I haven’t been doing much updating it is more a waiting game at this point. I promised to share my journey to help people understand the long and tedious process. I also hope to inform those coming after me as to the myriad of hurdles and hoops you have to go through. In the end, we must possess copious amounts of patience.

As of today, 5 May 2019, I have 36 days to wait. It should have been 29, but I was told they had to push it off a week as the doctor wasn’t going to be available. Praying there will be no more delays. I am waiting to hear from them as to stopping my hormone regimen. We have to stop for around 30 days prior, though I have heard conflicting info. Some say you can continue your estradiol, but have to stop the spironolactane while others are saying you have to stop it all. I will just have to wait for the Doctor’s office to advise me.

A thing to consider is the time you will be out of work. I spoke to our HR/People Center and was advised that rather than use up all of my vacation for recovery, I should utilize short term disability and file under Family Medical Leave Act. You should do that about six weeks in advance as forms have to be filled out and the doctor’s office has to fill out one so ensure that you have time to get all of this done. I worked with the nurse to get the form done and she told me that since my job is mostly on the computer she will put me in for June 11th (surgery date) to July 8th. Recovery, I am told is usually around six weeks. I plan on taking the day before my surgery as vacation as I will have to take the colon cleanse stuff to get myself cleaned out. I am so not looking forward to that. I had to do that for my last colonoscopy and frankly it sucks. Not so much the having to go to the bathroom so much, but the flavor makes me end up going from both ends.

Another thing to consider is stockpiling lots of cash. Our deductible and copays are high so trying to ensure I have enough money in reserve so I am not deep in debt afterwards.

I will give more update when surgery gets closer and I get my final instructions. I was told that I will go into surgery on the Tuesday. I will stay until Friday and be sent home for the weekend with the catheter and packing still in place. I will return either Monday or Tuesday to have the nurse remove the catheter and packing and give me a set of dilators with instructions on use. The dilators are needed to keep the passage open and as you heal, the frequency of dilations required will go down.

I am already stockpiling ice packs, and have to get a donut like you use for hemorrhoids. Probably need to get lots of pads too. It can get messy.

It is going to be a long recovery, so I have also stocked up on books to read. The nice part is that hopefully, it will be warm and sunny. This dreary, cold rain is really depressing.

I am hoping that my surgery prep electrolysis appointment is my last. I like Linda, but not the pain. I will check back in as we get closer.

My heart to your heart, one heart, one spirit!
Emma