Monday, August 26, 2013

From the Mouth of a Hoarder Time.... (FTMOAH!) Week 3 post op for Lisabeth

Today is 24 days post-op for me, (if you are a first time visitor here, please see the post on 8/7/2013 as your interest dictates!) and today marks 3 weeks out of the hospital.  

I am doing very well, and have realized through this recovery a few things:

  • I am not Superwoman, and I am not quite as young and resilient as I used to be...
  • I am, however, doing fantastically well by my and my doctor's accounts, and minimizing my stress level seems to help that by leaps and bounds.  I get stressed past a certain level, and it is like I over-exerted and I am down for a day or two.
  • So- based on this, I have realized that my energy is not endless, it is more like a rather limited checking account.  To make withdrawals, I have to make the appropriate deposits of resting, and the like.
  • The other conclusion that I arrived at is ... as I continue my healing journey and have fully recovered, that there is a lesson to be learned from this.  I must internalize it, and be able to successfully implement it.  That means my interaction with my mother.
I have been keeping her at a distance, and if she is narcissistic, mean, morbid, intrusive or macabre... I end the call.  We are talking maybe each third day, just enough to keep her for calling work, anyone else, or engaging in her terrifying stalking behavior.

I have not discussed any additional issues health wise, and I will not permit her to start to ask 'medical' questions or deflect anything to her.  The conversations for the most part, have been rather surface.  

I called to check in today, and got a dose of FTMOAH. 

She was in a dither.  She stated she had 'made' a TMJ orthodontic device (which she calls an 'orthotic') to keep her teeth apart and her jaw from hurting.  Apparently she has misplaced it in the hoard.  And went into great detail about her travails in attempting to locate it.  During this discussion she mentioned:
  1. She found an entire kitchen drawer full of McDonald's, Burger King's, name-the-US-fast-food-chain-in-Appalachia's soft drink drinking straws, still in their little wrappers.  She asked if the local domestic shelter would want them...  Um... NO!
  2. She also was amused by the discovery, and said she was not sure why she kept all of those, as she goes to McD's for a sweet tea (YUK) and she uses and reuses the straws she gets, and she rinses them out every so often, and gets several days to longer out of them...  <the sound of Lisabeth's head imploding... GAH!>
  3. In looking for something else, she found a brand new toilet flapper that had been in the bathroom a really long time... and asked if they went bad or had an expiration date.  Now, I told her to throw it away, but I know this will come up again, and again.  It has been in her house a minimum of 20 years.  Some of those years with no HVAC.  I can only imagine...
  4. She then stated, "I am not sure how I got all this stuff in here.  I cannot find anything, and I probably do not need all this stuff.  I try to go through something and it does not look like I did anything at all, and I get so tired... "
At that point I ended the call.  I know where it was going.  It was going to 'poor me, no one will help me churn and reshuffle this stuff, and obsess over trash being re-homed to someone that will use it like it was a puppy or a kitten.  

She is also being very good and not 'going there' with many of the areas that are off limits.  Of course, a couple times I called she was so negative and having violent ideations about neighbors that I would immediately end the call, maybe a sentence or two into it.  I am not listening to it.  She does wing some value judgments in, things like 'oh... you are out running around again' and telling me what I should and should not do since she had an umbilical hernia repaired in the early 70's... ugh.  She is always focused on the neighbors, on their incomes, on their choices... It is the same conversation over and over.

So, I am keeping contact minimal, short, and when she makes a swan dive off the diving board of tolerable I end the call.  

I think I may continue this after I return to work, and my normal existence.  Although the longer contact does have a downside, if she is cycling behavior-wise I do not have any forewarning or opportunity to attempt to mitigate it somewhat.  But, that is not my problem.  

Thanks to all my friends and readers for your support, comments, emails, and all the kindness and good wishes.  I am still not 100%, but I am doing well.  And what health problems I am dealing with now as a result of the size of the tumor and the things it pushed against and possibly damaged, I still think will improve, and are improving.  Will I be back to what I was pre-tumor?  Maybe not 100%... but I am grateful for every bit of it.  

I have also not discussed my 'Frankenbelly' with my hoarding mother.  The hysterectomy incision from 2007 is huge, and now I have this even larger one that is just a couple of inches from the end of my solar plexus to the old incision.  The landscape is not smooth.  I have divots, and folds I did not have.  My belly button is down and to the side, and about 1/3 of what it was.  Right now, my abdomen resembles the battleground that it was.  And I am working on honoring, and accepting it as well.  And I do not need any negativity or judgment from her on this.  I am already getting a lot of guff from concerned friends and my doctors about my low, low weight right now.  I know when I start exercising/lifting/running, my belly will change and evolve to a more final state, and I will pick up the muscle weight I have lost.  I definitely am glad she cannot see me, after her reaction to me in April when I was 23 pounds heavier and and she informed me that I was going to die.  

But, again, I am staying focused on what is ahead of me.  Getting back to health.  Getting back to work, and staying balanced this time.  Getting back to my work out regimen.  And I have to focus on the positive.  I have a shining example, 7 hours away of what focusing on the worst gets you.  

Have a great evening to everyone!  Oh... and her did-it-herself-because-she-will-not-pay-for-a-professionally-fitted-TMJ-device?  I suspect that it is a pencil, wrapped in packaging tape, with some sort of headband on it.  Maybe I should go to a BDSM website and send her a pony-bridle gag?  <Evil Lisabeth...>

Friday, August 16, 2013

Two weeks post op- and doing well! Mother however...

Today is 2 weeks post op from my emergency surgery on 8/2 (for the full story, see my 8/7/2013 post) to remove a Fallopian tumor the size of a honeydew melon or a medium sized, fully inflated balloon, and I was released from the hospital 4 days later.

Friends stayed with my until I could be on my own, and the cards, the flowers, the fruit baskets, the other deliveries, the texts, calls and emails have been wonderful, and overwhelming in a very touching way.   The support, comments and emails from my readers has also been so appreciated.  

The first day home, I was EXHAUSTED.  But, I knew that my hoarding mother would unleash all kinds of crazy if I did not let her know I was out of the hospital.  (She had tracked me down and was calling the land line at the hospital during my stay... and I feared she might call my best friend who called her after surgery, might call my work... who knows...)

I called her.  I let her know I was home, that my good friend had picked me up, and another friend was en route... and that folks were 'sharing' time until my friend arrived from out of the area, where she would be staying for a few days.  My mother began to immediately go on about the last time she spoke to me, how bad I sounded, how the call quality was so bad, how she could not believe I had the phone up to my mouth... and on and on about nothing.  I advised her that I was quite worn out, and was going to bed.  

"Well- I need to inform you of one important thing that I did not tell you earlier before you get off here, so wait just a minute."

Make it quick.  I am fading and my incision is screaming at me at the moment.

"Remember the wind-chimes that your father's mother had?"  


"Remember the scale my mother had to weigh clothing before she put it into the washer?"

Huh?  NO!

2 more questions of that nature...

Get. To. The. Point.  I am hanging up in 90 seconds.

"Well!  Guess where all those items are!  Those wind chimes are yours, and were [buried in the garage hoard for 24 years] in some stuff here.  They are on the thieving ba$t@rd's front porch.  I can see them from here!  I could just stand and watch as someone took a meat cleaver and sliced him into ..."

I hope he enjoys them.  They were god-awful ugly and were actually a gag gift for grandma.  I don't care.  Hanging up now.  <click>

A couple days later, I was going a bit stir crazy and my friend took me to a little pizza shop just a couple of miles down the road.  It wore me out, but I was glad to get out and do something 'normal'... even something as mundane as getting a pizza.  While my friend and I were there, a co-worker texted, and asked if she could call.  Long story short, mom called my place of business, and was fishing for information.  I called her and called her out on it, and she was minimizing, evasive, and quite bluntly, full of crap.  I ended the call.  Grrrrrr.

Last Tuesday I had my first follow up with my oncologist/surgeon.  I was hoping to receive my final pathology report on my massive tumor, and get some answers on my BP bottoming out and me passing out when getting out of bed in the morning.  I had also lost 10 lbs from when I was discharged from the hospital, and was losing a pound to two pounds a day.  The following day, I would have an appointment with my primary care physician.

I continue to be one of the luckiest people on earth.  Final path report... BENIGN.  I am going to be okay.  It was reinforced at the cancer center, and at my PCP's office by the staff stopping by to give me a hug, to ask questions, and to express how incredibly lucky I was, that I beat the odds.  Without the family history and my personal health history, there was a less than 15-16% chance that my tumor could be benign.  With the other factors... it looked even more grim.  And I get that.  I understand it, and I am still processing it... and suspect I will be for a while.  The other issues should resolve in time, and I was instructed to not lose any more weight (Um... OKAY... Not trying to lose any now)... and that the BP issue may resolve, and some very likely possible causes, and one of the other likely issues may NOT resolve.  I may have to sit on the edge of the bed for 5-10 minutes from here on out so I do not pass out when my feet hit the floor.  I can deal with that...

So... I call my hoarding mother to let her know the good news.  She is not home, and she no longer allows her answering machine to pick up.  So it just rings until the mechanical voice asks for the access code.  

I called her a couple of days later.  She had a litany of physical emergencies that had to be dealt with NOW!!! And were in the defcon range of mortality... for her.  A toothache from a loose filling... Suspicion that normal questions asked of her by the radiologist prior to her MRI were harbingers that she has a serious tumor too!  And the like.  The thing that sent this call off the reservation was she asked what I had posted on Facebook about this, as the neighbor 'down back' had called her from vacation and had asked if I was okay.  

"Well... I did not not know what you put on your Facebook thing so I just said that you had some sort of cyst and had it removed and things were okay now."  I advised her she could have just told her, it was not a secret... "Well-she hardly ever calls here and ..."  Never mind that.  I got my results back.  Final path was good.  And I need to go.  <click>

She cannot stop herself.  It always has to be about her, and nothing exists in this universe except as a supporting role in her life.  The neighbor called me.  She was concerned, and I told her the 'Cliff Notes' deal and she was horrified.  She was pissed that my hoarding mother made it sound like I had a skin cyst or something minimal removed, instead of major, major surgery.  She was frustrated at her secretiveness, and her inability to reach out and to seek support for herself.  She was also frustrated that my mother simply could not be a mother.  Could not come to help, could not focus on what I needed... just could not get out of her own way... or away from the hoard.

We had a lovely conversation, and the neighbor mentioned that my mother had went to the garage, was churning and fell.  She did not have any details, but mother had been referring to it somewhat obtusely yet dramatically.  I know that I am going to get whaled with it soon.

Again, I am so sorry that her life is so full of resentment, unhappiness, and lost opportunity that she cannot engage in anything other than her soul sucking narcissism.  I am 2 weeks into what will be at least 8 weeks of recovery.  And this has not been an easy one thus far, although I am doing very well, and will happily take what I get.  My recovery is not linear, and it sometimes is a large step forward, a half step back, an another step to the side, and forward again.  I am just so happy I am not:

  • Dealing with a cancer diagnosis
  • Dealing with radiation or chemo
  • Dealing with a diagnosis with a very poor viability 5 years out
  • Dealing with a colostomy and even more physical limitation and disfigurement
I am thrilled I am going to be OKAY.  Lisabeth now has a bit of a 'Frankenbelly' and I am grateful to that belly, and will give it the respect due it.  I am so happy my life is not transversed by a diagnosis 'before and after'.  

But- maybe there is a 'before and after' here.  I was in the center of the tornado, confronted by my worst fears for myself.  Hurting those I love by being sick, serious/terminal illness, disfigurement, leaving this earth and leaving my elderly cat and my 'tweak' cat, losing my career... losing everything I had spent a lifetime working towards that I used to define ME.  I again have had what is important, forcefully shown to me by threat of losing it all.  

Some of my friends refer to me as 'unbreakable' due to the things that happen, and that I often overcome to be in a better position.  I have laughingly referred to myself as more of a cat... (I will spare you the Maggie the Cat quote from 'Cat on a Hot Tin Roof' with Paul Newman and Elizabeth Taylor) and with some of the experiences posited I have used up about 5 of my 9 lives.  

I think this last challenge may have used lives number 6, 7, and 8.  I just might be on life number 9.  And I want it to be full, meaningful, and real.  I want to be happy.  I want to be able to be vulnerable when I need to.  I want to be brave when I need to... Not just because I have nothing else but that to give at the moment...  And you know what else I want? 

To do everything in my power to make this life COUNT.  

I am going to take the recovery time to heal my body, and not just the 8 or 9 inch mid line incision.  I also want to heal my core of ME.  

To be continued...

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.