Hi Everyone,

Well,  today was shot and pill day #1.  The worse part about giving the shot itself is setting an alarm to do it.   But, after injecting Betaseron and copaxone,  anything is a pleasure.  Copaxone is like trying to inject maple syrup into your fat.  I prefer to eat it and let it turn into fat.  Anyway,  here are the needles for all you HSCTers out there.  





I thankfully brought my own needle cutter, alcohol pads and travel sharp container as they weren’t supplied with the needles and I wouldn’t have remembered to buy they when I picked up the prescription….  I mean it’s not like the neuprogen retails for nearly $10k or anything… Oh wait. Also, coworkers…  Please ignore the competitors alcohol pads…  They came free with the copaxone.  Lol

Today was another hard day, but it is nothing in the grand scheme of things.  I woke up, nauseous, I I have been and had to kiss this face for the last time in person for over a week..



Ok, older picture, but I wasn’t about to take one at 6:00 AM.   Fran and Rosie made it home safe and sound.  I don’t know if I could say the same for Vonna who had her kids and Rosie playing all day.  Lol

Anyway, back to my ever exciting life of side effects.  Before the shot and morning antibiotics, I watched a horrible vacation house hunting show and tried to choke down a bagel.  I managed and at about 10:00 decided to try and get some sleep to make up for the rough night of tossing and turning.  I didn’t, but I did watch a movie while laying down.  When I went to get up, I could barely walk.  The spasticity in my legs (both) was horrible and it has continued to be since.  At around 1:00, my brother got here and I managed to put some street clothes on (as opposed to my awesome pjs) and go out to lunch (thank you Zofran that isn’t really working anymore because I keep using it).  I ate a few bites and then subjected my brother to an afternoon of Marrige at First Sight… Which I am convinced may be the greatest downfall of American television… Not that this theory stopped me from watching it.  The highlight of my day, besides Tom arriving of course, was when my ears finally popped after 36 hours…. But that only lasted like 15 minute before they clogged up again.  So,   You can see where I am going here… Not much to blog about.   I’m hoping that tomorrow is better, but not expecting it to be.  My blood counts will be thier lowest over the next few days, so I will not be doing much outside this (barely gets a wifi signal) hotel room.   However, I’ll be sure to capture all the entertaining things that occur.  Now,  I’m going to try and finally sleep a little.  

Xoxo

Colleen

Hi Everyone,

Well today is Fran and Rosies last day in Chicago.  Thankfully,  they will be back in about 10 days.  I was told I could go back to Texas,  but they didn’t advise it since I’ve had this virus and chemo.  My body is just exhausted,  so I didn’t put up much of an argument.  This morning was a rough for me.  I felt like I took 5 steps back.  the nausea and headache were bad.  I took some nausea meds,  but was trying to lay off the pain pills.  I layed down and fell asleep at about 9:00 and at about 10:30,  I was awaken by a maniac with a laundry fetish.  For all those care givers out there…. Please note: Even if you love laundry and the hotel decides to remodel the laundry room, closing it for a week without giving anyone notice,  it is NOT OK to wake the person you are giving care to out of a dead sleep for laundry details.  Laundry in no way constitutes an emergency. I am not going to mention who did this….



After I was jarred awake like the building was on fire,  I decided it was time for those pills.  We stayed in the room for a bit and at about noon I decided I needed to get out of the room. We went to Eataly again and I forced myself to eat.  Surprisingly that helped, a lot.  Rosie was in heaven because her favorite food is salami.



   

We then walked a bit and headed back to the room.  Tonight,  we are hanging out and I am watching Fran repack their suitcases for the 18th time.  It’s amazing the lengths she will go through to avoid checking a bag.  😄.  It’s kinda awesome!  

Rosie told me she is sad she is leaving and she is going to miss me,  “but the internet here stinks”!  I don’t blame her.  It really ,  REALLY does stink.  

Tomorrow is Mobilization Day 6 and the dreaded pills and shots start at 7:00AM.  My brother Tom is also flying in for the week. So there will be a ton to blog about.   

Hope everyone has a great Friday!  Chicago is jumping tonight!  

Xoxo

Colleen

PS – Happy Birthday Uncle Dan!  We love you!!! 

Once I finally got back to sleep last night I slept fairly well until about 9:00.  I realized I wasn’t staying on top of my headache and nausea meds.  So I did a better job today and was able to step out and go to the American Girl Place with Rosie.  I wasn’t able to spend very long there, but I was so happy I went. She had “an amazing day” and so did we watching her.





I think my nausea is getting better, but my exhaustion definitely  isn’t so I will write more tomorrow.   

Xoxo

Colleen

2:30 AM – I knew I wasn’t going to be one of those people that handled mobilization like a breeze.  I shouldn’t complain,  I haven’t vomited (thank you Zofran), I haven’t had many of nasty side effects that I could have.  I just have constant nausea and a headache that pierces my eyes like shish kabob sticks (which is probably thanks to the Zofran and my MS putting up a fight).  I am still battling this nasty cough from what turned out to be caused by a form of the common cold virus (thank you stick up nose test)… and fatigue like I have never experienced…. with MS, that is saying a lot.  So… It’s not hell,  it’s just no breeze… Not even a wind.  I wonder if this one dose would be as bad without the cold?  I hope it wouldn’t.  I do have a lot more of this chemo coming in the next few weeks and although I will be in the hospital on much stronger drugs,  I want to fool myself into thinking I am normally a little stronger then I feel right now. I feel very weak.

Today I was playing ispy with Rosie.  It’s kind of our thing.  We have these ispy rhyming books and I have to admit, they can be really hard.  When she is at home with Fran, she will have a book and i will have a book.  We will each search for whatever the rhyme asks us to over FaceTime.  It helps with the distance (I am dreading the hospital time where I will not see her for 3 weeks). Anyway,  tonight we were lying in bed playing and I had a coughing fit.  She jumped out of bed so fast and ran in the other room.  I scared her and that broke my heart.  She is 7.  She is supposed to be scared of monsters under her bed and not her mom being sick. My heart did heal a bit when she told Fran I “coughed on my booger”.  

I know what I was like when my mom was sick.  I was 31 and I can still crawl up in the fetal position with just the thought of that time.  My wish for Rosie is a bad memory of the past 2 years… Well, of the bad times I mean.  There were plenty of good thanks to my enormous support team and mostly my parents… Who I can’t imagine what these past 2 years have been like.  I never want to know that pain. As much as I try to shield things (like crying in the bathtub),  I know I can’t spare the brunt of it.  

I don’t write this for anyone to feel sorry for me.  Please don’t.  I am so lucky (TH 4- I just realized what I said … inside adoption joke).  I stop every day and think of my life and how very blessed I am.  Every horror I faced would not have been a horror without love.  That is saying something. There are millions of people in this world battling this disease.  So many are so very worse then I am.  I found Dr. Burt thanks to my amazing Neurologist in San Antonio and I will have my life because of it.  My daughter will have a life where anything and everything is possible… As will I.  How can anyone feel sorry for that?

Xoxo

Colleen

PS – Dolly,  I really want to give you my wordpress password to follow behind me and correct all my spelling and grammar mistakes.  The iPhone app isn’t the best for helping. Lol. 

Hi Everyone,

Today is going better then I expected a day after chemo to go. That being said, knowing me and medication I didn’t expect it to go well.  Lol.    I’ve been very nauseous and fatigued, but am pushing through.  I haven’t eaten much, but love Just hanging out with my girl…. Even if it is just sitting on a chair watching her play.

My favorite PA at the doctors office called today.  My nose swab test came back with a cold virus,  so that has been what has causing the McD plague and making us all cough our lungs out.  So,  3 zpacks, 1bottle of delsym, 2 bottles of Musinex, a few jars of Vicks and we’re all still coughing.  I have, however, quarantined my parents to their own room so at least I am only infecting myself.

I am very fatigued today,  so I had special guest video bloggers today.  We hope you enjoy!

Xoxo

Colleen

I guess when you start a life changing medical procedure, things will shock and surprise you. You read, you prepare, you think you got all basis covered.  Well, not really.   I have to first and foremost thank my amazing MA and nurses at Prentice.  I was a little bit of a train wreck after the catheter incident that will forever be known as “Pee Wee’s Biggest Adventure Yet”.  I am not a big crier.  Typically, unless I am taken off guard ot hurt by a loved one I trusted, I don’t cry .  I don’t know if it was the steriods, the crazy amount of drugs or the surprise visit from pee wee, but I have done my fair share today.  Don’t get me wrong.  Mobilization day 1-2 itself was easy.  One quick chemo dose followed by 24 H of fluids and lots of meds to prevent side effects.  I had nausea and headaches that were very quickly taken care of with the nurses help. Pee Wee did have his benefits… Without him, I would have been up all night.   But, I just couldn’t help myself.  I talked to Rosie on FaceTime she tells me of little boys at school making fun of asian people and their eyes.  I cried (after I hung up AND after I told her to speak up and educate them), I talked. To my sister in law Amy and my amazing nephews … Cried,   I thought about our hotel rooms and the sickness my parents and I have battling… I cried,  I thought of Fran and all the hurdles she battled to get here and I cried, I thought of all the friends family and supporters who are out praying and  sending love to me and I cried.  Mostly, I thought of Rosie and Fran leaving and that made me cry…. Well, that and Pee Wee!  

Before I knew it, we were released (about 1:30… PWH is amazingly organized).  We went downstairs and stood in front of a PWH sign to take a picture when a volunteer told us we were not allowed to take photographs near any signage.   I didn’t care much and started to walk away, but not before the security guard started to defend my picture taking  rights.  It was kind of hilarious, so we went outside.  









Fran and I beat my parents and Rosie home today.  They took Rosie to the children’s museum earlier that morning and she was on cloud nine.  We came back to my room… Gloved up and got to work,  we used hospital grade wipes, gloves, and masks and wiped ever possible surface down in the room.  We had to through every opened food container away in the event it was contaminated with the McD plague. 2 garbage bags full (that made Fran cry).  We prepared the baskets of laundry to be done for any coats or sweaters that may not have been washed. My parents got home and my poor father (the sickest of us all and patient 3) looked like he was terrified to set foot in the room.  My mom and Fran quickly moved their clothes and bags around so Rosie and her would be in my suite on the pull out while my parents had theirs.  Then I got nauseous again, took a pill, took a bath, ordered food and then the best part of my day happened.  It was my miracle cure for all the emotion I felt that day and it was exactly what I needed. It was the last time I cried.



 the food was delivered shortly after this photo was taken, I have no ida how any of it was because I slept, and slept, and slept… Until about 9:00 tonight.  I woke up nausous and with a headache.   Took some pills, ate an English muffin (that by the grace of God was in a never opened package) had some water and gingerale.  Heard all about how Rosie went on the elevator and the door shut so she went to the 1st floor (she was affraid if she stuck her arm out it would get cut off) and returned safely to grandma and Nona on the laundry floor.  I heard about the children’s museum and got attacked by a fake bug that she got there.  Finally I returned some texts, reported a package lost and then found to Amazon. Returned some texts and got to work here.   It has been a very long day dispite a 4 hour nap. 

I don’t know what I would have done without Fran and my parents (patient 0&3).  I know what it is like to have people you love sick.  I’ve lived a great deal of my life experiencing this.  I am so blessed and in awe that everyday I get to have these people in my life who care and love me.  I Thank God everyday that I have the perfect daughter in Rosmary and that I was given the chance to take part in this miraculous treatment.  One that will prevent a future where my daughter is my nurse.  One where she will have to feed me, dress me and morn for me while my body lives on.  That was the road I was on.  Dr. Burt and God are making that life fiction and giving me a life to live to the fullest.  I pray that I inspire even one person to peruse HSCT.  I will tell it like it is.  Good, bad and ugly…. And by God’s grace I will live a life worthy of this miracle.

Xoxo

Colleen



Hi Everyone,

We made it through the night, Fran and I, with little to no complications, but I woke up today very nauseous, coughing with a headache. I most anxious and upset I am is over this “catheter and tube” (Ativan wore off).   It doesn’t hurt… It is just there and very, very uncomfortable.  I decided I need to name it . I’m going to have it in for the first 5-6 days of my next 3-4 week stay and I can’t let it control me like this. So Fran choose a good  one…Pee Wee Herman. It seems fitting.  It’s not going own me like this.  MS, Chemo, testing, everything else I put up with, I take like champ. This plastic monstrosity has owned me for over 24 hours.  No more… Pee Wee – it is on!  (Also, they gave me more Ativan).  Lol.  Dr Burt just came in and asked me what Dr B thought about my spinal issues.  I told him that Dr B said that I clearly had back issues and I clearly had MS issues but he wasn’t overly concerned.   He asked if I saw a neurosurgeon at Rush and I said no.   So something tells me that my be in my future.  Fran told Dr Burt that we named the cathather… He of course wanted the name and when we told him… We got a chuckle. My NP Katlyn will be back again after rounds to go over all the discharge papers and God willing within 3 hours I’ll be on my way to the room without Pee wee… For now, here are some drug induced no makeup pictures with glasses I would never allow to be posted if I was in sane mind!.





Xoxo

Colleen, Fran and Peewee! 

Hi Everyone,

DISCLAIMER****I’m going to expose more then I normally would here because there many people reading this who are going to get HSCT.  I want to tell it all and that’s what I am doing****

Well I made it to mobilization and got chemo!!! I did quarentine my parents and they were not allowed to come so Fran was my support today and boy was she good at it.



Fran and I checking in at Prentice (I accidentally went to Feinberg… Oops)

Soon after we checked in, I was taken to my room by an admission administrator who couldn’t have been any nicer.  He did his thing and the nurses came in to ask a bazillion questions and start my IV.          My veins were not cooperating and I was sure wishing I had one of my IV geniuses from Vista Infusions…. But they called in backup and it got done.  We started fluids and then Dr. Burt and his teams came by.  Since I am sick they stayed out the door. Dr Burt ordered a virus test for me and they had to stick a looooonnnnggg swap up my nose.  It didn’t hit my brain even though it felt like it did. Next,  they did a bacteria test that is not fun,  but it is apparently done every Tuesday here and upon check in.  It also involved a swab, but this time it wasn’t my nose.  OH NO!  It was my behind.  This was not in the manual…. Or if it was, I ignored it.     After their rounds,  one of his PA’s  came in.  She asked a million questions and re-asked about my MS history. I had created a massively detailed timeline and had it all with me.  I mentioned my frequent UTIs after IVIG because as many many MSers do,  I have trouble emptying my bladder.   At the end,  she looked at me and said…. I have to order a catheter for you.  The fear had to show all over my face.  I had never had one and never want one.   I was in shock mode.  These two poor nurses.   I could not relax,  how do you relax????  It was bad for a while until I got used to it.  Now I’m ok as long as I stay completely still.   I was a hot mess  and crying from the catheter for a while.(poor Fran)  They finally gave me ativan and a cough syrup..  Chemo was no buggy.  Just like every other IV. Just like others,  the side effects will come.  



After the chemo was started I moved to the chair.  It helped the catheter to get up.  I moved there and I said to Fran,  I think the nose swab hurt my nose.  It burns really bad.  No,  apparently it is a thing called wasabi nose.  I drank a gold drink and that made it go away.  



The BEST PART OF MY DAY was when my fellow HSCT friend Nate and his lovely wife (He is here for his 6 months from transplant)came to visit me.   It really lofted my spirits.

Now I’m back in bed waiting for dinner and for 24 Hours to go by so I can get released. We’re hoping we can be home by early afternoon tomorrow.  

Please say some prayers for an easy night!

Xoxo

Colleen