Tuesday, December 29, 2009
It is now 7:00 pm and we ended up having the chemo done in an Echo Cardio room. The hospital was full and I am grateful we didn't get sent home to come back another day. We got home around 2:00 pm. It is so frustrating and tiring. I feel like we are in this dance class and we have been shoved to the back of the room. We are still allowed to participate, but anything we get is because of the effort we put into it. I plan to get the cost of the hospital chemos vs. the doctor chemos and then attack Tricare after the holidays. I called our case manager and she is on vacation this week. So I will be patient, pray, and ask God to give me wisdom, tact, and discernment.
Mike is doing well and we are getting things together again. The house is on hold for the holidays, but I hope to get things accomplished soon. 2010 is right around the corner! Can you believe it? A new year... with great miracles! It is so odd that we have been on this road for so long now. It is still not routine, it is still tiring sometimes, but this road is filled with God. On Christmas Eve, we sang "O Holy Night" and a light just went off in my head and heart. The song had a new meaning this time. The portion that STILL plays in my soul is below:
Long lay the world in sin and error pining
'til he appeared and the soul felt it's worth
The thrill of hope
the weary world rejoices
for yonder breaks a new and glorious morn
oh fall on your knees
oh hear the angels voices
oh night divine
oh night when Christ was born
I will try to explain what this song spoke to me.
long lay the world in sin and error pinning - is cancer. Ugly, painful, and pining (which means an overpowering longing for someone or something) for it to go away.
til he appeared and the soul felt it's worth - this is the moment when Mike and I were prostrate in front of Him calling and He appeared and we were and still are overflowing with peace. The peace that everyone wants this time of year that they think is unattainable. Peace that comes flowing into you from the Holy Spirit even when life is not perfect, hard, or scary. It is from Christ
The thrill of Hope - these 4 words are so powerful. We walked for a short time without hope right after we were first diagnosed. But then, we truly experienced the thrill of hope. It is an excitement for the future and for things to come. God continues to give us the thrill of hope in big and small ways. The research that is being done where people are growing new esophagus's. In our situation, that is the thrill of hope!!
A weary world rejoices - we live weary. Mike is weary and tired. Weary to me means that you are worn to the bone but keep walking. We are worn to the bone with doctor's, insurance, medical whoha and everything that makes that up, but we keep walking and rejoice in the thrill of Hope for the future and small steps.
for yonder breaks and new and glorious morning - if we sit down and look, you can see it. That light that is just beginning in the east. We don't know what that light means, but it is always there. The light is Christ and his plan for us whatever that is. He has always been with us, is with us, and will be with us. He is our light in our future. That is all we need.
fall on your knees - Praise be to God. I actually get a visual here of myself on the ground. Thank you Jesus. Thank you for all you have done, all you placed in our lives, all the times you have answered our call and our needs. Thank you for giving us another Christmas together. Thank you for the support of family. Thank you for the path that you put us on that allowed us to meet all our wonderful friends all over the world. Praise you for all our Brothers and Sisters that have met our needs without even meeting us. You are the true LIVING God!
hear the angels voices - yes, I have heard them through many voices.
Oh night Divine - indeed. Christ's birth set everything in motion. His death fulfilled the deal and His resurrection sealed it! 2000 + years ago and here I am. Deanna. Walking. Saved. Hopeful. Full of Peace. Yes, Divine indeed!
Mike to gain weight - he is down to 131
Mike's healing to be complete on this earth
Return to Chemo in Dr. Khan's office and stay out of the hospital
Rest and family time
Praise - see fall on your knees section :)
Friday, December 25, 2009
I apologize for not posting sooner. It's generally my intent to post at least once per week, but I haven't been feeling very well. The last chemo really kicked my sorry kiester. I also have some kind of chest/sinus cold thing that is not helping.
Monday should be a blood check, check up with the Doc, and maybe an anti-angeogenesis treatment. Should not be chemo. Blood levels have been fairly good. However, I am still weak, with several waves of fatigue and nausea that come and go throughout the day. There is nothing new to report about the Tri-Care problem.
Deanna was channel surfing the other day and stumbled across 60 Minutes that had a segment about a new treatment. A man with esophageal cancer was given some new stuff called Extra Cellular Matrix (ECM) that allowed his body to grow a new esophagus. Wow! So I am beginning to see if I can get in on that. You can read about it here: http://www.cbsnews.com/stories/2009/12/11/60minutes/main5968057.shtml?tag=contentMain;contentBody
They are also using it to help vets who have lost portions of limbs in Iraq and Afghanistan to replace missing tissue. This technology could be huge.
All of the boxes after the move have been unpacked, although a lot of stuff is still in piles on the floor waiting to be squared away. I was able to convince my wife to slow down just a bit. And we switched gears to Christmas prep too.
We enjoyed a wagon ride with friends through an area neighborhood famous for its Christmas lights. We enjoyed cards from all over the world, including a packet with a pile of cards from our dear brothers and sisters at Fish Bayou church-brothers and sisters we have never met, and yet who have still adopted us and faithfully pray for us and send cards and notes frequently. We enjoyed several more stirring church services at FBC McKinney, two family Christmas gatherings, and to top it all off, the first white Christmas in McKinney that anyone can remember in years. So in between the waves of sick and tired, I can honestly say that I have been blessed this Christmas, and that I've enjoyed it.
God has been faithful. Each one of these things has indeed been a blessing more than my heart can contain. I'm still humbled by how good He is to us. Thank You Abba Yahweh; thank You Yeshua.
As Christmas draws to a close, I am moved to write about the closeness that our God desires to have with us. You can see it in Genesis when God comes into the Garden after the fall and asks "Where are you?" Of course God knew exactly where Adam and Eve were. After He stepped into the garden to see them, He wanted them to take the last few steps towards Him. You can of course see it in Exodus, when God chooses to put His personal living tent right in the middle of the Israelite camp. It wasn't until the Israelites panicked and asked Moses to make God leave that God went out of the camp and up on top of Mount Sinai.
When I was younger and wrestling, as I still do, with what it means to be a Christian, I asked for something simple that even I could understand. God answered that need and providentially led me to Micah 6:8: "He has showed you, O man, what is good. And what does the LORD require of you? To act justly and to love mercy and to walk humbly with your God." It's a short verse but vastly deep in content. But just take that last part. To walk humbly with your God.
Picture a journey that you are walking. But you are never alone. He is always right beside you. What happens to two people who walk a long journey together? They share the work, the joy, the sorrow, the pain, and they become fast friends with a bond that never fades. This is what our God wants from us, and He will come almost the entire way to us to make that relationship happen. He just wants us to stop hiding from Him, step out from behind the bushes, and take the last few steps to Him.
He wants this so bad, this relationship with us, that around 2015 years ago He came down from heaven, in the most poor and humblest of ways, to live among us as Yeshua, the Christ.
Sometimes I find myself saying "Lord...", and then I feel His presence near. And I realize that this is all I wanted at that moment, just for Him to be near. Not to pray for healing, or money, or wisdom, though I certainly need all those things. The first few times this happened, I felt sort of stupid, like I was wasting His time. So I started praying for whatever I thought wouldn't waste His time. But then, in that way He has of speaking to me without words, He said something like "It's OK. Let's just walk together for a while. We can talk about all that other stuff later."
This is the God we have-not only our mighty God, but also a faithful friend who is always near, a friend who can truly walk with us because He has been through a mortal life of struggle and pain Himself.
If you have not given your heart to Jesus, there is no better time than now. You can gain eternal life in Heaven as opposed to in hell, blessings so rich that you will be unable to contain them all, and perhaps the greatest treasure of all, a mighty God who will also walk beside you as your most valued and trusted friend.
As the song says, Come to Jesus-and live!
Wishing you all the very best of blessings in Christ,
Sunday, December 13, 2009
After chemo last Monday, I am just now feeling slightly human again. Which is a shame since we are back in chemo tomorrow and it will probably wreck me for another week. We may take some weeks off after this one. But I wanted to blog out a few things that have been on my mind since my last post.
The truth is that sadness has often overwhelmed me and I have often went back to God and asked him for all sorts of stuff. I have tried to pray first of all each time that firstly that His will be done, because that is how Yeshua taught us to pray both in the Lord's prayer and in his prayer in the garden of Gethsemane. But Yeshua also taught us in the parable of the neighbor who needed some food for an unanticipated guest in the middle of the night that we should be persistent in asking for what we want, too. So I ask. I ask a lot. I ask him for immediate miraculous healing, help with finances, and a myriad of other challenges, mostly for my selfish self, but also for an ever growing prayer list of others. After thinking about the one time we are permitted to test God according to scripture, I have added another one: Abba Yahweh, please give me the big blessing, the one you said I would not be able to contain. Please soon Father. I am still testing Him you see, but I hope in a much more reverent manner.
And a funny thing happened. I looked around through my chemo misery and realized I was in my own house for the first time in over a year. I was with my family and not in a hospital. We were putting up our Christmas tree together for the first time in two years. A group of our neighbor's kids, all girls, helped put up the tree. It reminded me of the girl gang that we had on Davis Monthan AFB that would hang out at our house on base-kids of all the USAF members who lived on our street. The sound of little girls laughing-music to my ears.
I basically broke down and cried like a baby. (I sequestered myself in another room for a while so as not to freak anybody out.) I asked God for the big blessing that I could not contain and He sure gave it to me. A blessing so big that my heart could not contain it and it burst forth with tears mixed of pain, joy, and thankfulness.
So, of course, I went ahead and asked Him for the next big blessing that I cannot contain.
It was time for Christmas Journey at our church. They put on a full live outdoor drive thru drama in the church parking lot depicting the life of Jesus. Deanna and Elizabeth acted in it, in a scene called the Teaching And Healing scene. My father in law attempted to drive me there, but the line was literally miles long. We aborted and they dropped me back off at home. I texted Deanna to let her know I would miss it, except for viewing it via web cam on the church web site, which only showed one scene. It happened to be hers.
And then He did it again, the big blessing that I could not contain. The church volunteers couldn't see the line so Deanna showed them my text where I stated that the line went around the church in central McKinney to well into the south side of town around the perimeter road of a town park of many acres. She did this just so they would know how many customers they had coming. But the volunteers did something amazing to reflect the love of Christ. They first offered for me to ride in the hay ride wagon, but she told them about how the air would bother my breathing (we are in a cold snap right now). Then they offered me to ride in the pick ups pulling the hay ride trailers, but that would leave my mother-in-law out, who is also a cancer fighter. So then they just let my father-in-law drive us both in through the hay ride route which by-passed the car line, eliminated the hours long wait that would have drained me and messed up my med/feeding schedule, and also kept us in a nice warm vehicle to protect both of our sensitive lungs from the frigid air. Those people bent over backwards so a couple of cancer fighters could get in to see the drama. And what a drama it was. 800 volunteers set up multiple scenes for three frigid nights because of their great love for Jesus. How much He was honored here. When I got home, the blessing was so big that I could not contain it. I thought about all those volunteers and how hard they were working for Jesus, to spread his gospel, under such austere conditions. I though about how harder it was for the volunteers playing Christ in several scenes, and how much harder still it was for the christian brothers and sisters playing roles against Christ, like the Sanhedrin, the Pilate and the other Romans, and even a someone whose role it fell to play Satan. Yet they all performed admirably, for the love of Jesus. And the volunteers who jumped hoops to make special arrangements for two cancer fighters who could have easily been written off and forgotten.. The thought of all the love was too much for my heart to contain, and the tears came again.
So I asked him again. God please send me the next big blessing that I cannot contain soon.
Well, we shall get blood tests at the clinic tomorrow and then, if everything looks okay, will proceed to the hospital to get chemo'd due to this latest insurance Tri-Care flap. We also just learned of a fascinating technology going to clinical trial soon where they may be able to trick my body into growing its own new esophagus. Just starting to research that one. Maybe it's the next big one?
I wonder what it will be?
Our pastor did a session where he told us about a scientist who had calculated the odds of Yeshua fulfilling just eight of the prophecies that He fulfilled. The odds were astronomical, a gazillion to one, so to speak.
In college I had a physics professor who was teaching Quantum Physics to a combined class of undergrad and grad students. He had a fabulous math background that made him good for this class, much more than your average physics academic. One day he showed how to use calculus to determine the probability of an electron penetrating an electromagnetic field which classical methods said the electron could not breach. It was about a gazillion to one. After that, in an off-the-cuff sort of way, he mentioned that this calculus could also be adapted to see the odds of a man being able to walk through a wall. I suppose it was a deliberate indirect reference to Christ. At the time, I was fully steeped in secular science and didn't believe in Jesus. I wasn't even sure I believed in God, though I suspect I did deep down. So I inferred the comment to mean something along the lines of "There is no supernatural, miraculous God. These things are just naturally explainable, albeit highly unlikely, results of scientific laws that we can discover, codify, and manipulate."
(If you really must know, quantum physics is able to describe physical particles that make up everything around us as having a dual nature, both as traditional particles where classical rules apply, and as waves where all sorts of magic can happen. Each particle, using a special part of math called Fourier Transforms, can be described as a sum of an infinite number of wave patterns. When you combine all the waves, you can make them cancel each other out everywhere except where the particle exists, giving you your particle. But because the waves get to play by different rules, you can also modulate them in time to cancel each other out and disappear the particle on the encounter side of a barrier, only to recombine and reappear the next instant in time on the other side of the barrier. Now, doesn't that sound just like Jesus to turn all the old rules upside down to do something completely new? The math is exquisitely beautiful and exquisitely difficult at once-at least for me it was. I barely passed the class even though I loved it dearly.)
We have to be careful when we use these numbers to talk about faith. Believers say "The odds are a gazillion to one, so this must be an authentic miracle and support for Christ." But the secular scientists say "It may be a gazillion to one, but it's not zero. Jesus was just like the millionth guy to pull the handle at Vegas and get lucky. He was in the right time and place. There is no real miracle here."
At the end of the day, I believe that Yeshua deliberately made these probabilities very small but non-zero. He wants your heart, not your calculator. So in the end, everyone considering the question of Yeshua must make their personal decision based on faith, not on numbers. There are all sorts of things in science that point the way to Jesus, and they can be great tools to strengthen our faith and even to evangelize. But we will never "scientifically prove Christ". I don't think He wants a bunch of converts who are there because human science was able to support him. He wants our hearts, so He has deliberately gamed the probabilities so that yes, there is still a very very small scientific probability that He is not God. We must search deep in our hearts to hear and follow his voice based, in the end, on faith. Those tiny scientific probabilities support His truth far more than the horrible alternative, but they don't provide the final answer, which must come, by design, from a far deeper place.
I'd like to throw out a special prayer request for Deanna who is working way too hard right now. That she would learn to not try and fix up the whole house right now along with everything else she has to do and burn herself out in the process-the house needs to be done in small steps over a long time in between higher priorities. It's not really something at this point that anyone can help with--helpers would just put things in wrong places. She should get to decide where everything goes and must know exactly where they went. Thus it falls totally on her. Pray that she would take this on slowly, a bit at a time, and find rest and peace and joy.
Yours in Christ,
Friday, December 11, 2009
We went in today and got Mike's CBC and then spent a few minutes with Dr. Khan in his office. At this point, Tricare pays 90% of what Medicaid pays and Medicaid pays just enough to cover the cost of treatment. Remember the post a month or so ago with the bill for $184,000 for Mike's treatments for 6 weeks? Let's assume that 50% of that is cost or $92,000 (I am just making this up by the way. I don't know for sure). That means that for 6 weeks, Dr. Khan paid $9,000 to treat Mike. I like putting numbers to it just to make it more real. $9,000 is probably the salary for 1.5 staff members. So, Dr. Khan submitted a letter to Tricare asking them to pay what Medicaid pays for Mike and I believe 5 others at the clinic. He asked them to respond to his request in 30 days. At the same time, he submitted the 90 day notice letter to Tricare that he will no longer accept Tricare Prime patients. He wants to continue treating Mike and his other patients, but he will not accept other new patients. All he is asking is that they meet his costs.
I am a little shell shocked right now. I didn't know that Tricare actually paid less than Medicaid. This is probably not a big deal if you live in a military community where they make up the costs via volume of patients. It is probably not a big deal if you see doctors for routine issues. But that is not the case with us. You never know if it might be you. 18 months ago, things like this were never thought of and I never knew I needed to be concerned about it. My concern is still the same as yesterday... what happens if Dr. Khan and Tricare can't work this out for Mike? But now there is also the thought of others. Dr. Khan will no longer be treating any new patients with Tricare Prime as primary insurance - that means all our military. Is that fair? I say that because so many doctors have written Mike off - one at MD Anderson, "the best cancer center in the world". Two doctors have told us to get our affairs in order and get on hospice in the course of 15 months. Yet, one doctor said during the first visit, " I had a stage 4 esophageal cancer patient live for almost 4 years. Who know what new treatments can be out in 4 years?" He is right. Immunotherpy, Proton Therapy, Angiogensis, etc. Who had heard of those 4 years ago? There is the virus that has been shown to cause cervical cancer, and the HER2 gene that has been discovered with Breast Cancer and Esophageal cancer. You keep walking. You keep praying. You keep HOPE. This is a doctor you want wouldn't you if it were you beloved husband?
Mike has no risk factors for cancer- no one in his family, no acid reflux, he is young, no factors that anyone can point to and yet here we are. It can happen - and the statistics for cancer are INCREASING according to a recent email we got from LIVESTRONG, Lance's Armstrongs foundation. They say that the statistics are pointing to 1 in 2 people will be diagnosed with cancer by the year 2030. That is in 20 years. Worst yet, there was an article today on the Internet that the new "healthcare bill" will be caps on diseases like cancer and diabetes. Caps? Have the Senator look into say Elizabeth's face and say "I am sorry, you have reached your cap so we are done treating your Dad." It is not the answer. There is an answer, but that is not it. I am going on and on about this, because I want you to know what you could be dealing with if you retire or get sick. I am hoping that our experience is something that you can learn from and not take our same path.
So now that you have probably stopped reading this post because of my soapbox, I need something from you. Pray. Pray that God's plan will be clear to us. If God has another answer for us, pray that it will hit us in the face. Pray that we can continue with Dr. Khan and go back to doing Chemo in his office.
If anybody reading this has any pull or knowledge with Tricare, please make a call on our behalf or call me/email me with wisdom. I have already talked to our Case Manager and she is working and asking questions. She is confident that Dr. Khan will continue treating us if Tricare won't meet the doctor's request to cover the cost of our treatment, but I am not. I also plan on placing a call to the Special Ops Warrior program as soon as I can unpack the box that my folder is in. They may be able to help too.
It is just wrong. This situation is wrong. People need to cover costs to pay bills. Companies need to keep costs down to stay in business. But in the end, where does it leave Mike. Who is going to have to make changes? The doctor? The insurance company? Mike? Pray that God's hand is revealed and that we walk only on the road He sets before us.
Thursday, December 10, 2009
Dr. Khan is still seeing Mike as a patient but now the rules have changed. As Mike stated, "This is hard enough, now it is even harder." We now have to order our White Blood Cell booster, Neuprogen, through the Speciality Pharmacy and have it delivered to our house. We then need to hand carry it to the Doctor in case Mike needs it. Chemotherapy? We now have to go to the hospital for our Chemotherapy as an outpatient. So we have to go see the doctor and then drive over to the hospital, register, and do chemo there in Day Surgery.
I remember when we first started Chemo last year in the hospital. I was surprised that the hospital did it on a regular basis. She told me that she has many Medicaid/Medicare patients that do Chemo in the hospital, because their insurance won't cover them unless it is through the hospital. We are now in that category and it is wrong. It is wrong because insurance should cover the costs to the providers. It is wrong because I am sure we can get these drugs cheaper in other countries. It makes no sense to me. What is the cost of doing it in the hospital vs. at Dr. Khan's office? Now let's add the added risk of infection to Mike being in a hospital setting.
Yes, I have talked to our case manager and everyone is working the best they can. Dr. Khan is trying to renegotiate with Tricare. Our case manager said that is the cost of doing business with Tricare. They may not make money on some things. But within this circle of all the $$, there is Mike. I am trying not to panic and trying to trust, but Dr. Khan has fought for us. He is the one Doctor that won't be a time limit on Mike. He still believes that even if he can't cure Mike right now, he might be able to in a year with a new treatment. That is the kind of person you want on your team.
Here are my specific prayer needs:
- For Mike - that we can quarantine him and keep him healthy until we get the Neuprogen. His white blood was in normal range, but he typically needs a shot by about Friday. If we can not get this delivered before Monday and his white blood numbers are low, then it puts off Chemo and everything else.
- Mike to gain weight.. last check it was at 136
- For everything to be resolved with the insurance/tricare etc. This is serious. I can see a few different scenarios playing out here and the worst one being we have to find a new oncologist. In the end, I may need to go back to work somewhere new where I can get insurance that will cover us here in the DFW area. Maybe this all relates to not being in a "Military Town" or near a "military base", but that shouldn't be the case.
- For me to figure this out and keep track of everything even though everything is a state of ciaos with the move
- For joy, peace, and time to be still and meditate this holiday season.
- To understand that the Lord brought us here to McKinney for a reason and that I need to trust that He will make a way for us medically, socially, emotionally, and financially.
We have more to post, but I want to give this issue it's own light. For all of our dear friends out there in the military, you need to consider where you move. Maybe it is not such a big issue if you retire and get another job as most people do. You can have other insurance and use Tricare as your secondary option. Other's might elect to go straight into the VA system. For us, the VA is an hour away (one way) and it takes a toll on Mike just to go. I can't imagine getting our care there 3-5 days a week.
Our house filled with little girls singing "Rudolph the Red Nose Reindeer" while putting up our Christmas Tree
Mike hung a few ornaments on the tree this year.. Last year, he was in the hospital. Thank you God for the small things. It has been two years since we put a tree as a family. We moved to Florida in December 07. Mike was in the hospital in December 08... God proves He is in control in December 09!
Sunday, December 6, 2009
Mike has held up pretty well. I haven't seen him throw up once this week. He has has waves of exhaustion and nausea, but God definitely answered a prayer there. It was absolutely impossible to move and keep on top of his food. I think the scale this week will show where I failed him this week. He has been complaining of his tail bone hurting and I think is because he has dropped weight and there is no cushion.
So now this week I need to find places to put everything and get the Christmas tree up before Christmas. All this on top of every thing else that the holiday season brings and another round of Chemo this week. I am amazed at the person I have become over the past year and a half. The tasks at hand seem so overwhelming, I just want to hide. That is not me..at least it wasn't me. I am beginning to wonder when "Deanna" will be back.
Please pray specifically for Mike and his weight. We need him to gain weight. Pray that the Chemo is killing all the cancer and only the cancer. Pray for Elizabeth and I. Pray that nothing else breaks in the house right now. Pray for more time in the day.
I will end this praising... we are in a house that is ours. Thank you Scott and Kathy for the past year in your house.
Tuesday, December 1, 2009
- Mike started chemo and is doing well at this posting. He is talking and laughing with Doug and Dena in the living room as I type.
- Mike continues to eat. He has had some issues with meat and fresh tomatoes, but is able to eat and keep food down. Thank you Jesus
- Mike gained 3 pounds and is back to 141 lbs.
- We spent a great weekend at McKinney's Dickens of A Christmas downtown, wandered the square, saw a play of the Christmas Carol, and were blessed by FBC McKinney's Sunday service.
- We all ate at Churchhill's English Pub after church... Mike, Elizabeth, Doug, Dena and I. What a blessing to sit and eat together again.
- Closed on our house yesterday after Chemo
- Moved somethings over today
- Call 911 when the cold water valve for the washer failed in the open position
- Met the neighbors as we are borrowing a hose and wet vac
- Announced our arrival on the street with help of the McKinney Fire Department coming to help
- Am still waiting on the home warranty people to find a plumber to fix it
- Know how to shut off the water to the house
- Got the DISH Network guy wetter inside the house that outside the house in the rain setting up the Dish.
- Have spent tons of time laughing tonight - full details to come later when I have time to post the whole episode... (Sherry, it ranks right up there with Dena locking herself in the truck of her car!)