Don's Hair

Melody has offered to cut my hair.  I've tried to get her to cut my hair for 30 years with no luck. Now she wants to cut my hair.  I'm scared!!!  So what should we do with my hair?  Here's a few photos of my beautiful locks!

I like it just the way it is.


On to the less important (after the hair), I just finished another 5 day round of chemo.  It was 400 mg a day.  So we've increased the dosage from 100 mg, to 300 mg and now 400 mg.  What's next?  I spent 3 days in the hospital a few weeks ago.  That was a bummer and no fun.  I had a 102/103 temperature that with my cancer history that wouldn't let me go home with a few antibiotics.  They had to pump it there at 2400 mg of Vancomycin in an IV. I got that three times as well as a handful of other antibiotics. In the end, they determined that it wasn't pneumonia or septic or anything really bad so they sent me home.

I'm doing good mentally and ok physically.  Melody says I've got my sense of humor back. I'm not sure if this is a good or bad thing :-) :-)  Physically, I still have poor endurance.  I've been able to walk a mile occasionally, but I'd be happy if I could walk two to three miles a day. I'm not there yet.

This is for you Sheri Futch. I drink lots of water every day and I pee a lot. My constipation is well under control.  Thanks for your interest :-)

Thanksgiving was wonderful!  We had 30+ people at grandma's house.  It was really fun.

I read aloud page 112 of 531 of the Book of Mormon today.  Nephi writes about the last days how we shall "commence his work among all nations, kindreds, tongues, and people, to bring about the restoration of his people upon the earth".

Chemotherapy Plan

The first pass of chemotherapy medication was 150 MG of Temozolomide every day for 42 days concurrent with the 30 days (week ends off) of radiation therapy.  That ended about three weeks ago. The MRI was as expected with no cancer visible outside the original tumor that was removed.  An MRI does not have the resolution to see the spreading cancer until it grows larger and more dense.

The new 4 week regimen will be 5 days of 300 MG of Temozolomide followed by 23 days of no medication.   An MRI is scheduled every eight weeks.

I've been taking 4 MG a day of the steroid Dexamethasone since the beginning of treatment.  The steroid was to prevent brain swelling.  The MRI showed no evidence of any swelling in the brain, so I'm now off the steroid!!!. I can't imagine why anybody would take this steroid by choice.  You don't sleep.  Your bones are soft so if you tweak a knee, it doesn't heal. Bruises and cuts don't heal. They give you energy, but it's not real in that your muscles get weaker and weaker.  If you work out too hard, you get injured. At least that's my experience.

So, my body is a mess right now. I'm unable to do more than a few hours a day of anything physical. So, I pick and choose what I use my limited energy for.  I'm hoping to remedy this now that I'm off the steroids.

My mind seems to be working fine though.  I seem to have recovered a good portion of my short term memory that I was missing after the radiation ended.  My spelling seems fine again.  I still have lost words, but that's from removing the tumor.  One odd thing occurs as my brain remakes connections is that random and often annoying songs (like old Beatles tunes I'd rather forget) get stuck in my head and won't go away.

I guess that's enough info for today.

I read aloud page 74 of 531 of the Book of Mormon today.  Jacob teaches us about the judgement, the resurrection and the atonement of Christ.  If we will "hearken unto his voice" we are saved because of the atonement.

Constipation

Chemotherapy causes bad constipation.  I have the answer.  Most of the information on the web is not helpful. Ideas like eat lots of fruit and fiber.  Sure, good ideas, but I have the answer.  It's cheap and it's simple.

Wheat Bran.

That's it.  It's cheap, you can buy it in bulk.  A small spoonful on your cereal or on toast a few times a day completely solves the problem for me.  No more prunes or prune juice.  I still eat fruit and other fiber, but because it's healthy, not for constipation.

I want to thank those who encouraged me to post this instead of health status info.  You know who you are :-) :-)

I read aloud page 70 of 531 of the Book of Mormon today.  What are the odds that my last post quoted Isaiah and this post does too? Nephi asked Jacob to teach the people wisdom from Isaiah from the brass plates.  See 2 Nephi 8 verse 3 last phrase is "thanksgiving and the voice of melody".

Three Weeks. Two Months. One Year.

We're done with Radiation!!!

Three Weeks.  We get about three weeks off of Chemo too.  First of many MRIs is scheduled followed by an evaluation.

Two Months. The radiation doctor says damage will continue for a while even though the treatments are finished.  It's about two months to see what recovers.  This might be a TMI (Too Much Information), but the obvious physical effects are 1) the hair loss over the left ear, 2) the eyes feel like they're sunburned, and 3) inside my nose is gross.  The hair loss was expected and it'll come back or it won't. It's pretty much dead to the touch right now.  I saw the beam cross my eyes several times during each treatment.  I think this will come back.   I felt and smelled a zap to my nose every treatment.  There are no bad sores or pain. Let's just stick with "gross". I think this will heal too.  The other effects are harder to guess what improvement will occur in the next two months.  I sometimes have a hard time coming up with the right words and my "speeling" is poor.  We talked with the doctor about loss of short term memory as a common effect of the treatment.  This is a big one. I've been using my brain solving hard problems and learning new complex things, so some of the time I still got it.

One Year.  Chemo will restart after the evaluation for a year.

I read aloud page 47 of 531 of the Book of Mormon today.  Nephi includes wisdom from Isaiah from the brass plates in his record.

6 More

We're almost done with the radiation treatment.  This week and next Monday!

I want to thank my hero, my sweet wife Melody, for all her efforts.  We drive into and out of town for several hours Monday to Friday for the treatments (24 so far).  I appreciate that she takes care of all the hard stuff like dealing with the disability company (it seems like hours and hours of her day are spent getting them to do their job) and keeping me up with all my medications (yet another battle fought to get the medication delivered, again lots of time and effort on her part).

The doctor says that some people have the "fog/fatigue" lift a little within a few days after finishing radiation. That's my plan :-)

Even as it is now, if there's something I really want to do (like the going away event for Melody's brother and family who left Tucson) I can be sure I rest much of the day and I'm fine.

For those keeping up, I read aloud page 39 of 531 of the Book of Mormon today!  I'm not sure if I'm ahead or behind schedule. Nephi's brothers gave him a hard time about building the ship and he's trying to help them understand things.

Don's 531 Day Plan to read the Book of Mormon aloud

A number of people asked about coordinating with my 531 day read aloud plan for the Book of Mormon.  I don't remember exactly when I started, but here's what I'm going with.

17 Aug 2014 is hereby declared as Day 1!  Page one starts with "I NEPHI, having been born of goodly parents, therefore I was taught somewhat in all the learning of my father;" I complete any partial verse, so that day ended with verse 5 on page 2: "with all his heart, in behalf of his people".

Today is 9 Sept 2014, so I should have finished page 24 which starts with "And it came to pass that the angel spake unto me saying: Look! And I looked and beheld many nations and kingdoms."

Alas, I had to read a few :-) extra to catch up, but as of today, I finished page 24, finishing with the top of page 25 "upon the waters, and upon the land also, to battle against them."

Maybe somebody can help me with the date.  What day will be day 531?  That's when I will finally read Moroni 10:34 "And now I bid unto all, farewell. I soon go to the rest in the paradise of God, until my spirit and body shall again reunite and I am brought forth triumphant through the air to meet you before the pleasing bar of the great Jehovah, the Eternal Judge of both quick and dead. Amen."

Chemo and Steroids

Melody has been learning about the steroids I'm taking with the Chemo pills.  The steroids main purpose seems to be to prevent and reduce swelling in the brain. First some good news. Since 2010, the Chemo pills have gained much improved access to the brain (something about a blood/brain barrier), improving and lengthening life another six months or so on average.  I'll take it!

The information she read says that the steroids destroy the muscles and that many are now in wheel chairs and walkers because they didn't exercise enough when they could.  So, I'm bumping my exercise period from 2 hours (6 to 8 am) to 3 hours.  Today I walked/ran 2 miles for the first time in a long time.  I typically spend my morning repairing things around the house, doing dishes, laundry, cleaning floors, yard work. What ever works to get my heart rate up and use my muscles.  Next I walk. Last  I do a variety of exercises and stretches followed by some light weight lifting on my arms. I still have another two weeks of PT on the left shoulder, so they don't want me to get those muscles sore.

Photon Torpedoes to the head

I hope you enjoy Labor Day 2014.  I'm having a good day!

Thirty radiation treatments five days a week for six weeks.  I call them Photon Torpedoes as they are a form of high energy light.  I've completed 10 treatments so far. The primary purpose seems to be to slow down the spread of the cancerous glial cells (called Glioma) throughout the rest of my brain. The primary purpose of the Chemotherapy seems to be to kill fast growing Glioma in my brain as they spread.  This treatment is three pills a day for six weeks. I take them at night before bed. Small fingers of Glioma were observed in the microscope during the surgery heading out from the removed tumor. They may already be small bits of Glioma in the rest of my brain.  None is currently visible on an MRI.  The doctors say there is probably not any cancer in any other part of my body except my brain.

I then get a break from treatment for two to four weeks while they assess the effectiveness.  If nothing unusual, the standard protocol is I get to take three chemo pills every night for the next 12 months.

Oh, my sleeping is much better now. I get asked about this frequently as I went months without proper sleep.  We moved the evening steroid to noon and it helped greatly.

Here are some details about the radiation machine and the treatment.  My head is strapped down to the table with a mask over my face.  The machine then uses x-rays to align the table to 1 millimeter of the MRI image for precise aim.  Once it starts sending out rays, it follows a designed pattern to focus on the 2 cm around the removed tumor and to minimize the damage to the rest of the brain and head tissue (eyes, teeth, skin, hair, etc.).

Remedial Training on how to talk to Don

I don't know how to talk to people dying of cancer.

I have some ideas for how you can talk to me when we have the chance.

First, look at my face and eyes!  Am I happy to see you? Am I smiling? No need to ask me how I'm doing. You can see it in my face.  That's why I'm writing this blog, so you'll know how I'm doing.

I am not interested in discussing your cancer, your friends cancer, your third cousins cancer and how they were diagnosed as terminal and living well for 30 years.  I'm also not interested in discussing my cancer either.

I like to think we're talking because we know and like each other.  Tell me something fun. Especially if you are a kid or have a kid I taught in primary, Sunday school, cub scouts, boy scouts, or went on trek with, etc.  Tell me crazy things you or they have done.  I'll do my best to be the "Don" you know by saying my typical fun, dumb things to get a laugh.

I like to talk about problems that need solving.  I get great enjoyment thinking through, designing, and making things that solve some small or big problem.

I like to talk about software in general and software team leadership in particular.  If you have that interest, schedule some time with me and let's have some fun.

I love to play board games with friends.  You can always talk to me about the next time we'll have a chance to play a game.

Zombie Brain Surgery

Our brain surgeon is awesome.  He has more computer screens than most software engineers.  Four large vertical screens.  He went through in detail exactly what was in my brain and why he recommended a removal of nearly all the tumor as possible as quickly as possible.  We went for for it. This discussion was Thursday 31 July with the surgery scheduled for Monday the 4 Aug. (I need to check these dates)  The surgeon described all the microscopes, alignment of the latest MRI with software so he could probe real time and know exactly where in the brain he was.  "When in doubt, don't cut it out" is a standard mantra for brain surgery. I have a wild theory that maybe, just maybe instead of using all the fancy high tech equipment, he simply let a tumor eating zombie in to eat the bad stuff :-) Regardless, the surgery was very successful with 95% removed.  That's about the best they can expect.  There was no pain in recovery.  There was some discomfort from the staples that held the bone/skin/remaining hair back onto the head, from the jaw by the left ear, from the blocked left ear, and a sore throat.

They did another MRI, which I slept though. I think this is to get alignment for the Radiation Therapy scheduled to start soon after.

Then it was on to recover in their ICU.  After a day of me in the ICU, the head doctor said I was doing too well to stay, so they kicked me out into the next level down (where they wake you up every two hours instead of every hour).  Less than 48 hours after surgery started, I was on my way out of the hospital in time to get to the airport for Erin's return from her mission in Oregon.  I had to wear a funny hat so the sun stayed off the stitches and I got wheeled around in a chair.  Seeing Erin was so much fun and the crowd of friends supporting her return was awesome!

Seizure Setbacks

The seizure set me back physically more than any thing else.  In particular the dislocated left shoulder set me to idleness and I became weak.  During this time the doctors had no good reason why I should have a seizure.  They scheduled an MRI with contrast for a few weeks in the future.  When the results came in on a Thursday, the Brain Surgery was scheduled on the following Monday (two days before Erin was set to get back from her mission).  Certainly, the mass in the brain caused the seizure.

I had a few problems during this period reading some words.  It was rare, but odd.  I found that in each case after I re-learned the work (examples were eyebrow and piece) it was back for good.

Once I started physical therapy on the shoulder and starting walking a mile a day, the fatigue very slowly got better.  Going into the Brain Surgery, I was still very very tired from the seizure.

The What and the Why

I find myself going completely out of character and creating a blog!  The main reason is all the love and support I have received during my illness and a desire to share thoughts with all of you wonderful people. I recognize I am unable to give personal attention to all the people that care about my well being.  This effort will be to provide answers to all those questions everybody asks me that I would LOVE to talk about with each of you.  Unfortunately, it wears me out :-( and exhausts me.

I'm completely new to this. I hope you will help each other get connected to this blog in a way that doesn't involve me :-)  Everybody is welcome.

The back story for those who don't know it.

Friday June 20 2014

The Seizure

I don't remember it.  People tell me I was at work that Friday morning.  I can recall the conversations they tell me about.  From around noon Friday until I woke up around 7 Saturday morning, I have no memory.  We'd had an epic game day planned to play a game called Twilight Imperium III starting around 9:00.  I always get burgers the night before to feed the crew lunch.  I didn't know what day it was.  I sent out a few texts, and they managed to solve the food problem, arrive, set the game up, and start,  I didn't feel well at all and after playing for 10 minutes, fell asleep on the couch.

Melody's brother Randy rescued me and brought me to TMC where I was very very quickly admitted to the hospital.  Apparently, memory loss is a good trick to get through triage.

7-8 days later my kidney and liver recovered sufficiently to go home.

Okay, this is a start.  I'm going to send this out and update more later.