Saturday, January 24, 2009

A rock and a hard place...

ANDREW WRITES:

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.

26 comments:

  1. Hey Andrew, you guys have been such an encouragement to RuthAnn and I. With all the ups, downs, and constant state of apprehension, you're ferver for His guidance and His mercy continues to motivate us, as I'm sure many others.

    You're in our prayers, and with the latest post, we will add the need for wisdom regarding your breathing.

    Take care brother, and may God continue to hold you, Grace, and the kids in His loving arms!

    Dan Hoeglund

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  2. We've never met, and probably never will this side of heaven. But I want you to know that I've been reading your blog for a while now (thanks to Kim S. from your church). Tonight I wanted to write you and let you know what an encouragement you are. I started feeling angry with God when I read today's post. How could he let someone so young (we are the same age), go through things like this? But I was reminded of your incredible faith in Him. The glory that will be given to God through your situation, no matter what the outcome, is amazing. I am thankful for you - brother and sister in the Lord.

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  3. We are praying for you and your family, fervently. Your faith is a huge encouragement and you have moved us incredibly... you are in our prayers every day.

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  4. Hi Andrew & Grace. Thanks for the update. We are continuing to pray for you guys.

    -Steven & Angie

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  5. Dear Grace and Andrew,
    Know we are praying for you all and especially now with your decision for a trach or not. It is not an easy decision and so we bring it to our Heavenly Father with you.

    Clinging to Him with you,

    Todd and Julie and family

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  6. I haven't written too many comments, but read your blog regularly and continually think of and pray for you (I know Grace from UCLA). Agreement with others, your response to what the Lord has allowed in your life in His sovereignty has been an encouragement to me, and I will be praying for wisdom and more sweet times of fellowship with family and friends.

    Blessings from CA,
    Allison

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  7. we're praying for you too.

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  8. We're praying your dreams come true.

    Ben & Shaina

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  9. Me and the rest of us here at UCLA still have you in our prayers.

    God bless,
    Tae

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  10. Grace, Andrew, and Kids,
    We are praying for your strength, endurance, and even joy as you continue through this trial. You have been an enormous example and blessing to our family, though we've never met. We are praying that God's grace would be poured out upon you in amounts we cannot even imagine!
    Dave & Andrea Felcyn

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  11. Hi Andrew,
    I heard of you and Grace through some Grace Church/GOC people (I live with a few and you were brought up during our prayer meeting in the apt). My heart goes out to you and your family. I am praying for you. Although you may be labeled "dying" according to doctors or from a human perspective because of the diagnosis, I think you are very much LIVING and bringing God glory through this difficult time! Christ dwells in you, and you can't be much more alive than that!! Praise the Lord that no matter what condition we are in spiritually or physically, He does not let go, but continues to draw us closer to Him. May God bless you! Thank you for sharing your life and your faith with us!
    In Christ,
    Debbie Chi

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  12. Hi Andrew and Grace,

    This is Theo here...I had the privilege of meeting you a few weeks ago with Dennis and Randy. I'm praying for you and your family.

    I wanted to share that it turns out my senior pastor, Gerald Chao, knows you (Andrew) and your parents pretty well from his days in SF. He was reading your blog and shared it with me a couple weeks ago, when I connected the dots I told him I had the chance to meet you guys.

    Just thought you'd be interested in hearing that :)

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  13. Andrew...
    I was sorry to hear your news in the most recent post. Know that you are in my prayers and that the Lord does not allow us to bear more than we can handle! I know because of my own chronic illness and recently having major surgery. I know what it is like to struggle on a daily basis but can't even imagine what it is like to not be able to breathe on my own. May the Lord show what is best to do and know that I am praying for you and your family! May your fears not overcome you for God is above all things. Fall on your knees before Him and give it all to Him!! He is Mighty in Strength! Also, I am praying for your wife! I know what it is like to itch constantly and wanting to unzip yourself from your skin! I am highly sensitive to meds and medical tapes,etc that I must use for my urostomy and central line I have! It can drive you nuts! I have found Eucerin calming itch relief lotion to be helpful. It burns at first but after several minutes last for hours! Hope this helps! Much Love and Hope!
    Mindy Walker
    FBC, troy ,ohio
    Dennis Jamora's friend

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  14. Andrew, Grace and family,

    I have been following your blog for a while now and please know that you all have constantly been in my thoughts and prayers. The strength and faith that you have is truly beautiful.

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  15. Andrew and Grace,
    we are sharing in you burdens during this time. you have been on our hearts and minds throughout this day. even though we are all the way in senegal -- we are with you in prayer. thank you for the lessons you are teaching us about God. i am teaching on the book of job at this point at our bible college. i can't help but think of you guys--- except that you have a far better wife than job had. thanks for including us in your suffering --- thank you for being faithful!

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  16. Andrew and Grace,
    I am a church friend (Troy, OH) of Dennis Jimora who is praying for you and your family. I have been so blessed to follow your constant dependence upon God as you walk through this trial. He is our strength. I pray that today He gives you an extra measure of wisdom and strength to make your decisions. Thank you for your example, and may God bless you and your beautiful family. It is nice to see a picture of you all.
    Wendy Rochotte, New Bremen, Ohio

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  17. Dear Andrew, Grace, and family:

    I've never met you guys, but I've heard of your situation through Derrick and Paika Liu, who go to my church in Queens, New York. I've been paying attention to your blog and I just want to let you guys know that I'm praying for you! It's hard for me to understand exactly what you guys are going through, since I've never experienced it first-hand, but I know that God understands. So let's continue to trust in our loving and gracious God, who promised that goodness and mercy will always follow us =)

    - Venus Chui

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  18. Andrew and Grace,

    When times are at their lowest and there seems nowhere to go but down, God takes this opportunity to cast His glory on our pitiful souls and redeem us. It is only during our pitfalls of hurt, pain and utter humility that we have no where to go but up. In the end, God receives all the glory.
    Your strength and devotion to God has been such a wonderful testimony to me, my loved ones and my friends. We will continue to pray for you. We are only human, nothing more. It is not for us to understand God's plan or works. We were created to live it.

    God bless you and your family.

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  19. Dear Andrew and Grace,

    Wanted to let you know that we're praying for God's mercy and grace upon you in these difficult days. Your courage and faithfulness are an inspiration.

    Much love,

    Julie and Will Cohen

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  20. LORD - Please help Andrew and Grace. Please help them and encourage them. Please help them with all of these difficult decisions.

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  21. We love you all and are fervently praying for you and these requests. Andrew and Grace, someday I hope I can sit down in heaven with the both of you and explain in a way that I cannot do here on this earth, and tell you just how much God is using you in my life for His glory,. I love Him more because of your example and how you have glorified Him here on this earth. To know you haven't wasted it! I praise Him for you both.

    ~Kim S (RBC)

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  22. Although you do not know me, I have been following your blog for some time. I am so inspired by your faith as individuals, a couple, and as a family. Grace, you are an inspiration. I will be getting married in 4 months, and as I enter into my marriage, I hope to have even a fraction of the dedication, strength, and faith that you have shown to your husband! You are both very amazing people and I am praying for your family.

    I would like to share "St Theresa's prayer" with you:
    May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us.

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  23. thank you both for your continued faithfulness to the Lord.
    i remain hopeful for your eventual recovery, the way you survive so much trials & tribulations.
    Andrew, thanks for the picture of your neck lesion; it does not look as bad as i expected. there is no infection. there is an area of nice pink flesh with a lot of granulation tissue. it seems like the gerson therapy is containing the cancer, which we are praying will eventually be overcome. the Lord continue to bless you & your family.
    please use the infrared light therapy as frequently as possible.
    we love you. Uncle.

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  24. Hi Andrew,

    I just wanted to let you know that I will pray for you and your family.

    Janling

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