April Update

A month has passed. Life is so full and busy! I know everyone is waiting for an update so here it is.

Matt went back to the doctor because of the increasing pain and redness at the site. We thought it was developing an infection again. His doctor didn't think so because he really couldn't see anything clinically that indicated infection. He felt the pain might be normal from the healing process. I wasn't convinced. The doctor did start him on antibiotics again, however, because "it won't cause harm." So Matt took 2 more weeks of his double antibiotics (Flagyl and Levaquin).

By the way, how much antibiotics is too much antibiotics? We are warned of giving children too frequent antibiotics because they will develop a resistance. Is this not the case for Matt? My friend whose father passed away from cancer comments that doctors will give cancer patients any amount of medications they want because they are not thinking long-term. They are thinking of making the patient comfortable for the here and now. Her father was taking LOADS of painkillers. Another friend of ours is taking such strong pain medicine through a continuous pump to handle the pain from her cancer that she can't tolerate her treatment procedures done at the hospital without excruciating pain because the standard amount of pain meds they give to help with the procedure don't get anywhere near the amount that she needs to handle the pain. The point is, I wonder how many meds are appropriate in this instance. It is something I should ask the doctor.

We are now a week or two after finishing the most recent dose of antibiotics and he is doing alright. He seems to be in pain consistently but it is a 1 or 2 on a scale from 1 to 10. I worry when he crashes asleep at 9 at night because that is very unusual for him. I worry when he gets to sleep in but he still feels tired during the day. I worry when he tells Abby (after he has swatted her bottom), "No! Don't hit me there! It hurts!"

Is this level of pain and tiredness normal? Or do they indicate developing infection?  We know now not to present to the doctor unless it is very clear that infection is occurring. I asked him at the last visit, "What if the infection does recur? What is the plan then?" (Matt is at the last stretch of school for the year. He is in the middle of testing and has about 4 or 5 weeks remaining. We want him well enough to finish the year.) The doctor's response was that if he presented with recurrent infection, he would put him back on antibiotics but for a longer term, a month instead of 2 weeks. I actually feel good about this because the antibiotics do work against the infection and we know that he will be able to finish the year without interruption.

He has his next set of scans scheduled for May 23rd when school will already be over for the year. We are planning a family vacation afterward so that we can celebrate clear scans! Positive thinking! This time, his oncologist has ordered a CT scan of the chest as well as a PET scan to check for metastasis anywhere in his body. We pray for clear scans!!!

The rest of us stay busy all day with home school. The kids are working so hard (and Momma too!) to get their work caught up, even if it means writing 2 English essays a day and an hour of math plus their other subjects. The computer is in use pretty much every minute of the day whether Ella is doing math on Khan Academy or Abby is writing an essay or Ella is doing her English. Just keeping track of everyone's schooling is a full-time job!

In addition to school at home, the kids are in a Drama Club with other homeschooling families. We are in an informal running club to get in shape for Matt's upcoming 5K fundraiser. Kian attends a physics class from a friend teaching her own kids the subject. We are busy with many great things.

I feel the need to get our house ready to sell by mid-May. I am researching to be sure there will be a house big enough for us to move into that is also within our price range! Did I mention that our house here in Missouri got flooded during the process of repairing from the fire?! I woke up after a night of pouring rain to slosh, slosh, slosh as I stepped through the living room! So now we are removing the carpet from the living room as well! Our home in Utah is under contract. That is good news! In our home here we now have repaired kitchen walls and ceilings now but are still waiting for the garage to get built. In the meantime, the kids thoroughly enjoy riding bikes and scooters on the new concrete poured onto the old garage foundation. It is smooth and and fun and picturesque next to the woods.

In the course of the past month my sister has formally adopted her 4 foster children, bringing their total count to 12! My parents and some aunts and an uncle traveled from out of state for the occasion which gave us a wonderful opportunity to visit. My dad stayed with us an extra several days and helped us get things repaired around our house. It was so fun. The adoption ceremony in the courtroom was beautiful and emotional and it made everything REAL! The temple ceremony the following day in the Kansas City temple was beautiful and emotional and it made everything ETERNAL!

We also enjoyed the peace and spiritual feast of a General Conference of our church this past month. I had been experiencing a lot of negativity and depressed thoughts and feelings for a couple of weeks prior to this semiannual event. General Conference was such a boost of spiritual uplift that I felt strengthened and peaceful and faithful again. Matt and I listen to a talk from conference each day to keep our faith high. It is a daily reminder to me that God's tender care for me and my family is sure, that we are watched over, and we will be guided and protected by His hands through our trials. I feel like I am being held in His hands and that we are sustained by Him because of the hundreds of prayers being offered on our behalf by our loving friends and family. We love you all.

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.

As if cancer wasn't enough...

The little ones are sick. They are stuffy and coughing and feverish. They want extra snuggles. I figured they would want a warm house today and it was snowing this morning. I asked Kian what it would take for him to build a fire in the woodstove and tend it throughout the day because I knew I would be busy holding babies and doing school. He and I made a deal. It was about 9:00 am. I remember looking at the clock and being glad we had gotten everyone ready and breakfast done and chores done so that we could start school on time.

But then Maggie needed me so I sat down with her to nurse. Kian made a comment, “The coals are still warm” which I paid absolutely no attention to whatsoever. The fire had been out all night. I was not concerned in the least about it. I should have been!!!

Maggie was asleep and I put her in her crib and checked the time. It was 9:30. “Let’s all do Team Cleanup till 10 o’clock!” This is where everyone chips in and helps do the deep cleaning that the house needs. It is first on our homeschool agenda. While Abby cleaned out and vacuumed under beds, Ella and Felicity tidied closets and drawers. I scrubbed the bathtub and washed shower curtain liners. Klaus played with his marble run. When Maggie woke up from her catnap, Kian played with her.

I heard Ella say, “We’re done with Team Cleanup! It’s 10:05!”

“Okay, everyone finish their job and wash your hands. It’s time to move on to school.”

I realized that Maggie was content and Klaus was playing, so I offered to Abby to give her a piano lesson.

A few minutes later during the lesson, Felicity who had been doing her schoolwork by the warm woodstove, came to me, sobbing, “Thibalaboginiayee!!!” It was unintelligible. We had no idea what she said! It’s normal for her to overreact to things with lots and lots of tears so I said, “What?! What’s the problem?” Sobbing, she exclaimed again, “The garage is on fire!!! The garage is on fire!!!”

Everyone who heard her quickly followed her to the side door where I could definitely see small flames heading up the wall of the garage and a lot of smoke coming off the building. I recognized that I was not going to be putting this fire out with a bucket of water so I grabbed my phone and dialed 911.

Soon I was telling the dispatcher that my garage was on fire. I gave her more information. She commented, “I hear children with you. Have you gotten out of the house?”

I thought to myself, “That is a good idea, to leave the house, just in case. The house is quite close to the garage and it might catch on fire. I’m glad she thought of that.”

I ordered, “Everyone put your shoes and coats on! We need to get outside!” It was 20-something degrees and snowing and windy like crazy. The kids all grabbed their gear and got out with Klaus and Maggie. I was still on the phone with 911.

A truck pulled up. I said, “Your people are here” and hung up the phone. He asked if my car keys were in the car. I thought, “That is a good idea to move the car.” I said, “No, I will get them for you!” I did so. Another man asked if I wanted to get anything out of the house. I thought, “Yes, that is a good plan. I can get anything valuable out of the house in case it burns down. This is the exact moment that people have their things prepared for.”

I grabbed a file containing important documents. I grabbed a few totes with photos. One of the men helped to put them in the car. I stood in the house looking around and had absolutely no idea what to grab next. I thought, “My kids are all outside somewhere. I need to go be with them.”

I then realized these two guys weren’t fire staff, they worked for the electric company. They told me they happened to be in the neighborhood checking lines. They noticed the smoke and came to investigate.

I walked down the driveway to find the kids. Apparently Abby had fallen on ice and she was holding Maggie. Maggie didn’t like that and was fussing for me.

I called Matt at school. “I am serious. The garage is on fire. Completely. You should come home.” He got things arranged immediately. It just so happened the substitute teacher that had covered his class for the last two weeks was with him right at that moment and she immediately offered to stay and cover his class. He drove home at 90 mph!

I was outside torn between wanting to watch the fire’s progress and be with the kids. I realized then that time was ticking. The fire was raging in the garage. The lawnmower was engulfed in flames. The fire might quickly spread to the house as they are only 4 feet or so away from each other.

I saw Kian who immediately began apologizing. I tried to be very clear that it wasn’t his fault. It was an accident and it could’ve happened to me. I told the kids we needed to stop and pray that the fire didn’t spread to the house. The kids started to worry about their things. “What about my Kindle?!?!” they cried.

“Ha! That is what you are worried about!?” I questioned in astonishment. Abby replied, “Yes, because I’ve gotten to Level blah-blah on Star Wars Knights of the Republic!”

We prayed together in the snow on the driveway. The kids got in the electric company’s truck. I went back to the house and was very concerned that it was going to spread. The wind was so strong and there was smoke coming out of the house. I called my friend, “My garage is on fire. We need to pray that the house doesn’t catch fire!” I knew I could count on her to take care of the kids if needed.

I texted Matt with an update. “The house is on fire.”

No sign of fire engines yet. I checked on the kids. They were moved to the Suburban which was turned on and warmed up. We heard fire sirens. I was excited to see them come to our house! I told the kids, Klaus specifically, to look at the fire engines coming! He wasn’t interested. He was sitting directly in front of the heater and he was burning up, very hot. I was worried about a very high fever. He had a 102 degree fever that morning. And this felt hotter.

I asked the kids if they wanted to go see the firefighters put out the fire. “NO!” they replied. It was cold outside and there was so much smoke. Abby said that it was making Maggie cough too much.

I ran back down the driveway to assist the fire crew. I saw flames coming up from the kitchen door. They asked how to get up to the attic. I offered to show them but they wouldn’t let me in the house. I got close and the smoke was strong! Too strong for me to get in there. I thought everything inside would be smoke damaged if not fire damaged.

I went back to the kids. I waited with them while the firefighters worked their magic. I called our insurance agent. I texted Matt. My friend came to get the kids. Another friend called who said she heard from a sister of a neighbor who saw the shed on fire. I hadn’t even seen that neighbor at the house!

Finally I spoke with the fire chief who said the fire was out.  Matt got home about the same time that another friend came by to offer help. We assessed the damage inside and out. The garage was a 100% total loss. The house exterior wall was burned. If it hadn’t been metal siding, the whole house would have burned he told us. Inside there were some holes in the kitchen walls and ceiling because the fire was in the walls and up in the attic. The beams were burned and the exterior walls were burned. There was a smoky smell but no actual smoke or smoke damage. The house would require repairs but overall everything inside was saved.

We met with the insurance adjustor. The electrician did his work to restore power safely. Another friend who is a contractor got busy making phone calls and assessing needs. He and other friends made temporary repairs so we could have heat in the house, then cleaned up the house and shampooed carpets. Basically our house is restored and livable again already.

What an event. As if our lives weren’t exciting enough. As if we needed any more drama. Fire travels so fast! So so fast!

Post Surgery

Cancer: Chapter One is over.

In this chapter, we survived the bewilderment of diagnosis, the horrors of radiation, the first 3-month scan to check for metastasis (none!) and the final surgery.  Check. Check. Check. Complete.

After surgery on Monday, our mothers proclaimed their joy and relief. "Cancer free!!" They shared with friends and family, "Thank Heavenly Father, Matt is disease-free!!"

Yet Matt and I didn't feel relieved. Shouldn't we be celebrating with gusto? This surgery finally removed the remaining microscopic cancer cells from his rear. We talked about it in the hospital room. We still felt worried. We still awaited the final pathology report. Matt worried about what else the doctor might find there.

We realize that this is only the beginning. This is only Chapter One. There are likely more chapters in this epic saga called "Life With Sarcoma."

We've learned a lot about cancer over the last several weeks. We've read a lot of people's experiences with sarcoma on social media. We've read scientific studies. We've read about holistic approaches to healing cancer. The truth of the matter is that everyone has cancer cells in their bodies. But our immune system catches and kills them before they grow into tumors. For some complex and unclear reason, Matt's body was unable to beat these cancer cells itself. It's our responsibility now to nourish his body back to health so that it will be whole and strong and well enough to fight the disease on its own.

The best book I have read on the subject thus far is "Staying Alive" by Brenda Hunter, Ph.D. The name of the book is not only one of my favorite disco dancing songs, but also our next goal for Matt! Dr. Hunter is a breast cancer survivor who so accurately describes the diagnosis experience and the real emotions of cancer that truth jumps off each page in the simplest of sentences.

"Against my will and to my absolute horror, I was entering a new land filled with eerie shadows, images of death, and dire pronouncements delivered by doctors I did not know and had never wanted to meet. A territory where I had neither a map nor a guide. A place I had no guarantee of leaving alive. The Cancer Zone." p. 4

"As I lay on the gurney waiting to be wheeled up to surgery, I wanted to jump up, rip off the surgical gown, and run. Run as fast as I could. Anywhere. Away from the hospital and my life. Away from me-from the body that had, after years of excellent health, betrayed me." p. 6

"Conventional medicine's 'cut, poison, and burn' approach to cancer just didn't make sense to me. Why take a sick body with a depressed immune system and subject it to a treatment protocol that might damage vital organs and cause secondary cancers? Frankly, the 'cure' sounded barbaric. While I knew that doing nothing was not an option, the treatment protocols I had heard so far gave me little confidence. I longed for a treatment plan that would end the abnormal proliferation of cancer cells, strengthen my immune system, and give me a fighting chance for survival. Did such a plan even exist?" p. 8

"My goal was not to deny the severity of my illness but to combat it on all fronts: the physical (which was all the doctors had discussed so far), the psychological, and the spiritual." p. 9

"I longed for a perspective that would not only give me hope that I could recover my health but would address the causes of the physiological breakdown in the first place." p. 17

"I realized that cancer is more than a wake-up call; it is the body's last plaintive cry for help. The tumor is saying, 'Change or die.'" p. 19

This last quote really struck me. Substantive changes were in order or else Matt would die from this epithelioid sarcoma. As I read this book, I shouted inside, "Yes! Yes! Yes!"

Dr. Hunter has done all of the research I've been looking for with regards to a natural approach to healing cancer. She discusses the significance of a vegan diet. Meat and dairy and junk food are toxic! She talks about flooding the body several times daily with nourishing and easily absorbable vitamins from fresh vegetable juice. We bought a powerful juicer! She discusses the importance of detoxification, stress reduction, taking care of yourself when you're used to taking care of everyone else, daily exercise, time spent outdoors, and more. The stories of cancer patients are inspirational but most important, this book gives me something that the oncologists certainly don't offer: HOPE.

I feel this is the path for Matt so strongly that I've been reading it aloud to him every opportunity I find to get him on board and to see if he desires to make these changes himself. We're about halfway through it and his impression thus far is, "Overall it sounds good."

Yesterday Matt came out of the bedroom from a late afternoon nap with the surprising news that he had heard from Kim, Dr. Rosenthal's nurse practitioner. She had the final pathology report results already from the tissue they removed on Monday. There were clear margins and basically, everything was clear. No cancer.

It didn't really settle with me at that point, maybe because I had to make dinner and Maggie was crying and there was so much kid noise. But that evening I felt melancholy. I must be tired still, I thought to myself. As we climbed into bed together I asked him, "Are you relieved?" And he said, finally, "Yes." "I am too. And I kinda just want to cry."

Chapter One is finally over.