Is this what normal feels like? Because it's awesome!

Matt's hospitalization and infection really took its toll on me. Randi, his Mom, flew out from Utah to be with us and help out with the kids. That was a blessing because I didn't do any dishes that week or drive Kian to seminary. That was awesome!

Matt got better on the antibiotics. On Saturday he felt better enough to go out and about with the family. We drove to Hamilton which is the hometown of the Missouri Star Quilt Company. We took Randi into all of the shops and browsed the amazing fabrics. We ate lunch at Subway. We drove and stopped at stores we had always seen but never visited before. It was really fun. We looked at tiny home displays and cabins for sale. We even toured a friend's cabin-like house that was for sale out in the country. It felt so great to just get up and get ready for an outing like a normal family. To just go and do something for fun and not worry about health or cancer. It really felt great.

Matt was better enough to go back to work. He's been getting caught up there and even attended his parent-teacher conferences which was really important to him. The kids and I have buckled down and figured out what we need to do to get school done on time. I've bribed them with a camping trip this summer if they can get their required items on their list done. It has not been easy because it's so much more schoolwork each day than they are used to. We do school from 9 am till 4 or 5 pm but I've been grateful for the time to really focus so much attention on it since we got behind. In all of their spare time they ride bikes or scooters outside on the big concrete pad where the garage used to be.

The weather has been so fair this month that Maggie has been able to go outside and explore for the first time in her little life. Last year she was just a baby during the summer. Now she can walk and step in puddles and watch bugs and pick up stones. She loves it! Abby has already encountered the first tick of the year!

Every spare moment of my time is spent cleaning and decluttering our house. Ever since the fire I have felt the walls of this house closing in on me. I am frustrated with everything in it, even things I have always loved about the house. I feel a great big push from somewhere unexplainable to get this house ready to sell. I'm trying to get rid of half of all of the stuff we own. Maybe then we can fit here. Or maybe then we will sell it. We have had to do paperwork to get insurance $ to rebuild the garage and repair the kitchen. Hopefully construction on that will start SOON! We are also planning to sell our home in Utah. We still have to finish the "list" of all of the items that were burned in the garage to turn in to the insurance company. Between "the list" and taxes and decluttering and homeschool, I have been very busy!

Matt and I have been thoroughly enjoying this period of normalcy and health. Springtime is here and there is so much to do but with energy to do it, life feels grand. Everyone has commented on how great Matt looks. His principal is organizing a 5K fundraiser for him on April 30th and there have already been generous donations to go toward medical expenses and lost wages if he needs to take short-term disability. We feel so very blessed.

It is hard to ignore the posts from the Epithelioid Sarcoma Facebook group when fighters finally succumb to the stupid disease or when there is news of progression of their cancer. It is very hard for both of us to keep our thoughts positive when we wonder continuously on how long this period of health will last. But I try to recognize the blessing of today. The last couple of weeks of "normal" have felt so great. I treasure every day and every moment with him. We both will enjoy each day of health.

Today he has admitted he is feeling pain at the site and I definitely see redness that wasn't there before. It is very possible that an infection is recurring which we will keep a close eye on. We hope it will turn out to be nothing but we know it is very likely to turn into something which will require more meds, more surgery, more stress...

A tired mommy at 2 am

It’s 2 am and I can’t sleep. I don’t know why. I’ve been tired most of the day. I’ve been short-tempered and over-emotional. I need a good night’s sleep. I need to catch up on the poor sleep I got over the past week while Matt was in the hospital. He is home now. His infection improved enough to be sent home without the I&D.

I guess I need to back up to fill in the details. He developed an infection after his surgery, after he returned back to work, which became nasty. A strong antibiotic for 10 days didn’t help. It got so red, tender and swollen and drained such a stinky fluid that he ended up in the hospital for 4 days for IV antibiotics.

“Do you know what I smell like?!” he asked one day after his shower. “I smell like a sewer!” he blurted in disgust.

The doctor really thought he would need an I&D (irrigation and debridement) to clean out the wound which would mean leaving the wound open after cleaning it all out and then packing it twice a day for a month or two as the skin healed back together on its own. But so far the antibiotics are working and the procedure hasn’t been needed. He did get a drain put in to help relieve the pressure inside the wound.

I asked the surgeon if the infection came about because of the damage caused by radiation. “Absolutely,” he answered. I asked if the damage would be permanent. I can’t remember his exact words but it was something to the effect of, “There are certainly long-term side effects caused by radiation. I can’t say the word ‘damage,’ but…” and then all I heard was blah-blah-blah because the point of his schpeal was that radiation kills healthy cells and sometimes the body doesn’t heal itself back into its prior healthy state.

Radiation is un-cool. This we have learned.

What I want to do is crawl into my bed and cover myself with blankets and not be interrupted for 12 straight hours. No, make that 24 straight hours. No baby that needs to nurse. No little boy that wakes up to pee, then stumbles into my room and needs snuggles before being sent back to his own bed and then wakes up at 7 am which feels to me like the middle of the night.

I just want to cry and let all of the stress and emotions drain out of me. I want to let all of the trauma experienced over the past few months just go away. I want to let it all out. I want to just cry and cry and let it all drain out of me until it is all gone.

I want to be calm. I want to not be scared of what dramatic event is going to happen tomorrow. Will it be a feverish baby that won’t let me put her down all day till my back is so sore it feels like it will break and I am unable to accomplish any of the hundred chores that are piling up on my to-do list?

Will my husband’s infection get better or worse? Will he have to go back to the hospital? Will I be able to care for him and for my 6 kids?

Will I be able to mentor my children through our school year or at least monitor their progress and keep the most basic of records?

Will our house burn down in a fire? (We had another accident today with melting plastic on the wood stove which filled our house with noxious fumes and smoke and required us evacuating for several minutes. Seriously).

Will the car start? Will I ever be able to make decisions again? Will my kids be safe as they ride their bikes in the road?

Will the cancer come back on the next scan? When will the next scan be? Will we have 10 years with Daddy? Will we have 2?

Should we move? Should we add on to our house? Should we combine households with my mom?

There are so many unknowns. That is what is so awful about cancer. Two of our friends have had metastases in a short period of time from their initial diagnosis. It is hard to stay hopeful when the reality is so dreary.

My oldest daughter turns 12 tomorrow. She is so excited! I am so excited for her! I am going to take her on a shopping and lunch trip. I want to savor these experiences. I want to enjoy all of these moments. I can see her growing up right before my eyes. The same goes for Maggie. She is changing into a toddler. She is exploring in new ways each day. I want to just enjoy each day I have-we have-with Matt and not take a day for granted. I want to feel balanced physically-emotionally-mentally-spiritually. I want to be happy through all of these trials. What I am feeling now, however, is fatigue and depression and fear. I want to go to bed.