Friday, January 29, 2010
This hospital stay has helped Mike. He has been able to get IV medicines for nausea, acid reflux and pain. Those were all the factors that were spinning out of control that led us here. The biggest obstacle to us leaving is that Mike's stomach/ GI tract is being sluggish and the pump is giving us issues. It may take time. Really we are just in a holding pattern, but Mike is doing better. AND according to the scale built into the bed he has put on some weight.
There are just praises all around and a sense of calm and peace flowing right now. Actually, I have felt an amazing peace since Wednesday afternoon. I still feel like we are in this calm right now watching God gather everything for his next masterpiece - somewhat like sitting in the kitchen watching as the cook is making a great dinner. You see the process of chopping, gathering, and cooking. You are smelly this great aroma. But not sure what the dinner actually is going to be. I feel that right now. But you know if God is the cook, you won't be disappointed!
Please continue to pray for us. That God will gives us direction. Where and what he needs us to do
Thank you to our dear friends for the mail and gifts this week.
For everyone that is led to send, post, email scriptures. It is so confirming when you get same verses from people all over the world. I know that it is God.
For the hospital visits, banana bread, offers of help, soup, and a good book
Wednesday, January 27, 2010
After last night's morphine for my back, yesterday I asked to switch to Dilotid (sp?)and the Doc graciously agreed. It's pretty quick to kill pain but is easier on your stomach and head.
As I got ready to go to bed the back pain flared up again It was time to change out the pain patches, so we did that and waited but it didn't seem to even dent the pain. So I went ahead and asked for the Dilotid, which worked like a champ.
So I just got about 3 hours of wonderful sleep before they had to wake me for a vitals check (all good). Best I've felt right now in some time.
So I thought I'd hop on the blog and catch up. Honestly, been so sick, I haven't looked at it myself in a long time. Deanna keeps me updated on your comments.
But your comments have been such a blessing and encouragement that I wanted to shout out a thank you and praise. I hope you all know how much I love you!
Please pray if you will for Deanna specifically. One of my docs stopped by unexpectedly today and told us the PET scan was quite bad. He neglected to bring me a copy, but Deanna will stop by the office and get us one tomorrow so that I can inspect it personally. He then went on his doom and gloom, no hope for you, get ready to die speech...but followed it up with how vital it is for us to start chemo again right away.
It rattled both of us. After he left we had a time of reading the healing scriptures and praying that got me re-centered fairly fast, but Deanna was still very upset.
Please pray for us to choose to listen to God's words and not this doc.
I think we have discussed before how problematic this PET scan can be. You really have to have a CAT scan to go with it before you can interpret the results, which we will not be able to get for a while. The PET is sort of like a smoke detector. If it goes off, your house might be on fire...but it could also just be someone burning toast. Won't know for a while.
Hopefully will begin slow rate stomach tube pump feeding with a new and hopefully much healthier liquid food sometime tomorrow.
Love you guys, blessings to all,
Tuesday, January 26, 2010
I will ask for specific prayer for Mike's lower back. It has been hurting for about a week now and is progressively getting worse. So much so that Mike took a morphine shot for the pain last night. It is contributing to the factors that brought us here. When you are in pain, you don't feel like eating. Then, Mike has to lay flat on his back. He can't eat in that position due to the acid reflux. Pray that God breaks this circle. Pray that Mike's back pain will be healed. Pray that we can gain weight and that we can go home. Our home is very empty without him. Pray that he will get rest here.
My praise today is one more day and everyone that is on their knees for us right now.
Monday, January 25, 2010
I am requesting prayer for this stay.
- pray for Mike and that this is the boost we need to get back on track.
- pray for the PET Scan. Results are not back. Pray that it is miraculous news
- pray that we get a private room and staff that will meet our physical and spiritual needs
- pray that we honor God with our words and actions and that we show the love of Jesus during this trial.
- pray that Mike will eat by mouth on top of the TPN so that he will bounce back quicker and that he will keep his digestive track working.
- pray for Mike's emotional strength. This is hard on him.
- pray for Elizabeth and I as we balance hospital and life.
I am praising:
- That there are options for us to help Mike get back on track
- For the gifts in the mail. Thank you agape.
Saturday, January 23, 2010
Yesterday was such a good day after the past two weeks or so. It brought such relief that Mike got the fluids. God also has done something else that is amazing. Mike's blood work is incredible. Truly, we have never seen numbers as high as they are - red blood cells, white blood cells, and platelets. Well, actually the white blood cells are staying in the mid normal range and he is now going over a week with out a booster shot. His platelets are almost at 200. We haven't seen that since last may?? I think. Thank you Lord Jesus.
At this point, we are in a holding pattern not sure what our next move is. Well, we know that Mike needs to detox and get stronger. We will definitely not be doing Chemo again this week. Mike made a comment early this week. He said he feels like if he does Chemo again it will kill him. (That is just a little insight into the past two weeks). We have been praying and researching, but not received an answer yet. We also want for Dr. Khan to get back from Pakistan to sort out insurance and get his insight. We are asking for specific prayer in this area. There is a doctor in New York doing amazing things in the homeopathic world using pancreatic enzymes, that we are prayerfully considering as well as some other options. But we are waiting upon the Lord...
So guess what happened Monday at the doctor's office? Mike went back to get his blood work done and I trailed behind him because I do the check in and payment so he doesn't have to stand too long and he can get back to a chair. Mondays are always busy and there was a spot with two chairs and one chair beside this lady who I don't know. We have seen her a few times, but definitely not often. (Now that I think about it, we have probably seen every patient a few times! Some you talk to and some you don't). Mike was not feeling well at all, but she patted the chair and told him to sit by him. He wanted to sit by me, but he didn't want to be rude. So when I got back there I sat by myself and I look over and this women is talking to Mike. I pull out my book and wait until he is done. We get in the car and Mike told me what she was talking about. She had just been on a trip to Israel (that her husband didn't want her to go on) and she was telling him about it. Then she said, " I saw your face three times while I was there and prayed for you." Wow. We are both in awe and really don't understand but know that it is God at work. Truly, we don't know her. I don't know her name. We have seen her maybe 2-3 times. Why did she see his face 3 times? It makes me think of Jesus asking Peter, "Do you love me? Then feed my sheep" three times. I don't know the significance or have a "so this is the result" end to this paragraph. All I know is that God is here and at work. I feel that a spiritual battle is in full swing for Mike.
I also had time to meet another couple walking cancer. Noel and Gloria. I asked them if they got married at Christmas! They just laughed. I am amazed at the fight that some people have. I also love when I see marriage at it's core design in action. For better, for worse. For richer, for poorer, in sickness and in health, til death do us part. I saw it in Gloria's eyes when she was sharing the battle they have walked this week. Noel's heart only pumps 1/2 right. He has breathing issues, blood issues, swelling issues, and of course cancer. But to walk by your partner, sometimes carry them, to cry for them, to love them, to cheer for them, to pray for them, to bathe them, to push them, and to really love them beyond words is the gift of a marriage designed by God. I think sometimes people might wonder if it is a burden, but for me, for Gloria, it is not. It really is an expression of deep, unending love.
Off my soapbox now, Mike had his PET Scan on Wednesday and we do not have results yet. I suspect that we will have them on Monday when we see the doctor.
Elizabeth's got her grades for the second 9 weeks and is still doing exceptional. We are proud. She is also improving at basketball and she has a game today. She was able to watch Star Wars Clone Wars with her dad last night and then stay up late reading book 4 in the Lighting Thief series. She is anxiously awaiting the movie.
I ended up having to change some setting on the blog due to getting spam in the comments section. It is relatively minor, but needed. I read every comment and if God leads you to comment, please do. Sometimes they are just a reminder that we are not alone and that prayers are flowing up on our behalf.
Mike to eat and take in enough fluids
PET Scan that it will reveal miraculous things
Mike will be able to detox after this last chemo
Medical options and wisdom with treatment
One more day
Elizabeth and I went to a movie last night - Tooth Fairy
Gloria and Noel - what a gift they were
The mail - thank you so much for the perfectly timed notes and gifts. Especially this past week when things have been difficult.
Monday, January 18, 2010
He is somewhat better, but he has almost no energy and strength. He took a shower last night and by the time he got out it was like he had just ran a marathon. I have to be honest, it freaked me out a little bit. We need him to eat and gain strength. I didn't even ask Mike to get on the scale today. I can tell he has lost weight over this past week. I spent some time praying last night asking God to give Mike his manna. The perfect food that sustained the Israelites for so long in the desert. It was given daily and just enough. Not only was it food, I think it had to be a daily reminder of God's care for His people even in the difficult journey in the desert. Every day, I am praying for manna for Mike - food (spiritual and physical food) that will nourish and strengthen him daily directly from the hand of God and also the same reminder to us both of God's intimate care for us on this difficult journey.
Thank you for your prayers. I thank God for you!
Friday, January 15, 2010
They offered Mike fluids, but he insisted he wanted to go home. So we got the white blood cell booster and came back home. He went straight to bed and asked me to darkened the room and keep the noise down. He is in the "hyper sensitive" chemo mode.
My prayers are constant, my battle over fear is raging. I am wondering if there was a mixed up at the hospital and Mike got more chemo than normal. He has never reacted this strongly on the first dose of Taxotere. The doctor did say that Taxotere can cause muscle ache. The hardest thing right now is getting him to take fluids of any kind. He just feels so bad. He did do a tube feeding this morning and I will keep on him about the fluids and keep a close eye on his condition.
The positive note here is that they pulled Mike's blood work for Monday's chemo and since we are doing chemo in the hospital setting, they will order this VERY expensive but extremely effective nausea drug for our next go around. It will be covered under the hospital umbrella but not under the out patient in office chemo (go figure that one..). But that is a praise and "lemonade" with the hospital issue now. Plus, I have called everyone I can think of and registered complaints(nicely), so that hopefully Monday will go smoothly. That being said, there is no way Mike could do chemo in his present state. So all this may be for not.
Please continue to pray for Mike as he fights. Pray that he will eat more and really start pushing fluids. Pray for good news with the coming PET Scan. He is amazing, even with everything. He has said relatively little today, but he was quick to remind me on the way to the doctor that This is the day the Lord has made and we WILL rejoice in it.
Our praise today is for one more day and that Mike joined Elizabeth and her birthday party guests last night for cake. The 4 girls were gathered around the cake singing Happy Birthday to her and Mike was behind them on a bar stool singing and tearing up (girls didn't see). It was hard to hold it together. So many emotions flew between Mike and I in a split second of eye contact. What a gift - 12 years of an incredible gift.
Thursday, January 14, 2010
I am praising that God will hear the prayers and that you are walking, praying, and staying by our side even though time is marching on.
Tuesday, January 12, 2010
Please be in prayer that the Lord will continue to lead us in the right path. This could very well be part of His plan, but it is overwhelming and emotionally hard.
So here is my letter to whoever:
Dear Mr. Tricare or Goverment official -
Help! You can debate, negotiate, cut fees, say it is not insurance but an"entitlement", add pet projects, address part of the issue, but what are you doing? Please, Please, Please, do what is right for Mike and for others. Scroll down and look at the individual before you look at the overall picture. Because in the end, that what it is... your insuring and treating an individual.
With great love and great prayer for this country,
Just one small voice who loves her husband, a great man who served this country with everything he had for over 19 years.
Monday, January 11, 2010
I know I have been whining/complaining a lot about this and eventually I will have to let it go. It is just so difficult. Mike has been quiet the past day or two, and it finally came out that he was just dreading chemo today. Then you come to the hospital to find that there is no room in the inn so you are placed in the back. The place we are in is cold (because of equipment) and the bed is uncomfortable. Mike has almost no body fat so he gets cold easily. I am so grateful that we had almost a year of in office chemo. So thank you Jesus for the unknown blessing and your care for us.
Today, while I was waiting to get the medical bills/numbers/costs, I was in line with about 5 other patients waiting to check out. Bill made a comment to me about having to go over to the hospital too. I said yes we are having insurance issues. The conversation then flowed around to everyone chiming in on their medical/financial issues. Bill is near his insurance cap which means once his medical bills go over say 2 million dollars, the insurance won't pay anymore. He stated he won't used his savings and will probably stop treatment so that his wife will have money. He wished he had bought a supplemental insurance policy and this wouldn't be the case (Lesson for all those reading - check out supplements- even on medicare).
This other gentleman has colon cancer and he chimed in that he was glad that he had a supplemental. He ran into complications during the surgery and stayed in the hospital 10 days and the bill was over $550.000. If he didn't have the supplemental, he would have had to pay 20% and that would have wiped him out totally. (Lesson reinforced). However, he is now running into a problem with the supplemental, the monthly price keeps going up. It has doubled in price (from 100 to 200 per month) in the past year. He is stuck. He can't get rid of it because he won't get another one. He is on a fixed income.
Everyone then started talking about how no one has any idea. Everyone assumes that they will be healthy, that they could never get cancer, that if I eat right and exercise, I won't have to worry about it. OR they look at a policy and assume I will never reach $5 million in medical costs. My eyes have been opened wide over the past 16 months. How about a town meeting about insurance, medical, etc with cancer, arthritis, diabetes, and other medical patients? We are so careful to talk investments, life insurance, college funds, buying a house...ways to plan for the future. But no one talks about how to prepare for health/medical issues. I can't not tell you the number of people we have met that have lost everything and are in debt due to medical. And they are not who you think. They have jobs and they can't quit. They do chemo for 3 days and then work for 10 days in a row and then do chemo. Chemo is their weekend.
Where are we 16 months into this? Prior to this, we were both working and our income has been cut by about 50% not including the housing allowance on active duty. We had investments that were worth over $70,000 that are gone. We had a savings account with the "3-6 months worth of pay" that is now under $1000. We now have debt- not huge, but debt. My family has graciously payed over $78,000 for the homeopathic treatment we received here and in Florida. Scott has let us live in his house for almost nothing. We spend right now around $400-$450 on co pays (they add up) a month until that caps hopefully soon and another $100 on prescriptions and then there is the homeopathic that we pay for that honestly runs between $500-$1000 each month. It depends on if Mike runs out of Haelan. That cost $700 a case, but is so important for his nutrition. We stopped using it and that is when Mike's weight loss was out of control. Once we started it again, his weight stabilized.
AND here is the thing, we are so BLESSED. I mean blessed. We were able to get a house that we will be in for a very long time due to incredible VA Programs and the State of Texas. We have income from Mike's retirement. Could it be more? Sure, but it is income and we don't face the threat of being fired and losing it. It is also just enough for me to give everything I have to take care of Mike and Elizabeth. Because not only is Mike important, we as parents are walking this with Elizabeth. That has a whole other set of issues that we have to address sometimes over other pressing issues.
Today is one of those days just like last week, where God is reminding me to look beyond our situation. To see all the incredible gifts, blessings, joys, life, and care He is giving uniquely to me and my family. I am going to end with Psalm 95 verses 1-7 that sums everything up perfectly..
Come, let us sing for joy to the LORD; let us shout aloud to the Rock of our salvation.
2 Let us come before him with thanksgiving and extol him with music and song.
3 For the LORD is the great God, the great King above all gods.
4 In his hand are the depths of the ears, and the mountain peaks belong to him.
5 The sea is his, for he made it, and his hands formed the dry land.
6 Come, let us bow down in worship, let us kneel before the LORD our Maker;
7 for he is our God and we are the people of his pasture the flock under his care.
Mike - to gain weight, to beat back the depression of continuous medical appointments and procedures, to gain energy and strength and for the cancer to bow down in submission to Jesus's healing power.
Deanna - for wisdom on all fronts and guidance for Mike's medical care and needs
Elizabeth - her end of semester exams
For all of us to listen to God and really walk with Him and in His plan
medical care - in all the whining, I want to thank God that we have something to whine about.
That others can benefit and learn from our journey
So it is now the end of the day and the post above sounds so good but I am sitting here in such a different mood. Mike is still at the hospital and in the end I am just mad. We got to the hospital at 9:30 and we waited back in that room until 4:00 pm for the chemo to start. It appears that he will be done by 8:00 pm tonight. Mike deserves better than this. He just does. To be shoved into a stall, cold and made to wait hours...It is not right. This is not the benefit we signed the dotted line for. So I had to leave Mike to go get Elizabeth from school. I am home getting her together and will leave shortly to go back and watch over Mike. And guess what was in the mail? Another attack to our day.. a medical bill for $1,000 that Tricare declined for Mike's port removal back in April due to a staph infection. The best information that I could get is that there wasn't a referral in place, but the guy wasn't sure. I needed to call back tomorrow when they are open to take calls in claims. Some days are just exhausting.. THIS day is exhausting!
Friday, January 8, 2010
Mike saw the doctor on Monday. He has gained 2 miraculous pounds. We made the decision to take the week off from Chemotherapy. Mike was feeling good, gaining weight, and gaining energy and strength. We just were not ready for the ride to stop. So Mike has spent the week eating, playing Wii, staying out of the cold, and just being a great husband and father.
Have I mentioned what a great man Mike is? I had an opportunity to meet another wife this week that is walking cancer. Her husband is 43 (same age as Mike) and has stage 4 cancer. She has been doing this for 2 years and they have 2 kids. Throughout our conversation, I was praising God. At first, I was just thrilled to meet someone that could understand me and everything that makes up our life: cancer, kids, money, medical, stress, living, etc. But as we shared, I quickly switched to listening mode. She was tired. Her husband was quite the opposite from Mike. It never occurred to me at that point, that those with cancer don't react the way Mike does. Some people are angry, some shut down...all are completely understandable. I was tearing up because I have so much to be Praise Jesus for.
Mike shows his love to Elizabeth and I every day. Whether it is through our code word in a text, or bringing home 3 roses the other day for no reason. He will stop and teach Elizabeth math or something else, despite feeling so bad after chemo. He will always take a moment with her no matter what. He is careful to boot me out every once in awhile to take time for me. Mike says thank you in big and small ways. He is a great man of such character. Definitely one in a million. I thank God that I made him marry me :).... Yes. This man is my husband and our marriage and love has evolved over the past year. We are fighting for each other with everything. It has grown on a spiritual level and matured to something more that I can't quite put into words. It is not a desperation thing, but a bond that is unbreakable. This is one of those times where I just don't have the vocabulary to explain it.
So we are starting Chemo again next week and have to get admitted into the hospital again. Everyone knows how I feel about that so I won't say it. I found out that it costs $38,000 for us to get admitted for Chemo in the hospital. Tricare pays $4400 to the hospital. It costs $15000 for us to do it in house at Dr. Khan's and Tricare pays $5300 (and that isn't cost). Tricare has been incredibly silent and my case manage hasn't returned my call this week. The writing is on the wall with this one I guess. This is what is wrong with the health care system. Speaking of the health care system, did anyone get the news that MD Anderson dropped their Medicaid patients because of not getting enough money with the new changes? 3000 patients in Arizona I believe. Someone needs to explain how large intuitions get tons of federal dollars for research, grants, National Cancer institute, and yet can drop those insured by the same government that feeds you. Why does this concern me? Because as I have blogged before, for some medical things Tricare pays below Medicaid. I really want our dear military friends to think about that.
I don't want this blog to become a political thing, but I do want people to learn through our experience to either help themselves or someone else who might have to walk this journey too. I will do better at posting. In fact, I will post on Monday from the hospital room during Chemo. Hopefully we will get a room this time and not get shoved in the back again!
Mike to eat more and gain more weight and strength
For me to finish getting things together
For our week - I have Jury Duty and Elizabeth's Birthday Party and Mike is starting Chemo again. That God will put a hedge of protection around Mike and that the Chemo will not affect him.
For Financial fortitude, wisdom and direction
Elizabeth- she has exams this week
For us to hear back from Tricare about going back to in office chemo
For health and protection in the hospital on Monday
For us to hear back from University of Pittsburgh about growing a new esophagus (for lack of a better medical term!)
Mike - he is eating and it is awesome. He is not eating tons at a sitting, but he is eating all the time. He even ate sushi this week.
For my chance meeting - what an gift it was
For our new homeopathic treatment that we started this week. It is exciting but I can't blog too much about it yet.