One in a Million

I am going to have that printed on a T-shirt for my husband because apparently he may be One in a Million!

We had our appointment today with the hematologist/oncologist. I was expecting nothing much but that was not to be. Here is what we are now facing...

Three tests came back concerning.

Two weeks ago the doctor wasn't very concerned about the carcinoid cells. Now he is. The test for that came back "elevated". We don't know what that means at this point but more tests are being ordered. This is a very slow growing form of cancer, it could have been there 20 years so. Cat scans are being ordered right now, I'm not sure what's next. What we do know is that the current concern is the nodule on his adrenal gland. That gland sits on top of your kidney. The doctor assured me today that you can live a full life with just one kidney. Not sure I wanted to here that but ok!

Test number two is a little odd. He came up positive for something called lupus anticoagulant syndrome. This does not mean he has lupus. Actually I'm not sure I know exactly what it means but the doctor said it's treatable. They do not diagnose you with this disease until you have two positives so more blood work is being done.

Number three is a bit tougher. It's called paroxysmal nocturnal hemoglobinuria or PNH. It's usually not a good thing when your doctor is reviewing your record and suddenly says "wow". What he explained is when someone goes in for blood clot issues a battery of tests are run including this one. They never expect a positive because it is only seen in 1 to 5 in a million people. Most hematologists never see this their entire career, including Steve's doctor. A follow up test is being done. They shipped some blood via Fed-Ex today to Maine. Apparently a lab there specializes in this. It takes one week, we will know on Tuesday. Interestingly enough Steve's doctor will be traveling to a convention later this week in Florida. One of the items being discussed is PNH.

So here is how I am choosing to look at all this news.

1. Steve had all of these conditions and either God is going to heal him miraculously either divinely, through medicine and doctors or ultimately through death. Steve could have died many times over this past year and he didn't. I do not fear that as much as I used to. He truly is in God's hands.

2. The knee surgery/vocal cord injury/blood clots/tracheotomy all happened in Gods plan to reveal all this other stuff that we would have NEVER discovered otherwise and it can be dealt with. If all this had not happened it is entirely possible it might not have been found it until it was too late. Steve is only 52. Everyone keeps telling him he's young. If these are things that can be treated better to do it now than when he is older with decreased chance of recovery.

3. The tests are all wrong. Never know, we are talking about the man who had a suddenly re-grown appendix! I'm ok with this too.

There is a saying in the medical profession: When you hear hoofbeats you think horses not zebras. In other words you think of the most likely cause of a problem not the unusual.

It's looking like my husband is a zebra.

Don't ever doubt the power of prayer.

And I am telling myself that too. I know it can be hard to remember sometimes, especially when we don't get the answer we were hoping for. But God does always answer prayer.

I apologize for not updating after the last post. I'm never sure if anyone reads here. I know some of you I know "in real life" tell me you do and I guess I just assume that you know what's going on. But then there are those who don't and I'm sorry if you think Steve has been in the hospital all this time! He was actually released a couple of days after the last admittance.

So much has happened since then so I won't go into great detail. Steve has had a little bit of a rough time lately with pain and breathing. Getting his blood thinning meds stable has been a bit challenging as well but we press on. He was seen by the hematologist and he is looking into the causes for blood clots and also the carcinoid tumor concerns. He took about 12 vials of blood one day and then 6 more the next day. We go back next week to talk about all of the results.

But most important is the phone call I got today. About two hours after my friend Kim posted an update and prayer request to our church email list my phone rang. It was the pulmonologist we like and trust so well, Dr. Bala. He was checking in to see how Steve was doing and wanted to let me know what he plans for him. He was unable to see Steve while he was hospitalized as he was afflicted with the flu. It was frustrating to not have him consult because he knows Steve so well. I did have a few moments of panic because the residents started asking lots of questions that caused me to fear they were seeing something new and concerning and I thought we had been through all of that before. Looking back I realize that they are eager to find a "cure" for him and want to help. They did not realize we had been through all of it already and Dr. Bala was not there to shoo them off...LOL! But even though I had concerns I still had a peace about the situation.

Anyway...the phone call. Dr. Bala sat down and reviewed all of Steve's CT scans, and there have been MANY! He does not believe Steve had new clots. He thinks what they were seeing was one of the old clots. He said it looks different because it is diminishing and the scan itself was not a very good one. He really thinks the coughing up blood was related to the trach and blood thinners. He actually said that his lungs now look "structurally normal"....PRAISE GOD for that!!!! He is going to schedule a bronchoscopy for next week just to make sure they are not missing anything, for our peace of mind and his.

This really is big news for us. Thinking he was having blood clots again was very frightening. Pulmonary embolism is the third leading cause of death in the US. If you have a big enough clot that blocks the pulmonary artery you are dead in seconds, quicker than a heart attack! The thought that my husband could die at any moment put us more in the hands of God than anything ever in our lives. Thank God for good friends ready and willing to "pray me down" when huge panic has set in at times!

I really do believe we are turning the corner. Tonight Steve was a little scared because he could not catch his breath. It took a little while until I realized he was trying to breathe through his mouth, which he normally does and can do well with the trach. Well he could not breathe at all and was starting to panic a little until I told him to concentrate and breathe through his neck. He took a few breaths and then relief. He looked at me and nodded his head. He had to remember this is why he got the trach in the first place...his throat was closing up. Had it not been for the trach he would likely be in an ambulance. Instead he is in bed and breathing and sleeping peacefully.

So that is what is happening now. We do still need to figure out why he has so much chest pain. We will go back to Stanford soon to see the GI doctors and hope they have answers. Steve is still having lots of GERD issues and is on the narcotics daily but they are helping him function and keep the pain in control. One step at a time!

Relapse

I'm making this quick as it's 3 am and I have to get sleep.

Steve is back in the hospital. He had some very bad chest pain yesterday afternoon {Thursday} and said he felt like something burst. Then he started having coughing attacks and there was a lot of blood. He came home and asked for a breathing treatment right away. That was not helping so I called the doctor and he said to go right to the ER.

We didn't even have to wait one second, they took him right in. Within 45 minutes they diagnosed 3 new blood clots in his left lung.

This makes no sense as his blood is more than thin enough with the medication he is on. I don't know yet what the plan is but they do know they need to find out what is causing the clots.

Will update as I know more.

Milestones

Taking a look at the calendar today I realized a couple of things.

It has now been a year since Steve's knee surgery. The surgery that seemed to be the start of the downward health spiral.

It has been exactly one month since Steve has been admitted to a hospital. That's the longest stretch he has had in a very long time. And we plan to keep it that way!

When I look back on this year, especially September, I sit here amazed at where we are. I was pretty sure I would be sitting here a widow by now...or very close. And now to have him alive, well and thriving. There are no words. Other than THANK YOU LORD!

Our lives are very different now. Lots of adjustments and the need to stay very diligent with his medications. But it's ok, he's worth it!

One prayer request though...the edema is horrible. Steve's pulmonologist currently has him on a weeks worth of diuretics for the second time. They work really well but as soon as he stops them it comes right back. I have never seen anything like it. You press on his leg and it leaves an indent so deep you could eat your morning cereal out of it! Problem is you can't take diuretics for long periods and they really need to find the cause and correct that. As far as the cardiologist is concerned his heart is good, pulmonologist says his lungs are good. Those are the two main concerns. So something else is causing it and we need to find out what. It gets so bad he can barely walk. It's frustrating to be able to finally breathe well and not be able to walk because your legs feel like lead filled balloons! His pulmonologist did wonder aloud if this could be from the excessive amounts of steroids he was on. Maybe, all I know is it really needs to stop!

As always thank you for the prayers, love and support!!

For a friend.

When I didn't have hope Jesus led me. There were many times I felt alone, fearful, despair. But He always brought me through that place.

This is for my friend Charis.



Good morning
The night is over and gone
I thought once
This dark would last for so long

Feel the sunlight
On my face
You have brought me
Through this place

Jesus, Jesus You found me
Through the long night you led me
You set me free

Do you see
Just what you've done in my life?
You gave me
More then I hoped for; now I

Feel your sunlight
On my face
You have brought me
Through this place

Jesus, Jesus You found me
Through the long night you led me
You set me free

Feel Your sunlight
On my face
You have brought me
Through this place

Jesus, Jesus You found me
Through the long night you led me
You set me free

Good morning
The night is over and gone

In case you were wondering

I do have to apologize for not updating more often. If you look at it positively that is actually a good thing!

Steve is actually doing very well. Better than I have seen in a very long time. Not only is he breathing but he is sleeping. And sleeping better than he has in years. What a difference a good nights sleep makes! He has so much energy he collapses in exhaustion at night and then sleeps good all night and is ready to go the next morning! He's been spending a lot of time at work catching up and passing the inspections they failed while he was in the hospital. They are very happy to have him back. And then when he gets home he is trying to catch up on all the household stuff he has been unable to do this past year. May take him that long to get it all done!

I, on the other hand have just been dragging. I don't know if I have been fighting off a virus or what but I could use some energy. The gray skies and wet don't help but getting kids back to school and into routine will hopefully help. Everyone around here is busy these days.

And speaking of busy. Steve has taken his paintball gun obsession to a whole new level. I was informed the other day that I had to remove all my clothes from the closet because they were taking up space he needed for his new collection. From the look I gave him he decided to re-think that! I don't know what the fascination is but I don't really mind. It is something he is enjoying and helps with bonding time with his boys {and girl...she can't WAIT to shoot up the Christmas tree in the backyard!} and gives him something to look forward to. He needed that in his life right now so I'll tolerate a stray ball here and there. {yes you read that right...he "accidentally" shot off a few in the shower. Lucky for him they wash right off!}

So here is to a healthy and hospital free 2009! I like the sound of that!

Psalm 71

In you, O LORD, I have taken refuge;
let me never be put to shame.

Rescue me and deliver me in your righteousness;
turn your ear to me and save me.

Be my rock of refuge,
to which I can always go;
give the command to save me,
for you are my rock and my fortress.

Deliver me, O my God, from the hand of the wicked,
from the grasp of evil and cruel men.

For you have been my hope, O Sovereign LORD,
my confidence since my youth.

From birth I have relied on you;
you brought me forth from my mother's womb.
I will ever praise you.

I have become like a portent to many,
but you are my strong refuge.

My mouth is filled with your praise,
declaring your splendor all day long.

Do not cast me away when I am old;
do not forsake me when my strength is gone.
For my enemies speak against me;

those who wait to kill me conspire together.

They say, "God has forsaken him;
pursue him and seize him,
for no one will rescue him."

Be not far from me, O God;
come quickly, O my God, to help me.

May my accusers perish in shame;
may those who want to harm me
be covered with scorn and disgrace.

But as for me, I will always have hope;
I will praise you more and more.

My mouth will tell of your righteousness,
of your salvation all day long,
though I know not its measure.

I will come and proclaim your mighty acts, O Sovereign LORD;
I will proclaim your righteousness, yours alone.

Since my youth, O God, you have taught me,
and to this day I declare your marvelous deeds.

Even when I am old and gray,
do not forsake me, O God,
till I declare your power to the next generation,
your might to all who are to come.

Your righteousness reaches to the skies, O God,
you who have done great things.
Who, O God, is like you?

Though you have made me see troubles, many and bitter,
you will restore my life again;
from the depths of the earth
you will again bring me up.

You will increase my honor
and comfort me once again.

I will praise you with the harp
for your faithfulness, O my God;
I will sing praise to you with the lyre,
O Holy One of Israel.

My lips will shout for joy
when I sing praise to you—
I, whom you have redeemed.

My tongue will tell of your righteous acts
all day long,
for those who wanted to harm me
have been put to shame and confusion.