I feel like there's always so much to say. As I get back to more of a regular life, working on projects around the house, visiting with family, running after the kiddos ... I just move through my days mostly as if nothing has changed. And then before I know it there's so much to say that's been held behind the barricade that I feel like I HAVE to write something and then ... when I sit down ... I don't know where to start.
I guess I'll start where it's easy to pick up - recovery from the ooph surgery. I'm doing great. I was up and around back on my feet very quickly (most likely too quickly for Mike and my momma because they were quick to remind me whenever I picked up Cam or tried to move furniture myself that I shouldn't be doing whatever I was doing). The incisions are healing wonderfully for the most part. The left incision over the left ovary was acting up but is now much better. The glue didn't hold the incision together as good as it should have and the end of the stitch was poking through, so it didn't close as neatly as intended. My body was working hard to push the knot of the stitch out and I managed to help things along by cutting the stitch out myself. I'm a picker, and hey - if I can work it out with my hands and my cells can just focus on healing, even better. Besides it didn't hurt so I was OK pulling and cutting stitches ma'damn self. But aside from that, I feel very much like myself. The withdraw of hormones doesn't seem to have hit too terribly. I have hot flashes but that seems to be the only major menopause effect right now. I'm pleasantly surprised and quite happy about feeling so normal. I was worried I'd be sweaty and mood-swinging like a rabid monkey during a banana frenzy.
My gyn did call me about a week after surgery to tell me the results of the pathology from the surgery. They sliced my ovaries up and looked at them under the microscope. Evidently there was microscopic disease in both ovaries but not the tubes, thankfully. She also did what's considered a "wash" inside the abdominal cavity - like a rinse with some fluid and then they suction the fluid out and test it to see what's floating around in it - what kind of cells. She said there were some abnormal cells floating around in that fluid as well. Hard to hear for sure - but we knew all this already. We may not have known these locations specifically, especially if they're microscopic in nature - but we knew we were dealing with metastatic disease so ... I'm not surprised?
My quarterly PET CT and brain MRI was on Friday 8/19. I got the results for the brain MRI on Friday and for the PET, it came through on Monday. Today I met with my oncologist.
I don't even know where to start with the brain MRI because I feel like after reading the results - and researching the terms I didn't know - that I was hit with the diagnosis all over again times ten. First let me mention that the radiologist initially did not do a comparison read to my last brain MRI ... so ... naturally I called them and emailed them and harassed them and voila - an addendum showed up today at my oncologist's office while we were scheduling the next set of appointments. Nonetheless, it doesn't change the findings. The 3 lesions that we treated with Cyberknife are smaller, as far as I can tell without seeing the images. (Yes, my new onc office doesn't/didn't have access to the images yet which really irritates me.) The 7 mm one is down to 4 mm, the 5 mm is down to 3 mm and the 3rd one he doesn't make a comment on in the addendum for some reason.
What is scary is the first read says, "questionable abnormal leptomeningeal enhancement seen in the region of the cerebellum and left posterior temporal region of the brain. This is not a definitive finding and should be further evaluated with a lumbar puncture, as clinically indicated." The addendum further adds, "The area of curvilinear enhancement noted in the left superior cerebellum is not clearly seen on the previous study and appears to be a new finding."
Why is this scary? Because the "leptomeningeal enhancement" refers to the meninges (men-in-geez) around the brain - which is basically the protective membrane all around your brain and central nervous system. IF (and I mean a BIG F'IN IF right now) there is mets to this membrane things can get real shitty, real fast. Treatment for this is the insertion of an Ommaya reservoir - which is essentially a catheter inserted into your brain that sits in the space between your lobes. It is accessed like a chemo port is accessed, so its under your skin, about the size of a dime, and they infuse chemo through it into your cerebral spinal fluid. To start its twice weekly, and then it tapers down to a mere once a week. For ... fucking ... ever. And "forever" in this case - my doctor says she has patients with this that have been doing it for years. And Dr. Google says a dx of this means months - despite treatment.
Needless to say getting this report and researching everything on Friday made for a heavy, anxious, tense, emotionally tumultuous weekend. I'm scared shitless. I don't want brain surgery. Things weren't supposed to be like this. This wasn't supposed to be how this happened. We were supposed to be talking years ... not months. I have so much that I want to say to my family, to my children. I want them to know me - to be old enough to remember me. I don't want to spend the time I have left slowly declining cognitively that I don't even know who they are - that I don't even know who I am. Losing myself terrifies me.
We meet with the neuro oncologist on Monday so he can review the images and make a more educated decision on what he sees on the images. He's most likely going to want a lumbar puncture, a.k.a. spinal tap, to test the fluid for mets. My neuro onc at Stanford is also getting a copy of the images and is going to give me his read as well. Did I mention I'm also already on the books at MD Anderson on 9/12 to establish care there? That was set up before all of this came raining down.
And then Monday happened and my PET results came through. Everything in my body is responding to my current treatment with flying colors. No more active mets are seen in my bones. My liver is clear. Of the two nodules that were in my lungs, both are smaller in size and one is no longer active and the other is only mildly active. The mass that sits in the mediastinum area, near my right lung and superior vena cava - it's shrunk by more than half and is only mildly active. The pleural effusion that was happening around my right lung is also gone. Gone. Gone. Gone. Gone. Gone. A great result that so many women would LOVE to receive. And don't get me wrong - I'm fucking ecstatic. And I'm fucking terrified at the same time. I absolutely needed this dose of hope, especially right now.
So why is my body responding to treatment and my brain looking questionable? Because of our beautiful body's creation - the blood brain barrier. It's nature's most excellent filter. Only "good" things go in. Pharmaceuticals are too large to pass through. Hormones however - go through. My ooph surgery was only 2 weeks prior to the scan. My hope? That now that I'm officially in menopause and not producing estrogen from the ovaries, that this severe decline is enough to starve any bad cells hiding out behind that barrier. I certainly feel more spacey sometimes and wonder more often where I put things or what I was doing. (I've learned to say "oh well" and just do something else in those moments and my wanderings around the house eventually remind me of my initial purpose ... usually.) My other hope? That this degradation of the membrane that they're seeing is residual effect from the C2-C4 rads to my spine and subsequent Cyberknife radiation that soon followed. My meditation right now? "Negative puncture, spontaneous resolution."
Other hopes right now? That the neuro onc agrees with my hormone and radiation theories and adopts a watch and wait approach with me. Let's scan in another 4-6 weeks. And oh look - nothing there. No need for brain surgery.
This is what I'm holding on to right now. This is where I hold hope. I pray each moment for the miracle that will allow me to see my two very young boys grow to an age where they can actively recall their mother ... know her laugh ... and her wrath, and laugh about her wrath when they're older ... know her now-altered, but not too terrible, singing voice ... know her smile, and what her hugs feel like ... Where they can confidently say they know what her love is like - and how fierce it is for them, and her family and those she cares about. Where they can remember most of what I want to say to them ... the so many things ... of which - the most important - is how much I love them.