Wow.  What a busy day!   First up.  My counts are still good.  WBC is still TLTC as expected and my blood was lower,  but no transfusions needed!  Today I also started my neutropen shots to boost that immune growth!  Woot!!! 

Last night Amy and I sent my parents back to their room.  My mother looks like a different person.  What a good nights sleep will do!   My dad was stuck with laundry duty this AM.  We played Yahtzee last night and I get what chemo brain is.  I could not count to save my life.  After a game,  I went back to making duct tape rose pens which I don’t want to make everyone jealous…. But they are the hot item for the Prentice Hospital Nursing Team.  Lol

  

  

Then,  I heard a knock at the door and almost fell out of my chair.  One of my favorite Texan’s Steve stopped by for a visit.  He was in town for a conference and surprised me.  It was AWESOME! 

   

My mom and Amy were out to lunch,  so my dad and I had all the fun!!  That was such a great surprise for my dad and I.  I honestly don’t know who was happier to see him?   TIE!!!

After that my mom and Amy came back with some lunch from Eataly for me… Which I dogged since I was starving and my fave PA Kaitlyn came in.  Good news… No lupus!!  Bad news… The spaghetti I ate for lunch,  the steroids and the chemo have tore up my stomach!  No nausea which is weird…   I think I gave my friend Tara the best explanation after she was all excited about he new baby giraffe that she saw give birth on there webcam. Baby giraffes may be exciting, but I saw this happen in my room every minute since about 3:30 this afternoon

  

That may even be my Eataly spaghetti in the background!!!

Xoxo

Colleen

Here it is!

xoxo,

Colleen

PS-  AMY IS HERE

Well,  I’m excited.  My sister in law Amy is not far from the hospital!   It’s so exciting.  I mean,  not for Amy, but for me!  Less imprtany,  it is Steve Harvey Day!  My parents are there as I type!  I can’t wait to interview them later!

So,  last night went like many before.  Sleep is hard because of all the steroids.   I took an ambien at 10:30,  at about 1:00 fell asleep.  Then when my nurse came in at 2:30 to hook me up to antibiotic,  she gave me ativan and I slept a few more hours.  Finally,  I caved and asked for Zofran at like 5:00 am because I made the wise decision after a week of Cup of Noodles I decided to eat a PBJ and then French fries at 6:00 the night before.  I asked Dr Burt to put a French fry restriction on my restriction list.  He liked that and the fact that I was going for a healthy diet.  Lol

I needed a pain pill and got that at about 8:30.  So at about 10:00,  I sent my parents to the hotel,  my mom looked exhausted and needed to rest up for the big day!  I tried to sleep… Didnt happen,  but layed down for an hour.  Got up,  made my bed… Had my picc line wrapped for a shower (wish I had a cast cover or something… Has to be easier,  but I don’t plan on having it much longer! Lol), got dressed,  talked to the best housekeeper ever,  disinfected my room, ate,  did a bunch of laps,  talked to friends in TX and here I am.   Can you tell the steroids are getting to me.  I just pray I don’t crash!   I also have a good attitude I am adopting.  THIS WILL BE MY LAST WEEKEND IN CHICAGO!  This is the goal I am setting for myself!  This is what I want to achieve and through determination, prayer and NO INFECTION!   So please pray for that as well.    My wbc are officially too low to count,  so it’s a waitin game to get to 1 and get out of here!  I have an average of a week for this!  I CAN DO IT!   Nuetropen shots also start tomorrow.  They will help too!  

Xoxo

Colleen

PS – I am going to try and do an interview with the celebrities later.  Stay tuned!  Lol

Hi Everyone!

First off,  Happpy Birthday to my fellow HSCTers… j. & M. (Mon and Tues) and (D. S. and W. today). We have a good group here! 

So it’s day + 2 and I am doing well.  Thank God.  I’m spazzy from the steroids, a little tight chested (or short of breath – not sure) in some bone pain and have blurried vision from the steroids, but I haven’t had a fever so I will take it!!!!  My blood was low today… Around 8.1 so I got 2 bags.  I would think all the vampire movies would have prepped me for this,  but I was still grossed out.  I didn’t look for the 4 hours I got the blood.  They said it may give me energy and feel better.  I am happy to feel like I am today.  My white cells were at .1 today.  Tomorrow they should be TLTC (too low to count) and after that we start watching for them to go up.  When they hit 1,  I’m free!  That’s probably in another 8 days or so… On average.    

I was getting a bunch of mixed info and I was so freaked out from the steroids,  I figured I better go right to the source. I sent an email to Dr Burt’s PA (and my fave) Kaitlyn asking her some questions I’ve been wondering. I was sure to say that everyone is different and I was just asking for the typical and cookie cutter… I also realize I’ve never been cookie cutter.  Lol

1.  What is the typical theme for rATG fevers and reactions….

She said some people spike high a day or so in a row,  some low for the same,  some don’t run a fever at all,  but at that she feels at this point… I’m in he clear for RATG fever… Thanks to all the roids and medicine.  If I do,  it will be from an infection or sickness and that happens when counts are low… That’s what we want to avoid and that with MS,  we want to stop the fever while it’s nice and low,  so that’s what we aim for.  I’m happy to hear that.

2.  Bacteria Cultures – When I ran the fever,  the took cultures for all sorts of illnesses.  They take 5 days usually to come in but they can see if something is growing in a day or two. What’s with mine…

So far so good.  If all stays this way tomorrow, she will cancel the extra antibiotics that were ordered the other day.  The smear also came clear.

3,  I’ve had some outstanding tests that were sent away… Any news…

So far they are still waiting on some.  What Dr Burt is looking for is another underlying disease with the MS.  In this case,  Lupus.  He is concerned with the eye pain I have experienced in the past and when I first came in.  The good news is,  if I have Lupus as well as MS,  the HSCT protocol will work for this as well. He will just add a drug (ratoxin – I’m sure I got that completely wrong) before I leave.  That will halt the Lupus (God willing) as well.  It is not uncommon for Auto Immune (AI) disorders to stick together.  I have very early hashimitos (thyroid AI) that was found by accident while screening to make sure I didn’t have thyroid cancer like my mother did (also found by accident when she had her esophageal cancer surgery 7 years ago). My thyroid counts are normal and the effects of this are many years away (Actually,  I have no idea the impact of the HSCT on this… So who knows) but Hashimotos is very common in so many people and not something to worry about.  We will know in a few days about this.  

So what was the best thing I heard Kaitlyn say… She said “Colleen,  typically this is the point where you will start getting bored!”  I love it.  Bring it on… closer to boredom is the closer to home!  

 I thank you all again for all the prayers and love (please keep them up). I thank God for my amazing Neurologist in San Antonio (Dr. Gazda) and her fellow genius Dr. Burt and team here in Chicago.  Today I believe I am on the home stretch.  We can do this!!! 

Xoxo

Colleen

PS – Today is a big day in my family!  7 years ago today I was given my adoption referral for Rosie.  Basically,  that was the day I first saw her picture and heard specific details about her.   Still one of the best days of my whole life! 

It was a rough night no sleep.  Bad morning of fever and it was only about 99.7 at the highest.  I was freezing and shivering.  They gave me more antibiotics, anti fungal, anti viral, steroids and other things to reduce the fever.. It wasn’t even that high and I could barely function.  God willing, this is the worst… Dr Burt said all is going to be ok and this is normal. Most likely a late fever from the rabbit , but Im exhausted. After they did their rounds today, I got a ton of bloodwork and all the drugs, my fever broke and I found myself drenched. Dr. Burt  said this is typically the worst day, but the nurse said it would prob spike again in a few days.  He said at 99.7, it isn’t even a fever, but he wanted to head it off with the IV steroids before it spiked.  I trust in Dr Burt and hope to God this is the worst.  I know so many have had higher fevers, I can’t imagine. My poor mother is exhausted and my father is lugging laundry back and forth.  My sister in law Amy gets here In 2 days and she will be a sight for sore eyes.  Especially mine that seem to be filled with tears nonstop.  I even cried because the nurse brought me crackers and I thought that was so nice.  Steroids are not my friend and when I feeling, I’m left hysterical crying half the time for no reason…. Most times, I think need a padded room. 😷  I feel selfish and weak asking for this to be the worst.  Seems a small price to pay.  

Xoxo

Colleen

Of course….I miss my girl!

No Chemo – No Cure Remission! It’s all done folks!   I am on my way to a remission with God’s help.  We talk a lot with Kaitlyn while getting my transplant and she was helping everyone to understand the thing that will hopefully knock my disease out is already done.  It was the chemo and rabbit that I have had for days.  Today’s birthday of stem cells is a way for me to heal faster.  Now,  I will be weak, tired,  need blood, platelets and it WILL be a long bumpy road,  but I’m well on my way.  I am on my road to a life where I can have hopes for a future again.   My MS damage is still there.  I will still flare from time to time if I get sick or run down,  but that is nothing compared to fear of the unknown.  I can’t thank everyone enough for the prayers and blessings that you have given me. Here are some Pics and video from the main event. Frozen stemmies Defrosting stemmies All ready

Dad’s Blessing

A very small clip from the main event.

The drugs have me a bit emotional and punchy today.  Hope to be back to on soon.  They say tomorrow may be the hardest days as my cells find their way home.

Thanks aagain for all the blessings!

xoxo,

Colleen

Hi Everyone,

Stemmie  time is about 10 mins away.  Feeling drowsy from the premeds,  but ready to get this done and halt some MS progression!   I am very emotionals from the pills and when I saw them put the push they will use for the transplant and it was one of  OUR companies syringes,  I felt lke I have my whole family with me (both old and new).  Love you guys!

Xoxo

Colleen

Hi Everyone!

I hope you are all having an Easter/Passover full of blessings.  I know I am.  I am not putting all that new hospital makeup to use and utilizing any of it, but I wanted to share a quick video for you.

Also, here is a little “face in hole” compliments of Cristine!  Lol

Xoxo,

colleen

Hi Everyone,

Short post for today.  I am doing well.  Very tired and have slept through most of the day.  The exciting thing is that I slept through MY LAST CHEMO!  That does not excite me as much as the fact that Dr Burt said Pee Wee can come out tomorrow.  I am used to it,  but I want freedom that I have taken for granted these past 38 years…. Even if it has been impacted by my MS.  Lol.   I can say,  I have not had eye or leg pain since around pay -4.  That is a long time to go for me.  It’s amazing not to feel that piercing pain in your eye.  I know it may not last, but I will take what I can get..  

The last few days have been very similar.  I fall alsleep with the chemo premed and if I’m lucky,  I sleep through the Rabbit premeds… That’s is my goal.  The steroids with the rabbit is hardest on me, so the more I sleep through it,  the better.

Tomorrow is Day -1 and I get my last dose of rabbit.  Ironic it’s Easter so I will happily say goodbye to my bunny friend in the early AM.  Tomorrow I should also find out some info on my transplant time for Monday.  I am looking forward to that.  

The last few days have turned into a Dr Burt dormatory here.  All these friendly and familiar faces from the HSCT family are everywhere.  We’re all getting yelled at for going to close to eachothers room.  We have to save it for the walks,  which I have been lacking on with my earlier heart issues.  But, I did just do a few laps so yeah me! 

Rosie is having such a great time with her Nona and cousins.  She can barely stop to say hi to me.  She loves being a big cousin so much!  That makes my day everyday to hear.  

Well,  I am signing off for now.  The steroids are making my eyes blurry.  I’ll write or video more tomorrow!

Xoxo

Colleen

Happy Easter Everyone! 

Hi Everyone,

Another  video blog.  I’ve been sleeping all day.  You can really see the impact of the steroids on my face as opposed to this time week or two ago (Dan and Tom if either of you read this Don’t say a word!!!  It is steroids).  I smiled today when Dr Burt and the team came in.  That madeKaitlyn happy.  Dr Burt always finds something to laugh at in my room.  Yesterday was the cheeseballs I use to counteract the steroid mouth.  Today it was my hamper and my comment that I have my laundry crew to dash back and forth with clean clothes.  Well,  here I am in my round face glory!

xoxo

colleen