. He took a look at the spot and agreed that it did not look good. He then asked to see my legs and I said there was no need. He told me to go ahead and take my pants off so he could see and I declined. This was definitely not going well. 

He told me that we needed to get the spot that had brought me there off. Okay. When? Right then. Immediately. Ugh. I’m totally fine with needles and things like that but I usually need a moment to wrap my head around getting poked with something and having even a minor procedure. Not this guy. No time to think. No time for anything. He shot the area up with novocaine and scraped off the problem spot. This is when it got really bad. “You have the BRCA2 gene?” he asked. I told him that yes, I did. “You should just get a mastectomy. Cut them off.” What. The. Fuck. But that’s not the end of it. He then proceeded to tell me that I should just get implants and that hey, his ex-girlfriend had them “but then again she was a stripper. As a matter of fact my last two girlfriends were strippers.” Amazing. This was hands down the single worst doctors visit of my entire life. I told him that maybe he should chop his you-know-what off. You know, no big deal. He didn’t seem fazed at all. 

He told me to come back in a week to get the results. That would be this coming Monday. If the spot we removed is “evil” (his word) then we proceed from there. Let me be clear though. If the spot is indeed “evil” I will most certainly proceed from there but Mr. Jerkwad doctor will not be moving forward with me. I am NOT looking forward to going back for the results. Not because I am nervous at all but because I am still so upset about that visit and his complete LACK of ANY kind of bedside manner befitting someone in the medical profession. Ridiculous. 

There. Now I’ve vented and hopefully got it all out. I’ve been upset about this for a week. Now maybe I can let it go and move on. Jerk. 

Pre and post pelvic ultrasound this morning. Nothing like drinking gallons of water and having someone shove something up your lady bits first thing in the morning to wake you right up! I was laughing with the technician because I said that strangely these appointments are usually the most tranquil part of my day. In a dark room, music playing softly… never mind what’s going on down below. I’m able to just tune it all out at this point. I did make sure to tell her that other scans had shown two little cysts on my left ovary and to ask about it. She said that one is a functional cyst which is actually perfectly normal. That’s so weird to me to think that a cyst is “functional”. Get it outta there, hahaha! The other one is the one that we have to keep an eye on. It’s not necessarily dangerous but she used some other word to describe it other than “functional” which now of course I cannot remember. Oh my poor little brain. Everything seems to be fine which is good. On with the rest of my day! Hurrah! 

Well today has been fun. This morning a friend texted and said that Brian Lehrer was talking about people who blog about their illnesses on his show and that I should call in. I have no idea what possessed me, but I did exactly that! Before I knew it I was on the air and talking about how beneficial it was for me to have my blog while I was going through treatment. 

I didn’t realize it at the time but the whole reason the subject of blogging your illness came up at all was because of a woman who has a cancer blog and who is chronicling her own journey through this disease. She has stage four breast cancer. Apparently two “journalists” decided they didn’t like the amount of information she was sharing on her blog and let the world know by writing two articles in separate publications stating just that. Their belief being that she was sharing too much, that there was no need to talk about how horrible it all was, etc… In a way I am glad that I didn’t know going into the call what exactly had sparked the conversation to begin with. I feel like that helped me to come in with a positive approach to how therapeutic it has been for me to have the blog in my life. 

Anyone who has followed this blog for any amount of time knows how much it means to me to be able to have a space that I deem “safe” to vent the often tidal wave of emotions which can come up when you are going through treatment. There’s the waiting to hear the results of a biopsy, the day you are diagnosed, a rushed surgery, chemotherapy, radiation, shots, blood tests, more shots, another surgery, and many decisions that you have to make quickly which you should never even have to ponder in your life to begin with. I started the blog as a way to process what I was feeling. I wrote on this blog every day for the entire length of my treatment. It was a place that I knew was waiting for me at the end of every day. It was one of the first things I thought of whenever something new or heavy was thrown at me. I knew I could go home, turn on the computer, and get it all out on my blog. My choice to have pictures accompany what I had written was also a personal one, but one that I have never regretted for a second. I think it’s important to know what it is really like to have cancer or to go through something like this. If people don’t want to see it, they don’t have to. It’s as simple as going to another website or getting off the computer. 

For me, this blog has turned into an entire community of support and friendship which helped me to navigate what might have been even more scary and overwhelming had I not had such an incredible environment to suss out my feelings on any given day. I like to think that the blog helped more people than just myself. I have met so many amazing people who also have their own stories to tell, and who have gone through something just as harrowing and who chose to let the world follow along. We have a choice in writing, and everyone else has a choice in reading what is written. It’s as simple as that. 

To try and condemn someone for finding a healthy outlet for a life threatening illness is not even reprehensible, it’s just mean. And again, if you don’t like something, don’t read it. There’s also the old adage that if you don’t have anything nice to say, maybe you shouldn’t say anything at all. Especially when you’re talking about somebody’s journey with cancer. Maybe just butt out. 

Having a blog can be a wonderful way to deal with your emotions surrounding the disease. To be able to articulate what you are feeling, and to possibly share it with others is a gift. It is nothing to be ashamed of. Better to talk about what is happening than to suffer silently with the fear of burdening others who might in fact want to know what you are going through, but who might possibly feel helpless in even knowing where to begin. It’s nice to have a place where the people you love, and even some of the kindest strangers you will meet, can come to check in on you, and to share in your experience. I am grateful in that I have been met with nothing but kindness throughout my entire journey. I have been humbled at the level of compassion which has come my way from complete strangers. Where is the bad in that? I believe that having my blog is one of the key factors in me staying positive throughout my treatment and even in what I see as another incredibly difficult time which is post-treatment as well. 

Hopefully I didn’t sound like too much of a ding-dong on the air today. I had just had a coffee and before I knew it I was actually on the show so I was a little bit taken aback! Ah well! I tried!

And to any of you who are new to the Boo, I invite you to please, fix yourself a tea (it’s cold outside!), and have a stroll through the archives to see what it’s all about. For those of you who have been here for so long… thank you. You made everything so much less scary, and you make the thought of ever having to do this again so much less frightening. 

This is my oh-so-glamorous mammogram face. Like it? I know, I know… I should really think about getting into modeling. I mean look at that hand positioning! And the way my tongue just kind of falls out of my mouth. Amazing. 
Today was mammogram day for me at Sloan-Kettering. I’d like to take a moment right here to say that it was SUCH a different experience than I am used to when I go to HH. I shan’t even say the name anymore. I’m just kidding. I had two surgeries at HH and got treated great each time. I just get frustrated with the five hour waits and insanity, that’s all. 
I was so proud to hand over the cd with all of my images on it. Mission accomplished! I know this is going to sound ridiculous, but I really like the robes at Sloan-Kettering! I think I’ve mentioned that before after my MRI. They’re a lovely color and seersucker, no less! But I digress. After changing into my robe I waited a wee bit in a little lounge area just off the actual waiting room. I had to a laugh because at one point I was so spaced out that I suddenly looked up and was mortified that I wasn’t wearing a bra! How could I have been walking around without one?! Then I remembered that everyone in the room with me was braless, hence the stylish robes we were all wearing. Ah yes. 
The mammogram went as well as a mammogram can go. Lemmie tell you something, they don’t play around here! That lady clamped my boob down so tight on that machine you couldn’t have pulled me off if you tried! OUCH!!! A mammogram is just one of the most awkward things you will ever experience in your life. Hopefully most of you won’t even have to get one until the “correct” time later in life. There’s nothing quite like dangling from a machine by one boob, with your shoulder down, chin up, head turned, feet facing forward, all while trying to make casual conversation with the technician. It’s a very special time for everyone.
I mentioned that my oncologist had felt something in my left breast the last time I saw her so they did a sonogram and ultrasound to check things out. Looks like the coast is clear! A doctor came in to tell me that from what she could see there was nothing there to worry about. Good news! So, off I went to collect my clothing (bra included) and head back out into the world. I’m glad that everything checked out alright. I wasn’t worried, but you never know. Better to stay on top of these things. And hey, I don’t mind hanging around in a seersucker robe for half a day one bit. It’s nasty outside!! 

This is my oh-so-glamorous mammogram face. Like it? I know, I know… I should really think about getting into modeling. I mean look at that hand positioning! And the way my tongue just kind of falls out of my mouth. Amazing. 

Today was mammogram day for me at Sloan-Kettering. I’d like to take a moment right here to say that it was SUCH a different experience than I am used to when I go to HH. I shan’t even say the name anymore. I’m just kidding. I had two surgeries at HH and got treated great each time. I just get frustrated with the five hour waits and insanity, that’s all. 

I was so proud to hand over the cd with all of my images on it. Mission accomplished! I know this is going to sound ridiculous, but I really like the robes at Sloan-Kettering! I think I’ve mentioned that before after my MRI. They’re a lovely color and seersucker, no less! But I digress. After changing into my robe I waited a wee bit in a little lounge area just off the actual waiting room. I had to a laugh because at one point I was so spaced out that I suddenly looked up and was mortified that I wasn’t wearing a bra! How could I have been walking around without one?! Then I remembered that everyone in the room with me was braless, hence the stylish robes we were all wearing. Ah yes. 

The mammogram went as well as a mammogram can go. Lemmie tell you something, they don’t play around here! That lady clamped my boob down so tight on that machine you couldn’t have pulled me off if you tried! OUCH!!! A mammogram is just one of the most awkward things you will ever experience in your life. Hopefully most of you won’t even have to get one until the “correct” time later in life. There’s nothing quite like dangling from a machine by one boob, with your shoulder down, chin up, head turned, feet facing forward, all while trying to make casual conversation with the technician. It’s a very special time for everyone.

I mentioned that my oncologist had felt something in my left breast the last time I saw her so they did a sonogram and ultrasound to check things out. Looks like the coast is clear! A doctor came in to tell me that from what she could see there was nothing there to worry about. Good news! So, off I went to collect my clothing (bra included) and head back out into the world. I’m glad that everything checked out alright. I wasn’t worried, but you never know. Better to stay on top of these things. And hey, I don’t mind hanging around in a seersucker robe for half a day one bit. It’s nasty outside!! 

Well, I can say this much for Harlem Hospital: it’s always an adventure. Yesterday I got myself scheduled for a mammogram this coming Friday at Sloan-Kettering. Dr. Deva’s orders! Time to get checked out! Now, normally I get my mammograms done at Harlem Hospital. The problem with that being that it’s Harlem Hospital and a notorious s*#@ show. Apparently it’s infamous for it’s disorganization. When I spoke to the woman at Sloan-Kettering to make my appointment she asked if it were possible for me to bring a copy of my film on a cd. Basically they would like a record of all of my previous mammograms so that they aren’t just starting from scratch and can track my history and therefore any significant changes in my breasts from now on. I told her I could try, but that I had tried before to no avail. She asked where my records were located and after I told her she said “oh boy. Well, I’ll just make a note here as to where you’ve been going and why you might not have a cd with you!” Ha! 
This morning I awoke with a newfound resolve to conquer the HH system. I spoke to a gentleman on the phone who told me I would be going to the main building, on the sixth floor, and that it was as simple as walking up to the window and asking for my film so that I might take it to another hospital. Wonderful! Sounds so simple! I really should have known better. After taking the train uptown I marched into the main building. Hello! Radiology please! I need my my images on a cd! I was then told I needed to go to the building next door, second floor. Alright. (Relatively deep breath). 
I then marched back outside and into the building next door. Hello! I need my images on a cd! There were four women behind a glass window and not a one of them looked up at me. Hello! I was told I should come here to get a copy of my mammograms on cd? Yes? No? Oh I see. You’re having lunch. Let me just wait. Upon being acknowledged at last I was told I would need to go down the block and around the corner to “the other building”. Um… 
(Increasingly deep breath). After walking down the block and to the building around the corner I trotted in and once again explained my predicament. This time with a feeling of impending doom. I was then told that I was in the wrong building (really?! How remarkable!) and that I needed to go all the way down the block to “the building with a ramp on it”. Oh dear. So, down the block I went, into a building that was, to say the least… “under construction”. Upon locating the medical records office (I needed to sign a release after all) I was met with this sign. One. Person. At. A. Time. Really? One? Just one? Cue soul crushing wait to go in. 
Once it was my turn to go into the one-at-a-time office I got my records, signed a release, and was then sent back to the original building to get my images on a cd. Needless to say I had quite the adventure this morning/afternoon. Still, mission accomplished. I can’t wait to see the look on the receptionists face when I go in tomorrow and actually hand her the cd. VICTORY!!!! Now I can get all my mammograms done closer to me. And in under four hours. It’s the little things, people. The little things. 

Well, I can say this much for Harlem Hospital: it’s always an adventure. Yesterday I got myself scheduled for a mammogram this coming Friday at Sloan-Kettering. Dr. Deva’s orders! Time to get checked out! Now, normally I get my mammograms done at Harlem Hospital. The problem with that being that it’s Harlem Hospital and a notorious s*#@ show. Apparently it’s infamous for it’s disorganization. When I spoke to the woman at Sloan-Kettering to make my appointment she asked if it were possible for me to bring a copy of my film on a cd. Basically they would like a record of all of my previous mammograms so that they aren’t just starting from scratch and can track my history and therefore any significant changes in my breasts from now on. I told her I could try, but that I had tried before to no avail. She asked where my records were located and after I told her she said “oh boy. Well, I’ll just make a note here as to where you’ve been going and why you might not have a cd with you!” Ha! 

This morning I awoke with a newfound resolve to conquer the HH system. I spoke to a gentleman on the phone who told me I would be going to the main building, on the sixth floor, and that it was as simple as walking up to the window and asking for my film so that I might take it to another hospital. Wonderful! Sounds so simple! I really should have known better. After taking the train uptown I marched into the main building. Hello! Radiology please! I need my my images on a cd! I was then told I needed to go to the building next door, second floor. Alright. (Relatively deep breath). 

I then marched back outside and into the building next door. Hello! I need my images on a cd! There were four women behind a glass window and not a one of them looked up at me. Hello! I was told I should come here to get a copy of my mammograms on cd? Yes? No? Oh I see. You’re having lunch. Let me just wait. Upon being acknowledged at last I was told I would need to go down the block and around the corner to “the other building”. Um… 

(Increasingly deep breath). After walking down the block and to the building around the corner I trotted in and once again explained my predicament. This time with a feeling of impending doom. I was then told that I was in the wrong building (really?! How remarkable!) and that I needed to go all the way down the block to “the building with a ramp on it”. Oh dear. So, down the block I went, into a building that was, to say the least… “under construction”. Upon locating the medical records office (I needed to sign a release after all) I was met with this sign. One. Person. At. A. Time. Really? One? Just one? Cue soul crushing wait to go in. 

Once it was my turn to go into the one-at-a-time office I got my records, signed a release, and was then sent back to the original building to get my images on a cd. Needless to say I had quite the adventure this morning/afternoon. Still, mission accomplished. I can’t wait to see the look on the receptionists face when I go in tomorrow and actually hand her the cd. VICTORY!!!! Now I can get all my mammograms done closer to me. And in under four hours. It’s the little things, people. The little things. 

This video is incredible. I don’t want to say too much because I don’t want to give anything away, but I watched this earlier today and felt hope in regards to finding a cure for the first time in I don’t know how long. I know it’s a long way off, but this is absolutely amazing. Especially when you learn how they’re doing it…

It’s really worth a watch. And then it’s worth sharing with everyone you know. 

A-ok!

Dr. Deva just called and said that the results of my ultrasound and sonogram came back fine. Huzzah! Now I’m good to go in the ovary department for the next four months or so. I seriously never stop being amazed at some of the things that come out of my mouth since having gone through this crazy journey. “Good to go in the ovary department.” Yep. It’s always an adventure! 

I came across this whilst wasting countless hours on the internet. Apparently there’s a whole series of re-vamped Golden Book jackets. This one seemed particularly relevant since I was looking into more boob options for the ever looming surgery. 

I came across this whilst wasting countless hours on the internet. Apparently there’s a whole series of re-vamped Golden Book jackets. This one seemed particularly relevant since I was looking into more boob options for the ever looming surgery. 

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