Tuesday, August 30, 2016

My heart hurts

This morning:

I sit here at the computer and I don't know what to type. I don't know where to start. I don't know how to feel. The outpouring of love, support and prayers is humbling ... and I love it. It helps me so much. Can a large enough collective consciousness truly impact the energy of the universe? I truly hope so.

Camden and Haley are chasing each other around the house. Cam is going to have so much fun once Nicholas is old enough to play with him. Haley is a great playmate in the interim. Somewhat of a young child herself still - she loves it. I have honestly had to separate the two of them because they get so wild. It's quite the comedy sometimes in this house. And now the moment is finally happening - that I've been picturing since we've moved into this house. Uncle Nic has Camden out on the swing we just put in on the giant, centenarian oak tree in the front yard ... the house is quiet ... Nicholas is napping ... and from my desk I can see them playing ... swinging. When I chose the placement of my desk in my formal-dining-room-turned-2nd-office it was for moments like these. I wanted to be able to sit here ... while working ... and see my children play in this majestic tree and it's wonderful front yard (because yes, the yard belongs to that tree). And seeing this, on this day in particular ... it chokes me up ... and I shed tears of joy ... and terror.

Imagine you're laying down on a table, face up. To the left and the right sides of your head and neck is the bottom of two posts, one on each side. Following those posts up to their end point, there exists a bar that extends between the two of them. Attached to that bar is an incredibly sharp, incredibly daunting, terrifying, menacing blade that's just gleaming. It's sharp. It's lethal ... and just looking at it from a distance - all your senses fire off for you to stay away ... only you aren't looking at it from a distance - you're looking up at it ... because you're lying underneath it, face up. Now imagine you can't get up. Imagine this is how you now must exist for the rest of your life as far as you know. This is where people come to visit you, this is where you eat your food, this is where you sleep. This is where you interact with your children, and husband, and family. This is where you live. How the blade is held up - you don't know. How and when the blade goes up ... or down - you don't know. You just know that it can and it does. Now ... try to imagine feeling comfortable on this table. Try to imagine laughing, loving, joking ... try to imagine watching TV ... try to imagine you actually forget where you're lying ... that it doesn't even cross your mind for a few hours ... that sometimes you don't even see the blade. It becomes part of the background of your view - something that's just always there ... hidden sometimes in plain sight. Try to imagine making peace with existing ... with living ... staring face up underneath the blade of a guillotine. This is what it feels like to have this diagnosis.

I often tell Mike that sometimes I feel like I have the easier role in this. That as my husband - as my family, children, friends - those that have to standby and WATCH this process ... helpless to do anything but keep me company, live with me on this table, cheer me on, comfort me ... pray with me - that they have the harder role to play. To be forced to standby and watch ... and wait ... and just see what happens ... to be kept in suspense ... always waiting for the blade to go up and STAY UP ... all the while trying to figure out what you can do ... anything ... searching for any shred of impactful, actionable information ... all the while offering words of comfort and love ... and hope. The periphery - the sidelines - the bystanders ... my husband, my children, my mother, my sister, my family, my friends - you all have the harder role to play.

Today at 1:30 I'll have a lumbar puncture a.k.a. a spinal tap. During this procedure they'll extract a sample of my cerebral spinal fluid. They'll send it off for testing to determine it's make up ... and if it contains any cancerous cells. The brain MRI yesterday was re-read by a neuro oncologist by the name of Dr. Morris D. Groves. Evidently Dr. Groves wrote the book (perhaps A book) on treating cancer in the cerebral spinal fluid. Hooray for me for being extremely fortunate enough to have a doctor who is seemingly THE guy to have on my team in a situation like this. Seriously. HOORAY.

However - what is hard about having this guy on my team is that it's hard to question his opinion and experience. He read my images with Mike and I hovering over his shoulder. The lesions that were treated with cyberknife look better. He would call the scan "stable to improved" from that treatment. Yes! This is good news. For the questionable leptomeningeal mets ... he agrees ... it's questionable. There are a few areas that are concerning and hard to discern. He did say that there is nothing on the scan that is a "slam dunk" positive for LMD (leptomeningeal disease). This is also a good thing. It is also a good thing that this - if anything - was found in interval scanning, not because I had symptoms - which is another good thing - I am asymptomatic (showing no symptoms). All good things that I am seriously thankful for. But when I asked his opinion, based on what he sees and his experience, what does he assume will be the verdict of the puncture? He said his "hunch" is that it would come back positive for disease.


I had the puncture this afternoon with Mike holding my hand, trying not to pass out himself from the stress and anxiety of it all - situation and procedure alike. It was really hard for me to sign the consent form for the procedure today. It felt like stepping off of a cliff. I don't know why this area specifically just terrifies the shit out of me - but it does. But I have always been the one who likes to have more information than not - but something about the possibility of this test returning positive - something about it is just scary. It's my spinal cord - my brain - my spinal fluid. It's delicate.  But I went through it regardless. I want the information - no matter how hard.

They warned me about the potential for a headache after the procedure. It was at the tail end of the procedure before they were finished that I started to feel the headache set in. I mentioned it. They quickly finished. Picture if you can your brain floating inside your head in your spinal fluid. It's filled to the top with fluid and your brain sits in there nicely, cushioned from the fluid. As they remove some of that fluid, your brain kinda sags ... kinda drops down a bit ... because now it's not floating in the same amount of fluid as it was before. That changing ... that sagging ... is what causes the headache. I felt really spacey afterward. I came home and took a nap for a while. Laying down helps the headaches ... it re-distributes the fluid. As it was coming out - the nurse said it looked great ... like rainwater. She said it had the right viscosity, the right flow - she said it looked great. She showed me. It looked like water. Results will most likely be in at the end of this week. Let's hope and pray that the water is clean.

What's difficult about all of this - is that even if the puncture is negative, the scan is still questionable, and thus the possibility that something is still there. There's also the chance that the puncture is positive, the scan is still questionable, and we have to decide how to treat. What's difficult is it's all still questionable. "We're on the edge of science," his P.A. said to me. There's not a lot on LMD really because it's rare.

I don't know how much more of an anomaly I'm going to be - but I hope against hope that I'm so much of an anomaly that I beat all odds and am one of the extremely lucky ones who - after so many years - is sent home by their doctors because there's nothing left to treat. That they haven't seen any activity in so long that they tell me to stop coming. That's my hope.

So where are we now - what are the options ... what does the path ahead look like. Well - if we get a negative puncture, and because I'm not symptomatic, most likely we'll watch and wait and scan more frequently. If we get a positive test, we need to treat (so says the doctor). To treat it - we can explore proton therapy to the entirety of the spinal fluid. It's difficult, but it's do-able. But it would also put me at risk reaching my lifetime limit of radiation. (Yes - there's a limit.) Alternately, there's the intrathecal catheter in the brain and chemo infusions directly into the spinal fluid on a regular basis. I don't know if he would let me get a positive test and still watch and wait. Why would I want to? Because my ovaries were only removed two weeks before the MRI. I am hopeful that the removal did what it was intended to do - starve out any cells that are still feeding on the measurable amounts of estrogen that was in my body ... and if they starve, they should die. That's the intent. That's the hope. So I am hoping against hope that there's the chance that I could wait and see if the removal was impactful ... IF there's a positive result.

So we sit and wait under IF. We sit and wait under a question mark. We continue on with life - one day at a time ... one moment at a time ... expecting the best ... and surviving on hope.

As I was updating our picture frames throughout the house, I found a piece of paper tucked inside one frame that I used for a wedding photo. It was a frame given to me by a former co-worker when I was first diagnosed in 2010. She wrote the note. It's from one of my favorite poets and very fitting for this time in our lives.

'Hope' is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—

And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—

I've heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me. 

~ Emily Dickinson

Thursday, August 25, 2016

The hard things

Today we did the hard things ... which turned out to not be so hard after all. Purely because we needed to and not because of anything upcoming/pending/unknown/etc ... we met with an attorney to get our wills, trusts, power of attorneys etc. done. It has been something we've been talking about doing since Camden was born, and something we talked about even more so after Nicholas and more so again especially, after my re-diagnosis.

The first time it came up post-re-Dx was during a video support group I participated in for women with metastatic disease. A woman - who after seven months of being on Ibrance was N.E.D. (no evidence of disease) - mentioned she and her husband had just completed theirs. they had two young daughters. She told me that it was actually a relief to get it done. And that she was happy she did it when she was feeling very well. And then that she put it away in a drawer for what she hoped to be a VERY long time.

Ever since re-diagnosis any time I've thought about it - I couldn't help but think that I needed to get it put in place. That it was something that I needed to make sure was done "just in case." What I realized just a few short minutes after being on the phone with the attorney was that it wasn't just me that needed to do it ... but that it was both of us that needed to do it. Why I didn't realize that before - I don't know. Perhaps because unless someone has been "told" they are dealing with something this serious, no one, including yourself, views them as someone who needs end-of-life plans in place. They're still viewed as having "time" to do it. However ... if it's the reverse, there's this weight and pressure to have it done ... to make sure things are in order ... right away. The clock has seemingly suddenly jumped forward an epic amount of time and now there's so many things to be done ... so many things to say ... and not enough time. Also ever since re-diagnosis - any time I've thought about getting things in order - it shattered my heart. Again, because of all that I've just mentioned ... perspective shift.

But we've started the process and it was actually quite un-emotional ... especially because it wasn't just me putting things into place, it was Mike too. It made us both think through how things would go if something happened to one or the other, or both ... or all four of us ... or both of us and one of our designated guardians or trustees ... or if one of us were in the hospital unable to make decisions for ourself and the other wasn't around, who then would make the medical decisions? It forced us to talk about scenarios we have never even thought of. I was glad to discover that Mike and I were on the same page without even having to discuss much prior to the call. That made it easy. I can just imagine how difficult it would be if we didn't agree on what to do with the kids or the estate, etc.

So soon ... the hard things will be done. And there will be a will signing ceremony evidently. And I will also put it away in a drawer for a VERY long time.

Wednesday, August 24, 2016


So I woke up today after getting some decent sleep last night - feeling better. Let me preface it by saying that for the last I don't know how many nights in a row I've been woken up at 3 am like clockwork. If it wasn't Camden being creepy and sneaking in our room at this hour and literally just standing at the edge of the bed staring at me to wake me up and wanting to crawl in bed with us, it was Haley whining to be let out at this hour or it was me waking up to a hot flash and kicking the covers off. Each time it was a bit hard to get back to sleep - in part I think because I honestly have just been conditioned at this point to wake up at 3 am but also because it's harder now since all this happened to just shut my mind off and go to sleep ... especially when things are just quiet. Last night I woke up at 1:30 am but managed to just fall back asleep until 7:45 am. I'm guessing it was finally just pure exhaustion taking over. Whatever. I'll take it.

But yes. I'm in much better spirits than I was on Friday and through yesterday. I'm still very scared. And I'm still very nervous about the potential of what may come. And now every sensation that I have in or around my head and neck is heightened because I'm hyper aware of it and I can't settle on whether or not it's normal or abnormal and it all makes me think, "is that ...?" ... ugh. Paranoia.

But I'm also very much trying to not let the fear of the unknown steal my present moments. I reminded myself that we don't know anything yet and so because of that - nothing has changed, and thus there's no need to lose right now to worry. We won't know anything until Monday and even then - we still might not have a confirmation. So it's better to just put it all down as much as possible and just live for today. Because again - today - right now - is all that there is.

Easier said (written?) than done. It's quiet now - all are asleep. Even Mike. Which is rare that he falls asleep before I do. And as I sit here typing ... as I go through my nightly routine picking out all my supplements, brushing my teeth ... I wonder what it is that's keeping me together. Is it denial? Is it just plain denial that whatever might be revealed on Monday just doesn't exist. It isn't real? This just isn't happening. It is my only way to keep my mind together - to keep me moving through each day? Perhaps. All I know is that all I can hold on to right now is hope. Blind faith and hope that this whole thing is a misread and an error and just residual from radiation. Because I just honestly can't fathom the alternative right now. I really can't.

Tuesday, August 23, 2016

So many things to say

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.

Thursday, August 4, 2016

The Hard Things

 Yesterday I had a laparoscopic bilateral salpingo-oophorectomy.

Yeah ...

In regular words - I had my ovaries and fallopian tubes removed through three little incisions around my belly. My oncologist believes that we are still having difficulty suppressing my fertile myrtle ovaries with the medication and that lab tests show I have measurable amounts of estrogen in my body. Her argument to me was that she strongly recommends the procedure because she doesn't want to have to decide efficacy of a "game changing" drug like Ibrance in a scenario where it's unclear whether or not it was effective because of the presence of estrogen. Since the cancer cells are highly receptive to estrogen, and the estrogen isn't fully suppressed, it could be hard to determine if Ibrance is doing what it's designed to do at it's full capacity. It's a muddy picture and she'd much rather I be in a state where we can really maximize the efficacy of the medication without interference.

So I decided that I agree with her and at 5 am yesterday, we were checked-in for surgery. We were home by noon. They made 2 tiny incisions over each ovary and one below my belly button, filled my abdomen with carbon dioxide, clamped my uterus in place and removed through the belly button incision all the bits that were to come out. They then deflated me and stitched me back up. I'm dealing with some lingering carbon dioxide in my abdomen - I can feel the air bubble thats trapped under my rib cage. It feels like a sharp stabbing pain ... that moves. The air should make its way out over the next couple days.

Needless to say, yesterday morning was rough. It was scary and there was a lot of talk about intubation and making sure there was enough space in my trachea to put down a tube without having to wake me up for it. Thankfully they got the tube down while I was fully sedated, but there was an area at the vocal cord site that was a bit narrow and there was some scratching that happened. So again, my voice is hoarse and scratchy and a bit weak. I'm supposed to rest it. Yeah - like that's going to happen with a 3 year old in the house. I remember crying while I was waiting to go back ... I remember being very anxious about the whole thing ... I remember being wheeled back into the operating room and asked to scoot to the operating table and from there it's blurry ... I don't remember much else until I woke up in the recovery room. I remember hearing them talk and shivering all over - teeth clattering shivering. I remember someone mentioning my shivering and a response from someone somewhere else that said, "it's from the anesthesia." I remember being given a Percocet at what I thought was 10:30 am but was actually 9:30 am I found out later. And then I slept. And then I was wheeled into the outpatient room and there was Mike.

Leading up to this surgery there was a lot of crying. I don't know why exactly. I mean - I understand the reason why I opted for this surgery and it all makes sense logically - but emotionally - I was discovering that I'm quite attached to my ovaries and tubes. Perhaps it's because it feels like they're the last bit of "woman" that I have left. I already had the bilateral mastectomy. If they take out my ovaries - what's left that makes me a woman? Do I just become a shell of a woman? A "used to be?"

It's emotional. I feel like I gave a lot of myself the first time around in 2010. And now I feel like I have to give more. I am giving more. I gave more. And it's hard not to be mad at that. Mad at the situation. I'm worried that I'll turn into this grumpy, unhappy version of myself because of the severe withdrawal of hormones ... so I apologize in advance to every and all if I'm bitchy. I honestly don't mean to be.

There are so many hard things you have to deal with when facing a dx like this. An aggressive treatment plan is hard. Multiple surgeries is hard. Just hearing the news of the dx is hard ... extremely hard ... even harder when it comes 5 weeks after you've given birth. It's hard to allow yourself to get fully connected to your new child for fear of the heartache to follow should you have to leave that child sooner than anyone could possibly anticipate. But you do it - you open your heart and you fill with amazing love for your baby. And it's hard. It's hard to hear of people you've met on this new journey going into hospice, their husbands taking over their Facebook posts because they can no longer do it. It's hard not wondering if every ache, twinge of pain, headache, muscle spasm, dizzy spell etc. is something that needs worrying about or if it's just nothing. And then it's hard worrying about something that might be nothing but ... are you just blowing it off because you don't want to be nutzo about it and it really is something? An endless cycle of worry and hard things jammed in the middle of every day life where dishes still need doing, clothes still need washing, toddlers and babies still need their faces cleaned and hands washed. It's hard. It's hard setting up a new home under the shroud of what might happen. But you push forward. You live your life as you would otherwise because there's really no other option. There is no treatment hiatus because treatment is indefinite. Thus you have to incorporate treatment into your life. You can't quit life's responsibilities just because of this ... and that's hard. It's hard not to wonder "what if" all the time. It's hard to talk about the future without a small shred of doubt always popping up in your mind.

But we do the hard things because we must. Because that is how we live with this ... how we thrive.

I'm recovering well from yesterday's surgery, all things considered. I have already switched to motrin instead of the norco. I try to really minimize the amount of pain meds I take. I like to know much pain I'm having and the one way to do that is to let it happen. I know it sounds wacky, and yes, I take pain meds when I really hurt, but for the most part - I'd prefer to feel the pain so I know what's going on with my body. I see it all as a message. It helps me determine what I need. So I listen, as best I can. And I continue to repeat my mantra in my mind regularly. I continue to call on my body to help do what it can.

My next PET CT and brain MRI is 8/19/16. Results will be reviewed with my onc on 8/23, Tuesday. I'll have completed my second cycle of Ibrance at 75 mg, five cycles in total. And by that marker I've had 10 more sessions of radiation, 45 sessions total. My ovaries will have been out for two weeks and two days. In the meantime, I'm going to enjoy having my mom is town for a couple weeks, followed by my beautiful sister and her trio for a couple weeks before school starts again for them. It's been a year since I've seen them and I can't wait. Before my own kids were born, they were my first kids and I love them to pieces.