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.