Tuesday, January 31, 2012

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.









Saturday, January 28, 2012

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:


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...

video


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...








Wednesday, January 25, 2012

Day 7: A Wife's Perspective

At Paul's request I'm going to write in his place today, keeping y'all up to date. Yesterday, Day 7, was rather eventful and has left Paul, well, snoring rather loudly beside me here this morning as I type. His care partner for today, Ashley, was teasing him about pulling the paint off the walls ...

Let's see. Yesterday morning started off wonderfully uneventful with 2 bags of blood. That meant Benadryl beforehand and a little drowsiness afterwards. They had installed a continual pain pump the day before and that brought much relief to his mouth pains.

He'd developed the start of a rash that was more prominent yesterday morning. On routine doctor rounds they decided to discontinue the steroid cream and get a biopsy as the rash was more prominent on his chest and stomach. It had also extended some to his legs. (It had already been seen on his back and forearms.) They explained that this rash was a bit unusual so they weren't quite sure what the cause was.

Now for those who are fairly new to this blog, I would just like to point out that the word "unusual" gets used an inordinate amount of times when explaining things to Paul about his particular cancer. It's led me to conclude that his diagnosis of AUL - formerly thought of as Acute Undifferentiated Leukemia - is in fact properly named Acute UNUSUAL Leukemia!  Just sayin'.

Things got eventful after lunch. Though Paul doesn't have lunch per se. He has a continual drip that feeds him. This has allowed his GI track a respite and proven very relieving to Paul. His "virtual food" as Dr Goodman called it consists of all his nutrients, proteins, minerals, and dextrose.
They add a bag of lipids (fats) twice a week. They also check his blood sugar throughout the day, often resulting in insulin shots in the belly. Because he is currently Neutropenic, the areas on his fingers and stomach from sticks and shots are bruised a bit and slow to heal. Not alarming but they add to his ever evolving "I've been through stuff" look. Every once in a while one of his shot areas will continue to bleed a bit because he's also low on Platelets. In fact he'll be getting a bag of those today.

Around 1:00 pm yesterday Paul quite suddenly was overcome with fairly violent chills. He headed for bed. He also clearly had a fever at this point, though his temperature had been rising since the day before. Chills and a fever have happened twice before in this trek of his. Both times were during a Neutropenic stage and both times resulted in a bacterial infection.

He had me climb in bed with him as this brought some relief in times past. The extra warmth helps the chills subside. This, I confess, makes for precious memories for me along the way. As those who have loved ones going through difficult things will attest to, it's just nice to be able to do something! Much of this he has to endure on his own. The Chemo pumps directly into his veins only. No one else's. So, often, the side-effects are his alone to bear.

After about 20 minutes the chills were not really lessening so I got up to text our prayer support. I don't think either of us can fully express the gratitude we feel to God and to the people He's brought us (both medical and non-medical) from all over the world who are going through this with us. For me, one of my greatest comforts lies in the ability to pick up my phone, send one text to Tara (and now one to Dan here in Nashville) and from there my request will be sent to countless people who love us and are committed to praying for us throughout this time. We in turn reap the riches of their prayers.

As I climbed back in bed yesterday, I mentioned to Paul that I texted people, asking them to pray that his chills would stop. After a moment, Paul, a little groggy, said something about it being ok even if God said no. I couldn't really think of a reply to this Brave Heart so I just hugged him and snuggled closer. About 10 minutes later, I had a reply. "Honey," I said smiling, "You've stopped shaking." Coincidence? I don't think so.

The staff did come in shortly after and gave him Demerol along with some oxygen in an effort to relieve the shakes long-term. And perhaps they did. Perhaps it was prayer. Perhaps a combination of both. For this wife, I was just glad they stopped. His fever, however continued to stay up.

Around 3:00 or so the dermatologist, Dr Fowler, (should have snapped a pic) came in for the biopsy.  She, like everyone else, was very personable as well as efficient.  You should see her whip those stitches into place!  A biopsy and two stitches finished before we even knew what happened.  Well, Paul didn't know what happened.  He was sleeping thanks to the Demerol and accompanying anti-nausea medicine.

Dr Goodman, with Fellow Lauren, NP Liz and an observing student doctor. 

Because there's a history with fever/infection, the staff are incredibly vigilant and seemingly several steps ahead of whatever might try and come up.



Cultures(?) came back today, confirming that Paul has the start of a strep/staph infection. They had already started Paul on the appropriate anti-biotic earlier yesterday. He's in wonderfully good hands here.

Knowing I was going to do this update I jotted a couple fun quotes from this team.  Liz, the one with her hands crossed-not a good pic I'm afraid - is a HOOT!  She checked Paul out first thing this morning and was encouraging him to rest today.  Upon his reply of "I don't want to rest, I have things to do" she replied with, "The world will wait for you.  It's been turning a LOONNGGG time...Maybe your brain cells will work even better tomorrow if you take a rest.  Let's make today a HOLIDAY, shall we?! I LOVE an overachiever...except when they think they have to TYPE!"  All of this was met will laughter from me and attempted chuckles from Paul (remember, he has mouth issues.)

Dr Lauren Z, holding the flashlight, (I can only write "Z" because she has a long last name that's hard to learn when one is surreptitiously stealing glances) is referred to here as a "Fellow."  Here's a quick lesson on Doctor Progression.

 (The following info is compliments of Martie.  Nurse/Medical Encyclopedia Extraordinaire!)
Don't ya love the dimples!  To die for!
 There are medical students - still in school. Then Interns - first year out of school.  Still "green." Then Residence - 3-7 yrs working on a particular specialty.  Finally a Fellow.  They've done all the above.  They've chosen their specialty and study in that area for 1-3 years.  At the end of that they take a very specialized test and become an attending doctor upon completion. (In keeping with Paul's blog, for others coming along behind him to do a transplant, I'm including all this info.  Tamara we are following your progress and rejoice at your 14/14 match!!!! Who is like God?!)

Here on the transplant teams we don't see medical students, but there is a Fellow.  (Medical students observe during morning rounds but they don't interact with us.  Well, they smile when they enter and leave the room...)  Anyways, the transplant team doesn't like to have ever-changing staff.  They like the constant throughout the transplant process and I have to agree that it's nice.

So back to Dr Lauren, the Fellow.  She comes in from time to time with a very winsome smile.  She's very thorough and was in our room almost immediately upon learning of Paul's chills.  She introduced us to a term they like to use around here.  She asked him, "Are you shakin' and bakin'?"  (In reference to the chills and fever)  As I said, the entire staff here is as pleasant as they are efficient.  I would be remiss to not mention Dr Goodman.  She's straight-forward, completely on top of things, and brings all of this to our bedside with one of the loveliest smiles of them all.  She has been the one (I think) to set the tone of, "Let's completely stay ahead of the game as much as possible."  Very pre-emptive and I LIKE IT!

Hopefully Paul will be back here tomorrow and can write in more detail about Vance and Martie, the amazing nurses who've carried him through this last rough patch.  Though this patch may be a blur to him.

His "I've been through stuff" look
 Last night Vance, the night nurse gave me a "heads up" that they would move him to ICU should his continued fever go up and his blood pressure go down.  Just as a precaution.  I sent a text to my prayer support and must have fallen right to sleep.  We both woke up this morning to Paul's temperature back to normal and Vance teasing Paul about remaining asleep even when she had him sit up for something. We slept well and he's feeling much better this morning, though his temp is teasing us, fluctuating between 97-99.  Still, it's all good!

New comfy sheets
Our "Vector" having fun where she's staying




Not just hanging on, but actually THRILLED TO DEATH!





Monday, January 23, 2012

Day 6: Update & Today's Inspiring Video

Let's start with the video, and I'll give you the update on me afterwards.

This video is from the founder of TOMS shoes, Blake Mycoskie. He started a "sustainable" charity. The way to do that, it appears, is for his company not to be a charity, but a for-profit company. Basically, they sell shoes, but for every pair they sell, they give one away somewhere that it's needed. (I assume that's usually in a third-world country.)

This is the kind of idea that stokes me. Giving is good for the soul. I'm all for giving. I'm blessed by people who are generous, abundant givers.

But I love good, practical ideas, too, and this is a GREAT one. Blake's idea is not dependent on giving or on a good economy. It will do good and give as long as the economy is doing well enough that people want to buy shoes.

There's a book advertised in the video. I'll bet it's a good one. However, if you want to know more, you don't have to buy the book. There are dozens of YouTube videos on this guy.

Also, I found out about him from the article: "7 of the Most Inspiring Videos on the Web."


My Health Update


Judging by the reaction the nurses give when they look at my mouth, my mouth sores qualify as really bad. I have a couple sections back on my pallet that are oval, about a half inch wide and three-quarters of an inch long. The ovals are about half covered in blisters. Well, blisters is what they look like. I have others on my lip, and sometimes when they check my temperature, the thermometer sticks to them.

I keep imagining that this is what it feels like to come crawling in out of the desert, your lips and mouth completely parched.

Don't feel sorry for me. They give me pain medication for it. Guys crawling out of the desert don't have that.

Last night my temperature slowly worked its way up to 99.0 across the course of the night. I don't run 98.6 normally. I run 97.6. So it took about five readings to slowly get up to 99. That was scary. Fevers are a problem. I'm back in the 97's today, so that's gone, though Dr. Goodman says they may run a blood culture anyway.

My nose bleeds from being dry. If I blow it, I can always get blood. They told me not to blow my nose at all. I moisturize it with saline solution, and I dab at it if it runs a bit.

Definitely our best hospital picture so far

The hemorrhoids are doing better because I've been taking Imodium. That dries everything up. I'm really glad not to have to go to the bathroom. They have to make sure I have a bowel movement here and there, so I can't just take it indiscriminately, but preventing diarrhea is something I am really, really glad for.

Let's see, I also have a mild rash that they've prescribed a steroid cream for. The steroid cream can't be used on my face because it's too strong, so I'm just using lotion on that. Basically, all my skin is dry and sensitive.

Normally, the question would be, "Are you getting enough hydration"? My answer has to be, I sure hope they're giving me enough because they told me to avoid drinking except to take pills or if it's really needed for comfort. I can rinse my mouth all I want, but no drinking.

The other thing they're doing is checking my blood sugar every 6 hours. The IV nutrition they're giving me puts sugar (dextrose?) directly into my blood stream. Apparently, that's difficult on the body, as it's not used to processing the sugar that way. So they prick my finger every 6 hours, like diabetics do, and if my blood sugar is over 151, they give me a shot of insulin, which I take in my belly.

Jerry told me a few months ago that if there's an option, I should always take shots in my belly. There are less nerves down there, and sometimes I can't feel the shot at all. I have to ask if they really gave it to me. Mostly, though, it stings a little, but less than even shots in my arm. My dad was in the military. I'm used to getting shots in my arm.

A friend of mine in Ireland wrote me telling me about what he was going through at this stage of the game. His Hickman catheter—the ports I have up near my collarbone that let them give meds and take blood—had gotten infected and been removed. He was getting poked regularly and using a normal IV connection in the arm.

I won't even tell you about the other things he told me about. When I read them, I was ready to cry. I can't imagine what this blog would be like if I was going through that.

Uh, yes, I can imagine. It wouldn't have any posts for the month of January.

I have more stamina for walking than I did a couple days ago. Isn't that weird? I sleep more, though, and writing a blog can wipe me out for an hour or two.

Finally, because of the mild rash and because I have something of a tan from the radiation, I feel like I look like a wizened old man in the mirror. I've lost weight, too, so that just enhances the effect. (I've kept my New Year's resolution to lose weight, have you? Lol.) I don't know if you can tell or if I'm just being overly self-absorbed, but here's a picture:


I couldn't smile because it hides all the bumpiness on my cheeks.

Really Fun Inspirational Video


And finally, here's one of my favorite inspirational videos. This happened several years ago, and I've probably already posted it on the blog at least once.







Saturday, January 21, 2012

Day 4: Fun Blog Today

Okay, you have to see today's videos, especially if you've never heard of Nick Vujicic!

First, though, I do have one story from this morning. The nurse asked if there was anything new with me, and I'm having a little bit of itching, especially on my back. I'm sure my skin's just dry from the radiation and chemo (so are they).

So the nurse asks how long it's been itching, and I tell her just since last night. Then, not thinking, I pull my shirt up to reveal:


The nurse was suddenly horrified, and I couldn't figure out why.

"This is just since last night??!!" she cried in alarm!

Suddenly, I realized. "Oh, no! I don't mean the lesions!"

She gasped and said, "Don't ever do that to me again!"

Oops, sorry.

If you aren't one of those aware that my leukemia began with tumors on my back, those are just the leftover marks from the original tumors. The tumors shrunk and disappeared in the first 4 days of chemo back in July, but they left those areas on my back that look like birthmarks.

Nick Vujicic


Nick has an unfortunate last name, and there's a couple other things that haven't been perfect in his life, but as far as I can tell, he's doing better than most of the rest of us.


Here's another video. He's also got an inspirational site at LifeWithoutLimbs.org









Friday, January 20, 2012

Day 3, Part 2: Really Good Day

I'm really glad to add this blog today. I didn't like this morning's very much. It seemed like a lot of complaining, though I'm trying to journal what's happening, so I hope it's not really complaining.

Anyway, I was amazed by a really good day so far. People have been wonderful today! Nurses, doctors, janitor, Jerry, nutritionist ... I can't remember all the reasons people have come in here. I'm not sure what it was, perhaps just the right combination of cheer and snappy humor. The janitor and I got to talking about fasting and especially about struggling through the third day of a fast.

That's Dr. Greer at the end of the bed back in October
And Dr. Greer just came in! I had given him one of my books, so he was just saying thank you and checking on me. I think he actually read it even, based on his comments!

Yesterday, my wife had a conversation with Little Richard, downstairs by the elevators. Yes, really! Little Richard! (I should probably know more about the guy, but all I know is that he's a musician.) He's being treated for something here at Vanderbilt.

My wife recognized him, but he actually struck up the conversation with her, not vice versa. Just picked her out of a group of four or five people at the elevator and started talking to her!

The conversation was short, obviously, but he gave her a book—about him, not by him—and signed it.

This is the radiation mask they used to hold my head in place for brain radiation, exactly molded to my face.
One of my other conversations this afternoon was with Dr. Strickland. I got out and walked 5 laps, which is 1/5 of a mile, and it was hard. In fact, it was so hard that on the last lap, I stopped briefly at the nurse's desk to lean on it and get up the strength to walk the last 30 feet back to my room.

Dr. Strickland came by just then, and he wanted to help me to my room. He kept asking whether I was okay, and I assured him I was just gathering strength. "Honestly, I'm not worried about passing out at all," I promised him.

"Yeah, but I am," he answered.

He let me walk back to my room, though.

So long distance has gone from 2 mile to .2 miles in 3 days.

This is Paul Pavao, signing off from the Vanderbilt Fun Center in Nashville! Good day to you!














Day 3: The Going Gets Rough

I suspect the going isn't really rough yet. I think I'm just having to gear up for the first time.

My mouth gets more red and inflamed each day, though I don't have any actual sores yet. The nurse told me that the salt and soda mix may be too harsh already. I switched to "miracle mouthwash," which has lidocaine, a tiny amount of benadryl, and I think Milanta in it.

It's a real effort to get up and go to the sink to rinse, probably much like having the flu. However, if I fall asleep for a couple hours, my mouth is dry and burning when I wake up, so there's a lot of motivation to get up and take care of it. It may be inevitable that it gets worse, but no sense compounding the problem.

In a few minutes, they're going to give me a pain pump so that I can hit it and give myself pain medication whenever I want. Usually, that would be morphine, but morphine doesn't work on me. The last time I got morphine, they gave me two doses because my shoulder was out of joint and the doctor needed to set it. It didn't relieve any pain, and it confused me so that I could no longer deal with the pain myself. I really don't want to try that again.

So this is Dilaudid. It's pretty potent. I remember how well it worked last time when I was having terrible cramps and nerve pain from receiving Cytarabine in my spinal fluid. It comes in through the IV, so it goes into effect in about 10 seconds.

I don't need it right now, but it will probably be very helpful for hemorrhoid and going to the bathroom issues. I wish that getting IV nutrition without eating meant that nothing had to go through my bowels, but it doesn't. They want me to be at least a little regular. I don't know how all that works, and I really don't want to spend any time thinking about it.

I seem to sleep okay, even if it's all in one to three hour stints.

Because I'm sleeping in naps, the easiest time to get up and exercise last night was at 2:30 am! It just worked out that was when I felt most rested. I walked a half mile.

The hemorrhoids can affect the walking, and they may do so more over the next couple weeks, so I have some exercises in bed that I can do as well. The big thing, the nutritionist says, is to make sure there's enough exercise that I'm not losing all my muscle and only maintaining weight by increasing fat. The other thing is to make sure there's some harder breathing to prevent pneumonia.

Achieving harder breathing is easy. That just takes getting out of bed and walking to the sink at this point :-D.

I'm not walking quickly, that's for sure, but I'm not quite at "trudge" yet. I think "trudge" is coming soon, and the laps will keep decreasing for a while. Getting around takes a lot more effort than it did just two days ago, but putting one foot in front of the other is not really that bad once I'm up.

The changes from one day to the next seem pretty rapid right now, so I went ahead and described them for those who are interested and for those who are going to go through the same thing themselves. I won't do that every day, as that hardly seems beneficial.

In fact, now that everything takes a lot more effort, we'll see what's best. Maybe I'll just give you a very short update each day, or I'll just blog every few days. Anyway, if you don't hear from me, it doesn't mean I'm deathly sick. It may just be normal fatigue for my situation. Just a blog like this tends to sap all my energy so that I have to nap.

In the future, I'll also try to find something interesting that isn't just discussing my problems.

It's still all good. People are still serving me and saving my life. This is still God's path for me. I keep thinking of what martyrs for Christ have endured through the ages and what others in this hospital are enduring, and I remember that I have hundreds of reasons to be grateful and not a single legitimate reason to complain. I am not a suffering man, but a well-loved and extremely blessed man.



Thursday, January 19, 2012

Day 2: Vacation's Over

I still can't say I'm suffering much. This is still not as bad as the flu.

One of the problems with having things go so well until now is that I've obviously become kind of wimpy. A little discomfort, and I'm rushing around looking for remedies.

I never was a very tough sick person. Whenever I get sick, I'm prone to speaking softly, in a groaning voice, and asking for everything. "Can you get this for me?" "Could you get that for me?" If my stomach's nauseous, then I just don't want to move.

Maybe my wife's card should have said, "You know what they say: 'When the going looks tough, you make it look easy (because it is easy).'"

Beware, little more graphic here ...

Since last night, it's not so easy. My stomach is constantly upset or in pain. I have diarrhea, and going to the bathroom burns. (Maybe that's chemo coming out; as I'm eating very blandly.) I'm much more tired than I was.

My mouth's the same. If I go to sleep, I wake up and my mouth is dry and on fire. Rinsing with salt & soda still helps a lot, and so does the Biotene dry mouth gel and the pectin throat lozenges.

For those of you that may be facing this in the future, the pectin throat lozenges were especially helpful while I was walking. Also, I take L-glutamin, about 4,000 mg per day, at the advice of a friend in South Africa who is also going through similar treatments. He says he hasn't had any mouth sores since taking the L-Glutamin, though I don't know how much he's taking. (I did tell my doctors I'm taking it.)

I got up at 4 a.m. after a pretty solid 8 hours straight of sleep except for a couple brief breaks for the bathroom and vital signs. They wake me up every morning at 4 for vital signs, so it's a good time to plan the start of my morning. I force down a little breakfast to settle my stomach, then I rinse my mouth, dress, and walk.

I was still able to walk a mile, and I biked two miles very slowly, though that was too much. My fingers were tingling like the old days when the leukemia wasn't in remission. Back then exercise meant there wasn't enough blood left over to service the limbs, so my calves, forearms, feet, and hands would tingle from lack of circulation.

Fortunately, this week's Through the Bible in a Year commentaries are done because this blog is all I can handle at the moment. Time to go back to sleep.

Thank you again for all the prayers. I'm not expecting to cruise through all this with no suffering at all. I just want to live in the grace of God, always know that all these things are working together for good, not bad, and to be pleasing to God in all of this. I'm still remarkably fortunate, even if this gets much, much worse, and I still have the best support system of any leukemia patient ever, I'm sure.




Wednesday, January 18, 2012

Day 1: Pressing On ... With a Little More Effort Required

Well, I didn't get that second blog up yesterday, but it will be worth it. Lorie, my wife, took a video of the transplant process. It was nothing like what you'd expect.

Now I've been there, done that, got the T-shirt!

Rather than try to explain it, let me let you see the short vids, which I uploaded to YouTube :-D. I would have just uploaded them here on my blog, but when I do that, it seems a lot of you can't see them.



Then the next picture is my favorite one from yesterday. Lorie bought a big helium birthday balloon and a dragonfly balloon. She set it up behind me, and we made a party of it, as you may be able to tell from the video, although I'm kind of distracted sending and answering texts back to Rose Creek Village. Jerry was there, too, and you can see him in the first video if you haven't seen him yet. He brought me his favorite Sonic shake, at my request, shortly before the transplant.



Okay, I guess that's two pictures, not one.

After Benadryl
I was a little out of it for a while. Benadryl is part of the pre-transplant preparation, and they gave it to me by injection into my IV line. It took about 3 seconds to hit my brain, and make me half-comatose, though there was enough time between that and the actual transplant for me to be awake enough to enjoy it a bit.

Afterwards, there was really just more sleep to report. The transplant took place from 4:18 to 4:35 or something real close to that. I then basically slept until 5 this morning.

All that sleep let my mouth dry out, and I have a mouth sore now. I did have to get up for vitals and trips to the bathroom, and I rinsed my mouth on every trip with soda and water, often following with a moisturizing gel, but it wasn't enough. The sore's just barely painful, though, so I can't complain. With as many people as are reading this blog, at least one of you is suffering through a much worse mouth sore, I'm sure. I remain a very fortunate, blessed person.

Jerry and Rayetta at the transplant
I got up at 5 am, and I forced myself to have a cup of yogurt. My stomach was really upset, but my experience so far has been that if I keep some food in my stomach, it does okay (assuming it's the right food!). Though I had to force that first bite down, it immediately relieved my stomach. I went and walked, and I found I was still able to do a 17-minute mile. So I biked a little, really slow, but more than a mile, then gently strolled and stretched for about 15 minutes afterward.

I still have more energy than I really ought to. Thank you again for all the prayers!

And for those from Rose Creek Village who sent me soup. I have never gotten so much pleasure out of food in my whole life. They settle my stomach for an hour or two at a time and warm and relax my whole body. They probably drop my blood pressure, they're so relaxing. You have to be mildly sick to appreciate food that way. I can't believe how good those soups have felt.

The transplant cooler

Here's a couple more pictures, just for fun. I'm a very blessed man.

One of the eleven syringes, three from one baby, eight from the other
Katie, the nurse practitioner, with the syringes from one baby
Ellen and Katie getting everything ready







Tuesday, January 17, 2012

Day 0: Just Barely

Well, it's day zero. My "new birthday" as they like to call it here. I'm going to be born again physically this afternoon, so to speak.

A bone marrow transplant can literally change your DNA. It will change your blood type, though it can change it to the same one you already had. You don't begin to look like the person whose marrow cells you receive, but apparently the reason that the new immune system becomes less and less prone to attacking your body is because your body's DNA slowly begins to match the new immune system!

Napping
I'm up at 2 in the morning because I went to sleep at 7:30 in the evening. Somehow, I managed to sleep most of the way through that time, with perhaps only one interruption until 12:30.

Since mucositis doesn't sleep, I got up at 12:30 and took care of preventative maintenance. I made soup for my stomach, rinsed my mouth with a soda/salt solution, had a pectin throat lozenge for my throat, and I went ahead and walked a mile. Not easy!

At 12:30, the reason they woke me up was for vital signs. They do that every 4 hours, so there will always be a midnight and 4 am visit.

My blood pressure has been a problem. It peaked at 173/108 yesterday morning. It got all the way down to 138/88 at one point, but at a 10:00 reading this evening, I was back at 150/100. The 12:30 reading was 161/100. Not getting better.

The "care partner" went to ask about my blood pressure, and that's when I did the soup, the mouthwash, etc. I also walked, wondering if the walk would help some. It helped some. After the walk, my blood pressure was 151/98.

The nurse said, "I don't understand what the problem is with the blood pressure."

I have some thoughts.

My wife got me this card.
Now, I'm not a doctor, but if a person is going through stress at home, say his kid is getting in trouble and flunking out of high school, then don't we say, "No wonder his blood pressure is high"? If a man has financial troubles at work, is working late, and his business is failing, wouldn't we say, "No wonder his blood pressure is high"?

Or, let's say that I was just told, "You may have leukemia," then the doctor left the room to go consult with other people before coming back to give me a final word. Wouldn't you expect my blood pressure to be "through the roof."

So, let's see. Here's some ideas I might have for the problem today:

  • I have been given three times a lethal dose of radiation that only didn't kill me because it was spread over 11 days and half of it went directly to my brain. The radiation isn't still working, but my bone marrow and blood are full of dead and dying marrow and blood cells with radiation damage.
  • I have been given a powerful, directed poison that should be just completing its work of killing almost ever marrow cell in my body, plus destroying the mucous lining in my mouth, throat, esophagus, stomach, intestines, and rectum.
  • I have a stem cell transplant today that marks healing for me, but I've been told has a 10-20% chance of killing me in the next month. The odds are only that good because I'm so healthy.
  • After I manage the next four weeks, then the complications afterward only have about a 10% chance of killing me in the three months following. After that, the prognosis is really good ... assuming I don't relapse.
  • Odds of relapse? Impossible to calculate. Not enough data. We can be confident that there's a better than 50% chance I won't relapse, but it's certainly not 100% (except that I think all those things are in God's hands).
  • To help take care of the risks, I'm taking a number of medications with side effects, and I'm taking a couple (yes, only a couple) that are to manage side effects). One of the medications increases blood pressure!
  • Over the last three days, I've slept in 1-2 hour snippets. This evening I may have managed to pull off two naps of 2.5 hours.
  • My kids are three hours away and will be for another six weeks. The last time I saw them I couldn't hug or hold them, but could only talk to them for five minutes or so. I email and text the older ones.
  • My day is full of little things that I have to do and can't forget. Rinse my mouth, take pills, eat something soothing for the stomach, exercise, keep drinking, keep urinating.
  • I'm helping friends with some pressing financial problems by phone and visits to the hospital. Tax time is coming up, and I've always done the taxes for my business and for a couple others, and I don't feel like I have a good accountant back home to turn them over to.

I don't mean to complain. In fact, I'm not complaining. This is what God's got for me, and I can honestly say that I'm really glad for it. I'm not just accepting it; I think this is a great adventure.

But if we're looking for reasons that my blood pressure might be 150/100, which is 10 points over on both the high and low side—or ever 161/100 or 173/108—I think we may not have to wonder.

Again, I'm not a doctor or anything.

I'll post again later, probably after the transplant. This is Day 0, part 1.

That's assuming I'm not sick as a dog afterward. Jerry keeps telling me the stem cells are going to set me on fire.











Monday, January 16, 2012

Day -1: How Can This Be?

I'm so much better this morning! How can this be?

Last night I didn't know whether I'd be able to sleep. I laid down, and my whole right cheek was just kind of sore. I felt very hot in my abdomen. My tongue burned a little like it was ready to break out in sores.

I did everything I knew to do. I drank a little. I'd been eating very calming type meals, several and small through the evening. I rinsed my mouth a couple times with the soda/salt solution they gave me. I used Biotene's dry mouth gel several times. I sucked on my throat lozenges.

Maybe I was doing too much!

I woke up repeatedly through the night because they're giving me fluid at a rate about a gallon and a half a day directly into my bloodstream, on top of what I drink orally. On top of that, I had a defective pump on my IV pole (there's three total), and it would start beeping every 1 to 2 hours. They just got that changed this morning.

This is all besides the taking of my vital signs and the urine specimens I have to give them. Both of those are every four hours, but they're staggered, so I had to get up at 10pm, 12am, 2am, 4am, and 6am—besides all those other things I listed.

When I got up, though, I did all the maintenance things that I wouldn't have been doing had I slept straight through. I rinsed my mouth, used the gel, drank a little to settle my stomach, etc.

I think I got two naps of over 1 hour last night, one of them almost the full two hours. I got up for an hour on purpose to finish editing Wednesday's Through the Bible blog post and to answer emails. That was enjoyable, and it relaxed me so I think that was the point I slept two hours straight, from 2am to 4am.

I got up at 5am and went walking. The first half mile was hard, and my calves were burning. Both the previous days, it was so easy. I walked the first half mile in ten minutes, and then I felt better, so I burned through the next half mile in eight. Then I felt better. Not as good as yesterday, mind you, but better. So I did a mile slowly on the bike, though not as slowly as I thought I'd have to, then walked a casual 20-minute mile afterward, though it took closer to 25 because I had to get weighed and get my IV pump fixed twice during the walk.

Things are not just smooth in the hospital. I like to make sure my walks are finished before 6am, and preferably before 5:30, because you're not walking any 8-minute half miles in the hallway during the day without knocking down nurses, equipment, patients, and maybe food carts, too!

So here I am, at 7:30 am, and my cheek doesn't burn, my tongue doesn't burn, and my stomach is a little upset, not bad at all. I had a couple blueberry muffins, and I raided the hospital refrigerator for a bottle of vanilla-flavored Ensure, which tastes great and seems very mild on the stomach. The walk totally restored my energy.

I also got several really enjoyable emails. My friend and advisor in Ireland, whom I've been emailing for at least three months, told me about Irish country football. He sent me a link to their rules, and now I'm all excited about playing at least one game of that with the kids back at Rose Creek Village when I'm better this summer.

And I'll be able to play, too. I bought a sun protection hat and sun protection sleeves that will allow me to have some ventilation in the summer heat without being affected by the UV rays, which can cause Graft-vs-Host disease (for the rest of my life!!! Aargh!!!). I'll add gloves when I find some I like. For the winter, I'm just going to use my standard winter gloves.

I really don't want to be wearing sun block all the time. I'd just as soon have athletic sun-protection clothing.

What's neat is it's the kind of thing that runners of the Badwater Ultramarathon wear. The Badwater is still the major recovery goal for me. We'll see, that's a pretty drastic goal, but I'm not giving it up yet. For right now, it's a 5K in the summer with my wife. Since I walked three miles total yesterday and biked another, I have some hope that's a highly realistic goal.

You can see the sort of outfits I'm talking about and get a feel for the ultramarathon in this little trailer.


Good day to all of you! Thank you again for the prayers. A nurse practitioner saw me this morning, saw how well I'm doing, heard I walked two miles, and suggested I give lessons for the other patients. It's not lessons and wisdom I have, it's the best support group any cancer patient could possibly have. (Although the part of that support group that is other cancer patients have given me a lot of lessons and wisdom.)






Sunday, January 15, 2012

Day -2: Fatigue Setting In

Well, I've had my last dose of chemotherapy, hopefully for the rest of my life.

Today is not the same as yesterday. I worked on a Through the Bible in a Year blog this morning, and it about knocked me out while I was sitting up.

Not that I can complain. I laid down for 45 minutes or so. I couldn't sleep because they were giving me Lasix again to keep the chemo from pooling in my bladder and causing bleeding. That means a trip to the bathroom every 15 minutes. The rest felt good, though, so I got up and walked a mile in the hallway, which was no problem.

So my brain may be getting exhausted, but my body is apparently doing just fine. I had already done two miles walking early this morning, plus a mile on the bike. The nurse checked my pulse right after I walked the mile, and it was only 80. So, like I said, I have nothing to complain about. My body's doing great. I just can't continue the work schedule I've been trying to push on myself the last couple days.

The funniest side effect I'm having is the hiccups. They come regularly, pretty much every time I eat or drink anything and at other random times. They don't last long, less than 5 minutes each time, but they're pretty strong. One nurse told me that hiccups are very common with these chemotherapies, and some patients need treatment to make them go away.

So apparently all the things I'm doing to combat mouth sores are working so far. I do have a bit of a stomach ache, which is also related to the mucositis, I'm sure. They're giving me Zofran for that. They keep promising me Tums, but it just hasn't come.

For the mouth sores, I'm doing all the things they say. Keep your mouth clean and rinse with baking soda and salt regularly. But Biotene also makes this great dry mouth gel. It noticeably helps. I'm being careful what I eat, just very gentle foods, and I've got throat lozenges with pectin, which I think is supposed to soothe and coat the lining of the throat. None of that reaches the stomach, of course.

Fortunately, I'm not doing this alone. I have advice from people who have gone ahead of me. I got an email from a man in South Africa with Blastic Plasmacytoid Dendritic Cell Neoplasm, and he said he started taking L-Glutamin and quit getting mouth sores. His doctors were okay with it, and I told my nurses about it. No one's stopped me. Hopefully that's helping, too. I don't know anything about it, nor even how much I need to be taking. It is an amino acid, one of the most common in the body, so it shouldn't be dangerous, and I was careful to ask for a trusted manufacturer. Many manufacturers of herbs and supplements don't label their products correctly. Or rather, it would be better to say that they don't bother to put into their capsules what they say are in them. It's possible to buy a bottle of herbs that doesn't have one grain of the herb you want in it. Let the buyer beware!

Anyway, that's my news for today. I thought I'd get you caught up. I'm doing remarkably well. Jerry came to visit me, and he's doing great, too. It's such an answer to prayer, and I'm so grateful!

So while y'all are doing all this good, the fellow in South Africa is named Richard. Pray for him, too. His transplant is due in February sometime.

Mine is day after tomorrow!






Saturday, January 14, 2012

Day -3: Early Start

It's 5:30 am. I've been up for nearly two hours. I've walked two miles, looping the hallway on the 11th floor, north tower, of the Vanderbilt University Medical Center, 26 laps to a mile. Nonetheless, I got the through the first mile in 16 minutes, did the exercise bike's mile in 3:30, then finished out the last mile, with a couple stops for water and a throat lozenge, in 23 minutes as a cooldown.


The nurses say I looked tan (from the x-ray radiation), and the shirt makes it look like I'm on a Carribean vacation.
So now it's time to blog, though it's the Through the Bible in a Year blog posts I need to get to. I have a friend coming for most of the day, so I won't be able to work on it later today, and I'm only one day into next week. I really want to be ahead. My left thumb already shakes when I hold things, and I've only had one day of chemo and no Cytoxan yet. Who knows how much I'll be able to blog next week.

Cytoxan and the Lasix Experience


The Cytoxan must be a doozie. The one thing they've worried about is making sure it doesn't pool in the bladder and cause uninary tract bleeding. Apparently, that bleeding can be pretty bad, and the chemo will be rapidly taking away my ability to clot.

The remedy? Put 225 ml/hour of fluid, or about a quart every 4 hours, directly into my blood stream before they give it to me. Make sure they have me running to the bathroom regularly, then give me the Cytoxan, and then give me Lasix afterward. If my kidneys don't take care of flushing all that fluid out of my bloodstream quickly, the Lasix will force them to.

(You can read about my July experience with Lasix if you want, but beware of TMI!)

A friend told me that Lasix is a lifesaver for her, preventing terrible fluid buildup in her body. The nurse explained that it can be really important for heart patients, too. For me, it's a real unpleasant experience.

On the other hand, urinating blood isn't a very pleasant experience, either. I think I'll just happily endure the "Lasix experience."

On TMI


A very dear friend wrote me and suggested that one of my previous posts was almost TMI (Too Much Information).

For those of you that find it to be TMI, just remember that this blog gets found by searches for "blastic plasmayctoid dendritic cell neoplasm," "bpdcn," "leukemia treatment," "bone marrow transplant," and similar search terms several times a day. A number of people who read this blog regularly are going through the very same thing I'm going through or worse.

I really expect that some of what I write on here is TMI for friends and relatives, except where they're just enjoying laughing at me (which I'm happy for), but I'm also pretty sure it's not TMI for any fellow patients, who have thought and felt all those things.

An extended hospital stay will do a number on your sense of modesty.

And that may be good. Any lady that's been through childbirth knows that there's some modesty you're just going to have to give up. Even if you manage to have a birth with only females present, you're still in for an rather messy experience, significant nudity, and a belly that instantly becomes a flattened basketball.

In return you get your greatest joy and biggest problem, both at the same time.

It's all designed by God.

Okay, off to the other blog. Good day to all of you!






Friday, January 13, 2012

Day -4: Chemo Underway ... on Friday the 13th!

Are you superstitious?

I'm prone to being superstitious. I once burned a pair of dice as a teenager because I thought they were giving a disproportionate amount of high numbers. I believe I'm a somewhat intuitive person, and intuition tends to draw conclusions from big pictures ... an excellent route to superstitious behavior. Intuition is good, but it's also good to test your intuition with a little logic.

Anyway, I trust God. If God put me in here on Friday the 13th, then I think that's awesome. It does have meaning for me, but not negative meaning.


I got my first dose of chemo. It was Fludarabine. Tomorrow they will add Cytoxan.

The Fludarabine seemed sort of anticlimactic. This is supposed to be the big whammy, and I got this little tiny bag, less than 1/3 the size of of any previous chemo bags I've gotten.

The fludarabine is the little bag on the right.
I was supposing it was just less diluted. All chemotherapies, as far as I know, are diluted in a solution. On the other hand, there's a rating for how much they're giving me. They're giving me "25mg/m2/day." When I got Cytarabine, that 25 was a 6,000.

Maybe Fludarabine's stronger.

I'm still doing good. I have some uncomfortableness—I can't call it pain—in my esophagus that is probably a sure indication of the beginning of mucositis, which Dr. Jagasia tells me is the major issue to deal with right now. I'm loaded up with lozenges, bland food, dry mouth gel, and such like to deal with mucositis. We'll see how it goes.

My temperature readings today have been 97.6, then 98.6, then 99.1. I don't like seeing that, but maybe it's another product of the steroids.

Speaking of steroids ...

Steroids


I've had to wonder the last few days about whether athletes who take steroids have any idea of their power. I've been shocked by all the things it affects:

  • Sleep. I went an entire night without sleep without any apparent tiredness.
  • Blood counts. My white blood cell counts more than doubled, and my neutrophils jumped from 660 to 5050 in one day, then to 5880 the next.
  • Appetite. They're an incredible appetite booster.
  • Blood sugar. My blood sugar counts jump from my normal 105 or so (high, barely in normal range) to around 175 when I'm on steroids.
  • Skin. Steroid creams are an excellent cure for rashes.

That's what I know about steroids. I'm sure there's a lot more.

It's really no surprise to me that steroids cause long term problems.

That's it for today!








Thursday, January 12, 2012

Day -5: Radiation Over, Chemo Coming

Warning, there's a rated R section coming up in today's post. I'm trying to be somewhat complete in documenting this process.

I'm writing this in between today's two radiation doses. So far, no side effects other than some throat dryness, and an occasional stomach pain that might be mucositis. In other words, it's like a mouth sore, but it's in my stomach.

That can be an issue. Bland foods, which is what I was told to start eating today anyway, and anything soothing to eat is okay. Biotene actually has a dry mouth gel that it's okay to swallow. I've been using it already, but I'll probably swallow just a bit on purpose for my esophagus and stomach.

I also found a throat lozenge with pectin that is just soothing.

The goal is to prevent all the mouth, throat, stomach, and intestine linings from drying out when the chemo starts destroying all the mucus that is supposed to be in there. It'll all come back, but for a couple weeks, that's one of the most painful side effects, even though it's not really dangerous (I don't think) unless it leads to infection.

This Is the R-Rated Part


So I go in this morning, and Dr. Tenenholz, the radiology oncologist, says, "There's one thing I forgot to tell you about. Sorry."

That didn't bother me. They're treating me. I'm okay with it. I'm easy to get along with.

He then explains that one place that leukemia cells like to hide out, where you don't notice them, is in the testicles.

"Uh oh!" I thought.

He hadn't forgotten to mention it. Way back in October, he mentioned that, the first time I met him. He probably forgot. He's the doctor. I'm the guy who was told that they would want to point radiation right at his testicles, making sure to tape back another body part to keep it out of the way.

I definitely did not forget, though I was hoping he would.

I'm definitely not going to blog about that procedure afterward to explain how it's done (nor is my wife going to take any pictures for Facebook!). I have no idea where they do it nor how they get that huge machine pointed just where they want, but I'm not going to explain any of that (for which I'm sure you all are glad). So I'm describing it now so I never have to describe it again.

It causes instant sterility, which the doctor said doesn't matter because the total body irradiation has already caused sterility anyway. (No problem there; we're done.) And, uh, just in case you're wondering, as my wife and I might, it doesn't cause any other related problems.

Anyway, I have to go through that right after the last dose of total body irradiation. Modesty issues make me want to ask to be put to sleep for that procedure, but I'm not going to. I'm just going to face the shame of it all. It would be a lot easier if I was 12 months old and in a diaper! I'm sort of out of the innocent nudity stage; I'm out of the Garden, and I like the fig leaf when I'm in public ... or with doctors in a hospital room.

Another Hospital Stay Change


The doctor told me this morning that I'm definitely not getting out the day after the transplant, which is Tuesday. He said I'll be in the hospital 16 days or so, and that was while he was forgetting that I'm a cord blood transplant. That will probably add another week.

Oh, well. I really don't mind the hospital stay. I wouldn't be able to see my friends or kids anyway until my blood counts come back up. I have my computer, and the hospital bed is really great on my upper back, which requires a lot of massage. (I really need to make those videos on taking care of your lower and upper back. I've done a lot of study on it, and they'd be free.)











Wednesday, January 11, 2012

Day -6: Steroids and Still Going Strong

We're getting up around 5:30 each morning, then leaving the apartment at 6:45 am. I get anti-nausea meds and fluids at 7:15, then radiation at 8 or 8:30. Then we talk to the doc briefly, go home for lunch and a nap, or we stay awake and get things done (like blogs and emails and house cleaning).

It's a 15 or 20-minute drive to Vanderbilt. We go back at 1:00 pm for more meds and fluids, get the second dose of radiation around 2:30, then go home. My wife does all the driving. She has me banned from driving now that the radiation has started, though she's often tried to ban me from driving over the last six months.

Admittedly, most of that was justifiable.

Tomorrow's the last day of radiation. Friday morning I check into the hospital before 7:30 am to begin getting the chemo. I'll stay there until Wednesday morning, the day after the transplant, when they'll determine my condition and decide whether they can send me home or not.

Steroids


I haven't slept at all since my nap yesterday. I laid in bed for hours last night. It was restful, I was tired, but for all the thinking, praying, and daydreaming I did, I never came close to going to sleep. I finally gave up at 3:30 am, got up and started on next week's Through the Bible blogs. (I love the start of Matthew!)

The fact is, though, that all that laying down did the job. I've been fine all day long.

I thought maybe it was some weird side effect of the radiation, but the nurse and doctor told me today that it's not the radiation; it's the steroids they've been giving me to help me handle the radiation.

So tonight the nurses have provided a solution that worked for me the one time I tried it in the hospital. It's a combination of Benadryl and Compozine (sp?). We'll see how that goes. I don't want to stay awake several nights in a row! I literally didn't sleep a wink!

Worse, I have a couple games of "Chess with Friends" going on my iPhone, and one of them is really tough. It's a great game, and I'd love to pull it out. Staying awake all night isn't going to help me do that!

Exercise Plans


My daughter will feel a little better about her double-jointed picture on my blog the other day. I'm paying myself back for her.

My wife sneaked a video of me doing some exercises in the hospital room today. It's embarrassing, but I'll let you see it, thus giving my wife permission to put it on Facebook, which she was avoiding because it was clear it embarrassed me some.

That's not to say that she didn't send it to all my friends and show it to the doctor as well!

Here it is, and then I'll explain what I'm doing:

video

It's look like I'm doing Tai Chi, but I don't know how to do Tai Chi. I'm just using the Tai Chi I've seen as a mold.

Here's the point. Sink down in a low squat or horse stance and stay low, even when moving. (A younger guy who hasn't been repeatedly poisoned over the last six months could go a lot lower than me.) That works the quadriceps and buttocks.

Then, just having fun and doing whatever Tai Chi things I can think of, I strongly tense my stomach, and as I turn, I put all my effort in my core muscles to make each turn of my upper body.

Finally, when I extend and retract my hands, I'm not training for punches, nor am I gathering Chi, though sometimes I use "gathering Chi" hand motions. I'm tensing and working specific muscles.

I have another week in which I'm not supposed to lift anything heavy. This sort of exercise makes up for that without blowing out the Hickman Catheter on my upper chest, which is still leaking blood slightly (which is normal).

The idea of moving with the muscles tensed, working against each other, is what was behind the old Charles Atlas "Dynamic Tension" exercise program, which was advertised in comic books when I was a kid in the 60's and 70's. Do any of you remember those comic book commercials where the bully kicks sand in the face of the 99-pound weakling? Then he takes the Charles Atlas program, comes back to the beach buffed out, and punches the bully? (The ad can be seen here.)

I figured it out from a little poking into the basis of the system when I was a teenager. I think I found an interview with Charles Atlas or something. It doesn't work near as good as weightlifting (except for beginners), but it does work.

The Radiation and Chemotherapy


The total body irradiation isn't affecting me right now, though I'm taking strong measures to prevent problems I've had in the past. The nurse and the doctor were quick to tell me today, though, that the chemo will hit me like a combination of both the radiation and the chemo. It will bring them together.

That's not my plan, though. My plan is to experience some fatigue from no blood, live off transfusions (gotten 30 units of blood or so in the last six months; thanks to all those who donated!), and to intensively hide from all germs for four weeks. Then I'm going to get better, throw up occasionally, and run a 5K in the summer, a half marathon in the fall, and a marathon in Sacramento in 2013.

Lord willing.