PET Scan Blues

With antibiotics I was able to recover from pneumonia and got back into speech and physical therapy this past week. The awesome answer to prayer is that because I was knocked out by pneumonia I didn't do any exercises in my mouth or neck which helped some of the painful sores in my mouth and throat heal. This allowed me to back off of some of my narcotics. So far I'm at half the dosage I was at before. If it weren't for the terrible withdrawl symptoms I would get off the narcotics faster. The withdrawl makes me extremely irritated and jittery so I have to try really hard to be patient with people.

The hardest thing about waiting for my PET scan on October 1 is just not knowing what to do next with my life. I want to know if I'm going to have a few more months cancer free, or if I'm going to have to gear up for more treatments. I want answers to all the weird things I'm feeling like pain, shortness of breath, and swelling in my neck. In a lot of ways I feel unmotivated because I don't know if my efforts are going to matter. Am I going to live or die? I know its crazy to think that way, but those thoughts bombard my mind all day long and I have to fight to push them out. Please pray that the unknowns would not paralyze me and cause me to be fruitless in my duties as a husband, father and leader of my home. My family needs me more than ever, and I feel weaker and more distracted than ever.

We're covered, right?

ANDREW WRITES:

I woke up this morning and felt really anxious about all the different pressures and pains I feel around my head and neck. I sat up in bed to make it a little easier to breathe as Grace lay beside me still sleeping. I thought, "if cancer did return and took my life, what would I want it to be like at that very last moment when I breathe my last?"

When Grace woke up I told her that I was really struggling. She rolled over onto my chest and looked straight into my eyes. Tears began to roll down my cheeks and I said, "If I die. I want you to smile and not cry. I want you to be happy and excited for me. Then I'll be the happiest I've ever been, for that last moment."

What bothers me so much about the thought of death, other than extreme pain, is the thought of leaving my wife to be so sad without me to comfort her.

She asked, "Are you afraid to die?"

"No. I'm more afraid of what is going to happen to you guys."

Grace responded, "I struggle more with being afraid to die, but God has given me the faith to believe that He's just going to take care of us if you die. He's always been faithful. Then we're covered, right? God has provided special faith for you to not be afraid to die, and He has provided me with special faith to trust that everything will be alright without you."

I wish people could see just how wonderful my wife is. Her smile is like the bright morning sun that wakes you up assured that it is going to be a good happy day. And her kind words melt away the fear and loneliness that are an impenetrable block of ice around my heart.

It almost makes me angry that people don't always see the multifaceted beauty that I see in her every day. Its like you take the 7:14 AM commuter bus into the city and you sit next to the same group of strangers in suits every day not knowing that one of them is an angel. That's Grace.

Pneumonia

The kids have had a cough this week and passed it onto Andrew. Due to the damage chemotherapy did to Andrew's immune system, that cold progressed into pneumonia for him.

Thankfully, his vital signs and oxygen levels are good, so they do not have to admit him into the hospital. They prescribed antibiotics, which should hopefully make him feel better within 2-3 days. If not, then they will have to check if he has an additional infection that he would need to be treated for.

Please pray:
1 - for quick healing for Andrew and that the antibiotics he is now on would be effective and sufficient.

2 - that I would not get sick, as I have felt like I have been fighting off a cold since last week. Pray for all of us, as Andrew's pneumonia is contagious.

3 - for wisdom and effectiveness to take good care of Andrew

Things we can be grateful for:
- that the Lord gave Andrew the wisdom to insist to talk to a doctor before his PET scan yesterday. The doctor then recommended postponing the scan for two weeks, despite that all the PET scan technicians had said it would be okay to do the scan. Perhaps this is in answer to our prayer that his PET scan would be accurate, as the PET would have registered the fever and swelling in the head and neck region as well as the infection in the lung as a false positive.

- that this is the first time Andrew has gotten sick since last January. Praise the Lord he never got sick during radiation and chemotherapy in May and June, despite how he was even more vulnerable than he is now.

Thank you again, everyone, for all your prayers and concern.

Love,

The Mark Family

Rain from Heaven

GRACE WRITES:

The Wednesday before last, Audrey Frost came to my house. She smiled at me as she walked in, put her hands firmly on my shoulder and looked at me with her blue eyes through her silver-rimmed glassed. Her chin-length hair was grey. She was one of the ones who had been around the church since the beginning 40 years ago.

"Grace," she said, "I'm so concerned for you."

I don't know Audrey very well, we sit in the same row at church on Sunday mornings, and have only exchanged a few conversations here and there. She explained that she doesn't get internet very well in her house, but she had read my last blog. "You sound so discouraged, Grace," she said. "And I believe one of the gifts God has given me is to have such a strong sense when someone needs me. Now, I know you have other people, but I don't know, I just feel so strongly that the Lord wants me to come alongside you and be a mother to you and encourage you."

I began to cry. Somehow when she said that, it just seemed so perfect, though I had never thought of that. "Yes, yes! That's exactly what I need," I cried. I may not know my needs, but the Lord always does. And He meets all our true needs, so kindly, even when we aren't aware of our needs ourselves. Having a true "older woman" by definition, who looked and talked like she had fallen off of the pages of Titus 2 was like a dream come true.

"Grace, I feel so concerned for you, because you sounded so discouraged in your blog. Now, you said that you feel guilty about so many things. Why do you feel so guilty?" She was holding my hand as we walked into the living room.

I went on to say how sad I was that I couldn't be a full-time mom to my children and a full-time nurse to my husband and that I would just do absolutely anything to keep my husband from dying...not that it's really up to me.

She sat me down on the couch and sat directly in front of me on the ottoman, her hands firmly holding my shoulders, looking into my eyes, smiling. "Well that's not sin," she said. "That's weakness. And you don't need to feel guilty for that. And the Lord can give you strength to do all those things, and if you can't do it on your own, then the Lord will send someone to help you."

I certainly knew that to be true.

"And if you have sinned, what does 1John 1:9 say you have to do?" she said.

"If we confess our sins, He is faithful and just to forgive us our sins and purify us from all unrighteousness," I answered.

"That's right!" she said. "So if you've done that then you don't have to feel guilty. Because what is it saying, if we still feel guilty even after we've repented of our sins?"

"That Christ's blood is not enough."

"That's right," she said.

"But I feel guilty all the time anyway," I said. "I always feel guilty because I know there must be sins that I haven't confessed either because I'm unaware or because I've just blown it off and haven't thought deeply enough about it."

"Well then you can pray what David did in Psalm 139: 'Search me, oh God, and know me. Test me and know my anxious thoughts. See if there is any offensive way in me...'"

I looked at her like, let me tell you, there have been times where I have sung that all day long.

As if in response she said, "And if you asked the Lord to reveal to you any sin and He doesn't, then you don't have to worry about it then. That's why He said in 1John 1:9 that He purifies you from all unrighteousness. He knows. He knows that we are weak and don't know all our sins. There's too many. That's why when we confess the sins that He does reveal to us, He purifies us from all unrighteousness."

I nodded, still crying.

She offered me a tissue. "The Lord loves you. And is for you and rejoices over you. He loves you so much."

I stared at her lips, mouthing her words, the tears pouring. Each day the gospel still continues to be a shock to me. How is it after my relentless sin, He continues to forgive me and is for me and is not only not reluctant in His favor, but rejoices over me? How could THE GOD OF THE UNIVERSE adopt me as His precious child?

"There are only a few things that the Lord says we need to get done everyday," she said. "And what are those things?"

I was silent for a few seconds. Then laughed and cried at the same time: "I'm trying to think of all the 'right' answers, rather than say what I'm really thinking and struggling with."

She nodded, still smiling at me so warmly, still bracing my shoulders and looking into my eyes. "That's okay," she said.

"Feed my children and my husband. Make sure they don't die," I said.

She continued looking warmly at me.

"I don't know why I'm so obsessed with that, so fearful that they're not going to get fed. It just takes so much time to make all of Andrew's foods and juices. And yet by God's grace, He has always helped me to get those things done."

She nodded. "What else? What does the Bible say we need to get done everyday?"

"Worship Him?" I offered.

"That's right," she said. What else?"

"Well, I guess we are to love Him...Trust Him...Obey Him..."

"Right. And what does Philippians 4 say?"

"To be anxious for nothing, but to make all our requests known to God in thanksgiving and the peace of God which transcends all understanding will guard our hearts and our mind," I said.

"So you see, He says not to be anxious, because He will take care of it. And it takes so much energy away from you to be worried. I'm concerned for you and your health. It's not good for you to be worrying all the time."

I nodded, sniffling with more tears. I had been feeling convicted of those very things that week.

"And what about 1 Thessalonians 5:16, what does that say?" she said.

"To rejoice always, pray without ceasing, in everything give thanks."

"That's right!" she said. "And why are we able to give thanks in everything?"

"Because He is good and does everything for our good and His glory.

She nodded.

We talked for a little while longer about various things, Audrey continuing to express love and concern to me. She hugged me.

"Thank you, Audrey," I said. "Thank you for ministering the gospel to me."

The next morning Audrey called me while I was parking the car at the doctor's office. "Grace, how are you?" she said.

"I'm good!" I replied.

When I hung up the phone, I turned to Andrew and said, "I think that's the first time I've said 'I'm good' in at least a month or two."

The rest of the day felt like a celebration. I was able to enjoy all of God's gifts - the sunshine, my children, and the sudden energy that made my husband awake enough to be able to chat - rather than be in a cloud, distracted from what was in front of me. I could celebrate and enjoy those things all because of the gospel: that I knew I was accepted in Christ and that His wrath, indeed, was not against me. No, "There is no condemnation for those who are in Christ." And yes, "If God is for us, who can be against us?" And, "Nothing can separate us from the love of Christ."

Rather than feeling condemned and judged, which only made me want to cower in a corner and hide from God, Audrey's ministering the gospel to me made me want to depend more on the Lord, pray more, and read His Word more, bringing all my disappointments, hurts, and frustrations to Him, because He cares for me and is not against me.

I love the gospel of grace. To be rescued from His wrath by trusting in His Son Jesus to have taken the guilt of my sin on Himself on the cross. What incredible injustice for Him to repay my guilt with his favor rather than His wrath. The gospel, what rain from heaven.


Please pray for us:

1. - That we would believe the gospel, (that Christ's blood is enough and so He is for us and rejoices over us and His condemnation is not against us). That we would not believe Satan's lies of discouragement. It is a daily battle.

2. - that we would be anxious for nothing but that the peace of Christ would rule our hearts

3. - and that Andrew would be able to get off his pain narcotics ASAP. Right now that seems impossible, his pain is so great, and yet I think it's mostly his narcotics that make him so tired and feel so yucky so much of the time. But I know the Lord answers our prayers, so we can come boldly before His throne with our cries and ask God to heal Andrew of all his pain so that he won't need the pain killers.

4. - that Andrew's full body PET scan on Wednesday, Sept. 17th would show Andrew to be cancer-free. That it would be accurate and there would be no confusion about the results. It will take a week to get the results.

Please keep praying

As I've mentioned before the pain in my mouth and throat has continued to increase. One possibility is that radiation has really destroyed the tissues and they have continued to swell, bleed and not heal more than any of the doctors expected. At this point, the doctors don't really know what to say because many things could be happening in my body for many reasons and it is so hard to tell.

What I'm feeling:

1) My tongue and throat are still very painful and it is extremely painful to talk, swallow or do any rehab exercises.
2) The swelling in my thoat has increased slightly in the past month which makes it difficult to protect my airway from saliva, mucus and water that I drink. It also can be difficult to breath if I turn my head certain directions. This is worrisome because sometimes swelling is due to tumor growth.
3) I'm starting to get some ringing nerve pains every now and then. This is also worrisome because I got this very bad last year when I was first diagnosed with cancer, but it has not been bad this year. I am just starting to notice more nerve pains in my ears.

Please pray that my PET scan on September 17th would not show any activity. That would be great. If the scan shows activity it may or may not be cancer, so pray that the doctors would have wisdom in interpreting the scan. Each day I wonder if my conversations that day will be some of my last. I pray that cancer will not return and that I will continue to be able to speak.

We take heart that the Lord is my father, and He rejoices over me.

Romans 8:38-39
For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord.

Surprise!

Grace took me out to a movie on Saturday afternoon. Around lunch time she hinted that I should take a nap before we go because I usually need to take a nap in the afternoon in order to make it through the evening with my family. Not suspecting that anything was up her sleeve I figure that would be a good idea and went for a short nap. When I woke up we rushed out the door to the theater and bought tickets for Wall-E. Sometimes I wonder how kids understand those animated movies because it almost seems like they are geared towards adults. I thoroughly enjoyed the movie and its commentary on modern society.

When we got back home at 4:45PM I was quite tired and told Grace that I need to run upstairs and take another nap until dinner. So I rushed in with nothing but my bed in mind - SURPRISE!

I was scared, shocked, and confused. At first I thought, did accomplish something recently? Did I just finish chemo or radiation and they're congratulating me? It took me a little while to realize that my birthday was coming up on 9/11 but I didn't expect a party this early.

I was so happy to see people from church, work and our neighborhood. After blowing out the candles on my birthday cake I chatted with friends for a while. Even though it hurts to talk I try really hard to talk as much as I can so that I can exercise my mouth muscles. I actually had to run upstairs to take a dose of pain meds to make it through a few hours of talking to people. Three hours later after everybody left I finally made it to my bed exhausted and passed out immediately. Thanks Mom and Dad for coming all the way out here to throw me a surprise party and thanks Grace and everybody else for helping to put it together! You really did surprise me.

Stranger Hospitality

ANDREW WRITES:

After physical therapy on Tuesday, Grace and the kids and I went away for 2 nights this week to a bed and breakfast about 1 hour from our house. I had booked an 1800s log cabin that had been preserved in its original state and filled with antique furniture. It was like staying in a museum. It felt like we were living in the 1800's with the exception of the bathrooms. Grace and I even felt some culture shock initially, the change in atmosphere in the house was so pervasive. Perhaps people were shorter back then because I hit my head quite a few times on the logs sticking out from the ceiling. Little Gracie even managed to hit her head on the slanted walls!

Merriam, the owner/innkeeper greeted us when we arrived. She is a 69 year old woman who has been running this bed and breakfast for over 20 years. She invited me into her living room to complete the registration while Grace took the kids to the log cottage to use the bathroom. As I was sitting there waiting for the credit card to process, Merriam asked me if I had surgery recently. I told her that this was my second surgery for cancer and described some of the treatments that I did recently. Merriam's face sunk. She let out a big sigh and didn't say anything for a minute. I didn't know what to say either, so I just sat quietly. Then she said, "It's just too bad. Somebody so young. It's just too bad."

I didn't really know what to say in response. Sometimes I try to cheer people up by telling them how it's not hopeless and I'm actually quite happy despite what's been going on and that I believe in a God who can work miracles. Usually I get really uncomfortable sitting silently in front of a stranger, but for some reason I felt comfortable leaving the conversation at that. There was a manner about Merriam that made me feel very comfortable and welcome in her home.

Before leaving to show us around the property Merriam said, "It was a little hard to understand you on the phone, but in person it's not a problem at all." For some reason those where really encouraging words to my ears. I felt thankful that she could understand me.

After we finished the tour of the property the kids played and ran around freely like they were at home. AJ was so excited about the chickens and horses and kept talking about them all the time. We really felt like we could get away even though it was just for 2 days. I felt sad that we missed prayer meeting on Tuesday night at our house and Wednesday night at church because I always love seeing people from church, but it was nice to just be alone as a family with no phone calls or doctors appointments to worry about. The kids loved being on a farm with animals and they even got to touch them and feed them.

Merriam proved to be the kindest and most hospitable hostess I'm ever met. I typically feel self-conscious around strangers about the fact that I can't eat and have to eat through a tube in my stomach. Even at church gatherings I'll feed myself in the car or try to hide so people don't have to see. But for some reason instead of feeding myself before I went to breakfast, I decided to bring it and feed myself in Merriam's 1700's dining room. I didn't feel self-conscious around Merriam. In fact, I almost felt loved by her even though we barely knew each other. As I was feeding myself, Merriam came over and said, "What is that you're having there." So I went on to explain how I couldn't eat and had to feed through a tube.

In response her face sunk again just like the first day when first I told her about my cancer. While she served some delicious looking banana bread, eggs, bacon and hash browns to Grace and the kids, she told me about people that she knew that had cancer and had digestive disabilities. Then she told me how she herself had to relearn how to eat because a surgeon who removed her tonsils when she was five damaged the epiglottis so she had trouble protecting her airway. That is basically one of the problems I have with swallowing as well. After that Merriam told us about how she broke her neck in a car accident and should have been paralyzed, but miraculously is not, yet can't turn her head left and right and how her husband left her after 28 years and she had to open this bed and breakfast in her home to make money just to survive. Then she told us about her daughter's husband leaving her and how tough her life was. I remember thinking to myself that she really has had a tough life but she's not bitter about it. She's just so happy all the time you wouldn't know it.

As we talked more we mentioned our church, Redeemer Bible Church, in Minnetonka. Merriam said, "Oh, thats nice. I'm familiar with bible churches because I used to go to Maranatha Bible church when I lived in Bloomington. Where in Minnetonka is you church?"

"On Highway 7", we answered. After Merriam mentioned Maranatha Bible Church some lights started turning on for Grace and I.

It turns out that Merriam used to go to our church 30 years ago when it was still in Glen Lake and was called Maranatha Bible Church. Since then it moved to Minnetonka and changed names to Woodland Hills and then to Redeemer. She knows many of our friends like Betty C. and Audrey F. who helped start the church and two of the pastors, Don G. and Doug S. In fact, she went to high school with Betty. Small world, huh?

After talking about the church and expository preaching and other things, our time at the bed and breakfast came to a close. After looking back on our experience I just felt like Merriam ministered to us in a special way and with few words. She made complete strangers and their toddler children feel welcomed and loved. She had her own burdens but always had a warm smile and caring personality all day long. She knew what pain and discomfort was like, and always spoke to us with compassion and love. Grace and I wanted a short vacation getaway, but the Lord was so gracious to give us a loving friend along with it.

Merriam Helping Gracie feed the horses

AJ and Gracie playing in the field

AJ wearing the free hat they gave me after my oncology appointment

Doing Better

I know that many of you have been concerned about how we are doing since our last blog. As I had mentioned, Grace Lindeman's help restored some mental capacity to me to be able to understand what our needs are better and how to meet them. Prior to her coming, I had no idea that she was what I needed, and almost said it wasn't necessary, I was so in denial, expecting Andrew to get better any day like he had last year.

Also, writing down what I'm feeling and thinking also helps me to realize things after I write them. And so, a lot has changed since the last blog. We have since had another teenager who lives locally come a couple of times a week to make Andrew's juices and foods, and that has made all the difference in the world, freeing me up hugely.

Additionally, we realized since Andrew wasn't starting physical therapy until last Friday, we had a couple of days prior to that free. And so very last minute, Andrew and I, and the kids went away for three days to this place that was a row of cabins in Minnesota. It faced these green mountains with a river that ran alongside it. It was really kid friendly with a large green field in front of the cabins and a big playground. The first day we were there, we went with the kids to play on it, and Andrew said it was so nice just to focus on them and have nothing else that we have to attend to hanging over our heads. We were only supposed to stay until Thursday, but Andrew said he was so happy there, and he said that being happy must be better for his health than anything else, so he had us extend our stay until Friday morning and went to his physical therapy appointment on the way back from our trip. I, too, felt very refreshed afterwards.

I think one of the reasons we had that idea to go away was a few different people had said to us that even though we can't go on vacation for a few weeks like we would like to, we should try to go away locally as often as we can. Then, a check arrived in the mail from a friend saying the same exact thing. We figured we should probably stop stalling and just go.

And so we're going to continue our vacation again tomorrow after Andrew's physical therapy for two nights until Thursday. The kids are so excited because this time we are going to a bed and breakfast on a farm.

(Who would have ever pictured us actually setting out to go on vacation to a farm? I remember when we first visited Washington and stayed at someone's house who had horses and chickens and fresh eggs in the morning and we thought we had landed on some other planet. Even a couple of years into it, driving past some llamas on someone's front yard on the way to a friend's house, I thought I had entered a movie that was a comedy. In the end, our stay in Washington must have had its impact on us city slickers).

Additionally, Andrew's parents will be arriving this weekend, and his mom will stay on to help us and drive Andrew to his appointments.

The Lord is teaching us so much, which we will have to write about next time!

Thank you to everyone for all your love and concern and prayers. We know that much of the encouraging things that happen must be the fruit of your prayers.

And from Andrew:

1) I got some new system of pain meds two weeks ago that seem to be working better. Although I still suffer the narcotic side effects and withdrawal symptoms (extreme fatigue, tremors, weird moods) every time they start to fade, it is not nearly as bad. Now instead of going into withdrawal every other day, it is about twice per week.

2) Grace and I received two gift checks in the mail last week and prayed that the Lord would provide a relaxing place to go last minute for a short family vacation even though everything but hotels are pretty much booked solid. I called around last week and was about to give up, but then begged that God would provide if He willed us to go. Then it came to mind that I should call the two really expensive places anyways and see what they say. It turns out that those two places happen to have 1 cabin open the days we wanted last week and this week, and they miraculously are giving it to us at half price which fell into the price that we were looking for!

3) I haven't thrown up in a few weeks! The gagging still occurs, but for some reason I have been able to keep the food down and my weight is stable. The docs say that it is great that I'm not losing weight. They don't expect me to be able to gain for a while.

Requests:
1) Keep praying that I will be fully healed, and that the pain would subside. I will have my first cancer scan in mid-September.
2) Keep praying for encouragement for Grace and I. We are feeling much more encouraged this week.

That We Might Not Rely on Ourselves

GRACE WRITES:

The other day, the doctor informed us that it has been two months since Andrew's treatments ended. I couldn't believe it, because Andrew's healing is still excruciatingly slow. The doctor said that this is much more of a normal timeline for healing, and that the reason we're feeling so frustrated is because Andrew bounced back so ridiculously fast last year that we have the wrong expectations. She said most patients don't even get their feeding tube out for nine to twelve months. We aren't using the feeding tube as our gauge for Andrew's healing, though, because we don't know if Andrew's jaw is going to survive for him to eat (or have a normal face) or even if the surgeon left enough swallowing muscles for him to ever re-learn to swallow. For all we know, the feeding tube is permanent. So instead, we are gauging his healing on things like his energy-level. While he has made some progress, he still sleeps and rests the majority of a 24-hour period and his pain meds are at their highest due to all the pain in his mouth and neck region, still healing from all the burns inflicted by radiation and new ulcers from irritation during his rehab exercises. The only way Andrew can talk or do rehab exercises is with the use of copius amounts of pain medications. Although they work okay, they make him very tired and he is so addicted to them that his body goes into an extremely uncomfortable withdrawl all the time because it is so hard to keep a consistant level in his blood.

I suppose our lives must be a mystery to most of you. Now that treatment is over, things actually seem harder than ever. In the past when we had hard days we grinned and beared it, lost some sleep and recovered over the weekend or over our next vacation. Nowadays, it's as if we've had 6 months straight of tough days, with nothing but a 3 day vacation, with the burden of anticipating tough days for the forseeable future. Its like running a marathon, getting an 8 ounce cup of ice cold water, and then being told that you have at least 26 more miles to run.

Here is what one day this week was like and is representative of a lot of our lives:

I woke up and had my time alone with the Lord. The kids and Andrew woke up and we all rushed off to a morning of doctors' appointments. I have to drive Andrew to everything, not only because I need to hear everything the doctor says, but because the narcotics make Andrew extremely tired and slows his response time, making it inadvisable for him to drive. The kids got to play with the toys in the waiting room until the doctor called us in. When we followed Andrew into the doctor's room, the kids sat down on the chairs and I handed them a pile of books, while Andrew and I spoke to the doctor for an hour or so. The kids went through their piles of books and began to get ansy. Just then the doctor had Andrew sit on the table to look into his mouth. The kids jumped up from their seats, pawed at me to pick them up so they could look too. This is the part that a nurse in the room always laughs and comments on how quiet the kids get as they stare from behind the doctor as she shines a light into Andrew's mouth.

It is such a comfort to have the kids with me. They are a distraction and make me smile in-between our tortuous talks with the doctors.

We often have multiple doctors' appointments in a day. This day we managed to finish around not much later than 1pm, which worked out, because I needed to feed the kids lunch. We hardly ever eat out anymore, because it's torture for Andrew, but I asked Andrew if we could this time, because I've noticed that lately whenever we return from doctors' appointments, I get extremely overwhelmed between being starving because I haven't eaten yet and anxious about all the adjustments we have to make either in Andrew's meds, foods, routine, etc., so much that I usually get paralyzed into utter confusion and don't know what to do. So, I thought we should do something fun and relaxing for me and get lunch in Minneapolis (I'm learning that I need to take care of myself if I'm going to be able to keep taking care of my family).

Andrew injected his food through his stomach tube in the privacy of the car while the kids and I started lunch inside, so that he wouldn't add hunger to his frustrations when he saw our food. After lunch, driving home, and dropping off Andrew's inevitable new prescriptions for various pain remedies, it was way past the kids' nap time.

Andrew usually rests or naps during the kids nap too. When he's awake, he works on his jaw stretches to maintain his ability to open his mouth. Despite the heavy-duty pain meds he's on, these stretches are excruciating.

Once everyone's down and quiet in their rooms, it's as if a switch is flipped and suddenly exhaustion overcomes me. So now I have a choice: I can either take a break for myself and neglect my responsibilities towards Andrew or ignore my own body, drink some caffeine, and take the next two or so hours of their nap to make Andrew's homemade formula in the Vita-Mix and eight cups of vegetable juice in the juicer, and find out from him if there's anything else he needs. (I usually like to make the food and juices daily so that they are as fresh as possible and because they take so long to make that if I made extra batches it would take some painful amount of hours).

Once the kids wake up, it's dinner time. Dinner, of course, still has to be made. If I took a break and didn't finish making Andrew's food during the kids' nap, then the kids will have to have dinner late, I'm in chaos, and I'm trying to make all their food all at once. So I tell the kids to color or play outside, and I start on dinner. Soon after dinner, it's time to prepare for the kids to go to bed. We sing and pray together.

Andrew starts on his night routine. He feeds himself his fourth meal, takes all his meds, showers, and does his speech therapy exercises and jaw stretches. It takes at least an hour for him to prepare for bed. I wind down. And that's pretty much our day.

Other days when we don't have doctors appointments, I spend a lot of time on the phone with doctors, making appointments, asking questions about whatever miseries Andrew is encountering that week, and catching up on errands, buying his vegetables for his juicing, etc. I'm always looking for ways to save 3 minutes here, thirty minutes there, because it all adds up, and I can use every bit of it. I've started using paper plates and paper cups for everything. As much as possible, I try to do my errands at the little strip mall within a mile of our house. I realized, why am I still going to Target when I no longer live down the street from it like I did in our two previous living places? So I go to Snyder's Pharmacy for those types of things, and I pay a little more at the local grocery store, and a little more where I get my haircut. And when I finally got to take Gracie to the dentist about a tooth I was concerned about, it had to be the dentist in the same strip mall, forget if he was actually good or not, not only is it close, it deletes the research time. When I make appointments at the various places, I can make them all in person all at once when I'm already there for something else and don't have to look their numbers up online and get distracted. The good thing is that I'm starting to get to know the people there, and it's fun to bump into them. Other than the doctors and church, sometimes that's my only time getting out.

A cancer lifestyle is so different than a normal lifestyle that it often leaves Andrew and I feeling very alone and isolated in our struggles, knowing that few can relate. Typically cancer occurs in older families, not 26 year olds. People our age celebrate their youthfulness by playing sports, eating a lot and staying up late at night. Andrew feels so different now than others because he can hardly do any of the things that people his age or any age do. No one knows what it's like to be on an endless fast, getting nourishment without the satisfaction of enjoying a food's texture and taste, while watching everyone else take for granted a basic pleasure of life. As for me, most people think, "It's probably like having three kids, right?" Not really. It's like having a really really sick husband and two toddlers on top of that.

I already found being a wife and training two helpless little ones overwhelming, but when my partner and leader in it needed me more than they needed me, the kids took a backseat when it came to delving out the attention and time. As he puts it, he can barely feed himself, he has such little energy.

Imagine the doctors telling you that you would most likely lose the love of your life and the father of your children. I believe that the length of Andrew's life is in the hand of God alone, but He has given me the stewardship of caring for my husband's life. I've always had a hard time understanding the nuances of the relationship between God's sovereignty and my responsibility. I mean, if I never fed my children, I couldn't blame it on God if they starved to death. I feel very much that if anyone's going to give Andrew the possibility of surviving his poor prognosis, in one sense, I feel it relies more on me than on all his doctors. And yet, anything I do or don't do is all in the sovereignty of God and any wisdom or strength I have to take care of him is all by the grace of God. One thing I do know is that God calls me to be faithful with this responsibility.

And so my first priority is to nurse my husband back to health and stay on top of his healthcare, but the children and all their needs are the same as they were back when those in themselves were overwhelming. Like I said, it is like having a very sick husband and two toddlers on top of that.

In lieu of support groups that people with cancer or other situations go to, we find ourselves drawn to a couple of blogs of young Christian widows and widowers of cancer victims that people have sent us links to that we occasionally check. It's excruciating to read their stuff, but when I feel loneliest, or I'm just concerned for how they're doing, I can't help myself. I always come away sobbing, even if what they wrote may not seem particularly sad to other people. I guess because I feel like I can relate so much to what they are saying. I read this man, Rupert's blog this afternoon, who's wife in her early 30's passed a way about two weeks ago. He wrote that she had told him a month or two before she died that no matter what he did or didn't do, she never wanted him to feel guilty, as if he should have done something differently. I cried and cried at that. I feel guilty every day all the time.

If Andrew calls a doctor, I feel like, I should have done that for him. It's my fault. If I had been on top of that, he wouldn't have had to do it himself. It's so hard for him to communicate, particularly on the phone. If I'm late in making his food and he has to eat his hospital formula, I feel like, Why aren't I on top of that? It's my responsibility that I give him every advantage possible to rebuild his body. The week he finished treatments, he wanted to help out by feeding himself all his meals, not relying on me to inject his food when he's too tired. The next week at the doctors, we found out he lost nine pounds. I was horrified and felt like it was completely my fault by not making sure he was still injecting all his food. One comfort is that I found out at our last doctor's appointment that his body is using up so many calories to heal that it's nearly impossible to give him enough calories. And that rather than feel guilty that he hasn't gained any weight since ending treatments, the fact that he hasn't lost any weight since the 9 lbs. is already exceptional.

I also feel guilty all day about my kids. I feel guilty that quality time together sometimes consists of sitting on my lap during a doctor's appointment. Or reading the Bible to them sometimes is playing a Bible CD on the way to doctors' appointments - and that's if I remember to press "play". I feel guilty that sometimes it's so hard to concentrate on them and I'm distracted when Gracie's "date" is to come alone with us to the doctor's, because we have someone to watch A.J., and she asks me a question about the construction workers next to the hospital parking structure, and I'm too preoccupied to even answer. I want to enjoy every moment with them as their childhood slips through my fingers, and yet I wasn't even paying attention during a rare opportunity she had to have the attention not shared with her brother. Gracie wasn't even one year-old when Andrew first got cancer and now at 2.5, she initiated trying to potty train herself with the help of her brother. I play no role in it.

So much of the cancer battle is mental. This is a marathon, but we are sprinters. This is a marathon and the finish line is unknown. The mental battle is fierce, but I am mentally, emotionally, spiritually, physically worn out. These two months since Andrew finished treatment have been the most difficult of all for me. And I feel guilty that I am worn out, because then I can't be upbeat for my husband or very much of an encouragement to him.

And then I feel guilty for feeling guilty, because I'm supposed to believe and rest in the gospel that, "There is therefore now no condemnation for those who are in Christ," and "If God is for us, who can be against us?" But I hardly know my way out of my guilt or how the gospel applies in this situation. So all I am left to do is cry out, "Rescue me, God, because I don't know my way out and my mind is spinning and I can't think and I know I'm behind on so many tasks, and my kids need to eat and so does Andrew, and I need to call the doctor, and I can't think enough which to do now."

In 2 Cor. 1:8, Paul says: "We were under great pressure, far beyond our ability to endure..." And he said, "But this happened that we might not rely on ourselves but on God."

I may not know what is going on right now, and my mind may be a whirl, but I find that in the midst of my tears, the Lord begins to reassure me He is good and He is faithful, and still very much with us. And while I sometimes feel like I never imagined God would let us get as low as we sometimes have found ourselves, I know He is still merciful, my understanding of His mercy was just insufficient.

15 The eyes of the LORD are on the righteous,
And His ears are open to their cry.
16 The face of the LORD is against those who do evil,
To cut off the remembrance of them from the earth.

17 The righteous cry out, and the LORD hears,
And delivers them out of all their troubles.
18 The LORD is near to those who have a broken heart,
And saves such as have a contrite spirit.

19 Many are the afflictions of the righteous,
But the LORD delivers him out of them all.
20 He guards all his bones;
Not one of them is broken.

21 Evil shall slay the wicked,
And those who hate the righteous shall be condemned.
22 The LORD redeems the soul of His servants,
And none of those who trust in Him shall be condemned.
- Psalm 34: 15-22

Verse 20 is a prophesy of what would happen to Christ. And so these verses of God promising to deliver and to hear the cry of the brokenhearted apply to Jesus too, even though He suffered and died. So suffering and death does not mean God has forsaken or been unfaithful. What a comfort to know that Jesus preceded us in all our brokenheartedness and suffering. How it makes it easier to bear and makes one feel a Comforter can be found in Jesus.

I have seen His faithfulness in very concrete ways as well. About a month after Andrew finished his treatments, a month in which he was sicker even than he had been during his treatments, I was so burnt out, I felt totally ineffective, could hardly think, was confused most of the time, and hardly knew what I was doing, except that I knew Andrew needed to eat and the kids needed to eat. I didn't know what our needs were or how to meet any of them. But the Lord allowed someone to know.

A friend from our old church in Washington had her best friend in Canada send her 15 year-old daughter, who is the oldest girl of nine children, come to help us for 2.5 weeks. The Lord dropped grace from heaven by bringing Grace Lindeman to us. She was indefatigable and happily did anything I asked her to. She fed the kids all the more involved breakfasts and healthy meals I had been feeling anxious to feed them, but hadn't had the time or mental capacity to invest in. Every time I thanked her for her help, she always found something to thank me for: "No, thank you for letting me come," or whatever else she could think of. She was my friend, a great listener, and brought out the laughter and youthfulness that seemed to have faded away in me.

I was still very busy while she was here, running errands, calling doctors, doctor's appointments, helping Andrew, but my kids got better care and Grace Lindeman always encouraged me to take the breaks I needed. She said, "I came here to help. So that you could take care of the things I can't take care of, like talking with the doctors, and so that you and Andrew could be free to leave whenever you need to."

While she was here, Andrew began to feel a little better, so I snatched what probably would be our one opportunity for awhile for the two of us to get away for three nights. The Lord provided a spa for us, Sundara Spa, three hours away with a kitchen in our room, so I could still make Andrew's juices and give him all his foods. When Andrew had started radiation and chemo in May, I had lost my appetite. Food lost all its flavor and appeal to me and I ate my three daily meals only at of obligation to stay well enough to take care of my family. But my portions grew smaller than they used to be, and I sometimes forgot to eat a meal here and there. The spa, however, pampered us. So it was there that I re-learned to eat large meals 3-4 times a day and even to snack, as they served healthy meals and had all kinds of healthy snacks and drinks all over the grounds. Surprising, even though the food was so healthy, in three days I gained back the few pounds that I had lost in the months since Andrew's surgery in March (although I think I would be much healthier if I could gain another 10 lbs., which is nearly impossible for me...even though I know most of you don't want to hear that, I am finally sharing that because I need prayer for it.)

Andrew still slept much of the time we were there, and I had a hard time shutting off my brain. If he was sleeping and I was swimming in the pool, I kept worrying if he needed me or had had enough to eat yet. Since treatment had ended, he had been on no particular meal schedule, because it had become too frustrating for him to sit with us at meal time and watch us eat, he sometimes slept through his meals, and sometimes his stomach hurt or he felt too nauseated to eat anything when it would have been about time to eat. Our last day at the Sundara Spa, I told Andrew that I still felt like my brain was on over-drive and I still was having a hard time de-stressing. He said, "Well I feel like I relaxed here." I responded, "Well then that's all that matters." After he said that, I felt like I was finally able to unwind. By the time Grace Lindeman left two days later, I felt like I had regained a little bit of my mental capacity, and with that could begin figuring out more ways we could continue to cope with this lifestyle. What a blessing and encouragement she was to our family, bright sunshine amidst the storm.


Physical Therapy

As for other updates, since Andrew's treatments ended, we have been praying that his jaw would heal, because the doctors were concerned that the radiation had killed it. But we finally met with the oral surgeon for the first time last week, and he said that it is too soon to tell, and it is possible the jaw still may heal partially or even completely on its own. He does not recommend hyperbaric oxygen, a prerequisite to surgery, because he says cancer feeds on the same things our bodies feed on, so he is fearful that the oxygen could feed any residual cancer in Andrew's body. He also wouldn't want to do any kind of surgery so soon, because of the risk that Andrew wouldn't heal from it in his extremely damaged and weak state right now. That's totally how we felt about surgery. So that is a relief that we don't have to worry about those treatments right now.

Since they have been fearful about Andrew's jaw, Andrew has not been allowed to chew anything. So any progress Andrew had made consuming food through his mouth has been halted until further notice.

Andrew will start physical therapy in Edina twice a week and speech therapy in Minneapolis three times a week for about six to twelve weeks next Friday, Aug. 22nd. Originally, the speech therapist was skeptical that he would be able to work on swallowing with Andrew. He tested Andrew the other day, and he was surprised that when Andrew drank water, it didn't go into his lungs ("aspirate"). Fluid in the lungs would put him at risk for pneumonia, in which case the speech therapist wouldn't have even attempted to work with him on trying to swallow again.

(When Andrew would consume things through his mouth after his surgery, he wasn't using his swallowing muscles. He just tipped his head back and flushed the food down his throat with a lot of water) .

So those are two prayers that perhaps God is in the process of answering. But we must keep praying that Andrew's jaw would heal completely on its own and that he would be able to learn how to swallow again.

And of course, please pray that Andrew would be cancer-free permanently.

Oh, and I always forget to ask for myself, which may be why I'm having such a hard time. Please pray for me that the Lord would strengthen me mentally, emotionally, spirtually, physically to be able to persist in meeting the needs of my family.

"On [God] we have set our hope that He will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."

- 2 Corinthians 1:11

I can't think of an acronym, but the letters start with JSCG. To sum up:

1. Jaw heal completely

2. Swallowing restored

3. Cancer-free forever

4. Grace - mental, emotional, spiritual, physical refreshment and strength for me to persist. And to gain 10 lbs.

Bee Bee Es

ANDREW WRITES:

For one week every summer many churches have a program called Vacation Bible School, "VBS", or, as A.J. and Gracie call it, "Bee Bee Es".

Our church, Redeemer Bible Church, held their VBS program last week for ages 4 and up. AJ is only 3.5, but they said he could sign up anyways to give us a break (well, cause we left the kids and went on vacation for three nights). I was praying that AJ would take this opportunity to step it up to the next level in maturity and start being a big boy rather than a toddler. When we heard the reports from the VBS teachers about how AJ was such a good boy in the 4-year old class and obeyed the teachers and was even one of the kids that was really fun to be around, I was so happy for him.

Sam Jay would take her kids, pick up our nephew and nieces, Noah, Zoe, and Joy, and then come to our house to pick up A.J. every morning. When we returned from our vacation, Grace asked Zoe, age 10, lots of questions. "Where did A.J. get that Spiderman backpack? How did he get tickets? Memorize verses? How did he do that?" We learned that Zoe helped A.J. memorize his verses in the car, which he then won tickets for. With a little help from Zoe and Joy's tickets, A.J. was able to redeem a Spiderman backpack with his tickets. That was so A.J.! A backpack that was Spiderman. We also learned that little red-haired Frankie Beck, age 5,who was in A.J.'s class, also took him under his wing and always tried to show A.J. the ropes. When Sam arrived for A.J. on Friday morning, the first morning we were back from our vacation, we opened the door to the truck, and everyone was like, "Hi, A.J.!" He was just like one of the group. With the big kids!

On the last day of VBS they invited the parents to stop by at the end for a lunch gathering, so Grace and I went. I was so glad to see AJ so excited and happy and being himself among his peers. Despite having to go through cancer these past two years with our family, he's still carefree, happy, and maturing. It is natural to think that cancer is an unfortunate setback in our lives with negative consequences for our poor children. Sometimes, Grace and I are afraid that our children are missing out, because they don't get all the attention, training, and opportunities other kids their age get in a family that doesn't have cancer. Instead we have seen that God is blessing our children's growth more than we could have imagined. It just goes to show that we can't take the credit for our children's progress. It is the Lord who builds our household, with or without cancer. Praise God for always answering our prayers to provide for them in all the ways that we can't!

Psalm 127
Unless the LORD builds the house,
They labor in vain who build it;
Unless the LORD guards the city,
The watchman keeps awake in vain.

It is vain for you to rise up early,
To retire late,
To eat the bread of painful labors;
For He gives to His beloved even in his sleep.

Behold, children are a gift of the LORD,
The fruit of the womb is a reward.
Like arrows in the hand of a warrior,
So are the children of one's youth.
How blessed is the man whose quiver is full of them;
They will not be ashamed
When they speak with their enemies in the gate.

Picking up the pieces

When things fall apart in life I'm usually shaken up a little bit and I grab the few broken pieces of my life and try to fit them back together in a new, improved way. Our first battle with cancer was a walk in the park compared to this. We were able to pick up the pieces of our lives in just a few months and return to normal. This battle with cancer has been so intense and life changing that it's almost like everything was disintegrated. I feel like there are no usable pieces to grab and put back in place.

So now I feel like I'm rebuilding my life from scratch. It is hard to explain but I just feel like I'm starting my life over. Trials are like a fire that melts a piece of metal, burns away the impurities and leaves a more refined end product. Cancer is doing just that. I'm begining to see everything in a new way. A new way of being a husband, father and brother. A new way of seeing my career. A new way of seeing my gifts and talents and how I can use them in this world. But above all I see my wife in a whole new way after all this.

For the past 4.5 years I've been married to a wonderful, beautiful woman. In the past 4.5 months I've seen this 28 year old woman step up to the greatest challenge I could have imagined. To watch your husband practically almost die from multiple surgeries and complications, then nurse him back to life. Then, try to actually keep him alive while the doctors try to kill him with chemicals and radiation. All while managing phone calls, doctors appointments, my blood tests and nutritional intake through my feeding tube AND raising 2 toddlers at the same time. And most importantly, she tried to keep me laughing. And when I wasn't laughing she was speaking the truth to me in love to bring my mind out of the gutter.

I clearly remember those late nights when she would wake up to me puking my brains out then hop out of bed and get me water or medicine or make me chamomile tea, and when I was feeling like giving up and she would tell me about all the wonderful things I have to live for. Or when I came home from the hospital and she would put on latex gloves and clean all my wounds and change my bandages with the utmost care. She just watched the nurses each day at the hospital and learned how to care for my wounds. Or how she would always teach the kids to be gentle with Papa's "ouwees" and explain to them why I had a tube coming out of my nose. She would rent comedy movies for me and make sure I wasn't watching any depressing WWII documentries on TV. And the list goes on and on and on and on. And she did it because it made her happy to. I've never taken care of Grace or anybody like that. I'm actually quite the opposite of that, lazy and uncompassionate towards others. What a precious jewel Grace is.

Pray for me as I seek repentance and change in this area of my life. I so want to be a more caring, compassionate, and understanding person . God is really working on my pride, self reliance and laziness through this trial. Though I feel guilty I know that God forgives me and Grace forgives me. Thank you Jesus that my life is not built on a foundation of good works, good looks, health, or money, because then I would be a complete failure and destined for hell. But my life is built on the firm foundation of the blood of Jesus which washed all my sins away forever. Amen!


Matt 7:24-27 Jesus said:

"Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock. But everyone who hears these words of mine and does not put them into practice is like a foolish man who built his house on sand. The rain came down, the streams rose, and the winds blew and beat against that house, and it fell with a great crash."

A little Peace

Grace and I hate going to the doctors nowadays because the news we get is usually unfavorable. Today, we had two appointments. The first was with our radiation doctor, Dr. Lee, and the second was with my surgeon, Dr. Yueh. Dr. Lee didn't have much to say other than that things seem to be healing slowly, and the tissue is very sensitive still so I can expect it to bleed easily. So coughing and spitting blood still shouldn't alarm me too much.

When we visited Dr. Yueh we told him that we've been having trouble getting an appointment with an oral surgeon to look at my jaw. It has been almost 3 weeks and they finally called us back yesterday to schedule an appointment with some other new doctor, because the experienced doctor we were referred to happens to be the University's director of oral surgery and was too busy. So Dr. Yueh said he would call the oral surgeons and take care of things for us. We just received a phone call from Dr. Yueh and he told us that he called the oral surgeons and the doctor that we were originally referred to is now going to make time to see me on Monday! Grace and I were just commenting on how we feel so taken care of by Dr. Yueh and his team, even though he is extremely busy as well being the director of the University's head and neck department. All the other doctors just kind of brush by us and aren't compassionate or very helpful. But Dr. Yueh and his team always bend over backwards, and they make everybody else bend over backwards as well to help us. It's so comforting to be under his care. It's not like his compassion and help are going to change my prognosis or make things less painful or difficult. It's just that there is something so comforting about knowing that somebody is looking out for you. So in the midst of difficulty one can find some peace.

This example today reminds me of how our heavenly father cares for us. In fact, one of the ways God is taking care of us and giving us peace amidst a storm is directly through Dr. Yueh. I always get worried and think of all the possiblities of things that could go wrong and worst possible scenarios. My worrying isn't going to change a thing. But then I think about how God has always taken care of us when we trust Him. Never has God said no to us and kicked us to the curb. Sometimes we have to wait, sometimes God answers in ways we didn't expect, but never have I felt like He doesn't care. Last year when I had cancer things were hard and not everything worked out the way we wanted it to, but in the end of that period of time things did work out well and I was good as new, and we even got to move to Minnesota! God placed it on our hearts to pray and beg for those very things and He answered. The fact that I know God is compassionate and looking out for my best interest is not necessarily going to change my prognosis, or make things less painful or difficult either, but there is peace knowing that God is watching out for me. Nothing can separate me from His love.


Romans 8:28, 38, 39

And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose...

For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord.

Esther update

Esther went to be with the Lord on Saturday. She's not suffering anymore. Perhaps she's dancing at the feet of Jesus right now. If you can handle it, you must read their blog (http://www.xanga.com/rupandesther). Please pray for those whom she left behind who are mourning, especially Rupert, her husband. I feel like I got to know them through the blog though we've never met before. Perhaps now I know how some of you feel who don't know us and are reading our blog. As you know, blogs are usually highlight reels of people's lives. If you read Rupert's blog you'll see that it only takes him a few hours to come up with a highlight wereas it takes 3-7 days before something decent pops out of me =)

Rupert and Esther

Esther has a very advanced brain tumor. I was greatly encouraged by their blog, and their love for the same Jesus that I love. Rupert, Esther's husband, has been lovingly caring for his wife for years now. I'm amazed at his selfless, tender devotion to his bride.

They go to the same church that I went to as a child in NJ (RCCC). Please please pray for them. Read more here.

http://www.xanga.com/rupandesther

Some pictures

I'm gaining strength each day. The pain in my mouth, neck and throat area has gotten a little worse and is taking a very long time to heal. Part of it is my jaw, and perhaps part of it is that some nerves were numbed from surgery and radiation, but are now starting to rejuvenate. Also, my rehab exercises cause me plenty of pain and some bleeding, but I have to do them. It is encouraging to see progress in a positive direction again and it gives me hope. Below are some pictures from the past few months that a never had the strength to upload and post.

The big Tomotherapy machine. They scoot me inside this thing for about 25 mins 5 days per week for 7 weeks. That plastic mask is very tight and uncomfortable.

The kids and I a few weeks after surgery.

The kids and I the day before my surgery. This was my last meal that I ate which was a Horseradish encrusted filet mignon at Wildfire in Eden Prairie.

Grace's 28th Birthday Party (May 10, 2008)

More of Grace's Birthday

My right arm. This is where they took skin, muscles and blood vessels to reconstruct my mouth. My leg has similar wounds as well.

AJ and Gracie playing in the sand box in our backyard. They're best friends!

AJ and Gracie picking wild flowers at the park near our house.

The context

Take courage, life isn't all about fighting cancer. I know many people have begun reading our blogs recently and may not know about our life before cancer. If you havn't already taken the time to read our life stories and the previous blog posts, please do. The past several months is only a chapter within the context of a much more interesting story - God's story. We praise Him for each and every day that He has given me, and each day that He will give me. God has already "written" my story, and I pray that I will be excited to see what God reveals to me each day. His mercies are new every morning.

Psalm 139:14-16

"I will give thanks to You,

for I am fearfully and wonderfully made;

Wonderful are Your works,

And my soul knows it very well.

My frame was not hidden from You,

When I was made in secret,

And skillfully wrought in the depths of the earth;

Your eyes have seen my unformed substance;

And in Your book were all written

The days that were ordained for me,

When as yet there was not one of them.

Our life stories (http://www.graceandrew.com/ click "Our Life Stories")

Our other blog entries (2005 2006 2007 2008)

Motorola

Motorola's stock price is so low because I haven't been working for the past few months. When I get back to work we'll all see a jump in the price.

A bunch of people from my Motorola office here in MN came to visit me Monday. It was so nice to see them and how much they care about our family. They even brought be a big card with a check from a fundraiser BBQ they had at the office. That money will definately go to good use since I'm on a reduced monthly income with disability insurance. Praise God for insurance, I don't know what we would do without it!

Anyhow, after my friends from Motorola came over I was wondering why there was such a sense of warmth of relationship when they were here. It was weird. Almost like family, but not quite. I havn't lived here or worked here for that long, so I don't know many of them very well. Perhaps it was a combination of things. For one I've been starved for human interactions outside of my family since I don't go to work each day so it was nice to have a group of people from work visit. Additionally, I don't expect people to really care that much about me and I'm always surprised when they do. I am so amazed at the kindness that people express to our family. It puts me to shame because when I'm healthy and even most of the time when I'm sick all I can think about is myself, and caring for others falls by the wayside. God is continuing to teach me to be more selfless each day.

Anyhow, thank you all so much for all the ways many of you have cared for my family. From praying, to babysitting and meals, to sending gift cards and money, to notes of encouragement and more. The Lord really provides for us one day at a time. It is such an exercise to trust Him and not get ahead of ourselves and start worrying about tomorrow. I went out for a short bike ride the other day around the lake near our house and I noticed all the birds and the flowers and was reminded of Matthew 6:25-34

25"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? 26Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27Who of you by worrying can add a single hour to his life?
28"And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? 31So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' 32For the pagans run after all these things, and your heavenly Father knows that you need them. 33But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

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Rough night

I was so tired last night that just laid down and fell asleep as Grace was putting the kids to bed. I didn't have energy to eat my last meal through my feeding tube, take my medications or do anything for my wounds. When I woke up a little before midnight i just felt so unmotivated, and cringed at the thought of dragging myself out of bed to do a whole list a things in my nighttime routine. I thought to myself, is this what life if going to be like? Constantly fighting pain and infections, and being hungry but dreading feeding yourself because it is so unsatisfying to eat through a tube in your stomach.

It didn't take long for my mind to spiral into a hellish cycle of worthless thoughts. Whats the point of fighting to live? Will life be satisfying ever again? Will I ever feel better? Will I ever eat or taste again? I'm a terrible, useless, husband and father...I just want to give up.

Thankfully Grace entered the room shortly after and I told her what I was thinking. She cried and said, "You can't give up, I need you. I need you! I married you so that we could grow old together. I need you, Andrew!" Grace then read to me from Romans 8 and I was reminded that this suffering is not about me, but about glorifying God. God has chosen me to suffer for His sake.

Rom 8:16-18
16The Spirit Himself testifies with our spirit that we are children of God,
17and if children, heirs also, heirs of God and fellow heirs with Christ, if indeed we suffer with Him so that we may also be glorified with Him.
18For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.

Grace then started going down the list of comments of our blog and reading them to me. I'm so amazed that our readers are encouraged by what we write. When others are edified through our suffering it gives me a sense of purpose. If we can help others be happier, especially happier in God then it is worth it. It doesn't make it easier, but it encourages me to fight on.

Please keep praying that there will be no more cancer in my body, that my jaw would miraculously heal and God would restore my speech and swallowing.

Turning the corner

It's Andrew again. During treatments I was too sick and unmotivated to blog, but now I'm doing a little better. Last week and the week before were my worst ever. I threw up every day and felt so sick and tired that I didn't eat much either. I ended up losing at least 5 lbs, maybe 9 depending on which scale you believe in just 1 week. Anyhow, praise God that I'm feeling much better this week, I gained back a few lbs!

This past weekend we decided to go to Grace's cousin Amanda's wedding in Wisconsin. I thought I would be too sick to attend the wedding, so I was just going to stay in the hotel room and rest. But on Saturday I felt so much better and was able to make it to the wedding and part of the reception! And praise God that I've been feeling a little better each day since then.

Just as I started to get some energy back and stopped throwing up all the time, the Lord provided a new challenge for us all.

It turns out that the radiation destroyed some of my teeth and most likely part of my jaw bone. This is called radio-osteonecrosis. They said I would have to do hyperbaric oxygen treatments and then pull some teeth. Most likely I'll additionally have to remove a portion of my jaw bone that we tried so hard to save during my last surgery.

Hyperbaric oxygen treatment is used to stimulate healing and increasing blood vessels. You sit in a high pressure chamber breathing pure oxygen for 1.5 hours five days a week for 6-8 weeks. You have to do a regimen before and after the teeth and/or jaw bone are removed.

If we do not remove the rotten tooth and anything else that might be infected, the infection will spread to the rest of my body and be another thing distracting my body from healing.

Some people question that if you stimulate blood vessle growth this close to cancer treatments, if there is still some cancer that hasn't finished dying yet, the blood vessels could provide more blood to the cancer, thus feeding it. Statistics do not show, though, that hyperbaric oxygen stimulates cancer growth and instead seems to only be beneficial.

If we end up doing all the treatments it would mean 12-16 weeks of hyperbaric oxygen and another major jaw/reconstructive surgery similar to what I did in March.

Currently, the doctor has given me penicillin and some antibiotic rinses to keep the infection at bay.

Please pray that God would heal my jaw and that the next scan will show that the bone has rejuvinated on its own (which may be a possibility) and that there are no infections. Please also pray for wisdom as to what treatments to do if any.

GRACE ADDS:
The good news:
- This new rotten tooth/possible dying-jaw condition is not life-threatening.
- Also, hyperbaric oxygen should not be toxic the way his previous treatments have been. There is a slight possibility that the hyperbaric treatment itself would heal his tooth and he wouldn't have to have anything else removed.

The bad news:
- We thought we were done with treatments and are very disappointed and totally burnt out to a crisp.
- If Andrew's jaw is dying, which we don't know yet, they would either have to replace it with a bone in his leg and some muscle in his chest. If we didn't want to do such a major surgery and just replaced his jaw with a metal one, he would be disfigured.

It would be horrible for him to go through another major surgery like that again and would be a major obstacle to his recovery. I feel like in order to get ahead of his cancer, we need to stop doing additional damage to his body.

Avalanche

About eight days ago, Andrew's mom left and returned to her home in New Jersey. It was our first week without her in a month and our first week after treatments ended. At first it seemed to be going well by God's grace. It felt like I was riding a wave, trying to breathe, and keep calm. Each day was a mad competition to stay ahead of the game, lest I fall one step behind and an avalanche collapse on me. Essentially, I function like a single mom of two toddlers/24-7 nurse.

Then Saturday Andrew took another dip into misery and utter exhaustion, and thus needed me even more. As a result, this week everything is clearly beyond me and everyone is a little neglected including Andrew.

One of the things that made a big difference when Andrew's mom was here was that if Andrew needed me, I could suddenly leave the kids and attend to him. Andrew had a special knock on the wall that he would do whenever he was calling me.

Now, if I suddenly need to attend to Andrew, the kids always happen to be eating one of their meals, and toddlers really can't be left alone while they are eating. If I run up to Andrew, something always happens so that Gracie always ends up screaming at the top of her lungs, which even from upstairs is ear-shattering and impossible to ignore. I am running up and down the stairs and nobody's getting the help they really need.

The worse off Andrew is, the more he sleeps, and thus the less he communicates. He is too exhausted to think about his needs, and so what he really needs me to do is constantly be contemplating what possibly could be his needs and how I can meet them. But anyone who has two toddlers knows that they are a totally distracting job from life, let alone distracting from someone who actually needs your 100% attention. I have always wished I could just sit at Andrew's bedside all day and just stare at him trying to scheme of ways I can not only help along his recovery, but be a comfort to him as well.

Please pray the Lord would provide the grace to take good care of Andrew. To have the wisdom and presence of mind to be able to keep track of what his constantly changing and fluctuating needs are, as well as the strength to stay on top of all the labor to meet his needs and the essential needs of our family.

Shockingly Soon

It has been just over one week since Andrew finished his treatments. Andrew was feeling pretty discouraged, as he said he felt worse than he had during all the treatments. He was very exhausted, sleeping a lot until Monday, making his moods very low too.

Worse than the exhaustion, though, was the area around his mouth. His voice each day has increasingly become more hoarse, making it harder and harder for him to talk. His saliva, thicker than any mucous, has been causing him to gag frequently and up until last Saturday was causing him to throw up. His skin has been peeling off his neck, yellow slime slicking around it. But his pain meds are so strong that there were times he would scratch himself and wouldn't realize he was making himself bleed.

At the same time, being on the outside, and not experiencing the physical suffering that he was, which I'm sure made the days seem excruciatingly long for him, I felt so hopeful. I could see his energy increasing with each day and we had all gone bike riding together again on Tuesday, which is always a good sign. From the outside, I had learned that despite the downward dips, Andrew eventually floated to the surface again.

Nonetheless, Andrew was still in the depths. Andrew didn't feel human, he's been through so much suffering, so different than the strong, exceptionally capable man he was. Seeing people in public made Andrew feel so different than them, handicapped. Andrew hadn't consumed anything through his mouth in weeks. And he feared this was his life.

Yet. Last night, I felt hungry just as I was about to go to sleep, so I brought up a bowl of food to my room, thinking Andrew was still asleep, as he had retired a few hours earlier. When I arrived there, though, he was awake. I figured he wouldn't mind me eating, though, because he always sits with us during our meals anyway. I had a bowl of Indian food, Palak Paneer, which is basically a thick spinach sauce with tomatoes and spices. I had added too much water to the new brand of brown rice we had, so it was really soft. On top of the Palak Paneer, I had put yogurt to tone down the spicyness.

"That smells so good," Andrew said.

"Oh!" Whoops. "Wanna have some?" Why did I just say that?

"Fine...I'll just try some." I handed him my bowl. He took a spoonful, put it in his mouth, and made the motions of chewing, slowly. I had never seen him chew since before his surgery. He finished a spoonful.

Apparently, the sauce, over-soft rice, and yogurt was perfect for making it easy for him to eat.

I began to tear up.

"Is there more downstairs?" he asked.

"You can just have the rest!" I said.

He ate the whole bowlful. "Mmmm. That was so enjoyable," he said.

"Babe, you ate an entire bowl!" I said. I was tearing up more and truly was shocked.

He said, "It was really only five tablespoons."

Five heaping tablespoons. "You haven't eaten one teaspoon of anything at all in weeks. You're not even supposed to be able to eat at all through your mouth. And you're supposed to be worse off than ever right now."

"I didn't really eat it, I flushed it down with a lot of water. Course it was the most amount of food I've eaten in weeks," he said.

Exactly.

We prayed together to thank God for answering my prayer request that he would be able to eat a meal shockingly soon! Thank you for praying!

"For this reason I bow my knees to the Father of our Lord Jesus Christ, from whom the whole family in heaven and earth is named, that He would grant you, according to the riches of His glory, to be strengthened with might through His Spirit in the inner man, that Christ may dwell in your hearts through faith; that you, being rooted and grounded in love, may be able to comprehend with all the saints [believers] what is the width and length and depth and height— to know the love of Christ which passes knowledge; that you may be filled with all the fullness of God. Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen."

- Ephesians 3:14-21

The Aftermath

Andrew finished his last radiation last Thursday, and we are so grateful. They always say, though, that he's supposed to get worse until two weeks after the treatments end, which seems to be the case.

Please pray for Andrew as he is feeling terribly exhausted and has often felt nauseated. On Friday, he threw up his hospital formula.

Andrew always used to nap in the car on the way home from radiation and continue his nap in our backyard, so he could still get fresh air, whether he would have the strength to bike ride or walk later in the day or not. So today since Andrew was feeling so exhausted, instead of walking, I drove us all to the park, and Andrew took a nap on some grass in the shade, while the kids played in the lake and the playground. Now we are all going to my sister's so that while the kids nap there, Andrew can nap somewhere different or watch a movie there. Gotta go!

Bike Rides and Sorbet

GRACE WRITES:

Praise God that today (Tuesday) Andrew received his last chemo treatment! I feel so grateful to the Lord for getting us through the past 6.5 weeks. Only two more radiation treatments left! Praise the Lord!

I want to thank all of you for the comments you left. Andrew had not been keeping up with all the new ones for the past couple of weeks. Tonight, he read some of them. Afterwards, Andrew updated the group at our prayer-for-him at our house that he didn't realize how discouraged he had been feeling until he felt so encouraged by reading your comments tonight. He was deeply moved by the things you wrote, seeing how much God truly is at work.

So keep the comments coming!

I think, too, that many of you must have been praying for us after I wrote that update on "Five Weeks of Treatment Down." Because last week a lot of the things I had written that weren't going so great went well last week. For instance, Andrew didn't go through a Tuesday night dip into misery that normally lasts 3 or 4 days. He started feeling good on Sunday and it lasted until Saturday! As a result, he was able to go bike riding every day, which made him feel a lot better and also made his sleep much better. He said the biking relieved a lot of the soreness his muscles were feeling from sleeping so much, and it also stretched his neck because you have to look up when you're riding a bike. So even though he was up and about more, he felt like he was getting more rest than normal.

One day we went on a really long bike ride for a half hour (well, long relative to what Andrew can handle) together around one of the lakes near our house and then around the neighborhood. Later, I found out he would have gone faster [if not for me slowing him down=) (Hey, my default is to enjoy the scenery. It never occurs to me to be fast)]. Andrew had so much energy, he was talking so much, I can't even remember the last time he talked that much. Hearing from my Andrew made me feel like I had my old Andrew back.

When we were riding, he said, "Hey, let's take turns choosing which way to turn. Remember when we were dating and we were driving one night and we decided to take turns saying which way to turn?" We had had no destination that afternoon in California and figured our random turns would eventually take us somewhere fun. As we found ourselves at Dockweiler Beach, we decided our goal should be to make a bonfire without spending any money and without having to return home. So Andrew took me to a wood dumpster - which of course somehow he knew exactly where one was - outside a fenced building being constructed. Being that we were in Los Angeles and people are generally not outwardly rude, no one walking by made any indication of staring as we jumped in and out of a dumpster and loaded large slabs of wood into Andrew's car (It was very clean by the way. Only wood was in the dumpster).

Then Andrew took me to Seven Eleven to pick up some lighter fluid for $1 - okay we exceeded our zero budget - but it afforded us a free book of matches. Outside of Seven Eleven, Andrew grabbed a variety of free magazines to get the fire started. When we arrived at the beach, all the bonfire pits were taken, so we sat on the sand and watched an incredible sunset with pink and violet streaking the sky. Out of Andrew's mouth slipped that if someone asked him how things were going between us he would tell them how he had fallen madly in love. I didn't want him to tell me he loved me until he asked me to marry him, so I exclaimed, "What?" and he laughed, and said, "Oh just kidding."

Somehow me ruining the moment didn't ruin the moment at all. I think the New Jersey culture in us made us able to say really blunt or abrasive things or back and forth make fun of each other and it was all laugh-out-loud hilarious to us.

A few mintues later, a family finished their bonfire and waved us over to offer us their pit. That was so nice of them. And for $1 Andrew made us a giant bonfire.

Biking through our neighborhood of Eden Prairie also made me think about why we hadn't ridden bikes together in years. The last time had been a few days after I found out I was pregnant with A.J., and I was having a miserable first trimester. While we were biking, I had said, "I don't like bike riding. I don't want to do this anymore," which actually was news to me as it came out of my mouth.

And Andrew had said, "No, it's just because you're pregnant...And you're going uphill...And your tire is flat."

Yeah for some reason reason I rode my bike even though we both knew there was a hole in my tire.

When we returned home from biking last week, after dinner, Andrew said he felt like eating something soft like yogurt, but not yogurt. We just got this special juicer where on a certain setting if you put frozen blueberries in it, it comes out as sorbet. So I made some for Andrew and everyone, and not only was Andrew able to eat the whole bowlful, he said, "Mmmmm. That was so satisfying."

I was so excited and happy and praising God. Just that afternoon after a difficult attempt to eat an avocado, he had been feeling discouraged that he would never be able to enjoy food again, and yet here was a glimpse of hope.

In addition to biking together last week, feeling like I had access to my Andrew again, and him enjoying blueberry sorbet, Andrew never threw up those several days. Doesn't it sound like these surprises are the fruit of your prayers for us?

After last year's cancer, my aunt introduced me to a lot of books on nutrition. I skimmed them with a lot of skepticism. Then, Andrew's co-worker, who had oral cancer 25 years ago, told us about The China Study by Cornell professor and leading nutritional giant, Colin T. Campbell. This co-worker was diagnosed with radiation-induced cancer in his mouth shortly after Andrew completed his treatments last year, but this man's tumors began healing themselves simply by changing his diet a few months ago. No other types of treatment. Our ears were perked. This was no infomercial. This was someone Andrew actually knew in real life and accomplished what he claimed. And it was the type of cancer directly related to what Andrew was going through. So we read The China Study and it was an epiphany for the both of us. It was the scientific evidence I needed and became the framework through which I filtered all the books I read about nutrition. I read this book only weeks before Andrew's diagnosis.

And so, I went back to the books my aunt had given me and read them more carefully. My aunt has been really into nutrition for years and since her husband is a doctor, she also reads his medical journals. As a result of all I read, after Andrew returned home from the hospital in April, we started him on an intensive nutritional diet, including about 8 cups of fresh carrot juice with beat, ginger, garlic, leafy greens, etc. each day and homemade formula made from real, healthy foods that included the calories, fats, proteins, and fiber he needs. I love juicing for Andrew, feeling like every cupful is like what I thought medicine was as a child, rather than masking symptoms, it truly heals his body. Often, when I'm juicing I find my heart exulting in worship of God, who does all things excellently and mercifully created food that is so healing and nourishing to our bodies.

My hope is not in nutrition, just as it is not in doctors. My hope is in God and God alone. But I believe God usually works through means nowadays. When someone drives to work, God provided the means for him to get there - a car, a ride, etc. But it was the Lord who provided that car and it was the Lord who made the car work, and it was the Lord who got him safely to work. In the same way, I believe that if God provides the means, a doctor, nutrition, etc. to heal a person, it's because God has provided those means. Sometimes those means work, sometimes they don't. Sometimes God makes something not work when it should have, and sometimes God makes it work better than it should have. Sometimes He just plain miraculously does something that no one can explain. Either way, it's because God made it do what He chose to do. Either way praise God because He is sovereign and has dominion over all things and all things are from His hand.

I always run the nutritional things I'm doing by our radiation doctors. They have actually been very supportive and have encouraged us to continue to do it, saying it's supported by studies. Nonetheless, when Andrew and I committed to radiation and chemo, we agreed that to make it through, if Andrew couldn't tolerate the natural stuff I made for him anymore, he would have to resort to the hospital formula.

As the chemo further depleted him and things like his hematocrit would go down making him anemic, I would do things like add lots of spinach to his juices to compensate, and things like that were really working. But as he got sicker and sicker, more and more formula started to replace his normal foods. By week 5 of treatment, it got to the point where sometimes he even threw up the hospital formula.

I began feeling nervous about increasingly not being able to give Andrew fresh juices and homemade formula. I was concerned that as he got more and more nauseated, and thus had less and less of the nutrition I wanted to give him, he would continue in a downward spiral of sickness and worse and worse health.

Well, since he didn't feel nauseated last week, he was able to tolerate tons of juice, as well as the homemade formula. I made the juice much simpler than before and only put carrot juice with broccoli or celery. He said the fresh carrot juice soothed his stomach and gave him loads of energy, which then allowed him to exercise a lot. (Carrot juice gives you lots of energy, except unlike the lattes I so enjoy, it's extremely good for you and healing, even essential). So instead of a downward spiral, he went in an upward spiral of improvement. In fact, his lab results from yesterday show that for the first time since he started his treatments, he is not anemic, despite how after 7 weeks of treatment, he is supposed to be worse off than ever.

I went back today and looked at Andrew's lab results from last year, before we had read any of the books I had mentioned, and in August, two months after he had finished his course of treatments, he was still very anemic, more anemic than he had ever been this round of treatments.

Andrew for some reason felt nauseated this weekend. So this week I would really like to pray that the Lord would spare Andrew from nausea and that he would be able to get all the nourishment he needs.

I also really want to pray that he would be able to eat a full meal through his mouth shockingly soon.

Thanks so much for your encouragement and prayers. I don't think you all know just how much you help us through both of them.

Please continue to pray for our PLEES!