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.