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.

IMG_4637.jpgIMG_4366.jpg