25 May 2014

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.

19 May 2014

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.

17 May 2014

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.

15 May 2014

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.

13 May 2014

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.