Aug 21, 2014
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.