Author: Colleen

Oops,  Wrong Walgreens 

~ Colleen ~ 1 Comment

Hi everyone,

It’s  getting close. Picc line on Tuesday and  Admission on Wenesday.  Today we did some last minute errands before Rosie gets here tomorrow. I printed a ton of pictures at Walgreens,  unfortunately, it was the walgreens down by the river…. And some in Texas.  Hey,  at least they printed them.  So Fran got the pictures I printed in Texas and my mom and I went to the walgreens neat the river on Michigan… Which is also 2 floors and WAY better then the one on State Street!  I had a delish smoothie.  We picked up the photos,  crossed the street and ran into Dylan’s Candy Bar.  There were only 500 people in there as opposed to the 5000 there last weekend.  We decided to walk back and on the way,  my mom (and dad… Even if he wasn’t there) bought me this awesome silk scarf.  I’m in love with it!  

It’s my favorite… Even better then the 10 that I bought on etsy!  We stopped to have a quick bite to eat at the Cheesecake Factory because I didn’t feel like dressing in anything other then the jeans, tee and sleep sweater I was wearing.  We quickly rushed back to the hotel to wait for Fran and Dan to FaceTime us from Rosie’s art show.   I was so upset about missing it,  but after facetimeing and seeing the ridiculous amount of people there…  It was okay.   I got to FaceTime with my friend Brooke and Kevin who were there with their kids . I saw their daughters art and Rosies:

  Like how I covered the names up.  Lol

 Rosie’s awesome groundhog!  

It was great to FaceTime everyone.  It was even better when Fran sent me the text and picture of  my friend Tonna (I changed the name to protect her… See Vonna,  no one will ever know) after her daughter yelled  “THESE PEOPLE STINK IN HERE”. Lord,  I love her kids!!!  They are AWESOME!  Finished by wrapping and filling eggs for Rosemary’s egg hunt in our room tomorrow. I can’t wait to get her.  I brought a new funky pop star wig for when I see her. Can’t wait for them to get here tomorrow! 

Xoxo

Colleen

PS- Still owe you all an overview of the stem cell process.  I’ll get it done before I go in!  

It Was A Good Day

~ Colleen ~ Leave a comment

Hi Everyone!

Thanks so much for all your support this week,  it turns out idle time in the middle of a stem cell transplant is not my BFF.  Today however,  I had a good day.

We stayed at the hotel until around 4:30 this afternoon.  Our favorite front desk associate, Katilyn,  came up to deliver a package and brought me some Irish prayers and medals from her church. She is so sweet.  She is definitely our favorite. We got dressed and then went to RPM for dinner:

   Parents

 Beets with blue cheese and Pistachio 

 Zucchini Fritta with an herb dip (excellent) 

 Gnocchis with marinara sauce (my mother wasn’t feeling the wild boar sauce it was supposed to come) 

  Mama DiPandis Bucatini with Pomadoro Sauce (mine – excellent as well)

  Handmade Cavatelli with Beef and pork Ragu

  Sicilian Cannoli’s 2 ways 

 Almond Cake with Brown Sugar Gelato. – Everything was delish (except the almond cake … It was a tad burnt on the bottom). 

 We kept an eye out for Juliana or Bill Rancic for Cecilia,  but sadly…. They were not in attendance.  I did live text her our meals … Which was kind of rude since she was hungry, but hilarious none the less.  

After dinner we went to the origianal Macy’s on State Street to check out their flower show.  It’s on until 4/1.  

 

My view of the 12 floors from the first floor.  Very cool

   Beautiful flower scene from the show   

 I had to sit in a hand chair 

 

A picture for my friends Brooke and Melissa!

We made one last stop to get some easter wrapping  paper and odds and ends for our Easter with Rosie this weekend. I also picked up a caboodles for the hospital (either I jumped back to 1990 or they still make them… WHO KNEW!!!)   

I also received the best package in the mail.  A homemade card and lots of snacks and things to do in the hospital from my amazing nephews.  Love them so much!!!  There were lots of pictures of them inside for my wall of pictures! 

 

Also received a nice surprise from my dear friend Diane.  I tore apart the chocolate so no picture.  Lol.  I really love the daily cards from my friend of 28 years Cristine. (I like to say that to rub in our oldness)  They are getting more and more inventive so that always puts a smile on my face.  

Well,  it is much past my bedtime and I have a ton to do tomorrow to prepare for Princess Rosie’s arrival and my admission to Prentice for the big event.  Once I get admitted, I will share some of my daily Chuck Norris calendar my BFF Jen’s hubby  Dominic sent me.  It’s our thing and they always make me laugh.  I have no idea why!  Lol

Xoxo

Colleen

PS- MOM! Quit bugging me about Trivia Crack. I will get to it when I get to it.  Geeze!

A Mid Day Pick Me Up

~ Colleen ~ 2 Comments

Today I was so excited to go out.  I didn’t care where I went,  but I wanted out.  The only thing I really wanted was my “Handful of Everything” trail mix from Target.  So we go.  Before we head into the store we decide to walk a few blocks to a cafe I saw on Yelp.  I don’t know what happened to me,  but my eye starts throbbing.  I explain it to people that it feels like someone stuck a shish kabob stick through the back of my eye.  Nothing helps but a high dose of antinflamatory (Torodol). I’m trying not to take this because I will need to be extra cautious to avoid anything that will enhance bleeding.   Anyway,  I walk into the cafe and I lose it.   I start crying.  Not ugly crying, but holding it in eyes tearing up crying.  I get nauseous…. Now I can’t eat and I feel like I am personally offending the cafe owner.   I try to control myself.  We leave and go to target,  still not any better.  I’m thinking I need the padded room at this point.  I’m not crying because of the pain… It’s because I was supposed to be home this week and I am homesick for my girl.  I know she will be here Friday,  but I can’t stop.  At this point,  I could laugh at myself for crying.  Now I KNOW I need a padded room.  Anyway,  I took an ativan to calm me down.  Thank God I had one in my purse and we head home… Trail mix in hand.

I am better once we are back in the room and I decide that I am going to cheer myself up the best way I know how.  I’m going to channel my Texas peps and put the shirt they sent me on. So, here it is,  my relief from the insanity that is my head today:   

 

  

  

I love you guys and I miss you.  You have all helped to keep me sane these past 2 years and you are still doing it from a distance!  ❤️😘💋

Honestly, I am much better since I got back.  I really think it is a mix of meds.  I am not usually like this at all.  I am going to venture out again in a bit to buy a dress for Rosie to wear to dinner Friday (and a matching one for her doll)  at the “Throw Your Money Away” American Girl Place. 

Xoxo

Colleen

PS – Happy Birthday Krista!  Wish we were home to celebrate with you.  Love you! 

Rough Night

~ Colleen ~ 3 Comments

Often times, exhaustion is your worst enemy when you have MS.  For me that happened last night. As tired as I was yesterday, I could not sleep.  My restless leg syndrome was on full force. I had bad pain in my eye (still do even after pain pills) and just could not get to sleep.    My legs are probably the worst.  It’s very hard to explain to someone what the feeling is.  My legs will jerk, I will have an overwhelming need to move them, yet that proves no relief.   Often, the way I can get them to calm down is to take a bath.  Unfortunately, the new room we are in only has a shower.  I took a shower at 1 and again at 3, but it didn’t help as much.  Showers make me nervous, I can’t trust my legs and I fear that I will fall. What a weird thing  to say… I can’t trust my legs.  But when you have MS, your body quickly turns into a different being.  I don’t always know what it is going to do.  So you learn to stare at the floor when you walk, stay close to walls and avoid stairs.  You learn to compensate for things without even realizing it.  I do this so much more then I even realize it.  I pray that HSCT will be the answer for me.  I go into this aggressive treatment with the mindset that it will stop my disease.  I don’t expect it to reverse the damage done, but for so, so many it has.  That will be a bonus for me.  

Unfortunately, the pain did not subside she I woke up this AM,  but I am pushing through.  We had every intention of going out today.  As you can see, Chicago  had different plans for us:

  

This weekend, I caught up with some childhood friends.  Over the past 20 years, we have lost the closeness that often happens as you grow up and move your separate ways.  It has been a blessing to me as the group texting provides the comic relief i so desperately need this week.  I also received the most amazing gift from my team in Texas.  A framed picture of everyone wearing shirts in support of me and a shirt of my own.  I cried opening it.  What an amazing gift.  I keep the picture near my bed and thank God every night for how blessed I am. When I put makeup on and get out of PJs, i promise to post a picture.    Every text, facebook message, email or call stops me in my tracks.  I can’t imagine what I have done to deserve such support.  It gives me such strength and words can never express the gratitude I feel for that.  

Tomorrow, I hope to post more about the next step of the HSCT process. This is the real deal and what will change my life forever.  

Xoxo

Colleen

PS – 4 more sleeps until my Rosie gets here.  

Exhaustion

~ Colleen ~ Leave a comment

so, I haven’t posted much, but I haven’t really left the hotel room either.  I have been exhausted.  To be honest, im not sure if this is a side effect of the harvest or I’m just exhausted, but… It doesn’t really matter.   

Yesterday we tried to get out for a bit, but we quickly realized there was no place safe for a nearly Neutropenic person in Chicago on a weekend.  We headed over to PF Changs and then I wanted to stop by Dylan’s Candy Bar before heading back.  BIG MISTAKE.  Probably the worst possible place I could be.  Every single person in Chicago thst was not on Michigan Ave was inside this place. I literally made it 2 feet before I said:

             

We immediately left and hailed a cab.  The cab was driven by a nice young woman who unfortunately had no idea how to drive or how to speak English,  I gave her directions to our hotel and I knew we were in troble when she missed the street to turn and tried to rectify the situation by going down a one way street in the wrong direction.  We quickly told her to let us out and walked the remaining 2 blocks to the hotel.  Once we got back, my parents went off to church and I got dinner ready.  Immediately after dinner I went to sleep.  I woke up at about 7 this Am for about 30 mins and then fell back asleep until noon ( which never happens).  My dad out to pick up some soup and I’ve been trying to stay awake since.  There is nothing on TV at all and the Internet is acting up again at the hotel.

I miss my Rosie so much.  I can’t believe I am going to have to go ~3 weeks without seeing her.  I could cry thinking about it.  I see her face on facetime and I know she misses us too, but is having so much fun with her Nona. They will be here for 3 short days this weekend before I have my picc line put in on next Tuesday and get admitted for the big show on next Wenesday.   I think too much idleness is my enemy. It seemed easier when I had bloodwork and testing to do.

Oh well, I’m going to see if that episode of Vikings I started downloading at 7 am is finished yet.  

Ill write more tomorrow!

Xoxo

Colleen

Ok, so I lied.  I will post today

~ Colleen ~ 1 Comment

All day I have been DYING to take this bandage off. I had to wait 24 hours and I did it.  I must say,  the scar/cut is anticlimactic,  but I think I may have been allergic to the tape.  It’s been hurting and itching so bad,  I mentioned this to Katlyn when she called today and she said they use the same tape for picc lines so we have to remember to mention it.  Ok,  get ready to judge for yourself.  This is my pre-shower incision picture: Edit 

  

Xoxo

Col

Mobilization Day 11 – One Very Long Succesful Day

~ Colleen ~ Leave a comment

Hi Everyone, I wrote most of this blog yesterday (Thursday), but completed it today (Friday).  All events below happened on Thursday.   😘 Today was the big harvest day and probably one of the days I dreaded most.  We all woke up (and stayed up) at 3 AM (unintentionally).  At 6:15 my mother and I took a cab to the hospital.  My father and brother followed on foot.  Our first stop was interventional radiology to have the dreaded jugular catheter put in and I was relieved they allowed my mother to come back with me.  We had a long wait of over an hour, but I kept entertained by a woman a few spots down insisting she be allowed to smoke before she is rolled to the back for the procedure.  The woman was clearly shocked of the no smoking rule.  My Mom and I just sat in our little curtained room in awe of the battle incurring.  What even shocked me more was that the nurse eventually rolled her out to have a smoke.  Hey,  I guess you have to do whatever it takes to shut up calm down a clearly self medicated woman (not me… Yeah, not me. Lol) Pic 1 Although they let my mother come back with me, she was not allow be in the OR. We departed ways and I spent 30 minutes in the OR, of which 15 was applying tape. Pic 2 After port was in, we had to The Blood Center on another floor to have blood drawn. Once that was done, We had about 2 hours until the results were in.   Tom, My parents and I went to the cafeteria for breakfast. Once we were done eating, we went back upstairs.  When we walked back into the Blood Center, we were surprised to hear that not only were my stem cell estimates back, but they were enormous! The needed amount of cells for HSCT with Dr B is usually about 2MM and I pulled in an estimate of 53MM!  We were all blown away.   So, we got to work.

It was a long 4-4:30 hours.  I was still in a lot of bone pain, but sleeping wasn’t happening.  Tom had to leave to  catch his flight out around 1.  I was back to my core support team.  The lab man came around at about 3:15.  When They both saw the “please don’t make me sleep with these tubes hanging out of my neck” pathetic look in my eye, I knew he would wait.   I even offered to have both my parents run multiple errands for him while he did.  lol.   So, the bags were taken off the machine and given to the nicest lab man ever and send on their way. He promised he would have the results by 5 (Which was a huge relief since I was told on my vein check appointment (that still needs a new name).  While we waited, My parents and I ran to Cosi.  It’s my mother’s favorite sandwich shop and I hid the fact that there was one close to the hospital  (in the hospital actually) so we didn’t have to go everyday.  Don’t judge, ask my father how many times she had gone to Doc B’s since we have been there.    Anyway,  We ate, face timed and decided to go back to the blood center to wait it out.   We getup there and hang out with our awesome stemmie twin family for a bit when the lovely woman who had been with us all afternoon tells me she has to go do another procedure and once my counts were back another woman would be taking my  port out.  She hugs me and leaves. But not before I made her promise the new woman didn’t hurt. I even showed my big guns and threatened to withhold the  duct tape rose pen I was making for her if it did..  I know, BRUTAL!   About 5 minutes later she comes running back.   pparently my counts were back and I collected an insane 43,000,000 stem cells.   I honestly thought the original estimate was probably off, but GUESS NOT!  It was official, the port was coming  out! think I ran back to my room. Now, I videoed this part for you.  If you at all squeamish, you might not want to watch this.  Just remember there are twin 8 year old girls in Texas that can watch it while eating spaghetti and  meatballs.

 

Pic 6

xoxo Colleen

PS – I will  blog anymore today (Friday).  I am still in a great deal of bone pain from the Neutropen  shots.

Mobilization Day 10 – Lots of Sleep Before Jululiar Jerry 

~ Colleen ~ 4 Comments

Hi Everyone, 

Thanks for your good wishes and prayers.  Yesterday evening was very difficult to get through.  Every bone in my body just hurt.  Any way I tried to move cause excruciating pain and the pain pills I was on did nothing at all to assist.  I talked to The PA and she doubled my dose at about 11 this AM.  As soon as I did that it helped immensely.  It also made me sleep most of the day away.  I’m ok with that.  I needed it.   Tomorrow is  Harvest Day!  I’ll let you all know how I make out throughout the day.  I will be happy to get mobilization over.

Xoxo

Colleen 

Mobilization Day 9 – Here’s Bone Pain

~ Colleen ~ Leave a comment

Hi Everyone,

This morning we got out for awhile. I needed short sleeve shirts for this Chicago heat. It’s really for the Colleen hot flashes then the Chicago heat. We going to keep this blog post short because I’m in a lot of pain and my mothers posting for me.  On about 5 o’clock, I started getting bad bone pain. Unfortunately the pain pills are taking the edge off, but not doing much more then that. Although it hurts, it means the shots are doing its job and making the stem cells leave my bones and travel into my blood stream. God willing Thursday will bring a good collection of stem cells. That’s all for today. I will write more tomorrow. 

Xoxo

Colleen 

Not Cool Steve Harvey (Show)

~ Colleen ~ 2 Comments

Ok,  so those of you who know my family personally,  may know of my mom Steve Harvey obsession.  When my friend Vonna and I found out that he filmed his talk show in Chicago,  we set out on a campaign to get her tickets to his show!  Vonna and I wrote Twitter, Facebook, his show… Anything we could think of and we wrote multiple times. We did request ticketson the website,  but even that was not answered.  So I layed it all out in a personal letter from my heart hoping that would do the trick… Crickets!  Nothing from the show.  We just want tickets for them Steve!  Not cool… Seriously,  not cool!!

Here was the last message I sent.  

Hello, I sent this message via facebook a week ago.  I haven’t heard a response and was hoping someone would see this and help me give a small gift to my parents.  A gift of time away from me and my chemo 🙂


Hi,  my name is Colleen  and I am writing you to ask for a favor.  My mom Marianne  is a huge Steve Harvey fan.  Along with my dad, she is also my rock.    

At the age of 25,  I lost my fiancé Jason and his father Dan in tower 1 of the WTC during the terrorist attacks on  9/11/2001.  That was the first of many times my parents dropped everything to stand by my side as we all tried to grasp what horror hit our family.  They helped me pick my life up and gave me the strength and encouragement to fulfill a lifetime dream of becoming a mother.  I waited 3 years to adopt my daughter Rosemary.  Just before we were set to travel,  my mother was diagnosed with esophageal cancer.  My mother fought and beat that horrific disease in order to be there to help me raise my daughter.  Her and my father retired soon after Rosemary came home and when my job transferred me to Texas from NY,  they made the decision to move with me.  They lived in the same town for 65 years.  A town where they knew everyone and were comfortable with the life they made.  The made the decision without looking back.  

20 months ago we were dealt another blow.  I lost hearing in my right ear and went to my ENT to see what the problem could be. He sent me for an MRI and the results shocked us all, but my parents took it the hardest.  The results of the MRI showed multiple lesions on my brain in line with demylating disease…. In other words… I had multiple sclerosis.  This was 20 months ago.  20 months of sporadic blind periods, severe pain, walking issues, balance and speech problems.  I’ve tried just about all the medications available to halt the progression of this disease and I  failed each of them. With each failed medication, I began to lose hope that I would have a normal life.  Through all of this both my parents made sure I was taken care of and more importantly,  my daughter had the life that I dreamed for her.  After I failed my last medications in September,  I asked my neurologist about HSCT, a stem cell transplant procedure that was in phase 3 of a trial.  I was familiar with the transplant procedure as the year before my best friend had undergone it for Leukemia.   I had read all about Dr Richard Burt in Chicago. He  pioneered the use of this procedure for autoimmune diseases.  The results are amazing and for the first time ever,  those of us with MS have a real hope for a long term remission and possibly even a cure.  I applied in October,  received an evaluation and was accepted in January and Monday, I found out I had 6 days to get to Chicago for 2 months.  My parents are right by my side.  Knowing what is ahead of me in these months,  I can not begin to express how blessed I am to have such wonderful parents.

People offer hear my story and comment on how strong they think I am,  but the truth is… I am only strong because I have amazing parents who lifted me up each and every time I fell.  I am very very blessed.  God gave me them,  my fiancés’ wonderful mother and brothers (who have both relocated to Texas to be near my daughter and I), and family and friends who love me and support me even if I have to hobble around on on a cane or can’t remember their name.  That is why this favor I ask is so important to me.

My mother is a huge Steve Harvey fan.  She talks about his shows all the time.  We all tease her because you would think they were close personal friends.  Many nights as I lay sleepless in bed,  I can hear her laughing at family feud or telling someone on the phone “what a sharp dresser” Steve is.  The next 2 months are going to be so hard for my parents.  I will undergo chemo therapy and a stem cell harvest before eventually getting the cells transplanted back into me.  They will watch helpless once again while I fight for normalcy.  As a mother,  I know that is so much harder then the journey I will take.  Please,  grant me the favor of having my parents see a taping of the Steve Harvey Show while we are here in Chicago(2/23-4/18) I know that it will delight my mother beyond words and that in itself will delight my father.  Please give them this gift for me.  I will forever be grateful.

Colleen
www.remissiontocure.com

I mean,  I would totally give me tickets if I read that.  Not cool Steve Harvet Show people,  not cool