Saturday, July 30, 2016

The whirlwind that has been the last three weeks...

The past three weeks has been a whirlwind.  My last couple of posts were full of medical uncertainty and the unexpected loss of my sweet little cat.  

First the medical update on me.  I returned to the teaching university hospital to have further testing and to continue to develop a plan for potential further intervention.  Long story shorter after additional ultrasounds and testing.  

  1. The mass on my ovary ruptured before my 7/8 consult, that is most likely what caused the 'Exorcist' bouts of vomiting and pain.
  2. I do NOT have a fallopian tube on my sole remaining right ovary, as I tried to tell the doctor in my area, and who would not listen to me.  The mass they are seeing is not something on the tube, it is a large amount of fluid in my pelvis that is trapped around that area due to the large amount of scar tissue/adhesions/endometriosis that I have.  
  3. The amount of fluid is significant and should be removed, but it is not increasing.  It is what is causing the pressure and pain I am experiencing in my lower right quadrant of my pelvis.
  4. The other symptoms, including grinding fatigue, bloating, and GI issues is not appearing to be related.  
Now- the game plan is as follows:
  • I will keep the appointment with the GI clinic, and they now have more testing and data.  My blood work and cancer markers were disgustingly normal.  This is good news, little to no concern of ovarian cancer.
  • I will continue to call every week to see if I can be seen sooner.
  • The referring doc will work with the GI clinic to see if they can develop a plan to remove the fluid without opening me up surgically, perhaps via a large cannula as long as they can avoid the bladder and the bowel.  Scar tissue, etc. and the fact that nothing is where it is supposed to be makes this a bit more complicated.
  • If they do have to open me up for any reason, the ovary will be removed.  Boom.
  • They are working to rule out Crohns and IBS, and my primary care doctor (not jerky, mansplaining, I-will-not-look-at-records-nor-listen-to-you-doctor who was going to open me up with a defective surgical plan) will continue to work to rule out MS. 
Not thrilled with the fact that any of these three options are what is on the table right now, but both Crohns and IBS run strongly in my family.  I am hoping to avoid surgery altogether even though that ovary could be problematic at any time in the future.  I still am in the place of 'waiting for the other shoe to drop'.  

I am making dietary changes, and am working gradually to resume a vegan diet (that in part, helped me on my journey to lose over 130 lbs and ease some of my PCOS and endocrine issues), and having started the changes in the past couple of weeks, I am seeing some improvement with the fatigue and the pesky GI stuff.  I am starting to push myself more in my running, and I am aiming to resume training for a local marathon in the late Fall.  My running had decreased 33% (mileage) but I am going to work on that.  I know truly understand 'spoon theory' and I know that my energy is not (seemingly) unlimited.  

My remaining cat and I are dealing with our grief, and moving on as best we can.  I got my little one's ashes last week, and that was a sad day, but she is home with me.

Through all of this, I have kept my hoarding mother on the low contact plan, and her decompensation mentally continues.  I am wondering if some of the recent repetition I am seeing might be the drop in to dementia, but it is so hard to tell what is true, what is not, and what is her attempts to maintain control.  What my mother's neighbor tells me is more likely than not closer to my mother's actual reality, and she is concerned.  

My mother's MO has not changed, but she engages in endless and pointless speculation on other people, their intentions, their lives, and it is so far removed from most folks healthy interest in others.  She continues to wage her wars with anyone who is in her path, and most 'wonderful strangers' fall from their pedestal almost immediately.  The world is a small, terrifying place to her, and it is just sad.  In every contact with her she says so many things that are fodder for the 'from the mouth of a hoarder' post, and she engages in what a friend calls 'verbal masturbation'.  Once I got over the need for brain bleach, she has a point.  My hoarding mother needs no input, all conversations are monologues that she sometimes has to navigate pesky other viewpoints or comments.  It is basically a sick, paranoid stream of consciousness that also includes a good dose of racism, xenophobia, and internalized misogyny.  And the blatant hypocrisy of the dearth between her actions and words and the expectations of others.  Ever conversation is about her, and about her feelings, experiences, thoughts, etc.  The level of introspection is poor, and the level of narcissism is off the charts.  

Life is stressful, and we all have our challenges, which somehow we navigate and move past.  I find with my hoarding mother, life is a burden, a disappointment, and something to be simply endured... Yet held onto as tightly as she hoards her belongings.  A life like that, is to me, the closest thing to utter hell one can endure.  A life of opportunity lost and of retraction, rather than growth.  

I conciously choose happiness, and although there was a couple of times in the past couple of weeks I wondered aloud how much more I could take, I knew the answer to that.  All of it.  Every bit, and more if it is dished out.  Because I believe that the 'sine curve' of life's experiences... some really happy and elevated, some really awful and the line drops below the median level... make up the learning and the richness of it.  I appreciate health because health challenges have helped me understand that I am not immortal and that health is precious and should be protected.  I value friends, and although they sometimes hurt me, betray me, leave, or die... Their presence left me with something positive, and I hope mine left them in a slightly better place, even if I was a 'lesson' to them.  

Life is meant to be lived at full volume, and I am going to continue to give it all I have.  I have to actually credit my hoarding mother with being an example that I can learn from.  From the abuse, the pain, and all she has meted out over my 47 years, from that I had to figure out that 'I can, and I will' and that failure is not an option, simply because I either win, or I learn.  I think I have her to thank for that.  It is a double edged sword, as are most gifts.  I can also use this resolve and resilience to isolate myself and to alienate others.  I work on that every day...

Now off to do a 2 hour training run.  I am feeling full of energy after a slow start and a lazy day enjoying the company of my 14 year old cat.  I have been spending more time with friends, and have dinner plans with friends tonight.  I also plan to see the gentleman I have been seeing tomorrow, our schedules have not aligned in the past week and half, and I have missed hanging out with him.  Monday I start the planning for my trip to Italy in the Fall of 2017.  Onward and upward.

Life is good, not in spite of the wrinkles, but with them.

I wish I could say the same for my hoarding mother.

I am starting to dig out at work and entering a very busy work phase of grants and reports, but I will try to not drop down the rabbit hole again, and I should have more blogs focused on my journey with my aging, hoarding mother soon.

Thank you for reading.

Monday, July 11, 2016

Hearts can break... Not hoarding related

Last night my 12 year old kitty who had the grand mal seizure this Saturday was unsettled and we did not sleep, she just snuggled and wanted petted.  We finally feel asleep around 4am, and at 7am the neuro who she was referred to called and I needed to get her to their clinic in the next state by 9:30am.  I made it happen, and my little one was NOT happy.  At the neuro they discovered her BP was elevated above the frenzy she works herself into when travelling to the vet, confirmed her heart murmur, and discovered that her pupils were not dilated at an even level and thought she might have some sight issues.  

His suggestion was that she could have a brain infection (unlikely, her platelets were low, but white blood cell counts and temp was normal) or have thrown a clot from her heart, had a stroke, or had a tumor.  He presented a plan for $5,000 in testing that included sedation (risky for her at 12 with a heart issue) and included a spinal tap.  I needed a moment to figure out whether to use a credit card, apply for credit, or figure out another option, and I called my vet who recommended coming to her.  I paid my bill, and they gave me antibiotics, and I left.  

When I arrived, the doctor had reviewed the information from the emergency vet this weekend and the neuro, and we discussed options.  It is very unlikely it was an infection with no fever, and the likelihood it was a tumor or heart issue was high, and the fact that she was showing neurological symptoms was not good.  The likelihood of her having another horrible seizure was not an if, but a when.  And most likely would be soon.  And what if I was at work, out of town, or in the hospital having my surgery?  She discussed how the seizures would most likely be worse and could be excruciatingly painful, and paralysis could result, or other horrible things.  Her recommendation was euthanasia.  She is very reluctant to move in the direction normally, so I knew... I said goodbye to her and she went cuddled in my arms.

Now my other kitty and I start a life without her.  I miss her so much.  She was my love bug, and my special sweetheart.  We did not have as long as I would have liked, but in the 10 1/2 short years we had, we loved multiple lifetimes.  I have to hold on that, and when the time is right, I will honor her memory with adopting another special needs kitty.  I owe her that much.

Hearts can break.  I felt mine rip on Saturday during her seizure, and it shattered today at 12:30pm when she left my life.

She was the best.  And I will miss her every day.  I do not know what I did to deserve her and her love.

Sunday, July 10, 2016

Update- I cancelled surgery for tomorrow

For once, I am counting down the minutes until Monday arrives.  This weekend has been simply awful and emotionally draining.

I was scheduled for surgery this Monday, tomorrow, first thing in the morning to remove a mass on my ovary.  I had a second opinion scheduled at a near-ish nationally renowned teaching hospital (NNRTH) this Friday, the business day prior to surgery.  I almost cancelled it, but friends objected vociferously, and two friends drove me down.  I am so glad...  This became a total mindf*ck.  Saw the doctor at NNRTH.  She recommended cancelling at the substandard local hospital (SLH) for a number of reasons. 

First of all, the Emergency Care Unit lab report differs from what the ultrasound tech and the ECU doctor told me that night in the ECU. 

The second is the fatigue and the GI symptoms are most likely NOT related to the whatever it is on the ovary.  She has scheduled me for a GI consult.  My friend who is a doctor suspects Crohn's or IBS.  Yay?

Third, she was a bit surprised that there is a rush to surgery without having a Gyn/oncologist consult and on call to be present at the Operating Suite, and the ability to take lymph nodes and further margins that the SLH surgeon and the SLH gyn doc are not trained to do. 

Fourth- she says even the most minor of surgeries will be a long, hard recovery (because of my previous surgeries, the mesh, the adhesions, the endometriosis, etc., and she would not leave the ovary if she operates.  I am too close to 51 (the average age of menopause) and the risk is too high, potentially. 

The SLH doctor in an email communication where I emailed to communicate my understanding that he would take the ovary and he said he changed his mind and would not unless he just had to.  Wait... WHAT?  He also stated that despite my history in 2007, 2013 and 2014 of my bladder not functioning until 12 hours after the pain pump is discontinued, the foley will be pulled prior to the discontinuation of the pain pump, sorry I will have to be repeatedly straight catheterized...

The doctor at the NNRTH is requesting all records from my 2007 hysterectomy, the 2013 surgeries, and from this incident.  SLH was not interested in previous surgeries at a decent local hospital I can no longer use due to insurance.  

I called and cancelled my surgery with the doctor on Monday as I was leaving the NNRTH.  Very scary since I had to fight tooth and nail to get it scheduled in the first place.

Yeesh, what a mess.

I had a CA 125 and other blood and urine samples pulled at NNRTH before leaving town, and I have ultrasounds on the 22nd, and she is double booking to see me on the 22nd.  She has already circled in the Gyn/Oncologist on this process.  

I will keep my PCP local, use the SLH ECU if I have no other choice, but I think the bulk of my care will happen at NNRTH.  I am so done with SLH.

Then... Saturday my youngest kitty (12 years old) had the most horrible and violent grand mal seizure.  I thought she would die in my arms.  I was sobbing and felt so helpless.  She was choking, drooling, flying around, falling, peeing, slamming headfirst repeatedly into walls and furniture and screaming.  I thought I felt my heart break,  No exaggeration.  It felt like it was ripping out.  I came very close to having a breakdown.  I called my vet, no answer- they are closed.  Called another by mistake, and the connected me to the emergency vet.  Called a friend who came over and helped me get her in the carrier and drove us to the emergency vet.  They kept her 12 hours, and she did have a seizure, but they do not know why.  I came home for a while, and spent an hour napping, and an additional hour or two sobbing in bed, holding my other cat.  I was supposed to go to a party with friends, but I just could not.  I picked my sweet girl up at midnight.  She has a consult in the same adjoining state as the NNRTH this week I hope.  She is home, and doing well.  We need to get to the bottom of this.

I have not called my hoarding mother.  I just cannot.  I cannot recall feeling like this before, not even when I was divorcing in 2008 and my whole life blew apart.  
I will be fine.  Honestly, I have no choice.  Failure, or softening in any way, is not an option.  Full speed ahead.

Thank you for all your kind words and support.  It means more than I can express.  I also have the honor of having such kind people in my life.  I am simply not worthy, but I am so grateful.  The guy I am seeing has been travelling a great deal, but he has been so supportive and empathetic.  I hardly know how to react to him...

Okay.  To bed.  Tomorrow, I return to work.  I feel awful, one day I gained 8 pounds in one day, lost 9 the next.  The bloating, the GI stuff and the fatigue, and the pain from this ovary thing is not helping me stay centered, and I am not sleeping.  I have not ever really felt fragile, but I feel like I am made of cracked glass that is only holding together from pressure.  I must suck this up and get over it, now.  

Thank you for reading.  Next time will be a better one.  It has to be.  And the kicker?  I know the abusive, narcissistic, hoarding quagmire I was raised in is contributing to the struggle I have to know what I need, to ask for it, to accept it, and to treat myself gently.  And I resent it.  I resent it mightily.  And I need to get over that too. Now.  NOW.

Goodnight.

Thursday, June 23, 2016

Most recent update

A quick note of update.  I am scheduled for surgery July 11, 2016 and I have the appointment for the large teaching hospital nearby for July 8, 2016.  

This week I have been really, really weak, tired and nauseated.  A lot of pressure in my pelvis and pain in my chest.  Surgery time cannot get here soon enough.

My hoarding mother has been absolutely HORRIBLE.  I am keeping her on extremely low, low contact.  Nothing new, just her usual BS but I know she will attempt to make this miserable, and on the rare occasions she does ask how I am, it is to leap off and discuss herself, or to make dire predictions...

At this point all I know is I have a mass on my ovary about the size of a softball.  The large cyst has burst (probably what triggered the incident that mimicked gall bladder that drove me to seek help in the first place).  I have another incisional hernial at the top of the previous repair, and they will not know what surgery entails (less invasive options are unlikely due to previous surgeries and scar tissue, endometriosis and other issues) and what is there, and if it is benign.  I assume it is, since the last one was.  The hardest thing is I am getting sicker and weaker as the days pass, and today I again had the pleasure of getting really ill at work.

Fabulous.  Now I am spending the next couple of weeks preparing to be in the hospital for 4-6 days and for assistance post.  Or I will, when I feel well enough to reach out, and to ask for what I need.  And I have no idea what that is.  But I will figure it out.  I will.  My friends will rise to the occasion if I allow them to, and I trust them to help me.

Thanks for your support.  Sorry for the continued carping.  Oh- one interesting development... I met someone who seems to be someone that I could see myself spending more time with.  What timing, eh? But there is either a positive side to everything that happens, or a lesson.  Onward and upward.  No one said life would be easy, but I think it all is worth it, and at the end of the day, that is what keeps me looking ahead.

Thanks for reading.

Thursday, June 16, 2016

Lisabeth's Update- Medical Situation

Just a quick update.  Thank you for all the lovely comments, emails, and other communication expressing care, love and concern.  I have felt really isolated and alone through this, and I really appreciate it.  It is not that my friends do not want to help, will not help, but with the delays that are happening, I have no ability to plan for my impending surgery (or surgeries) and there is no quick end in sight. 

As some may know, I was diagnosed in the Emergency Care Unit on May 26 with a ovarian tumor and a rip in my 2013 mid line incision from the removal of a nearly 11b fallopian tumor that nearly killed me.  The intent of the ECU doctor was for this process to happen quickly, and it has been a comedy of delays, mistakes, insurance delays and mistakes... But I finally got to see the first surgeon, who wanted another CAT scan with a different type of contrast that was initially blocked by my insurance, then approved, then 2 days post test, determined to be outside of network so I have to pay.  A lot.  Next, the doctor wanted me to see a second surgeon who he wants to assist him.  It took me a bit, but I got in and saw him this Tuesday.  We had a plan, I thought, and I was told in a day or so I would get a call to schedule the surgery.  Thursday at 3:30pm I still had not heard from them, and they are closed on Friday, so I called.  

Yeah.  FML.  Surgeon number one is on vacation and will not be back until Tuesday.  Surgeon number two only has 2 surgery dates in the next few weeks that coordinate, and that is July 13 (maybe) or July 20.  Three or four weeks from today.  It has already been delayed by 3 flipping weeks, so that would take it to 6 or 7 weeks.  Last time, my tumor grew exponentially in 5 1/2 weeks, enough to nearly kill me.  Every day we wait, this thing is growing, and my less invasive options for surgery wane.  

I am calling a nearby teaching hospital and I am going to see if they can get me in, but I am not hopeful.  This hospital is about an hour away from my home, so this assures I will go through this alone as my friends will not be able to help me.  The last hospitalization in 2014 I went through completely alone, a dear friend took me and stayed with me the 8+ hours I was in recovery, and another dear friend came and picked me up and stayed with me when I left the hospital early, but ye gods it was miserable.  No one to advocate, no one to check in, I got really sick multiple times and they pulled my Foley too early and I had to be straight catheterized 3-4 times, had an adverse allergic reaction to an infused medicine (that was listed on my chart as an allergy and they gave it to me anyway) and it was just miserable.  I was alone a great deal of the time in 2013 as well, but I had a private room and was really, really ill.  Folks popped in, but I was able to rest.  Eleven months later I was in a semi private, and because I could not figure out or articulate what I needed, and due to hospital over enrollment I was not in a private room as they had stated.  I went through a really invasive surgery and a horrible hospital experience totally alone.  No one to blame but me.

And this time?  Yeah.  I suspect 2014 history is going to repeat itself, either out of necessity because I am out of the area, or because I am just so freaking overwhelmed, frustrated, and have no ability to plan since I do not know what is happening, and the time my surgery might happen will ensure that key folks may not be available... That is the current insurance or surgeons do not allow this to progress to a emergency point like in 2013 where I go into the ECU and end up in surgery a short time later with little delay.  The other thing that is scary is due to mergers and insurance crap I lost every single doctor I had, and these new doctors are not interested in my previous medical history and the past surgeries, and from the conversation today a flip comment was made that the incisional rupture may or may not be fixed if the surgeon coordination cannot be worked out.

SAY WHAT?  He stuck his finger in my abdominal wall up to his first knuckle.  

Sorry for such an unhappy post.  It will take me a day or two, but I will 'suck it up, cupcake' and move on.  I am planning on using the grievance procedure with both the hospital system and my insurance, and I will call the other medical provider ASAP.  I am working on several plans at once, but why does it have to be this hard?  The ECU doctor and the radiologist that evening were concerned about the growth rupturing, and the ECU doctor was concerned enough he called surgeon number one at home at 4am to try to get me in that day by 10am.  I was seen a week and a day later.  My second CAT scan was delayed from Friday to Monday, and I had to wait another week for the second specialist, and now another week has passed.  

I have good days and bad days, but I am exhausted and have a lot of pain.  I saw my primary care physician on Monday, and my blood work is a bit wonky due to this.  He assumed the surgery would happen by today, or early next week.

Again... I know I am doing this to myself, but I am obviously destined to walk alone through this the way this is playing out.  And sometimes, I am so tired of it.

But... I have little other choice.  I choose to progress onward and upward, and hopefully there are no other unpleasant surprises.  At this point we do not know what this growth/tumor is, and what its nature is.  The delay on this is not helpful if this goes badly, which I honestly do not expect.  

I just need this over.  I need to start rebuilding, healing and training for my marathon and the next month running goals.  

Thanks for reading.  Sorry so down.

'Wow... seriously?' is most likely NOT an appropriate title for this, but...

First of all, it is ironic that I picked a Cafe' to get some blogging done, and I just realized that the table of young women near me (7 of them) are some sort of Meetup.com group that appears to be a group targeting folks with hoarding behaviors.  They are discussing their meddling families attempting clean ups.  It is fascinating, but triggering.  I am moving to another table...

Anyway, my hoarding mother's latest.  A neighbor's tree fell on her property, and according to her, he is an absentee slumlord who is inaccessible.  She got a tree trimming service to come trim the tree back so she can get out of her detached garage, then they returned the next day to haul away the tree.  This all heralded the normal amount of guano-loco that you can imagine.  She has been calling local attorney's offices, as she plans to sue them too.  Yay??

That same day, her garage door failed.  She had to call someone out to repair it.  The opener is over 25 years old, and may be older.  Now, she has decided that the reason the part failed is someone forced it up to place the items they stole from her small 'storage barn' (shed) from the yard.  She claims they put something in the lock after they forced it open, so she can no longer open it.  My question was... how does she know what was stolen if she cannot open the door?  That was ignored.  So now, whomever did this forced her garage door open, placed those stolen-from-her-objects in the hoarded garage behind her car, with other things that are not hers, along with 'writing'.  She did not read it because she is not getting close to it.  I asked her if she called the police, and go the usual bluster and excuses.  I ended the call.

Just.  Seriously?

Sunday, June 5, 2016

I simply cannot win...

I should have known, and it seems that I will keep having the same lesson until I learn...

Long story short, I have been having some health issues, that I have not yet had diagnosed.  They suspected an autoimmune issue, but I have been unconvinced.  In training for my upcoming marathon, I noticed my heart rate has been off, and I struggle to maintain endurance and speed goals that I should be surpassing, but I figured it was whatever was happening, and I now have a follow up appointment in mid June.  I started having dizziness a few weeks ago, and dismissed it as the residual damage from a huge fallopian tube tumor in 2013 that nearly took my life.  I also have had some other similarities to the days leading up to the discovery of this tumor, but I shook it off.

Why?  Because I am obviously stupid.  

So on Sunday May 22 I woke up sick, and it progressed quickly to everything exiting my body in one of two unpleasant routes, sometimes at the same time.  I had 36 hours of pain and vile GI stuff, and by Monday afternoon I was back at work.  Tuesday night I felt pretty good, and Wednesday was a repeat of Sunday, but with a lot of chest, back and lower right abdominal pain.  I finally called the tele nurse, who instructed me to go to the emergency care unit ASAP, she was concerned I might be having a gall bladder attack.  My wonderful friend who brought over groceries on Sunday so I would have the BRAT diet took control and drove me to the hospital.  Long story shorter, I have a small amount of sludge in my gall bladder, but they caught a glimpse of something in the CAT scan.  The ECU doctor thinks it is a softball sized ovarian tumor on my remaining ovary.  The doctor I was to follow up with is trying to determine if it is that, or a bowel tumor or a couple other equally unpleasant options.  Most likely, I will be going under the knife soon.  Very soon.  

My insurance is being a pain, and has slowed things down considerably, along with a couple of mistakes by the doctor I was referred to.  I am hanging in here, but I have good days that are not the best, (weak and a bit of pain) and bad days with nausea and vomiting that come on suddenly, along with passing out.  It is fantastic fun.  

My perspective is, whatever this is, I will deal with it and make the best of it.  Am I pissed that I am most likely now going to miss several goals that I set such as:

  1. Running 1,500 miles in under 12 months
  2. Running a full marathon this year (26.2 miles)
  3. Running an obstacle race in July
  4. Running a Spartan in the fall
I will meet these goals, it just may be next Spring and Summer.  I also know that there is a possibility of malignancy if this is a tumor, and that may require more treatment and surgery.  I will cross that bridge when I come to it.  

I decided after a few days that I would tell my hoarding mother so hopefully she would dial back the crazy for a few days... HAH.  

She immediately responded with "Oh no.  Your dad..." and I cut her off.  I am very aware that I am now 47 and my father died in his late 40's, thank you not so very much...

Her next statement was "Are you in pain?" and I replied that yes, I had pain, and I was given major painkillers but I am not taking them.  She then asked if my 'belly' hurt and if it was 'puffy' and then stated she wondered if that was what was wrong with her... blah blah blah.

I ended the call.  A co-worker called that conversation to the tee... Yikes.  So now, I am traversing the medical diagnosis process and trying to keep work balls in the air, and I have not told many folks much since I know so little.  But I am really ready for this to be over, and to move on.  

I am still running 6-7 days a week, albeit a bit less mileage and speed, and I am working shorter days but doing my level best to keep things moving forward.  I am also spending a lot of time with friends, even if they do not know, as I just do not want to stew in my own juices, I choose to spend time with fun, positive and uplifting people.  

Keep your fingers crossed for me.  No one said life would be fair or easy, but it is worth it.  In my opinion, everything that is worthwhile is sometimes a struggle.  I continue to live life at full volume.  I am now planning a trip to southern Italy with friends in 2017, and I will see friends in Florida in late Summer.  

My life, my terms, no compromises.  I refuse to live life on the 'safe side of the street' or 'look at it as opportunity lost' like my hoarding mother.  And I will learn this lesson.  Before it is too late, I will learn and integrate.

Thank you for reading.  I will post an update when I know more.