Dr Jekyll

C07AB553-2F52-4333-9A33-9A610B21AFF9So it’s been 5 long years since I’ve been diagnosed with breast cancer.  It has been a very long and painful process. SO if any of you have read my previous posts, you know the long story about my first breast surgeon and that he is an asshole of all assholes.  The butcher is what I refer to him as.  Today I have actually taken the initiative to fill out paperwork in order to file a complaint against him for not sending me for an MRI when he was told by the Dr who performed my biopsy that it was his recommendation.  He was a cocky bastard and just waved his hand when I asked him about the other breast.  He said the other breast was fine.  Fine?!!! How the fuck did he know my left breast was fine for sure?  Was he G-D and knew something I didn’t?  he was arrogant and also didn’t seem to think I had a BRCA mutation.  Again, was this man psychic perhaps or did he know something I didn’t ?  You ask yourself why file now after five years?  Why not? Why not file a complaint against a Dr who doesn’t send patients for an MRI, doesn’t believe in a mastectomies unless you have contralateral breast cancer and does biopsies without anesthesia. 

Not listening to him actually saved my life.  I turned out to be BRCA2 positive.  Luckily my left breast came back ok at the pathology report after I finally had my mastectomy.  Imagine if I would have never went to get genetically tested? The test saved my life and put me on a totally different path then I was planning.  Well that’s life and it throws you for some shitty surprises.  That’s when we have to put our very big girl panties on and march forward.

My best advice to anyone who is unfortunate enough to end up in my shoes, Do not let anyone tell you that you’re crazy or make you feel so if you think something is wrong.  Go to a second and third and even fourth opinion if it will land you with the right Dr who will listen to you and who will advocate for you. When something doesn’t feel right, it’s because it probably isn’t.  After all, you are your own best advocate. 6279F16F-F34A-4697-99CA-DB00107B4A34

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Grace under fire

F90AD83C-D7A1-475A-A956-3E51690EBDB4So today I was surprised by the amazing Charise Isis.  Let’s go back a bit in time.  Last year in June, I attended a conference that had a mastectomy shoot which was being held in the same hotel room by this amazing woman who has her own non profit called http://www.the-grace-project.org She photographs breast cancer warriors and women who have had preventative surgeries to reduce their risks of developing breast cancer.  I like to call them Mutantvivors.  I came up with the word myself, thank you very much.  

After my cancer diagnosis, I have had my ups and my downs.  Even with the downs, I always try to keep a positive attitude about things and even put the shitty shit into perspective.  I always say, it could always be worse.  So on my quest to learn some new information about things in the BRCA community, I decided that I should go and check this thing out.  Charise’s hotel room was filled with fabrics and her equipment.  She proceeded to tell me how she got involved in doing this project. The story she told was amazing and very touching.  Someone close to her was affected by breast cancer and she absolutely knew right then, that this is what she was meant to do.  

Charise asked me if I wouldn’t mind if she photographed me outside. I told her no problem.  It was warm that day.  Not as warm as I had hoped it would be in Florida. We had to be discreet since there were cars that would pass from time to time. I’m sure that at least one car got a free show jk lol.  Actually she was really discreet and really good at what she does.  I felt really comfortable being photographed by her.  When else am I going to have a topless goddess photo shoot that empowers women affected by cacner?  It was a beautiful and empowering experience.  I felts good in my own skin, even with scars and all.  It’s so important to know that we are still powerful sexual beings with scars and all. 

My sugar walls

IMG_5297.pngSo just when you thought things were over with your breast cancer diagnosis and all your treatments, comes a new and not so pleasant new normal.  You see all of this started when I was diagnosed with breast cancer at the age of 41.  Who would ever think getting breast cancer was going to be such a physical roller coaster not to mention an emotional one.  Those of us in the high risk BRCA and HBOC community need preventative surgeries in order to avoid cancer.  Since I have already had breast cancer, I wasn’t going to wait for ovarian cancer to strike me dead.  I decided rather than waiting till I was 45, to not wait and have a BSO at age 42.  One cancer was more than enough for me.  I have been in enough groups and had enough knowledge to know that many women suffer from vaginal atrophy after having a bso/hysterectomy as well as chemo. I asked my Oncologist gynecologist about vaginal atrophy. He told me not to worry unless there is something to worry about.  Well there was something to worry about after my surgery.  You see, vaginal atrophy doesn’t only make sex really painful, but it causes other issues such painful urination, vulvadinia, urinary tract infections, vaginal dryness and other issues.  People often mistaken vaginal atrophy as one single issue, but it most certainly is not. 

It’s been a world win of emotions having to deal with the side effects of all the surgeries.  Speaking to ladies on a daily basis has been a blessing and certainly an eye opener for me.  Many women complain about vaginal atrophy and so many complain about being dismissed by their Dr’s or told to use lubrication and vaginal moisturizers.  For those who have never had cancer and can take HRT, do not have to deal with these side effects on such a large basis.  Although taking HRT is a temporary solution and comes with it’s own challenges.  Not all Dr’s are comfortable with prescribing their patients with HRT. Especially those with genetic mutations such as BRCA. 

How could anyone feel good when they have one body, and wake up with a completely different one after surgery?  You are the same on the outside but completely different on the inside. There are ways to help alleviate and improve vaginal atrophy with a machine called the Mona Lisa Touch.  It is a laser treatment that helps women with vaginal atrophy.  Usually women need 3-4 treatments that are spread out six weeks apart.  Here’s the deal though, it’s not covered by insurance company for vaginal atrophy.  It’s also pretty pricey. I went to see a urologist to talk about this and it is $800 a session.  It’s pricey and a lot of women can’t afford to pay out of pocket.  Also one needs a yearly touch up to keep the lining in good condition. The Dr’s office didn’t want to talk to me about possibly trying to put it through insurance because they claim that they have put claims in the past and the insurance company wouldn’t reimburse them.

Dr’s have advised women to use dilators, lubrication and other non-hormonal creams, but the problem is that they do not work most of the time and it becomes really an expensive project to keep your vagina semi lubricated. This still doesn’t solve the problem with vaginal atrophy.  Our vaginal lining is damaged from having thin tissue after surgeries and cancer treatments.  It isn’t exactly natural to have one’s ovaries removed before the natural age of menopause.  We don’t exactly have any other choice due to our increased risk of ovarian cancer.

I have asked women from varies sites about what they are doing for their vaginal atrophy and this is what I got as a response. I still can’t believe how absolutely sexist the medical community can be.  Several things I’d like to say here.  One, if it was a man who had sexual dysfunction, insurance would definitely and does pay for the little blue pill to aid the issue.  Two, men are having sex with women.  With their wives, and partners, so why not aid women in their discomfort and pay for treatments? 

IMG_5295.jpgI find it absolutely repulsive how fucking sexist the medical community is when it comes to women’s health. Treating women as subhuman isn’t anything new.  How disgusting is it when you go to the Dr and you’re told just to use lube or even better, some doctors aren’t even comfortable talking about it. So not talking about women’s health isn’t going to change things or make things better.  How absolutely insane! that in 2018, we are still put on the back burner.  Why are insurance companies paying for a little blue pill and we cannot get a laser treatment covered, which could dramatically change our sexual health.  

As a cancer patient I see the devastation that cancer has caused on my body and so many others.  We need to do better.  The medical community needs to do better.  We need for this to be part of our health care and we need insurance companies to start paying for our treatments. We deserve better than what we’re getting. I have posted some of the comments that so many brave women have shared with me.  This is just the tip of the iceberg. 

 

 

 

 

5 years and counting

So it’s been a minute since I wrote a blog.  March 18th was my 5 years cancerversary. It has been five years since my initial lumpectomy. I still can’t believer that five years has passed me by as if it was just yesterday.  As I I like to say, time flies when you’re not having fun.  It’s been a world wind of surgeries, chemo, shitty chemo hair, a bilateral mastectomy, a BSO and a 15 lbs weight loss from stress. Which off course creeped back on me.  Just sitting here and enjoying matzah ball soup and thinking about everything that has transpired within these 5 years.

Being diagnosed with any kind of cancer is devastating enough, but also being diagnosed with a BRCA2 mutation, is the icing on the cake.  Let me just say that going through cancer and fucking chemo has been one of THE hardest thing’s that I have had to endure.  Relying on another being to take care of you when you are down and out is no picnic.  I was scarfed shitless and like a deer in headlights.  The things that go through your head when you are sick are nothing less than depressing.  Will I make it?  Will I be able to finish my chemo treatment? Will I die from this cancer? What will happen to my kids?  I have to cut my tits off.  My ovaries and tubes have to go too.  I’m a burden to my family. All these thoughts go through your head when you are going through cancer.

One thing that I have to  say is that what kept me sane through all of this is probably my demented sense of humor.  Telling the receptionist at the oncologist’s office that you came in for your spa treatment is short of insanity lol.  The look on her face was just priceless. I can still remember it as clear as if it was yesterday.

Having cancer took a huge toll on my family. The kids would have to stay at my parents house after an infusion.  My poor father who has a heart condition took me to almost every one of my chemo sessions.  My husband took me three times I think and my friend Linda took me once.  My mother made me food a lot of the times when I would come over.  She especially liked to make me liver lol because she said it had good iron properties.  Good thing I love liver lol.

IMG_4845.jpgWhat cancer has taught me was that I had to be strong even when I felt weak.  There is only so much complaining you can do without annoying people around you.  No one on earth understands what it is you are going through unless they have been in your shoes.  Kid’s cannot relate to what is going on around them and are nervous during all of this.  Your husband does not function properly.  Especially when his wife and mother was diagnosed with breast cancer at the same time.  One fought to live and the other wouldn’t even let the Dr diagnose her and didn’t attempt to fight.  Metastatic breast cancer is the only fucking breast cancer that women and men die from.  BRCA sucks fucking balls!  Yet through all this heartache and cancer, I am still thriving.  I am alive.  I am not sub human because of my plastic tits and scars.  In fact my scars are not ugly what’s so ever.  They make me exactly what and who I am today.  They are a reminder on a daily that whatever tried to kill me did not succeed.

My fear of a reoccurrence will never go away, but that doesn’t mean that I am not fighting with my inner demons that are inside my head trying to scare the fuck out of me.  There are good days and there are bad days.  There will always be bad day’s, but hopefully the good will always outweigh the bad.  Lastly a big FUCK YOU to that bitch called cancer. You may have have got your hands on me but I won’t let you get your claws in me.

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All in the Family

IMG_4172.jpgIt’s been five years since I’ve known I carry the BRCA2 mutation.  what I didn’t know was who gave me the mutation.  We all suspected that it came from my dad judging from the family history.  But who really want’s to guess where something like this comes from? It’s life changing.  A BRCA mutation puts one at risk for multiple cancers, whether you are male or female.  BRCA and cancer doesn’t discriminate.

It all started five years ago when I was diagnosed with breast cancer. I ran to have a BRCA test.  I was only tested for the 3 most common Ashkenazi Jewish mutations.  My test came back positive two weeks later.  1/40 Ashkenazi Jews carry a BRCA mutation.  It’s a pretty high number considering what the general population’s risks are.

The genetic counselor urged my father to test, but he never did.  He refused after my mother talked him out of testing.  How could someone be so selfish?  How could my father leave me in the dark wondering where this really came from?  How could they leave me in such emotional anguish and distress?  

I was frightened for my father on so many levels.  He had a heart attack and a bypass 11 years ago and here we go, all of a sudden, he was diagnosed with lung cancer.  For years my mother did not want him to test. We all suspected it came from him but she didn’t want him to live with the guilt.  Now there was no hiding from cancer and BRCA. Everything that I was afraid of came to fruition.  

Since I’m pretty persistent, I decided that I would order the color test for him. My father did not want to go back to the hospital and see a genetic counselor.  He was fresh out of lung cancer surgery and still isn’t 100%.  The first sample we sent out didn’t meet color’s quality control test.  I thought I was going to loose my fucking shit.  I thought that it was as if someone was torturing me upstairs.  the second sample came to my house as I have requested and dad took the test again.  I had spit all over my hands after closing the fucking tube.  Thank goodness for soap.  Anyway, since this was his second sample, color said that they would try to push for his results to be ready before the 3-4 weeks as expected.  As promised, his results were ready yesterday.  A bit under three weeks and my dad’s results are in. My father has tested positive for BRCA2.  We now know who this came from.  I can now say that I have peace in my life and no longer wonder. 

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We are the dangerous Ones

IMG_3385So this blog is extra special to me. On February 11th, I went to a show that was absolutely empowering for me and for so many others who have been touched by breast cancer.  Project Cancerland was filled with women who were affected by breast cancer in one way or another. They had Survivors, Metavivors and two Mutantvivors who walked in the show.  The show benefited an organization called METavivor.  It is an incredible organization that raises money for Metastatic Breast Cancer. 1 out of 8 women will develop breast cancer.  1 out of 3 of those women will develop metastatic breast cancer regardless of screening or early detection.  This is absolutely unacceptable!!! Why does the only breast cancer that kills, get’s the least amount of funds for research? 41,400 people will die from Metastatic Breast Cancer. That’s 310 more women and 20 more men compared to 2017. 100% of the proceeds go to research, 100%!!!!. They do not spend frivolous money for advertising.  All the people who are involved are all volunteers.  

I have met some incredible women at the show.  Dana Donofree you did an absolutely amazing job with the show.  You fucking rocked it out of the ball park. I also met some of the ladies in my support group Mutant Strong! as well as other breasties who were just as amazing.  the atmosphere in the room was filled with so much love and so much of a warrior spirit that it’s just indescribable.IMG_3504.jpg

The after party was hosted in a beautiful loft.  Dana looked amazing in her white dress, but after all she is the boss lady and a designer.  Her dedication to the cause is absolutely contagious.  She herself is a breast cancer survivor.  She created her collection because she, like many of us, left the dressing room crying because no bra was comfortable or they look like old granny bras.  

It was an absolutely beautiful night.  The weather warmed up and the rain let up.  The New York sky was beautiful.  The rooms were elegant and filled with art pieces to be sold at the silent auction.  The party was amazing and the show was incredible, but after all the glitz and glamour wears off, reality kicks in. We still have a HUGE problem on our hands when it comes to Metastatic Breast Cancer.  There is much that needs to be done in order to stop this ugly beast from killing so many of us and our loved ones. When donating money, just please make sure you know where it’s going and how much of it actually goes to research.  Spread the word people. 

#Metsneedsmore #Dyingforacure #Stage4needsmore #Menhavebreasttoo #Mengetbreastcancertoo 

 

 

In Loving Memory of my Breasts

IMG_2662.jpgI decided to dedicate this piece to my breasts, or should I say what use to be my breasts. It donned on me as I was laying in bed last night and attempting to get into a comfortable position with these foobs, just how much I missed my old saggy breasts. what was I was missing here?  I’ll tell you one thing, these foobs may look fantastic and all , but absolutely do not feel anything like my real breasts.

I had my mastectomy in 2014. Fond memories came rushing back to me when I had my actual breasts.  Who would ever known that sleeping on ones stomach would be not only a thing of the past, but absolutely impossible. I thought to myself, what I would give to sleep one more night comfortably on my stomach.  What I would give to feel comfort in my chest, instead of feeling two awkward foreign objects that are just sitting there.  Yes they not only do not feel like my real breasts, but comfort seems to be a thing of the past.

Remember when you squeezed your girls into anything and everything you can possibly think of? Well if you are a mastectomy patient, that is definitely a thing of the past.  There is absolutely no way of squeezing these plastic tits into anything. Also I have permanent pain in my right arm and not to mention the chest from having three lymph node removed due to my cnacer. That is the price I have to pay for being a mutant.  It’s a price that all of the mastectomy patients have to pay.  Having this surgery was a life altering decision. I was more than willing to pay the price for staying alive.

On a positive note, I am here and thriving.  I am much luckier than a lot of our sisters and brothers who are still fighting the good fight.  I am blessed to have a family I love and fur babies who bring joy into my world.  I learned to appreciate the little things in life that I use to take for granted.  I’ve had to learn how to pace myself and leave it for another day.  I feel whole and womanly with my body.  Not that I wouldn’t love to lose 10lbs or so lol.  I have found a new passion for my misfortune for advocacy and helping others. Life is pretty good. I am still going through residual affects, after all my cancer and treatments, but I am managing one day at a time.  that’s all any of us can do. So au revoir boobies and bonjour foobies. May we have a long and beautiful life together.

 

Grey’s Anatomy

So the end of October, beginning of November has been a blessing and a curse.  October 28th was IMG_1267.jpgmy four year chemoversary. No one ever acknowledges the day.  Everyone’s goes about their day like it’s nothing, but I assure you it’s a day I’ll never forget.  The day was filled with cake and some food that I prepared.  I bought the cake for myself  because no one ever seems to acknowledge my chemoversary.  Why aren’t people in my house as excited as I am?  Why?  My husband seems to think that I should just forget about the fact that I had cancer and go on with my life.  How does one forget that they had cancer when I have to see my oncologist every four months, (which use to be every three months).  I have a BRCA2 mutation which puts me at an increased risk for multiple other cancers.  pink and teal water color ribbon

Halloween was fun.  Fun time doing makeup and dressing up.  I handed candy out to kids. Off course I made my yearly annual Mutant Strong pumpkins.  This was the first time that I actually carved the damn thing instead of actually using glue as usual lol.  My son wIMG_1288.jpgent trick a treating and brought home a nap sack full of candy.   IMG_1364.jpg

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Let’s skip to November 2nd.  My 46th Birthday. I didn’t want to do anything to festive because at this point my dad has had two lung biopsies on his lungs.  The family has been so stressed out and on edge.  Back story is, my father smoked for 50 years. Had a heart attack and quit at that point.  It was an absolutely horrible time for our family.  It was a long recovery.  I remember the call 11 years ago in the middle of the night.  My brother called me to inform me that our dad had a heart attack.  I went to wake my husband up.  I shook him so hard that I thought he’d have adult shaken syndrome.  If there is such a thing after all. 

Saturday November 5th. Dad had an appointment with his Dr. I was really anxious at this point.  I was so concerned about what the Dr was going to find.  the dreaded call came from my mom revealing he had lung cancer.  A 2cm squamous cell lung cancer. He has to have a PT scan tomorrow to see if it has spread or if it is contained.  Lung cancer is extremely aggressive.  I’m praying with all I have that it hasn’t spread or in his lymph nodes.  My emotions are all over the place.  I am functioning in a grey cloudy state of mind.  This all seems like a nightmare that I can’t wake up from. How does one ever get over their parent getting diagnosed with lung cancer?

At this point I have completely taken over arranging dad’s appointments. Thanks to my friend April, who has found some of the best doctors for dad to go to, at Sloan Kettering. He has not only had appointments to have scans, but he was also having genetic testing at my request.  When I showed the nurse a copy of my BRCA2 results, her jaw nearly dropped.  The fellow Dr that first came in to talk to dad, just brushed it off.  I was pissed because his main focus was to talk about getting the cancer out, which I here, but still.  Afterwards, HIS Dr came in and one of the first things that came out of her mouth was that she was doing genetic testing on him. His tumor is being tested for over 300 mutations, plus they are running a full HBOC panel on him. Finally!! I have been waiting over four years for him to get tested. His genetic test results will be ready by next week hopefully.

We are now In the end of December.  My father had had his lung cancer removed at the end of November and his pathology came back that the lung cancer is contained.  this is an absolute miracle, because lung cancer is usually diagnosed at a much later stage.  He does not  need any further treatment.  My worst fear was that he needed chemo.  He cannot afford to do chemo with a bad heart. He has a bad heart and bad lungs. Those are two very bad combinations. Today he saw his Dr and she wants to see him in six months.  That’s really great news. This has been a very emotional day for me.  I am so relived but my heart aches for him. This will be a long recovery for him.  He is not exactly a spring chicken.  He is still in pain and is having nerve pain.  Nerve pain can take up to a year to go away.  Let’s hope this isn’t the case for him. Keep swimming keep swimming…

 

 

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Pink isn’t that pretty after all

So it’s Breaspink isn't so pretty after allt Cancer Awareness Month and people have very mixed emotions about it.  I happen to enjoy the walks because I get to see the amazing community that we have rooting for us.  It is also a really good reminder that I am lucky as fuck to still be here and have NED.  Other’s aren’t that lucky.  There are unfortunately women and men who are dying for a cure.  The only breast cancer people die from is metastatic breast cancer.  Those who are stage 4 do not appreciate all the pink shit and I understand why.  When women and men are laying in a hospital bed slowly dying of a disease which is incurable, leaving their children, spouses and families behind, all of this is just irrelevant.  I want to reiterate the importance of checking your breasts whether you are male or female.  Note that early detection is great but doesn’t always work.  It’s not known why some people who are diagnosed stage 1 go on to have metastatic breast cancer, where as others who get diagnosed at stage 3 go into remission. All of this is a great mystery and out of respect for those who are dying for a cure, I would like to ask that you donate money, if you choose to donate, to organizations who give money for metastatic breast cancer research.  Metup.org  gives 100% of their profits for metastatic research.  If we can find why so many people go on to have metastatic breast cancer, we can possibly stop it from happening.

All this being said, let me just bring up one more thing.  Don’t be an ignorant asshole and tell me that I got a free boob job. By no means is this a boob job or even close to one.  I have absolutely no breast tissue in my breasts left, so what you are seeing is very thin skin with a mesh that is holding up my implants, a long with a million stitches, so that hopefully my foob doesn’t drop again.  I may make jokes about it, but you don’t have that right to.  It’s my pain and my salvation, that I was able to have this reconstruction done.  My PS did an amazing job and I thank him for it, but these will never feel like my real breasts nor are they.  On that happy or not so pretty pink note, don’t take your health for granted.  Go see your doctors and make sure you are monitored closely.   Without our health, we have nothing.

Destination unknown

 

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Who the fuck would have thought getting cancer was going to be such a world wind of events? Not me! Not to the point of going from one doctors appointment to another.  There’s the breast surgeon.  The asshole who was very nonchalant with his mannerisms and behavior. You’d think that I came in with a fucking pimple on my ass.  My firs breast surgeon apparently performs needle core biopsies in the office without anesthesia.  Lucky for me that he was unable to do my biopsy because my DCIS was so tiny.  I might have died of a heart attack in the office if he tried to give me one. Well than there was Dr K.  He was the one who performed a biopsy on me.  luckily he used anesthetic on me and plenty of it.  With all that said, that biopsy was less than pleasant to say the least. My Dr was compassionate and patient unlike the breast surgeon. I am terribly needle phobic and came in on 10 mg of Valium.  I was fucking stoned as hell.  I don’t even drink and it was like wo, holy shit girl you can’t even walk straight. Waiting for results are pure hell.  For those of you who have had any kind of biopsies or cancer related tests, know exactly what I mean. What the hell do I do now that I have been diagnosed with breast cancer?  Ah go and see an oncologist why don’t I?  Yes that’s what I was told I needed to do.  So, here I come.  I brought my neighbor with me because I didn’t have the mental strength to go alone.  The oncologist told me at my initial appointment that I didn’t need chemo.  Haha Boy that was going to be a fucking joke in the long run.  He advised me that he was going to run a oncotype dx test on my tumor. Who ever thought my test was going to come back as 25?  Not my Dr! He was shocked as fuck.  Same look on his face as when I told him I was BRCA2 positive.  He didn’t think that was going to happen wither.  Jokes on me. Well what this mean is that I had a low to intermediate chance of getting my cancer back.  I had a 17% chance of reoccurrence. Chemo was going to cut that number is half. So what’s the big deal about that figure? Well that and my BRCA Kaka mutation is what the big deal was.  That and the fact that I was 41 years young. My tumor was 1 mm over.  Yes one shitty mm did me in and was sending me off to chemo land.  Countless appointments later, with another oncologist at Sloan Kettering, the breast surgeon, plastic surgeon. Another PS appointment at Maimonides breast cancer center with a breast surgeon, and plastic surgeon. They all told me what they recommended and what they would do to me.  It’s always nice when you have absolutely no control of what is going to happen to you next. You feel like a small little aunt in a huge world as if someone is going to stomp on you, yikes! I remember clearly crying on my way back home on the train. I was petrified of doing chemo.  Knowing  I had no choice really sucked.  Would I chance not doing chemo over one lousy mm? Just one mm! sigh, no I wasn’t. Anyone who knows me knows that I am no push over.  I feel very confident that I did all my research and that I didn’t just do what my initial breast surgeon told me to do. My persistence has saved my life and brought me to this journey.  Remember, always go with your gut. Know that you are not alone.  There is always that second and like in my case third opinion.  Reach out to other support groups and people who have gone through a similar journey as you did.  Know that nothing is permanent.  You are strong, tenacious and you can do this.  Your destination unknown will be no more.