ok, maybe I feel something about all this.

Well, I was wrong about needing a platelet infusion this week, my platelets were at 24.  This means next Thursday they will be low enough for an infusion that will carry me to and thru Mayo Clinic on the 30th.  It’s all good, Dr. Shin knows I am getting infusions when I need them.  It’s also, not like every time I need an infusion I am gonna run up to Mayo to get it.  Dr. Shin and the team up at Mayo will have to work with Dr. Wehbe down here.  Dr. Wehbe has already agreed to do whatever is asked by Mayo, and I am sure that is gonna be keep me alive between chemo runs.


I spent a good portion of yesterday trying to find a review of the hospital food at Mayo.  I can find tons of info saying they have food (duh) but seems that no one cared enough to say if their patient food is good or bad or just exists.  I’m gonna guess that it’s ok cuz Mayo is #1 in the nation and patient satisfaction is a big key in the rankings and the food is definitely a part of patient satisfaction.


I brushed a hot grill in the oven with 2 of my fingers on Monday, they blistered later that day, the popped overnight, and they have hurt continually during this whole process.  I don’t think they are infected, but they are inflamed, puffy and red around where the blisters popped.  Very painful, I will endeavor to never brush up against a 450 degree hot grill again.


I still don’t know how I am feeling about this whole transplant thing.  I still believe that I should be feeling something… Maybe I will when it becomes more real.  Still about two weeks away from talking to the transplant team, then maybe it will spark am emotion or two about it.


I still can’t believe (or don’t want to believe) that I am willingly gonna go thru chemo treatment again.  I do not have any details on how long it will take or anything.  But from what I have been told by someone who just went thru a bone marrow/stem cell transplant at Mayo, that it’s a couple months of chemo followed by radiation… totally killing my bone marrow so the new bone marrow has a place to be.  That seems really cool to me.  Supposedly, I will be conscious and able to watch the new stem cells being pumped in.  Looking forward to seeing that.


I am feeling pretty rotten about having to cancel my D&D game and leave the Friday night D&D game.  Everyone has been cool about it.  But dang it, I was having fun and so was everyone else.  We had just gotten started on both games really, and now I had to bail on them.


Tonight is Acute Leukemia chat.  I hope that a few of the regulars are there.  I want to let them all know what is going on.  They have been great support thru all this MDS bull crap, and they will be really supportive now that I am going for a transplant.  I wonder if I can still say I didn’t get a transplant cuz of leukemia?   I mean, I got the MDS because of the leukemia, but I am getting the transplant cuz of the MDS.  In reality, according to Dr. Shin, I should have had the transplant during leukemia in all likelihood.


Well, I know with the medical crap going on, our cruise is put on indefinite hold.  All the money that we had set aside for a vacation will be going to medical care.  Sucks, but that’s the reality.


I figure I am going to be in the hospital for my wife’s birthday and our 25th anniversary. That truly sucks.  I wanted to do something really nice for her and instead she will be sitting next to me in the hospital.  Man, the timing of this sucks.  I wonder if I can put off the transplant until after April 2nd?  I’m serious, they can keep me alive indefinitely with timely platelet transfusions.  Can we put off the whole thing until after her birthday on April 1 and our anniversary on April 2?  I’ll run it by Teresa and then if she thinks it’s doable, I will run it by the transplant team and Dr. Shin.


I’m glad my meds keep me happily mellow, cuz otherwise I’d probably be falling apart.


Pile of Paperwork, Cancellation, and help.

Mayo Clinic sent me a substantial stack of paperwork.  All the paperwork you normally fill out at a new doctor’s office and then some. Normally, I attack this kind of paperwork voraciously and knock it out in no time.  The stuff today struck me as daunting and overwhelming.  They asked for things I can’t get in such short notice.  They asked for dates that I have no clue of.  I did it though,  I managed to fill in all the blanks that were possible.  But there are things I am just not going to have.  If the lady I talked to originally had said I needed this stuff when I talked to her, I would have gotten it.  But receiving the request the Friday before the appointment on Monday, no chance.  They will just have to deal with it.

I am beyond anxious about this whole thing now.  I almost called them to cancel the appointment, but that would be stupid.  I absolutely Hate having an anxiety disorder.   Should be better in 3 1/2 days.  I will be there, and have been seen by someone at least.  It’s gonna be all good, but until I get to Minnesota, it’s not.


The weather here is supposed to be really nice next week.  The weather in Minnesota is supposed to be COLD, however, it is not supposed to snow until the day after we go home.  WOOT.  Wouldn’t want my mom having to drive is a snow fall.  Not that she can’t, having driven in the Region for many winters.  It’s just easier to drive on dry roads.


Sorry, got a phone call.  I’m back.  The phone call was actually a returned call from the Leukemia and Lymphoma Society.   Michelle, the Associate Director of the Resource Center called me.  We chatted for a couple hours.  She is gonna hook me up with all sorts of stuff in regards to my low platelet problem, as it is directly caused by my leukemia treatment.  She seems to think that there might be clinical trials that would possibly help me.  And she also seems to think there might be financial help with the cost of going to Mayo, normally I am opposed to taking money that could go to someone who is more in need, but I would take this to pay my mom back for the monies she has had to put out to come take me up there.  Also there is a nutritionist who might be able to steer me to the correct foods to stimulate my platelet production.  I am glad that I know about the LLS and glad that Michelle reached out to me in chat saying the LLS would help.  It’s nice to know they are backing me up too.


Grumble Grumble, The Friday night D&D game has been cancelled tonight.  Stupid cable problems for the DM.  He has been without internet for 2 days.  I went nuts when it was 12 hours for me.  But anyhow, all the great plans for tonight get put off a week.  BAH.  Now I got nothing to do tonight except stew in my anxiety.   The good thing though is we will play next week and the week after.  So it’s all good… I guess.


I know what I will do tonight, I will try to find a 6th player for my game.  The game starts in 18 days, giving a little over 2 week notice to a player.  That’s plenty of time to make a character and get ready for a campaign.  I should have little to no problem finding someone on reddit/r/lfg .  The last one I found there was a bit weird and horribly young.  But I am sure there are relatively normal people of a decent age that are looking to play D&D 5e entirely over Mumble.


Mom arrives earlyish tomorrow.  Probably like 11:30.  It’s gonna be so nice seeing her again.  I miss her so.  And I get to spend 3 days with just her.  Woot.  I don’t get to spend enough time with her.  I wish it was for something other than Mayo Clinic visit.  But hey, beggars can’t be choosers.  I am still excited to see her.


 

Steps forward in 2 medical issues. Yeah.

Progress on the back pain front.  I got an epidural shot in my neck again.  After this initial achy feeling, I should be pain free for 3ish months in my neck/shoulder area.  Then he finally ordered a set of x-rays of my spine, this is in order to see if there is any visible problem with my spine (there isn’t or if there is color my surprised).  In any event, this is first step of getting things done to make me have less back pain.  After he gets the results of my x-rays (Monday) he will probably order an MRI.  The MRI is to show all the muscles and veins and stuff.  He would then be able to see what is damage there.  This will be good.  Hoping to get the MRI scheduled before the end of the year.  Gonna be a pain in the butt to get it done between Christmas and New Years.  But yay for the first step taken to getting relief.


I go to Mayo Clinic, in Rochester, MN, from Dec 18-20.  This is for my platelet issue.  They could have gotten me in to see someone today, but that was kinda short notice to pack up and get there.  As it is, my mom is flying in on Saturday to drive me up to Mayo on Sunday, then we are staying til Wednesday at least.  Mayo said they tell new patients that it is gonna be 1 to 3 days. DOH.  So, I made me hotel reservation for 4 nights, just in case Wednesday runs late and we have to stay til Thursday.  Anyhow, I hold out a lot of hope that Mayo knows something that Dr. Wehbe doesn’t.  That there is a cure for treatment related myleodysplacia.  I do not want to be getting infusions for the rest of my life.  And that is what I am looking at right now.  So off to Mayo to hopefully get my platelet problem fixed.


It’s off Friday for our every other Friday D&D game.  Still not sure why it’s every other Friday and not every Friday, but hey, DM says every other, it’s all good.  Had a blast last week, and am looking forward to next week.


I still only have 3 players for my new D&D campaign.  I still have some time to find more, but it’s weird, I have 11 players for 2 campaigns before and only 3 for new campaign.  Oh well, I will find 1 or 2 more.  Rest assure we will have 4 maybe 5 players in my new campaign.  I’ve tentatively made some decisions as to what the campaign is going to be, I would post them, but they are not concrete decisions yet and at least 1 of my players reads this blog.  So just trust me when I say things are happening for it.  But still don’t know if it;’s gonna be Tuesday, Wednesday, or Thursday night.  That might not be decided until the week we begin lol.  Sorry guys, but that may be all the notice I can give.


Last night I forgot it was Thursday again.  I only caught the last 5 minutes of Leukemia chat.  I got to tell them I am going to Mayo.  They are very much rooting for some miracle cure for me.  It’s a real shame I have problems with remembering Thursday until it’s too late.  Those are good people who really are rooting for me.


I did go to Edwina’s Bipolar Chat and tell them about going to Mayo too.  Most of those people are rooting for me too.  Most of those people are good people who drew a crappy card from the deck of life.


I’m happy my mom is coming to visit.  I wish it was for a better reason (like she wanted to) and not because I needed to go to Mayo.  But I get to spend a few days just me and mom.  That is cool.   I love my mom.  She is the greatest.  I miss her terribly.  But I understand her desire to be back in the Region.  So, I just get to be happy when we visit her and she visits us.


 

I hope I am wrong

Today was a sad day.  I found out that a friend of mine who I have neglected recently passed away 2 days ago.  I’ve told people before that I totally suck at being a 3D friend, no one believes me.   Well anyhow, tomorrow is the funeral, I am going.  He was the only friend who came and visited me while I was in the hospital, so being at his funeral is the least I can do.  We didn’t talk often, we weren’t buddy buddy, but I feel I need to do this.  I don’t like funerals and I know nothing about Jewish funeral services, but hey, first time for everything I guess.  The world lost a great guy though.


I actually remembered it was Thursday and attended the Acute Leukemia chat for a bit tonight.  This I haven’t done in several weeks.  Most of the regulars were there.  I just didn’t feel up to chatting much so I made up some lame excuse and left after a half hour or so.  I did get a bunch of sympathy from them about my platelets.  I’m not sure that is what I need or want.  I just want this to be over and get my life back to “normal”.


I also went to Edwina’s Bipolar Chat for a bit tonight, something I haven’t done in several months.  That was directly because of my friend’s passing.  I needed to make sure they knew, which they did.  I should have known they knew, probably one of the first groups of people who were informed.  Chat was a big part of his life.


So, I have been fretting over the D&D game and getting our characters into roll20.  Well, our DM has decided we aren’t putting our characters into roll20.  He “trusts” us.  Which is cool.  We are starting at level 4, not like we have super-powers or mega-weapons so there isn’t a whole lot we need to inform the DM of.  So the game tomorrow night is on.  6:30pm my time, giving me time to have dinner, which is a good thing.  Otherwise I wouldn’t eat til like 10pm, which would suck.

I am very much looking forward to this game.  I haven’t been a player in a game in a long time (I am not counting the 2 sessions of 3.5 D&D I played right before getting diagnosed with leukemia).  It’s been over 25 years since I played any role playing game as a player.  And my regular readers will remember that I killed the 2 games I was running as a DM very recently.  I’m ready to be a player.  I’m sure I can be a great player.  Oh yeah, I forgot the 3 sessions I played (as a player) with Jon.  So, I have been a player in recent history, but for only 3 sessions, does that really count?  Anyhow, I am ready to play in a big campaign with lots of things going on and that is what I have been promised.


I am still dealing with depression.  I still can’t bring myself to play any computer games or really read anything.  So I sit around all day on Facebook and entering Publishers Clearing House contests.  I lead a boring life.


I realized today that I have been over a year doing absolutely nothing of value.  I am a bum.  I want to change that.  At least start doing more things around the house.  Don’t know if I am ready for laundry, but dishes perhaps, and picking up after myself.  Yeah, I should be able to do that.  All this idea, requires me being healthy enough to do it.  So, my wanting change won’t come about for a while I guess.  But dammit, I am gonna try eventually.


Found out today that the hospital wants me there at 7am on Monday and not 7:30.  It’s a 40-45 minute drive to the hospital.  UGH, gonna be waking up way early on a Monday. It could be worse, I could have had to be there at 5am for the 6:30am biopsy.  But it’s all good, I will be there on time and go thru the hoops that they make me go thru and be to the radiology department on time.


I think this biopsy is #8 or #9.  I got a lot of holes in my hip bone.  It’s all good, I don’t think there is a limited number of holes you can have in your hip, well I am sure there is a limit, but I think its a huge number being as it’s a big bone.


Sorry, this isn’t a video.  It is just the song I wanted to post the other day.  The video is too weird for words, so just kick back for 5ish minutes and listen to Dutch Singer Do (yeah, DOH) sing to DJ Sammy’s music.


Here, a list I pretty much agree with.  I like WatchMojo, their lists are interesting if nothing else.

SAD

Seasonal affective disorder (SAD) is a type of depression that’s related to changes in seasons — SAD begins and ends at about the same times every year. If you’re like most people with SAD, your symptoms start in the fall and continue into the winter months, sapping your energy and making you feel moody.

That is the definition from Mayo Clinic.  Mine usually starts end of September, but this year didn’t start til the end of October.  I actually thought it was gonna skip me this year.  Yeah, right, a boy can dream.

So, anyway, I am depressed.  Bipolar and SAD are a pitiful combination.  There ain’t jack medically they can do for me.  My therapist is out of town til mid-November and I am not going to talk to a sub therapist or do a video call with my therapist.  I am just gonna suffer thru this like I have every year.

It sucks, people still expect me to be normal happy Jeff, and I can put on a show of being normal happy Jeff, but inside I just want to crawl up in a little ball and die.  No, I am not suicidal, I never get suicidal.  I just wish that I was dead, big difference.


Teresa decided on which WoW character I am going to be playing with her hunter.  She chose my Warlock, not because the Warlock is better necessarily, but because he is a tailor/enchanter and won’t be poaching her metal mines.  lol.  She shot down my Fury Warrior and my Frost Mage cuz of the mines issue.  Oh well, I made it her choice.  Hopefully we will play our pair tonight.  I really do enjoy playing games with my wife, this will be a bright spot in an otherwise dark and dismal season.


Flexeril is still mainly keeping my back pain free as long as I don’t overdo things (like sit for 14 hours in the chair).  For some reason though, this morning my back hurt.  I’m 90% sure I took one last night before bed, but I could have forgotten it.  Anyhow, being mostly pain free is cool.  I can live with occasional breakthrough pain.  Would be nice if my pain doctor would give me something for the breakthrough pain.  Since my physical therapist said he couldn’t help me, that maybe just maybe, my pain doc will give me something.  But I am not going to hold my breath for anything.


I went back to the wiredclub bipolar chat today for the first time in a LONG time.  With the exception of 1 name, I didn’t recognize any other name.  But the 1 name was/is a good friend, so it wasn’t too weird, just a little weird.  I don’t know if I will be going back or not as of now.  It doesn’t help me to hear about other people’s problems when I am having serious problems myself.


I am finally over that NASTY cold.  Cough is minimal and dry, so I don’t think I am contagious anymore.  Physically I feel so much better.  The Zpack that online doctor#2 gave me did the trick.  Much appreciation of doctor#2 and more blah about doctor#1 saying 10 days before treatment.  She needs to look at the whole picture of my health, I gave her the history, filled out the seriously long online form.  She should have seen that I have had lung problems in the past and my white blood count is still not normal, so I have difficulty fighting off infections.  Not sure I am going to use the online doctors anymore, its only 10 dollars more to go to a in-person 3d Doc.  And Chris (my PA) is just blocks away.  Should have went to him in the first place.


The wind is blowing pretty hard yet again.  I wonder if we are do for another big storm?  No wait, we are due for snow/rain mix tomorrow night into Saturday, that’s right.   Snow is in the forecast.  BLAH.  I keep reading conflicting predictions as to what the weather is going to be like this winter.  Some are saying its going to be horrible, major snow and major cold, where others are saying its going to be the same as last year where it got cold a couple times and snowed a couple times, it was a nothing to complain about winter.  I am hoping for the 2nd choice, but I have a feeling deep inside that it’s going to be the 1st.  I hate the snow and ice.  I want to move to the Monterey Peninsula, California, where it stays in the mid-60s year round.  It’s just so expensive.  Gotta win Publishers Clearing House this December and bam we are gone from this one stoplight town.


Pucky and Mojo are both asleep under my covers as I lay here in bed.  They are like little space heaters, feels good.  But when they are both asleep and I am in bed, it’s actually really hard to stay awake.  And since none of the skype messages I sent out were returned, I guess there is nothing stopping me from napping with my pooches.


this song… for no reason…

I feel bad and its not Teresa’s fault

I do feel crappy today.  However, I don’t think I am gonna get this as bad as Teresa has/had it.  My voice is toast.  I have a pretty wicked sounding cough.  But I am not running a fever.  I am not all congested.  As a matter of fact, I may have something completely different than what Teresa has.  Heh, who knows.  I just figure I will feel crappy for the weekend and be ok by Monday.  That is normally how illnesses go in this house, I feel crappy for a few days, Teresa sits on her death bed for a week.  I guess that is good because right now my immune system is compromised.

editor note:  Teresa did not get me sick.


Way back when, Teresa and I did a big puzzle together, had a lot of fun doing it too.  Teresa had decided she wanted to do an adult lego kit build, but those are really expensive.  I convinced her to buy a couple puzzles.  We ended up getting a 1500 piece Disney Stained Art one, and a 1000 piece Disney characters one.  We have a table in our bedroom which will be perfect to do puzzles on.  I am looking forward to doing these puzzles with my wife.  I love spending that kind of time with her.


I made it to Leukemia chat last night.  Stayed for a little over an hour (it runs for 2).  It was a good chat.  Because it’s so specialized and you have to fill out a big form to get to it, we don’t have trolls.  And even whiners (not that anyone last night was a whiner) at least whine on topic.  I look forward to next week.


I signed up to volunteer to work the survivor’s tent at the Light the Night event this year. I really try to support the Leukemia and Lymphoma Society in any way I can.  I hope that the LLS is getting to more of the people who can use them.  I didn’t know about the LLS until AFTER I was out of treatment.  Heh.  Not when I had questions and doc was tip toeing around the answers.  Anyhow, the LLS is a great organization which really tries.  Anyhow, Light the Night is their big fund raiser for the year.  I am accepting donations for the Light the Night walk.  I don’t have the page to send you to yet.  But I have the app on my phone.  So if you are interested in donating, leave a comment here or msg me on Facebook, and I’ll be glad to help you out.


I have decided NOT to try school again.  Firstly, I don’t want to have the argument with Teresa and Secondly, I have screwed up too many times, I don’t want to do it again.  So, I am not gonna do it.  I think I could do it in a real semester, but I don’t want to go into debt to see if I can or can’t.  So no school for me.


Because I have a little voice and a sore throat tonight, Friday night D&D has been postponed 1 week, possibly 2 weeks if 3 of the players aren’t available next week.  I want to finish this story arc so bad… but fate keeps pushing it off.  Most disappointing.  But we will get this done and move on to the next story arc which is cooler than this one.  And hopefully we will be able to do it straight thru or close to it.


I love Zyrtec.  Fall is normally terrible to my allergies, but I have been pretty much allergy issue free so far.  1 pill a day and no runny nose or itchy eyes.  That’s a good trade in my opinion. If I take it too early it makes me sleepy, so it gets taken with all my other 10pm meds.  I take too many pills at 10pm, but Zyrtec is one I am not willing to give up.


I’m looking forward to Thanksgivingfest.  My friends who go to that I only get to see once a year, which in my opinion is not often enough.  But it’s all we can do.  I live too far away and direct flights are just too damn expensive.  So, once a year is what we get.  And I like to make the most of it.  The only other time they all get together is Superbowl and football is so not my thing.  So, I don’t make any effort to see them then.  If I made a trip to Indy any other time, I would only get to see a few of them.   Sometimes I just wish I lived closer to them.


It’s Thursday, right?

Well, mom just left to go to the airport to head home.  I am already missing her.  The visit was really nice.  I love my mom.  She is the greatest.  I do wish that she and my brother lived closer than 6+ hour drive away.  Yeah, I know its an hour flight, but that costs a bunch and money is well, money is what it is.  Anyhow, I know my mom doesn’t read my blog, but just in case she decides to….  Thanks for the visit, MOM.  We love you.


Got the results of my cat scan.  I have 3 gall stones of various sizes, which are doing much of nothing.  So, since they aren’t causing any problems, don’t worry about them until/unless they do.  OK.  I have 1 kidney stone, a little tiny 1mm (yes, 1 millimeter) kidney stone, which should eventually pass on its own.  Chris, my PA, offered to set up a kidney specialist appointment for me to see if they would recommend anything, I said nah, so I get pain every now and then, no biggie.  Certainly isn’t worth a copay to find out there is nothing to be done.


Wife’s car is in the shop, she is gonna take mine to go to work (if she goes in today, so far she has been working from home), which leaves me car-less.  Wouldn’t normally be a big deal, but today I have Physical Therapy at 3.  I should call and cancel.  But there is a small chance that her car will be fixed before then.   All that is wrong with it is the passenger side rear tire has a slow leak.  Not rocket science.


I’ve been having nightmares lately, I rarely have nightmares.  Not scary ones, but highly disturbing ones.  I think the pain is causing them… or maybe the flexeril I am taking to keep the muscles from freaking out.   Anyhow, disturbing is the correct word, I wake up thinking the most obscure thoughts and have trouble falling back asleep.  I will be happy when my back is “fixed” and I don’t have to take meds or deal with pain anymore.  Ha Ha Ha, a boy can dream, right?


I still haven’t been able to win a game of Mutant Football League (except the first when the other team had to forfeit for too many dead players).  I have scored in every game, but my defense sucks and whichever team I am playing against scores many more points.  It’s not getting frustrating yet, I am learning, I am getting better.


I am already back to CIV 4 Warlords.  Yeah, I didn’t get burned out for very long.  Still trying to beat the game in conquest mode.  I can get to 8 or 9 enemies defeated, but the last 1 or 2 are just annoyingly impossible.  UGH.  I don’t want to resort to NUKES, but that might be the only way.


I tried to play Skyrim some last night, but still suffering from Skyrim burnout.  So, I won’t be playing that for a while.  It’s ok, I will get back into it sooner or later.  I have no worries about that.  In the mean time I have MFL and Civ4 Warlords to keep me busy.


It wouldn’t be a Hectic.blog post if I didn’t mention my back.  I have found the times to take my flexeril which keep my back from hurting the most.  Yeah, the morning one knocks me back out for an hour or two, but for no pain its very worth it.  And the evening one just helps me fall asleep and lets me sleep thru the night.  I haven’t touched a pain pill in several days.  Woo Hoo.


I still haven’t written a letter to my old doctor letting her know that I am seeing a new medical provider.  I really should do that.  I got labs coming up in October and I don’t want to be called by her office when I am getting them done somewhere else.  Besides she did right by me, she is the one who discovered my leukemia.  However, it was definitely time to move on.


Teresa has this dream of putting heated floors throughout the living area.  I thought she was just talking about it, dreaming.  Nope, she is saving money specifically for that and wanting me to save my disability money too for the cause.  Personally, I think we need a new washer and dryer first, but since I don’t do the laundry and I do walk on the floors, my vote only 1/2 counts.  So, some time in the nearish future, we will have heated floors and no carpet.  I can live with that.


I think I have given up bipolar chats.  It’s always the same stuff every time I log in.  Same trolls, same whiners, same oblivious people.  It’s not that I am any better than these people, it’s just that I am tired of it, and have been for a while.  So, I don’t think I will be going back anytime soon.


Now, leukemia chat is a different story.  As long as they don’t start talking about how successful they are even though they have/had leukemia.  I am good.  I just always seem to forget it’s Thursday and miss the chats.  Really bad about that.  I know today is Thursday, but by this evening, I will probably forget AGAIN.


I took my morning flexeril a little late so I wouldn’t be so sleepy when my mom was getting ready to leave, you know, so I could spend a little extra time with her.  Anyhow, the sleepiness is hitting me now.  So, I am gonna split.  You all have a great day (whichever day you end up reading this).

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