What did you say???

Just hit a pothole that we didn't see.

I thought that I would be able to give the campath injections.  Made sense, the doctor's suggested it, Tamara was good with it.  Who wouldn't be?  Having someone you love do this in your home, where your comfort level would be at it's highest.

The insurance company, that's who isn't good with it!  Oh, they will approve it.  As long as I come up with around $55,000.00.  That is not a typo, there are three zeros to the left of the decimal.  Makes no sense to any of us why the huge price, when they actually save on professional fees.

So much for that!

A view from the passenger seat

As the navigator of the journey, the caregiver for your loved one, or whatever you want to call it, things are often unpredictable and totally out of your control.  And yet, you are the one called upon to help bring order to the chaos, and some semblance of control to the seemingly uncontrollable.

We spend the great majority of our time trying to expect the unexpected.  Our lives are filled with thoughts that begin with “what if, what about, why, what can I do?” and a multitude of things along those lines.

We don’t go through the physical pain, nor do we have the emotional mindset, of the one we love.  We have our own separate burdens to bear, and from my vantage point, the pain of these can at times be almost unbearable.  Yet, we have no choice but to suck things up and do what we have to do.  We do what we have to do for the person we love.  Unconditionally and without question or hesitation.  The way it should be.  It's not about us.  

From this side, at times you feel pretty darn helpless.  Well, that’s not exactly true.  You feel that way the great majority of the time.  There isn’t anything that you can do to take the pain away.   There is nothing that you can say to make someone forget that all of this is really happening.  All that can be done is to be there.  To offer up your shoulder when they need to cry.  Slip beside them in bed and cuddle when they need to be comforted.  Take notes so that you can repeat what they missed during the shock of the conversation with the multitudes of medicos.  Stay as outwardly strong as possible. Love them with all of your heart and soul.  There just isn’t much that we can do to play an active role in all of this crap.  Our lot is to provide passive support.

You can’t fix this, and that sucks!

  

I did have an idea recently to have support bracelets custom made for Tamara.  Not much, but something to let her know that there were lots of others out there that were with her in her fight.  When I first came up with the slogan “Fighting with Tamara” it sounded good and came off as being there at her side with fists clenched for battle.  After I ordered them, I saw another context to it.  “Fighting with Tamara”.  For those of you who know her, it still works out with the double entendre (Sorry Ron, I used a big word).  She can be quite obstinate at times, and fight the little things like resting more, doing less, and taking a nap.  Didn’t matter, I had already clicked on “submit order”, but it sounded right both ways.

I’ve got quite a few of these on hand.  Let me know if you want some.  You can contribute if you feel led to, but I didn't do this to raise funds.  The most important thing is to show your support for her.  I even have a little idea of something to do with these when we get to the point of being able to proudly proclaim that we had kicked this leukemia’s butt.  Those details can not be published here ‘cause Tamara reads my blog thingy.  Email, text, or actually call me and I'll let you in on the plan.

We have been told that I might get to actually do something soon.  Really do something.  I have to confess that there is this weird sort of cool feeling (not quite sure how to accurately describe it) in knowing that I get to give her the Campath injections over the next two to three months.

You wouldn’t think that being able to give your wife injections that will basically destroy her immune system is such a good thing, would you?  What if it was the only active role that you could play in potentially saving her life?

I may have that opportunity, and I am glad to do it.  Sounds strange, but you’ve got to be in my place to truly understand it.

High Water Crossing

I know it’s an old one, but there is a point to my using it today.  And it is still funny!

The Big Flood

It had been raining for days and days, and a terrible flood had come over the land.  The waters rose so high that one man was forced to climb onto the roof of his house.

As the waters rose higher and higher, a man in a rowboat appeared, and told him to get in.  "No," replied the man on the roof.  "I have faith in the Lord; the Lord will save me."  So the man in the rowboat went away.  The man on the roof prayed for God to save him.

The waters rose higher and higher, and suddenly a speedboat appeared.  "Climb in!" shouted a man in the boat.  "No," replied the man on the roof.  "I have faith in the Lord; the Lord will save me."  So the man in the speedboat went away.  The man on the roof prayed for God to save him.

The waters continued to rise.  A helicopter appeared and over the loudspeaker, the pilot announced he would lower a rope to the man on the roof.  "No," replied the man on the roof.  "I have faith in the Lord; the Lord will save me."  So the helicopter went away.  The man on the roof prayed for God to save him.

The waters rose higher and higher, and eventually they rose so high that the man on the roof was washed away, and alas, the poor man drowned.

Upon arriving in heaven, the man marched straight over to God.  "Heavenly Father," he said, "I had faith in you, I prayed to you to save me, and yet you did nothing.  Why?"

God gave him a puzzled look, and replied "I sent you two boats and a helicopter, what more did you expect?"

Some have questioned why we are being so aggressive with our approach to this type of leukemia.  Why not wait a little longer?  Why not try other therapies?  Why not wait until she is “really” sick?

As you know if you’ve read Tamara’s posts, our leukemia is not run of the mill.  It does not respond well to chemotherapy, remissions are very short and the second round of therapy (which is inevitable) is not likely to last as long as the first.  So…the first choice has to be the best.

We have prayed, studied, researched, read blogs, and everything else possible to make our decisions.  We both agreed that getting in quick and “Get ‘er done” was what we wanted to do.

When we first knew that our next appointment at UTMDACC (henceforth called Anderson) was in early February, we did not have a donor match.  The odds were against having a good match in so short a time.  It usually takes at least six months or more.  We both knew, and acknowledged, that without a viable match there really wasn’t a reason to get excited about going there for more routine tests.  Blah, blah, blah and so on was all that we could expect.

A little background here.  On the donor registry, they look for a 6 of 6 match.  Doesn’t matter what they are matching here, just read the numbers.  Anderson takes it further, starting at 10 of 10, up to a perfect match of 14 of 14.  They get really excited (OK, I know it’s a stretch to imagine a bunch of researchy doctor types getting excited, but try) if they get a 12 of 14 match.

Now, back to the topic.  Just before our appointment, we find out that not only do we have a good match, we have a PERFECT match!!!  And to boot, we have two more 13 of 14 donors waiting in the wings.  Not something that happens regularly with transplants.

Are you starting to see the similes here?  Two boats and a helicopter.  Two 13’s and a 14.  If you are not catching on, start over and read from the joke back to here until you do.

So, we discussed it with the medical staff.  They had to go through the whole “you understand that there are risks with a transplant and you could die” spiel.   We went through the whole “yea, we understand that we (if she dies, I die) could die regardless and we are aware of the risks” routine.  More legalese kinda talk about new and promising therapies on the horizon, but no guarantees of when.

Perfect matches do not happen often, and especially not within this short a time, without a reason.  How could we decide to wait until Tamara gets sicker, or the worst case scenario of the donor getting hit by a bus or something?  Unofficially, they let us know that they understood where we were coming from. 

Legal disclaimer – there was not any coercion, or any other type of input on behalf of the medical staff to influence our decision.  There, that should keep their “you-know-whats” out of the frying pan.

Final verdict—we are going to start a regimen of a drug called Campath (trade name, if you want the details and the words that are hard to pronounce you can google it, or read Tamara’s blogs!).  This is not chemo the way most of us think of it.  Chemo is basically poison in a controlled dosage.  This one is a drug (again, you can research for the details if you want) that helps the body fight against the leukemia.  I get to administer it to Tamara here at home three times a week.  While I know that I can do it, I agreed to let the doctor do the first dose and watch me give the second in his office.  She wants to make sure I know what I’m doing.  Imagine that!

There are other drugs involved here, but I really need to leave something for Tamara to write about.  We all know how she loves to talk.  (Love you, Sweets!)

They will check her blood work after four weeks.  If she is responding, we will most likely continue with the limbo routine (How far can you go?).  Then, when the numbers are where they want them to be, we move over to the transplant team.

We ain’t passing up what He has put out there for us.  I know a helicopter when I see it!

Are we there yet???

"Are we there yet?"

No, not yet. 

"Are we there yet?"

No, just a little longer.

"Are we there yet?"

Don't make me stop this car!

I think we've all had that kind of conversation, at least those of us with kids.  This trip that we are currently on makes us all question when we will finally get to our destination, and finally be able to stretch out and relax.

Our next stop is scheduled for February 7 at MD Anderson.  Although not a "rest" stop, perhaps a "respite" stop.  We hope to be able to finally know where this long and winding road will lead us, or at least have a better idea of the ETA to the next little detour or pothole in the road.

We have a perfect match for the transplant, and should be moving forward with some type of therapy.  That may lead us down many forks in the road, requiring many pit stops, and maybe some minor repairs en route.

This Navigator is up for the challenge.  Just hoping for the strength and wisdom we both need.  Don't want to make a wrong turn!

Here's to hoping for an answer as to when we will get "there".

Starting out...

We've been on this little trip since the end of August, 2011. I don' t want to repeat everything Tamara has already said, so you'll just have to look at her blog for all of the gory details.

My intent here is to give the view from the passenger seat. I get to drive sometimes, but the perspective remains the same.

Caregiver...that's what they call me now. But I'm not sure that I really care for the title to only be associated with our fight against leukemia. When we love someone, we should be a "caregiver", whether they are sick or in perfect health.

I'm thinking that I'll call myself her "Navigator" instead. After all, isn't that a more appropriate title? I need to review the trip plan, assess the proper route, digest the information in the charts, advise when the turbulence is present, keep us on track, take over when the captain is unable to proceed, and make sure we reach our final destination.

Navigator, that's me.