No news is NOT good news

I wrote my transplant doctor a message via the Mayo messaging system yesterday asking for an update cuz not knowing was causing me to start bipolar cycling.  Totally not fun.  Well, either he didn’t get my message (possible) or he blew off the message (likely).  I do not like where I am mentally at the moment and a simple message that said “Nothing has changed” would have made me feel a lot better.  But instead, what I get, is nothing.   Monday I will call his office and track him down.  He was the one all concerned that my bipolar would become and issue, well yeah, if you give me a little bit of information without any follow up.  Screw that.

If I don’t have a response from my message by Monday afternoon, I will call his office and hunt him down.  It’s not like it costs me anything but time, and I have plenty of time to waste tracking him down.  One of the good things about not working and not going to school, plenty of time.

I’ve been so tired the last couple of days that I haven’t really played any games.  The includes my new Railway Empire game.  Just haven’t felt up to thinking which is required for the 3 games I have which I will play.  Skyrim – which is quite possibly the greatest game (specifically RPG) made ever or at least that I have played.  Civ4 Warlords – A great game for its time, yeah, it’s a bit dated, but it is still a lot of fun.  Some day I will beat the game on conquest without nukes.  And finally my new Railway Empire game, I don’t know how much thought it’d take to play, but I am betting more than my tired brain can muster.  It is a full empire simulation, where you gotta build factories and such to make your routes more profitable.  I am thinking it’s a big thought game.

I haven’t been successfully napping the last few days.  20-30 minutes at the most.  I am used to multiple hour naps.  It’s all got to do with my mental state.  But c’mon, I just want to feel rested, is that asking too much?

Hey, I don’t think it snowed today.  We had a brutally cold rain, with substantial rain, but no snow.  Maybe we are done with snow.  A boy can hope.   It is almost (on the calendar) Spring, so it should be starting to warm up.  I like Spring usually, this Spring I am going to obsess over my transplant, at least until I get it and then I’ll be in recovery, so this Spring and most of the Summer is messed up.  Hoping to see some Summer at the end of August if the transplant happens sooner as opposed to later.

Heh, I don’t think I mentioned here that our dogs are not going to New York while I am getting the transplant/recovering, they are only going to the Region.  My Mother-in-law is unable to take care of them now, so my Mom stood up and is willing to take care of them.  Mojo only sorta likes my Mom and Brother.  Pucky loves everyone.  So this such be fun for my family, at least for the first couple weeks.  Mojo should eventually calm down (we hope).

If’n you are gonna fly your dog somewhere.  Don’t fly United.  We had a horrible experience years ago flying animals to Iowa via United.  And now with all the crap on the news that United is doing, I wouldn’t trust them with my fur babies, and I don’t recommend anyone else do it with theirs.

April 27th is the next Publisher’s Clearing House Day.  By then, I will most certainly be in recovery and staying at the Gift of Life House in Rochester, MN.   I guess we should tell our neighbors what is going on, just in case, ya know.  Would hate for PCH not to be able to find me cuz I am 3 1/2 hours north.

Well, it’s way after 5, so definitely not hearing from the doctor today.  Guess I will go find some music to end this and go about being braindead for the weekend.

Too much but not enough information

I think waiting to know if one of the potential donors can and will be a real bone marrow donor is worse the waiting of just not knowing.  I know they told me about the donors to help keep my mood positive, but what they achieve was making me fret more.  I hate waiting, I hate not having a clue how long it takes to find out, seriously, I just hate this.  I would have rather been 9-10 weeks for the whole thing maybe sooner as opposed to “there are 2 potential donors” but we won’t tell you how long that it’s going to take.  Bah.  The anxiety is so bad its actually affecting my mood, my mood is going up and down.  Not the best thing to be having bipolar issues right before I have to go before the cancer psychiatrist and prove I am mentally strong enough to go thru this.  Anxiety caused by knowing, but not enough.  Bah.

I haven’t played Skyrim is a few weeks, just haven’t been in the mood.  It happens.  I still think it is the best game to come out in years, and I am sure that I will be going back to it soon.  I just needed to take a break.

Yesterday, however, I started playing Civ4 Warlords again.  Couldn’t get a start that I liked, but I screwed around starting over and over again and again for a few hours.  Perhaps eventually, I will get the start I want and maybe beat the game on Conquest without nukes.

Today, I ordered Railway Empire.  If you ignore the ratings on Amazon, it’s supposedly a really good game.  Kinda like Railroad Tycoon on steroids.  I love railroad games.  I don’t know why, I just do.  This one if supposed to be really stand out pretty, and very in depth as far as managing your empire.  So I am very much looking forward to this game.  It’ll be here on Thursday around 10am.

I watched WWE Fastlane yesterday.  I can honestly say, it was one of my favorite PPVs of the year and if you go back a year and see my review last years Fastlane, I liked that one too.  Fastlane is still s stupid name for a PPV.  But hey, WWE had to come up with like 14 PPV names, they couldn’t all be golden.  Anyhow, as I was saying, Fastlane was a good PPV.  It wasn’t nearly as predictable as many of WWE PPVs, which is always a nice thing.  And whereas I am happy that A J Styles is going to WrestleMania to face Shinsuke Nakamura for the title, I did not like the ending of the 6 pack challenge.  The booking of Shane McMahon getting involved with the match was just STUPID.  Beyond the last match, I thought it was all solidly done.  Oh wait, I forgot that bit about the Bludgeon Brothers destroying the Uso brothers and the New Day, that was pretty lame.  I don’t care for the Bludgeon Brothers gimmick, I like both the wrestlers, but the Big Brute gimmicks are just lame.

John Cena just got thru challenging the Undrtaker for WrestleMania.  A part timer vs a retired wrestler.  YAWN.  But I guess they ran out of ideas for John Cena.

Beyond that match, I think I am looking forward to WrestleMania this year.  I have not always been able to say that.  It should be a good show this year, even if it’s gonna be pretty predictable in the big match category.

I hope to either be thru the transplant or not in the hospital for WrestleMania.  Again it goes back to just having zero idea of what is going on with the donors is annoying as all Hell.

I have been fighting the flu the last few days.  Not entirely sick, but not entirely well either.  I can’t afford to get really sick right now, but I guess now is better than in a couple weeks.  So, I will take the coughing and hacking right now I guess.  Just wish my body would decide I am sick all the way or not.

So, here is the deal.  When I find out anything, I will let you all know both in this blog and on Facebook.  I know those of you who care really are waiting with me.  So, you all with be 3rd or 4th to know.

too long in a car, but really good news

Been up since 5:30am.  No nap today.  It’s now around 10pm.  I should be wiped out totally, but I am still awake but dragging quite a bit.  It was a long, eventful day.  We started with a 3 1/2+ hour drive up to Rochester, MN, more specifically Mayo Clinic.  Had a blood test, they only took 1 vial, really weird.  Then sat around for a couple hours while I watched the blood test results via the Mayo Clinic app.  We then met with Dr. Shin who told us all sorts of good news which I will get into in a bit.  After that we went to a New York style Pizzeria.  Then we headed home, another 3 1/2+ hour drive.  Kinda a brutal day, but worth the drive up there.

Dr Shin told us that I have AML Leukemia again.  But we caught it in an infant state.  He actually said that it was “Fantastic”.  Had to correct him and point out that telling someone they have cancer is never Fantastic.  He went on to tell us that I won’t be needing extra rounds of chemo before the transplant as long as I don’t need a lot of platelet infusions between now and then.  By the way, my platelets were 31 (go figure).  Seems my platelets count is yo-yoing never quite getting low enough for infusions, so this is a good thing.  So, according to him, my platelets are stable.  Whatever, less chemo is what the main point was.   And the biggest and best thing that he said was that Dr Alkhateeb told him that they had already found 2 possible donor matches in the first week.  That is way cool.  I really hope that 1 of them becomes a real donor.  If that happens quick enough, I might actually get to see some summer this year.

And if I get to see some summer, I might, just might be healthy enough to go to Thanksgivingfest this November, and lunch with Andi and Shawn the day after.  These are my personal goals.  Thanksgivingfest, lunch and then Thanksgiving with my family.

Oh yeah, we were supposed to leave for Rochester yesterday and not have the long day we did today.  We didn’t leave yesterday cuz Teresa is sick still, she has been sick for a little over a week.  She was still sick this morning, but we had to go today.  And it was a really good thing that we did.

Tonight I have a wicked cough.  I have had a chronic cough on and off since first chemo.   Tonight’s cough is not the same chronic cough.  It’s a wet nasty cough.   I hope 1.  It doesn’t last and 2.  That if I was sick earlier and didn’t know it I didn’t pass it along to anyone at Mayo.

Teresa is now watching Valerian blah blah blah.  She was right, I don’t like it.  The main character has zero charisma.  And his love interest that is supposed to be a knockout isn’t that pretty.  It’s just not a very good movie and i don’t think it’s either of their faults.

Gonna guzzle some cough medicine and then probably go to bed.  But first some music.


Stupid Insurance Company

Teresa is writing a letter of appeal to our insurance company appealing their decision to not pay for the stem cell donor search that I need to live.  I have tried to write it a couple times, and all I have really come up with is garbage, so I will leave it to the professional and then just sign my name.  It’s really stupid that our insurance doesn’t pay for this search, my transplant doc was livid when he heard this.  It’s not like it’s optional for me, it’s either I get a transplant from an unrelated donor or I die.  Heh, seems pretty cut and dry simple to me.  I can’t think that insurance companies would intentionally be out to screw the blood cancer patients.  Hell, since it’s a privately funded insurance policy, I might be their only blood cancer patient.  Heh.

Tomorrow we are heading to Rochester, Minnesota for a blood test and visit with Dr. Shin on Friday.   This is a truly unnecessary visit but he seemed pretty adamant that I come see him.  So off we go.  The good news is we will be back home Friday evening.

There isn’t supposed to be any snow for the next two days.  So, that is a good thing too.  I would hate to do the 3 1/2 drive (OK, Teresa drives) if there was snow falling.  The 35 looks like a road that snow just blows across.  You know the 35, it was on the national news a few weeks ago for 2 major accidents cuz a lot of people around here do not know how to drive on slick surfaces.

I feel like complete and absolute crap.  Fatigue out the ying-yang and a massive headache for who knows how many days its been now.  Put these two things together and you get a totally crappy feeling.   Hoping that my platelets are 10 or below on Friday (gonna really suck and be 14, just watch) and I will get a platelet infusion.  That should help with both of the issues.  Definitely with the headache.

Teresa gave me a Maxalt in hopes of stopping my headache.  She switched to caffeine pills for her migraines (which are working great according to her).  Yeah, Maxalt is a migraine medicine, not sure if it works on lack of platelet headaches, but I was very willing to give it a try.

If Maxalt fails, I may bust out my last shot, I know from earlier use that the shots do lessen the headaches for a while.  The one tonight is a doozy, so lessening it might make it bearable.

Due to circumstances beyond our control, my mother-in-law will be unable to take care of Pucky and Mojo while we are in Rochester.  Thankfully, my mom and brother have agreed to take care of them for us.  So instead of them having to travel all the way to New York they are only going to have to ride with us to the Region.

Speaking of the Region.  Teresa and I will be in the Region, for a few days at least, when we drop off the dogs.  We do not know when this will be for sure.  But I will post here and directly on Facebook travel plans so any of my Region friends that want to see me before all this transplant business will have a chance to do so.

Also, any of my Des Moines area friends, if you want to see me before we leave for the transplant, let me know and if I am up to it, we will do lunch or something.

A friend of mine invited us down to Houston for a visit.  Right now we might not be able to afford the medical treatment in order to save my life.  How in the Hell would we be able to afford a trip to Houston?  I know her heart was in the right place, but there is just no way we could do it.  Plus I feel like crap.

Gonna cut this entry short, head not cooperating.

and Cori, I know you don’t like The Offspring.

I wish it was September already

Some day in the relatively (and I mean soonish on the greater scale of things) we are heading to the Region to pass our dogs to my mother-in-law who is taking them to New York with her while we are in Rochester.  We don’t have dates as to when this will happen, figuring 6 to 8 weeks, but if I have leukemia first, it’ll be a lot sooner I would think.  I’m gonna miss Pucky and Mojo, they were really there for me between chemo/infection visits last time.  But I am sure they will have a good time in New York with my nieces, who have expressed exuberance at the thought of playing with Pucky and Mojo.

Sitting here pondering how horrible the whole transplant and recovery is going to be.  LOL.  I supposed this is what other people do to while they wait for a donor and the transplant, think about how rotten it’s going to be until it’s not rotten.  Yeah, I know that ultimately (Assuming no chronic GVHD) I should be better than I am (not dying is better, but I mean healthier in the greater sense).  But until that point where I feel better, I am gonna feel terrible.

Dr Alkhateeb said that the chemo I get for the transplant is gonna be worse than the chemo I had during leukemia induction.  Since induction was so terrible that I don’t remember 98% of it, I think it’s gonna be hard to be worse.  But I figure, it’s gonna be bad, real bad.  I am so not looking forward to that.

He also said that I get dumped out of the hospital the day of or the day after the transplant procedure and that disturbs me on some base levels.  OK, I won’t be dumped, but will be sent to the transplant house.  This is assuming I don’t get horribly sick or anything before or during the transplant.  It’ll be weird being so delicate and not being in a hospital.   But this is how they do it, and they are #1 in the nation for these kinds of transplants, so they know what they are doing.

I just want the next 9ish weeks to fly by instead of crawling like they have been doing.  It feels like 2 weeks for every week at least.  Horrible feeling.

Teresa sent a message to Dr. Shin, the hematologist on My Team, informing him that my platelets were only 18 on Thursday. (I think they are lower today).  And basically asking him if this appointment is absolutely necessary, in a totally polite way.  It is 3 1/2 hours each way plus the cost to stay 1 night, and food too.  Plus Teresa has to blow 2 days of vacation.  So if its NOT important and absolutely necessary, we would rather not go.  However, I have the strange feeling that he’s gonna say it’s of upmost importance and we will be off to see him this Friday (leaving Thursday).

This might be tmi and a little gross…  but the reason I think my platelets are lower is that when I blew my nose this morning, it was as much blood as it was snot.  Very gross looking and kinda disturbing.  But petechial bruising is at a bare minimum and I am not bruising or bleeding anywhere else, so we are holding out hope of making it to Mayo.

Teresa was surprised today when I told her that cable goes out just about every morning for a few minutes.  I had mentioned it to her before I think, and she blew it off cuz it’s only like 2 or 3 minutes usually.  But I guess our neighbor was trying to use the net yesterday during this brief interruption and he let her know and I verified it.  It’s of minor inconvenience most of the time, so why would I have pushed it as an issue?

I did all the chances to win 1 million dollars or more on PCHLotto tonight.  Again, I know I won’t win, but wouldn’t it be cool if I did.  Not to have to worry about how we are gonna pay for all my medical bills and still have money left to do things like go on a cruise.  Anyhow, I got 30 or 40 entrants total in the 2 contests worth at least 1 million tonight.  And probably about 100 in the big one that goes all week that goes off tomorrow i think.  It’s just be so cool to win something for Publisher Clearing House.  At this point I’d be happy with $1.00.

Teresa’s anniversary gift arrived today.  I really hope she likes it.  As it’s our 25th anniversary, which is the silver anniversary, I got her a silver Celtic knot and a silver chain.  Since Celtic knots stand for 3 things and can be just about any 3 things (per several Celtic books I have read), I am gonna call the 3 points, Good Luck, Love, and Family.  We need 1, we have 1, and we are 1.  I think it’s cool.  The problem is I am horrible at keeping gifts secret, so I will probably give it to her way before April 2nd.

Anyhow, I think I have blathered on enough for tonight.  Let me go find some music and I will be on my way and you can resume your lives hopefully none the worse for wear.

Wasting time in the morning.

It’s 6am on a Saturday morning and I am wide awake.  That is in itself depressing.  I wanted to sleep in today, I probably could have taken more ambien when I first woke up at 2:30 and then went back to weird dream sleep, but no I just crawled back into bed and fell back to sleep for a couple hours, then 6 o’clock hit, and wham wide awake.  This does mean that I reserve the right to a good solid nap later today at a time of my choosing.

Naps are an important part of my every day life.  Well, since I stopped using the CPAP (I didn’t nap when I CPAPed).  A good nap, one hour or more, during the middle of the day makes me happier.  Really, nothing needs to happen for an hour or so after lunch.  Time for a little siesta.  So today, I will nap.

Mojo is so funny on the mornings that I get up and Teresa stays in bed.  Everything is cool until I step to the other end of our bedroom (where the computer is) then he starts growling and barking (waking Teresa slightly) until I can bend down and let him sniff me so he is sure it’s me.  This has happened pretty much every weekend day since we moved the computer desk into the bedroom.  Pucky, being the mellowness of mellow, doesn’t hardly look up to see me go, doesn’t care in the least bit.

My platelets were 18 on Thursday.  I showed no petechial bruising.  Everything was fine.  Fast forward to today.  Don’t know what my platelets are.  Have some petechial bruising on my arms (where I always show first for some reason).  We are hoping I can make it up to Mayo on Friday without having to get a platelet infusion before we go.  And then just get one there.  Not that there is anything wrong with getting platelets here, just I am gonna be in Rochester with time to kill, why not fill that time with an infusion?  We shall see if I make it that far on the platelets that I have.

For those that have read along, I was to go to the dentist a couple weeks ago but felt like crap that day and cancelled.  Well it’s actually a good thing that I did cuz my platelets certainly weren’t 55 and it’s questionable if my neutrophils were 1500.  And lets just say that a lot of bad things could have happened in my mouth.

I’ll be so happy when this whole mess is done.  9 weeks, then 10 days, the 100 days.  that is IF I do not have leukemia now and have to have chemo before I can have the transplant.  That would add a few months on to the whole schedule.    I have already written on my brother’s birthday party and the 30th high school reunion, still holding out hope for Thanksgivingfest and the day after, but even that is looking more and more like a longshot.  This year is looking like a bust.

Along with PCH.COM and, I have started doing PCHLotto.  Still am not winning anything of value, but it’s giving me something to do for part of the day.  But damn they run a lot of video ads, one between every game.  And there are like 40 games.  So, I am writing this blog while the video ads are playing.  I figure one of two things will happen, I will win something or I will get too bored playing these same games every day.  Either way is cool with me I guess.

Welp, I am still fairly depressed.  I don’t show that to Teresa very often.  Have to be strong for her, but since she doesn’t read my blog and the people who do I can trust not to tell her, I’ll admit it here.  According to everyone I have every right to be depressed about what is going on.   Who wouldn’t be depressed about a 2nd year of their life being stripped from them by Cancer?  It just sucks, plain and simple sucks.  I’d go into survival information and 5 year survival information, but that is just too depressing to think about in general, just leave it an not great.

At least there was half a good day out of it.

It appears that the big headaches I get are directly tied to the major dropping of my platelet level.  At least that is according to Chris (my P.A.) who has never seen a platelet level of 18 before.  He was very upset about said 18 on my CBC report.  I was like, “Hey, it’s not too bad”.  For those who don’t know, the normal platelet numbers are from 150 to 450, yes I am talking 18.  So I left Chris saying that I should make it to Mayo next Friday without needing a transfusion.  He was insistent on calling my local oncologist.  Which he did.  Of course he didn’t get to speak to Dr. Wehbe or even his normal nurse (who is on vacation I think) he got whichever of Wehbe’s other nurses on the phone who said the same thing I did.  If it’s not 10 they aren’t gonna do anything for me.  So me and my 18 platelets and my moderately severe at the moment headache are just chilling here, trying not to think too much.

Heh, I haven’t posted in a while, you guys don’t know what’s going on.  Monday and Tuesday were both beautiful days here in the middle of Iowa.  65ish degrees both days.  Was just wonderful.  I went out for lunch with my friend Drew on Tuesday.  We went to Gusto Pizza.  It was wonderful pizza.  It was Drew’s turn to buy, which he did, and then he went so far as to buy an extra pizza for me to take home for dinner.  It warmed up nicely in our super-oven.

After lunch I buzzed around town, saw another old friend, did a whole bunch of nothing but I did NOT sit around the house.  It felt so great being out and seeing people.  Yeah, I am deathly afraid of catching the flu, but it didn’t stop me from going up and saying Hello to people and having a good time not being cooped up in the house

After I got home on Tuesday is when the headache set in.  Now, I just assumed that I overdid things and the headache was my penance for having so much fun.  I swallowed a couple Tylenol and went about the rest of the day with a moderately severe headache.  Bad enough I posted about it on Facebook.  The kicker is that the headache didn’t go away, as a matter of fact, it still hasn’t.

Yesterday, I sat in the dark all day.  Hiding from the world.  Head was just hurting and hurting more.  I achieved nothing productive at all.  I barely even checked Facebook.  But I did post a second time about my headache 23 1/2 hours after the first post.  Exciting life person me plans to post again tonight the my head STILL hurts.

It used to be, in the time before blood cancer, I’d get these bad headaches, go in to the doctor and get a shot of Tordal.  This stuff just magically makes the pain go away.  Well, unfortunately, it’s a blood thinner, and I can’t do blood thinners anymore.  So bah, right now I just get to live with a headache.

Well, that is not entirely true.  Good old Chris did write me a prescription for an anti-headache shot that I give myself.  Imitrex I believe in the name brand.  I get it in shot form cuz it works so much faster than the pills.  Anyhow, assuming my pharmacy has some in stock and assuming Chris ordered the right thing, I should have those shots in my hands later this afternoon and hopefully have some headache relief shortly thereafter.

Oh yeah, I almost forgot to mention.  Dr. Shin (the hematologist at Mayo) thinks my leukemia might be back.  With my CBC results today, I think he might be right and that makes me confused, unhappy, scared, and a few other negative emotions.  I don’t want to have to have a couple rounds of chemo before the transplant and that is what the plan is if I do have leukemia again.  Damn Damn Damn.

I’m leading a BORING life right now.  B O R I N G.  Not really playing any games on my computer.  Quit both running my campaign and playing in a campaign on D&D.  Basically sit around the house doing much of nothing.

Heh, I guess I am depressed.  Maybe I can find some music to cheer me up.

ok, that didn’t help.  I think I’ll just take a nap instead.