Newborn

Today is day 0.  The start of a new leash on life.

It all began at 10:45 am and was over by 12:45.  That may seem a little anti-climactic to some, but for us it is absolutely phenomenal and miraculous.

How many of us can say that we have literally been given the chance to start our lives over?  That in a way, we have cheated death.  We have been shown favor by our God and the wisdom and skills that He has given others to proclaim His glory through their hands.

The staff at MD Anderson has been, without exception, the most caring and gracious that could ever be hoped for.  We had a rough time Friday evening through Sunday afternoon with side effects from the chemo and related drugs.  They all spent time with us, talked Tamara through the pain, and worked alongside us to develop a regimen that could keep the headaches and nausea at bay.  Before we leave this institution, and our temporary family, I will try to mention all of them by name.

For now, there is one nurse assistant named Mira.  A very friendly person, who was not afraid to share her faith and her story with us this morning.  Tamara was extremely anxious about the transplant, not the procedure, but the milestone that it represented.  Mira spent a long time counseling and witnessing.  I will make sure that she knows what that meant to us before we leave.

On a slightly lighter note, have you ever seen a bag of life?

Well, now you can say that you have.














These are the 903.95 x 10^8 (90,395,000,000) cells that Tamara received this morning from a 47 year old male. [That's total nucleated cells.  Not sure what that really means, but I think it means that not all are actual stem cells.]








Straight in through the CVC, and now we wait.










A little soapbox diatribe here.  All of you need off of your lazy butts and sign up to donate.  Blood, plasma, platelets, organs, stem cells, and everything else.

Would you like to tell your loved one that they are going to die because no one cared enough to give up something that their body could replace easily?  Or that they can not see their kids grow up, or grow up themselves, because narrow minded people won't contribute organs that their body can sacrifice without major hardship.  Or that some people thought it more important to bury their loved one with his/her heart, liver, kidneys, lungs, etc. that are going to rot in the ground, but which could have saved your life?

You can definitely bet that this is not the end of the donation diatribe (kinda catchy, think I'll use that).

Negative 4

Remember all that stuff about chickens and eggs that I mentioned yesterday?  Well, we should have just made omelettes!

Today has been tough for her, to put it mildy.  Severe headaches started last night, and have never let up.  Maxalt is now only taking the slightest edge off of the pain.  The doctors say that it is the Zofran that they give her with the chemo to fight nausea.  Can't change the drug, so we have to fight the symptoms.

They have given her Phenergan, which is supposed to help.  Guess what?  One of the side effects is rebound headaches, which are even more severe.

She has been vomiting, nauseous, and in pain all day.  She was finally able to eat a couple of crackers this afternoon, which she promptly lost an hour later.

They are now giving her morphine along with something else that I can't remember to try and get it under control, along with regular doses of Maxalt.  At least the morphine puts her out for a while.

Guess that's why they use the word "cycle" for chemo.  Everything they give you has a side effect, the drugs to treat that side effect have a different side effect so they give you something else.  And so on, and so on...a vicious cycle.

Negative 5

Not sure what to say at this point.  All in all, things have been fairly uneventful to this point.

We had the other two parts of the chemo regimen today, fludaribine and bendamustine.  No side effects, totally unexpected.  We were told that while that was great, not to count the chickens before the eggs hatched.  Sometimes things happen a few days to a week later.  Isn't that special?

I spent the night last night, sleeping in the chair instead of the Murphy bed.  Both of us were exhausted, and actually slept between the nurses visits.  Not sure that my back really liked the chair, but whatever.

Here is Tamara getting checked in, doing vitals , and being an all around good girl.  Probably should have put that in the last post.

Since she has had to be the one constantly masked before we were admitted, I thought I would include the new fashion statement that anyone visiting must wear (at least until they have exhaled all of the nasty air from outside).

Other than some lingering GI issues from the meds, and the separation issues, she is doing pretty darn good.  We walk as much as possible, normally doing 1-2 miles a day.  And of course, she stays busy doing what she does.

Can you guess what she is up to?

More later.  The ATG she will get the two days before transplant is supposed to be...

Day Negative 7

Ok, we are officially moving on down the road now.

Yesterday, we did all of the final pre-transplant tests.  Nothing major.  We also were able to get her CVC dressing changed for the first time.  I thought maybe you would like to see a little graphic detail.

She always wanted bigger eyelashes.  These actually coordinate with her mask. 

This is the central venous catheter, with three lumens.

What a Hottie!

So today we went for more blood work and a meeting with Dr. Shah.  Everything is looking good, and the expectation is extremely favorable.  It took a while to get all the orders in place, but she moved into her new abode around 4 o'clock.

More Q & A sessions, taking vitals, etc.  Not the Ritz, but it will be home for both of us for a while.

Now the hard part (as if all of this isn't hard) starts for me.  I need to juggle work, home, and being there as much as I can while still staying sane.  Our neighbors are the best you could hope for, and will watch over things while I'm gone.  But, I still need to come home often to check for myself, wash clothes, pay bills, fix some care packages so I don't have to pay for the hospital food, and probably some stuff I can't think of right now.

It's OK, though.  I can be a tough cookie when I need to be and now is one of those times.

Keep the thoughts and prayers coming.  I'll try to fill in the gaps when Tamara can't.  Be forewarned though, she plans on trying to blog every day.

Gettin' going

We arrived here at MDACC at 9 this morning to sign the consent forms and get the first dose of Rituxan at 10:30, with chemo lasting around 6 hours. Tamara was going to sign off yesterday, but the person in charge of the study concerning her chemo had apparently changed the protocol without letting everyone know. The change required the patient to be totally off of the initial chemo for six weeks, instead of the original three. We had been clear for 27 days. Doctor Shah (transplant) was adamant that there was a work around, but since the guy that changed everything was in Europe, we would need to come back early so everything could be placed in motion.

When we got here, we found out the guy would not budge. The chairman of the SCT department agreed to override the decision, but this being a government funded institution, you have to get signatures from multiple people in a particular order. Doctor Shah worked feverishly to get them, but by 3 time was running out. We had to get started before 5, or the entire transplant was at risk.

We occupied our time by getting the lay of the land. We visited the transplant floors, got a tour from one of the nurses, checked out the observation area on the 24th floor, ate a really crappy lunch, and generally tried to convince each other not to worry.

Just before 3, and after a whole lot of prayers, we got the green light!

Now we sit here (actually, I sit here. Tamara is laying down.) and see what side effects happen. They started the IV around 4, with the Rituxan going in around 5. Tamara had a mild reaction in the form of throat pain, so they gave her more Benadryl and some prednisone. Whenever you have a reaction, they have to wait 30 minutes to an hour before starting back up.

It's gonna be a long night.

What the €#^@ ?

Ok, I warned that there would be rants on this blog. Here comes one. I've tried to keep it reasonably clean at Tamara's request, but this really pisses me off!  (Sorry, sweets.)

I am not one to ask for help often, and especially not from the government, but given the current situation we felt that we should petition for disability from social security. You know, that big government entity that folks our age keep paying into and will most likely never see the intended benefit from.

We fill out several pages, attach information from our doctors, write a dissertation, jump through hoops of fire, and all the rest of the things that you expect "the man" to demand. Our local contact with the SSA, whom I hold totally blameless in this debacle (and who, in my opinion, should be working somewhere else since she has a normal complement of working brain cells) looked everything over and put things on the fast track to an approval.

So, guess what we get in the mail?  Yep, DENIED.   Slightly paraphrased below is their stance (I added quote marks so that you know when I am getting a little bit of the smart a**, the quotes will be mine) :

"Yada yada yada", the determination was made by an agency of the State.  Doctors and other people who are trained in disability evaluation reviewed the evidence and "made up their minds to tell you to take your meds and quit whining".

You said you are disabled due to CLL with 17p deletion and preparing for a stem cell transplant. "We really don't care that you can't make the bed without having to rest for 20 minutes afterward, or that you could get a fatal infection from being around people, or that you could be dead in 2 or 3 years.  Dang it woman, get out there and drive a truck or something.  We have people with hang nails that really need our help."

Your doctor has prescribed treatment. If you follow doctor's orders, further improvement can be expected. There is no valid reason that you can't earn at least $1100 a month doing something. The evidence does not show that your ability to perform basic work activities is as limited as you indicated.  "No joke, this is actually what they wrote."

We determined that your condition is not expected to remain severe enough for 12 months in a row to keep you from working. "Liar. Get off your lazy rear and stop begging".

No shit, Sherlock?

Anyone want to hire a person with a terminal disease, that may be able to give you two hours of work in an eight hour day with only a few lapses in mental and physical stamina an hour. And you should know that this person may require naps (she can get a doctor's note) and you will need to make accommodations for that. You should also know that the meds this person will need to take to continue being a breathing employee won't do the trick for long, so factor that into your long range plans and the return on your investment. Oh, and by the way, if she contracts an infection while employed by you, you can rest assured that you have just opened yourself up for some major liability issues.

Really? Does anyone else find it morbidly amusing that we all pay for this level of expertise? Not to toot my own horn (that would be a whole new blog, and possibly inappropriate) but I know more about the prognostics of this disease than these idiots. As a matter of fact, our entire family and circle of friends (and our pets, the birds in the yard, the rolly poleys in the garden, etc.) know more than the incompetent panel of doctors and other people whose training is paid for by Uncle Sam. 

Maybe I should apply for a government job reviewing medical disability claims to supplement our income, since my wife is such a slacker.  No, that wouldn't work.  I don't qualify since I have the ability to  do limited research and comprehend the information presented to me.  Too many working brain cells at this point.  Maybe when I get senile.

Needless to say, we are appealing this travesty.

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.