….Than it actually is…

over-thinking

I have been one morose woman lately.  Just meh.  This whole hysterectomy had me in a twist, but I couldn’t really figure out why.  I have every confidence in my surgeon, I’ve had many surgeries at the facility.  Was I feeling the slow stroll of mortality?  Was I just being to self-involved?  I was killing myself trying to hash it out in my head.  Then, last night, it hit me.  It hit me like a ton of bricks actually.

On Wednesday the 25th of February, I will no longer have the fixins’ to make another child.  I have always wanted a second child.  But, life goes a little something like this:  you see your own family and friends struggle with parenthood at a young age, so you actively avoid it.  Possibly you are with Mr. Right Now and you purposely avoid it.  Then you meet and marry the other half, you are both in your late twenties and are all “LETS HAVE ALL THE BABIES EVER!!!!”.  Then you fight about stupid things and decide to wait, then life occurs a little bit more and suddenly you both need to take a step back and reassess.

The reassess portion is by far the trickiest part of life.  You are both living independent of each other, making good and bad choices.  If you do talk, it comes from things that are deep wounds, and you are both so mean to each other.  You say things that you wouldn’t say to your worst enemy.  On the chance that the sun does peek though, and you can act like adults, wounds heal and calmer heads prevail.   You then enter the second “honeymoon” phase, just a little older and wiser.

You go back to doing adult things, paying bills, having jobs, keeping a home, making big decisions like “which 3 for 1 special should we go to tonight”?  The path isn’t always rosy, but you can (99% of the time) traverse things like adults, both sides conceding at the proper time.  It’s about being able to work together, even if ideas and beliefs are different.  My way or the highway is just a waste of time.  Why would you marry someone, knowing they are SO different that you would want to change them?!?!?!

As you glide into your early 30’s things start to happen, pap smears come back irregular, which requires a whole host of unpleasantness.  The doctors tell you “babies are probably not possible”.  You mourn and move on.

Then, after one particularly flagrant night of consuming many 3 for ones, the woman wakes up and tries to pick out what needs to be done that day.  You start to think about woman things, do a little hand math, then rush to the bathroom.  You grab the almost aged out home test, and do that thing you do.  While you immediately see the two-line positive test, you think – did the excess that I drank last night doom our whateveritisatthissecond?

The husband is already up and watching TV and giggling about the “THAT WAS SO FUNNY…do you remember…”.  He spies the look on your face, you know, the one that looks like you’ve just seen a ghost and urgently asks “what’s the matter…?”  He sees you literally holding a stick that has your pee on it, and there is an electric moment of “I can’t believe we did it”.  Then you force him to go buy more “to be sure”, they are all positive as well.  You see doctors who ask alarmingly private questions (was this planned? are you safe at home? is the father in the picture?), who confirm, for like the 10th time, that you are indeed, pregnant.  Then they ask if you want to see the babies heart beat and you are all “AWWW YEAAAAHHHH”, until they pull out that enormous wand to cram up your naughty bits.

Being pregnant was a breeze for 6 months, then things go wrong.  In and out of hospitals, can’t regulate blood pressure, the this and the that’s that are all super scary when you are growing another human.  Then at 8 months, your perinatologist very calmly asks you “how would your like to have your baby today?”, YOU ARE SOOOOOO DOWN WITH THAT.

Baby comes: what do you know, those many, many, many, beers you had the night before you discovered you were pregnant did not turn your too perfect angel into a frog.  Doctors warn, “a second child is risky, but if you try, sooner rather than later, ok?”.  You skip off having just had a perfect child, and forget every damn precaution.

Fast forward 7 years, you have finally scored a really good job.  You start getting the coveted insurance.  You start to think “women have babies at 40 all the time.”  So, you start seeing doctors who want to do the tests because “you are turning 40”.

Fast forward 2 months, you are sitting in your office and your boss enters your doorway just as you answer the call that changes your life in a second “yeah, you have cancer”.  Everything you have ever planned, or wished for crumbles at that second.

So you do the surgeries and you take the prescriptions that “protect you”, only to find that while this stuff was protect the one thing, it’s actually colonizing a riot on your lady parts, but it was a small colony of one.  You and one of your many “ologist” doctors agree that waiting and monitoring is best.  Phew…right?   3 months later, it is a larger more menacing colony of eight.  Your ologist says “no more waiting, the time is now”.

Quicker than you can light a match, having a second baby is gone.

Then I torture myself with “shoulda wouldas”.  Then  felt guilty for not giving Maegan that sibling she pleaded for with those big, blue eyes.”

Then you turn to your husband and verbally vomit all of these different marbles you’ve had banging around your brain box.  The millisecond before you go start zipping around like a balloon with a loose valve, he looks at you and reminds you that it was almost a sure thing that me and a 2nd baby would have died.  He reminds you that there is no improving on the perfection of your first.

Then you realize (for the first time in print): he is right.  Then your first child walks into the room and says “are you ok Momma?”.  You know at that second it was you that painted yourself into a corner by over thinking.

This is me, getting over my myself.

Love and light,

Jen

Advertisements

I’m back?

Hi.  Been a while.  I am embarrassed that it has taken me so long to get out of myself.  I don’t think I really am all the way out of myself yet either.

I would love to say that I have been doing fabulous things, and some things have really been fantastic.  But, the one thing every person that has ever had cancer (so, that could be slightly exaggerated), they say “Don’t let cancer change you”.  In the beginning you so totally believe that it won’t.  But it does.  Some people change for the better, some people not so much.  There are people who have become pillars of communities, they have made strides.  That is something to be proud of.  Jim and I raised over $2000 with out Night with the Breast of Intentions, that is something to be proud of.

But there is a dark side.  This is my experience:

1.  Cancer totally fucks with your self-esteem.  I never had a high opinion of my physical self to begin with, but now that my chest looks like Dr. Frankenstein has had his way with me…I do not blame anyone for cringing or just plain old not looking.  There are people with the absolute best of intentions that are trying to help you that wince.  You know the wince is reactionary, and by no means cruel, but each wince each “OMG!” is like the slow drag of an industrial size file.  Each pass back and forth removes a tiny layer of how well you think you are bouncing back.

2.  A cold is not a cold, a yeast infection is an ordeal, a fever is nothing to be ignored.  You can never just “have a cold” – it requires chest x-rays and fluids.  Stomach pain – FUGGEDABOUTIT, that is MRI or CT and fussing and poking.  In turn everything else in your life falls to someone else.  Someone else is always pulling your weight, which brings back the slow drag of an industrial file, taking more layers.  You can only say you are sorry so many times until is becomes hollow.

3.  You never feel “right”.  In my experience, they are certain levels of shitty that are my daily experience.  You could liken it to a Defcon scale:

Defcon 5:  You are eating and keeping it in, always a plus!

Defcon 4:  You are keeping some things in, but you have a dull ache literally anywhere, at anytime.

Defcon 3:  Anything could happen.  You could be poopy pants, or headache girl, or BIPOLAR RAGE MACHINE to people who have done nothing.  If you try, VERY VERY hard, you can keep it in check.

Defcon 2:  People are ready to call the CDC on your ass.

Defcon 1:  People DO call the CDC.

There are some days that I stay at one Defcon, there are some days I experience all Defcons.  This also brings that slow, dubious drag of the industrial file, turning layers to dust.

4.  As much as people say it will never change relationships, it does. You really do find out who your true friends are, every bond you have is tested. A few are tested to the breaking point. You say things you don’t mean, you do things you usually wouldn’t. Which brings back the slow, dull drag of the file, sloughing away a teeny bit more.

5. You spend obscene amounts of time at one of your many doctors. Copays, waiting, stares from people because I am usually the youngest in the joint by 20 years. So many times, well-intentioned grandma and grandpa ask which elderly relation I am waiting for. When I tell them I am the patient, they almost recoil in horror. That brings…..you guessed correctly, that damn file.

I could go on, but this has turned into horribly depressing post.

Let’s end this on a high note.

One of my nieces, we shall call her Bean, has achieved so many fantastic things in her life. She has a Master’s degree, obtained while having 3 small children and no, I mean virtually none, I mean some help from Mr. Bean (not the famous one). Until recently, she worked on average, 85 hours a week, with the help explained above.

Somehow, she wrote a book. It’s in the YA fantasy realm. She has talked for years about writing a book. Well my friends, she has finished it. Bean sent me an electric copy, and just sat for a bit. Me being so blasé, and wrapped up in myself and all.

I finally opened the file on Friday, I found this:
image

WHAAAAAAAAAT? A first line dedication. I could tell you I just cried a little, but I bawled like a baby. I am so proud of my niece, and honored that she would dedicate me. I love you my baby Bean. May this be a start to a new path.

Love and light,

Jen

WHAT DID YOU SAY…..

I tell ya, some people just do not make any sense to me at all.  I have an appointment with my new OB/GYN Oncologist tomorrow.  So, instead of getting a jump on things, the new office tries to call my regular oncologist and my regular (….or should I say former) gynecologist to get my files, today.  Havoc ensues.

My phone rings, and it’s the regular OB/GYN (herein referred to as ROB), and did they have a mouthful.

ROB: Hey Jennifer, I wanted to talk to you about this request we got for your files to go to Dr. Chase.

Me: Ok.

ROB: So, should we just take it that you are transferring out of our practice?

Me: You should take it that Dr. Chase needs to review my file.

ROB:  Well, I don’t think I can fulfill this request.

Me: Why?

ROB:  Because I don’t think Dr. Chase is going to be helpful, you should stay at this practice.

Me:  That isn’t your decision.

ROB:  Well, I just…well, I would like for you to….

Me:  Look, if I have to leave work to drive 45 minutes to get my records because you won’t fulfill the request that is in writing, I am going to be VERY  upset.

ROB: Well, I am just looking…..

Me: Not to mention VERY ILLEGAL….

ROB:  I will get those records out right away.

Me: Thank you.

THE NERVE of that office.  I don’t think I could ever go back and take her seriously.  Yes, she is a doctor, but has NO RIGHT to question my decision to get another opinion.  Seething doesn’t even cover how mad I was.

Moving on.

It is a mere 5 days until The Night with the Breast of Intentions.  I am super excited about the prospect of raising money for a great cause.  I am kind of up against the wall in a preparedness way.  I had this spectacular idea when this came about 7 months ago that I wanted to make some of the raffle/purchase items.  I feel the need to show my appreciation for those who can make it out.  Now, pretty much every night this week will be spent painting something, putting jewels on something, gluing something, ribbon shooting out of my eyeballs, pink Mason jars waiting for something wonderful to happen to them.  I really have no one to blame but myself.  I’VE ONLY HAD MONTHS AND MONTHS TO PREPARE…..jeez, what do you want from me?

Love and light….

Jen

TGIF

DREADED!

The title is actually deceptive. I ACTUALLY have some good news to share.

As it turns out, I do not have ovarian or uterine cancer. I should be thrilled! Until the doctor amended that sentence with “…yet”. Nothing like raising me up, only to kick me in the naughty bits.

The phone call went something like this, only after a series of calls to them, and promises that they would call back:

Doctor: Hiiiiii Jennifer, hey, can you come in before then end of the day? I really want to talk to you (this is the DREADED).

Me: SSSIIIGGGHHH – No, just give it to me straight, I don’t need to drive 45 minutes in full panic mode for bad news.

Doctor: Oh, no, no, no…..I wanted to talk about your oncologist. I feel her course of action is too harsh (see previous post), you are only 40 years old, shouldn’t be thrown into menopause so early. It causes hot flashes……

Me: LOLOLOLOLOLOLOL – we have met before?  I have tried to talk to you and alllllll of my other doctors about what I think is hyperhidrosis, only to be ignored.  Hot flashes are the least of my concern.

***(I hadn’t really voiced this concern, but this doctor in question is just a straight up OB/GYN, and I feel she is a little out of her depth when it comes to the complexity of the situation.  As discussed in the previous post, I have been taken off all of my estrogen suppressors (what I call cancer meds).  It was causing blood clots, etc.  To be off of a suppression therapy is the absolute WORST thing right now.  But, I can’t go on a different therapy because I still “cycle” (you ladies know what I am talking about!). My oncologist wants me to have either a chemical or a surgical hysterectomy.***  Back to the phone call:

Doctor: LOL…um….well, what I want you to do is to come into my practice once a month for biopsies, we can monitor the growth of the tumor and…..

Me: Uuuuhhhh, so it is cancer?

Doctor: Oh, no, no, no….not yet.  But I do want to keep a very close eye on it, so when it becomes cancer, we can get it out, right away. That would be monthly biopsies…

Me (getting more that a tad testy at this point):  Doctor – with all due respect, I cannot endure that procedure once a month.  Even your typical pap smear is very painful to me (TMI: I have a tilted uterus).  This is not a very appealing option,  Instead of getting a jump on what isn’t cancer “yet”, you just want to poke and prod and aggravate the thing until it does?

Doctor: Wweeeeeelllllll, when you put it like that…no, it doesn’t sound good.  But, I really do think that this is a better option than you having a hysterectomy and becoming a drug addict…. (!!!!)

Me: What the hell…..

Doctor: (breaking pretty much every HIPAA law) goes on to tell me a story of a DIFFERENT, NOT ME patient that was in my situation 7 years, and she just got a hysterectomy this year, now she calls every week for pain meds. on and on and on.

Me:  (choosing to NOT scold her for assuming I would be taken over by pain meds):  What about getting back on a repressor therapy?

Doctor:  It can wait for now.

Me: That isn’t what my oncologist said.

Doctor: That’s because oncologists just want to cut it out.

Me:  Doesn’t that eliminate the risk?

Doctor (sensing I am not going to bow, tries to employ scare tactic): Yes, it eliminates the risk of uterine and ovarian cancer.  But, with your gene mutation…..

Me: Yes, my mutation is connected to an increased risk of uterine/ovarian cancer, as well as pancreatic cancer.  I know that.  But you just told me that whatever the hell is on my ovary is not cancer “yet”.  Why can’t I have the hysterectomy and eliminate all of the PRESENT risks?

Doctor (thinking I am dumb): Well, without your reproductive system, you can’t have anymore children.

Me: I am VERY well aware of that.

Doctor (realizing I am smarter than the average bear): Sssiiiiggghhhh – Jennifer, please just try my therapy regimen for 6 months.

Me:  You do realize that when I had my first well woman exam, THE SAME MONTH I WAS DIAGNOSED WITH BREAST CANCER, there were no cysts or tumors or ANYTHING on my ovaries, now there is, and you want to “wait and see”.  It just doesn’t make much sense…at all.  Not to mention is constant pressure in the area where this thing is….

Doctor: Jennifer, my way WORKS!  You will see, stick with me.

Me:  I am going to consult my oncologist.

Doctor: OK! We await your call to get started.

By the time that phone call ended, I just wanted to cry.  My oncologist thinks my OB/GYN is a quack, which may very well be true, but it’s the same woman who probably saved my life by making me get a mammogram.  During my last visit to my oncologist, she had already suggested I see an OB/GYN oncologists, because of the likelihood of me having a hysterectomy.

Pardon my language, but who wants to fuck around on “wait and see”?  Yes, it’s GOOD news that whatever is on my ovary isn’t cancer, “yet”, but I don’t understand why I should wait until it is critical.

So, I have added another “ist” to my list, and I see her on Tuesday.

Love and Light –

Jen

 

State of the state – for today anyway.

Settle in, this is probably going to be long.

I have struggled on how much to share about this new thing.  Outwardly, I was very much like “hey, whatevs”, but inside I am heartbroken.  Here is why –

Since the beginning of July, I have been hospitalized twice because of “superficial” thrombosis (blood clot) in my left forearm.  This plays in more so a little later, but I wanted to explain this chronologically.

I was FINALLY able to get the genomic testing done.  Insurance was the hold up, and a whole host of people I know have issues with insurance and the hoops they erect.  I have had it pretty easy in terms of insurance, for the exception of the genomic testing (the specific information about what genes were evaluated can be found here).  Although annoyed, I jumped through the necessary hoops and finally got it done.

The results have returned, and in a very basic nutshell, the results for the BRCA 1 & 2 gene were inconclusive.  This is not uncommon, there are a million reasons for inconclusive results.  However, I do have a mutation in the PALB2 gene which literally stands for Partner and Locator for the BRCA2 gene.  The mutation has been classified as “variant of unknown significance” which means that they are unable to pin-point if this gene is what caused my breast cancer.  Believe it or not, only 5 to 10 percent of breast cancers are caused by hereditary genetic mutations.  In my case, I got breast cancer because that is just how it happens, my own genes mutated that way.  There are many groups that have many opinions on what causes breast cancer.  The more popular culprits tend to be the environment, obesity, lifestyle habits such as alcohol or smoking.  I believe that there is a history of cancer up and down both sides of my family, statistically one or more of us kids (I am the youngest of 6) would get cancer.  It’s not the fault of me, or my parents or my grandparents.  Every single one of us harbor cancer cells in our body, it’s all about how they choose to mutate and multiply.

So, I saw my oncologist September 12th.  Dr. Mendonca really didn’t have any good news.  First of all, going back to the blood clots, it seems that the series of “superficial” blood clots have now evolved into deep vein thrombosis, which is bad.  If I were to throw a clot, I could have a stroke, or it could travel to any one of my organs and cause major damage, even death.  Since the beginning of the blood clot ordeal, it has been the opinion of a team of oncologists that they were being caused by the hormone therapy (I called it my cancer drug) Tamoxifen.  Tamoxifen works by being antagonistic (suppressive) to estrogen.  My estrogen levels need to be suppressed because increased estrogen levels can help cells grow and divide too rapidly.  Your cells in your body grow and divide as many times as needed and then stop they then attach to other cells and stay in place in tissues. Cells become cancerous when they lose their ability to stop dividing, to attach to other cells, to stay where they belong, and to die at the proper time.  To make this long story even longer, it was decided that I would have to stop taking Tamoxifen that day.  It was obvious that it was too much of a risk to keep on taking it.  In place of Tamoxifen, I was put on Xarelto, a blood thinner, to decrease my chances of throwing a clot.  Of course, Xarelto is the newest oral anticoagulant, so it is at the top-tier of my pharmacy benefits.

Unfortunately, there is not another suppressive therapy I can take because I am pre-menopausal.  We then discussed options to bring on menopause.  Menopause happens 3 ways, naturally (I am 10 to 15 years from that), chemically induced, or a hysterectomy.  We haven’t made a concrete decision on the direction to take, but waiting 10 – 15 years isn’t an option.  Chemical induction isn’t ideal, because it will still take months to complete, which means more months without estrogen repression.  That leaves just one option.  Hysterectomy.

Jim and I have known for a couple of years now that baby number 2 was not in the cards for us.  There are a lot of little reasons, like the fact that kids squeeze every dime out of your bank account.  To the bigger reasons, I had a very debilitating case of PPD after I had Meagan, the last 2 months I was pregnant were spent trying not to deliver a VERY premature baby, and she was still a month early.  But if were to have gotten accidentally pregnant, we would have taken precautions with my health and would have happily made it work financially.

But, knowing now that NEVER having another little one is the hardest part.  Tell me I can’t do something and I just want it more.  I had envisioned Jim and I having 2 kids, but knowing now it will absolutely never happen makes me so sad.  Maegan has BEGGED me for a little sister or brother for the last two years.  Her reasons ranged from having someone to play with, to having someone she can teach “family things” to, to having someone who “understands her like a little brother or sister could”.

That’s the state of Jen, at the moment.

Love and light –

Jen

Hard is hard

I have a more updated post in draft mode now, but this, is worth a watch.  Tears were shed….

My selected favorites:

To quote:

“I think we all have closets, your closet may be telling someone you love her for the first time. Or telling someone you’re pregnant. Or telling someone you have cancer. Or any of the other hard conversations we have throughout our lives. All the closet is, is a hard conversation. And although our topics may vary tremendously, the experience of being in and coming out of the closet is universal. It is scary, and we hate it, and it needs to be done.”

and more:

“So really, my closet is no different than yours, or yours, or yours. Sure, I can give you 100 reasons why coming out of my closet was harder than coming out of yours, but here’s the thing, hard is not relative, hard is hard. Who can tell me that explaining to someone that you’ve just declared bankrupcy is harder than telling someone you cheated on them? Who can tell me that his coming out story is harder than telling your 5-year old you’re getting a divorce? There is no “harder”, there is just “hard.” We need to stop ranking our “hard” against everybody else’s “hard” to make us feel better or worse about our closet and just commiserate on the fact that we all have “hard.”

At some point in our lives, we all live in closets, and they may feel safe. Or at least, safer than what lies on the other side of that door. But I’m here to tell you, no matter what your walls are made of, a closet is no place for a person to live. So why is coming out of any closet, why is having that conversation, why is it so hard? Because they’re stressful. We’re so concerned about the reaction of the other person, and understandably. Will they be angry? Sad? Disappointed? Will we lose a friend? A parent? A lover? These conversations cause stress. So let’s kick out on stress for a minute.

Stress is a natural reaction in your body. When you encounter a perceived threat, your hypothalamus sounds the alarm, and adrenaline and cortisol start coursing through your veins. This is known as Fight or Flight. Sometimes you rumble, sometimes you run. And this is a totally normal reaction. And, comes from a time when that threat was being chased by a wooly mammoth. The problem is your hypothalamus has no idea if you’re being chased by a wooly mammoth, or if your computer just crashed, or if your in-laws just showed up on your doorsteps, or if you’re about to jump out of a plane, or if you need to tell someone you love that you have a brain tumor. The difference is the wooly mammoth chases you for what, maybe 10 minutes. Not having those hard conversations, that can go on for years, and your body just can’t handle that. Chronic exposure to adrenaline and cortisol disrupts almost every system in your body and can lead to anxiety, depression, heart disease, just to name a few.”

And lastly:

“So the next time you find yourself in a pitchblack closet clutching your grenade, know that we’ve all been there before. And you may feel so very alone, but you are not. And we know it’s hard, but we need you out here, no matter what your walls are made of. Because I guarantee you there are others peering through the keyhole of their closet looking for the next brave soul to bust a door open so BE that person, and show the world that we are bigger than our closets, and that a closet is no place for a person to truly live in.”

Well, what did you think it was about?

Fifty Shades of Grey. I’ve read the series, and undoubtedly a lot of you have too.

If you SAY don’t know what that is, you are a liar. If you have read the books, or talked to anyone who has read the book, or even just peeked at the internet since the popularization of the books, you know what the series is about. In a nutshell, boy meets girl; fierce sexual tension ensues; he’s all “no I’m a bad man”, she’s all doe eye; he admits to her that he is actually into BDSM as a dominate, looking for a subordinate; she thinks; then is all “enlighten me”. Havoc ensues.

The sizzle real for the highly anticipated E.L James book adaptation was released a few days ago. The actors are young and good-looking, a new version of Beyonce’s “Crazy in Love” oozes in the background (she isn’t my bag, but the version of that song gives me goosebumps). Things seem to progress as they do in the book, along with Ana’s introduction into the “Red Room”. Aaaaaaaand end preview.

There are two particular groups, Morality in Media and the Parents Television Council (PTC) have really lost their shit over this trailer. (Sidenote: I remember writing MANY papers in high school denouncing the PTC; to the point where teachers were all “ENOUGH ALREADY”!!!!) Both groups are essentially saying that this movie will set fire to the earth and all of us will burn in damnation for allowing its release. No….close, but no.

Morality in Media has said that the movie encourages and sensationalizes BDSM. Here’s what I say – NO SHIT. PSSST – that’s what the book is about…not tea parties and square dancing. Then, show me ANY media that doesn’t sensationalize. That is almost the sole purpose of media is to sensationalize. If you are so repulsed at the thought of anything other than married, missionary sex, then you need NOT read the book or see the movie. That is pretty simple. Don’t read the book (MILLIONS already have), do not go see the movie (there are MILLIONS that will), but don’t you even think about telling what is good or bad for me.

The Parent Television Council has bashed NBC for showing the preview on The Today Show. They are also calling for the movie to be rated NC-17; which, in a lot of cases, would be a death sentence to a movie. Except for this one. The PTC has denounced the book and movie as Mommy Porn. Here is what I say – NO SHIT. The book was marketed as erotica, targeted at adults. This movie wouldn’t have been given $40 million to be made if people didn’t want to see it. So, to the PTC, here is my advice – throw the blanket of righteousness over those YOU love and control, keep it far away from me. Also – since your sensitivities can not handle a pretty tame movie trailer – DO NOT GO SEE THE MOVIE.

Can’t these groups see that there are larger issues in the world besides trying to censor what we watch and read?

Watch if your fragile eyes can:

xoxo – Jen