Hi and hugs to the mamas who've posted since my last post. I see that this thread isn't very active.
I was finally feeling pretty good. Allergy shots were starting to work (finally - after 18 months). The IUD has made my anemia go away but it's almost been a year now and I still drain something more often than having days with no protection. I can plan to do activities without going around my period, but it just seems like a long, slow-flowing version that never really ends. I hope to follow up with the OB-GYN in a month or so.
BUT - after having some odd olfactory sensations of smelling phantom smells (usually cigarette smoke that wasn't actually there) and then having a week long headache on the left side of my head which wouldn't go away no matter what I took, I ended up at my ND's office and then in a CT machine. They found a lesion on the left sphenoid bone between my eye and my brain. They ordered an MRI for clarification but that just determined I needed a biopsy. Eventually I ended up with surgical biopsy with a brain surgeon. April 22nd, they took out most of the lesion, with primary reports showing benign activity. They left part of it believing they could zap it with radiation once it was truly identified. Except that they could not positively identify it. They even sent everything to the Mayo Clinic and they were not able to ID it either. It came back "negative" for every test. Recovering from brain surgery is not an easy thing. My mom came out to help us and stayed 3 weeks. At about 4-5 weeks post-op, I went into a depression and so did my DD. It was horrible at times. We elected to put off going back in for another surgery to get the rest of the lesion for testing purposes.
I was in limbo for several weeks during all this time, expecting answers and never having them come. I finally got used to it, until it was time to schedule my follow up scans. Making my appt for the new scans spiked my anxiety. Plus my headaches had come back and my vision started to be affected. My DH preferred to think that things would be fine on my next scan, but I knew they would not be OK. The scans showed that the lesion had grown back into most of the area where they'd removed it (though this time it was not pushing on my brain). It had also grown larger near my eye orbit, pushing my eye muscles around to the point that it was making it painful to focus at times and I was beginning to have auras similar to migraine auras, especially in response to light changes. This showed that whatever it was - we still don't know at this point -- was aggressive. I underwent a second craniotomy to completely remove the lesion July 21st. My mom came out again for two weeks. Yesterday was my first day on my own and I was so dizzy I asked a friend to come by and hang out with me and DD in case something bad happened while I awaited a call back from the nurse. The dizziness was probably a reaction to inflammation near my brain which can affect several things (including nausea which I've also been having). I do not feel dizzy today.
I am still on pain meds and trying to navigate the meds I need to stay semi-functional (emphasis on semi) and the side effects of the medications. After my first surgery I had terrible short term memory loss (kind of like new baby brain when you don't sleep for months) but this second time around it's been much better. I think it's because they did not put me on steroids in the hospital this time since the brain was less involved than the eye. (In both surgeries they did NOT have to open the cover to my brain, the dura.) I felt worse in the hospital this time, but my incision healed much better. (The first time, I threw up from the anesthesia and my incision bled resulting in more staples and delayed healing.) This time, I ended up with a UTI, but it went away easily enough with anti-biotics and lots of cranberry juice.
Now I have an appointment with my neurosurgeon for a follow-up on Thursday. She is pregnant and due any minute so I am just hoping she doesn't got into labor until after my appointment. :-P She told me while I was still in the hospital that the lesion was easily removed, even from the bone, that it was not attaching to any other tissues other than the bone, but they could only excise the bone area. Normally they take a 1 cm perimeter out to be sure of it being gone, but that 1 cm would've included part of my brain and my optic nerve so they left those alone. She said it looked non-malignant (thank you!) and they found some cells which looked different than last time, which may mean that the pathologists will be able to identify it. They still don't know if it's a tumor of some sort (probably/hopefully benign) or if it's an inflammatory/immuno process. I just hope they get some definitive answers this time which indicate it can be treated. I'm also hoping it doesn't include chemo which is one therapy on the table depending upon what it is.
Whatever it is, this condition is extremely unusual, given that it looks isolated (I've been scanned everywhere for cancer and also bone-scanned full body.) The location and everything about so far has been extremely odd and baffling for all the medical people. It's like one of those things that you read about some bizarre and obscure thing happening to someone far away that you've never met, only to find out that it's actually you. It's just surreal that way.
I've seen a couple different docs, including an ophthamologist plastic surgeon for possible reconstruction, but he determined reconstruction would not be necessary due to size and location of excision. Plus he said he was not qualified to reconstruct behind the eye, only in the facial area. He did test my eyes though said the eye is healthy. I am an artist so I am happy about this. I had been studying what it might mean to lose an eye to this thing.
For a while I was calling the thing (lesion/tumor/whatever it is) "Beyotch" after a friend suggested it. I often try to use humor to deal with this mess I'm in. After the first surgery, I read all the Harry Potter books so I had something else to talk about with my DD (8) to keep our minds of everything going on. This go around, I re-dubbed the thing-which-would-not-be-named "Voldemort" because it was reported to be gray, I am sure it is ugly, it's causing me great strife and is threatening my life - plus in the end of the book series Voldemort is finally killed even though he'd returned previously. The last HP movie came out the weekend before my second surgery, so DH and I went to see it the Tuesday before my surgery. I wanted to see it before surgery because I'd recently finished book 7 and we had watched the other films. I also wanted to see it in case my vision suffered more after the surgery.
While I did have double vision after the second surgery - worse than the first - it quickly became monocular vision when my left eye swelled completely shut and turned many beautiful sunset colors. After a few days, the swelling went down enough that my eye opend again. And I can now see better and focus better than before the surgery. I am keeping a blog so I don't have to keep repeating the info to everyone in my circles. And I often get comments of "death to Voldemort" in my guest book. Even the post-op hospital doctor didn't know what to call the whatever-was-removed, so I told him just to call it Voldemort. So maybe as long as I am not a Horcrux, I will be OK.
I hope so. My DD has been very scared and sad and having tons of anxiety. But this time, she is dealing with things in real time rather than stuffing everything and wigging out a month out. She has told me she is scared that I won't be around anymore. This is sad and scary to hear, but I am glad she is dealing with her feeling openly, especially after having a terrible existential depression last summer focused around death.
So it's been interesting (and so much more) dealing with all of this while still managing OCD/depression/panic disorder. My allergy shots are on hold and I will likely have to restart them because it's been so long since my last dose. If this is the case, I will ask them to add in horses to my mix. And I am frustrated that the IUD isn't providing quite what I wanted because according to my ND the only options left we haven't tried are both surgical. And frankly, I am tired of having surgery.
If you've read all of this, thank you for your patience. I hope the other mamas here are getting some relief from their pains and getting better health as much as possible while we all struggle with our ailments while parenting the little people we love so much.