Day 14: Something More Light-Hearted

How things can change in a day! Earlier today I posted about whatever I did to my eye, and I put a picture taken right afterward.

The picture is pretty dramatic. I had just leaped out of bed to experience massive dry heaves. In the picture you can see the gel that leaked out everywhere except within the iris area, and you can see the swelling in my eyes as well.

My lips are also swollen from being chapped and from mouth sores, and we had not yet figured out how to stop the rash that was all over my face and a lot of my body.

The picture that starts this blog was taken today, two days after my little traumatic event which had happened in the morning (on Sunday, then, I guess).

Anyway, as you can see, vaseline for the chapped lips, plenty of continued mouth rinsings, and antibiotics and hydrocortisone for the rash on my face and body, my whole head is recovered! I look like like an old, bald guy, with almost a double chin and spots and bruises all over my body.

I haven't had a lot of energy today, so I've rested a lot.

Day 14 is the official bottom of the pit, where you start hoping for things to begin healing and recovering. Of course, cord blood cases like mine take longer. Of course, I already started to begin healing and recovering.


I still haven't told you about the adult diapers I started on yesterday. (I moved up to Depend® pull-ups today, though. I'm a big boy now!) It's not as bad as you think, and I'll spare you a lot of details. There haven't even been any messes to clean up!

Anyway, I shared a couple videos the other day from Nick Vujocic, who is well-known now. All us 70's and 80's Jesus Freaks remember Joni Eareckson Tada, who is still doing good for the Lord as a quadriplegic. The link is to her biography on her site.

Day 14: Waking Up A Little!

It has been hard getting posts out this last week between exhibiting new symptoms, then being part of the "symptom demolition derby."

Dr. Jagasia told me once, "We try to control everything we can prior to transplant because after transplant, we have no more control! After transplant, we can only react."

So they've been reacting.

My short term memory was already terrible, and radiation and chemo has made it worse (though possibly only temporarily). So while I can promise anything I write about today really did happen, it may not have happened in the order or on the day to which I attributed it.

Strained an Eyeball While Vomiting

After they pulled the central line from my chest because it as infected, and put the PICC line, they knew they may need me to take more meds orally because there might not be as much room on the IV pole. One medicine they began to give orally was Zofran.

Zofran by IV works great for me, and I've been almost nausea-free through all of chemo and radition ... almost. Orally? Not so much.

So, early that morning I woke and raced to the sink, where there's a basin for me to throw up in and hoped that any noises I made there would wake my wife to call the nurse. Of course, I soon saw that there was nothing to worry about. I could have called the nurse. My body used every muscle from my pinkie toes to my scalp to wrench something out of my completely empty stomach, but I got nary a drop.

Interesting exercise program, though. Picture a lovely woman's voice with some light jazz in the background. "Squeeze every muscle in your body ... now harder ... don't worry about what contortions you're thrown into ... now harder ... now ... release."

"Repeat 20 times."

You know, I think when I'm done, I'm going to complain about some of the methods used by the trainers in this weight loss/dietary training regimen I've checked into.

Still, I lost 10 pounds the first month. Have you stuck to your New Year's resolution?

All kidding aside, at the end of that, I looked at my left eye and saw what you see in the picture above.

No one seemed concerned. They said, "Let's just watch it", but in about 4 hours the swelling was gone, and it was almost back to normal. In the two pictures above, you can see the difference.

What is really odd is that last week a friend back home had the same thing happen to her when she sneezed while she was cooking dinner. It's the only other time in my life that I've heard such a thing. Imagine that. In the 2637th and 2638th weeks of my life I see something happen twice that I've never seen before.

Day 14: Catching Up One Thing at a Time

There's been a haze of new developments and new activity over the last couple days.

The brain radiation is finally providing its promised "inability to focus" and "confusion." The result of this is that I blog much more slowly.

I type pretty quickly, especially if it's a teaching I'm developing. I already have all the ideas in my head, and I'm trying to put them together. The ideas come rushing, I get them all down, and while I'm typing my argument, I'm considering possible refutations, the types of people who would do the refuting, and whether the refutation is worth addressing before it ever comes up.

That system doesn't work so well now. As you can see, it involved holding multiple thoughts in your head, lining them up, then firing them down your fingers.

The problem is that I can't hold as many multiple thoughts in my head as in the past. Worse, if I thought of something would be addressed later in the document, I'd drop down about ten lines and type it in. That might be a question, a scripture, or another way to write the document.

When I get there to type, however, I just can't type as fast as I used to.

Apparently, I have a lot of patterns that I use in typing. In my mind, when I type the word "dextrous," for example, I type dex, and then -trous. They're one word on the screen, but my mind breaks into two "typing syllables," because over 20 years of heavy typing have developed muscle patterns, and I can type "trous" really, really fast.

Remember the old "macros" from MS Word? Same sort of thing. You could memorize any series of mouse clicks, mouse movements, and keystrokes, name that series, then hit a shortcut key and the computer would perform it for you.

Anyway, my macros, my printing syllables, are degraded right now, so my typing's slower.

Health Updates

The big news, to trump all others, is that on Day 13, my White Blood Cell (WBC) was 0.1.

Now that is not a lot of white blood cells. In fact, Nurse Liz this morning called it "one" cell.

However, even that 0.1 WBC does require my body to do some production. I don't think that qualifies as engrafting, but it indicates the stem cells have found their new home."

The rash's are all improving. I'm still on total body nutrition by IV, but now they're recommending I begin eating as I tolerate it.

Ok, I'm going to post this. I've fallen asleep two or three times during the post. Not everything is here, surely not even the most interesting stuff, but I'll just add a coupe of shortly.

Day 11: Losing the Dear Hickman

I better keep this moving so I don't fall asleep.

They pulled the Hickman Catheter, which folks up here on 11 North call a "central line." They did this because one more blood culture turned up positive, and they're scared that some of them may stick to tubing and be difficult to eradicate.

That brought up a host of questions. Do I just immediately go back to eating after a week off, and how are my stomach, intestines, and hemorrhoids going to handle that! And if it's bad, and I can't stay on the regular IV pain meds, then am I going to be able to handle this?

The answer? For me it was to realize that I don't actually know any of those things. I don't know that I have to go back on real food right away.

So I just passed the afternoon getting a new PICC line inserted, then getting the catheter removed.

Getting the Catheter Removed

Here's how she told me the catheter would be removed. Well, first let me let you see the catheter:

You can see where it goes into the skin. It's not a tiny tube. Then it runs along under the skin, curves over the collar bone and down into the jugular and subclavical to get to just above the heart.

All the striped areas are just reactions to the adhesive. They were changing the bandage that day.

If you have trouble placing the picture, my neck is draped far over my left shoulder. In the top right corner is my neck.

So this catheter tunneled under about three inches of skin before wrapping over the collarbone.

The lady expained that they put some sort of matrix around the tube to help it adhere to the inside of the skin. She was hoping, however, that since it had only been two weeks, mine would not have adhered much.

I closed my eyes and prepared for whatever I had to face.

She gave me lidocaine shots over a lot of the course of the tube. Then she started pulling.

I don't how long it lasted. I don't know how much pain I bore or didn't bear. I tried to be quiet, be myself, and no one complained about me later. I was already so tired from being awake for hours and so dazed from being on pain meds for days, that I wasn't thinking clearly. I took advantage of that, and I kept telling her, "I'm fine." Though sometimes I was sucking in my breath pretty hard. She patched it up.

My wife may have to correct that description tomorrow. She was there.


Wife's note: I'm inserting a short video here of the procedure.  You will see the doctor inserting scissor tips to separate the tubing from any organic material that has grown around it.  There is no sound, though Paul's face speaks for itself a bit, until Paul is told to take a deep breath, at which time the catheter is pulled out.  The procedure did not take long at all.  Here's the video:

Dazed and Confused

I haven't had Dilaudid in large doses. I understand that the Dilaudid I get, all by IV, is about 500 milligrams per dose. I've heard of people getting 30 grams, or about 60 times what I get.

I try to be careful with it, but it's started building up. The most noticeable side effect, for me, is that you start dreaming as soon as you close your eyes, and I seem to dream the entire time I'm sleeping. Worse, it's not that hard to open my eyes, see all the people around me, then close my eyes, and see an entirely different set of people.

So this evening Jerry was visiting, talking to me about something, and in my exhaustion, I closed my eyes a little bit. I was watching something on TV in my dream, and I started to comment on it. Well, on Dilaudid, you can still move when you're dreaming, so I raised my hand, pointed at the TV, which was off in the real world where Jerry and Rayette were sitting, made a comment about what was on the news. Realizing that silence was not the appropriate response, I opened my eyes, and there were Jerry and Rayetta, looking at me with bewildered, soon to be laughing eyes.

In fact, just now, I heard someone make a wisecrack about Benayah's coffee not being served down on the 3rd floor. I heard it! With no one in the room except the nurse. Since it sounded like a wisecrack, though not one the nurse would actually know, I said, "yeah," out loud. Fortunately, the nurse just figured I was talking to my computer and went on.

Anyway, I'm off the Dilaudid. So far, so good on the pain, and hopefully my thinking is clearing up.

There's a lot of funny things that have happened. I'm not going to write on those until I think I can do so intelligibly, though there's probably little hope of remembering things in any order.

Day 11: Sigh. He's losing the Hickman Line...

Paul's wife still here.  I'm going to jot a quick update so that when Paul's back you won't have an epistle to read...

Well, regretfully, they have to pull his Hickman line today.  This is Day 11.  He has had positive cultures from his lines for three days in a row.  I believe these are staph infection cultures but I'm not positive about that.  I do know he has come up positive for the Staph infection in the myriads of tests they've been running on him the last few days.  He also has something brewing under his arm for which I will post pictures here in a moment.

First, let me update you on his rash.  His rash is definitely improving.  They suspect it was a reaction to one of the drugs they've been administering.

This picture was taken yesterday.  I would say this is 2 days into his rash.  This side was later in breaking out than other areas.  The original areas are definitely clearing up, including his face.

We had Dr Dummer come yesterday to look at it.  He is the director of their Infectious Disease department and we found out this morning that he is, according to a NP here, world-renown. His advice is highly respected amongst stem cell transplant doctors all over the world.  She said they are very fortunate to have him here.  Wow!  We didn't realize!  We just casually conversed back and forth yesterday with this really nice man... he is definitely extremely knowledgeable.  He seemed to agree with the thought that this rash was probably a reaction to one of the anti-biotics they've given him.  They took Paul off of two anti-biotics and he's still on two.  (Sigh.  I realize that were Paul writing, you would now know the names of the two anti-biotics they discontinued...)

Yesterday (Day 10) he awoke with what looked like a painful boil in the armpit area of his right arm.  A boil would require white blood cells to create puss and he doesn't have any.  They did an ultrasound yesterday and confirmed no liquid.  Just a mass.   That looks infected.

As you can see from the picture, this morning it is definitely more red in the surrounding area.  The red mass itself is also larger.  They did a CATScan this morning to get a better look at it.  I don't know the results from that at this time.  I do know they are increasing his anti-fungal meds.  They found small nodules on his lungs that could indicate a fungal issue of some sort.  Not necessarily likely but they are increasing those meds as a precaution.

A doctor from the surgical team will be coming by today to look at this mass.  They are considering cutting it open, removing whatever might be necessary and packing it closed.  They will weigh this option against the non-invasive route due to low platelets and blood counts.  They've also talked about biopsy-ing it.

He is having his Hickman line removed this afternoon.  They will install a PICC line. That is a smaller portal inserted in the arm.  He has had three in the past.  All three have been removed due to infections. He's not crazy about PICC lines.  As they are very slow to remove Hickman lines here, the fact that they are doing so indicates a strong need to.  Personally I'm glad for the PICC line.  The only other option is multiple IV lines in his arm(s) and that thought makes my eyes roll in the back of my head. (The wife's version is much less medical as you can see...)

Paul has a huge transition to make today.  As of this morning he was wonderfully completely dependent on everything IV.  I say wonderfully because it has brought him much relief.  He has a continuous pain pump.  Low dosage but continual.  That will be switched over to long-lasting Oxycodone taken orally.  As I mentioned in the last post, his food intake has also been IV, providing his GI tract a break during this Mucositus time.  He'll have to go back on foods today.  His mouth with its sores has shown great improvement so we're hoping this will work for him.  Hopefully the severe diarrhea will not return.  Lastly, they are switching as many meds as they can from IV to pill form.  A post-transplant patient has to take a LOT of meds.  Again, we're hoping he can swallow fairly easily.

Paul himself, though sleeping a lot, just looks GREAT!  His energy is up.  His moods are great.  He just looks great!  The doctor this morning was commenting on the contrast.  While they are working hard on a possibly alarming infection, Paul, well - this video taken on Day 9 will show you what I'm trying to describe.  Have a look...

I'm sorry the sound quality was poor there.  I was saying in the video that he was receiving a bag of blood at the time this video was being taken.  There's just no keeping this guy down!  But no one really wants to!  :-)

I suggested he purchase a couple of these if he can find them.  What do ya think?

That's all for now.  There's a lot going on but Paul seems do be doing really great.  Thank you for all your prayers, support, and encouragements!  I'm doing all I can to help him here on this end...