Guest Blog and Neat Links

Okay, some guest things.

Leilani and I fell asleep at the festival last weekend; it was about 40 degrees outside, and we were exhausted.

I found a blog by the mother of a 10-year-old leukemia patient. I've got to tell you how I found it, then I'll give you the link. Good blog.

A man named David Haas asked me about putting a guest post on my blog. I got it, and while it's a much different style than my writings, I thought I'd go ahead and let him do it. That will go up Monday morning.

In the process of seeing who he is, I went to his blog, which is also really good. In fact, it's better than his guest article, but that's because his guest article serves a different purpose than his blog. (I'll link his blog below, too, because I want to say something about it first as well.)

Anyway, one of the comments on his blog was from a lady who said her blog is called "THAT SUCKS."

Yeah, That Sucks!

As it turns out, that's what her 10-year-old son said when he was told that his leukemia had relapsed.

Funny now, isn't it? I mean, it's not funny that he has leukemia, but the comment is funny because the kid has a great attitude. There are some truly great people in this earth, and a lot of them are your next-door neighbors and co-workers. You cannot help but look at the pictures on his mom's blog and not feel better about life on earth in general. That's just how it is.

Back in the hospital when we were less freezing and less exhausted

By the way, they are taking donations for Tucker. My experience is that making donations like that makes me feel better than a good movie, so if a movie is worth $15 or more for you and your buddy to go, then helping a kid like that is worth more.

Ok, i just went and donated $15. This is my pitch to ask you to do the same. No, wait ... this is my pitch to get you to buy one of Tucker's tags, which are $13. He only keeps $10 that way, but maybe the tag will get someone else to give.

Some of you gave great donations for Jerry's dentist bill, and I got near to $500. The dentist also agreed to drop the price by about $1000, and they're doing a bake sale back home. Thank you for your help!

Also, this blog isn't about donations, and my friends know my focus is not money. But because my focus is not money, I know that giving feels great. I'm sorry so many charlatans, especially religious ones whom God will reap the rewards of their evil behavior, use donation requests to extort money for grandiose living, self-glorification, and shameless temples. Giving is supposed to feel great and be delightful. It ought to give us great joy to contribute to organizations like the Shriners, St. Jude's Children's Hospital, missionaries we trust, etc.

Ok, say back to David Haas' blog. My favorite recent post on his blog is called "Warrior Dash." I mean, how could it not be. He discusses a type of 5K race that you know I'd loved to have tried (a perfect Nathan and Abby type race), and he gives tribute to people with cancer who are going through treatments. Hey, that's me all the way through.

October 6-7: Qualifying for Transplant

Whew, what a day!

Today I had a chest x-ray, a bone density scan, an EKG, and echocardiogram, and a bone marrow biopsy. Each one had an associated waiting period and travel through a very large hospital.

Pulmonary (lung) function test

Oh, and I found out I may have prostate cancer.

What's funny is that if I had been told that my PSA (Prostate-Specific Antigen) had jumped from 4.0 to 13.3 a few months ago, I would have panicked ... at least a little. Today I thought, "Oh, really?" Prostate cancer is hardly something to worry about today.

It does seem like cancer comes in twos in our house.

As many of you know, I am part of a Christian community. I live in a very large double-wide mobile home with another family. We have an outbuilding in which a single mother and her daughter stay as well. In fact, my wife and I moved our bedroom to my parents' RV a few weeks before my leukemia diagnosis. (Since a couple weeks after the diagnosis, we've been living in Nashville.)

That single mom, Jenn, was diagnosed with melanoma (a malignant skin cancer) in March. They removed the melanoma and a couple lymph glands, but in May some mild seizures (only tremors at that point) led to a diagnosis of brain cancer (an astrocytoma). The doctors said the two cancers were unrelated.

Unrelated!

Jenn was only 37, but she handled the news with remarkable grace. She had as much of the brain tumor as possible removed, and then they radiated the microscopic tendrils that were left. She lost hair, lost balance, and had to go through physical therapy, all with a cheerful (and humorous) attitude and a smile. She began my training in how to take cancer news.

They can't really do anything else for her. I think we pray either that it goes away or that it stays stable for a few years until cancer researchers find a cure. Please join us praying for Jenn, too.

Anyway, she had two cancers, one found in March and one in May. It's possible I'm going to have two as well.

Prostate cancers, however, are incredibly misunderstood, at least by everyone I know. I found some information from the American Cancer Society that seems like awful big news to me, and I sure wish I'd been told about it.

But let's save that for a few paragraphs from here, and let's talk about the term myeloablative, and why it can be painful to be healthy.

Myeloablative or Non-myeloablative: Intense and Not So Intense

The paperwork I saw Tuesday said that I was scheduled for a "reduced intensity" transplant. Dr. Strickland had told me that might be the case. Apparently, the cutoff for a full intensity or reduced intensity preparation for the transplant is age 50. I am 50, so I'm in the "iffy" range.

... Okay, now it's the next day. I got interrupted, and I never came back to this blog. I read some of End of the Spear (I have a signed copy!!!) to my kids, which I highly recommend, and then we watched the movie, The Eagle, together.

So now I'm sitting in the waiting room of the "pulmonary/neurodiagnostics" section of the hospital trying to catch up. It's now October 7.

Anyway, Dr. Jagasian came in yesterday and explained what we all know, that all 50-year-olds are not the some. He said, "There are 50-year-olds who walk in looking great, and then there's another that comes in on oxygen in a wheelchair. Not the same."

Results from the pulmonary function test

Yeah.

Anyway, I look healthy enough to consider a fully ablative transplant, which I'll explain in a second, but first let me tell you why it matters.

Apparently, some leukemias stay in the blood, but others learn how to escape. The tumors on my back, clavicle, and lip prove that my leukemia knew how to escape the blood. Also, I had a couple swollen lymph nodes and a swollen spleen.

(And now I'm at home)

All these things mean he'd prefer to do a full intensity "conditioning regimen." This provides the best opportunity to get all the cancer cells no matter where they might be hiding out. As the nurse explained, with a full intensity conditioning regimen, the chemo and the radiation do all or almost all the cancer killing. With a reduced intensity regimen, the transplanted cells have to participate in killing the leukemia as well as replacing the entire blood system.

The full and reduced intensity regimens are called myeloablative and non-myeloablative. The terms have to do with whether they ablate, completely destroy, the bone marrow or whether they just partially ablate it. If they partially ablate it, the new stem cells have to outcompete what's left of my bone marrow besides the other things they have to do.

So Monday they're having a meeting. At the meeting, they'll go over the results from all my tests. After the meeting, Nurse works will email me to let me know whether the doctors opted for fully ablative or not.

I already told them I vote for going for it.

The difference is that one of the two chemotherapy drugs will be doubled, and I will receive six times the radiation. That will result in a significantly increased amount of nausea and pain, but it seems better than having the leukemia come back. At least to me. (Gosh, you know, I think there's a part of me that wants to prove how tough I am, too. Emotions may make life worth living, but they're stupid.)

Prostate Cancers

Like I said, it's now tomorrow compared to when I began this blog. Since I mentioned that I had big news from the American Cancer Society, I've gotten very similar news from the radiology oncology doctor I saw today and from Yahoo News.

Between tests, waiting

The radiology oncology doctor (i.e., he works on radiation in relation to cancer) said that the test for prostate cancer, called the PSA test, has proven to be possibly more trouble than it's worth. It's a great test for finding cancer, but 70% of the cancers that it finds shouldn't be treated, and the test can't tell you which is which!

So the question is, should doctors keep finding these cancers, then treating all of them, resulting in incontinence (i.e., you can't control when you urinate), infections, and even death, or should they wait until the cancer causes some other problem, which means that some cancers will kill the patient, though that could have been prevented with treatment.

Which is worse, the cancer or the treatment?

The reason that question can be asked is because so many prostate cancers are simply not a problem. They will slowly grow until the man dies of old age.

Just today, of all days, a government task force advised men not to be screened for prostate cancer!

The American Cancer Society, says the article, is holding their tongue on approving that decision, instead saying that men ought to decide for themselves. Nonetheless, they did say this (quoting from the article I just linked):

"We have been long concerned, and it has been apparent for some years, that some supporters of prostate cancer screening have overstated, exaggerated and in some cases misled men about the evidence supporting its effectiveness," said Dr. Otis Brawley of the American Cancer Society in a statement. "We need balanced, truthful information to be made widely available to physicians and patients when making important health decisions."

Okay, so statement #1 is that proponents of prostate cancer screening can't be trusted. Statement #2 comes from the article I mentioned yesterday, when I started this blog:

Because of an elevated PSA level, some men may be diagnosed with a prostate cancer that they would have never even known about at all. It would never have lead to their death or even caused any symptoms. But they may still be treated with either surgery or radiation, either because the doctor can't be sure how aggressive (fast growing and fast spreading) the cancer might be, or because the men are uncomfortable not having any treatment. Treatments like surgery and radiation can have side effects that may seriously affect a man's quality of life. These treatments can lead to urinary, bowel, and/or sexual problems. In some men these problems may be minimal and/or short-term, but for others these problems can be severe and long-lasting (or even permanent).

The article goes on to say:

Studies are being done to try to figure out if early detection tests for prostate cancer in large groups of men will lower the prostate cancer death rate. The most recent results from 2 large studies were conflicting, and didn't offer clear answers.

Now this article isn't saying that it's a bad idea to screen for prostate cancer. They're saying the results were "conflicting," but is this what you were told about prostate cancer screening? Or were you told, "If you're over 50, you definitely should get it done"?

Personally, I am always of the position that if the doctors aren't sure that messing with something will help, then they need to leave people alone. "You never know" is not a good enough reason to spend thousands of dollars, risk incontinence and infection, and lose who knows how much time to treatment and sleep to worry. It's just not, and I'm a little offended that this sort of news hasn't already been trumpeted.

On the other hand, my PSA went from 4 to 13, which is a huge jump, big enough to cause the radiology oncology doctor to raise his eyebrows. I guess there are some people who ought to be checked further.

October 6: Off to the Tests!

This is the first day of two days of tests at the hospital to determine whether I'm fit enough to handle a bone marrow transplant.

Yesterday I made web pages on bone marrow/stem cell transplants and Blastic Plasmacytoid Dendritic Cell Neoplasm just because I thought there might be enough people on the internet trying to find that information in the way and from the perspective I present it. I put those pages on my Christian history site because I wasn't sure where was a better page to host them.

If you've been keeping up with this blog, and I know a lot of you have, there is nothing new there. It just happens to be collected in one place.

Hmm. I guess I could have made them pages on this blog. I'm not used to thinking about a blog having pages that don't scroll by date.

Well, they're not here. They're there, and just as readable!

October 4: Literally Dizzy

So today I read completely through the warnings that they have to give me before my stem cell transplant. It was dizzying.

No, I mean it literally made me dizzy.

Somehow, I assume by the grace of God, I've been able to completely block out all negative thinking about leukemia, chemotherapy, and the stem cell transplant. Odds of dying haven't moved me (except that half hour or so after googling BPDCN), nor have I spent any time worrying about potential side effects.

That includes today, but apparently something inside me notices when I read page after page after page of "risk of nausea," "liver damage," "infections that could be fatal." When I looked up from what was probably 15 or 20 minutes of reading, it was like someone had slapped me upside the head. I was, quite literally, dizzy.

But that's not what seems weird to me. What seems weird is how I got the papers.

I went in today for a dental cleaning, which is required before the transplant. It's part of being up to date on the dental. Afterward I dropped into the stem cell transplant unit (SCT) for a tuberculosis test. The nurse practitioner in charge of my case wanted me to get that test started early because it takes a couple days to check it. Doing it today allows her to look at it Thursday and, hopefully, mark that off as negative.

So I dropped in and asked where to go and what to do. A lady at the check-in desk of the SCT unit told me she'd take care of me. She scheduled a nurse to give me the test, and she handed me a packet. "I don't know what's in there," she says, "but if there's anything to sign, don't sign it. They'll want you to sign it in front of them."

"I see. So I need to bring this back with me on Thursday?" I ask.

"Yes," she tells me.

So I sit down to wait for the test, and, naturally, I open the packet.

First page:

"You have been referred to Vanderbilt ... Your case was presented to the transplant committee on 7/11/11 by ..."

Boring. I turned to page two.

"Hickman catheter (central line): Complications of placement: blah, blah ... Infection: 30% chance of getting infected, not life-threatening ...
Preparative regimen and side effects: Chances of dying from regimen related toxicities are 20-30%"

Whoa! I have to say, that among the side effects of treatments I'm receiving, I'm really not used to reading "chances of dying ... are 20-30%."

I thought, "Is there no advance warning about the packet itself?" It could say;

WARNING: This packet contains brutally honest health information of which you have not yet been apprised. Complications associated with opening and reading this packet without professional assistance include nausea, vomiting, and heart trauma. ... Oh, and dizziness.

A Little Summing Up

To be honest, though, I kind of liked having the risks summed up in one place.

The chances of dying from the preparatory regimen is 20% to 30%. Afterward, once the transplant is done, the risk of Graph-versus-Host Disease (GVHD) is 75% to 80%. Of the many who face GVHD, 80% will find it treatable. The other 20% will die.

The risk of dying from any of the other issues are pretty slim. So doing a little math, they're saying that currently my risk of dying from the treatment (the chemo, radiation, and transplant) are between 32% and 41%.

That's better than what I've heard.

In fact, Dr. Strickland told one of my friends in the hospital that his chances of surviving the transplant were 40%. I was there when he told him. He didn't flinch or hesitate. My friend told Dr. Strickland to be honest, and he was. No thinking about it, just "40%."

My friend's got some heart problems, so that may make it worse for him. I don't know.

I just know that right now, assuming I'm reading that paper right, they're telling people they have a 59% to 68% chance of surviving the stem cell transplant and the chemo and radiation needed to prepare for it.

Dizzying Side Effects

I had to go get my test, so I waited until I got home to read the rest of the packet.

It is remarkably thorough. It is also clearly set up to be given in a consultation setting. Nurse Works told me that we would have a 90 minute or more briefing on Thursday. I suspect it's to go through the packet.

This is me getting ready for the previous picture

I also suspect it's easier to read the packet with a comforting medical professional guiding you through it.

I read it by myself anyway. Like I said, it's very thorough, and it goes through the irradiation process and each individual chemotherapy drug. It addresses GVHD, and it discusses the side effects of the immunosuppressive treatments for GVHD. It's 5 pages of potential problems, a truly "dizzying" list. These are just the ones listed as "common":

Oops, wait. Let me give you one that's a little frightening, but it's pretty cool. This whole process is amazing! They take stem cells from an umbilical cord and placenta and simply inject them in a vein in your arm. From there, nature takes over completely. Those stem cells see the serious lack of bone marrow and associated blood cells, so they plant themselves in your bones and go to work.

So the first potential side effect is frightening, but it's as astounding as the whole process is.

Your new immune system will have to learn to protect you from infections, much like that of a baby. Because you still have viruses and possibly other organisms in and on your body that you have picked up during your life, they may be able to become active again and make you ill.

They add, "Infections can become life threatening as a result of your body's decreased ability to control them."

Frightening, yes, but the whole idea is just amazing. (I think I said that already.) Here's one more interesting result of this amazing process: "You will need to repeat some of your childhood immunizations when your immune system has become capable of responding, probably a year or more after transplant."

A whole new immune system. Wow.

"Common" Side Effects

Okay, here's that list:

• Shortness of breath
• Weakness
• Fatigue
• Infections
• Thinning and loss of hair
• Infertility
• Loss of appetite
• Chills
• Fever
• Nerve pain in arms and legs
• Nausea
• Vomiting
• Stomach pain
• Sores in the mouth or stomach
• Loss of desire to eat
• Diarrhea
• Skin becomes dark
• Drowsiness
• Restlessness
• Dizziness
• Poor coordination
• Poor judgment
• Headache
• Tremors
• High blood pressure
• Excessive hair growth on the face and limbs
• Electrolyte imbalance
• Sinusitis
• High blood sugar
• Growth of too much body hair
• Kidney damage
• Skin rash
• Liver function abnormalities
• Dry eyes
• Dry mouth
• Dry, flaky skin
• Joint pain similar to arthritis
• Face appears fat and swollen
• Weak bones (osteoporosis)
• Insomnia
• Mood swings
• Increased appetite
• Muscle weakness
• Cataracts

Those are the ones listed under "Common"! They're separated out by the various treatments, and I avoided repeating nausea, vomiting, fever, weakness, high blood sugar, liver abnormalities and a couple others that are mentioned repeatedly.

Really, I'm not as worried as it might sound. In fact, I can't say I'm worried at all. On the other hand, I've always known there's two parts of our brain. There's the left-brained part that thinks logically, of which we're always conscious. However, because that sort of thinking is in our conscious, it can only handle so much information. Huge amounts of information, such as our general perception of life—and long lists like the one above—are processed in our more intuitive and less conscious right brain.

The intuitive part of our brain doesn't kick out words and sentences. It kicks out feelings, which is why we have those "gut feelings" and "hunches." It's also why those gut feelings and hunches are so often correct.

However, it's also why we are possessed by an eerie sort of fright when we're alone in a dimly lit house. That sort of feeling may have served us well as we crept through a thick jungle in twilight, but it's mostly useless in the average house in a civilized town or city.

It's that part of my brain that kicks out the dizzy feeling after reading through five pages of "common" side effects.

Right now, though, I feel just fine. Apparently the intuitive side of my brain has gotten settled with the idea that this is the route God has called me to. This is the way I'm supposed to go, so it will all work out good in the end. "Yeah, though I should walk through the valley of death" and all that.

A Little Advice

That combination of a logical, conscious side and an intuitive, feeling-oriented side is what makes us human. That's why it's silly to apologize for how you feel (or, if you're a Christian, to repent for something you merely felt). You have little control over how you feel.

Those feelings, though, are suggestions from your intuitive side about what to do. You're supposed to combine that with your more logical side and make a moral choice about what you're going to do.

On the other side, when your logical side is being checked by the feelings that rise up from your intuition, you should pay attention. Americans, and perhaps all westerners, are prone to ignoring their intuitive side. That's a route to unhappiness.

Just sayin'.

October 3: Surprises and Faith

I wandered back into Vanderbilt this morning for what I thought was a routine blood test. See how much everything is up, then wait around for all the tests on Thursday. Not so.

I can look at my blood counts as soon as the doctors can. They come up on a web site called My Health at Vanderbilt. I have my own account, and I can see the results of most of my tests except the major ones. I have to request a copy from my medical records for those. I got a copy of the the original pathology report that led to my diagnosis, which was very cool.

Today, though, just for a second, it was breathtaking. The first thing that comes up on the test is my white blood cell count. The part of the page with the counts looks like this:

Sorry for any blurriness. I can't even check it. Like a couple other web sites lately, Blogger has updated its look, so there's things that don't work. (Delicious and Facebook were the others.) I can't preview my post!

Picture I took walking one afternoon last week

Anyway, the point is, that 3.0 leaped right out at me. It was 6.8 last week. It's not supposed to be going down. It didn't need to go up, either, because 6.8 is smack dab in the middle of normal. 3.0 is not!!

The next thing I checked was neutrophils. That's a portion of the white blood cells, the ones that fight bacteria. My neutrophils were nearly 5,000, which is really good, but they couldn't be 5,000 today because that 3.0 means that I only had a 3,000 count of all my white blood cells put together. Since the neutrophils are a portion of that, they could be no higher than 3,000, and they could only be at 3,000 if I had no others.

So I checked. That "NT AUTOMATED ABS" near the bottom is the preliminary finding of the neutrophil level. That 0.94 means it's at 940, which is not real good.

Leukemia patients don't like to see their white blood cell counts be where they don't expect them to be.

Next I checked all the other counts. Platelets up. Red blood cells up.

Picture I took while walking one morning last week

Conclusion? This is weird.

When the nurse practitioner, Meg, walked in, she looked at me, checked the expression on my face and immediately asked, "Did you see your counts already?"

"Yeah."

She took a moment to figure out what to say, so I jumped in. "White blood cells down, and everything else up. I thought, 'That's weird.'"

Her turn to say "Yeah."

Then she told me that she checked with the Dr. Strickland about the counts, and it seemed impossible to both of them that I could have relapsed so soon after a chemo treatment. They just had to figure that maybe my neutrophil counts were still ramped up from the Neulasta shot last week and they're still setttling.

So we're leaving everything on schedule. One particular set of counts, called "differentials," hadn't come back yet. She said she'd call me if they had to change anything. "Change" would mean do the bone marrow biopsy on Thursday to make sure everything's okay but cancel all the other tests.

Hmm.

So now the differentials have come back, but that's a set of counts I can't read.

The Adventure

To me, this is an adventure. So some off kilter blood cell counts is just something more to watch God work through.

Next to the apartment complex office

I got some perspective on that this morning. I overheard a man telling what was probably his son that all his counts were down except his platelets. I got to talking to him, and they're treating him for a stage 4 cancer that has moved into his bone marrow. I don't know what the cancer is. Either way, the treatments aren't working, so they're still fishing around for an  answer. The current treatments increase his platelets, but not anything else. Then, after a couple days, the treatment wears off, and his platelets crash, too.

His white blood cell count was 1.3, less than half of what mine are today. His son was asking about why the dad wasn't being told to wear a mask. I explained neutrophils to them, which they'd never heard of. Chances are his neutrophil count must be a pretty high percentage of those 1300 worth of white blood cells.

He got called off before I could get much further talking with him. When he left, I bowed my head and prayed for him.

Speaking of Needs, Can You Help With ...

Jerry, who's been my partner through all this treatment. He's got Acute Myeloid Leukemia, and our treatments are similar. We've been on virtually the same time frame. He started his first chemo two days before mine, and his second chemo was one week after mine. They had to make two attempts to put him in remission the first time around, so he fell behind.

He's got enough dental problems that they don't want him to go through transplant with the teeth he has left. Too much chance of infection or abscess.

His insurance must think that's an okay treatment because they're paying for the room and the anesthesiologist, but for some reason they're refusing to pay for the extractions. So he's facing a $3600 bill while he's not working and on disability, barely getting by. I happen to know a friend of his is helping out with some needs he has, but I'd like to help him with this. They'll actually do the extraction as soon as he pays 30% down, which is $1080.

The doctor and the nurse practitioner are looking for financial help to pull that off for him as well. There are charities that help with things like that if we can find them. I'm hoping to contribute to that as well.

If you're willing to help me help, you can use this donate button. It's not tax-deductible because it's just going to my Paypal account, and I'm giving it to him. He's not a charitable organization, so it's not tax-deductible. On the other hand, I never collect any money at that PayPal account, so it can't get mixed up with any other funds. If it's in that PayPal account, I'm giving it to Jerry.

If you don't already trust me, you better not give anything. You have to put in the amount when you click the button. I haven't put any predetermined amount in there.

A Story (He Said, Changing the Subject with No Transition)

We went back to Rose Creek Village this weekend. It was great. This weekend was a festival we call the Ingathering, which corresponds to the Jewish Feast of Booths, though we really didn't mean for that to be so. Originally, it was a just a time to camp out together. It is still that, but like the Jewish festival, it's also a reminder of where we came from and the principles that make us who we are.

(Primarily there is one principle at the center of Rose Creek Village. Jesus said that it is the unity of his disciples that would testify to the world that he was really sent from God and that it is a notable, mutual love that would prove to those outside that we are his disciples.)

Some of the tents at the Ingathering

Anyway, a lot of friends join us for the Ingathering nowadays, and it's a really pleasant time, especially because we've been gone so much the last three months.

So Saturday night one of our dear friends, named Donna, came over and hugged my wife and me, saying, "I have to get a hug because I don't know how much longer you'll be around."

Now of course what she meant was, "I don't know when you're going back to Nashville, and I don't know how much I'll get to see you when you do." Still, because of how it sounded, I couldn't resist answering with, "Yeah, we could drop dead even before winter's out."

Donna's a really neat lady. She's only polite when it's appropriate to be. When politeness is just a nicety, she opts for being real. So she looked at me and said, "You jerk. You know that's not what I meant. What a jerk!"

She was laughing, though.

(As an extremely interesting aside, Donna knows something about death. She was choked to death once and put in a morgue. When she sat up on the slab after being there about 45 minutes, she scared the living daylights out of the morgue nurse. That sort of experience puts some zeal for life and trust for God in a person.)

Children dancing as we sing; it's a festival!

Any other Ingathering stories really belong on my other blog.

And I'll let you know what the doctor has to say about my differentials as soon as I know.