Saturday, January 31, 2009



Andrew is still here. We got a hospital-grade humidifier with a mask with an oxygen machine earlier this week, and he discovered that some of what was exacerbating his breathing problems was dried mucous. A cold has been going through our household and it's likely that Andrew got it too, but it wasn't obvious because his pain medications covered a lot of the symptoms. Before this discovery, it seemed like Andrew's breathing was getting exponentially worse each day and I wasn't even sure if he would make it to the end of the week. For that reason, Andrew's parents are now with us again. He says he still feels tumors causing swelling in his throat, but it's not increasing in size as rapidly every day as I had feared. Every day I wake up, look over, and see that he's still alive. I consider him living each day on a miracle now. Each breath breathed into him by God. But I suppose that's the reality that each of us live on every day of our lives, we just take it for granted.

So far, he has not gotten a trache put into his throat yet. We had figured that since his oxygen levels were still at a %100 and that his breathing had improved since getting the humidifier, he didn't feel ready yet to get the trache. There is the risk that he won't even make it through the surgery or that even if he does, will it even give him more time with all the trauma it will cause in exchange for the breaths, and will the pain be so unmanageable that he will be sedated to the point of it being like he's already left? Please continue to pray for wisdom for us, as he may still get the trache put in this Wednesday.

Please also continue to pray that Andrew (and the rest of us) will get good rest at night. He wakes often due to coughing, discomfort, etc. I spend most of the day in the room with him as he rests, feeding him his juices and the countless things that need to be done for him, trying to comfort him, and just be with my love. Grace Lindeman continues to make his 9 fresh juices, food, and various things. We continue to do the therapy.

My sister and Sam Jay took the kids a lot during the day each week. And now that Andrew's parents are here, they watch the kids. I miss the kids a lot, but at least I get to see them when I leave the room. By the way, my eczema has been clearing up, but please continue to pray that it will heal.

I can't explain the peace that God has given me through this time. I feel very literally as if His peace is guarding my heart. There are, of course, periods of crying when I think of my love being gone. The disappointment. How our recent 5 year anniversary seems to mean that we are practically newlyweds. Our hopes had been that we would spend the rest of our lives together. I had thought that knowing who you would spend the rest of your life with would seem scary and final, but found that the idea of spending my life with Andrew made me smile and feel relieved and excited. We had thought that our lives would be beautiful no matter what adventure life brought us, because we were together. Eventually, I pictured years down the road, a full, loud house teeming with kids, overflowing out onto the yard, the kids screaming as they played tag. I cry when I pause past our wedding pictures in the living room because they remind me of those hopes. We looked so happy and hopeful that day. It almost seems like we were fools from this vantage. Yet, those feelings of sadness, as pure as they feel, the pure feeling of sadness unmixed with other feelings, do not feel like despair. I cry and then when I'm done, I feel fine again. I know there is no other explanation except that the Lord is sustaining me with incredible peace that only comes at desperate times like these, where all else falls away, and all there can be is Jesus.

Don't think that I have spent the last almost year of this trial in peace like this. Trust me, there are times where I spent long periods walking in my flesh and not trusting the Lord, so deep in my flesh, I didn't even know it. I believe my peace now is due to all of you praying like crazy for me and and also that in unique times, times of emergencies, I believe God gives special grace to wives. It is His grace, definitely not something I have labored for.

I remember when Erik Greene from our church in Washington unexpectedly was rushed to the ER and was not expected to make it through the night. They did not know what had happened to him, except that he was not going to live. I could hardly think about Andrew who was about to go into his first cancer surgery January of '07, his surgery paling in comparison to Erik's situation. I was horrified at the idea of Erik leaving his wife and four children. I wept for three days pleading with the Lord for his healing. Erik survived the first night and spent the next few weeks in a coma. Despite the doctor telling his wife to unplug him after a few weeks, she continued to have unmovable hope. When I saw her, I couldn't believe the peace she had. Not only did Erik wake up from his coma, he's doing great today.

And so, I believe God has a special place for wives that are His, while those observing help carry the burden by taking the role of weeping and praying and maybe even having to suffer more grief than that of the wife for that time. So please keep praying for me, because the Lord is answering. I can feel you are praying for me, because this is definitely not of me.

Though Andrew's suffering is more than most anyone will suffer in their lifetime, and it may not feel or look like it, we all must continue to believe that God works all things together for the good of those who love Him, and that it is all for His glory (Romans 8). We must ask God to give us the faith to believe that. We can pour out our frustrations and griefs and questions honestly to Him, because they are no secret to Him, and only He can change our hearts.

"Trust in him at all times, O people; pour out your hearts to him, for God is our refuge." Psalm 62:7-9

Please continue to pray
- for REST at night especially for Andrew, but for all of us too
- that Andrew will be able to breathe easily and not need the trache. For wisdom whether to get it or not
- that the peace of Christ would guard our hearts, as well as his parents' hearts
- for a miraculous escape from death
- that our suffering would result in us knowing Christ more intimately (Phil. 3).

Saturday, January 24, 2009

A rock and a hard place...


We made it back safely from California last week and it was so great to be home. Everything went just as planned and we arrived home Friday night/Saturday morning a little before 1AM.

On Saturday we got things started with the Gerson Therapy and by early this week we were pretty much settled back into life in MN. I almost feel like we've been here all winter.

On Saturday we had a short open house for people to welcome us back and it was so encouraging and wonderful to see people again. I didn't miss the weather, but I missed the people so much and I was so happy to see everybody.

We've been so well taken care of since returning between our church and neighbors helping out and Grace L. from Canada doing much of the leg work for the Gerson Therapy for us. We also have a high school teenager from the neighborhood come several times per week to relieve Grace L. so she can get a break from the non-stop work.

The first few days this week I was totally exhausted from our trip home and spent 2-3 days straight in bed. By Tuesday I was feeling a little better and Wednesday I was good enough to get out and pay a visit to Dr. Yueh. I had been in contact with Dr. Yueh over the past several weeks regarding my breathing and the wound in my neck. I sent him pictures and he told me how to dress the wound while I was in California.

We knew this visit wasn't going to be a positive, exciting, happy one, so we asked Jason D. to come along for moral support and so we could have another person there to help us process the information they give us.

Basically Dr. Yueh's opinion is that given my difficulty breathing and the huge deep hole in my neck (click to see photo) which keeps getting bigger, my demise will likely occur one of two ways.

Either my breathing will continue to get worse until I gradually get to the point of suffocation, or the tumor invades the carotid artery, bursts it open and I bleed to death on the spot through the hole in my neck. To be honest, I was really hoping for something a little more pleasant but I guess that's not how the Lord has chosen for my cancer to progress.

Immediately after Dr. Yueh said that images started coming into my mind of me alone in my bedroom laying on my bed bleeding or suffocating to death. A look of despair in my eyes, arms flailing hoping to grab my wife's familiar hand, but nobody is there to comfort me. That would be a very sad situation, please pray that would not happen to me. If the Lord would have one of these things happen to me I would at least want Grace to be there to hold my hand as I go.

Since I'm already having trouble breathing suffocation is really a possibility and might not be that far away. To avoid suffocation I could have a tracheotomy which would place a hole below my Adam's apple with a metal tube that extends down my trachea a few inches to bypass the area where the tumors are pressing on my airway. I had this for about a month when I had my surgery in March.

It seems like this would be the right thing to do, but I'm extremely hesitant to do it because of the effect it would have on my quality of life. The hole in my neck extends to the spot where the trache tube would be placed, and that is the most painful part of the wound. When I change my dressing on my neck every day, even with all the pain medications I'm on, touching that spot will bring me to my knees wincing in pain. So the thought of placing a metal tube through that spot with a 1 inch square plate stabilizing it and rubbing my wound 24/7 just makes me shiver just thinking about it. Of course the doctors say that they could just give me more pain meds, but even if that did work, which is unlikely, I'll need so much that I'll be sedated most of the time. In addition, even if you cover the opening of the tube, there is still some air leakage around the hole in my neck so I might not be able to clear my throat well which will cause me to gag on my own saliva, and I may not be able to whisper anymore which my main form of communication right now. My gut feeling is also telling me that since my body rarely responds to invasive procedures and treatments the way doctors say that most patients typically respond (remember the 3 additional corrective surgeries in March, my jaw that never healed, prolonged pain and difficulties with my PEG tube and right leg skin graft site, and now the open wound on my neck), that this just isn't a good idea. Lastly, this is totally not as important and you might think I'm crazy for saying this, but it would be nice to preserve a little dignity during my last days on this earth. So these are all the reasons I could say no to a decision that seems like it should be an obvious yes on the surface. In fact, I really wish it was an obvious yes.

So I'm stuck between a rock and a hard place. Please please please pray for wisdom what I should do. Dr. Yueh is not at all pressuring me one way or another, but he wants me to make a decision by early next week so I can have the procedure done before the tumors make it too difficult to place the trache. Some nights I wake up every 30 minutes gasping for air because mucus has dried up in my airway and makes it difficult to breath. Other nights I breath easily and I'm not worried about suffocation at all. So its really hard to know just how urgent it is for me to do the tracheotomy. I know a lot of my reservations about the tracheotomy are fears and anxieties about discomfort and pain and God can take care of all of that. But I still just don't know if that is the right thing to do. All the docs thought a second course of radiation was the right thing to do, but it turned out that it didn't work and caused huge complications including possibly being one of the biggest contributing factors behind this wound in my neck. We've done everything the doctors said we should do, but it typically doesn't work out the way we were expecting. So, I feel very uneasy about this decision. Please pray for wisdom and that God would make it undeniably clear which direction to go and that I would not regret or complain.

As I mentioned some nights I wake up gasping for air, usually because I had a bad dream that caused my heart and breathing rate to increase. Tonight my dream ended with AJ and Gracie sitting on some sort of bench at a park looking longingly at the playground area but they had to finish their food before they could go play. So I guess they scarfed down their food and took off running towards the slides then another boy sitting right next to them jumped up off the bench and took off after them in nothing but a diaper. Yup, a toddling baby boy! I woke up tonight happy from this dream, not gasping for air, and decided to write a blog. I'm not superstitious or anything like that, but I can pray that my dreams come true.

Please Pray:

1) For wisdom about whether or not to do a tracheotomy. That I would seek God's glory in the decision rather than personal comfort.

2) That my wound in my neck and my breathing would get better and not worse.

3) For complete healing and pain relief.

4) That I would not be anxious about all the things that I need to do but can't do because I have little energy.

5) That I would see this as an opportunity to be to learn humility as one who is helpless than be frustrated about my disabilities. I can't drive, lift anything heavy or even make my own phone calls.

6) For Grace, my wife, and Grace L. that God would sustain them as they take care of me and the kids. There is a little bit of a cold just starting to go around our household, Gracie and Grace M. got it, so pray that the rest of us won't get it.

7) That I would really be able to continue to have lots of time with my wife and kids and that I would use it wisely. Pray that God would provide enough help during these times so that we can be free to spend more time together. It just seems like it doctors appointments and phone calls and medications, and wound dressings and all sorts of distractions so we passing by each other but unfocused. Tomorrow we're going to try setting a block of time each afternoon for Grace and I. Pray that other things wouldn't crowd into it.

8) That God would provide an alternative speech device SOON so that I can begin communicating more easily with others and especially my kids. My kids are really good at picking up my slurred whispers, but they can't read yet so they miss out on a lot. I can't simply sit with them with a pad of paper and converse with them.

Thursday, January 15, 2009

Pain in the Neck


Andrew hasn't been feeling well, so he hasn't been able to blog. So sorry for keeping all of you in such suspense.

Since Andrew's previous blog, Andrew's parents, brother, sister, and her husband were able to come out for the holidays and stay with us at the treatment center. The Stillings here at the treatment center let us have the whole place to ourselves, while they continued to perform the treatment for us. It was such a blessing and provision from God. Andrew was so happy to spend that time with his family. Andrew's voice slowly gave out while his family was here, but was at least understandable to me and the kids, so that I could interpret for him, if his family couldn't understand. Now, he can only whisper, and it is hard even for me to understand.

As soon as Andrew's family left, he became completely exhausted and spent most of the next eight days asleep in bed. Part of that was from him quickly increasing his narcotics dosages, especially the fentenyl, and part of it was just exhaustion from him being so active with his family. I have never seen him this exhausted before. I am so thankful that I can give him his juices and meals through his tube, because he truly could not have been awake enough to eat it himself if he had to do it through his mouth. Since Monday, he gradually has had a little more energy to get up during the day to at least go outside and take a nap, or nap in the living room.

Andrew has not been feeling well. He feels it is best for us to go home now. He was doing so well, but then a giant hole opened up in his neck towards the end of December, and has flung him back onto pain, narcotics, and misery. We are actually returning to MN on this Friday, via San Diego Airport (only direct flight on Sun Country Airlines available for that date). A couple from our church will drive the RV back.

Andrew says: "I'm in tons of pain and soreness which continues to slowly get worse. The pain meds unfortunately don't work that well for this type of pain. The best I can describe it is it's like my nerves ache from the inside and the pain meds numb the outside. So it's like this deep set pain in the core of my muscles and bones that I cant get rid of."

I do not know which will win out - the Gerson therapy or over-radiation, which is likely the main cause of his neck falling apart. The Gerson Therapy is most successful on people who have never done conventional treatments. So far, all of the patients that we have met over the past two months have never done radiation or chemotherapy.

Andrew says he feels like he is at a crossroads. Either this is the "getting worse before the getting better" part that Dr. Stillings kept warning about or this is the decline.

Dr. Stillings thinks that Andrew's analysis makes sense, and he continues not to give us false guarantees, but at the same time he still thinks that this all could very well be his body gearing up and fighting the tumors with all its got. He's always an encouragement to us, and helps us to keep on fighting day after day.

Dr. Stillings thinks the hole in Andrew's neck is the body's natural way of debriding the skin that does not have enough blood circulation from all the radiation, and that the hole will stop getting bigger once it hits viable skin. The hole opened up real fast in a week and a half. Since then, it has slowly gotten a little bigger. It is now about the size of his thumb in all three dimensions. It's awful, and I can't imagine how a person can be alive with a huge hole in his body, let alone in his neck.

I am praying that the Lord would provide a way to do hyperbaric oxygen therapy, what they use for burn victims and diabetics, who get huge holes in their bodies. There is research that shows that cancer cannot survive in an hyper-oxygenated environment. So in fact, hyperbaric oxygen is great for cancer patients in general. Some doctors, however think that stimulating blood vessel growth and circulation could cause the cancer to grow faster but in Andrew's case I think dealing with this horrific wound is worth that risk. I have been looking for alternative treatment centers that do hyperbaric oxygen in the Minneapolis area, as it is unlikely that a medical doctor will allow it for a cancer patient, but Google searches are never successful for me.

The narcotics, which tend to shut down autonomic functions and the swelling from tumors or the wound in his neck, causes andrew to wake up gasping for air at night. He does fine when he's sitting up, but if he's reclined at all, it bothers him. But he says he can't sleep sitting up because he gags on his own saliva. So sleep has been really hard for him.

As for me, my eczema has flared up 50 times worse than ever before in my life. It's possible that my body is doing the getting worse before it gets better thing that they say happens in holistic medicine, as I have been doing the Gerson diet with Andrew, only with less juices, or simply it's related to stress. I imagine it may be both. If one could die of eczema, I sometimes feel like it could be me. PLEASE pray that the Lord would relieve me of my leprosy.

At night is when I often have a sudden flare up into misery where my skin feels like it is on fire and I wish I could unzipper my skin and jump out of it. Medicines and creams that I had from my dermatologist that used to work are completely useless now. I drink over a gallon of liquid a day, and yet still, I wake up looking like I've been stranded in the desert. My skin soaks up lotion like I never put layer upon layer upon layer on. Sometimes, the lotion makes my skin even more itchy and I just want to leave it alone and not touch it. It's not food allergies, because I've already been tested for them, and I had been on this diet for over a month before this ever started.

My only relief has been to flee out into the night, taking A.J. with me as my protector, and to cry out loud to God. It's a quiet neighborhood, and so far no one has been outside to hear me. I pour out all my frustrations to God about everything and to rescue me from my skin. Between that, the cool air, heavy breathing, and the distractions of the cozy lights of the houses, by the time we return home, the burning has relented.

Waking when Andrew wakes and waking up due to my eczema throughout the night, sleep is extremely interrupted for the both of us.

The kids are the same as always. Going with the flow, playing together, and our consistent source of smiles. 16 year-old Grace Lindeman from Canada, who had helped us for a few weeks over the summer, has come to us again. She arrived at the treatment center last night to learn the therapy and so she can assist us on the flight back. Pray that the flight won't over-exhaust Andrew or be too terrible for him or my skin. Grace will be with us for a month to make all of Andrew's juices, foods, and other therapy-related things, while I try to find someone to hire to do the therapy in the mornings. I already have two teenagers who can do the therapy for us in the afternoons. I'm nervous to return to the icebox of America. Pray none of us get sick, because that could mean pneumonia for Andrew, which could be devastating.

It has been sooooo wonderful to be in California. For the first month it was as if God called a time-out in our cancer trial and we forgot about cancer and had the time of our lives. Andrew was on no pain meds, had energy, and felt great. It was so great to see so many old friends. You brought the old laughter and carefreeness back into our lives for a little bit. We will miss you all so much.

Thank you all for your prayers, concern, and concrete expressions of love.

Please pray for:
1. The hole to heal in Andrew's neck and for his body's healing
2. Pain relief
3. Sleep for the both of us at night
4. Healing of my eczema
5. That we won't get sick in MN