Showing posts with label Ovarian cancer. Show all posts
Showing posts with label Ovarian cancer. Show all posts

Sunday, November 17, 2013

When is enough, simply enough?

The title is a rhetorical question... on two levels.  I will start with the larger question.

In the past few days, an 11 year old boy was found by a deputy in North Carolina.  He was handcuffed to the porch, and had a dead chicken around his neck.  The video on the story can be viewed here.  You might be saying... "How terrible... Lisabeth... how does this relate?" Bear with me a minute.  If you have the iPad or iPhone app, look at it on CNN/US.  Also, in an AP link that for some reason is eluding me... the information contained in the initial CNN mobile site story is there.  So, between the 3 stories referenced here, and the countless others I have seen over the past little bit, the "Cliff's Notes' are as follows:

  • The perpetrators are both 57 years old.
  • They have 4 adopted children, and one foster child.
  • The foster child was the one who was handcuffed to the porch with the dead chicken around his neck.
  • The woman in the case is a SUPERVISOR at the area DSS.  She is a Department of Social Services SUPERVISOR... Let that sink in for a minute, eh?
  • The police officer that made this discovery was actually enroute to another house when he spotted this.  This was a discovery of misadventure.
  • The man was not cooperative upon being contacted, and one of the kids opened the door and released a dog that chased the officer to his car.
  • When the officer returned, the child was in the house, the chicken was on the porch...
  • In the CNN mobile app this morning (11/17/2013) both a law enforcement official and a member of the press stated that the situation was one of utter misery and squalor.  They remarked on the animals running in and out, and the farm animals roaming on the property.  The entire place stunk of feces and urine, and there was lots of junk...
So- in a word... HOARDERS.  And no one said the word.  And the woman?  In the management chain of DSS.  Wonder how many other children she damned to a life in the shadow of the hoard?  Besides the 5 that are now in CPS custody out of state.  

The upshot is, until all of us as community members make our elected officials, our members of law enforcement, our first responders, et al aware that we consider this to be a form of child maltreatment, and we continue to advocate for the children, there is little hope of a child escaping the hoard without significant trauma, and some do not escape at all.

What can we do?  Advocate.  Loudly.  Many of us, vociferously.  We can contact our housing multidisciplinary teams.  We can contact the Area Offices on Aging, find Hoarding Task Forces, or demand they be assembled, and demand that the focus not be solely on the hoarding person, but on on those in the home as well.

So... switching gears slightly.  I know I have been rather 'on' or 'off' since my surgery in August.  I am still healing, and long story short, things have continued to not be what I would call 'linear'.  

Some of the challenges I have been dealing with include:
  • Continuing to lose muscle mass and drop in weight.  I went down to under 112lbs without trying to.
  • Attempting to catch up and dig out at work, and it has been hellishly busy, and I am still buried from 2 months off.
  • I had an allergic reaction because I am an idiot, (I ate turkey pepperoni despite a text warning me as I was flying low from NY to my best friend's home for his daughter's 3rd birthday party.  I saw the gist of it, but did not connect the dots.  Luckily, I caught it within 3 minutes, purged the 2 slices, and got liquid Benadryl caps that I opened and swallowed immediately.  No epi pen needed... this time.  Now however, I am hoarse, (had NO VOICE for 3 days) and appear to be dead with a cold, although it is not.
  • Went to my specialist who was not aware of the events since June and July.  She FREAKED on me, screaming at me that I was underweight (duh) and needed to gain 12 pounds NOW.  (Double duh).  She disagreed with some of the surgeons decisions, and set me up for nasty and unpleasant tests.  On the positive side, she took me off 2 meds, decreased one in half, and said I should start gaining weight.  I have!  I am staying between 115 and 117 for right now, and I am actually hungry.  And eating!  And now I actually have some energy, and my sleep/wake schedule is resuming somewhat a normal rhythm.  I am losing my 'bracket face' and have resumed the gym, today I did three miles on the stepper.  Not much, but a start.
  • My nerve damage issues have continued to be on or off.  Travel, eating, illness, med changes... it has been UGLY.
  • I had a thyroid/parathyroid tumor scare.  It is not totally resolved, but it is not the frightening issue presented to me last week.
  • Once I am back to near 100%, I will be scheduled for another bone scan, and hopefully, a genetic test to look for BRCA 1, BRCA 2, and other cancer indicators.
Again, I do not need a 'wahbulance' but life has not been all rainbows and puppy dogs for Lisabeth, and I did not expect it to be that way.  I am grateful to be here, to be back at work, to be cancer free.

So... where the piss off at my hoarding mother dearest occurs... 

Last night I attended the wedding of friends.  It was beautiful, and fun.  The reception ended 6 hours later, and since it was relatively early, and I had not talked to her in a few days, I called.  

The call consisted mainly of:
  • Her commenting on how hoarse I sound, and using that as a springboard to talk about her many maladies and to ask bizarre questions.  I will spare you the questions, but they are of the type that comes from someone with nothing else to do but look at every bump, lump, and excretion of her body, and pathologize it.
  • She commented on the 'actress' (GAH!) that had her 'stuff' removed due to her mother dying of 'that'.  She meant Angelina Jolie, the actor and human rights activist, and her mother's death from Ovarian cancer... and her being tested for the breast cancer gene, and getting a prophylactic bilateral mastectomy, hysterectomy and her ovaries, etc. removed.  I made the DIRE MISTAKE of commenting that I would be doing the testing soon and might have similar decisions to make (not commenting that she could have done this under her insurance at no cost and refused a few years ago).  She was appalled, and started her BS about breast implants, cancer, and etc.  I cut the discussion off brutally.
  • She said she had something to tell me that was not pleasant, was disgusting, and I knew she was going to turn to discussing her poo.  Again, I will save you the unsavory particulars... but she asked if I was still having 'trouble' (referring to my partially paralyzed colon).  I very quickly and acidly told her I. DID. NOT. WANT. TO. TALK. ABOUT. IT.  She responded with a rebuke that she is just trying to be helpful, and plowed on with her 'discussion' that I would clog my toliet up like she did today, and then attempted to go into the details of the 'event' and its particulars that caused it, her phone calls to plumbers, the recommendation to buy an acid product (that we have at my shelter BTW) and how she used vinegar to unstop it.  I hung up on her.  
Not that this is to the level of anything near the hoarders who severely abused that child.  But- one thing is similar, and it is this amazing sense of entitlement that they do not have to follow anyone's set of boundaries.  They are above or beyond the law, society's conventions, and the boundaries of appropriateness.  It is always about them, what they want, what they experience, their priorities, and their screwed up narcissistic perceptions.  

What was a lovely evening filled with love, fun, food, music and laughter was eroded somewhat in just a few minutes on the phone.  I should have known better.  When will I learn?  And when is enough, enough?  

Dysfunction flourishes in silence.  Abuse grows in secret.  Keeping the secret... protecting the hoard.  After over 44 years, I am done being silent and keeping the status quo.  

Thanks for reading.

Wednesday, August 7, 2013

Serious illness and narcissism

Sorry for the long delay in posting. I had a very unpleasant medical crisis unfold, and one that was potentially life threatening.  Long story short, I had a huge ovarian tumor that was the size of a honeydew melon in my pelvis.  Keep in mind I am a size 0 or 2 Misses (US) so my pelvis is not that big.  And I did not have a clue.  

Again, the cliff notes of how this situation unfolded are:

  • Lisabeth got sick on Sunday and on Monday night allowed a friend to transport her to the ER
  • At 2am Tuesday morning Lisabeth received this devastating news, and understood that there was a small chance at best that this was NOT malignant
  • 10am Tuesday Lisabeth saw the 1st oncologist
  • Wednesday Lisabeth was scheduled for emergency surgery to remove the mass
  • Thursday Lisabeth saw the Cancer Center oncologists
  • Friday at 5:15am Lisabeth reported to the hospital and surgery occurred, successfully...  The tumor did not rupture, they got it and the initial path report was benign, and Lisabeth did not wake up with a colostomy like was discussed in the Thursday consultation with the surgeons...
  • Lisabeth spent 4 days hospitalized, and is now home recuperating from a large mid line incision 

As you can imagine, the 75 hours between discovery and surgery were similar to being caught in the center of a tornado.  My focus was on keeping calm and not panicking until we knew what I was facing, and I did something different this time.  I reached out to my friends, my coworkers and colleagues, and was very open.  I allowed folks to support me, to express their fear and dismay, to express their love... And they all knew the deal, what I was facing.  They knew that if it was ovarian cancer, what the 5 year survivability of that.  We had just buried my friend on Saturday... the day before I got sick.

Now... as you can imagine, I was torn as to what to say to my hoarding mother.  I had folks giving me different advice... to not tell her anything, to play it by ear until I knew, etc.  

"Hello?  Where have YOU been?  I have not been able to..."

Look.  I have some news.  ... [telling her]...

"[Stammering]But how is that possible?  How did you not know?  How is it possible that something that large is in you?  Okay... one question for you... does your belly puff way out?  Do you look bloated or pregnant??"

No... Why do you ask?

"Do you think that is what is wrong with me?  My belly is over 50 inches!  I am..."

Gotta go.  I will call you when I know more.  
<dial tone>

<Sigh>  So initially she tried to have a reaction that was focused on me, even if it was a bit of 'shouldn't you have known something'/victim blaming in tactic... but then we took a left turn right into narcissism and plowed right into her inability to see me as a separate person from her.  I sat in my car with the most awful, stricken expression before I looked up and caught a peek at myself in the rear view mirror.  

I called on Thursday to let her know that I was scheduled for surgery on Friday, the extent of what I knew, and the hospital, the day and that I would be on a certain floor after.  My best friend was taking me, and I advised her that he would be calling.  She was starting to demand that he call, and if she was not there, to call again... and to ... I cut her off and said he would call, let her know I was okay, benign or not if that was known, and that was it.  He had a huge list to call/text.  

Friday he called her, apprised her I was doing well and that the tumor was initially benign.  He shared with me that she was very emotional, crying, thanking him.  It tore at me a bit, because I again felt empathy for her, sitting alone in that miserable house, not knowing if she was going to lose me today, or 5 years from today... and knowing she always goes to worst case scenario...

My hospitalization was ROUGH.  I did not call anyone, but Friday night my friend gave my iPhone back.  On Saturday the land line in the room rang intermittently, but I could not reach it.  Finally it rang and a nurse handed it to me...

"Lisabeth!  LISABETH!!! IS THAT YOU?  YOU DO NOT SOUND LIKE YOU!!!!! Geraldo never called me back!  He said he would call me back!  I did not know where you were, I did not know how you were, you would not BELIEVE ALL THE CALLS I HAD TO MAKE TO FIND YOU!!!!  I called there several times and no one answered!  It just rang, and rang, and rang..."

Okay- first of all, give Geraldo a break.  It was a really long, rough day, and I cannot believe he said he would call you back... I suspect you told him that as he was ending the call... Second, I told you where I would be, and the reason I have not answered is I am in bed and cannot reach the nightstand where the phone is due to IVs, the Foley, and other things hooked up to me right now.  I am exhausted, and I am ending this call.  If you need to contact me, call my iPhone, and I do have it on silent so if I am sleeping it does not wake me up, and the ringer does not disturb other patients.  DO NOT CALL THE LAND LINE.

Sunday she called the land line.  Luckily, a nurse had moved the phone to the bed for me.  I had a horrific day.  I had to have my IV reinserted, and Foley reinserted.  My bladder and bowels were not 'waking up' and there was no way I would be discharged that day.  I was devastated, I had had a horrible reaction to pain meds, and was again on 'nothing by mouth' status.  She immediately started commenting on how I did not sound like myself, (duh- major surgery and sore throat from being intubated!) and how she could not hear me, asked if I had the phone near my mouth, called back from her cell phone, put her hearing aid in, and then started to berate the neighbors and talk her normal crap.  I advised her the med cart was coming and ended the call.

I will spare you the rest, but I think you catch the theme.  And each time she has deviated into the crazy, I have just ended the call.  I am keeping my phone on silent, so I am not hearing the ring tones/message indicators.  I need peace and space to heal.  I simply cannot deal with this right now.

She has not yet started her whole 'hopeless cancer' routine and made statements about how I am going to die... YET.  She did get fired up the day I told her about surgery say that it was not fair, all I have done is try to help people, and some many worthless people are still living, look at me, look at my dad...

Dear gods it is exhausting.  And I need all the positive energy I can get.  This is going to be a long and physically arduous recovery.  And I suspect, this will continue to evolve as her macabre interest, questions, and etc. will grow and she will start asking vile things.  

My friends were amazed at her, that she would not drive 7 hours to see me.  I am actually relieved she will not, as I do not think I could take it.  So sad, eh?

Hoarding, no one wins.  No one.