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Some GOOD NEWS!!  Finally!!!

Aug 21, 2014 - 15 comments

OMG my friends it has been a roller coaster of a week!  On Monday I got the call that my surgery would not happen until December due to the fact that I was booked in for Day surgery originally in March.  At that time my surgeon believed she was just going in for a quick clean up.  However, since March my disease has escalated and not responded to any of the hormone treatments.  As well I have developed a mass that may be adenomyosis.  Also, I was not taking any narcotics in March.  The day surgery does not allow patients who are taking over 20 mg of any narcotic as it does not have a proper anasthesiologist or the proper equipment for a more complex surgery.  I lost my mind when I heard this.  I wrote a long and involved personal email to my surgeon going through step by step everything that I've been through since March.  The ER visits, the lumps, the bleeding from my bowel, the increasing pain, the fact that I went from refusing all pain meds to only having to take pain meds at night to being in constant debilitating make me vomit pain unless I dose every 3 hours around the clock.  She responded that she would do everything that she could.  Then last night when I got home from my final class of the summer semester (it was late, 10 pm) I had an email from her saying that she would be calling me this morning and we would be having a conference call with all the members of the practice- OR booking, her nurse, assistant, and herself.  This morning she told me she'd bumped another patient that was not as emergent as me and I am to have surgery at the main hospital on OCTOBER 8th!!!!

She apologized profusely for everything that has happened, and said that she has NEVER had a patient whose disease has escalated so quickly, especially after hormone treatment.  She also told me that I need to be prepared- she may not be able to fix everything.  If it is adenomyosis it will not be operable and will still cause me pain.  She is setting me up with constant support in the meantime with a counselor and a nurse who will be available to me whenever I need to talk.  She wants to see me tomorrow morning in her office to examine the lumps and bumps I have to determine whether they need to be biopsied.
She told me she is doing all of this because I am a proactive patient who has worked very hard to heal in the past and she understands how much I have at stake.  That I have always worked hard to learn to manage this disease and not just medicate it.

I have to admit, I do feel a bit guilty about the other patient.  Not knowing her history or how long she's been waiting.  I don't think my doc would have bumped her unless she was not in very bad shape,  It may be that she's just on large doses of narcotics and so the only way they can see her is at VGH.

I am still scared.  I know that it may be difficult to take whatever is discovered in this surgery but right now I am going to stay in the NOW.  At least I know I will have some real answers soon.  And we will come up with a plan from there.

I am proud of myself for standing up and fighting and not backing down.  It wasn't easy for me to do that but I have so much at stake here.  I will deal with what comes as it comes and I know that I will have A and my parents and all of you behind me to help me cope.

The sad part is she told me her mother is now in ICU and may not make it.  This is why she wants to see me tomorrow as she may have to leave the country again next week to be with her mother.  Poor woman.  Losing both her parents within months of each other.  I really feel for her but am so grateful that she is aware of the impact this has on my life and she is doing what needs to be done to help me.

Thank you so much for all of your love and support and prayers.  This has been the hardest summer of my life and I am relieved that soon I will have answers, and hopefully some resolution.

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Avatar universal
by MyMelBgirl, Aug 21, 2014
That's great news Lu. I wish it were sooner but very glad your surgery isn't being put off till December. Take good care of yourself!
Lots of love

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by meegWpaw, Aug 21, 2014

Thank God Thank God THANK GOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

yay!  yay you!!!!

how you like me (you) now, honey?

oh Lu I am so glad to hear this you don't know.  October 8.  yes!

im sorry but it is not your job AT ALL to worry about the other patient.  you have been doing Their (staff, med ppls) job for so long on this baby let that go

its all you

and it should be babes

yes don't worry about what you cant control.

very proud of you!

very happy for you!

she should have done this for you no matter what you did honey, just sayin, but ok ill take it no matter what spin she puts on it

we all KNOW you are wonderful baby.  we known that for a long time

just give her my number she can call me up if she need to hear that

I love you baby


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by Shannon79, Aug 21, 2014
That is fantastic news Lu!

I'm so glad to hear it got bumped up to Oct. That's only 48 days away!!!! Much better then December.

Must be such a relief to know you've finally been heard!

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by PurrfectlyKrazy, Aug 21, 2014
That is so awesome Lu!  So glad you stood up for yourself...and that you are going to get some answers sooner rather than later.  I always tell people to push all the need to when it comes to doctors.  They are not Gods and they do make mistakes.  I'm kind of awol too....just posted a journal entry.  Hopefully we'll both be back soon and in better form..  Take care  xox

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by lulu747, Aug 21, 2014
I totally think that she realizes she made a mistake and is covering all bases.  I just got off the phone with the clinic counsellor to debrief how I was feeling.  Where was all this support 3 months ago???
It doesn't matter whether she finally realized what bad shape I was in, or whether she made a mistake and is now covering all bases- what matters is I am FINALLY getting the help and support I need.

I am so tired.
On top of all of this I have a nasty flu bug.  Fever on and off since Sat and headache, sore throat, tummy pain, and sheer exhaustion.
But the OTHER good news is I am officially off the clock until September 9th!!!  Well, not entirely because I own my own business.  But I am finished teaching and directing for now and all I have to do is registration 3 hours a day for 3 days next week and then I am OFF!!!

It is mine and Andrew's one year anniversary.  Yes, it's only been a year...It feels like we've been together forever.  And so we are going to two little gulf islands- one where he is playing a music festival (super mellow with all of our friends) and then we're going to a cabin on the ocean on another island to do NOTHING.  Sleep, eat, read, chill.
I can't wait.  I haven't had a holiday since January and I was sick the entire time with a super virus so it was pretty miserable.

I have to get up at 6 am tomorrow (yuck, that's usually when I finally get to sleep) but I am going to rest as much as possible this weekend.
I have to go to closing night of the play on Sunday BUT THAT IS IT!
I also took my house off the market because there is no way we can move until I am healed, and the constant pressure of having to keep it spotless is killing me right now.

I am going to practice KISS from now on.
Keep it simple silly. (:

Love you all!!!!!!!!

Ps.  Meegs- thanks for always having my back and pushing me and listening to my rants and giving me SO much love.  You are the bestest xoxoxoxox

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by atthebeach, Aug 21, 2014
AMEN and AMEN!!!!

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by jugglin, Aug 21, 2014
Great news Lu!  Be kind to yourself between now and then so that you will be as healthy and strong as you can possibly be for your surgery and recovery!
Prayers your way!

Avatar universal
by weaver71, Aug 21, 2014
I thought this may be the next progression, I'm happy for you.

1742220 tn?1331356727
by meegWpaw, Aug 21, 2014
so ... happy anniversary?  I got confused and am not sure when your going to islands ... but I know it will be great!

take it ez with getting up early, and going Sunday night ... and get some rest when you can and get over the flu!!! jeez!

I did not even know you were selling your house.  gosh, woman!

glad to hear your spirits are up and you are getting some results!!! finally!!!!!

always here lovin you!


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by Sonrissa, Aug 21, 2014
This is great news, Lu! Finally, a light at the end of the tunnel.  Keeping my fingers crossed that EVERYTHING works out for you!  All the best!

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by lulu747, Aug 21, 2014
Hahaha Meegs-

Ok.  I live on Vancouver Island which is the biggest of the gulf islands.  There are a dozen or so of them.  So for vacation we are going to two of the LEAST inhabited of the islands.  The only way for me to really rest is to get out of town because I am constantly stalked by parents and students...Don't get me wrong- I LOVE MY JOB but it is exhausting.

My mom is kinda freaking out.  Both her and A are very worried about my swelling and lumps.  For the past two days the swelling is constant and I look like I am carrying around a baby bump (I wish) especially because I'm always holding my tummy.  The lumps are so hard they feel like a rope necklace made of marbles.  I am nervous that she wants to biopsy them- apparently they are not normal endo symptoms.  Please God say that I don't have something ELSE on top of all this crap.
Anyways I am trying to down play because A is playing a big music festival tomorrow and I want him to go and have fun and not worry about me.  He is already coming back a whole day early- but it is a big break in his music career and I'm trying to keep things as normal as possible until they are not normal...
48 days.  Well, now almost 47.  I'm so tired and I feel like I could sleep for a hundred years.  Getting up at 6 am is hard for me seeing as I never go to bed before 1 and lately my sleep time has been 6-10.  Oh well.  Gonna take an extra dose of tryptophan and some melatonin and go to bed early.

It IS a light at the end of a very dark tunnel Rissa.  TG.  I can't wait for this to be over...Or at least for the next step to be taken.  I am much better with the known than the unknown.

My play got RAVE reviews in the paper today.  Apparently we are the 'must see' of the week.  My direction was highly touted.  THAT feels good (:  I did this work while I was too sick to stand.  I can't wait to see what I can do when I am healthy.


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by meegWpaw, Aug 21, 2014
so if I must see it when you flyin me up there to do so?

haha Lu

take care of you!

<3  Meegs

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by clean_in_ks, Aug 21, 2014
Couldn't be happier for your good news Lu!  Oct 8th is not too far from that first date of Oct 3rd, eh?  Music to your ears, I'm sure.  
Since you have a solid/confirmed date now... my hope is that you will continue to surrender even more and give your body a complete rest until your surgery....we don't get "do overs" when it comes to the critical nature of our health and how we take care of ourselves while we wait can make a HUGE difference in the outcome.  
Sending you love....and praying you'll be gentle with Lu~

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by lulu747, Aug 22, 2014
Connie there you are!  You wouldn't believe how excited I was to log on and see your name pop up!!!  I so hope you and hubby are doing well and things are looking brighter, the load lighter.

Yes.  I promise to be gentle.  Really, I have no other choice.  My body has never been in such a state of pain and suffering.  This beats every Crohn's flare and RA attack, and even my previous battle with endo.  It has tested every ounce of my soul and I am learning every day about SURRENDER.  I cannot push my body any more.  I can't.  And I won't.  And I have YOU to thank for painting it so clearly for me in black and white.
I love you.

If I had any extra cash I swear I would fly you up here.  THAT would be awesome.  I'll send you the link to the trailer on Youtube when it gets uploaded.  BUT it's totally just a teaser (:

Ok that's all from me tonight.  I am getting some sleep because I really need it.

love love love

Avatar universal
by Amandag78, Aug 22, 2014
My beautidul sweet Lu, im with Meegy, Thank god... Thank god... Thank god !!!!!  So happy for you my wonderful gal !!! I love you lots gorgeous xoxoxo

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