Wednesday, November 16, 2016

Guilt

I didn't make it to the store last night. It was 5:30 when I got both boys buckled in from their respective daytime care. Camden seemed in a decent enough mood when I picked him up. Nicholas was happy as well despite reportedly not sleeping well at all during the day and having an irritated bottom. They were fine when I decided, yes - I can make it through errands tonight. It was close to 6 when we made it to Walgreens to pick up meds. 15 minutes later, after waiting in the drive-thru pharmacy line that was 8 cars deep, Camden starts crying because he wanted to go to the store and was sad that we weren't going anymore. Yup. 15 minutes was all it took for me to say F this whole thing - we're going home. Both had suddenly melted down and turned into gremlins in the span of 15 minutes. And I was well on the way to crying myself.

30 minutes to get home. 25 minutes into that drive Mike texts me and asks me how's it going. That was the straw. Tears start flowing and texts start flying. The light takes for freaking ever to process the massive line of cars to get on the two lane "highway" that leads to our neighborhood. I pull in the garage, get the boys inside, take one look at Mike and just breakdown in tears. He scoops up the boys, puts them in the playroom and asks me what's wrong.

What's wrong is this - guilt. As a mother, you love your children immensely. Nothing will change or lessen that. Sometimes however, mothers get tired of their children. They get tired of their tantrums, of their crying, of their neeeeeeeediness. It doesn't mean they don't love them. It just means they are human. But because you admit to yourself that you are just fed-up with them from time to time - that you have secret visions in your head of shipping them off to your mother's or sister's for an extended period of time, and how easy things would be while they're away - you feel guilty (and you know you wouldn't stand an hour without missing them tremendously). "I should have more patience" you say to yourself. "He's only 3. He doesn't even know what he's doing," or "He's just crying because he's tired." You discount your depleted stores of "amazing Mom," take a deep breath, regroup and speak to them again with more patience in your tone and a little more room on your plate.

But that's the kind of guilt a mom in a normal situation feels.

What I feel on top of this "normal-guilt" is "totally-unfair-guilt" for not treasuring every moment with my amazing boys because who knows how many moments I actually get with them. This guilt that I've squandered precious moments with my sons because I wasn't patient enough - strong enough - tolerant enough - understanding enough ... and now I've wasted moments I'll never get back. I feel guilty because I've lost moments and because my plate is full and because I'm not handling things as good as I should be and ... and ... and.

And then Camden sees me crying and asks me what's wrong. He comes to hug me. He tells me he's sorry he made me sad because he wanted to go to the store. I scoop him up and tell him firmly - "NO. You did not make mommy sad. Do you understand? You did not do this." "The why are you sad?" he asks. Oh my darling child if I could explain it to you I would. Instead I tell him sometimes people are sad just because. He accepts that answer and then asks me for Cheerios for dinner. And then I feel guilty for crying where he could find me. And then we pour him a bowl of Cheerios for dinner because - whatever. And then I feel guilty for feeding him cereal for dinner.

(Yes, I was raised Catholic. No, this is not Catholic guilt. Although it's pretty comparable.)

I have an MRI this Friday of my abdomen and of my left hip (again). My PET CT from this past Friday was not as wonderful as we would have hoped it was going to be. Spots that were cooling off on the last scan, are now heating up again. 3 spots in my right lung and it's "indeterminate heterogenous uptake" in my liver (hence the abdomen MRI). There's a spot in the socket where my left femur fits into the pelvis that is also active. This could be from radiation but since I'm going to be on the table, my onc thinks why not, let's add some time to your already long MRI-sesh.

My bones look good however, so that's really great. It doesn't explain the pain I've been having in my right rib cage - but I'll take unexplainable rib pain over PET activity any day. My brain MRI also showed good things. The two spots that remain visible on the scan are each smaller in size by 1 mm.

So for now, we hold. While to me - it seems like this is a bad scan and that things are the forever dreaded progression -- to my oncologist, she doesn't think it's necessarily progression and doesn't want to remove me from a potentially effective therapy too soon. "It's a marathon," she tells me. We need to ride each treatment as long as it's possible and safe. She is OK with us scanning again in 3 months, unless something changes during that time. And of course if nothing worrisome is revealed on this Friday's MRI. There's potential that this flare-up will resolve on the next scan and be nothing. Some women in some of my online support groups indicated they've had this happen. The other quirky thing is my absolute neutrophil count is 3.3. It's double where it's been hovering for the last 8 months. Is it a sign that Ibrance is failing? Since Ibrance usually hits your neutrophils hard and mine have actually rose - I don't know what to make of it. There's the chance that on the next scans this activity progresses further. If that happens, we change treatment. If not, we continue to hold. I hope for holding.

I'm not ready for treatment to change. I'm tolerating this regiment very well. What's on the horizon is unknown - and it's scary. It feeds all the stress and causes all the lack of patience and inability to handle everything - anything.

For now we hold steady and go through the holidays with a known treatment despite an unknown situation. In the new year, we hope for newer and better things - across the board.

Wednesday, November 2, 2016

Walking the line

So it's been like - a whole month and a half since I've written. That's pretty amazing. Even now, it's hard for me to focus on writing. But I know if I don't ... I will "pop" as Mike describes it. So here goes - here's what's been happening.

There's this line that exists - between blissful ignorance and daunting knowledge. It's on this line that I live lately. Sometimes - most times - living on this line is anxiety provoking. You might as well name this line "Anxiety." (I hereby dub theeeeee anxietyyyyyy). I've never had an issue with anxiety until this year. I am one of the most even-keeled, steady personalities you will ever meet. I even list it on my resume as a "Key Strength." It's one thing that has always been reliable about me. I come to the table with a consistent personality, with few exceptions. It's one of the things I'm sure Mike loves about me too. We even talk about how we were expecting waaaaayyyyy worse from my personality post-ovary removal. Instead - it's been OK. Not very different. Which I'm (and my loved ones are haha) super thankful for.

So needless to say, I am weak in identifying what anxiety feels like in my body. For a few weeks around and after my last blog post, so late September, I was having a very consistent pain in my chest - same spot, each time, near the "mediastinum" area of my right lung where the scans noted activity. It would come and go throughout the day, but when it would come, it was enough to draw my focus to it and evoke verbal complaints. Add to this my last lab work showed a small increase in the CA27-29 tumor marker. Note - since we started monitoring this marker (Stanford never monitored this. My onc here does. They can be unreliable to a degree.) it has steadily decreased from 171 down to 80ish. The increase was up to 101. Combine this marker and the pain - I went in to see my doc. I was supposed to have a full 4 weeks without a doctor's appointment. It would have been the first time this year. Instead - I made it 2 weeks. I went in - but I was disappointed I didn't get the full 4 weeks off. I met with the nurse practitioner - she told me not to worry about the marker, that 20 points isn't a big deal and could very well be a calibration issue. "Hundreds of points" she says, in her Russian (I think?) accent, is a concern, not "this small change." She says she believes it's anxiety, but that she's willing to order a scan for me. I decline the scan. I want to trust her that it is anxiety and that I can get through this until my next PET. I go home. A few days later, I email her and ask for the scan. I couldn't do it. I needed to know because the pain was still there.

And this - right here - this is the line. This is the line that I try to walk every day. I try to figure out how I am supposed to balance on a knife's edge between knowing and not knowing and accepting and rejecting.  It's no wonder I've now had at least 5 panic attacks this year when before I've only had one my entire life, which happened to have been during chemo in 2010.

So I go in for a CT of my chest. I get the radiologist's read later that same day. All looks good - no crazy, out of control, mass growing and compressing my lung, causing the pain. Of the two lung nodules, one is stable and consistent with the last scan, and the other is smaller. Great-freaking-news. I breathe. The radiologist also notes a slight thickening of my esophagus behind my sternum, but states it could be esophagitis. (I'll come back to this side-bar in a moment.) So - it's anxiety. But why?! We were at a point of freaking calm! We got past all those appointments with the neuro onc and we weren't supposed to come back for 4 weeks and scans were in 8 weeks. I started back to work and things were slowly getting on a rail. And then I talk with my friend and she tells me about "delayed stress response." Essentially, now that we were in a period of less-stress, my body was finally processing all the high-stress from before. There was finally room for it.

Two weeks after the CT, I was due to go in again for my monthly visit to the onc. We do labs. We meet with my onc. She goes through her regular set of questions - assessing my current status. All is well. I feel well. I'm not having the pain any more and I'm happy the CT was good. But then she goes into her guarded tone of voice and begins to discuss the CT results. She says the radiologist noted the thickening of my esophagus. Have I had any difficulty swallowing, have I noticed anything at all ... ?Shit. Seriously? I read that "esophagitis" and took it as such since everyone in the household has been battling a cold-bug thanks to school and daycare. Is it something I need to be concerned about? Fuck dude. But when she talks in her guarded tone of voice - it puts me on alert. I will rant for a moment however - because she has yet to go through my images with me - and I don't know that she looks at the PET or CT images herself at all and instead I think she just reads the radiologist's written report - and that irks me to an endless degree. End rant. However - a rant to say - I'm not sure whether or not to be on alert because it very well could be a cold as much as it could be something else.

And again - I'm there. On the knife edge - walking the line between thinking I knew what I knew about a "good" CT scan and not knowing "what else" might be there. It freaking sucks.

The appointment wraps up with her concluding we'll watch it and she orders my next interval PET CT scan for November. My neutrophil counts come back above 1 so I am good to start cycle 8 of Ibrance. A few days later I also get word that my CA27-29 marker is down to 60ish.

So here we are today - I'm back at work full-time and have been for a month and a half now. My next PET CT and brain MRI is scheduled for 11/11. The anxiety over the upcoming scans is already ramping up. I was full of worry about it the other day until Mike reminded me to enjoy the position we're in right now - enjoy not knowing for now. I try. I turn my nervous energy to other things - like essential oils and landscaping and researching house plants that can survive in a super sunny window with lots of direct sunlight. (FYI - peace lilies are NOT suitable for this location.) Oh and Nicholas came down with an ear infection, which has recently cleared with the help of antibiotics, only for us to find out at his follow-up appointment to make sure that his ears were clear, that he now has hand-foot-mouth disease, not to be confused with the livestock version of the virus. Yeah - I thought it was just a drool rash and diaper rash. Evidently it's crazy contagious so that has me freaking out as well. My hands are super dry from all the hand-washing trying to make sure I don't get sick. But thankfully his ears responded well, and the ear infection is gone.

So for the next week and a half, I will try to enjoy sitting on the knife-edge of where we're at today - between a good scan, a questionable spot and the weight of the next scan pressing down on us - while trying not to catch hand-foot-mouth and working full-time again and preparing for the holidays and Nicholas' first birthday. Oh and trying to teach Camden NOT to ask for EVERY toy that is advertised on TV.









Thursday, September 22, 2016

The things I don't talk about

Let's talk about the things I don't talk about. The things I carry with me each day - silently - as I go about my business living as close to a normal life as I can. The things that weigh on my shoulders - things that I didn't even know were there - until they've been lifted.

Every morning I wake up and the sleep the night prior was OK. I often wake up in the middle of the night. Sometimes it's just because, sometimes it's because Nicholas wakes ... other times it's because Camden is standing silently next to me and his presence alone startles me awake ... yeah those aren't the fun wake-ups. Those are the creepy, send your heart racing, why are you standing there in the dark watching me wake-ups. Always fun. But when I wake in the morning, I'm usually only semi-rested, and I'm creaky. I put my feet down and they hurt. They're stiff. I reach for my glasses and my hands are stiff. They hurt also from the lack of movement all night. I also am experiencing trigger finger with my middle finger on my right hand. It just locks up in the bent position if I try to make a fist and then it "pops" when I open my fist all the way. For the most part, these aches in my hands and feet start to go away as I start to move. But there's always some level of ache to them and I'm constantly stretching my fingers and toes throughout the day.

The next thing I usually notice when I wake up is a pain in my spine. The location varies, but it's usually always a sharp ache somewhere along my spine. Some days it's worse ... some days it's better ... but most days it's always there. It started shortly after my oophorectomy and I can only thus attribute it to the severe withdraw of estrogen. In addition to these usual suspects, most often there's something new each day. An ache, throb, pain, twitch, creak, pop, stab, pulse, twang, knot, crack ... you name it ... somewhere else in my body. Big deal right. Everyone has regular aches and pains. I get it. And it's not the creakiness and errant odd feeling that bother me so much as it is what it does to me mentally. Being in treatment causes me to be hyper aware of my physical state. As someone who was already hyper aware of her physical state in general ... this takes it to a whole new level. Each "thing" I feel - I carry with it a monitoring. When did I first notice it? Is it getting better or worse? How long has it been? Do I need to bring it up to my doctor? Is it something ... no - its nothing ... or is it something? It's a constant assessment of my physical state day to day, hour to hour, minute to minute ... over and over again ... worrying if it's progression ... if things are just running rampant inside during this period of in-between scans. It gets exhausting. But I keep going - every day - assessing quietly and taking a mental catalog as each day goes on. Add to that, the current situation with the brain. Every headache, every ANYthing I feel in or around my head - or anything anywhere else in my body - is there something going on in my brain that's causing this? - is it a dehydration headache or something more? Am I going to go down in a seizure right here and now? UGH.

In addition to this physical assessment, there's the daily fatigue. Having low counts in your blood causes fatigue. I'm tired. I usually make it to just past 9 pm before I'm crawling in bed myself and am passed out shortly thereafter. If I stop moving, I will fall asleep. I'm sure of it. So I keep busy as much as possible - either physically or mentally. I just keep going. I'm up with the boys at 7 am usually and in bed shortly after they go down. Most of the time I've got energy enough to keep going full steam all day. But some days, a big outing is enough to slow me down and I end up wanting to nap with the boys when we get home.

So there's the physical part, the mental part of the physical part, the mental part of the mental part,  and the fatigue. And then there's Fear. Is eating "this" feeding the cancer? Should I be doing more? What if what I'm doing now is making things worse? How long will what I'm doing work? Will I have to have IV chemo again ... or worse? Any regular conversation that talks about the future - future plans, future milestones for the boys, future vacations, future anything ... its all haunted by the fear ... will I be around to see these plans come to fruition? How long am going to feel "good?" Will I be around to see my boys start school ... start middle school ... high school? Do I dare to dream  ... dare to hope ... that I get to see at least one of my sons get married? The fear isn't always front and center ... no. It's most often a passing thought ... an errant question that runs through my head quickly in the moment ... a hypothetical visualization of who and how I might be - or who and how I fear I might be ... a shadow that follows my thoughts. It's there when I look at Nicholas and wonder ... does he look so much like me because I'm not going to be around much longer? Is he my mini-me for a reason? Or is it purely just genetics. And if it's not just genetics ... and if something does happen to me ... will Mike, in time, be able to look at his sons without significant pain in his heart? And my boys ...

I wonder about this ... and many, many other things ... and I worry every day. But I won't go much farther down this path. These are things I don't talk about for a reason. There are things that come with the territory unfortunately and well ... there's no use dwelling on them. No use losing the present to fear and worry. So I let go of what I can and shove that which I can't, down into the depths, until I'm able to let it go.

These last few weeks have been seriously trying. The "questionable leptomeningeal enhancement" on my brain MRI in August had us all in a serious frenzy. The suggestion of it at my initial neuro appointment injured my spirit in so many ways. It brought Fear front and center. But thankfully - thankfully - thankfully - my rainwater cerebral spinal fluid (CSF) came back 100% normal. My neuro onc at this most recent appointment said it would be one thing if it was "mostly" normal, with some things slightly abnormal - but mine coming back 100% normal was a good thing. He reviewed my follow-up brain MRI - and Mike and I stood anxiously over his shoulder - I'm watching the scans and watching his eyes and expression as he's reviewing - trying to get a read on his reaction to what he's seeing ... and then he pushed back from the computer screen (he sits about 8 inches away from the screen when he reviews images) ... takes his glasses off and says, "I don't see anything here to get excited about." And then suddenly I feel SO MUCH LIGHTER. I breathe. And I tremble with relief. I grab Mike's arm - or hand - or shoulder - I don't remember. I just grab him. And I get back to myself and start to ask questions - What about the questionable LMD spot - left temporal left cerebellum region? You don't see that? He puts his glasses back on, scoots up to the computer and looks again. He swaps out views, scrolls, swaps out more views, scrolls some more ... No he says. And I don't remember much detail after that.

Overall, he concluded that things look normal for me. Two spots of the three spots are identifiable, but smaller and stable. One spot he can't even find anymore. The questionable LMD area is not there - "Most likely a vein" the radiologist's report said. So we breathe finally. And we are thankful. So very, very thankful.

I re-scan in two months, which is back in sequence with my regular timing for my 3 month interval PET CT and MRI. I started cycle 7 of Ibrance with Letrozole - with sincere hopes that it continues to work much, much, much longer (aka forever). I started back at work this week as well - which I'm actually excited about, to get back into some normal life again.

And above all - I give sincere thanks for each moment and I dare to hope ... just a little bit more ... each time I hug my babies or hold Mike's hand.



The things I don't talk about

Let's talk about the things I don't talk about. The things I carry with me each day - silently - as I go about my business living as close to a normal life as I can. The things that weigh on my shoulders - things that I didn't even know were there - until they've been lifted.

Every morning I wake up and the sleep the night prior was OK. I often wake up in the middle of the night. Sometimes it's just because, sometimes it's because Nicholas wakes ... other times it's because Camden is standing silently next to me and his presence alone startles me awake ... yeah those aren't the fun wake-ups. Those are the creepy, send your heart racing, why are you standing there in the dark watching me wake-ups. Always fun. But when I wake in the morning, I'm usually only semi-rested, and I'm creaky. I put my feet down and they hurt. They're stiff. I reach for my glasses and my hands are stiff. They hurt also from the lack of movement all night. I also am experiencing trigger finger with my middle finger on my right hand. It just locks up in the bent position if I try to make a fist and then it "pops" when I open my fist all the way. For the most part, these aches in my hands and feet start to go away as I start to move. But there's always some level of ache to them and I'm constantly stretching my fingers and toes throughout the day.

The next thing I usually notice when I wake up is a pain in my spine. The location varies, but it's usually always a sharp ache somewhere along my spine. Some days it's worse ... some days it's better ... but most days it's always there. It started shortly after my oophorectomy and I can only thus attribute it to the severe withdraw of estrogen. In addition to these usual suspects, most often there's something new each day. An ache, throb, pain, twitch, creak, pop, stab, pulse, twang, knot, crack ... you name it ... somewhere else in my body. Big deal right. Everyone has regular aches and pains. I get it. And it's not the creakiness and errant odd feeling that bother me so much as it is what it does to me mentally. Being in treatment causes me to be hyper aware of my physical state. As someone who was already hyper aware of her physical state in general ... this takes it to a whole new level. Each "thing" I feel - I carry with it a monitoring. When did I first notice it? Is it getting better or worse? How long has it been? Do I need to bring it up to my doctor? Is it something ... no - its nothing ... or is it something? It's a constant assessment of my physical state day to day, hour to hour, minute to minute ... over and over again ... worrying if it's progression ... if things are just running rampant inside during this period of in-between scans. It gets exhausting. But I keep going - every day - assessing quietly and taking a mental catalog as each day goes on. Add to that, the current situation with the brain. Every headache, every ANYthing I feel in or around my head - or anything anywhere else in my body - is there something going on in my brain that's causing this? - is it a dehydration headache or something more? Am I going to go down in a seizure right here and now? UGH.

In addition to this physical assessment, there's the daily fatigue. Having low counts in your blood causes fatigue. I'm tired. I usually make it to just past 9 pm before I'm crawling in bed myself and am passed out shortly thereafter. If I stop moving, I will fall asleep. I'm sure of it. So I keep busy as much as possible - either physically or mentally. I just keep going. I'm up with the boys at 7 am usually and in bed shortly after they go down. Most of the time I've got energy enough to keep going full steam all day. But some days, a big outing is enough to slow me down and I end up wanting to nap with the boys when we get home.

So there's the physical part, the mental part of the physical part, the mental part of the mental part,  and the fatigue. And then there's Fear. Is eating "this" feeding the cancer? Should I be doing more? What if what I'm doing now is making things worse? How long will what I'm doing work? Will I have to have IV chemo again ... or worse? Any regular conversation that talks about the future - future plans, future milestones for the boys, future vacations, future anything ... its all haunted by the fear ... will I be around to see these plans come to fruition? How long am going to feel "good?" Will I be around to see my boys start school ... start middle school ... high school? Do I dare to dream  ... dare to hope ... that I get to see at least one of my sons get married? The fear isn't always front and center ... no. It's most often a passing thought ... an errant question that runs through my head quickly in the moment ... a hypothetical visualization of who and how I might be - or who and how I fear I might be ... a shadow that follows my thoughts. It's there when I look at Nicholas and wonder ... does he look so much like me because I'm not going to be around much longer? Is he my mini-me for a reason? Or is it purely just genetics. And if it's not just genetics ... and if something does happen to me ... will Mike, in time, be able to look at his sons without significant pain in his heart? And my boys ...

I wonder about this ... and many, many other things ... and I worry every day. But I won't go much farther down this path. These are things I don't talk about for a reason. There are things that come with the territory unfortunately and well ... there's no use dwelling on them. No use losing the present to fear and worry. So I let go of what I can and shove that which I can't, down into the depths, until I'm able to let it go.

These last few weeks have been seriously trying. The "questionable leptomeningeal enhancement" on my brain MRI in August had us all in a serious frenzy. The suggestion of it at my initial neuro appointment injured my spirit in so many ways. It brought Fear front and center. But thankfully - thankfully - thankfully - my rainwater cerebral spinal fluid (CSF) came back 100% normal. My neuro onc at this most recent appointment said it would be one thing if it was "mostly" normal, with some things slightly abnormal - but mine coming back 100% normal was a good thing. He reviewed my follow-up brain MRI - and Mike and I stood anxiously over his shoulder - I'm watching the scans and watching his eyes and expression as he's reviewing - trying to get a read on his reaction to what he's seeing ... and then he pushed back from the computer screen (he sits about 8 inches away from the screen when he reviews images) ... takes his glasses off and says, "I don't see anything here to get excited about." And then suddenly I feel SO MUCH LIGHTER. I breathe. And I tremble with relief. I grab Mike's arm - or hand - or shoulder - I don't remember. I just grab him. And I get back to myself and start to ask questions - What about the questionable LMD spot - left temporal left cerebellum region? You don't see that? He puts his glasses back on, scoots up to the computer and looks again. He swaps out views, scrolls, swaps out more views, scrolls some more ... No he says. And I don't remember much detail after that.

Overall, he concluded that things look normal for me. Two spots of the three spots are identifiable, but smaller and stable. One spot he can't even find anymore. The questionable LMD area is not there - "Most likely a vein" the radiologist's report said. So we breathe finally. And we are thankful. So very, very thankful.

I re-scan in two months, which is back in sequence with my regular timing for my 3 month interval PET CT and MRI. I started cycle 7 of Ibrance with Letrozole - with sincere hopes that it continues to work much, much, much longer (aka forever). I started back at work this week as well - which I'm actually excited about, to get back into some normal life again.

And above all - I give sincere thanks for each moment and I dare to hope ... just a little bit more ... each time I hug my babies or hold Mike's hand.



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.

Tonight:

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

Denial

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.

Yeah.

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.





Tuesday, July 12, 2016

Austin for life!

Why in the world - in the middle of everything going on - would we up and move to Austin?! THAT is an amazing question and I will attempt to answer it, because I'm not even sure we know all the reasons just yet - but we know the main one ... because we just wanted to.

If you've ever been lucky enough to choose where it is you want to live - to actually pick the place you want to make a life for yourself, and not be somewhere because you were moved there for work or other circumstances or because that's where you've always been (which there's nothing wrong with either of these reasons) - then you know the sense of happiness, sense of freedom and unique sense of connection to the location it brings you. I've been lucky enough to do it twice in my life. The first time was my move to Denver right after I graduated college. It was the best decision I had ever made as a young adult. I had $2,000 to my name, just finished college, dropped everything and moved. I learned what it was like to live on my own and be a fully fledged adult where I had only myself and my close friend to rely on. I learned how to cook for one (it's not easy), how I like to spend my fledging adult mornings in my new place (with quiet and coffee, sitting on the roof looking over the pool), and I learned what it truly meant to stand on my own two feet. I met Mike there. We bought our first house and adopted our first dog there. We had Camden there.

The second time was this move to Austin. A fantastic work opportunity for Mike moved us to San Jose. One could argue that we "chose" to go there and so it's the same thing. In my eyes, it's not really. The choice was to work for a company who happened to be located in the bay area. If that company were located elsewhere, we would have ended up elsewhere. So to me the location was an add-on. Austin on the other hand, was chosen after months of research by both Mike and myself - chosen as a future location for us to put down roots and raise the boys. The beliefs, culture, life approach, schools, cost of living, space ... it all very much appealed to the direction we wanted to take our life ... in a few years.

And then our current circumstances changed dramatically. At first all I wanted to do was run home to San Diego to be closer to my mom. I was terrified and I didn't know how we could keep everything running without her. How were we supposed to manage everyday life with a newborn and a toddler and everything that comes along with that as well as my insanely crazy slurry of medical appointments AT THE SAME TIME. Not possible without momma within a 20 mile radius.

And then more and more days slowly passed and we got a tiny bit farther down the road of treatment and learning to live with this on our plate. Medical teams were established, progress was being made ... we were starting to breathe a little. We started considering where to move once more. I could drag you through the him'n'n'hawing and highly emotionally charged conversations Mike and I went through to even get some tiny bit of semblance of a sense of direction (let alone the turmoil to actually pull the trigger on a decision), but I will spare you the fuss and pull you forward instead. In the end, we chose to move forward with our life plans to make our home, our life, where we wanted to, without other influences. Austin happened to still be the best option for what we wanted all around. Yes, it lacks any family in the area, but it puts us in the middle between my mom and sister and actually closer to Colorado where Mike's mom is. It also puts us within 3 driving hours to MD Anderson ... a nice perk. There are wonderful schools for the neighborhood we chose and all of the other reasons I've already mentioned are still a factor. We even have friends who - moving for similar life reasons from southern California - are right around the block coincidentally. It the end, it still made sense, when everything else certainly wasn't.

It's been a month now in the new house and it certainly has been a whirlwind. We're 99% unpacked and established in the house. The boys and Haley have adjusted. We've found a pre-school for Camden and even a babysitter (which we didn't have in the entire 3 years in San Jose because I'm ... well ... me). I'm even driving without GPS already ... for the most part. We've had a water gun fight, been to the children's museum, set off our own fireworks, have had landscaping quotes (painful), pool quotes (more painful), rain gutter quotes, painting quotes, and numerous other vendors parade through here as well. Camden also started his first fire (you don't want to know) and now we own a fire extinguisher. In the midst of all of this, I've also established care at a new oncology office and have picked up treatment right where we left off.

Since San Jose, I completed one more 100 mg cycle of Ibrance and letrozole (cycle 3), am in the final week of 75 mg Ibrance and letrozole (cycle 4 / 1st cycle on dose reduction because my neutrophils were too low at the end of cycle 3), have had an MRI of my left femur, right hip and C3, and have had another injection of Xgeva. We left San Jose shortly after completing the cyber knife procedure to my brain, but follow up for that isn't happening until August. My new oncologist also strongly recommends I have my ovaries removed because I'm still not remaining clinically suppressed and my estrogen levels are pre- to peri-menopausal. She strongly believes this is one of the best things I can do for treatment above all else. She made the case that she would hate to have to make the decision that I would have to be switched off a new, revolutionary drug, like Ibrance, that I'm tolerating really well aside from neutrophil counts, because I'm having progression, and it's unclear if that progression is from failed ovarian suppression or because Ibrance isn't effective. So out they must go. I had the consult today with the gyn who will be doing the surgery and it was an emotionally difficult consult to say the least.

The MRI of my left proximal femur revealed that 100% of the marrow space is being taken up by the tumor. I have no pain thankfully and thankfully it's contained in the marrow space still. Docs say I am at risk for a pathological fracture and because of where the tumor is located on my femur - which is the little diagonal bone on the top that links into your hip - that if it does fracture, I'd most likely have to have a hip replacement. So ... radiation starts on Thursday this week, 10 sessions like before. Most likely after that, if my neutrophils are high enough, my oophorectomy surgery will follow, anticipating the first Wednesday in August (evidently the gynecologist only does surgery on Wednesday ... kinda like our neighbors who do pizza on Fridays ... it all makes sense).

But let's talk about this radiation decision for a moment. My scan also showed activity in my right iliac and if you remember, we treated my left iliac because I was having pain there. I currently don't have pain in my right iliac. However, I wanted to be pro-active and wanted to radiate my right side since I'd be coming in for treatment anyway to my left femur and I'd rather not wait until I have symptoms, because to me, that is too late. I posed this as a question/please weigh-in scenario to one of my mets Facebook groups and the feedback I received was interesting. What those more experienced with mets than I recommended - was that I don't radiate my right iliac if I'm not having pain. They said that it's better to save that treatment until I have pain or really need it. Because there's a lifetime limit on how much radiation one can have, they are advising to save it. They've planned for the worst and they are advising me to do the same, just in case. My optimistic nature drives me to move forward and tackle it all now, be proactive, use the resources I have at hand now, to eradicate the cancer that exists now ... not future cancer that may or may not exist. I am optimistic that I'm going to continue to respond very well to the current treatment and that I will have a very, very, very long time where we don't see any progression or change. But perhaps they're right - that despite my optimism, I should temper in some caution ... just in case. So I've opted to radiate just my left femur ... for now.

In the mean time ... we continue on ... we go forward and meet our vida loca head on ... business as usual. We go on, making our home ... growing our roots in Austin, living our life, a life we chose.

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.



Saturday, April 23, 2016

Slow and steady

A lot has happened, despite the happenings being baby steps. Our first piece of good news is that my C3 is stable! Hooray! The MRI showed "healing" and no encroachment in the epidural space (read as:  the threat to my spinal cord is under control). The vertebrae is no longer fractured and my c-spine is stable when flexed (I did a flex test via x-rays to make sure). The neuro surgeon, who was very adamant about me wearing the neck brace AT ALL TIMES (even sleeping), looked me in the eye and said "I just don't see what we saw in your last MRI. Call me if you start having pain." And that was that. So with confidence, I can continue not wearing the neck brace and breathe a little easier.

And I am breathing a little easier. This week we also had another ENT scope appointment of my airway. It's always nice to hear happy surprise in your doctor's voice, especially when you have cancer. They didn't expect to see much change in my airway but they did. Shortly after my last post I was given a steroid dose pack to calm the inflammation in my airway, which is what the rad onc was suspecting was causing me to not have my voice. The steroid dose pack was a 6 day taper, starting with a highest dose and working down to the lowest dose. On day one, after the very first dose, my voice started to return. I was SO happy. It was really hard to not use my voice too much as it was coming back. Honestly, I didn't even try not to use it. I was just so happy to have it back I was talking as much as possible. Thus, this latest ENT appointment was post the steroid pack, and I am honestly breathing easier. I have had my trach capped (closed) for weeks now. All breathing is happening through my nose and mouth now. I *almost* feel normal ... *almost* forgetful of my trach. So it begs the question, when can it come out? Not for a couple months still. They want to see stability for a few months so they can be confident about taking it out. Evidently it's a bit harder to put a trach back in once you've had one. OK FINE. I'll wait, because I certainly don't want it put back in. I have an MRI for my cricoid on May 12th to check it out and see what further progress we get with a little bit more time.

And speaking of healing ... I'm waiting to start cycle 2 of Ibrance. During my 7 days off the drug I had a blood draw to test my white and red blood cell count, and a host of other things ... currently, at the end of my off week - which is designed into the regiment to allow your body to bounce back from the effects of the drug - my absolute neutrophil count is at .64. Under 1.0 and you're at serious risk for infection and the docs worry about your body's ability to fight off an infection. So ... all of this means that my body is responding to the drug ... yay! It also means that we need to wait another 7 days and test again before I can start cycle 2 of the drug. If my counts this Thursday are equal or greater than 1.0, I can start cycle 2. My doc is also going to lower my dose of the drug to 100 instead of 125. It's a window she she says ... a window of efficacy where the drug does its thing but not so much as to seriously hurt my body (my bones specifically since white blood cells, etc. are created in your bone marrow). Balance ... finding balance is what we need.

She also said the MRI of my C3 is a good report. The fact that it's showing healing is encouraging because she says that they don't see healing in one area and "bad" things happening in other areas ... which is good. It makes me hopeful that the other areas that didn't get radiation are healing as well from the systemic meds. In late May, I'll have another full-body PET CT of everything to see if this is the case. Fingers crossed for that one for sure.

I keep reading stories about women who are living - and living well! - 10, 15, 20+ years since being diagnosed with metastatic breast cancer. It's encouraging and inspiring, as well as a lifeline. With some of the breakthroughs that are in the news lately - the understanding about how cancer cells metastasize, how they interact with the immune system, the advances in immunotherapy, the Cancer Moonshot initiative - all of these breakthroughs continue to build up hope that new, more effective treatments are coming, and coming soon.