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.



4 comments:

  1. Yes Melissa, you are strong and receiving much strength from your warrior tribe.....led by the high priestist: Your mom.....so thankful that she can be there for you.
    Corliss

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  2. Your cancer cells are dying, going away, never to harm you again. Your body is strong. Your body is healthy. Your body is healing itself. This is what runs through all our heads when we think of you; whether you are in the scanner, eating ice cream or crying to yourself. And we pray for you, your Mom, Mike, your boys and all your family to have quiet moments without fear. For this Lord, we pray. Love, Kathleen

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  3. I just found this. I'm Amanda from the YSC video group we had last spring. The brain-mets only girl. I also don't understand why they don't scan the brain. 18 months before my brain mets dx, I asked for routine brain scans, citing my research that my Her2+ status put me at a higher risk. I was told no scans without symptoms...by the time I developed symptoms, two of my mets were 3cm each. Thankfully I got lucky and they were operable. But it makes me feel a little sick to think how things could've gotten out of control. And the same with your story - I'm SO SO glad yours were caught so early. I'm actually going to lobby for different guidelines re brain scanning. Brain mets have become so much more treatable just in the past few years, yet doctors are letting women risk strokes, brain bleeds and seizures for something that could've very well become a long-term chronic condition. GRRRRRRR.

    I'm also so glad to see that Ibrance is working, that you made your move and that you are enjoying your beautiful family. ❤️ to you.

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  4. You are such a strong woman. I hope it wasn’t a tumor. The good news is they found it early and would be able to take care of it. It’s smart to ask questions about how much of the brain was scanned. I wouldn’t even think to ask that if it were me. I hope you’re doing well by now.

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