I don't know where to begin - there's so much to cover! Two weeks ago while checking the review of my MRI for my cricoid we found out that there was a spot in the brain that needed more imaging. Thus, we had an MRI of my brain on Friday 5/20, a week and one day after the MRI that revealed the spot to begin with. My docs reviewed the scan the same day, called me with the results and low and behold there are actually 3 spots that needed attention. The first spot in the bottom right area was 7 mm in size as well as a smaller 2 mm spot in my cerebellum, that was too small to be seen on the MRI of my cricoid, and another 4 mm spot in the upper left of the brain. "The good thing about BC mets is that they're nice and round," is what my neuro surgeon and his resident told us. It's quite an odd statement, right? ... The "good" thing ... They make this statement to elaborate on how much easier it is to treat lesions like this with the Cyberknife procedure. Cyberknife works best with spots that are nice and round and have easily defined edges. (We considered this type of radiation initially when discussing my C3, but decided that IMRT radiation would be better since it wasn't nice and round.) So, in a rush, my amazing oncology treatment team got me scheduled for the neuro consult on the following Tuesday, the Cyberknife Simulation on Wednesday and actual Cyberknife treatment on Friday.
Mixed into this week was my interval PET CT scan on Tuesday as well as my monthly oncologist visit with injections and an ENT appointment on Thursday. I also had a gynecologist visit on Monday that week because I had interval spotting that could have been a light cycle or post-menopausal bleeding the week prior ... so it needed to be checked out since I'm supposed to be clinically suppressed. And then of course, Mike had his regular medical appointments on Tuesday as well.
Still with me? There's more.
In addition to all the medical appointments, we also were closing on the sale of our town home and had to meet the HOA "to-do's" in 1 day so as to not delay closing (which consisted of repairing the screen door, re-keying 3 sets of french doors that we didn't even know had key locks, and pressure washing the concrete patio) and then sign final documents the next day as well as monitor the initial walk-through of our new house in Austin, TX and go back and forth with the lender to make sure there wasn't any delay on getting the new loan into the closing process. Oh, and to back up a bit - to kick off the insanely busy week we also managed to take family portraits on Saturday morning (thanks to my amazing Deloitte friends for the gift certificate for the session, a gift for my baby sprinkle for Nicholas ... and they would be proud that I managed to use it since I confessed at the time that I'm just terrible at doing family photos! So thanks guys, you know who you are! It was a great session.).
So needless to say, we are eternally grateful for my mother AGAIN for being here and taking care of Nicholas, exercising Haley and managing all the vendors coming to the house, as well as the buyers wanting to spot by, AND getting her company payroll done WITHOUT wifi! Because yes, that also went out for a few days and I was back and forth to Best Buy fixing the router and modem, etc. on top of everything else. We are also very grateful to our realtors in both states for doing the heavy lifting and getting us through the necessary processes to keep things on track.
SO - where does all this leave us? A little dizzy ... a little chicken-with-it's-head-cut-off ... but most of all ... grateful. So very, very grateful.
Yes the MRI revealed spots that needed treatment, but we're grateful the spots were caught early and at such a small size. The efficacy of Cyberknife to spots under 1 cm jumps to about 99% effective for local control (meaning controlling growth of those specific spots) from 95% for spots over 1 cm. It's a small but very important increase in my eyes. I need and want every edge I can get.
Overall the Cyberknife treatment was incredibly tolerable. I described it to my sister as follows, "They lay me on a table, put a mask over my face and a robotic arm rotated around my head and shot beams of high-dose radiation at my brain for 50 minutes while I listened to classical music." To which she replied, as only my amazing sister can, "Fuck yeah." Damn right.
My rad oncs said I shouldn't have any side effects since the spots were so small. They were right. I don't notice anything. Which ... is a little disconcerting right? Because throughout this whole process side effects are the only tangible thing you have to gauge treatment has happened and is doing something ... no periods because of menopause, low white blood counts because of medication, sore throat and disappearing pain from radiation ... and oh yes, a pipe sticking out of my throat. All things to indicate treatment has happened. Cyberknife didn't have any of that ... which ... again, I'm grateful for because it's my brain ... and ya know ... I really didn't want any side effects or complications in that area knocking me down. We re-scan in 3 months with a brain MRI to check (and confirm) success of the treatment.
Regarding my scan results - things are stable to improved - which is great! It's a little difficult to get your mind around, let alone articulate, the scans because it is a comparison between the PET CT and the diagnostic CT to get a full picture. The diagnostic CT shows the details - the spots of concern - and the PET CT shows the areas that are "hot." If something is hot, it means it has high metabolic activity and is absorbing a lot of the radioactive tracer, which is indicative of spots where there is cancer. SO ... what my scans revealed is that the spots that were treated with radiation (left iliac, C3 and cricoid) were not hot (this is great!). They also showed that the other spots that we are handling with the systemic treatment (Ibrance and anti-homorne therapy) are less-hot compared to my scans in January and there is increased sclerotic (scarring) activity in the bones in those not-so-hot-as-before spots (also great!). For the spots in the center, the hilar lymph nodes area - the area with the larger masses - no change in size and also less-hot. The liver ... no corresponding hot spots on the PET to match the spots the diagnostic CT is showing. Did you catch that? My liver has no hot spots (very good!). The lungs ... stable tiny nodules (14mm or smaller). The description around the lungs is a little tougher to understand because of language used to describe the anatomy of the lungs in general is complex and then combined with the language of the scan ... it's a lot of looking stuff up. But overall - stable spots. SO - good results on that end.
Things that still may require attention ... my left femur. The hot spot there is yes - less-hot, but still hot enough for the radiologist to suggest that I'm at risk for pathologic fracture. My radiation oncologist reviewed the scans and said that she doesn't think it needs immediate treatment (as in rushing to get it in before we move) but that it may be something I want to consider once we're up and running again in Austin, since it is a weight bearing bone. Might be better to just radiate it and get it scarred over sooner rather than later. Same goes for my right iliac.
Also requiring attention - follow up with a gynecologist in Austin in a few weeks to make sure the ovarian cyst my current gyn found (yeah, add that to the plate), is on its way to disappearing. The PET did confirm however that the cyst is fluid filled and not solid and also, you guessed it ... not hot. (It was nice to have that just be a completely normal ovarian cyst!) If we can't get my estrogen under control in the next few weeks to months, I will have to consider switching the type of anti-hormone treatment I'm pursuing or having my ovaries removed altogether. A bridge I will cross later ... when and if that bridge appears at all.
And finally, to end the week after really good news on Thursday, my trach came out on Friday! Totally unexpected and totally exciting. My ENT walked in and handed me a referral for an ENT in Austin - to which I assumed meant it wasn't coming out ... a sentiment I verbalized to her. She replied with not necessarily, let's scope you and see. So up the nose goes the scope and things look the same, which is good. Both she and the ENT who did my surgery reviewed my cricoid MRI and they said it all looked good, and that it really was up to me and how I felt ... how my breathing felt specifically ... to which I told her felt fine. That I didn't even notice my trach was closed most of the time and that I sometimes forgot that I even had it in. To that she said ok, let's take it out. And just like that - a procedure that required general anesthesia and 5 days in the hospital - the trach comes out by just pulling it out and taping a piece of gauze over the opening. No stitches, no surgery ... just gauze and medical tape and about a week for it to close on its own from the inside out - which it's doing nicely. After a day and a half actually, no air could escape through there anymore. And it feels amazing. It actually feels even more open than it did simply because the trach itself was an airway obstruction. And, oh yes ... I'm not coughing anymore, so maybe that pulled intercostal muscle can finally heal now.
And with all of this now done ... Mike and I have 3 days to just breathe. My mom and Lolo packed up the boys and drove them down to San Diego to stay for a bit while we finish the move-out. We'll meet them down there in a few days, rest and hang with the fam for a day or so, and then continue our drive with Haley over to Austin. Lulu and Lolo will then fly the boys over to us a few days after we arrive.
I know there's a lot I haven't addressed in this post ... like wait - what? We're moving to Austin? ... yes, we are and yes, we haven't really said much about it. But I'll save that until we get down there and it will all hopefully make sense. Instead, I leave you with a few of my favorite pics from the portrait session. I can't wait to get some of these printed to canvas for the new house! (and yes, the photographer Steven Cotton is editing out my trach for me (some of these are unedited))