Stem Cell Day!!!!

 

Or Day 0 as they call it in here.

 

I got my cells back this morning!!!  Such an important day for me!!  Many call it a Re-Birthday.  If this works (and I'm confident it will) that's what I will call it too.  July 28th, 2014...my Re-Birthday.  Fingers are crossed that I celebrate two birthdays a year!

 

The process of putting the cells in is not very dramatic at all.  Collecting the cells is way more of a process.  Jeremy took video, and I really want to show it, but it shows me getting sick and I don't want everyone to see that.  So, if we can figure out how to edit some of it out then I will post it later.  Until then, my recollection of events will have to suffice.  They started at 10:04am and were finished exactly 30 minutes later.  I had two bags (They told me that most people have one.  Guess I'm a stem cell overachiever).  They thawed them out in my room.  They pulled them out of a freezer that had smoke coming out of it, so that was pretty cool.  It took about a minute to thaw the bags out, and they crackled as they were thawing.  Then they hook it up to my central line tubing.  They suck the cells into a big syringe, then slowly push the cells in.  When the syringe was empty, they sucked up some more.  It was definitely not how I expected it to happen. 

 

I instantly felt weird right after she pushed the first cells into the line.  I wish I could explain the feeling.  All I know to say is that I felt tingly and just weird.  And I immediately could taste the preservative that they put in the cells before they freeze them.  It was disgusting.  Tasted like a mixture of tomato soup and creamed corn.  They gave me mints to deal with that nasty taste.  I did OK until about halfway through.  Then I knew it was just a matter of minutes before I would get sick.  And I did.  It was pretty bad  They knew it would happen because it always does.  They said it is because of the preservative.  Oh, and the preservative takes a few days to get out of my system.  So that taste I tasted??  Well, I smell like that too.  I can't smell it, but everyone else can.  Jeremy said he is going to start calling me Campbell's (yeah, he has jokes). 

 

After it was all over, I slept for a good while.  As the day has gone one I have felt a lot better.  But, I am afraid it is a false sense of feeling good.  They tell me as my counts continue to drop I will start feeling bad again.  I'm taking advantage of this afternoon though.  I ate.  I haven't eaten since Wednesday.  I have had a shake every morning, and that's it with the exception of the bacon sandwich yesterday.  The metallic taste is back (happened last time I had chemo) and I'm seriously craving chips and salsa.  Hacienda chips and salsa to be exact.  My nurse is going to the grocery store tonight and bringing me back some chips and salsa since she knows I want some.  All the nurses are awesome.  Couldn't ask for better care that is for sure.  Anyway, I ate a pudding cup and some cheese crackers.  Then I had some sunflower seeds.  Then I ordered some French fries with a bunch of ketchup and a salad with a bunch of French dressing (the tomato thing I guess).  I ate all the fries, some of the salad.  I've lost nine pounds since I have been here so I suppose it is time to start trying to put some of that weight back on.

 

My vision is getting pretty blurry, but they say that is a side effect of chemo.  As I type this the words are pretty much not readable.  So I apologize for errors.  I broke out in a pretty crazy itchy rash that went away today.  They think it is the Cipro.  Didn't have it today at all, but they are giving it to me tonight again.  Guess we will see if that's the culprit. 

 

I'm just waiting to be unhooked from my pole so I can take a shower then go to sleep.  I'm still pretty tired but making myself get up and walk.  The tech told me today that the people with positive attitudes and get up and move around the most get out of here sometimes weeks before the others.  And since I want to get out of here, I'm not going to let a little puking and tiredness keep me down.  I really, really, really, really, really, really want to go home!!!!! 

 



Stem Cell Transplant Day 6

 

I have been here six days now, but it feels like six weeks.  I can't say that I like being here at all.  I already miss everything.  I've been doing ok I suppose.  Tired.  Nausea.  No appetite.  On the bright side, today I completed my 14th chemo treatment in six days.  So chemo is now officially over.  The side effects haven't fully kicked in just yet, but I'm hoping this is as bad as it gets.  I haven't eaten much except drinking a shake for breakfast for the last three days.  This afternoon I did manage to get down a bacon sandwich though.  I'm just not hungry, and that is really odd for me.  I love to eat! 

 

Tomorrow I get my stem cells back.  I'm excited and a little nervous about this.  They tell me that tomorrow I will probably be wiped out all day.  Then after that it will be day to day on how I will feel, because everyone reacts different so they can't tell me how I will do. 

 

That's all I have for now.  Hopefully in the next couple of days I will have more energy to update this blog.  In the mean time, we will just sit here and watch my blood counts and hope they do what they are supposed too.  And fast.  I really want to go home! 

Stem Cell Transplant Day 2

Remember last night for dinner I ordered a cheeseburger and fries, right?  And I didn't think they could screw that up?  Well, I wouldn't say they screwed it up as much as they just didn't bring it too me for TWO HOURS.  That's right.  Ordered at 6, received it a little after 8.  Everything was cold.  Couldn't get the bun off the burger because it was literally stuck to the meat.  I ate most of it anyway.  At this point who cares.  Food is food whether it's good or not!  So, this morning for breakfast I made a coffee Vi-Shake.  Delicious.  I have two nurses wanting samples now.  It's that good.  Anyway, about that time the "Classic Cuisine" room service dude walks in to get my breakfast order.  I tell him I already had a shake and that I might just starve to death waiting on him to bring me breakfast, and that even if he did it wouldn't be edible.  He was like, "Huh?"  I said listen, here is what is up with my food lately, and I told him what had happened.  He smiled at me then said, "Well, because I like you I will personally make sure your breakfast is brought to you quickly and that it is warm and edible.  But just for you."  Then he winks and smiles.  I told him he was on the clock and the timer started now.  He smiled and out the door he went.  Twenty minutes later as I'm walking the halls here comes my food guy, carrying my breakfast.  And it was warm and edible as promised! I was happy about that!

 

Last nights chemo was awful.  Just awful.  I have honestly never felt that way ever before.  This particular drug causes immediate side effects such as headache, jaw pain, and other things such as restless leg and I unfortunately suffered from all three pretty quickly.  The headache was what I would call a migraine, temples pounding.  The jaw pain felt like I couldn't open my mouth if I wanted too.  My ankles would not. stop. moving.  At all.  Nothing I could do about it.  They gave me morphine right away.  I had never had morphine before and really didn't want any but that's what the doctor had ordered so that's what I got.  I did learn something though.  I learned that I will never let anyone give me morphine ever again.  It made everything 50 times worse.  I honestly believed my head was going to explode.  I almost passed out and threw up on my way back from the bathroom.  I really thought I was going to hit the floor.  They put my bed alarm on after that.  Just in case.  Finally at 2:30 this morning they gave me Dilaudid and that did the trick.  Thank God!  I told Jeremy I wasn't sure I could do that much longer.  It was the most awful thing ever. 

The pills I have to take everyday before chemo on the left. 
The picture on the right is of the chemo that made me
feel so incredibly awful last night.  Notice it is covered
in a red bag.  That should have been a clue.  The second clue should
be when the nurse puts on a face mask, gloves, and two cover jackets so that
she can still have kids one day.  That's exactly why she told me they do it.  Just
touching this stuff evidently messes you up.  So there's that.

This morning at 10am I started chemo.  Two different drugs today, one of them I receive twice.  My last treatment for the night will begin at 11pm.  Strange time I think but they said they have to be 12 hours apart.  I have felt pretty good today, just a little tired.  I have walked the halls several times today.  It gets boring being in this room all day! 

My meals were much better today.  As you read above breakfast was timely.  Jeremy brought me some bagel bites for lunch.  And, at the advice of my nurse, I pre-ordered my dinner and told them I wanted it at 6.  It arrived at 5:45 and was actually pretty good.  At least that is improving!!

Tomorrow hopefully I will get into a permanent room.  This one isn't so bad, but it doesn't have a shower!!  They tell me they have someone being discharged tomorrow, so after that room is cleaned I can move in to that one.  Something to look forward too.  Otherwise, tomorrow should be a repeat of today.  Three chemo treatments, lots of pills, and hopefully good food.  Three chemo treatments down, eleven to go!
 

My toilet.  Has to be covered with this blue blanket
so that when my nurses flush it they don't get
my toxins.  That's so comforting. 

 

Stem Cell Transplant Day 1

Well, I'm here.  Arrived at 9am just like I was told.  Walk up to the admissions desk and the lady tells me that I'm not in the system.  Great.  Why not.  I mean, why would this go smoothly.  She tells me just to go have a seat while they figure it out.  About 20 minutes later another lady comes out to register me.  She tells me that I am supposed to be admitted, but the Bone Marrow Unit doesn't have my information in the system, and they seem to have lost my identification number or something like that.  So, she registers me and tells me to go back and wait again, saying that she is waiting on the Bone Marrow folks to call her back.  So, I go sit.  About 20 minutes later she comes out and says that my room won't be ready until between noon and 3pm.  Tells me we can leave and come back later, or just continue waiting.  Just at that time my transplant coordinator returned my call.  She said that we needed to go to the Bone Marrow Clinic and they would go ahead and do lab work and things like that to move the process along.  So, that's what we did.  Headed to the Bone Marrow Clinic.

 

I hope you aren't expecting anything exciting to have happened at the Bone Marrow Clinic.  Because it didn't.  We waited and waited and waited and waited and waited.  Finally my coordinator calls again telling me to go to Infusion Suite B.  I tell her that is where we have been forever.  She says "Oh.  Well then I will tell them you are there and they can get your labs."  Um...Ok.  Long story short, they put my in a little room but never take my labs.  I ordered some lunch while we were waiting.  A chef salad.  I figured two things:  1)It can't take that long to make a chef salad and 2)You can't screw up a salad.  Well, an hour and a half later I got my salad.  And it was disgusting.  Rotten tomatoes, wilted lettuce, slimy cucumbers, and the shredded cheese was melted.  What?  How the heck does cheese become melted onto a cold salad?  The turkey and the ham were yuck too.  Evidently I was wrong on both counts. 

 

Finally a little after 3pm my room was ready.  We get to the Bone Marrow Unit and find out the room I will be in is a temporary room, and that hopefully tomorrow they will get me into a normal chemo room.  Geez.  The nurse says she needs to do labs before we can start chemo.  Problem is my name isn't in the system.  Ok.  What the hell?  How does this keep happening?  Anyway, they finally draw blood.  The nurses are all super nice.  My nurse fell in my bathroom before I arrived so she was limping around with her knee wrapped up so she had to go get that checked out.  We were given a tour of the unit, and I was happy to learn that I can help myself to whatever I want in the Nutrition room!!  This is good news since the food here is terrible! 

 

At 6pm the nurse comes in to take blood cultures from my port so that they can say it is not infected.  Easy enough, right?  Well, if it wasn't me it probably would be.  But, since doing things the easy way doesn't exist in my world, it wasn't easy.  After obtaining a second opinion, my nurse came to the conclusion that my port has flipped and can't be accessed.  Yep.  That's right.  Flipped.  The doctor said to let it go for now, but that he may want a chest Xray in the morning.  Chemo starts at 9pm tonight. 

 

I just ordered dinner.  I ordered a cheeseburger and fries.  Surely they can't screw that up, can they?

 

Stem Cell Collection Is Complete!

 

Sorry to keep everyone waiting so long for an update.  I have not even had a minute to sit down and think about anything, let alone type a blog post.  So, to catch everyone up:  Monday I had my central line placed.  Let's talk about this central line for a second.  First of all, it is way bigger and way more annoying than my port ever thought about being.  Second of all, having this thing put in was way worse than having the port placed.  I'll walk you through the whole experience.  I get back into the procedure room, get on the tiny little bed, and lay there for what seemed like an eternity.  They guy that was getting everything ready had me turn my head to the left, covered up half of my face so I couldn't see anything, then walks away.  By the time the doctor came in my neck was already hurting.  So, doc starts doing his thing, gives me a shot in my neck to numb it, moves something around and then I hear him say, "Did you see that?  That was her vein collapsing."  WHAT??  ISN"T THAT KIND OF A BIG DEAL??  Guess not.  He continues on, pulling and pushing.  And by pushing I mean shoving.  It didn't hurt but was probably the most uncomfortable thing I have felt since giving birth.  My whole body tensed up at least three times.  Then, the doctor pulls the camera over me, tells the dude helping him to look at the screen and then I hear him say, "Well, looks like it kinked up on me.  Hmmm.  Go get me the _____ (no clue what he told him to get)".  After some more pulling and shoving he says, "There.  I think it worked itself out."  WHAT???  YOU THINK IT WORKED ITSELF OUT????  Next thing I know he says he is done and that was that. 

Thank goodness that process was over!

 Tuesday was stem cell collection day.  Best way to describe this process is BORING.  Like getting chemo but worse because you can't get up and walk around.  I was attached to the machine that they named WALL-E.  There was no being detached from him, so I was stuck in the bed for about eight hours.  This machine, WALL-E, was a really incredible piece of technology.  The nurse showed us the inside, which contained these super thin tubes that the blood spins around in and is separated into red cells, white cells, and platelets.  The machine is looking for a particular type of stem cell and this cell is filtered into this cylinder looking container.  Once it fills up, the machine slows down and dumps the cells into the bag, then starts up again.  WALL-E knew exactly how much of my blood was a safe amount to collect based on my height and weight.  It amazes me that someone was able to think up this concept.

This is WALL-E. 

Waiting to get started

Just chillin.  Producing stem cells.

The worst part of the stem cell collection process?  The bone pain and fatigue.  The bone pain comes from the Neupogen shots that I had to give myself for five days.  Since the shots stimulate stem cell growth, and stem cells grow in the bone, it creates some significant pain.  I wish I knew how to describe this pain because it is so different than any other pain I have ever had.  All I know to say is that it hurt to walk and hurt to sit and hurt to lay down.  But, it is getting better every day.  So is the fatigue.  Tuesday and yesterday I was wiped out.  Today has been a lot better. 

 

The best part of the stem cell collection process?  I COMPLETED IN ONE DAY!!!!  About two hours into collection my nurse got all excited and told me that they like to see this particular cell count they are looking for to be above 20, and a lot of times they see it at zero.  Well, mine was at 111!!!  So, after 8 hours we waited for about another hour until we received the phone call that I was done with collection!! 

Me and my cells.  I will see them again in two weeks!!

Next Tuesday, the 22nd, I will be admitted to IU Health Hospital for the rest of the process.  I'm ready to do this and not ready to do this at the same time.  I'm ready to get this whole thing behind me, but I don't want to leave my kids.  That's the hardest part, leaving them.  I know everything will work out how it's supposed too.  I will be back home soon enough.  For now, I'm just enjoying these last few days at home as much as I can. 

 

If you didn't see my post on Facebook today, here it is again.  This man, Stuart Scott, describes what it is like to live with cancer perfectly.  I think everyone who is reading this blog should take the 14 minutes to watch this video.  Stuart Scott ESPY speech

 

Oh.  One more thing.  Our BFF's had a baby yesterday!!  And this little guy is just perfect!!

Bryce Thomas Latham.  He is adorable!!

 

 

The Countdown Has Begun

 

 

Well, today things were finally set in motion.  This last week of waiting has seemed like a month, but now that it's really happening it seems too soon.  I had what I would say was a minor panic attack  this morning after I received the email with my upcoming schedule.  My attention was quickly diverted though by the 30 minute phone call with the specialty pharmacy that I have to order my Neupogen shots from.  Geez.  Over the last two days I have talked to five different people at this place because no one seems to know what's going on.  Finally today someone knew what was up so I was successful in getting the shots ordered.  Hopefully they arrive on my front porch exactly when they are supposed too.

 

Here is how this whole process is scheduled to play out:  this Friday I start the shots (2 per day for five days, seven if needed).  On Monday I have to be at the hospital in Indianapolis for the central line placement.  Tuesday morning they will begin collecting my stem cells.  This should take 1-3 days and will be done on an outpatient basis.  So basically, Tuesday evening they will call me and tell me if they have enough or not.  If they do, we can go home.  If they don't, then we have to stay and go back Wednesday.  And that process repeats itself until they have enough cells.  I am scheduled for admission to the hospital on Tuesday the 22nd.  Chemo will start that evening and will continue all week.  On Monday the 28th my stem cells will be thawed out and put back in my body.  After that, we just wait and see if my cells do what they are supposed to do.  Once my white count is back up to a normal level I can come back home. 

 

Luckily, my visitors do not have to dress like this

 

 Now for the rules.  I can have visitors, but no more than two people at a time can be in my room.  All visitors must wash their hands thoroughly.  Surprisingly visitors don't have to wear face masks or anything like that.  No opened food or drinks can be brought into the room.  Only unopened items in the original packages from the store can be brought in.  I will have a mini-fridge in my room so I can bring in food/snacks so long as they are brand new.  And Jeremy can bring in Dr. Pepper's as well (This is a must.  The hospital doesn't have Dr. Pepper!!!).  I can't have any flowers/plants/stuffed animals in my room.  If someone sends any of those things they won't let me have them.  I can, however, have books, magazines, and newspapers.  I find it weird that those don't have to be new.  I can take a laptop/IPad, I can have my phone.  They told me that they have Boost and Ensure for me to drink since I probably won't want to eat.  I said, "I have my own shake mix, can't I just use that?"  The answer was yes as long as it is in a brand new unopened bag.  Yay for that!!!  Why on Earth would I want to drink Boost or Ensure when I already have something way better?!?!?

 

Now that I know when this is happening, we have to make a schedule of who, what, when, and where for the girls.  This is not going to be an easy task!!  It's one of those things (like Christmas shopping or packing for vacation) that shuts my brain down.  Too much to think about so I just develop a mental block.  But, it must be done.  And lists.  I need to make some lists.  It's so overwhelming, but I will get it done.  I always do. 

 

Now for some amusement.  I have been told some pretty whacky stuff lately at work by my probationers.  Bless their hearts.  So tonight, I will give you a sneak peak of what I deal with.  And, remember, this is just a small, small bit of what really happens on a daily basis.

 

Me:  When was the last time you smoked weed?

Probationer:  Years ago

Me:  That's interesting because this test is clearly showing positive for weed.

Probationer:  (In a very snarky tone) Everybody has a little bit of weed in their system.

 

 

My phone rings.  I answer it. 

Me:  Hello

Probationer:  Yeah, this is ______ and I have an appointment with you tomorrow and I need to change that if I could.

Me:  Why?

Probationer:  Cause I got into a little altercation last night and I was stabbed and I had to get 21 stitches.

Me:  WHAT??  DID YOU JUST SAY YOU WERE STABBED?

Probationer:  Yes.  I got stitches in my hand, arm, and buttocks.

Me:  Who stabbed you?

Probationer:  I don't know.