What we learned yesterday

I wasn’t able to update much yesterday. It seems kind of silly that I didn’t update much yesterday, given that we were very late for every appointment and spent the majority of our day waiting. I left my laptop in the van because¬† I didn’t think I’d have the opportunity to update the blog since we were so late after the MRI.
Note to self: Skye, always take your laptop, even in the off chance that you may be able to use it.

What we learned from the MRI:
1- Always bring a snack. The MRI Center will run behind if you need to be somewhere else on campus.
2- Always bring the power cord for your laptop with you in the off chance that you will be waiting SO long your battery dies.
3- Have the MRI peeps call the doctor that you will be seeing next to let them know why you’re late…to avoid a late fee or canceled appointment. (Oh, that was a fabulous thought on my part! We avoided both scenarios!)

After our extended stay in the MRI Center, we drove over to the Cancer Center to see Dr. T. We were only an hour late.
And he was already behind, which he usually is. Our appointment was at 1:30. We arrive at 2:30. And we didn’t actually see Dr. T until 4:00.

Things we learned from Dr T:
1- Chad’s MRI is okay. No noticeable tumor regrowth.
2- Chad’s ventricles are finally the appropriate size – so the shunts are working!
3- Chad needs an increase in seizure medication.
4- Chad is a mystery. They can find nothing on the MRI that would make him have all the issues he is having.
5- The growth on Chad’s chest (where the shunt tubing was rerouted to the lung through his pectoral muscle) is likely a spinal fluid collection from the shunt tube. Which means it’s damaged in some way and will likely need to be replaced. We were sent to get a chest x-ray to confirm.
6- The irritation Chad is feeling from the second shunt tubing is going to have to wait. Basically, his body sees the tube as a foreign body and just needs some more time. Maybe a couple more months. If it’s still bothersome, we have a few choices.
7- We don’t have to go back until September for a 6-month MRI…unless we need to before then. See items 5 and 6 above – I’m sure we’ll be back before September.

The grand lesson there? Chad is a mystery. And Dr. T has NO clue why he feels so bad.

We got out of Dr. T’s office and went down one floor to see Dr. L, a Hematologist. To be honest, Chad & I didn’t really know why we were going there. But Dr. T wanted us to talk to Dr. L; a specialist in how medications react with the body. If anyone would be able to help or get us on the right track, it should be Dr. L.
Our appointment was at 3:45 and we actually arrived at 4:30. We saw Dr. F first, then Dr. L entered and discussed a few things with us.

Things we learned from Dr. L:
1- Chad, most likely, is experiencing the long-term effects of chemo, radiation, and a combination of all other drugs he’s taken over the last two years. It is, most likely, permanent.
2- There are a few medications Dr. L suggested we try….under the care of Chad’s neurologist in Raleigh.
3- Dr. T and Dr. L want Chad’s neurologist to take over all seizure and pain management medications.
4- There may be a hormonal imbalance (caused by radiation and chemo) that are causing a few of Chad’s problems. They need to analyze a blood sample.
5- Dr. L is not taking Chad on as a patient right now — because he feels we would be better served to stay local in the Triangle. (Which is good news; but also frustrating. WHY did we meet with him then?)
6- Trial & Error is what we are reduced to. We will try different meds and see what happens. And let me just mention that most of these medications need to be given a full 6-8 weeks to determine if they are effective. Not really fair in my book. But it’s our only option at this point.
7- Chad is a mystery. There is nothing on the MRI to indicate why he’s feeling so bad.

The whole appointment with Dr. L probably took about 45 minutes, waiting time included.
Then we were whisked over to the lab for a blood draw. Can you imagine how hard is it to get a phlebotomist to¬† come to the Cancer Center to draw blood after 5pm? All the clinic phlebotomists were off duty, so we had to wait for a hospital employee to come do it. It was a little difficult. Someone finally came and drew blood and we were on our way….to x-ray!

The “day” hospital closes at 5pm, like most businesses. So we had to go to inpatient radiology — and we had to get a map to show us where, deep in the bowels of the actual hospital, it was located. We made our way there — only to be greeted by a very nice (and talkative) fellow Johnston County native. She discovers that Chad’s x-ray orders are not entered into the system yet, and she starts calling Dr. T’s office. It’s after 5pm. No one is there. Or course.
But she does track down the Attending Physician and promises to get some orders in the system STAT.

At this point, Chad is pretty tired and he needs his medications. We decide to go get his meds (in the van — aaaallllllll the way on the other side of the campus) and then get something to eat. It’s about 6:00 at this point.
On the way to get his meds, Chad feels a seizure coming on. It never materialized, thank goodness.
He has problems walking down stairs — and wouldn’t you know we met every flight of stairs on the way to the parking lot? He nearly fell a few times, but was caught by the railing.

He gets his meds.
We go to the cafeteria to eat.
We go back to x-ray.
And they promptly call his name — it’s the first thing that has gone quickly all day long!
He is in & out in about 10 minutes.
We burn rubber to the van and hit the road. Finally. At 7pm.

Needless to say, I was exhausted when we got home.

What is the biggest thing we learned yesterday? Did you sense a trend?
Chad is a mystery. And no one knows what to do next.
They don’t know how to make him feel better or IF they can make him feel better.
I am frustrated. Not really mad (yet), but disappointed that our options seem so limited.

However, I am also thankful.
Chad is still here. He is still a fighter. And we still do have options, even though they seem limited.
And the MRI finally showed that his ventricles are working — and there is no tumor regrowth yet.

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3 Responses to What we learned yesterday

  1. Candace says:

    Skye, I'm just so sorry you're having to go through all this… I'll pray for answers for you guys.

  2. shannonknox says:

    I am SO glad that there is no regrowth, that is a postive and we all need to focus on just that the positive!! We love you guys and are always praying for you all!!

  3. givensi says:

    Skye, I can't begin to tell you what a wonderful Wife and Mommy you are!!!! You are amazing. Praying everyday!
    Love you all,
    Iris

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