Friday, January 29, 2016

Clearing my head

Today we met with the Speech and Swallow therapist to discuss what life would be like while I had the trach in. Not an easy conversation to have. Trying to accept the insertion of a pipe down your throat ... trying to accept an open hole in your throat that leads directly down into your lungs ... not an easy thing to do. It's going to alter my daily living in so many ways. Not just cleaning the device multiple times a day but learning a whole new way to breathe ... to speak.

This all just keeps taking me back to my original diagnosis - when you're told you're really sick but you feel fine. I'm being told I need a trach to protect my airway but I feel like I'm breathing just fine. I know it's a precaution but it's as if someone said, "you need to step off the edge of this cliff to protect yourself." How do you let go of the solid ground beneath your feet for nothing but air in front of you? How do you swallow the fear of what is going to happen ... the fear of the unknown?

Tomorrow I'm scheduled for surgery around 8 am. When I wake up on the other side, I'll have entered a new existence. I won't be able to speak right away. I won't be able to breathe how I've been breathing my entire life. And I most likely won't be able to eat normally for a while as well, until I adjust.

Adjust ... adjusting. Constant adjusting and accepting of new normals. What I wouldn't give to just be adjusting to being a mother of two. What I wouldn't give to just freeze this in its tracks - press pause on it until I'm ready to press play ... when my kids are grown and I've seen them grown up.

I'm trying my hardest to not let these two worlds mix together - to not bleed into one another. Tomorrow will be the first time since we found out a week ago that I won't be able to ignore the collision. I'm going to have to be away from my babies for 5 days. Cam will have to come see me in the hospital. Mike will be bouncing between the two existences, trying to keep the threads tied together. My mom will be immersed with Nicholas in routine feedings and napping. I won't be able to hold my littlest one until I get home ... when I'll be changed into this next version of me.

Can I do it? I know I can. But do I want to? Fuck no - not even in the slightest.

As I sang Cam to sleep tonight I recorded my voice as it is now ... just in case. He's just started learning how to sing along with me and there's never been a sweeter rendition of Twinkle twinkle.

Wednesday, January 27, 2016

A little bit of sunshine

Yesterday was a whirlwind of appointments and we were at Stanford from 9:30 am to 5:30 pm yesterday. We started with my full PET CT in the morning, followed by an impromptu CT of just my c-spine, then a meeting with the neuro oncologist to discuss options for treating my spinal lesion on my C3 vertebrae, a blood panel and then a meeting with the ENT to scope my airway and determine what we need to do. After all of that, my oncologist came in and we discussed things further with the ENT docs until we left the hospital. 

I have to admit, I am really impressed with the amount of coordination between all the doctors I've seen thus far. They all connected yesterday, talked about options for my plan of attack, called other docs and other sources and references and got additional opinions - all while Mike and I were in the room. They included us actively in the discussion and didn't dismiss any of my questions and talked us through the options. I felt very good about the care I'm receiving there when we left the hospital yesterday, and so did Mike.

It's hard to pick a place to start - so I'll start with the little bit of sunshine we received yesterday. The preliminary read of my PET CT told us that the metastasis has not spread to any other vital organs - no liver, brain, or lung involvement - and there is just one other spot on the bone in my left thigh bone. Thus - most of the mets are in the areas we've already identified thankfully. Mike and I cried with relief and joy to receive this news. We truly are thankful for all the prayers and positive energy sent our way. Thank you all - so, so much. That said, we're still waiting for the "official" read of the scan to get all the final details regarding size of the lesion on my thigh and other official details of what's there currently, but we're optimistic ... and so very, very grateful for this news. This news changes my odds and my oncologist was much more optimistic about my prognosis yesterday than he was on Monday - which was a relief as well. We're talking more time - more time for me to be mom, wife, sister, daughter, niece and friend. More time to be me.

That said, the first critical steps we need to take are to secure my airway since the lesion on my cricoid cartilage has narrowed my airway to about half the size it needs to be. The concern is that any additional narrowing will put me in a very dangerous situation. THUS ... the ENT docs recommend a tracheotomy procedure this week. Additionally, because the airway is narrow, they don't think I can be intubated safely so the operation can be done while I'm asleep - which means I will have to be awake when they do it. Needless to say - I'm having lots of anxiety about that. After they get the trach in, they'll put me under completely and do a biopsy on my cricoid and we'll finally be able to get a picture of what we're dealing with. If you don't know what a tracheotomy is - feel free to google it - but be prepared. I'm essentially getting a pipe put down my airway. The pipe will be in for a few months until it's safe to remove. But there will always be the chance it will need to be put back in if the lesion ever returns and threatens my airway again. As far as treating the lesion, that is still up in the air. The initial plan is to attack it with chemo - a more systemic approach - and hope that is shrinks. If it doesn't, surgery to remove what they can and radiation will be the next option. I'm also pushing them to see if using the Cyberknife technology is an option. This is a very targeted radiation therapy. The ENT docs said they've never seen it done before in this area, but to me that doesn't meant can't be done. So we'll see what they say. The issue with the cricoid cartilage piece is that my voice box sits on top of it - so it's in a precarious position. So I'm hopeful we can get it treated with very minimal impact to surrounding tissue.
trach in neck
tracheotomy tube

The next lesion of equal importance is my C3 vertebrae in my spine - the one threatening my spinal cord and spine stability. The left side of the vertebrae is pretty covered with the lesion, so it's pretty compromised. The neuro oncologist wants to protect the stability I do have right now until we get through the procedure to tackle the lesion. For that, we're looking into the Cyberknife procedure - a very targeted radiation treatment that will limit impact to surrounding tissue. Radiation to bone mets is supposed to be very good and supposed to prohibit any future return of growth in that area, which would be great since this is on my spine. So I'm in a neck brace as of today through 6 weeks after  the Cyberknife procedure (which isn't scheduled just yet). Sexy right? 

As an aside - we had to wait for the neuro oncologist for about 45 minutes in the exam room because he was squeezing us in between other patients. While we were waiting, I realized it was the first time in a few days that Mike and I had a private moment just to ourselves that wasn't in bed falling asleep. I asked him if he wanted to make-out since we had some privacy. Might as well take advantage of the time right? :) 

Back on track.

After these two procedures, we'll move into chemo - the systemic treatment to shrink the lesions. We don't know if we can use radiation on the lesion on my left thigh bone yet. We haven't had that conversation with my oncologist. But we will, once we get through these two critical steps. Am I scared? Heck yeah. Awake for an operation? Scary as hell. But it's better than suffocating and having this procedure done as an emergency. Better to be proactive. Am I worried about how the lesions will respond to chemo and subsequent hormone therapy? Definitely. And I'm going to constantly carry the concern about the threat to my airway and the potential for a permanent tracheotomy. 

We made it home around 7 pm last night. Camden was avoiding his dinner and Nicholas was napping in the swing. My mom was waiting to have dinner with us, so we all sat down with Cam. And after dinner, we had a dance party. We turned up the music, danced with Cam and each other and just enjoyed being a family. Even Nicholas got in on the dance moves. And after everyone was asleep and Mike and I were turning in for bed - we got on our knees and gave a million thanks for this little bit of sunshine in the middle of a storm. 

I feel better today than I did on Monday. More optimistic about my prognosis. While this is still going to be a life-long battle, with intervals of scans and treatment in between intervals of regular life - it's life. It's my life. And I'm sure as hell not going to let go of it.

Tuesday, January 26, 2016

Those first steps

The first step on a long journey like this is incredibly scary. It's like stepping into an abyss with only your faith and love to get you through to the other side. We don't know if there are any other spots in my body that we need to deal with. We don't know how my specific tumors will react to the various types of treatment. We don't know a lot of things and we also don't know if knowing those things will help us at all right now. Fear, right now, is our biggest emotional hurdle. Fear of the unknown. Fear of the statistics.

The first oncology appointment was rough. My oncologist repeated the information, the statistics, that we've all been scouring the internet for. It's really difficult to read and digest ... even more difficult to have it said to your face, directly applied to your situation.

What we do know is that the lesion on my spine is a concern. It's pushing into the epidural space and threatening my spinal cord. It's also threatening the stability and strength of my vertebrae, which also threatens my spinal cord. My case was presented this morning at the spine tumor board at Stanford and they will determine if surgery is necessary to stabilize my vertebrae, or if we can just start with radiation. The other lesion that's pushing on my windpipe is also a concern obviously. Two really important structures of my body are the priority as well as getting a full picture. Once we have a full picture, we'll know what the treatment path is going to look like.

For me, I think these early stages are the most difficult for me. I'm a planner, a project manager, a compartmentalizer ... and not having all the pieces right now sends me into discovery mode, question mode, research mode ... what are my options mode. A constant weighing of new information against known information, trying to navigate to the best plan of attack for the situation.

For my family and friends ... my heart breaks for them. I know what it's like to be in my shoes - where I can go through treatment and feel like I'm doing something to combat this. But for them, I can't fathom what it's like to be in their shoes. For them it's a feeling of helplessness in a situation where all they want to do is help, help, help - where all they want to do is take it away, go through it for me, or find the secret to success. It's a paralyzing position to be in - on the periphery.

When we finally left the hospital and walked into Teresa's house to get Cam - those first steps up the walkway - I had to stop myself from running inside. Not out of fear or worry, but out of joy and excitement. After an agonizing few hours before, just the thought of scooping him up in my arms, hearing him yell "Mommy!" "Daddy!" and running to us with open arms, and then launching into a tirade description of what he's doing, what he's building, what he did today, asking us to come play, yanking on our arms to come into the playroom ... it drove away so much sadness, filled me with so much joy and relief. He is a healing balm to my spirit.

Getting home, Nicholas was in Lulu's arms (as usual) and had just finished his 6 pm bottle. His bright little eyes were open and alert. Evening is supposed to be a fussy time for young babies - to release any extra energy from the day. (Cam took advantage of his fussy time with dedication ... and without hesitation.) But Nicholas ... so far his fusses are easy, half-hearted ... as if he's saying I'm fussing, but I don't really mean it. He's such a happy little guy, easy to settle and actually demonstrates a minute or two of patience when he knows the bottle is coming. Holding him, looking into his eyes, feeling his energy- his spirit - brings me calm.

And that's the clash of this whole situation. You bounce from sterile and impersonal, devastating statistics that threaten your future existence to being mommy and daddy - to play time and rocket ships, and bottles and burping, to pajamas and storybooks and bedtime routines.

Sunday, January 24, 2016

The first 48 hours

Why does shit always happen on Fridays? It's like the universe wants you sit with that shit all weekend - unable to take any action - and just think about it.

How it all started: I was in the end of my second trimester of my pregnancy with Nicholas. I woke up one morning with a noticeable pain on the left side of my neck. I figured I slept wrong and went about my business. The pain persisted as the days went on and progressed to a noticeable loss of sensation from my the base of skull to about the top of my shoulder. It's like that feeling when the Novocain is wearing off but hasn't yet completely - you have some sensation but not much. I also had occasional tingling. If I did too much or was too active that day, I'd get a burning sensation in those muscles and would only find relief from resting my head back. I tried massage and chiropractic adjustments and they didn't help. So I kept on, dealing with it, accepting that it was most likely just from being pregnant and that post delivery, things would remedy themselves.

I also had a cough and it was hard to breathe. Again - I though just a symptom of pregnancy. My belly was high - little guy was sitting up in my rib cage it felt like - and I assumed the upward pushing on my stomach and ribs, lungs, etc... was the culprit. My OB thought I was having some silent reflux. So she advised I could take a regiment of Pepcid daily to help calm the cough and some tylenol nightly to help ease the pain in my neck. They both helped somewhat. So I kept on - again - assuming after delivery things would resolve.

At the urging of husband, mom and mother-in-law, I went in for an MRI to check my neck. The pain hadn't gone away completely but it had subsided and instead of taking Motrin around the clock, I was only taking it at night sometimes at 4 weeks postpartum. I was just going to wait - give it more time - since it seemed to be resolving. But they said I needed to go. So I did. The cough also calmed down, but is still present. I still feel like I can't breathe at times. Other pregnancy pains have pretty much resolved. I'm feeling more stable - like my joints are starting to harden back up. I still have some pain and some weakness and instability in my hips when I try to get up from a seated position on the couch or from on the floor.

So I had my first MRI on 1/21/16 without contrast. My PCP called me that night and said I needed to go back because they saw something on my scan and wanted to do it again, this time with contrast. So I went back on 1/22. The fear had set in overnight. Halfway through my MRI, when it was time to inject the contrast, I broke down crying. My fear got the better of me. I told the techs my fear and that I just needed a minute. I pulled myself together and finished the scan. My PCP called us later that night with the results.

"Impression: Multiple infiltrative aggressive lesions identified within the neck most compatible with metastatic disease. First, the most concerning lesion (size: 2.4 x1.2 x1.9 cm) is centered within the cricoid cartilage with causes 66% subglottic tracheal narrowing. Second, partially imaged is a superior mediastinal lesion (size: 4.2 x 3.1 cm) which narrows the left brachiocephalic vein and superior vena cava. Third, a large metastasis (size: 3.8 x 2.0 x 1.3 cm) centered at the left C2-C3 facet joint with an associated moderate pathologic fracture of the C3 vertebral body, mild epidural extension, and circumferential encasement of the left vertebral artery. Further evaluation with a contrast-enhanced CT of the neck, chest, abdomen and pelvis is recommended for staging. Given the airway compromise, an ENT or thoracic surgeon evaluation may be appropriate."

Not included in the overall summary, but in the detail, is a nodule on my thyroid of 1.0 x .06 cm as well as some fluid around the top of my right lung.

So what does this mean? It means I can't breathe because I have a lesion growing and pushing on my windpipe. It means the pain in my neck is caused by a moderate fracture of the vertebrae because the lesion there has degenerated the bone and made it weaker, while also pushing on a nerve. It means I have a lesion encircling a major artery in my spine, also creeping into my epidural space toward my spinal cord. It means I need more imaging. It means we haven't ruled out yet that this hasn't spread anywhere else. It means every weird twinge of pain or odd sensation I have right now makes me pay attention and take note. It means lots of breakthrough crying for everyone - for me, my husband, my mom, my sister, my family and friends. It also means I'm trying very hard to live in the moment and not in my head. It means lots of extra kisses and hugs and "I love you"s to everyone around me. Most of all, it means I have to put on not just a fighter face  - but a warrior face.

Days without incident: 0

Unbelievable - beyond the realm of something that's possible. And yet it's not - because it's happening. And if something is happening, it has to be possible ... believable ... no matter how surreal.

It's like we're existing in two different worlds right now. In the world I want to stay in, we have an amazing, happy little 5 week old son. He looks just like his big brother and is just as happy. We're feeding every three hours and working on sleeping through the night. We're blowing through newborn clothes (and diapers) and just jumped up into the 0-3 month size ... which looks like he'll be out of soon too. He's tall, like his brother, like his daddy. We have a super energetic, super sweet, soon-to-be 3 year old - who looks like he's 5, because he's tall too, like daddy. We're working on pooping in the toilet ... and not jumping on his brother ... or the dog, or the couch, or daddy, or mommy, or Lulu ... or just not jumping in general right now. (He's jumping on my back right now as I write this.) We have a 6 month old puppy, who's got a cone on her head because she just got spayed, and it's comedy to watch her walk through doors, eat her food, hoover the kitchen floor and do just about anything with that darn thing on. She loves to lay on her people and still tries despite the cone.

In this world that I want to stay in, we have my husband. A man who, despite his own very trying health issues, is doing his very best to keep up with his energetic toddler, is trying to remember all the little things that go into caring for an infant, and is taking care of his wife. He's making sure she's eating, drinking water and has enough coffee to fuel her postpartum days and efforts at keeping up with a busy household - all the while not exerting herself too much until her body has fully recovered. A man who loves his wife, and his family, more than anything.

And in this world is me. A wife, mom, sister, daughter, niece who is about to take a huge step into an alternate universe. A world of the unknown where my fear is my own worst enemy. A world where I have to find a way to pull my body back in line and get it to cooperate with me ... and not rebel. A world of medicine and big, highly technical words, white coats, needles, tests and statistics. The last time I entered this world, the world I wanted to stay in froze. It was easier to manage. This time the world I want to be in can't stop and I have to learn to exist in both and not let them bleed too far into each other. I have to do what I need to do in one world, and do it effectively, so I can forever stay in the world I want to stay in. So I can live the life I want to live. The life I need to live.