A Leukemia scare and a lot of pain

Since last I posted to this blog.  I have been in a lot of pain.  My back is still messed up royally.  Luckily I don’t have to wait til August 17th anymore, I am seeing the pain doc this morning (not why I was up at 4:30am, that was cuz of pain, not to get ready to see the doc).  The nerve damage in my neck/shoulder area is really working me over.  At times a pain level of 7 or 8.  It also messes with my right arm and causes my right hand to tingle.  Really annoying.  The rest of my back is doing ok on Flexeril, but my regular doc only gave me like 10 days of the stuff and my original appointment was a month away.  Oy.  Anyhow, I get to see pain doc today.  Hope to get some relief from that.

Seems I am not getting enough sun (surprise).  Furthermore, for some reason my hemoglobin, white blood cells, and platelets all decided to do a downer.  Combine the two and ta da you have a pale guy.  This prompted my cancer doc to order a bone marrow biopsy.  This one didn’t hurt like the last few.  Nice tall doc had leverage to get in and get it done without all the moving around.  It was achy for a few days, but its better now.   The results of the biopsy said my blood contains 4% blasts.  Blasts are the bad white blood cells that come with being leukemic.  According to my cancer doc’s nurse 4% is normal for a leukemia patient so I dodged a real bullet this time.   I wonder what the %age is that prompts concern?  And if this means that I will have problems in the future?

I put my D&D games on hold during this leukemia business.  I couldn’t think of anything else.  But we are set to resume August 2nd and August 4th respectively.  Gives me time to think and be prepared.  Even though it was only a week we missed, it seemed like longer.  I really enjoy running these games.  I know I have mentioned that many times before, but it’s true.

Teresa had decided that if I did end up back in the hospital she was gonna buy me a new gaming laptop.  I found what I wanted for 1299 at http://www.ibuypower.com a really nice Asus Rogue 15″ laptop, 17″ laptops are just too unwieldy.  Well, I guess that I won’t be getting a new laptop any time soon.

I am thinking of cancelling my vacation plans for next year.  Get the money I have invested back.  Leukemia is a real concern and I really don’t know if next year I will be able to go.  I have other things I could use that money for (see aforementioned gaming laptop).   And I wouldn’t have to worry about if I get sick between now and then.  I know it’s a once in a lifetime chance for me to go on this trip, but what fun would it be if I got all excited and ready and then life smacks me upside the head again and says No, you can’t go.  I hate planning my life around potential health issues, but this one is seriously a when and not an if.  I need to talk to my cancer doc, I need to talk to my mom.  Cancer doc to see if he thinks there is any chance of problems within the next year (hmmm, he just did a bone marrow biopsy, so I think his answer would be yes).  Mom because this is her once in a lifetime chance to do the cruise too and I would be squishing it for her as well.

Teresa is in New York again for work.  She went even before we got the good news about the biopsy results.   Her work told her if they came back bad they would fly her back immediately.  I thought that was cool of them.  Mediacom has treated us good over the years.  I know why Teresa is against the idea of starting over anywhere else.  Facebook offered her a lot more money to come work for them in Altoona.  She politely said “No”.

The little office area we set up for me in the bedroom is working out great.   Plenty of storage for all my stuff and all the electronic stuff (computer, printer, etc…) is now up off the floor.  Which is a good thing.  Even old(er) computer stuff is being put to use or will be rather.  Gonna set up an apache server (http/web) and mumble server on an old(er) pc which had a problem running dual monitors.  Well, since I only need it to run 1 monitor, it’s all good.

Been playing Skyrim a lot again.  I really love the game.  I think it’s the best PC RPG to come out in a long time and I don’t think any have come out since.  Yeah, the graphics are kind of outdated, but its a 6 year old game.  I tell ya, it still holds it’s own.  I picked it up cheap last Christmas and I have probably 2000+ hours logged into it.  I am a Skyrim junky.  I am currently playing the highest level character I have played and still having fun with him.  I normally have the attention span of a gnat when it comes to games like this, but I think I found the guy I want to play to the end so to speak.  A dual wielding lizard with dragonscale armor and dragonbone swords.  He started as a thief, but has evolved into so much more.


The dark dots are Blasts in a leukemia patients blood.  Blasts are immature white blood cells which are released in the blood stream.   It takes 20%(or more)  blasts to be considered having leukemia, I was at 4%.  So, for now, I am good.

The waiting is the hardest part

OK, I had been in remission from Leukemia for 2 years.  Life had been going great.  Things had all been falling into place.  I have been happy.

Then a few days ago, I went to my regular doctor and asked for some flexeril to hold me over until I get to see the pain doc.  No problem there.  She just comments that I am looking a little pale and asks to do another blood test (after having one 3 weeks earlier).  I was all “sure, whatever”.

Turns out that all my blood numbers are down.  Hemoglobin, WBC and Platelets were way down.  This prompted my regular doctor to contact my cancer doctor who ordered a bone marrow biopsy, which happened Yesterday afternoon.

Now is the long weekend wait for the results.  Waiting sucks and over a weekend it just ruins the weekend. Not that we had anything planned, but the potential that we could have done something is there.

Waiting to hear the bad news that my Leukemia has had a reoccurrence. Waiting to hear that I am going to have to have a bone marrow transplant.  Just waiting.

I put both of my D&D games on hold until I find out if I am sick again.  Can’t concentrate on anything.   Luckily, everyone has been cool about it.  I have such great plans for both campaigns. Just glad I hadn’t started finding people for a third game just to tell them, oh, never mind.

I think I feel most sorry for my wife.  This is being really rough on her.  She is supposed to go on travel on Monday.  She doesn’t know if she is going to go.  They offered to fly her out and fly her right back if needed.  That would suck.  I should know Monday but it might not be until Tuesday.  She just wants to know too.

Thank the gods that the republicans haven’t repealed Obamacare yet.  Obamacare put a cap on how much out of pocket that it can cost for treatment of leukemia.  Neither the House nor the Senate versions of the new health bills have any such cap.

I just hate the not knowing.  Simple as that.

Still hurting after all this time…

Pain is still the operative word of the day/week/month/months.  My back is still killing me.  I think on Monday I will call the pain doc’s office and double check that there hasn’t been any cancellations and I am still on the list.  The pain is getting worse.  All I really want is to be able to sit in a chair for 2 hours without a lot of pain.  I don’t think that is asking too much.  2 hours, 2 measly hours.

When I went to the pain doc in June, I had one point for trigger point injections.  Now I have like 6 spots on my back.  Easier to point on where it doesn’t hurt.  Plus my neck issue is acting up and its shooting pain down my right arm.  Grrr.  Pain sucks.  Sucks very much.  And it all started with one jerk who barely tapped my back bumper at a yield sign back in 1999.  Yup, for most of almost 20 years I have been in mild to severe pain, that is the back problem.  Not sure when I messed up my neck, possibly as far back as high school, so 30 years for that pain.

The first time I got trigger point injections they last 3 months.  This time the pain relief in that spot was 6 days.  Not good.  I am gonna end up back on pain meds, I just know it.  I am not happy about it, but if that is what it takes to get me to where I can sit, so be it.  So be it.

Pain was so bad tonight that I had to cancel my Friday night D&D game.  It was to be the final session of this story arc.  But no, I could not sit at my desk for 2 hours to run the game.  I just was hurting so bad.  I needed to be laying pretty much flat in bed, which is what I am doing now.  My laptop might be a POS, but it works for writing this blog when I can’t sit at the desk.

Mojo had a slight infection in both ears.  Got goop put into each ear and smeared around.  Was kind of expensive, but the little guy is worth it.  Next vet visit is for Pucky to have a deep teeth cleaning, one where they knock him out, he’s officially elderly now, he turned 7 on the 4th of July.  Beyond having his teeth cleaned they are gonna remove 2 loose teeth that aren’t/haven’t fallen out on their own.

I called to confirm with the movers for Monday morning.  The guy was all shocked that I called.  I guess no one else ever calls to make sure.  I also wanted to make sure to remind him that the place doesn’t open til 9:30.  I lost the keys to the lock, luckily the place I rent the storage locker at will cut locks off for customers as long as they have proper ID.  So it’s all good.

It’ll be cool to have nice furniture to set up on.  A big desk 72″x36″.  And the 2 cabinets and a bookcase.  I have a lot of stuff that needs to be stored.  Getting these pieces into the bedroom is going to be interesting.  Glad I am not the mover.  We just have to move them into place, once we figure out how the are gonna be placed.  For the desk and the printer cabinet we have a good idea of where they are gonna go.  So it just matters if the other cabinet and the bookcase will have enough room to sit side by side next to the desk. I think there is enough room, not sure.  I don’t remember exact measurements.  So its all gonna be put in place on the fly so to speak.

The remainder of the stuff from storage is going downstairs.  Not that there is a whole lot of space down there, but there really isn’t that much in storage after you remove the big furniture pieces.  A small fridge.  A toaster oven.  A 36″ round table (would have went in the bedroom, just ran out of room).  4 visitor chairs.  Probably a box or two.  A 4ft folding table.  I don’t remember much else.  The giant map of the world is going on the ugly wall here in the bedroom.  Basically anything else besides the earlier mentioned furniture and the map are going to the basement.  I guess this weekend I will go make some room down there when my back will let me.

I cancelled my therapy appoint, my shrink appointment, a dentist appointment and lunch with a friend so far cuz of this problem with my back.  Something has got to give.

Have I mentioned how much I love my wife lately?   Well, for the record, I love my wife.

While cleaning the back 40 we came across some old pictures of us and had a nice chuckle about how skinny we used to be.  LOL.  Oh so many years ago.  Now plump is the polite word for us.  But then again, most of us around my age are plump.

Disturbed’s – Sound of Silence.  It’s kind of my wife’s new go to song for testing anything electronic.  She got a new Bluetooth speaker for her Echo Dot.  She is testing it out in the bedroom, its 11:35 at night, we share a bedroom wall with our neighbor.  The song gets LOUD.   Teresa, I love her dearly, has little to not concept of how loud is loud.  I hope Gordy and his wife (whose name I have forgotten again) don’t complain about how loud it got tonight.

Speaking of Disturbed’s Sound of Silence, here ya go.

The weirdest thing, my brand new headset started having issues that my old headset was having.  Not being able to use the mic.  So I pulled the old one out of the trash and gonna play around with it some more and see if I can get it working.  Could just be a windows 10 patch issue.  Anyhow, it took my about 10 minutes to get my new one to work again and I am naturally not sure what I did exactly to make it work.

One person had something come up, so we started the Wednesday night D&D game without him.  The 4 that did show up had a great time, they missed out on some story elements, but got the main storyline down and got to where they were supposed to go.  The 4 of them fought 14 Dire Wolves.  Should have been a no brainer of a fight, but they almost all got beat on a little.  My rule about everything doubles on a crit made the rogue do 70someodd points in one hit.  Yup, I make criticals hurt in my game.

With the success of tonight and the continuing success of the Friday night game, Sunday afternoon is looking more and more promising.  I don’t think I will have any problems finding players, just everyone seems to want roll20 (bah, paint the picture in your head, old school).  I still don’t think it’ll be much of an issue really.  I think our Canadian friend would be willing to play on Sunday afternoons too.  He called my first DMing of high levels “EPIC”.  I love hearing those kinds of reviews.

Looking forward to Friday night, all the players should be there and its the finale of this storyline arc.  Not a great storyline, but its not bad either.  So, I doubt I will get any “EPIC” reviews, but everyone should enjoy themselves.  And that is all I really want is to have fun for a few hours and bring 6 people along with me.

I did well on Prime Day, my first new monitor is incredible. 28″ Samsung super monitor, works with my super video card.  Sweet harmony together.  I’m so happy I bought it.  My second new monitor arrives tomorrow.  A 32″ Samsung curved monitor.  It won’t be taken out of the box til after Monday.

We took out trash and recyclables tonight.  Took us about 10 minutes to get it all.  And tomorrow with all the rest of the Amazon stuff coming in, we are gonna have a boat load of recyclables for next time too.  Hopefully Amazon will merge what they can so we don’t have a bunch of little boxes.

OK, to sound like a broken record… my back hurts.  Even with the ibuprofen, it still hurts, just not as bad.  Just waiting for the pain doc’s office to call.

Mojo is going to the vet on Friday morning, we think he has yet another ear infection.  He basically gets one every summer.  Sucks for the little guy.  But the vet is only 2 blocks away and Dr B is really great.  So it could be a lot worse.  And I always take Pucky along too to help keep Mojo calm.

Teresa got an Echo Dot and instead of naming it something different, she is calling this one Alexa also.  Now she could have named it echo, dot, or amazon, but she chose Alexa, just like our Echo.  So right now with both in the room, they both respond when you say Alexa, but you can only interact with the closest one.  Weird.  Anyway, the dot is going into the kitchen so Teresa can stream music while she cooks.  Pretty cool.

A few 80s nostalgia acts have came thru Des Moines recently.  I should have went to a few of them, seeing as I am a huge fan of 80s music.  Def Leppard and Tesla were here.  I forget who else.  I didn’t find out about them until a friend of mine posted about the concerts on Facebook.  I guess I hang out with the wrong friends.  LOL, just kidding, I love all my friends.



A much better week so far

I actually made it out of the house on my own today.  I know, stange occurance.  I went to the Family Dollar down the stree, the pharmacy to pick up my med, and even to the grocery store in Waukee.  No depression, no anxiety, no nothing except hot, it was really hot and humid here.  Heat index was 106.  As I have mentioned before I can’t control my internal body temperature, once I start to get hot it takes a long time in the cold to bring me back to a normal temperature.  No difference today.  An 1 1/2 hour nap after getting back from the store in the AC did the trick.  I was back to comfortable by the time I got back up.  Anyhow, it felt good to get out, even if it was for just an hour or so, I really should get out more often.

All set for try #2 on starting my Wednesday night game.  Assuming no one has an emergency, we will begin at 5:05 central time tomorrow.  Not exactly night, so evening.  I am very much looking forward to this.  I even did things for this one that I did not do for the low levels.  Heh, I am more prepared.  Go figure.

I have been preaching to my players to check their headsets with the mumble server.  Good thing I listened to my own advice.  My old headset lost its microphone ability, the light comes on but it doesn’t hear anything, and yes, I checked mute both on the headset and in mumble and neither was clicked.  So out with old.  Luckily, I had a mostly new back up headset all charged and ready to go.  I bought it several months ago when my old headset lots its ability to talk to the little usb plugin.  I fixed that problem and decided to just keep using my old until it died.  Well, it’s in the trash now.  The new set works perfectly, so no mistep here.

Friday’s game looks to be back on too.  Not sure what happened, but magically the guy with the broken computer (the one who was the center of the story line) has a working computer again and can get back on mumble.  WOOT, yay.

My big monitor (well, 27″) is dying, whenever I  am actively using it, it flashes off then back on, but never losese signal.  So thanks to PRIME DAY at Amazon, it is being replaced by a bigger badder better monitor and the little monitor I am using right now is being replaced by a bigger badder monitor too.  Yup, I ordered 2 new monitors.  Well, actually I accidently ordered 3.  But 1 will be going back costing us a minor fortune to return.  My bad, shouldn’t try to do things on the computer at 3 in the morning.

Speaking of 3 in the morning, my sleep has SUCKED recently.  I used to get 7 or 8 hours with the CPAP, now I am luckily to get 4.  Then I am wide awake thinking I should get more sleep.  That has me waking up at 3 or 4 or 5 when I am lucky.  Makes life rough.  I end up taking naps, which end up messing with my sleep.  Viscious cycle.  BLAH.

For those that care, with the exception of my back, I feel great.  Yeah, my platelets are obviously low (bruises taking forever to fade, unexplained bruises) but that doesn’t make me feel bad, just makes me be more cautious.



We did it…

Well, my mood improved drastically today.  Love when my mood cycles out of crap fast, a benefit of being Ultradian Bipolar.   Nimodipine, the med I take as a mood stabilizer actually slows down my cycling to a couple days from much less time.  No, you didn’t read it wrong, I said I am on Nimodipine, a calcium channel blocker, for mood stabilization.  I am like 1 in 3 in the US on it and we 3 really like it.  Works as good as lithium for me without the wicked side effects.



As I talked about yesterday.  We cleaned the rest of the “back 40″ today.  Only took 3 hours because we took some long breaks.  If we had fought straight thru it would have only been an hour and halfish.  I had forgotten just how big this room is.  Its like 20×20, if not more.  The biggest bedroom I have ever seen in a house this size.  So we are turning the back half into an office/crafting area.  Teresa’s computer setup has always been back here, my computer and stuff moved back a week or so ago.

Now we are ready to get movers to move the stuff from my storage unit to here.  It’ll be nice having a BIG desk again.  36″x72”.  With lots of storage on the desk.  Then the printer table has a  bunch more storage, plus the bookshelf.  Gonna have lots of places to put stuff.  Much nice then the hodgepodge of furniture I have available to me now.  A kid’s desk, 2 different nightstands and a cardboard box.  I have to store most of my D&D books across the room.  It will be nice to have them close at hand.

Teresa discovered I am not a packrat or a hoarder.  I am just lazy and don’t want to go thru the trouble of throwing stuff away.  She made the distinction today as she is a pack rat.  I am just one to throw stuff I am not using into a pile.  Not really caring if its useful or trash, then I forget that it even exists.  In my defense, I do have a mental disorder with a lot of idiosyncrasies, being lazy is just one of them.

I have been toying with changing the idea of my Sunday afternoon D&D game to make it a Saturday afternoon D&D game.  Just not sure at this time and that is ok, cuz its gonna be 3 or 4 week before I decide to start looking for players seriously.  Passively looking I think I have 1 already and to him it doesn’t matter which day.

Really do wish I could find an in-person game instead of running a 3rd online game, but hey gotta take what I can get.  I don’t get to the gaming stores very often (been a couple years, pre-leukemia) since I stepped into one.  Gaming stores are the only way I know how to get localish playing games.   Mayhem comics runs a onine bbs, but its not very active.  I am betting they have contact info in the store for gamers.  Just would have to get off my lazy butt and go down there and see, also Jay’s Hobbies and the new place I can’t remember the name of, they both sell gaming stuff, so they might have a list of players too.  Once I get my back fixed.

Speaking of getting my back fixed, still haven’t heard from the pain doc’s office about getting me in earlier.  August 17th is looking FAR away.

Hmmm, gotta figure out where to put my current setup when the movers bring the office setup in.  I am kinda in the way.  So is some of Teresa’s stuff for the matter.  Have a few days at least to think about disposition of the stuff.  Plus we desperately need to vacuum.

I can tell my platelets are still low, this bruise is taking FOREVER to go away.

And finally, for the record:  I LOVE MY WIFE.


Actually got off my butt and went out with Teresa this afternoon/evening.  She asked several times today if I was up to going to HuHot and I kept saying No.  Still really depressed, still in a lot of pain.  But come 4:10pm or so, I decided that going out is what I really needed to do.  So, out we went.

First stop was HuHot, was good as per usual.  Only complaint I had was the cook burned my noodles a bit.  Happens from time to time. Also though, the pain in the back got worse.  That happens from time to time too.

Second stop was Penzey’s Spices.  55 bucks for the smaller bottle of double strength Pure Vanilla seems excessive to me.  But hey, it is what Teresa wanted, so its all good.  Teresa also go whatever it is that makes pastrami, she plan to make some for me.  I love homemade pastrami, so I look forward to this.

Then we went to Office Depot, Teresa wanted a new shelf for the front closet.  Office Depot had exactly what she wanted for 10 dollars less than Amazon.  Go figure.  I guess sometimes it pays to shop around.  I got 2 new surge protectors for my computer, the ones I have are OLD and have long sense became power strips.  So now, when I get set up with my desk and everything, I will be set.

Last stop was HyVee (which is a grocery store for those that don’t know).  Why?  Cuz eggs were on sale for 69cents a dozen.  And we got some Adel Dierdorf corn, happen to be some of the smallest ears I have ever seen, but Dierdorf corn is gonna taste good anyway.  Teresa kept asking if there was anything I wanted, by this point I was still very full from HuHot and in a whole new dimension of pain.  So I said no to everything, I am sure I will regret that later.

All in all, my depression is better, my pain is worse but it’s getting better cuz the 6pm ibuprofen is kicking in.

We have decided to hire movers to move all the stuff from my storage unit to the house.  50sq ft storage 80% full.  Only took them 2 hours to move my stuff from my office to the storage unit, should take them less to move from the storage unit to my house as my house is a good 20 miles closer.  So with tip it should cost us about 250 bucks.   Not too bad if it keeps me from melting when the temperature goes up this week.  Gotta call the movers tomorrow if they are open or Monday and get an appointment.

I have decided that I am gonna hold of on starting a Sunday game until after I have run the Wednesday night game for a few weeks along with the ongoing Friday night game.  Just makes sense to make sure I can handle 2 games before going into a 3rd.  I’m sure I can, but want to make sure.

I am going to be advertising for the game on reddit’s Looking for Group page.  And on a couple of Facebook groups.  Should have no problem getting players once I decide to start looking.  The Sunday group will be the first group I run without someone I know playing in it, EVER.  A little intimidating, but its all good.

And I have decided that I do not like roll20.net .  Well, it’s definitely not for me.  All the games being advertised on reddit seem to use roll20 and Discord.  I know I don’t care for Discord.   Roll20 is a website that lets you track all the players and rolls dice and shows maps and so forth.  Lazy DMmanship.  I can pain the picture in my players heads and I trust my players to roll dice and I trust players to keep track of stuff themselves.  I talked about Discord yesterday I think, does things I don’t know how, but I can’t record it.  And I really like having the option to record the game sessions.  So I will use pencil and paper (computer) and good old D&D Dice for playing and Mumble for the talking part cuz it allows me to record.

Oh, I am thinking of taking my wife’s old computer (remember I mentioned she commandeered my Mac) and turning into a mumble server.  Then I wouldn’t have to worry about using my friend’s mumble server.  Not that he minds, he offered actually.  But I would feel better running it on my own.

This weekend we are cleaning the rest of the back 40.  Most people use the term to refer to their yards, we use it to refer to the back half of our bedroom.  Yes, it’s that big.  We cleaned 1/2 for my set up now.  Need the other half cleaned out to bring my Desk and stuff from storage.  Lots of junk is piled there as of now as its been a collecting point of “stuff” for the 13 years we have lived here.

It shouldn’t take too long too clean out.  Throwing most of this junk away.  Just need to sort of the few gems in the pile and find a home for them.  I figure we will be done in about 3 hours like the first half of the back 40 took.

Slowly taking a class from Udemy.com (they have video classes for just about everything).  The class is on web development.  Supposedly, it will give me the ability to get a job as a website designer.  Don’t want a job.  Don’t need a job.  Do want to build at least 1 really cool website, which I will talk about in another post or six later.

Ah, the ibuprofen has fully kicked in.  The only pain that is still severe in the pain in my neck/shoulder area.  NOTHING I have ever done has taken care of that pain when it has decided to hurt.  Not acupuncture, not shots, not dilaudid, NOTHING.  I hurts and it hurts severely when it does.  The rest of the back feels ok now.