Goodbye 2014

These first holidays without C have been just as difficult as anticipated, more for me than the girls.  They have been so happily distracted by travel, family, friends, and love that I don't think it has truly registered just how devastating these firsts have been.  For this I am thankful.  I have spent the time since C's birthday preparing myself and them for what the holidays would bring, I have a feeling once we are back home in familiar surroundings and less distraction, K and possibly H will find their feelings and we will have to process through it all then.

For me, it has been so difficult to see the happy pictures that flood Facebook, Mommy and Daddy and the kids happily posed in front of their trees in wonderfully coordinated outfits.  That used to be us.  Jumping out of bed in the middle of the night with the realization we forgot to move the elf.  That used to be us.  Wrapping all the presents and wondering how the girls would react in the moment of opening their gifts.  That used to be us.  Planning the day's activities to see that joy in the girls' eyes.  That used to be us.  I have carried on in trying to do what I can for the girls, trying not to mention C every five minutes like I want to, but encouraging his name to be spoken when it comes up organically.  I have caught K looking at some of the pictures that line his Mother's wall, especially the ones with her and C, but she quickly moves on if I try to talk with her about them.  Talking about past Christmases has been difficult, mostly because I can't speak of them without the words getting caught in my throat as I hold back my tears. 

Perpetually feeling caught in the middle between wanting to celebrate and be happy and fully loved by those who care so much for us and wanting to run and hide and pretend the holidays don't exist.  Watching everyone around us, moving forward wrapped up in their joy of the holidays, still causes me to feel as though I am still in the eye of the tornado.  Watching everyone's lives keeping moving, sometimes joyfully, sometimes not, while mine still feels frozen in time..... still picking up pieces of my heart is so intensely painful.  I had that fun, that love, that joy.... and knowing that there will be a time where I find that again, but longing for the memories of the last decade doesn't allow for it now.  I miss it and I want it back, and there is absolutely nothing I can do to fix that.

And in the middle of all of this internal holiday madness and chaos, two of my favorite ladies became engaged to their loves with weddings planned for this upcoming year.  And since both of them know my heart, and know that I am truly happy for them.... I can be brutally honest in admitting how much the news of their joy stung.  I have spent a lot of time trying to figure out what exactly hurt so much.  Part of it is jealousy, I miss having my other half, that safe place to fall.... the shelter to huddle under when everything else was painful and confusing.  C was my rock and I miss him more than ever.  But that isn't quite the root of the sting.  Part of it is wistfulness, I remember when C proposed, I remember planning our wedding, even those good memories have a harsh sting to my heart.   I know that happiness he would have had for our families, especially for his sister.  I can imagine conversations that we would have had..... from joking about making sure they included a safety pin in their wedding day prep list lest one of their dresses break like my wedding dress did moments before walking down the isle to looking forward to preparing the girls to be a part of those weddings and hoping that the weddings would happen on a day they are feeling particularly cooperative.  But that isn't it..... those conversations only appear in my minds eye, even though I can still so clearly hear his voice.

The root of this sting is the fact that with these events, I will no longer be able to sit in the eye of the storm and watch the world go by.... whether I am ready or not, this year will bring new memories, new laughter, new joy that C will not be here for.  He will not be sitting next to me on those days, he will not be helping me with the girls.... our lives will continue to move forward without him.  We will join the storm of life with it's new ups and downs, creating a new life for ourselves.  And I don't know if I am ready for that as I continue spending my quiet moments praying that I wake up from this nightmare, that I open my eyes and see his face laying on the pillow next to mine.

So I say goodbye to the most painful year of my life and hope that as we move into this next one, my heart can open to the possibility that joy and laughter can reside next to the grief and sadness.  That the new memories will not replace the old, and the fear of that will fade as time marches forward.

Bookends

This Wednesday, the 26th of November, will mark six months since C died and also, two years since the original diagnosis. Add this onto the cusp of Thanksgiving, and the bonus of the only memories that seem to surface regularly are the painful ones from the last two years and this has been a tremendously difficult season so far.

I remember vividly the look on his face when he brought home the diagnosis two years ago..... if I focus on it too long, I can still feel the ice water run through my veins in reaction to the news, the same ice water that I felt the moment I realized I had watched him take his last breath. Almost exactly a year ago, we were devastated once more by the news that we could not travel to Texas for Thanksgiving after learning that the cancer had progressed to his lungs. Beginning the next phase of treatment that, now in retrospect, was the start of a very quick downhill slide that would have him leave our family far sooner than we had hoped. The devastating pain that I feel reliving these truths moment after moment are nothing that words can accurately capture. The reemergence of these memories and feeling the weight of them at unexpected times makes me feel like I will never move forward.

Having my brain constantly going does sometimes allow for some happier memories, but the pain of any of them at all still makes me feel like this gaping open wound will never heal. I finally went back into the church service in the last two weeks..... the first time I really spent any time in there since C's memorial service. I had to leave mid-sermon the first time, there was too much that I couldn't handle after also sitting through some very moving hymns. I went again this past Sunday and made it through the sermon, only to have to leave during the prayer at the end. When C and I would attend services together, this was the moment he always put his arm around me as we bowed our heads in prayer..... and his arm would stay around me for the last two songs. This past Sunday, at this same moment I felt so cold, and alone, and the pain of the memory hit me like a ton of bricks, I ran out of there once again.

The emotional toll this roller coaster takes....... I feel so crazy as I go from feeling so sad I can't get out of my own head, to getting through it and realizing I pushed through the hurt and that I am still standing, that I'm okay, just be knocked down by something as simple as changing the paint color our home in an attempt to move forward.......  I had the interior of our house completely repainted this week. As the primer went up and the paint color changed drastically, I sat on the phone with a friend of mine for hours, completely devastated, feeling like I had made the wrong choice and that I longed for the old color and the memories of C and two of our friends painting that room many years ago..... he had picked the color after completely vetoing my choice.... which did kind of look like battleship gray, he was right, not that I think I ever told him that...... I was newly pregnant with H (we hadn't told anyone yet) and I kept ducking out of the house to avoid paint fumes, attempting to be slick and not give away our secret to our friends. It's kind of funny the lengths I went to since we weren't sure if we were ready to tell, little memories of a happier time that seems so far away.

Now I am trying to focus on the realization that memories don't disappear just because you start to move forward, that changing the paint color doesn't change the memories and the fact that those memories will always exist, they just no longer have that visible reminder. And finding a way to come to terms with realizing that it's not the color I long for, it's the longing for the old life that it represented............

Happy Birthday Daddy

This past Thursday would have been C's 47th birthday.  I've been dreading his birthday for awhile now, knowing that it marks the start of the holiday season and what is sure to be an incredibly painful and rough two months for all of us.  I reflect on where we were this time in past years, looking for some peace and comfort in good memories that we made as a family and as a couple, but they are steeply overshadowed by the images from the last few months of his life.  As difficult as these few days have been, I want to try to focus on the blessings we were given.

We began C's birthday celebration with a friend bringing doughnuts and coffee.  This particular friend is an incredible ray of sunshine in our lives.  Her strong faith, upbeat personality, and her ability to be present in the moment make her one of the easiest people for me to talk to and I am very blessed with the love she and her family have for ours.  The girls and I then went to the airport to pick up C's sister..... I am thankful she was able to come up for these few days.  Our age and personalities being very similar, she gets where I am and supports me no matter where I sit with my grief.  She listens without judgement and goes out of her way to make my life easier, she was a very strong and comforting element to this rough couple of days.  I am incredibly blessed that my husband's family is truly my family as well.

The five of us then went a nearby restaurant that the girls picked.  C had never been there, but the girls were confidant that he would have liked it.  The meal went really well, anyone who dines out at restaurants with young children know just how quickly these things can go downhill, but we were able to enjoy that time together.  After lunch we went to pick up balloons for daddy, the girls each chose two and I grabbed a few extra just in case.  We got them home and finished our birthday cards to Daddy, attached them to the balloons and went outside to send them to heaven.  Just as we finished getting organized and went outside,  the rain that had been lurking all morning gave way to a hint of sunshine and we were able to release them without less desirable weather threatening our celebration.

The girls were so excited to send the balloons to Daddy, they watched the balloons float up and followed them until they couldn't see them anymore..... that was how we know that Daddy got them.  I am so blessed to have these girls, for as overwhelmed as I get, their innocence and faith bring me back from very painful places in my own heart.  K had a particularly rough day as well, again mirroring my feelings and actions in a less than flattering way.  The weight of it all has had her and I at odds again, but we moved quicker into a place of comfort for each other than we had previously.  I am so thankful for the counselors who are working with us to find our new path together.

November is a month where we focus on the things we are most thankful for.  I struggle with this for obvious reasons this year.   But seeing beyond my pain and taking moments to look at the world around me,  I am so incredibly thankful for the friends I have.  From those who drop everything in the middle of the day because I need an ear or a hike in the woods, friends who sacrifice their own sleep talking to me on the phone late at night because I can't, to those who text me funny jokes at random on the chance that I need a moment of levity.  I am thankful for family who don't let me drift too far into isolation and make sure I know just how loved I am.  I am thankful I am able to be home with the girls and focus on rebuilding all that has been shattered.  I am thankful for those who have traveled this road before me, who take the time to revisit the same wounds that are so fresh for me and help guide me through.  As I look back over the journey that C and I traveled together, I see the blessings that were given to us along the way....  I want to focus on them, but I know that for this year, it is an uphill battle that I feel I am loosing everyday.

Rough Days are Rough

Writing out our journey together throughout C's fight with cancer helped me process so much of what was going on at the time.  The feelings, the highs, the lows..... finding the words to turn them into my entries helped me make order of the chaos.  I think I need to continue this outlet.....


Moving into our second season without C, the numbness and shock have firmly worn off and made way for intense sadness and anger.... especially for both K and myself.  Trying to find our own ways to deal with the intense emotions that neither of us know what to do with, we constantly battle against ourselves and each other every day.  Not always the hallmark card of warmth and tenderness, a lot of our interactions are very intense and very raw, buffered by the tiniest string of restraint I can muster.  There are times where we yell instead of hug, scream instead of talk...... we are working together to change that pattern, but change doesn't come easy.

I have found that making myself as busy as possible with every single physical activity that crosses my path, any reason to not be in the house we shared and still trying to stay away from people has become the norm.  Being in groups of friends, even those who love us most is so hard.  Feeling like every time I enter a room, everyone has been talking about me and that all eyes are on me. What is she going to do? What is she going to say?  What do I say to her?  I have to say something, just try not to say something that will make her cry...... are just a few of the thoughts I feel floating by me as I walk around, trying to move through life.  Even around those who don't know me, I feel like there is a giant neon sign over my head "widow".  Moving quickly through crowded rooms, I have become a master at the disappearing act.  I have reduced my inner circle of friends to an insanely small number and even only a portion of those will I talk to honestly.  I have found that a lot of my words have a bite that other people can't handle or fear taking on, so I tend to keep things to myself. For those who really want to know, there is nothing you can say that will "make" me cry, most of the time I am on the verge of tears anyway, and it may not be anything you say that triggers them.  I remember my husband's name, it doesn't hurt to hear it.  He had cancer, I know that.  It was aggressive, he was so young, I am so young, the girls are so young....... I know these things too.  There are many things that are said that throw me into a rage, it is extremely easy to do lately, but you won't know that..... that is what the punching bag in my garage is for.

K struggles with feelings so intense and no good way to express them, except for screaming, hitting and raging at anyone in her path.  The moments where it hits her are, like myself, unpredictable.  Her anger covering up the most horrible sadness of a child who has lost a parent and feels alone.  At her most recent counseling session her declaration of "I want to kiss daddy, I want to hug daddy.... but I can't" sums up the pain in her heart pretty well.  Unfortunately it tends to manifest itself most often in striking out and hitting me where it hurts.... "you are the meanest mommy" "you are the worst mommy ever" "I wish you weren't my mommy"..... I struggle to find calm and patience to see through her words and find the root of the pain and address that rather than the words being thrown at me in the heat of the moment.  K's fixation on feeling lied to, that we didn't confirm her fear that daddy was going to die, that she knew it was going to happen but nobody listened to her has made her keenly aware of and intolerant of lies whether they are purposeful or not.  Her worst times are like a mirror, as she and I are exactly the same.  Anything to avoid feeling the hurt and the pain that is unrelenting, not really worrying about collateral damage.  She is starting to open up and come to me in these times of pain, trying to break the cycle we have created together.

H has been very factual in how she has processed everything that has happened, she has wanted to know everything from where was the cancer located in daddy's body?  how did it move to the lungs? were you there when daddy died?  to did you see him go to heaven?  Her faith that daddy is finally not hurting in Heaven and that God is helping him not miss us so much is both comforting and horribly sad for myself to hear in her quiet, purposeful voice.  As daddy's birthday approaches next week, she is definitely starting to feel the emotional aspect of everything and her pain at the upcoming holidays is more obvious.  The tears flow a little freer now with her remembering last year's Christmas and wondering if we can have a Christmas this year without daddy is hard for me to think about let alone reassure her about, though I do the best I can.

Baby T has continued to be the source of joy and blissful ignorance, comedic relief for us all.  She still points at pictures of daddy and recognizes him...... I hope that his image is always one she recognizes.  This summer she started demanding bedtime stories, and as I rock with her at night reading the same books that C used to read to the older two my mind often drifts and I can still hear his voice reading them. One day I will be thankful for this...... one day.

Moments

It's been one month today, and my heart hurts more than words can describe.  Behind a carefully crafted mask that I wear everyday, I hide, refusing to let my guard down for a second for fear of loosing control.  There is no good answer for how I feel, the surface feelings change so rapidly from 'fine' to fear to faith to anger...... underneath is the most incredible sadness, a piece of me is missing.

The girls and I are constantly on the go, and people seem to think this is strong, but truthfully I am escaping my thoughts, my house, responsibilities that I don't want to have.  Buying plane tickets, realizing that I am not purchasing for a family of five, but of four.  My wedding ring that holds C's ring on my finger, I can't take them off, but looking at them brings the tears.  Being at a graduation party for a friend's daughter and realizing I don't have my phone out and ready..... that I am no longer on call.  One of my closest friends lives directly across from the hospital C never left and a few streets over from the Cancer Center we spent so much time at, the detours we have discovered to avoid those buildings to get to and leave her home adds ridiculous amounts of driving time..... but I just can't drive by them anymore.  Meeting with lawyers and advisors, learning that as C took care of us in life, he had planned well for taking care of us now.

Watching the girls overwhelms me with sadness.  Yes, I can see him through facial expressions, mannerisms, sometimes in a phrase they will use..... one day I am sure it will bring comfort and maybe a smile, but today it is painful.  Every first that Baby T has, and there are still plenty, are beyond bittersweet.  I desperately want to text him pictures, send him a quick excited note, talk about it at the end of the day after we have wrangled them into bed, share it all with him..... but I can't.  

I know he is in heaven watching us and watching over us and is here with us..... but this doesn't bring much comfort right now....... the truth is I am selfish, I want him here, with me, in the flesh.  I look over at his chair that is now empty and all I want is my best friend back.

Coda

I have been replaying the events of Sunday night and Monday in a seemingly never ending movie loop in my mind.  Sometimes in incredibly clear focus other times in a blur of sheer emotional turmoil.  In an effort to release the pain and make sense of the senseless, I have decided to write down the events.  I have added and deleted more times than I care to admit as I debated often on what parts I can share and which are still too raw, painful, intimate.


I returned to the hospital that Sunday night, I was worried as he had had a rough morning and his pulse had been racing most of the day.  His mom and sister went to spend some time with him in the late afternoon as his sister was leaving the next morning to return to Texas, I knew how emotional it would be for C.  It has increasingly tugged on his heart that he was far from his family and he expressed often the idea of moving back.  So when I went to his room I checked the monitors outside, his pulse was much lower than it had been and his blood oxygen was decently high.  I remember being so thankful and relieved and looked forward to finally shaving his face like we had been trying to do for a few days, but one thing or another had prevented that from happening.  As I went into his room, I wasn't sure that night would work either.

His breathing was heavy and labored, more so than it had been throughout the past week.  He had taken to typing messages instead of talking.  In this I am sad, but thankful..... all our last conversations are mine to look over when I want, without the blur of emotional memory.  He was concerned and we discussed moving him to the BiPap machine, a heavier duty breathing machine than the High Flow he was currently on.  We decided, with the doctor's advice that we would watch and wait since his numbers were okay.  As we got ready to go to sleep, Clint admitted he was scared and asked to hold my hand,  so as we fell asleep that night we did so holding hands.  When I woke up two hours later I looked at the monitor, I am not sure what woke me but as I looked up his numbers had gone crazy again, his breathing was still labored, and he just couldn't catch his breath.  We decided to move him to the BiPap machine and after getting it situated on his face, he and I went back to holding hands and fell back asleep.

We woke up to the doctor standing there Monday morning...... still holding hands...... he spoke with us about the machine and how C was doing with it.  I went outside to speak with him further as I had taken to doing, the doctors weren't very optimistic and while C knew that, he didn't need to hear all the numbers and details.  While I was outside his room, I received a text from him.  His breathing had again become labored, even on the machine...... C felt like this was it, he was in pain, exhausted and scared.  I immediately made arrangements to get the girls there, as C requested, so that he could give them one last hug, though he wasn't sure he could hold on long enough to do so.  I then called his sister who was en route to the airport to head home to let her know of the turn of events.  She and C's mom decided to turn around and come back to the hospital.

As I made arrangements to increase C's pain medicine, he was texting me furiously trying to get out the thoughts before he couldn't anymore..... maybe one day I will share those, but not today..... let's just say, I know exactly how much he loved me and our girls.  The girls arrived at the hospital, gave their daddy hugs, trying to be careful not to wake him.  A wonderful friend took them home with her and treated them to a day of fun, not knowing what that day was sure to bring.

That afternoon, shortly after C's brother also made it to the hospital, surrounded by family and our love, he took his last breath.  I was still holding his hand.



There is much, much more to that day, I have to admit that I struggle with much that went on.  I know in my heart that all decisions made were the ones he wanted, I know that I loved him through the fear and the pain, and I know he fought to not leave us........

A Painful Road

As I sit here in C's room watching his chest rise and fall as he sleeps, staring at monitors watching his numbers dance around, I look back over the last week and wonder what happened?  It has been such a blur of stress, sadness, fear, frustration, hope, faith...... so much in such a short period of time.  His body is fighting an incredibly difficult battle and the doctors have marked it a very dire situation.  His lungs are occupied by so much that doesn't belong there that the oxygen that does struggles to find room.  All of this trauma is very taxing on his heart, which is struggling to compensate for the lungs.  Every movement, be it attempting to stand, coughing, or just talking sends his body into a tail spin.  Add that to the "normal" pains he has on a regular basis that become exacerbated from the lack of being able to adjust to a more comfortable position, and it is a real mess.  The doctors are doing everything they know how to do to give his body a chance to fight and heal itself, but we also get asked difficult questions about what actions they are to take if everything turns downward.  I have no idea what today will look like, I haven't even contemplated tomorrow, any further than that I don't have any clue.

I have kept a near constant bedside vigil, terrified of leaving his side as if I have any control in this situation, as if my presence changes anything that C's body is going through.  I take breaks to allow others the chance to spend time with him, but spend the entire time I am away nauseaus that I am not there with him.  I talk to the doctors and ask questions, speak for C when he struggles, put restrictions on friends who come for visits..... everything that I can do, but I wish I had the knowledge to fix it so we could just go back to before this whole cancer mess started and live our lives together, the way we had always planned.  

I have barely seen my girls this week, we have wonderful family working overtime filling the void of both Mommy and Daddy's absence.  It breaks my heart though that I am not there to laugh with them, comfort them, talk to them..... just be with them.  We've brought them up for visits, but those have to stay short and sweet when all of them are in tow.  K, our 6 year old, came for a one on one visit with daddy towards the end of this week.  She loved seeing Daddy, showing off her dress and wanting a picture with him...... she was excited to be here and have alone time with him.  During her visit, I had her leave the room while the doctors were in speaking with him and she and I sat at the nurses station near the monitors that are set up outside of his door.  She began asking questions about the heart rate and the squiggly marks that flowed by.  She noticed that Daddy's heart rate was faster than that of the patient's monitor next to Daddy's.  We talked about what a heart rate is and that Daddy's is faster since the number is higher.  I explained to her that her heart rate got faster too when she runs around in her classes and at the playground...... she then pointed out that it isn't the same since he is resting in bed.  I wasn't sure what to say, and even less sure when after she took a few moments to think about it, looked up with tears starting in the corners of her eyes and asked "Is Daddy going to die?".  

My heart hit the floor and I haven't been able to pick it up since.

Oxygen Masks

The doctors are still conflicted on what exactly happened on Friday.  Was it an extreme reaction to the infusion? Is there pneumonia?  Are the tumors blocking one of the lobes and trapping fluid taking away a good deal of lung function?  A combination, or something else they haven't considered yet?  Either way, we have spent the majority of the weekend in tears attempting to get our ducks in a row as the doctors kept asking about advance directives and breathing tubes.  C and I both thought that this was it, that he wouldn't make it.

Fortunately over the last 48 hours or so, his breathing has gotten easier, and his meds have been changed to go after every possibility.  A new antibiotic to do double duty on the sepsis and pneumonia.  Steroids to reduce the inflammation.  A cough medicine to ease his coughing.  As long as he stays in bed, he is stable and comfortable.  If he gets up or moves around too much, his blood oxygen drops, his pulse races, his breathing gets strained, and usually triggers a coughing fit.  He is on oxygen around the clock with regular breathing treatments.

We have been given a glimmer of hope.  They want to send a sample from his lung biopsy in November to a lab for a molecular study, in the hope that more detailed info could lead to a treatment option that hasn't been considered.  The samples, once sent, will take about two weeks to come back.  I am hoping that this detail, whether through our doctor or NIH, will find a new weapon for us to fight with.

I am asked constantly how I am doing through all of this.  My answers have ranged from "fine" to "scared but hanging in" to incoherent responses of fear and sadness.  I feel like a vase that has been dropped, breaking into hundreds of pieces..... then picked up, taped together with scotch tape and put back on the shelf.  Looking pretty and functional, but at the same time being anything but.   I feel like I am an imposter, like a child putting on grown up clothes in their parent's closet, like I am not equipped to handle all that is being thrown at us at the same time.  I feel like I can hold it together when discussing what is going on, I can use the medical jargon, be concise and specific.... then when asked about the girls and I can't hold it together as easily.

Instead of succumbing to this chaos and breaking all the way, I am attempting to put on my own oxygen mask.  After we got the news last Thursday from C's oncologist, a friend contacted me with a list of programs for caregivers.  One of those programs was "How to Help Your Children Cope with a Parent's Cancer".  I hate admitting I need help, that I can't do it all, that it don't have the right answer to every question..... but C and I decided I need to do this, for myself, for him, for the girls.  I don't blog often about my faith, but I do believe that He provides and is presenting this opportunity, I need to take this lifeline and embrace what comes from it.  It is hard knowing I will be 45min away if something should happen, makes me ill at the thought.  But we are blessed that C's mom has been able to make a trip up here from Texas and will be able to sit with him tonight while I am gone.

When It Rains......

After the many tears and fears that we shared over our meeting with C's doctor, we did our best to rebound.  C and I began to list our options and started by sending this week's scans to the team that treated us at NIH.  Many friends have reached out with various offers of help and suggestions, we waded slowly through the avalanche of love, ideas, and support.  We were looking forward to the weekend when we could take the time we needed to process it all.

The bloodwork they had taken had showed a dramatic drop in C's red blood cells, so we took him back yesterday for a transfusion.  He has had so many in the last few months, it feels very routine.  A very slow process, each unit takes about 2.5 hours.  We decided that when he was done I would pick him up and we would take the girls out for ice cream.

When we came to pick him up, I had to bring the entourage in with me as I needed to deliver the antibiotics he was due for.  The lovely woman at the front desk watched the three ladies as I went back into the treatment area and set up his antibiotic regimen.  I went back out while Clint administered it to himself and we waited for him to come out.  Overall the girls do really well in this waiting room, understanding that a lot of people are very sick and don't feel real well.  I was ill prepared this time though, no snacks or drinks as we were only going to be 15min..... which they complained bitterly about.  Fortunately the older two found their way to the puzzle table and began trying to fit pieces together while we waited.  Daddy finally came out and the girls rushed to him excited that Daddy was done and eagerly anticipating ice cream.

As I looked up and focused on his face, my heart dropped.  There are just certain facial expressions that C makes, that signal immediately to me that something is wrong.  He came over to where I was sitting and sat down.  He couldn't breathe, he laboredly asked me to check the paper work from the transfusion and sure enough that was one of the emergency symptoms.  I ran to get the nurse, telling everyone who looked official on my way.  By the time I returned with my own group of nurses, there was a group around him.  His oncologist and his partner came out, trying to assess what was going on.  I think someone grabbed Baby T out of the way, or was that me?  They got him started on oxygen and called 911, then decided to wheel him back to a room while we waited for more help to arrive.

I stood there in the waiting room, torn completely in half.  I desperately wanted to follow him, but needed to check on the girls.  What had they seen?  Were they upset?  What was I going to say?  Two of the nurses came over, one holding Baby T and said there was an ice cream truck outside and asked if they could take them out there and let them have some ice cream.  I will forever be grateful for those ladies, I was such a mess I didn't know who to take care of first.  But they made that decision for me, took that off my shoulders and I rushed back to C.

EMS arrived about the same time and started him on a heavier duty oxygen mask, C's breathing started to relax.  They asked a million questions, then started to strap him to the gurney.  It then occurred to me that they were about to wheel him through  the waiting room, and I went into a panic thinking that if the girls were inside, they would see this.  I went tearing out like a crazy person, looked everywhere and didn't see them...... they wheeled C through and on top of wondering where they were, I was so relieved they weren't seeing this.  One of the nurses took me outside and the girls, in a completely different world, were sitting on the curb enjoying their ice cream outside.

I took them to a friend's house who lives literally down the street, and went to find him at the ER.  They made me wait to see him, those few minutes was excruciating.  I finally got back there after they had gotten him mostly stable.  After many hours and several setbacks he was sent up to a room to continue his breathing treatments.   We are still waiting on various tests to figure out exactly what is going on, one of the scans has shown pneumonia complicating the situation.

Catching Up, Part 2

Shortly after C came home from the hospital, the hemoptysis (the coughing, bleeding fits) began again.  In short bursts, usually first thing in the morning, occasionally at night.  Maybe once a day or every other day.  We were fairly laid back about going to the ER, they weren't the same dramatic events that had shown up in November.  When we did go, his blood counts were usually fine, lab work came back normal, and chest X Rays didn't show anything of concern.

We started to wonder if it had to do with the sepsis, the treatment or the picc line.  He still didn't feel as though it was coming from his lungs and it was seemingly connected to some sinus issues he has been dealing with as well.  We became concerned that maybe they should do a bronchial scope, maybe there was something going on in his throat that they hadn't caught because they were focused on other things.  

This week, after getting the CT scan of the lungs that our doctor had ordered, we went to the ER once again.  C had had a pretty rough hemoptysis event the night before and had adopted a wheeze when he breathed.  He wasn't in pain, just an obvious change from the "normal" events.  We presented the disc from our scan to help the doctor get a quicker picture of what was going on.  He ordered all the normal tests and called the oncologist to go over them.  As we waited we got an unsettled feeling as the doctor popped in and out asking questions.  They cut us loose due to everything being "normal", but mentioned that it looked like the tumors in the lungs had grown and that we should follow up with our oncologist.

Today we had that appointment.

After reviewing the scans with us and doing an exam, he informed us that the cancer in his lungs was indeed growing despite treatment.  The tumors have become treatment resistant and that there are no further treatment options he can offer us.  He is encouraging us to go explore experimental treatment protocols, such as those we have been through with NIH.

After everything that has been thrown at us in the last month, I had hoped that there would be better news, another round of chemo, another treatment of some kind...... not nothing.

Catching Up, Part 1

The aftermath of finding the cancer in C's brain, for a short while, was remarkably uneventful.  I think it helped that when the doctors came in with the news there was already a plan in place, everything moved quickly and his headaches, double vision and dizziness soon dissipated.  Our friends and family have rallied around us helping with childcare and food delivery, making everything less stressful in so many ways.  Then halfway through radiation treatment, C spiked a high fever.

 We rushed once again to the ER and after a long series of tests found that C had sepsis, a blood infection.  He was admitted as they worked to figure out which bacteria they needed to treat for and where he source of infection was.  They never quite figured out the latter for sure, since there were no obvious infection points they made the assumption that his port was either the primary or secondary source of infection and needed to be removed.  So they removed it and installed a Picc Line to administer the antibiotic through, which could be done at home.  So finally after a week of having to stay at the hospital he was finally released, feeling stronger than he had since before the brain symptoms started.

The home nurse came on discharge day to teach us how to use the picc line and how to administer the antibiotic, which I'll spare details but it is very involved and time consuming.  The girls have become quite comfortable playing nurse and assisting Daddy with his treatments, we felt that this new hurdle was past us and have been slowly looking at planning some sort of getaway for us and the girls once the treatment is over.  Family time has been completely lacking lately and sorely needed as we navigate these new developments.

A Devastating Blow

Finding the right words to explain the events of the last few weeks is proving insanely difficult, not wanting to commit the words to paper is not helping the cause either.  I am sure this will be more disjointed than I intend.......

The Friday following Round 5 I had to rush C to the emergency room.  He was unable to keep any food/drink down, got dehydrated and disoriented.  They gave him fluids and kept him over night for observation.  After returning home, he seemed to feel better and we went on about our week.  C felt good enough to go to the office, and did so a few times on his last recovery week (which he gets 2 between each chemo round).  Then the following weekend hit and everything fell apart.

Friday afternoon, after working from home most of the morning, C had exhausted himself and didn't feel quite right.   He began to get some of the same symptoms from that past weekend.  We figured it was some rebound sickness and decided to forgo the ER and see if we could just do better with fluids this time.  He was sick a few times during the night, and started to complain of a pounding headache.  This is important to note because in all the time I have known him, C has never had a headache.  It was Saturday morning when I started to get that uneasy feeling but decided to take K (and the entourage) to her riding lesson to let C rest. Some members of our wonderful church family were coming over to help with yard work that C hadn't been able to start yet and I figured since people would be at the house I could leave him.  When I returned, I learned that the guys were concerned as when C went to greet them, he had to sit back down on the stoop and was sick to his stomach.  I decided then that we would go back to the ER.  While there they gave more fluids, and did a chest x-ray, and found that his RBC counts were a little low, but nothing else explained his symptoms.  He offered to do a brain scan since we mentioned the headaches, but sounded like it wasn't necessary and C opted not to have one.  In retrospect, that was a mistake.

Monday I took him to his doctor's appointment/ Round 6 chemo, the doctor shared my concern over the headaches and promptly ordered a brain scan which we were able to get scheduled for Tuesday afternoon.  I left there more upset that my fears were shared with his doctor, I was hoping I was over reacting.  Unfortunately the events of the next 48 hours would prove those fears valid and we would have to change course once again.  I went to pick him up from chemo and found him laying on the floor by the entrance, apparently by choice.  His headache was so bad he decided laying down would be the best way to wait for me to arrive.  But when he went to get up, his body wouldn't cooperate.  Eventually we got him to a chair and he was then able to lean on me to get him into the car.  I should have gone back in and told the nurse, I should have forced him back to the ER, but he said he was just tired and wanted to go home and rest.  So we did.  Unfortunately that night on his way to the bathroom he couldn't find his balance and once again his legs wouldn't cooperate.  I called an ambulance, but by the time they arrived, C was back in his chair and felt better.  They left since C refused transport.

Tuesday he seemed fine, back to normal, like the events of the day before hadn't happened.  We went in for his chemo and I was hopeful that I was over reacting and maybe it was just a sinus headache and maybe the chemo just hit him harder the day before.  I reported all the previous days events to his doctor and even though C was feeling better he wished the scan had been scheduled the day before so we could know what is going on.  We went on in and got the scan that afternoon, and everything seemed back to normal.

Wednesday morning I took him to his third day of chemo, as we walked down the hall to check in, C's legs gave out again.  Fortunately there was a man nearby who saw it happen and helped me guide C to a chair as I struggled.  They brought over a wheelchair and took us into the doctor's office, after taking his vitals the nurse went to tell the doctor what had happened.  After what seemed like forever, the doctor came in with the radiation oncologist..... the scan had found tumors in his brain.

About 10 spots, two of significant size.... one in the forehead area and one in the back near the brain stem.  Neither of the two sizeable ones needed to be removed immediately as they weren't to the point of major damage.  But since there were so many spots we needed to forgo chemo for the moment and focus on these new tumors.  The new course of treatment is 3 weeks of daily whole brain radiation and steroids to help reduce the swelling.

A Long, Quiet Ride Home

We left NIH yesterday, together.  C and I sat in some of the longest, uncomfortable quiet I think we have ever experienced as a couple.  Neither of us sure what to say, not wanting to send the other into uncontrollable tears, but wanting to say something.  This week was supposed to be round 4 of our 6 round chemo trial, but Monday's scans were not what we were hoping for.

Just three weeks before, the CT scans showed dramatic improvement in the tumors in C's lungs, a 28% reduction after just two cycles of chemo.  We were so relieved and excited to finally have good news to share with our family and friends who are riding this roller coaster with us.  However, among that good news, we were told that two of the tumors, one in the lungs and one in the pelvis, appeared to grow since the baseline scan in December.  The doctor seemed sure that this was due to growth that occurred prior to starting treatment, growth that hadn't reduced to below baseline standards.  We were told they wanted to repeat the scan prior to chemo round 4 to confirm their suspicions.  With that we checked him in and proudly announced to our friends and family the good news.

This Monday we went in just like the time prior and got the repeat scan.  It was actually almost eerie how smooth everything flowed, on time without issue or incident.  We spent the time between scans perusing menus of local restaurants that we thought we'd try to sneak out to before his treatment started that night.

Then the doctor came in.

It turns out that while the lungs were stable and looking much better in response to the treatment, the tumor in the pelvis was a different story.  While the growth had slowed, it was still continuing to grow in spite of the chemo.  Since the lungs are stable, this has become a more urgent issue, requiring radiation.  As this is outside of the scope of the protocol, we are now off the study.   Appointments are scheduled for this week with our oncologist and radiation oncologist to decide the next steps.

I am trying desperately to be thankful this is being caught so early, one of the benefits of the many scans we have recieved .  I want to be hopeful that by being so proactive, we can eradicate this renegade tumor.  I want to be a comfort to my husband who has to struggle with new doubt, frustration, and fear.  I want to be strong for our children, to not take out my fears and anxiety out on them but instead teach by example on how to weather the uncertain.  I want to have faith that He is in control despite what feels like endless setbacks.  I really, really want to.........

Overdue Update

Time has stood still and sped by all at the same time.  The biopsy from C's lungs came back malignant setting our travel plans for Thanksgiving awry, our holidays became uncertain, and once again we were faced with the unknown.  We returned to NIH where C had just joined a study and learned that chemo would definitely be the next step which then disqualified him from that study.  In our meeting with the doctors we learned that prostate cancer can mutate in this way, especially in younger men with the disease.  A difficult pill to swallow and a very disappointing setback, but we were told that they would forward his file to a few other teams and maybe here would be another study we could look at.  On the way out we visited with a friend of ours who is an oncology nurse there, she explained a couple of things that we weren't clear on and offered more love and support.  By the time we went to my parent's house to pick up the girls, not 10 minutes away, we received a call from her that C's file had been placed on her desk as a possible participant in one of her studies.

The new study that we considered, then signed up for, is a phase 1 study focusing on the cancer in his lungs.  Phase 1 means that there is no control or experimental groups like the last study.  This one is testing the amount of the medicine that patients can stand with the hope that the tolerable amount will increase the benefit of the current standard chemotherapy.  As C is one of the later patients to enter the study, they are reasonably sure of the beneficial amount.  This combination of chemo, the standard of care and the experimental medicine, is given in 21 day rounds.  For the first four days he stays at the hospital while the treatment is administered, He then gets the next two weeks to recover before starting again.  The goal is to receive six total rounds, tonight is the eve of the third round.

Tomorrow we will go in and get a CT scan to look to see if there is any movement with the tumors in his lungs.  If there are no adverse effects we will continue for four more rounds.  We have no reason to believe the cancer in C's lungs is not responding, so hopefully they will be able to give us good news, that maybe it has shrunk by some measurable amount.  There is a certain amount of fear that we won't, but we can't focus on that possibility. 

We have been blessed by so many friends and family who have been by our side through this rough time.  Friends who have helped us with a food train to take meal planning off of our shoulders, including one friend who didn't let a "little" ice storm prevent her from delivering a meal to us..... sacrificing her own safety and sanity.  Those who have sent texts and notes, encouraging us through prayers, generous offers of time and energy to help with whatever they can.  Others who have dragged me out either for adult time away or play dates when I can't leave the girls, offering an escape from my own thoughts and fears.  I know I'll never fully be able to verbalize the amount of gratitude we have that so many have been placed in our path that have helped hold us up, but from the bottom of my heart thank you all for everything.