Wednesday, February 22, 2017

From the husband's perspective by Mike Bingham

I’ve been pretty quiet on the blog lately, mostly because I wasn’t sure how to sort out my thoughts, feelings and emotions. It has been unbelievably crazy in our lives during the last 12 months that most days I am convinced that none of this is real –or at least I hope that it is not. Its changed my perspective on pretty much everything. How I see my kids, my job/career, my friends, my time and my relationship with Melissa. Everything is different. Many things have actually changed for the better. It provides perspective, and allows you to focus on what you truly care about each day without regret.

Sitting in the doctor’s office after her latest scan, I think we both knew something not so pleasant was coming. Progression. Melissa’s title for the last post is aptly named. It is an unsettling, anxiety provoking word that instantly increased the urgency of our meetings with her doctor this past couple of weeks. You can feel the swirl of uncertainty and concern in those meetings has increased since we received the results.  Her doctor used the phrase “critical real estate” to describe the liver, and rightfully so. She needs her liver healthy to process the drugs she takes to protect the rest of her body. If the liver does not function, the options become limited and her disease becomes much more dangerous.  

The stress of everything that has taken place over the last year has taken a toll of me physically. I have anxiety and waves of panic. I don’t sleep particularly well most nights, and the tension in my head neck and back feels almost unbearable at times. Most days you pray for the world to pause long enough to get some air, as normal responsibility is always there waiting for us after we deal with our “other life.” Melissa and I have talked about how it feels like we are balancing two universes, trying to keep the kid’s lives as normal as possible. We try to have normal days and to appreciate the small things that we may have taken for granted prior. But this is difficult. Every morning I wake up and start my day with the sinking feeling that my wife’s life is threatened and that death may truly do us part way before I ever thought possible. I have nightmares about speaking at Melissa’s funeral, with her family in tears and my young kids staring at me looking for answers. I have anxiety about trying to raise two kids on my own, knowing that I am completely inadequate compared to their mom, and that their life will never be the same. None of it makes sense, but unfortunately, so many people are faced with this challenge. So many families are impacted by this disease, too many fathers, mothers, sons and daughters are lost to this illness every day. I try to appreciate what I have right now, today, in the moment, and not spend all of my time thinking about the worst case scenario. I know that I will regret wasting away this time agonizing over something I cannot control.

A few weeks ago Melissa and I were able to go to the Super Bowl. I am a life-long Patriots fan (you hate them too? Sucks to be you) and with the game being two hours away in Houston, we couldn’t resist. Our mentality and approach to life has been influenced by this overwhelming uncertainty. We want to live for the moment, because we don’t know how many we will get together. The game was of course amazing, with a 25 point second half comeback and an atmosphere that was surreal. It was an unforgettable night, but the best part, was that for a few minutes we were completely distracted by something that wasn’t cancer. We got to jump up and down and scream and yell for the right reasons. We got to have fun without the feeling of associated sadness that has accompanied many our special moments because of the unspeakable implications. It made me appreciate how supportive she has been of me, taking on my rooting interest in sports because she cares about me, and she cares about what I care about so much that I am not sure who was more excited when they won the game in overtime. Her expression of equal parts disbelief and joy is something I will never forget, and I will be forever grateful that I got to share that moment with her. For all of the heart-wrenching moments in the past year, this was one of my most cherished.

Allow me to get on my soap box for a moment. I want everyone who cares about her to approach this that same way. She has always been someone who shows up for her friends and family. When people need her, she is always there, usually at the expense of her own personal benefit. Because of everything that has happened, I want people to do the same for her, even if she would never expect that of you on her own. I want people to make the effort that she deserves and show her how much you care about her and that you are pulling for her to make it through. She will never ask, but she shouldn’t have to. Treat her like she has always treated you, I promise, you will never regret this decision. So many of you have done this, many of you so unexpectedly. People you would never expect show such incredible support that it is truly humbling.

Thank you to her cousin’s DJ and Tracy for coming to LA to meet us and take her to Universal Studios. Thank you to her cousin Alex for flying down from New York and spending time with her during Thanksgiving. Thank you to the Jurgens clan for flying out during Christmas and allowing her to see everyone and create memories in home she has created for our family. Thank you to her mom for dropping her life to come help us during scan week, Cam’s birthday and to attend the Super Bowl. Thank you to Mike and Melissa Santarcangelo for picking the boys up from school while we are in Houston visiting MDA to get second opinions on her treatment.


Thank you to everyone who has taken a moment in the last year to put her first. I know how much she loves you and appreciates you for this.

Sunday, February 19, 2017

Progression

So experiencing progression for the first time is as awful as you might think. It's stressful. It's scary. It all around just sucks. I had my quarterly scans on 2/7. Brain MRI came back with the all clear and then some. Only two of the three treated spots are visible on scans and both of those are down 1 mm in size from the November scan, making them 2 mm and 1 mm. Great freaking news. For the PET however - things are not as great. If you recall, in November there was some indeterminate activity going on in my liver and it required an MRI to confirm. The SUV on the scans was mildly over the background activity level (so not really "hot"), but 3 masses were seen. Also in November, the masses in my lung were pretty "hot" on the scan and the lymph nodes in my chest were luke-warm. So all around you could characterize my November PET as showing things starting to activate. Well this February scan confirmed that activity without question. Everything has increased in size and SUV - lung masses, lymph node masses and liver masses. The existing lung mets increased in size minimally (fractions of a centimeter), but are showing at about a 9 to 10 SUV on the scan "hotness" meter. The lymph nodes are behaving similarly. My liver however - the 2 masses in there increased 1 cm each in 3 months and also went from low SUV uptake of about 2 or so in November to a 9 in uptake for this scan. They seem to be acting differently than the other known sites. Somewhat parallel in behavior is also a new lung met about 2 cm in size but showing in the low 2's right now. My guess is it's behaving like the liver mets did in November - letting itself be known, but not fully activated yet.

So what does all of this mean? It means it's clear that I've experienced what's known as "progression" on my current therapy. The disease has progressed, as they would say clinically, and is no longer responsive to my current treatment. What does it mean for me? It means a lot of things. Overall, am I in a worst spot than I was last year? You could argue no - that this is definitely better than a lesion threatening to collapse my vertebrae and take out my spinal cord, block my airway or break my hip. Yeah, I'm better off than that, right now. It also means that I need to now change therapy though.

Having gone through my first line of treatment (as it's called) in such a way that I have extremely minimal side effects, it is very, very easy to get lulled into "normal." I feel like me, I look like me, I'm behaving for the most part -- like me. It's very easy to forget that I'm "in treatment" and will be for the foreseeable future, when I feel like I do right now. There were hours, at the very least, some days these past few months where I actually didn't think about being in treatment. Hence, it was very hard to hear my oncologist tell me she thinks I need to switch to chemotherapy as my second line of treatment. And not just any chemotherapy, but Taxol specifically, for 4-6 months. It's IV chemo - it's what people automatically think about when they hear "chemo" - it's losing my hair, having a port placed in my chest (that will more than likely stay in my chest since I'm in treatment for the foreseeable future) and going in once a week for a few hours to be infused with treatment.

My doc gave me an alternative option for chemo called Xeloda. It's an oral chemo, but still chemo, but it doesn't cause hair loss. It causes it's own issues ranging from nothing, to hand-foot syndrome (different from hand-foot-mouth), tummy troubles, nausea, etc ... It's hard to know how you'll tolerate it until you're on the medication. Xeloda also crosses the blood-brain barrier, which is a positive for me as well.

The way she sees it - she is trying to protect my liver as quickly and effectively as possible. If my liver is compromised, it narrows my treatment options tremendously because the majority of medications are processed through the liver. If my liver can't handle it - then I'm in serious trouble. She wants to "wipe out" what's going on in there, and then once things show they're clear, she'll switch me to a maintenance therapy, like a different anti-hormone therapy perhaps.

The way I see it - it's certainly appealing to think that I could attain the highly sought-after "NED" - no evidence of disease. It's what every single person with cancer is seeking. The holy grail - if even for a couple months between scans. No evidence of disease in your body as detectable by scans. It's the closest anyone will get to cured. It's the highest hope.

But what if it doesn't wipe it out? What if it doesn't work? What if I have progression on chemo? Then what? It means my whole life is about to shift even more dramatically - that's what. It means their "most effective chemo" isn't effective for me.

And that's not a door I'm ready to open. A possibility I'm just not ready to acknowledge. Especially not when I feel like I do right now.

So needless to say - it's been a week and a half of research and worry and denial and stress and lengthy conversations with my doctor and Mike and my mom and my cousins and my friends and making deals with myself like - if I have to do taxol, then I'm not getting a port. I'm going to do it with an IV in my arm, that way, if it works like she hopes it will, then I'll have another year or two or more at least of life without a port. Deals like that - where I'm trying to have some bit of control over the situation in any way possible. I tell myself they can always put a port in later if my veins can't handle it or if it becomes an issue. What I tuck away is the likelihood that the vein in my left arm will probably blow more than once and be quite painful - not to mention the possibility for irritation from the pre-meds and the chemo they're infusing. And I can't really alternate arms because I've had lymph nodes removed from my right side and they try not to poke or prod the right side for fear of causing lymphedema. I tuck away the thought of indefinite chemo - if 4-6 months isn't enough to clear it all out - if it just causes stability - then I'm on chemo for a long time - years potentially. And granted stable is amazing. I can live a long life with things as they are right now if the disease stays stable. I can see my boys grow up and even see grandchildren - if the disease stays stable ... and of course I don't get hit by a bus or something. But it's a big pill to swallow. Once a week for three weeks, one week off, and bald - indefinitely ... or until my body can't handle the toxicity any longer.

The lack of control in this situation is maddening. I'm grasping at whatever I can, to do what I can, to hold on to as much normalcy as possible for me - for Mike - for my boys.

I also don't know if I'm ready to give up the anti-hormone therapy tries just yet either. Biopsies say they're still receptive, but activity in my liver and lung suggest otherwise. There's just so much to process - I don't know which way to go, which path to take, which cliff to step off of ... because yes ... every decision in this process feels like a cliff ... leap of faith ... after leap of faith ... after leap of faith.

We head to MD Anderson on Thursday for a second opinion from my oncologist there. After that, I should be able to come to a decision on which way I want to go. On the table right now - options that I think I can come to grips with mentally and emotionally - are 1) Xeloda, 2) a clinical trial if there's one that makes sense and believe it or not 3) taxol ... and yes, even the port.

Camden just turned 4 on 2/15. We celebrated with an amazing dinosaur cake, cookies and piƱata with his classmates. We went to a family and friend dinner as well. He's growing so much, so fast and it's amazing to watch. He is bold and curious and so, so friendly. He's so happy and fearless and optimistic all the time. And he never stops talking lol. Nicholas is turning into a little boy right before our eyes - mimicking our gestures and getting out little jumbles of words and phrases. He's saying "Haley, no!" quite distinctly on a daily basis as well. He's also so happy all the time. I would do anything to see them grow up ... to see them become amazing, good-hearted people ... to see them grow into their beautiful spirits. And if that means chemo indefinitely ... so be it. It's a small price to pay.






Thursday, January 19, 2017

1 year

I feel like the universe is trying to tell me something. Maybe it's just scan time is upon me and it's making me seriously nutzo. My anxiety is on the rise since we got back from L.A. I had a panic attack the day after we got home. Crying, rocking myself, sore muscles type panic attack. Then last night during dinner my chest gets tight, my breath gets wheezy - I manage to get through the boys' bedtime routines without biting anyone's head off (too much), only to be unable to calm down enough to sleep during my own bedtime. I woke up and feel fine today, but I felt fine yesterday morning too. The incessant, nagging, worrying voice in my head just gets louder and louder now that scans are on the horizon again. Mind you - they're not even scheduled. I just know they're happening the week of 2/6 because I have my regular, monthly doctor visits scheduled for 2/10. I'm 3 weeks out from scans and this icky worry is already pissing me off. Then, on the drive home from drop-off this morning, I'm deep breathing and trying to calm myself down and can't even focus enough to answer Mike's question about what do I want to do for dinner tonight. I'm trying to let it go for now -- control only what I can control, right now. I'm holding on to the fact that things are, and have historically been, slow growing. Compared to some women who have a ki67 score (cell proliferation rate) in the 90th percentile, my 5-10% percentile brings me comfort in a small way. Consider the cancer lazy. I'll take that. Perhaps it's not overly ambitious either.

The liver issues are what's bringing me the most angst this time around I think. Because I already have lingering rib pain on the right side, anything I feel there this time I'm somehow correlating to the liver. And I already have arthritic-type pain in my right shoulder, so anytime I feel something there, I question it - is it new? is it old? Because - as I've so kindly educated myself - liver issues can defer pain into the right shoulder. Isn't that nice that I know that? s.m.d.h. seriously.

And then - I log into work today, open up the website and THE FIRST THING I see when it loads is a new page titled "small-cells-big-changes" ... like seriously?!?! What.the.fuck. I quit. I had to start this post or I was going to put a hole in the wall with my head. Now ok - I get it. Pure coincidence. But is it? Yes, these "small cells" are related to technology and not biology. But of course my worry voice - my dark passenger, if you will - goes straight to OMG OMG OMG OMG O-M-GAWD. And then the inherent optimist in me goes, OOH! Maybe it's a sign they're ALL GONE! And she does a little dance.

And now you understand why I'm seriously going nuts over here.

So let's talk about something else. Let's talk about 2016 and how seriously crazy it is that it's been 1 year since this damn diagnosis. 1/3 of what statistics say is supposed to be the life expectancy. ONE-THIRD. Do you know how much that is? It's a lot. Do I believe it applies to me? Fuck no. Call it denial - I don't care. That isn't how it's going to be. I have babies to raise and a husband to make crazy and new home to make. I have family that I love SO MUCH.

Mike and I had a conversation the other night. A hard conversation. His perspective is that everyone around me should do everything they can to make my life easier, because the weight I bear is hand-over-fist greater than the weight anyone around me is carrying. And because of that - deference and accommodation for the situation is deserved. He's trying to protect me and control what he can since he can't control what's happening with me. I told him I don't want special treatment. I don't want to be treated like anything is different because then, to me, it means others accept that this is happening - that others accept that I'm one-third of the way through - and I don't want that. I don't want people to look at me - to treat me - with one foot in the ground -- to put a countdown over my head. I don't accept it and I don't want anyone else to either. But he's so rational. He says he doesn't accept it, but he's not going to ignore it either. He said it's this cloud that's following us. And maybe it decides to forever stay just following, maybe sometimes sprinkling, but never over us - drowning us - but he's not going to pretend that it isn't there. He's going to make damn sure that everyone understands that it's there and that they should also be aware and act accordingly. We don't know how many holidays I'm going to have. We don't know how many winters and springs and summers ... how many anythings I'm going to have. He wants what I want to be first and heavily weighted. And while I think it would be kind of amazing to be the center of our universe, I don't want to impact anyone else's lives more than this is already. So of course I cried a lot during this conversation. I can lie to myself and deny to myself and accept what I want to be true for myself day-in and day-out ... but not to Mike. So it's a good thing he believes more in me, than in statistics. (I only pulled Cs in that class anyway. Who needs statistics.)

So it's a new year and while 2016 was fucking hard - it's over. I'll add it to my collection of life and I'm extremely grateful I get to, shitty parts and all. I've never been one for resolutions in the past, but for 2017 I've got some and I'm kind of passionate about trying to keep them. (did you catch that ... "trying" to keep them.) I make no promises other than I promise to try. Daily meditation and yoga is my first one, in any form. Some days I've accomplished this in 30 seconds, at the same time, as I'm contorted into some crazy position trying to grab a toy under a piece of furniture meditating to calm down and not flip out because the same kid that put it there is now climbing on me and pulling my hair simultaneously. Other days sex covers it - as that is both yoga and meditation as well. Ideally however, it would be at least 30 minutes on the mat followed by 30 minutes of breathing and mindful meditation. Ideally ... but baby steps. My second resolution is that Mike and I do one new thing each month. (Get your mind out of the gutter.) To accomplish this, monthly I will be scouring Groupon to find new and interesting things to try as a couple or as a family. Stay tuned because this should be a fun resolution to follow.

For January, I guess we can accept dressing up as our new thing for January. I don't know that Mike and I have ever dressed up in costume in the 11.5 years we've been together. At least, not that I can remember. While we were in L.A. his work had a conference that ended with a 70's themed party. We stuck to early 70s and went with tye-dye. It was fun and very out of the box for Mike. Additionally, while in LA, I managed to get some girl time with two of my beautiful and amazing cousins. I geeked out a bit at Harry Potter World and was greatly impressed with the look and feel they managed to pull off. I re-discovered my love for roller coasters as well.

2017 is off to a great start. Nicholas is one and walking everywhere, Camden is turning 4 in February, I'm turning 36 in March and Mike's 35 in April. We'll celebrate 7 years married, 12 years together in April as well. I'm hoping to vacation to Alaska or somewhere where we can catch a glimpse of the northern lights before spring is over (but this one might have to wait until the end of the year if the timing isn't right). Most of all, my sincerest hopes and prayers are that this year continues in this positive fashion and that looming scans validate the optimist in me and that she gets to do her happy dance. Overall however, my main resolution is to just live - in every sense of the word.