One Week to Go.

Firstly, it’s good to be alive.   Teresa is here with me, while I am getting chemo every 6 hours here at Mayo on Officially Day -7.  Teresa says I won’t lose my hair until after I get out of the hospital.  I kinda hope it happens sooner, but it’s all good either way.  Day (negative) -7 is one week from Transplant day.  It’s hard to believe it’s only 7 days until THE DAY.

Chemo started at 6am this morning and will happen every 6 hours for the next 5 days.  So I am do for my next round in about 4 minutes.  This first chemo isn’t very harsh.  It’s supposed to make me nauseous, but it seems the Zofran they gave me is keeping that from happening.  I’m hungry for lunch, so, so far so good.

The big bad chemo started on day -3.  It’s a much more brutal chemo, and will most definitely do things to my nausea level, even with the Zofran.   Plus, tmi incoming, it’ll probably give me diarrhea as everything seems to do that and its a know possible side effect of that chemo.  So, something to look forward to in the days ahead.


For some reason, every time they check my O2 level, the number initially responds low…  I am not out of breath, I do not have any oxygen issues, it just starts low and then works its way up as we talk about it…. weird.


We bought the Large Vogmask, which is the N95 respirator that I need to survive this…  It’s too small.   I can’t open my mouth without it coming off over my nose.   Very frustrating, more frustrating is that Large is the largest that Vogmask makes, and quite possibly the only one that comes close.  We have searched the net and haven’t found a viable solution to this problem.


OK, I drink water during the day, quite a bit of water actually.   The nurses are trying to keep track of my intake and output.  It’s a fun game.  TMI again, I drink a lot, I pee a lot.  So the numbers are bigger then normal, so what, it’s all good.


Teresa is off to go get me a chicken in Pokemon Go.  I can’t go to the different raid spots cuz well, I am in the hospital.  So, Teresa is taking my phone along.  It is really nice of her to do such, in my opinion.


Every nurse I have dealt with here has been super.  So far I am enjoying my little visit to the hospital because the people are so cool.


The doctors are trying to get me to get up and walk.  I have no problem with that.  I will walk several times a day.  Just when I am not walking, I prefer to be in bed.  It’s my jam.  It’s what I do.  The doctors can’t seem to get this concept around their heads. Oh well, they can lecture about getting up all they want, I  will still do what I do.  Which includes not a lot of sitting.


Well, the pharmacy fumbled the ball, it’s almost 1pm and my noon chemo hasn’t arrived.  This chemo running late is going to cause my 6pm chemo to be late, which is going to cause my middle of the night chemo to be late.  Grrr  The pharmacy isn’t impressing me much.

Last night I got my last med after 1am cuz the pharmacy couldn’t get their act together.


I only slept about 3 hours last night cuz of the pharmacy and cuz of the pain involved with the hickman port.  DAMN that hurt.  It’s feel better now as long as I don’t turn my head.  I did however, get a few naps in during the day today when I was feeling a bit better.


Overall, I am feeling a lot less anxiety as this moves on.  I feel that these nurses know their stuff so good that it’s senseless to freak out about it.  So, I am not going to freak out about it anymore.  And I will feel better for it all along.


Peace to you my faithful readers, hopefully I will be getting chemo soon.


A Day in the Life of a Transplant Patient

Anxiety reached new limits today and then came crashing back to reality.  Day -10 of the transplant process.  Not even an official day on the calendar, but a day at Mayo none-the-less.  Today was a day of meetings and information.  We met several more members of the team, everyone was very nice.  I don’t think I could have chosen a better place to have this stem cell transplant than Mayo Rochester.

Found out that Day -9, the first official day on the calendar, is going to be a day of getting platelets.  They changed the protocol and I didn’t need some of the meds they were going to give me.  So, instead of meds on Tuesday, it’s just platelets.  Probably only one package (referred to as a 6 pack) of platelets should get me to at least 50.

50 is what I need for the surgeon to put in my port.  Any less and they won’t/can’t do it because it’s too dangerous.  I need the port because Wednesday at 4pm I get checked into the hospital to start the chemo.

5 days of the first chemo aren’t supposed to be too bad, the other 2 days of the other chemo are supposed to make up for the first 5 and be worse.

Then I get a day off.

Then it’s Transplant Day.


Really cool thing is, my blood type will change in 6 months to a year.  This is due to the fact that my donor is A+ and I am O+.  When all my bone marrow is gone, no more O+, and all that is left is the A+.  Teresa and I both geeked over this completely, I think to the puzzlement of Dr. Alkhateeb and the lady who I have forgotten the name of who was present.  Can’t wait to tell my brother, he will geek over it too.


About my anxiety…  Yeah, this morning was really bad.  Hugely bad.   I was at the worst I have ever been I think.  As the day went on and I spoke with these people, the anxiety lessened and lessened.  Now, I won’t say it’s gone, but I will say it’s a LOT better.


Teresa and I have held a Pokegym in Portage for several days.  Really weird as we aren’t there to heal our Pokémon.  It’s all good.  Just weird considering that specific gym had changed hands like 6 times while we were in the area.

Speaking of Pokémon, I know I mentioned this before, but Mayo and the surrounding area is like a Mecca of Pokestops and Pokegyms.  And the sheer number of Pokémon there are to be caught is amazing.  I literally almost ran out of Pokeballs cuz I was catching everything.


The air conditioner is broke here at the Transplant House.  It was 84 here today, kinda making it unbearable inside of the Transplant House for most of the day.  Tomorrow, at least, is supposed to be cooler (even if it has to rain).  The broken air conditioner is supposed to be fixed on the 11th, which is not a huge deal for me since I will be spending the 9th 10th and 11th in the hospital.  So I only have to deal with the broken air conditioner for 2 more days.


Oh, Teresa has gotten around the No TV rule at the Transplant House.  Her Mac basically can play any TV show that isn’t on CBS.  So, we are sweating in front of fans, watching TV on the Mac and being anti-social.


Just cut my fingernails for the last time in the next few months.   Yeah, there is no finger or toenail cutting allowed while under the effects of chemo/recovery.  So, I chopped my nails real short.


Oh yeah, we found out from Dr. Alkhateeb about the potential after transplant chemo.  It’s supposed to be mamby-pamby and able to be done at home, done by Dr. Wehbe.  So cool deal there.  I feel like I dodged a major bullet for some reason.


Dr. Alkhateeb is very much on board on no more than 100 days here.  He even said that if my numbers are good and I am up and doing well, I could go home in as little as 70 days.  WOOT.


Just got the last of my lab results.  Platelets are still 20.  Hemoglobin is 9.6, which Dr Alkhateeb brought up today and I was gonna bring up today.  Hemoglobin has been on a steady downward trend over the last several months.  So, while neither number is surprising, both numbers SUCK.  So platelets tomorrow and a transplant in 10 days.


Good night folks.


Massive Headache, wrong meds.

I have a full-blown migraine level headache and only Tylenol to fight it.  My own stupid fault for not refilling my Imitrex shots.  But I will muddle thru and all will be fine.  I know these headaches are from stress/anxiety.  My anxiety level is thru the roof, but I don’t want to sleep away my last few free days sleeping, so I am not taking more Clonazepam.  Not going to do it.  Yeah, it may be stupid on my part, relief of everything could come from 1 pill, no headache, no nausea, but at the cost of not being with my mom and brother.  I came to spend a few days with my mom and brother and that is what I am going to do.  Damn the headache.


Pucky and Mojo have both taken to crawling/laying on Jim.  LOL.  Mojo was first even.  This is funny cuz Jim claims to be neutral at best to the Chihuahuas.   At least they have someone they feel comfortable with.  Mojo still howls when Teresa leaves, but I really don’t thin it’s going to be as bad as initially thought.  This is a good thing.


Last evening we went to dinner at the Industrial Revolution Bar and Grill in Valparaiso.  It’s the place that Rodney and I discovered by accident last time I was here.  The food was great, service was great, atmosphere was great.  The temperature was COLD and the food coming out was slow.  Now, I can handle slow for good food, let them take their time to make it right.  But freezing the patrons doesn’t make sense to me, mom accidently sat under a vent and even though she wore a sweater, she was COLD.  But overall the food trumps the COLD and I have introduced Jim and mom to a new restaurant.  We all left happy and full.


Tonight we are going for Chinese.  At the little Chinese restaurant on Lincolnway in Valpo.  I forget the name of it, but we went there a few visits ago and it was good.  So we all agreed Chinese sounded good, so that is where we are going.


Mind boggling that I start the serious crap at Mayo in 3 days.  And my transplant is in less the 2 weeks.  And people wonder why I am having anxiety problems.   Some serious crap is about to go to down TO ME.  Scary stuff, very scary stuff.


If I can survive the next 2 months, I should be in really good shape.  Most of the big milestones that happen in recovery happen in the first 2 months.


It’s after the first 2 months, that is when Dr Alkhateeb might order more chemo for me.  I am still not sure why he thinks I need more chemo nor am I sure how much more chemo he was going to order.  All I know is I am very against this.  I really don’t want more chemo, heck, I don’t WANT the chemo I am getting for the transplant but don’t have a say in that.


Oh yeah, for those who have an interest.  Here is the address I will be at for at least 110 days.

Jeff Campbell
c/o Gift of Life Transplant House
705 Second Street SW Room #50
Rochester, MN 55902

If you are inclined, please do not send flowers or fruit.  But cards and letters are appreciated.


Yup, at least 110 days at the Gift of Life Transplant House.   Funny when I told the lady there we’d be staying for 110 days she said “I will put you down for 120 and see where we go from there”.  Not the most reassuring voice towards the 110 days.  But hey, we did 4 nights there with no issue, we can do 106++++ more with no issues too.


My head is screaming at me.  Gonna cut this now.  But of course I will find some music.


We made it, and random babbleage.

We made it to the Region, more specifically my mom and brother’s house late last night.  We did make it almost exactly 6 hours, which is great time.  The joke of the night was “Teresa got her pilots license and we flew here.”  Anyhow, so comes the start of the minimum for 4 months away from home.  I am happy to be here with my family, but still upset as to having to be away for at least 4 months.  But anyhow, I am gonna make the best of being here and try to not freak out any more as Monday draws closer.


The being said, I am still plenty freaked out about Monday, well not so much about Monday, more like Thursday.  See, Monday is just appointments to talk.  Then Tuesday and Wednesday are just the taking of anti-seizure meds.  Thursday is when the chemo starts. 5 days of the lesser of the 2 chemos.  Then I get a catheter for the chemo on the last 2 days 😦  Cuz the chemo is so nasty they have to flush my kidneys continually while giving it to me.   Scary stuff.  Plus, this will be the first catheter I have ever gotten while conscious.   Stupid chemo.


Jim asked me if I wanted to go to HuHot tomorrow.  It’s 100 miles more in the car and Teresa wouldn’t be able to go cuz she has to work.  So I chose to pass even though I do love HuHot.  It’s just that I don’t really want to spend that much extra time in the car after 6 hours to get here and looking at 6 hours to get to Mayo.


I hate my back, every morning no matter how I sleep, I wake up in some level of pain.  It sucks.  Today my back hurts significantly, but I am not gonna take a pain pill.   I don’t want to be stonedish while around my family.  I am sure most of you understand.


Mom is making me an egg roll for breakfast this morning.  She says these egg rolls are “really good”.  So, we shall see shortly how good they are.  I told her I only wanted one because I don’t normally eat breakfast.  Her cooking for me brings back all sorts of warm fuzzy memories. — For the record, the egg rolls were very good.


Oh, for those who may have missed it.   I am having a Allogenic Stem Cell Transplant on the 17th.  Which means, I am getting Stem Cells from a donor.  I am not having a bone marrow transplant, which I thought I was getting earlier in the whole process.  Although, the who team is called a Bone Marrow Transplant Team.


I have no clue what I want to do today.  Jim asked, and my response was I was still asleep.  I am all for just hanging out here.  Lunch will probably be Steak n Shake, even though that is what Teresa and I had for dinner last night.  The Steak n Shake here in Portage is really good.


Part of me doesn’t want to go thru this transplant now.  No, I am not going to cancel, it’s just going to suck.  The whole process is just plain going to suck.  From the first meeting with the Pharmacist (Monday at 8:45) until the last day at the Transplant House, it’s gonna suck.  Just saying.


OK, I am done whining about it.  Sorry for the last section, just feeling sorry for myself.


Pucky is happy as a can be to be here.  Mojo is happy as long as Teresa is around.  This morning Teresa went out to get some stuff from the car, Mojo howled.  Woke everyone up.  I think it may be a long 4 months for Jim and mom.


We exchanged Birthday presents last night since I am gonna miss Jim’s and mine.  I got the D&D Legend of Drizzt (however it’s spelled) game and a cool tshirt.  We got mom a really cool Glow in the Dark Owl wind chime.  And we got Jim a really cool blue tooth skull speaker.  Surprised how good the sound from it is.


This might be one of the weirdest videos of all time.   So, here ya go.


One Day Until We Leave

Tomorrow we say goodbye to our home for the next 4 months or so.  I am gonna miss being here.  Even though this house has problems, it has become home and home is where you want to run when you are sick.  —  This trip has me full of anxiety, but I have talked about that before.  I got shrink blessing to take extra clonazepam if I need it.  I think I am just gonna man up and face it with what I normally take.  I do reserve the right to change my mind about it over the next couple of days.  — The trip to see mom and Jim is going to be a great diversion, even if its bittersweet see mom and Jim leave Pucky and Mojo.  The visit it too short though.  Only 3 days really isn’t enough of a visit.  But it is what it is and we’ll make do.


I live a boring life, I spent a half hour watching a police chase in Los Angeles today.  Why?  Cuz KCCI picked up the feed from KTLA and stuck it on my Facebook feed.  Now, I am not so boring as to search this kind of stuff out, but if it appears in front of my face, I am mesmerized.  And for the record, the cops caught the bad guy without any gunshots or beatings or anything.  Just a really well done Pit maneuver to put the really nice Audi sideways.


I stopped using my CPAP again the other day cuz I thought it wasn’t doing anything for me.  I am/was wrong.  Beyond sleeping somewhat (not much) better, I don’t have to get up as many times in the night to use the restroom.  So, although I am still way tired all day even when I use the CPAP, I will use it to not have to get up 5 or 6 times a night.  I still say I have UARS as well as Sleep Apnea, and need the funky mouth guard thing but that is a cause for after the transplant.


I tried to call my Primary Care Giver (Chris the PA) to give him the update on things going on with Mayo.  I promised him I would.  Well, it seems I have been amiss and not keeping him informed.  So I tried to rectify that situation.  He doesn’t work Tuesday afternoons.  Mindy, the nurse, is going to have him call me tomorrow before we leave.  So I will give him the information then.


Pokémon Go news.  I hit level 25 WOOT.  I Upgraded my Gyariados WOOT.  I just gotta do 20 raids to finish the next step in the quest.  Raids are a pain in the butt and hard to catch here in Adel, up in Rochester it is easier, but of course I am gonna be laid up.  Teresa will do them for me.  She is that kind of wife.


My platelets were 20 today.  TWENTY.  They haven’t went up in a long time.  And this time they went up 6 points in 4 days.  Go figure.  My Hemoglobin is down a little though, and white blood count is holding steady I think.  But my platelets surprised everyone.  lol. So, no platelet infusion for me today or tomorrow.  Hopefully no problems between now and getting to Mayo.


6 days until things start at Mayo.  16 days til the Transplant.


Oh yeah, I’ll say it here too.  Sprint Sucks.  They want 500 bucks to let me out of my phone lease.  I want out because I can’t get reliable data service here in Adel.  Things should be better up in Rochester.  But here is Adel, the data service sucks, flaky at best.


And with that, I will cut this blog entry short.  Let’s see if I can find some music…


I can’t believe it’s happening so soon

I think I finished everything Teresa asked me to do today.  It’s getting down to crunch time.  We leave for my family’s home on Wednesday.  Have to be at Mayo in a week to start the transplant process.  Transplant is in 17 days.  Teresa and I actually did bust our butts getting things ready this weekend.  90% packed, not in the car, but in suitcases and boxes waiting to get jammed in the car.  It’s gonna be a tight fit until we get to my family’s house.  Then we should have some room.  Pucky and Mojo will probably spend 6 hours on my lap, lets hope for no accidents.  But it’s all good, we’ll make it to the Region late Wednesday night.  We’ll leave the Region on Sunday when we get up and moving.  It’s a 6 hour drive to Rochester from the Region, so it’s not a big drive/rush.  We should get to the Gift of Life Transplant House around 7 or 8pm.  Then on Monday I have appointments, a lot of appointments.  And with these appointments it begins.  How do you like that totally unstructured paragraph, goes from what I have to do today to what’s happening a week from now and everything in between?  My English teachers are all failing me right now.


Tomorrow I am going to have yet another CBC at Dr. Wehbe’s office.  Yup, another blood test.  This one to see if I am even close to needing a platelet infusion.  If I am close, we will be defaulting towards giving me the infusion.  Dr. Wehbe and I came to an agreement that it would be better to give me one early as opposed to me having to go to the ER in the Region and get an infusion there or getting an emergency infusion at Mayo on Sunday or Monday.  Better to be proactive then reactive in this case.  Cuz a screw up can literally kill me.


Speaking of killing me.  I still feel really good for a person who is technically dying.  You’d think this close to death, I’d feel sick or something, but actually with the exception of anxiety, I feel damn good.  I think I have said it before here, but I’ll say it again.  It’s going to suck that they are going to pump poison (chemo) into me and take me, who is feeling wonderful and make me feel like total crap.  I so wish there was a way to do this without making me feel so rotten, but alas, I have to have chemo in order to accept the donation.


I’m afraid that Hectic.blog is gonna take a big hit if/when I get really sick.  I know Teresa is updating my Facebook and then CaringBridge.   The CaringBridge site is really well done, even if some of Teresa’s dates are wrong in her posts.  But I have been asked by several people to have Teresa do the Facebook updates she did last time, I relayed that request to Teresa and I believe she is going to keep my Facebook up to date if I can’t. https://tinyurl.com/ybmvsd9h  This is tinyurl of the CaringBridge site if you are interested in seeing that.  https://www.facebook.com/HecticMind is my Facebook.


Me getting sick from the chemo is pretty much a given.  Especially if there is more chemo after the transplant.  Last time I spent more time sick than feeling good.  Leukemia 2015, is either missing in my head or a giant blur of things that happened.  Hoping the MDS 2018 is a little less traumatic, but Teresa promises to take more pictures for me.  I have the strange feeling that MDS 2018 is gonna be worse though.


I’m gonna lose weight again.  I hope to be able to keep off some of it.  Would be nice to not only get a new set of bone marrow but to permanently be 20 pounds lighter.   We have pretty much given up fast food.  Teresa has been cooking every night.  Which she will continue while I am down and can’t at the Transplant House.  Teresa is an excellent cook and I am looking forward to her cooking.


Still don’t know what most of the appointments on the 7th are for.  Mayo updated their computer system and programs, and things aren’t working quite right or so it appears they aren’t working quite right.  Most of them say they are with “Your Healthcare Provider” which is cool, but technically I have a whole team of them, so which one?  I assume 1 of them is Dr Alkhateeb.  Beyond that I have like 6 I do not know who they would be with specifically.  But I will be there and all will be well.  I know I meet with the pharmacist first thing in the morning, then the research people which I agreed to help out.  Then nothing for a few hours, then a bunch of appointments that afternoon.  It’s the ones in the afternoon with no information.  Weird.


It’s something like 82 degrees outside today.  Yup, Spring in Iowa, gotta love it.  It’s supposed to storm the next 3 days.  Yup, Spring in Iowa, gotta love it.  I’m gonna miss it.  But hopefully Rochester doesn’t get so ridiculously hot and humid as it does here this summer.  It would be nice to be able to go out and sit on the deck and enjoy the summer (I am not supposed to get a lot of sun), instead of hiding inside with the A/C blasting all the time.


I wish the Transplant House was able to give out room assignments earlier than the day before you are to arrive.  As it stands now, we are gonna have to get someone to grab our mail for a week or so and pack it up and ship it to us.  Then our temporary change of address which we will send in should take effect.  But since it’s the first week of the month and most bills are mailed to us the first of the month, that mail in the interim is important for the most part.


I broke 1000 words again when I didn’t think I had anything to say.   Heh.


Things to do, so I’ll write on my blog

Teresa is reading a new book from one of her favorite authors… at least she is not freaking out about the transplant at this moment.  I’m doing my best not to interrupt her, she needs some peace right now, but it’s hard considering I am freaking out a little about T-Day coming up quickly.  My biggest freak out point though is still how we are going to fit 4 months worth of stuff into the little Dodge Dart.  I did tell Teresa that my little suitcase with the D&D books and the Skyrim book and the computer stuff is a necessity after she told me it wasn’t.  I am going to need stuff to do once I get my brain back in gear after chemo, so that suitcase is full of the stuff to do.


It’s Saturday, the day we were supposed to get really busy and get the non-clothing stuff packed.  Teresa is reading and I am blogging, needless to say, packing isn’t getting done.  I guess we will get on it after she finishes her book, cuz I wouldn’t ask her to put the book down (or her ipad, but same difference).


We bought these bags from Amazon which have stiff sides.  They have come in super handy on our trips, I think we have 6 of them.  All the little loose stuff; meds, Tylenol, fans, cables, stuff like that all go into these bags real easily.  The bags were made for grocery shopping, so they aren’t huge, but they are big enough for quite a bit of stuff we are packing in them.


My thumb is still messed up, since I did baby it for a week, I am guessing it’s just another joint in my body with tendonitis.  It doesn’t hurt continuously, just occasionally, mostly when I try to lift something.  Most often that is when I try lift my laptop one handed without thinking.  My thumb has hurt so bad the I have almost dropped my laptop numerous times.  I hope that it gets better eventually, cuz having your right thumb not working correctly when you are right handed is awkward.


I think Pucky and Mojo know something big is about to be happening.  I think they think we are gonna leave them here with Jay (our neighbor) taking care of them.  Gonna be a big shock when we drive them to Portage.  My mom does really love Pucky, not so much Mojo.  Pucky is a much friendlier dog.  Mojo is a chicken and is standoffish to people who aren’t me and Teresa.  But I am positive that Mojo and my mom will eventually get along well.  It’s not like they are gonna have much of a choice.


I know I have been writing a lot in this blog lately.  Well for those of you who have been with me from the beginning you know I started it as a way to blow off some anxiety.  Well, that is what all these blog posts have been, anxiety driven blather.  Sorry if it has bothered anyone, but again I point out that I write this blog for me.


110ish days, if things go according to plan.  That is how long we are gonna be in Rochester.  I still am having problems getting my mind completely around 4 months being away from home.  Worse, 4 months away from home while sick for a good portion of it.

If things go off plan, that 110 days can turn into many more.


The Gift of Life House isn’t so bad.  No TV in the rooms sucks.  No eating anywhere but the dining room is inconvenient.  Having to make your bed every day, um aren’t I an adult?  But having a meticulously clean place for 30 bucks a night is hard to beat.  Plus my morning blood draw can be done at the House, Mayo has it set up there, so I don’t have to haul my behind to the hospital every morning AND just about every afternoon.  I’ll just have to go just about every afternoon.


Dr Wehbe (my local oncologist) told me about how getting too many infusions can make you start rejecting them.  I have had A LOT of infusions since April 1, 2015.  Let’s hope I don’t start rejecting any time soon.  That would truly suck beyond recognition.


Oh, yeah, yesterday was PCH award day and yet again they had no winner for their big prize (surprise).  However, what did come as a shock was that they announced that the price was still available today and I believe they are having another drawing tomorrow.  It’s not like I am going to win, but I really hope someone does.


My book is on indefinite hiatus until I recover from Chemo Brain.  Which shouldn’t be so bad this time unless I do have the chemo after my transplant.  Then it might be a year to a year and a half until Chemo Brain is gone.  Otherwise I was looking at 3 to 4 months of not being able to think clearly.  I really hope I don’t have to have the extra chemo.