Posts have been sparse. It was much easier to find time to write during recovery. Now that I’m back to work and life and STILL playing catch up, it’s been much harder to keep you all posted.
I’ve had so many friends and friends of friends that have mentioned they’ve been reading along and following my journey and I’m extremely humbled by that. I’m also embarrassed that I left you all hanging for so long!
Everyone asks how I’m doing, so I’ll start there. I’m good! I’m much better but not all better. Feel free to hug me and give a good squeeze – I’m past the point where that hurts, though I find it so touching that occasionally someone is afraid to hug me. I’m so glad people care/take this seriously/believe that what I’m going through is real.
I’m using a lot of slashes tonight instead of mulling over word choice. It’s late and I’m very tired. We spent the evening celebrating my little sister’s birthday! But tomorrow’s still a work day. It’s also my anniversary – lots of exciting things going on to keep me tired. ;)
Anyway, like I said, I’m better but not all better. I’m surprised at how much I’m still sore with what feels like endo even though I know it’s all out. I’m guessing it’s hard to heal from laser burns, so I’ll just keep giving myself more time. Right now, the biggest thing going on with me is stomach problems. All the medication from the surgery and the strange eating habits during recovery have my system very out of whack. I can eat fine, but I’m extra picky, and no matter what I eat I have a really hard time digesting it right. I feel nauseous a lot and get stomach cramps, and that’s what makes me not want to eat. I need to get on probiotics, but again, I’m so busy I haven’t had time for that either. All the catch up stress of course doesn’t help my stress-triggered IBS.
Still, I’ll take this over how bad the endo was!
On to the doctor’s report: the surgery was a great success. My doctor was shocked at how much the endo had grown and spread. He removed more this time than he had with any other surgery, including the FIRST one which logically should have had the most. At least that’s what I think.
Using the robot was a great help to him. Basically the only difference is increased mobility for him. Using the same small incision, the robot arms can bend and go under, around, and even gently and dexterously pick up and move organs so that Doctor O was able to make 100% certain that he removed all the endo wherever it was hiding. Basically, it was like the difference between using this to grab something:
Or just using your arms and fingers. You have a lot more control that way.
Now for the part that people who are not chronically ill will have the most trouble understanding: the next steps. This surgery, while a great success, was still not a cure. The endo has been removed and I have a clean slate, but it can/will come back. Now we’re at a tough crossroads. We need to decide how best to take advantage of this clean slate, what treatment to try to keep it clean for as long as possible, and if we can afford it.
Yeah I forgot to mention that bit: once I finally started feeling like myself again, I got the hospital bill. Pardon my French but HOLY. FUCKING. SHIT.
Oh, and it was the day we bought my husband a new-to-him car, as an anniversary gift/that old car you’re driving is actually going to kill you and you need a new one.
PLUS we’re going on a road trip in two weeks.
So yeah, money is tight and that really makes me depressed. I always feel like such a powerless failure when money is tight. I also feel guilty for being the whole root of the money problem this time.
I mean I was ready to pay a lot, and I already DID pay a lot, but more and more costs just keep coming out of the woodwork.
So yeah. The best treatment would really be pregnancy, but we found out in some post-surgery bloodwork that ooopsie, I’m infertile! In my doctor’s words, “it’s not textbook polycystic ovaries, but……….”
It took a while before I realized that polycystic ovary syndrome is what PCOS stands for. If you’ve ever seen any sort of tweets or pinterest boards about PCOS, you know that it’s always surrounded by gloom and doom.
But that’s a post for another day.
So in short: I feel much better, but I’m not out of the woods yet and I’m still unsure as to where I’m headed next. I will, of course, post here as I go on and think more and get a little less sick and a little more sleep. The bad news is that endo grew a LOT super quick, the good news is it’s gone for now.
And like every step before, this step is just the end of another beginning.