Kind of.
Sort of.
Maybe?
I spoke to both Dr. Cook, and my regular OB/GYN today. My Alaskan doctor called around 1 this afternoon. She didn’t have much to add that I didn’t already know. She was pretty confident that the new cysts I had growing were in fact endometriomas, mostly because I’ve never had cysts turn out to be anything else whenever we’ve opened me up. She said she had reviewed the tapes from my most recent surgery, and that everything had been done meticulously. She then said that she would be shocked to see new growth back already – if it was anyone but me. It was reiterated to me that I have one of the most aggressive cases of endo she’s ever seen, and that there’s really no rhyme or reason as to why my body seems to be producing it at the level it has been. But that given what we’ve seen in the past, it shouldn’t be that big of a surprise either.
Which is frustrating, because I want more answers than that. I want to know why my case is so aggressive. Why we can't seem to stop growth. Why I don't respond to treatments the way others do.
I feel like these are things people should be looking at. But then I also understand - no one really knows what they should be looking for. My hormone levels all look great. My lifestyle is as good as one could hope. I've done all the research, followed all the protocols, and tried everything anyone has ever told me to try. There's something else going on here - but no one can even begin to comprehend what that may be.
She offered up another round of Lupron as a possible treatment, but I explained that I’m just not in a place to be wanting to go there again. As much as I’m dreading the pain I fear may be coming, I would dread the side effects of Lupron even more. The exhaustion. The nausea. The depression. The never once feeling like myself the entire time I was on it. And the fact that even on Lupron – I still had new growth.
It’s just not worth it.
I thanked her for calling me, and she asked me to come back in for another ultrasound in 6 weeks. She said we could assess the growth in that time and attempt to monitor the situation. I really do love this doctor for how much she cares, but I know she’s been at a loss with my presentation for a while. I know she doesn't know what else to tell me.
Which is why I sought out Dr. Cook in the first place.
He and I had our phone consult later on this afternoon. He was actually more optimistic. Even hopeful that maybe (just maybe), what we’re seeing on those scans aren’t actually endometriomas.
He made the same request for another ultrasound in 6 weeks. He said at that point we could make some determinations about how to proceed. If it is endometriosis – it will grow in that time. All the cysts (2 on each side) are currently under 2cm; which is very small in the grand scheme of things. There’s the possibility that they are scar tissue, or any other number of things at this point. If we see growth in 6 weeks, we’ll know it’s something to worry about. But until then – he told me to remain calm.
He said that it would be almost unheard of to have new growth at this early stage post-surgery. That if anything, it’s more likely that something was left behind this last time around. Remnants that were somehow missed which have been allowed to spread since that time.
This is of course assuming that what we are seeing is endo. And if it is – we will come up with a game plan in 6 weeks.
In the meantime, he wants me returning to physical therapy. I tried to explain that my time with Dr. PT had actually left me entirely underwhelmed. That I had attempted 3 visits with her, and each had entailed a lot of talking accompanied by her giving me exercises to do at home. Exercises I could have just as easily looked up online. I told him that it was just one more appointment that was taking me away from work, and that it simply hadn’t seemed worth it anymore – so I had quit going.
He immediately got online and started doing research on PT’s in Alaska. By the time we got off the phone, he had a name of someone he wanted me to try. And he was already working on the referral.
The reason he is so adamant about me trying physical therapy again is because of the low back pain I’m complaining about now, combined with the muscle spasms I presented with when I first saw him. Dr. Cook says that there is a muscle called the Psaos muscle which runs behind the ovaries and connects to the lower back. He said that at this point, it wouldn’t be entirely off base to assume I could have some scar tissue forming back there which could be leading to this low back discomfort. Either way, he said a good physical therapist should be able to tell if that’s the situation fairly quickly.
He also wants me to get another CA-125 level ordered. Not because it can tell us anything definitive per se (I’ve had elevated levels in the 40’s pretty much since this adventure began), but because at least it’s one more thing to look at. If my levels are low, or even nearing normal – perhaps it can give me even more of a sense of calm about the situation. And if they’re high – well, they’ve always been high. So it wouldn’t be anything new.
Other than that though, we’re looking at 6 weeks.
6 weeks for me to be good to my body.
To be good to myself.
And to hope for the best.
While planning for the worst.
After the 4th, I’ve decided that I’m going to go back to gluten and dairy free. Not because I put a ton of weight into the success of the endo diet (after all – I’ve tried it in the past without much in the way of results), but because I feel like I have to be doing something. And because I might be getting a bit of nagging from a good Alaskan friend if I don’t get back on the wagon here soon.
And over the next 6 weeks, I’m going to attempt to ignore that discomfort I’m feeling. I am going to get out and enjoy Alaska; getting physical whenever the sun is out. I am going to spend time with friends, and the boy. I am going to laugh, and smile, and enjoy this life I have to the fullest. I am going to continue separating myself from this disease as much as I can possibly muster.
At least for 6 weeks.
I’m going to do exactly what Dr. Cook told me to do.
Not freak out.
Not yet anyway.
Whatever this is, we’ll figure it out.
And in the meantime; I’m going to choose to ignore it.
Because I refuse to let this disease steal yet another amazing Alaskan summer from me.
Not this time.
And not ever again.
ADSPACE
