Monday, May 30, 2016

A happy ending in San Jose

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))

Friday, May 13, 2016

A healthy dose of perspective ... again.

It's as if I don't have enough perspective as it is, the universe decides to give me a bit more. I've actually looking forward to this past MRI of my cricoid because the MRI of my C3 went so well. I was optimistic that it was going to go well too - that the tumor on my cricoid responded well to the radiation and that the trach could come out soon, soon, soon. Does it bother me? Not much anymore - except when it gets crusty and I need to go clean it, which isn't too often, about twice a day. It's not even open any more. It's been capped closed for weeks and 99% of my air is going through my nose and mouth. Do I notice it? With the phlegmy side effect of Ibance, I notice it a lot because I have to cough a lot. And then sometimes, I don't even notice I have it. But I still want it out. I want to be able to wrap my arms around my kiddos and give them a big, gigantic hug without moving to the side or adjusting to avoid hitting the trach or telling Camden to be careful when he hugs me. I want to be able to wrap my arms around Mike and sink into him in a supportive hug or lay on his shoulder and not start coughing. I want to see myself in my mom's pictures of me playing with my boys without a trach around my neck. So yes, I was optimistic and hopeful going into yesterday's MRI.

The day started with getting my blood drawn for a regular work up of my CBC (complete blood counts). It's my second week of my second cycle of Ibrance. This is the first cycle at 100 mg, a dose reduction from my first cycle. After getting my blood drawn, we headed over to the Neuroscience building for my MRI. I checked in, got hooked up to the IV for the scan contrast and shortly after I was in the machine. It was about 45 minutes of bad techno music and a really nice nurse walking me through the process. It helps me a lot to hear how many minutes each image will take - it makes the time go faster. I dive into my head when I'm in there - meditating, talking with my body, focusing on what I want to happen ... praying. And soon enough the scan is over, the IV is taken out, and I'm anxious to see the results.

After the MRI I had an appointment with my oncologist. It was mainly to catch-up and talk about my blood counts, make sure I can continue on this dose of Ibrance and that I'm responding OK. My test results came in and my absolute neutrophil count (ANC) is up to 2.25! I was actually surprised to see it be up so high. After the first cycle ended, when I was on 125 mg, my counts were .64. That was at the end of the off-week when you're supposed to rebound from the drug - which means my counts were even lower. So I waited one more week for my counts to continue to rebound. When I started my second cycle, I was at 1.2. So needless to say, being at 2.25 was a surprise. All looks good, so I continue on with this dosage and hope that this is my dose - my sweet spot in the window of efficacy and detriment.

I also talked to my oncologist about the hair loss I have on the back of my neck. I hadn't noticed it until this past weekend when I was having pain back there - like when your hair hurts from being in a tight ponytail too long. When I lifted my hair up and looked in the mirror to see what was going on, I noticed hey - my hairline is higher than normal. This also explains why I have been shedding so much more than I expected. The guess is it's from the radiation to my C3 since that's also relatively high up on the spine. My oncologist says it will grow back so not to worry.

I also ask about my MRI results - can they see the images, can they tell what they're looking at ... I'm hoping for a sooner answer. No - they tell me, the write up isn't ready yet and they can't decipher the images. But the radiation oncologist can tell me. They're my next appointment. I cover a few other things with them, but that's about it and off I go - only a few minutes late for my next appointment ... which is actually a miraculous feat in itself because my oncologist is usually 45-60 minutes late every time.

I head over to my radiation oncologist appointment feeling really optimistic. The day has been going smoothly, things running on time, no hiccups for the day ... the sun is shining. We check in and are taken back into the exam room. My rad onc's resident comes in, a new one I haven't met yet, and asks a few questions, does a quick physical exam and then heads out. The rad onc nurse comes in, asks a few more follow-up questions the resident forgot to ask, and we chat with the nurse while we wait. She advises me my rad onc and her resident are reviewing my images and it might take a while. I'm anxious and hopeful. We chat about Colorado because she has family there and we both know the area ... crazy May weather they're having there right now. I show her my hairline and she agrees, most likely hair-loss from radiation. She warns me that it most likely will not grow back. Oh ... well hmm. I tell her my oncologist says the opposite. She's not so sure but says it's possible. I guess we'll just wait and see. My rad onc and her resident come in. Finally.

My rad onc is really nice, a sweet demeanor. I like her. She covers a few things before jumping into my MRI results - my voice sounds like its getting better, how am I doing overall. Yes, and good overall, I say, feeling good. I'm at the edge of my seat with anticipation for these results. She tells me she reviewed my scan and the write up. Oh good - here we go, I think. She says my airway looks good, nice and open, looks like things responded well, but ...

But? Wait - where is this going, I think to myself. She says this MRI included images of my brain and there's a suspicious spot - a tiny little 5mm spot that the radiologist remarked as highly suspicious in the report  because of my current condition, so a full brain MRI is needed to really determine what it is.

Wait. Back up. WTF.

I lock eyes with her as she's telling me this. My gaze doesn't waiver and neither does her. She's not one to cower away from delivering news like this. I respect her for this. She begins again by telling me that she wanted to tell me before I read it in the report. She wants to explain that it's a tiny spot, and she's not 100% convinced it's a tumor, but that a full brain MRI will tell us what we're dealing with. If it is a tumor however, she says the good thing is, is that they can use the Cyberknife procedure to treat it. It would be a one-time session of 20-30 minutes and it's tolerated quite well. It would involve another mask like we previously used to hold my head still and some steroids to ensure there's minimal to no swelling. The impact to surrounding tissue is very minimal she tells me. She finishes. It's quiet for a few minutes and I start to tear up. I grab a tissue and let myself cry for a few moments. And then I ask to see the images.

She starts by walking me through the cricoid images. She shows me where my airway is in the series of pictures and yes, it looks open to my relief. And then she walks me through the images of my brain. Everything looks solid grey as she scrolls through the cuts, and then - there ... a small white dot starts to take shape as she continues to scroll and she stops on the image where the dot is at its largest. A white dot in a field of grey. Motherfucker. I want to erase you.

What else could it be if not a tumor I ask her. Perhaps a blood vessel she says, but that's why we need a brain MRI because that scan will take much thinner slices of images whereas the current one did thicker slices because it was intended for my neck. How much of my brain wasn't scanned, I ask her. She stops and laughs. You're so smart she said - I wouldn't have even thought to ask that question. She laughs because she knows I'm constantly pushing her and connecting dots other patients aren't connecting. I'm no slouch when it comes to questioning and prodding my doctors about my treatment and what to expect. She says most of my brain was captured in this scan, more than half - guessing about a fourth wasn't scanned. This scan went well above my eyes ... and I can see that in the images.  I ask because I want to know how much I need to prepare for - how much of the story are we not seeing yet. More importantly, I'm trying to deduce what's the likelihood I'm going to get more "suspicious" spots in the next scan.

Good news followed by shitty news. My lightheartedness for the day fizzled in that room, in that moment, when she said "but." The trach is the least of my concerns now. Another healthy dose of perspective ... again.

I'm scheduled for the brain MRI on Friday 5/20. It could have been sooner but they need at least 5 business days to get insurance authorization for the scan first. Of course. I have to wait for insurance.

We left the hospital with tears in my eyes and anger in my fists. I wanted to hit something. But I don't because it hurts and well, let's be honest - I'm a bit of a pansy. I looked at my mom and told her I'm scared. She responds with it's ok ... the universe is looking out for you, letting this be found very early, if it is anything at all. And there it is ... the silver lining. If it is anything, it's found very early - at 5mm in size, less than a quarter of an inch. Why is that the silver lining? Well, obviously because it's small, but more importantly, because it's in an area that isn't scanned unless you present with symptoms first. Meaning - if this scan didn't happen to scan my brain while scanning my throat, and IF this is something, neither my doctors nor I would have been thinking about scanning my brain until I was having issues - like weird things in my sight, or persistent headaches, or vertigo or seizures ... or some other dramatic thing. WHY they don't scan until you have symptoms is completely BEYOND my comprehension. And why would I not be thinking about asking for a brain scan, if I'm no slouch and proactive in my care? Because all the scans that I've had of either just my head or full body, have a section where they remark on what they see in my brain! SO ... because of that ... I assumed that they could see from those scans if there was anything in there. My fault for assuming and not asking. I should have asked and not assumed that just because a scan report says "Brain: ..." that they're actually able to see what's going on in there. Rest assumed that it won't happen again, THAT'S for sure.

After the hospital, my mom, Nicholas and I went into Palo Alto for lunch. We ate, walked around, went in and out of shops and wrapped up with some ice cream. Screw my diet. Ice cream has always been my comfort food. Walking around and taking the time to be out with my mom gave me time to process and pick my head up. First - we don't know for sure yet what it is. Second - it doesn't matter that it's my brain. It's no different than any other area where this disease presented. We treat it like we treat my bones, lungs and liver. If it is something, it was there already, at the same time everything else was found, it just wasn't found yet.

Am I upset? Yes. I'm upset. I'm a little more needy today and worried, of course. But I'm not as low as I could be. I'm hopeful it's nothing, but I'm not blindly so. Cancer doesn't quit. I reminded myself of this a few days ago when I was getting lazy with my supplements and just tired of taking pills. But I kicked myself in the ass - cancer doesn't quit, so I can't either. Cancer doesn't get lazy, so I can't either. Step for step ... attack for attack. As much as I get tired of swallowing supplements, I must do what I must do. I remind myself that everything I'm doing is to help my body heal itself - help my body withstand treatment ... help my body find success ... help my body heal itself, protect itself.

The cancer cells are dying, going away, never to harm me again. My body is strong. My body is healthy. My body is healing itself. This is what runs through my head when I'm in the scanner, and ever other quiet moment I have.