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.
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.