Friday I have to spend a good part of the day at Hopkins, getting a few tests to make sure I can even GET the surgery. I am being put out for at least one of them (but hopefully both because the other one sounds painful so, yeah, not looking forward to that) All I can do right now is hope and say a little prayer that the tests go well and I get the go ahead for surgery.
Last time I had a procedure at Hopkins they tried 6 times to get an IV line in and I wound up with a PICC anyways ( I still have scars from all three of the PICC lines I was lucky enough to get since October). They even tried to get me to agree to a central line (no way) so I couldn't be so "difficult" when I had to get IV's. Hopefully it'll only be one stick this time but they tell me when I am nervous it's harder to get that line in and…. how is it easy to be not nervous? At least my husband will be there with me this time. I was alone last time, and scared, which made me probably even more nervous. He'll be with me for all of my Hopkins visits this time which is going to make everything so much better. My procedures on Friday, my pre op visit on the 16th and my surgery on the 21st.
I still wish I knew how long I'll even be in the hospital. Apparently that's not information easily given since my recovery will depend on how easy the reversal is. If she can do everything from the existing stoma site, without additional cutting, I could probably be out within a day or so and my recovery will be what, 1-2 weeks? However, if my body decides to be difficult and she has to cut me open again… it'll be at least a week in and then another 4-6 week recovery which includes not being able to lift my kids again.
I am looking forward to being put back together. And while I hope it's the simple surgery… I'll take what I can get. This was not a surgery I wanted to begin with. I wanted to be put back together as soon as she removed that section of my colon - I never wanted this. And, to be honest, it weighs heavily on my mind the last thing the surgeon said at my last visit:
The surgery was very unconventional and… we'll see if it helped. Once your colon is back in working order, the same thing could very well happen again.
Which will mean I'll be back in the hospital. And I KNOW I should remain positive and have faith that this surgery will help me get through at least another 25 years of dealing with this disease. But… I saw her face when she talked to me about what will happen post surgery. The woman who works at HOPKINS, is one of the best in her field, I saw that she CLEARLY does not think this was the answer. Call me crazy but that's how she came across to me. The answer can not be, cut out my entire colon (which was presented as an option last time and I said no). It just can't because I don't feel like I have the strength or the energy to deal with that - it's too much and I've been through enough.
I didn't plan on this being a whiney blog about this but I guess I needed to get it off my chest. I know I am worrying about it all way too much. I just want the 21st to get here already so I can get it all over with and try to move on. I have overall been feeling better lately. I still have pain almost daily but it's not so bad I need to take anything stronger than a tylenol (most days anyway). I call that my functioning level of pain and that's just my normal so I can deal with that. At least I haven't needed the strong stuff daily in a long time now. I did hate how I felt being doped up all day long. Do you have any idea how hard it is to take care of two little ones when you can barely stay awake? I do feel lucky that when it was time to stop taking those pills, I just stopped. I was on dilaudid and various other narcotic pain meds from October through Febrary (and a little bit into March). I didn't get addicted which I think is pretty amazing considering how long I was on them on a daily basis.
Now I just need to work on my worrywart nature and we'll be good :)