Tuesday, March 11, 2014

I can't make this crap up I swear!

I apologize for the length of time in between posts but when I fill you in, you will understand. Last we left off I was getting a second opinion in Boston for Diesel. (Click here for the first part of the story) My Rheumatologist had a doctor she recommended. We did the 2 hour drive on a Monday morning anxious for what he would tell us.

Let me back up a bit. Sunday night I was looking over all my medical records. What I found was disturbing. For months I had been complaining to the surgeon about lower right quadrant pain. That's actually what sent me to the hospital. I thought it was my appendix. Well after my surgery and the weeks following my doctor wasn't giving me solutions. He just threw dilaudid at me. It turns out Diesel was actually located under my breast bone. I had never felt pain there. This pain I was having was from 2 cysts on my right ovary. One was 4.8cm and the other was 1.8cm. It also turns out I had cysts in my kidney too. I was livid. I was so mad I could cry. Why would he not tell me these things? After I vent to my husband I'm ok. Tomorrow I will be getting the best care up in Boston so he can go screw himself right?

We go to Boston. We met the new doctor and he spent an hour with us. He listened to everything. The story, our concerns, our plan. He was awesome. He said "We'll figure this out." I go back to Boston that following Friday and do a bunch of tests he had ordered. Including an ovarian ultrasound for my lady parts doctor, which he encouraged me to go see ASAP.

A few weeks go by and the new doctor has had a chance to look over my old scans, bloodwork, and pathology. He compares them to the new scans, bloodwork, and pathology. He calls us with his findings. He speaks to Joe. (I was getting some beauty rest). 

Ok here we go...deep breath...There was no mass, tumor, or Diesel. He's about 95% sure. He's also positive that I had pancreatitis and it went away. That and the ovaries were causing the pain. He also said the pathology from the biopsy was just fatty tissue which everyone has. You can just imagine my heart and mind are racing. I'm floored. I'm beyond mad. You know the mad you get and you just have to laugh because if you act on your true feelings you would end up in jail? Yeah that mad. 

It took me a good week to process this information. All this time not on my RA meds and I was close to flaring and staying that way. A high risk major surgery was done that I didn't need. Every time I looked at the huge ugly scar running down my belly I wanted to cry. My sister has always told me I should be proud of my scars. I'm still finding the strength to do so. I know I will at some point. 

My next step was to get the other medical issues taken care of. I went to my nephrologist down at Yale and he assured me my kidneys were great and he'd keep an eye on them. Phew {wipes brow}...NEXT!

On to my lady parts doctor. Actually this was a new doctor to me and someone my sister recommended. So last Tues I go to my appointment. We talk in her office, she looks at my ultrasounds they did in Boston. She asks me for family history of cancer and I tell her to look at my sisters chart because I have no idea as far as the women are concerned. She then tells me I'm high risk for surgery because of my RA, narrow airways, and sleep apnea, so she probably wouldn't do it. She would just drain they cyst and it would probably come back. I was pretty disappointed because it was causing a lot of pain. I mean wake you out of a dead sleep some nights pain. 

Next we go into the ultrasound room and she does an ultrasound of my ovaries. She says "ok left one looks clear and healthy. So does the right one. Ohhhh how does April sound for your surgery?" Yeah let me translate. I do have a 4.8cm cyst...IN MY FALLOPIAN TUBE!!! And next to it is not a cyst but backed up fluid taking up the space of 1.8cm. Holy crap!! Considering the fallopian measures in circumferance .06cm-1.2cm. Yup. You read that right. So now I am in danger of the tube bursting. Luckily we have some time (just weeks) because cysts grow slower than an ectopic pregnancy. And why does the cyst hurt worse now that I've been validated?

Fast forward to last Friday. I'm down in Jersey and call to schedule my surgery. The doctor calls me back. I have found out that ovarian, uterine, and cervical cancer run in my family. I also am a carrier for the HPV virus. So more than likely she said I will get cancer. Because she is going in there anyway to take of the cysts she decided a full hysterectomy is needed. Wow. My uterus is pretty much the only body part that has cooperated all my life. I've been told I have a perfect uterus. No abnormal pap smears, no endometriosis, no cramping during periods, very short and on time cycle too. I hang up the phone and I just sit there.

I'm in my thirties. Granted, my high thirties but still. I'm in shock. It takes me a while to react. Then I cry. "I'm not done", I say. "I'm not done". I had held on to a small hope that oops I'll get pregnant again. Julia was an oops. I desperately all these years I wanted another oops. 

I have struggled the last few years with the decision to not have more kids. I have watched so many with diseases just keep having kids and they are spread thin. Barely making it through the day. I chose to be a quality mother and give all my energy to one child because at times I know I will only have 40%.  I'm not judging those that do. I'm just saying it's not a fit for my family. 

A hysterectomy is so final. You can reverse a vasectomy. You can harvest eggs once your tubes are tied. It's been a week,and I can't wrap my head around it. I've been in a daze just going through the motions. Everyone keeps telling me "oh it's the best thing I ever did!". But this is ME. My head agrees this is the best option rather than risking cancer and them having to go back in. My heart is what's broken. I feel like I'm mourning a child that isn't mine, that I was never going to have. Is that normal? 

May 8. That's when it's going to happen. I just wanna fast forward to when I will be ok with all of this. 

Well I think I've written enough for now. I'll be back sooner than later. Muah. 


  1. I think everything you're feeling is normal, natural, and heartbreaking. Having babies didn't happen for me, probably because of my anatomy, but I did have a miscarriage and a tubal pregnancy and even though it was 15 years ago I still feel your pain as though it was happening today. The urge to reproduce is built in and undeniable and I'm so happy you have your daughter. Good luck and may the goddess bless you.

  2. How are you feeling now? Are you still having your surgery in a few days? Good luck, you're in my thoughts.
    PS forgive me but I haven't read your entire blog. I don't even know if I should mention this, it would probably not be enough. Lately I have been taking an iodine/iodide solution that has books written about it. Supposedly it shrinks cysts. It has "shed" my extra thick endometrial lining. How do I know? I was getting bloated, had strange clots during my period for MONTHS and was generally miserable "down there". I started the iodine/iodide. The last few periods I didn't have any premenstrual anything, no bloat, and 90% clot reduction, and my periods aren't so heavy anymore. So it did SOMETHING! Even after your surgery, read up on it. I'd name the brand but I don't want to look like I'm selling anything. There's a book by some guy named Brownstein. I haven't read it but I've read alot about his protocol. The brand name, though, if you figure it out, read the reviews on Amazon (hundreds of them can't be made up!). People have had very surprising results - your whole body uses iodine/iodide and most of don't get enough of it.
    That's all. I don't want to feel like I'm giving you a solution, I just wanted to share my MINOR (compared to you) female problems and something that helped. PS I have had a couple of cysts removed in the past, too and also had to have a D&C because of the thick lining, but that was years ago.

    God bless, I hope that you feel better very soon after your surgery!!