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.