Thursday, August 28, 2014

If I Only Had a Brain

I just got back from my doctor's visit a couple of hours ago and the verdict is: Yes, I do have a brain. Other good news included that I do not have any detectable cancer in my brain and that the two largest tumors in my lungs have shrunk. The big one by about 35 cm³. and the next biggest one by 0.6 cm³. A couple of other small ones increased in size, but the overall total was a shrinkage of 33.1 cm³.  No significant changes to anything else. The doctor said to not expect this kind of progress as a regular thing, but it is very encouraging nonetheless. 
As a side note, the report gives tumor size in a 2 dimensional format, width by height. Since these things are 3 dimensional, I estimated their size by calculating the volume of a cylinder assuming one of the values was the diameter. Probably a bit inaccurate, but close enough for me.

I was also scheduled for a blood test. They did NOT tell me they also needed a urine sample. After a trip lasting 2.5 hours and being on a diuretic, I naturally hit the boys room as soon as I arrived. I consumed about 2 liters of water while there and was able to produce the required specimen before leaving. I'll try to hold it on my next visit.

Side effect-wise, I've started experiencing persistent mild headaches. No excruciating migraines, just enough to realize my head hurts if I pay attention. Also my tongue is sore all the time. Hot things are hotter, spicy things are spicier, cold things are much colder, and carbonated beverages feel like I'm drinking liquid fire. No hair loss or nausea yet. My wife also reports that my body odor has changed. Not offensive, just different.

While there I picked up a CD of all the MRI and CT scans they've done lately. I'm planning to look at them tomorrow morning. 

Next doctor's visit in 3 weeks with regular visits every 2 or 3 weeks for the next 2 months.

Finally, I've lost count of the number of people that have told me they liked my "Sin Cancer" post. Thanks to all of you, it's very encouraging.

Friday, August 22, 2014

Close Encounters of The Bird Kind

One of the many "poison pills" I take on a regular basis is Coumadin. It's generic name is Warfarin and if you take a look, you'll see it's an ingredient of many brands of rat poison. It works by making a rat's blood so thin that it bleeds to death. Kind of gruesome when you think about it, but in small doses it keeps my blood a bit thinner than normal so I don't have clots forming in my bloodstream. With something so potent, you have to keep a close watch on how thin your blood is getting or you'll end up like a rat and bleed to death from a little scratch. That's why I have a blood test done about once a month.

I had my regular appointment a few days ago and parked across the street from the clinic. Returning to the parking lot, I was suddenly accosted by a small bird. Not just once. I was dive-bombed by some sort of sparrow at least four times before I got to the safety of the car. My wife had been waiting on me and laughed as I got in. "Bird problems?" she asked. She said the bird had been attacking everyone that walked past it's tree. It was probably protecting it's nest, but I found it a bit hard to not take it personal. Birds don't like me.

I park my car next to my house, under a gigantic tree. I'm not sure what kind it is, maybe a maple, but it's been around for probably a century. No matter how often I wash the car, it is covered in bird poop within an hour of parking under the tree. It doesn't matter what the season is. Winter, spring, summer, fall are all the same to the birds. And I don't think that many birds nest in that tree. You don't see them much until you pull under the tree with a clean car. It's like a clarion call for anything with feathers to come empty it's bowels.

Speaking of cars, my wife was traumatized a few days ago when she tried to renew her driver's license and failed the vision test. She got an official state I.D. card instead. It's the first time since she was a teenager that she hasn't been legally permitted to drive. She hasn't actually driven a car in about six or seven years and the last time she went in to renew they forgot the eye test. Otherwise she probably would have lost it then. Still, it was upsetting for her, another reminder that she can barely see anything. She hasn't read a book in about ten years...and she's a former reading teacher. Kind of ironic when you think about it.

On other health related issues, I had a MRI scan of my head done yesterday. When renal cancer metastasizes, it tends to go to the lungs, bones, liver, and brain. Everything else has been scanned at least once, it was time to check my head. I'm meeting with my oncologist this coming Thursday to see if they found a brain.

Tuesday, August 19, 2014

Relative Values

My two-year old grandson is still learning to talk. Although we are still scratching our heads about some of the things he tries to say, his vocabulary is growing daily. One thing he clearly shouts as he plays around the house is “Iron Man…Pow!” while rigidly holding one of his arms out, releasing an imaginary repulsor ray. 

Marvel Comics has been on a roll lately with non-stop big budget films of their super-hero characters. The Avengers…Captain America, Hulk, Thor, Iron Man, and a few other lesser known costumed crusaders, regularly race across the screen defeating evil villains, invading aliens and other baddies. Opening week box office receipts are in the hundred-million dollar range, and overall gross is in the billions. I’m pretty sure that, if you add in the merchandising, the final figure would probably double or triple.

As I was growing up I was a rabid fan of comic books. While DC Comics was my favorite publisher, I did read an occasional Marvel as well. Iron Man was a particular favorite of mine. I vaguely recall holding Tales of Suspense #39, hot off the press, in my teen-aged hands. Had I known that a mint copy of the rag would someday sell for $375,000.00, I probably would have taken better care of it. I don’t know what ever happened to it, I suspect it was sold for much less than cover price in one of mom’s annual garage sales.

Where am I going with this? I guess I’m just amazed at how much people sometimes pay for things. For example, Rolex watches (depending on the model) routinely sell for thousands, or even hundreds of thousands. There are a few people that would wear nothing less. Me, I’m satisfied with a ten dollar digital from Walmart. Sure, the Rolex looks a lot more impressive, but the Walmart special tells time just as well. I guess looks don’t impress me much. In fact, I have a bit of disdain for that kind of ostentation.

I recently started taking some medicine that retails for over ten thousand dollars a bottle. Thankfully my insurance covers about 99% of the cost, but I can’t help being a bit disturbed by the fact that I gulp down about $340 worth of pills every morning. Is it worth it? It’s supposed to be keeping me alive, so the answer is yes. Would I pay $10,200.00 a month for it? If I had the money, the answer would still be yes. As it is, I can barely afford the $100 a month it costs me. Would I pay $375,000.00 for a comic book? Nope. I had a bit of trouble getting mom to pay 12 cents for it originally.

What do you value?

Friday, August 15, 2014

Thank You!

I received donations to go towards my medical expenses from two very generous sources this week. I want to say thank you to those involved, both donations were from groups of people I associate with. One was from several folks in an online forum, the other group is composed of many IRL friends. There is no way I can express the magnitude of my appreciation. Please know that the money will be well spent.

I broke a crown off of one of my molars last week and went to the dentist yesterday to have it repaired. No such luck, it's beyond repair and I'll need to go to an oral surgeon to get the remains extracted. Bummer.

No other major developments to speak of. I bump up the dosage on my cancer medication tomorrow morning to full strength and (knock, knock) no major side effects so far. No stray follicles in the hair brush yet. I did have a couple of low level headaches, not sure if that was due to the medication or not. I also had to stop the stool softener I had been taking....

Nothing else happening until next Thursday when I get more CT and MRI scans to establish a benchmark on the cancer's growth or lack thereof.

Thursday, August 14, 2014

Dealing With The Government Online

Last year I considered applying for Social Security Disability benefits. I looked it up on the official government website and was dismayed by the mountain of paperwork needed to make the application and put it off until later.  It's later.

I'm already receiving SS regular benefits and the signup at the local field office took about fifteen minutes. I figured I could gather the paperwork together and do the same thing with disability. It took several days of digging through my records to find every doctor, their address, their phone number, every hospital visit, every diagnosed illness, every medicine, last day I held a job, tax records, insurance records, et cetera. Once I had what I felt was just about everything I drove down to the field office and took a number. And waited. And waited.

Once my number was called I went to the window. Two minutes later I was back in my car headed home. To apply in their office I need an appointment...which takes two weeks. Once I get an appointment I bring my information back in...the clerk guaranteed that I wouldn't have everything...I find out what else I need and make another appointment which would take another two weeks. He strongly urged me to apply online instead.

Fine. I'll try it online. The website seemed fairly easy to navigate and I was encouraged. This should be a piece of cake.

Q1: Full name.
A: Well that's easy. I typed in my name.

Q2: Social Security Number.
A: Another easy one.

Q3: Birth date.
A: I hope everything is this easy.

Q4: Gender.
A: Male, of course.

Q5: Are you blind?
A: Nope. Simple as pie.

Q6: Are you unable to work?
A: Yeah, I sure am.

Q7: When did you become unable to work?

Okay, it's starting to get a little harder. My first thought was...two and a half years ago when my employer fired me for not being able to help unload delivery trucks. I looked up the date and plugged it in.

Q8: Have you previously been denied Social Security benefits?
A: Nope.

Q9: Have you been diagnosed with a condition that is expected to lead to death?

Hmm. Well this cancer is eventually going to kill me if my ticker doesn't fail or I get hit by a bus first. But that isn't going to happen for a while...I hope. Let's say no.


We're sorry...we cannot process your request. 
We are sorry for the inconvenience, but we cannot process your benefit application online because some information we have on file is different than the information you provided.


I looked back over the questions.
Name. Couldn't be that.
SSN. Same deal.
Birthday. Mom and dad wouldn't have lied to me.
Gender. Let me check. Yeah...definitely male.
Blind. I'm reading the screen with my own two eyes.
Unable to work. Yeah, I'm sure, I have a dozen reasons on that one.
When did you become unable to work? Okay, that's gotta be it. 

I thought about that one for a moment and remembered I had received unemployment benefits for a while after I was fired. To get unemployment you have to state you are able to work and some of the funding is federal...they probably have a record of that. Bump the date up to January first of this year, long after the unemployment ran out.

Denied benefits? I'm sure about that one also.
Condition leading to I don't think so. Not immediately anyway.

Go back to the form and plug in the change.

We're sorry...

Same message.  Okay, go back and say "Yes, I'm gonna die."

We're sorry...

Looks like I'm gonna have to call for an appointment.

UPDATE: Made an appointment the next morning. Two weeks? Nope...FIVE.

Saturday, August 09, 2014

Sin Cancer

The following is an article I wrote for the weekly church bulletin I edit.
Most of my friends know by now that I’m in a battle with renal/lung cancer. The strange thing is, I don’t feel any different. I suppose that if I woke up feeling like I do now twenty years ago, I might have noticed the change. But it gradually slipped up on me. Inch by inch, the cancer has taken over my body, but I feel fine. There’s an old cliché about putting a frog in a pot of water and starting a fire under it. The water gradually gets warmer and warmer, but the frog doesn’t notice until it’s too late and the water is boiling. That’s how this cancer was with me. I didn’t notice it until it just showed up on a CT scan one day. If it hadn’t been for the CT scan, I still wouldn’t know.

Sometimes we tend to be somewhat oblivious to what is going on. We get focused on unimportant things and fail to pay attention to what really matters. Others may notice changes, but often they don’t warn you about it. That actually happened in my case. A CT scan two years ago showed a mass on my kidney that was mentioned in passing on a report by the radiologist who interpreted the scan. The doctor that ordered the scan was more interested in my burst appendix and failed to notice (or at least failed to mention) the problem with my kidney. It wasn’t until a second scan was done a couple of months ago, and I was accidentally sent the report, that I found out about it. The mass had doubled in size. It now had a solid hold on my right kidney and has moved into both of my lungs as well.

Yet, like I said, I feel fine. Sure, I have aches and pains. I can’t stand up for more than a few minutes without my back feeling like someone is poking a knife in it. I can’t walk more than 100 feet without stopping to catch my breath. But that’s just part of getting old, isn’t it? That’s what I told myself anyway. There’s nothing wrong with me. But there was.

That’s the way sin works too. Sin Cancer. It’s a gradual process. Little by little, it creeps into your life and you don’t even realize it. Or, if you do notice it, you don’t worry about it. You tell yourself that it’s not that big of a deal. Given time, it gains a solid hold that can be impossible to break on your own.

I’ve just started taking pills called “Votrient” that will hopefully stop the growth of my renal cancer, but not without a cost. I can look forward to some nasty side effects. I don’t know yet how my body will react, but none of the side effects are pleasant. The doctors say my form of cancer can’t be cured, but maybe someday they will figure it out. The best they can do is put it in remission. At the moment, it sounds like I’ll be taking poison pills of one type or another for the rest of my life…and they’re not cheap.

The cure for sin cancer is available today. It’s free and has been available for two thousand years. It’s called “Jesus.” He sacrificed his life as atonement for the sins of the human race. To atone means to reconcile or repay; it is to set things right. Jesus made reconciliation between God and mankind for all time. Like I said, it’s free. All you have to do is accept it. Believe that Jesus was the Son of God and accept his sacrifice for your sin. Acknowledge your belief by confessing it and being baptized to remove sin from your life. That’s pretty simple. Side effects? Yeah, there are a few, not the least of which is eternal life.  Take the cure for sin cancer today before it’s too late.

Friday, August 08, 2014

Hair Today...

Well, I got my cancer medicine this afternoon and will be starting on it tomorrow morning. While the medicine is supposed to halt the growth of the cancer, it also has some devastating effects on the rest of your body as well. Reading through the warnings on the information sheet is pretty frightening. 

One of the possible side effects of this, and most cancer drugs, is hair loss. I have hair today, I’m not so sure about tomorrow. If it does happen, I’m wondering if it happens really fast, coming out in clumps, or just a gradual thinning. I guess I’ll find out. I’ll let you know.

The hair loss thing isn’t the worst side effect by far, but for some reason it’s the one that intrigues me. Most of the other side effects I’ve experienced at various times in my life; nausea, vomiting, mouth sores, rashes, and so forth. I’ve never been bald, so I suppose that’s why. Yeah, I’m getting a little thin in the back, I know, but I’m not bald yet.

I wore my hair pretty short up until my teenage years. I rebelled and let my hair grow out a little more then. Not really long, but long enough to need a comb occasionally. After high school I grew a moustache and let my hair get long enough to perm into an afro style for a while. I grew a full wooly beard for a little while but it itched and made me look a lot older, so I shaved it off.  Recently I let the beard grow back but have been keeping it trimmed fairly short…but I’ve let the rest of my hair go for almost a year now. It’s getting rather long. Not on my shoulders yet, but it’s longer than I’ve ever let it get. 

I’ve never been one to be fussy about my hair, I often forget to comb it and I look like Einstein on a bad hair day. But now that I face the prospect of losing it all, it bothers me a little. What will look like when I’m bald? Should I just go ahead and shave it all off now? Nah, not yet anyway. I’m going to just wait and see what happens next.

Monday, August 04, 2014

Red Pill or Blue Pill?

"You take the blue pill, the story ends. You wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in wonderland, and I show you how deep the rabbit hole goes."
My first visit to the oncologist is over and I've heard about all of the red pill stuff on the road ahead of me. I returned home with lots of new information to process and think about, I'm not sure where to begin talking about it all.

I guess the most depressing information is that the cancer I have can't be cured. Chemotherapy doesn't work on it. Promising new drugs are in the pipeline, but nothing gets rid of it at this point in time. That said, they can push it into remission in most cases.

There are six different oral drugs available that work against it, each of them runs around $14K per month, but my health insurance should knock that down to somewhere around $100 a month. That's what I'm hoping for anyway, otherwise my budget is going to be pretty hard hit. If it's more than that, I'm going to have to find some way of adding some extra income.

They plan to start me out on the drug that has the mildest side effects but I can still look forward to hair loss, diarrhea, nausea, or various other highly annoying things. A few folks get away with no side effects, but most have at least a couple. All of the drugs also mess with the effects of the heart medications I'm currently on, so I need to see my cardiologist for some adjustments there. I expect to be starting on the cancer drugs in about a week. There are also a couple of clinical trial drugs that show some promise, but I probably won't qualify due to all of my other health problems.

I'm returning in a couple of weeks for another set of CT and MRI scans to see how much the cancer has grown and establish a benchmark to gauge how well the drugs work. I'll be visiting this out-of-town doctor every two weeks for two or three months or until they get me stabilized, then I'll be transferred to a local doctor for continuing care.

Once I got back to town, I called my dad to update him on my situation, and found out that bad stuff is hitting everyone else in the family.  His health insurance has been provided as a part of his retirement package for about 20 years but is being terminated at the end of this year. Because of that, he's having to move out of his current one bedroom apartment into a smaller one room suite so he can continue to pay his medical bills.  On top of that, my sister's employer has announced they are shutting down operations in about 10 months and she'll be out of a job.

That's the red pill.

I think I'd rather take a blue pill...

Friday, August 01, 2014

Happy News

Actually, at least one thing DID get better today. My wife has been having some severe gastric problems lately that stem from stomach bypass surgery she had a couple of years ago. She had a perforated ulcer about 6 months ago and we almost lost her. An endoscopy about 6 weeks ago showed she still had a serious ulcer.  She had a followup endoscopy this afternoon and (Hallelujah!) the ulcer is gone! The doctor had planned to re-do her gastric bypass if it hadn't improved, so we've beat that one for now.

I'm still scheduled to see the oncologist in about 3 days to discuss chemotherapy for my lung cancer, so don't abandon the prayer ship just yet.

On an unrelated note, I noticed a digital sign on our way back from the hospital that announced the current temperature was +266° F.  Strange, it didn't seem to be that hot.