Am I enough?

I think that is the question that is plaguing me right now. We have been through a life changing experience, both from different perspectives. I am anxious for life to feel "normal" again just so I can breathe like normal again. He feels like he has wasted his life, not spent enough time with the kids, not spent enough time with me. He wants everything to change.

What if he decides that I was a waste of his time? What if I am not enough for him, not enough fun, not spontaneous enough, not enough anything? What if I can't adapt to how he wants life to be? I don't even know how he wants life to be. I feel like I have always worried that he will decide I am not worth it. Even before the cancer. He has worked hard with school and work, making it possible for me to be home with my kids. I consider this a gift. But I know it has been hard on him. And I guess deep inside I feel that I am not worth it and I am just waiting for him to figure that out. What if this is what leads to him figuring that out? Then what?

And yet part of me feels like I am being ridiculous. I know he loves me. The problem is me. And although I have tried to fix that for years, a solution eludes me.

Elie Wiesel once said, "I write to understand as much as to be understood.”

It's been forever since I have been here but recent events have had me searching for an outlet, a place to sort my thoughts and feelings as much as to understand why I feel the way I do. It would also be nice to someday look back and see where I was now versus where I will be then. I wrote the following in an email to some friends of mine:

"On April 9th, which was a snowy Saturday, my husband went to my parents to work on the facing on their foundation. Neither of us wanted him to go but my dad was paying him and we needed the money so he went. In hindsight, that decision may have saved his life. He worked there for about 10 hours in the snow. He had to move an old wood pile that my dad was getting rid of (he bagged it so we could take it camping this summer). He came home later that night and life was normal. Or so we thought.

The next morning, we got up and took the kids to church. His brother was coming over for dinner so we came home and he worked on his Microbiology paper while I cleaned up the house a bit. He kept complaining that he was cold. That was a theme all night. Pretty soon he was wearing a sweatshirt, which he never does. He kept checking the thermostat in the house but it was set at 70. He was just really cold. We went to bed that night and I expected that he would be at work when I got up the next day. The kids had Spring Break and we were sleeping in. :) I remember the alarm going off and him sitting up in bed and just sitting there. I kept dozing back off but didn't ever hear his car leave. I figured I slept through it. So I went back to sleep and figured things were fine.

I got up around 9 when my 2 yr old woke me up. We came downstairs and found Jack asleep on the couch. He heard us come down and I asked him what had happened. He was running a fever and had been up all night vomitting. He was shivering from the fever. I convinced him to attempt to keep down some advil to help with the fever which he did. He got up and went upstairs to go to bed. He slept literally all day. We were worried because his brother was getting married on Thursday and we were afraid that we would all get sick for the wedding. But no one caught it.

That night, same thing. Vomiting and fever. The next day, April 12th, was my birthday. My kids got up early and made me pancakes and brought me breakfast in bed. He slept through it. I went and did my cub scouts activity. I woke him up around 4 pm to see if he was going to try to make it to class. He said he needed to see a doctor. I didn't question it which I normally do because I stress the co-pay. Money is always so tight for us. I think somewhere inside me, I knew he was really sick. He thought that he might have gotten Hantavirus from moving that wood pile. I figured that sounded possible and I knew that half of the people that get that don't survive it. And I had never seen him this sick before. So I asked my friend, Kylie, to watch our kids and took him to the Afterhours Clinic.

When we got there, I noticed that he looked yellow. Really yellow. We were put in a room and followed the normal doctors office procedures. The doctor came in and told us that Hantavirus doesn't get contracted as far North as we live and so it wouldn't be that. They did an influenza test which was negative. The doctor came in and said, "Good news! The influenza test is negative." My reply.... "how is that good news?"

They did urine and blood tests. His bilirubin was super high as was his glucose in his urine. They said they would call us the next day with the blood results. Then he asked us a bunch of questions about exposure to Hepatitis C or a history of Liver failure in his family. We both suspected when we left that it was something bad. He dropped into bed. I couldn't sleep. It was a long night of googling symptoms and not liking the stuff I found. But I discounted every Cancer link. I mean, we are in our 30s. Ya know?

The next morning was insane. It was the day before the wedding. We were supposed to get the kids' hair cut and prepare food for a huge rehearsal dinner later that night. I got up early and got ready so I could get all the things done I needed to do. Jack's boss called early as well to find out how he was doing. She said he left a message for her to call. He doesn't remember doing that. I told her we would keep her posted. The clinic opened at 9 am. At 9:03, his cell phone rang and he looked at it, didn't recognize the number and wasn't going to answer it. He was so tired. I told him he needed to, it might be the doctor. And it was. I watched his face carefully to see his reaction to what was being said. And the next 10 minutes went by in a frenzy. He needed something to write on which I scrambled for. He would write down an address and a time and then looked up and just looked at me, almost through me. I started pacing, listening to his side of the conversation. I knew from what he said and what I saw him write that we were seeing an Oncologist and that is never good news. My mind raced for a way to make it be wrong, searched for a way that we could fix it. He got off the phone and said that his bone marrow had stopped producing regular cells, that we needed to be at this appt later that day and that we couldn't tell his parents or his family because we couldn't ruin his brother's wedding day. Then he went back to sleep.

I couldn't eat. I couldn't hardly breathe. I called my SIL take my ingredients so she could prepare my food. I knew I had to tell her and swear her to secrecy if I wanted her to do it for me, which she did. I took my kids for a haircut which was not at all what I wanted to do. I got ahold of my mom to come stay with my kids. Her dad died of Cancer when she was 12. Her parents were so close to our ages that it just hit way too close to home. She didn't even have to say it. I knew exactly how this would be for her. My daughter is 12.

We went to the Oncology clinic. First thing I notice is that there are people in the other room sitting in chairs getting their treatment. They are all bald, no eyebrows, wearing hats and robes. It was too much reality for one moment and I almost threw up. What were we facing? How was our life going to change? How were we going to keep our house? My husband just barely graduated as a Registered Nurse 9 months before. He worked toward that goal for 7 yrs and finally achieved it and now this? My heart broke for him in that moment, it broke for what my kids were going to have to go through. And then there was fear. Profound fear. I fumbled with my insurance card and another co pay which I all of a sudden couldn't have cared less about. I filled out paperwork and showed him where to sign. Just being upright was a challenge for him at this point. They did more bloodwork and put us in a room. The nurse told us that when the doctor came in, they would have the results.

We waited. He told me things that he had never told me before. Things I didn't need to know that had nothing to do with me and had no bearing on "us." But he didn't want there to be any secrets between us. And we waited some more. Pretty soon the doctor came in and made some small talk. I couldn't help but laugh to myself because no matter how many times he had done this, it didn't seem to be easy for him. He started telling us his numbers. His hematocrit should be around 60 but his was 21. His white cell count should be around 15,000. His was under 400. His blood had blasts in it as well as tear shaped cells which he started to explain. My mind was racing. I was sure they were going to tell us that there was nothing they could do. I felt faint. The nurse noticed and made me leave. I made it 2 steps out the door and had to sit on the floor against the wall so I didn't pass out. They brought me juice and I felt like the worst wife in the world. Here my husband was getting the worst news of his life and I couldn't suck it up and be there for him. Once I felt better, I went back in. I wasn't screwing around. I wanted a diagnosis and a prognosis. The numbers meant nothing to me. He told me that my husband had Acute Leukemia. They weren't sure which kind and therefore couldn't give me a prognosis. But, they couldn't treat it there. They had already contacted the Huntsman Cancer Institute an hour away and they had accepted him. They were just waiting on a room number. We were told that we should go home and pack a bag and head straight there. They said to plan on being there a month or longer.

I called my mom. Then we drove home. He asked me to find him pictures of the kids. I couldn't imagine how we were going to tell the kids. But we did. We packed his stuff. I found pictures. And we sat our kids down. We told them that daddy was really sick and had to go to the hospital for a while so they could make him better. They sobbed. Except the 2 yr old who jumped on the couch. We held them for a few minutes and then had to leave our children in tears with their grandma. It was awful.

We checked him into the hospital that night. We spoke with a team of hemotologists, a team of oncologists, internal medicine doctors, infectious disease doctors, and a series of nurses and techs. We had to tell the symptoms over and over. Then we were faced with paperwork, told he would likey be sterile so we needed to decide if we wanted to spend the money to bank a sample, which we couldn't afford. We had just started trying for one last baby, a baby we both feel is supposed to be part of our family. I started my period the next day, the same day they started the chemo and it was too late to bank. Not that we could have afforded it anyway. It was like dealing with a death on top of everything else. But, I was also thankful in some ways because being pregnant right now would have just made this much more difficult.

Since then, they were able to determine that he has a rare and aggressive form of Leukemia called APML. It affects only 1 in 250,000 people and about 60% of people who get it will die of a brain hemorrhage before they are ever diagnosed. We thank God for that wood pile because otherwise, we may have just thought it was a really bad flu and I could have woken up within days and had him already gone. But anyway, he got 4 chemo treatments in 8 days which killed off his bone marrow and left him with no immune system. He was in the hospital from April 13th to May 22nd. It has been the hardest experience of my life and yet I have seen so many blessings, have been so humbled by all that people have done to help us and have learned how many people in this world are just plain good. :)

We found out a couple of weeks ago that in order for this to not come back as soon as he leaves the hospital, he has to be on a drug therapy called ATRA for the next 2 yrs. Without insurance, it would cost between $6-7000 a month. With insurance, our cost will be $900 a month. So thankful for good insurance. But, even with that, we don't have $900 a month extra. But we will find a way because he has to have it. We are asking for thoughts and prayers, if you are the praying type. We believe in the power of prayer and feel ok asking people to do that.

Anyway, I guess the point of typing that all out is that life can go from normal one day to not good the next. Cherish the people around you. Be thankful for even the things that seem hard, the challenges and the life trials. In hindsight I can totally see how so many things we went through prepared us to be able to face this challenge."

Now that he is home, I am struggling with different emotions but I will save that for a later post since this one is already so long.